Manchester M.E.

Praise

2012-01-03T11:48:00.002Z

Just had a fabulous boost to my self esteem in the form of an email forwarded to me by the team leader of the inclusive culture project:

Dear Team,

I have met with Vicky Stringer for a longer talk on my bit for inclusivity. Wow - what a 'can do' attitude! She is full of ideas and was often one step ahead. (Not difficult in my case I KNOW!)

Then, last Wednesday she came to the Health and Human Sciences conference, was very supportive of inclusivity there, made contacts all over the place and was a superb ambassador for the whole thing. Has sent me help with taking part in twitter. For a student who is not always very well, she is investing a tremendous amount in all this. It's an absolute priviledge to work with some one so tuned in and full of excellent ideas about how to push things forward. So dear colleagues, I'd like to say that who ever thought of her for the student choice on this project has made an inspired choice. As if you did not already know....

Yup, I still 'got it' *grin* not bad for someone who can't even get out of bed for half the month eh?! I am SO getting me a job. ..Somewhere.

moving past pessimism - sort of..

2011-12-11T23:03:00.001Z

I've decided to ignore any fears regarding the ESA appointment and focus on the hope that they can help me find a job that works around being ill. I figure if I can get into a routine it will help me get back into pacing, having a provable income means I can start looking for somewhere more suitable for us to live without worrying who I can ask to be my guarantor (letting agents don't seem to like folk on benefits down here - even though that's a more reliable income than wages these days!)

I can also use whatever job they 'force' me into as a way of proving (both to myself and future employers) that I'm a good bet; one day I hope to get something that relates both to my degree and the experience I've built up in e-learning and blended learning theory, techniques and applications (software and web applications that is) and help make a difference in the way knowledge is passed on.

I've accepted that learning to drive is not on my list of future activities: even if I did we couldn't afford insurance for both of us on one car never mind running 2 cars. So bus travel is inevitable unless all my campaigning and volunteering pays off and I can get work at the uni - ideal as it's only a 10 minute walk!

But by god doing the ATOS medical assessment form is depressing!

Reading it back to myself I'll be surprised if they consider me fit to breathe never mind work!..and that's with just the main crap I deal with written down - not the little things, just the big 3: fatigue, brain fog and pain. The thing is - yes, I know there is an average of 11 days a month where I can't work because I'm neither use nor ornament; but the other 19-20 days I can do a lot if it's computer based work; I figure I can easily do 12 hrs a week (3-4hrs a day so long as the days are spaced a day apart ie mon/wed) assuming I need to travel the national average of 40mins each way, if I can work from home I can up that to 5, maybe even 7 hours a day (depending on the work, though at my present levels 7 hours is definitely pushing it)

You see, I am organised; so long as I know what is expected of me and I can work around my illness to my own schedule I can get things done - in some cases more efficiently than a 'normal' person. Unless of course I am just fooling myself there in an attempt to think positive,,? NO, aaaarrgh! say it isn't so!

*ahem*

So despite the depressing picture being painted in my assessment form I'm hoping at the physical assessment they'll say "cool! go here and we'll find you a job as a virtual worker" even if it's boring monkey brain data entry I don't care so long as the pay is comparable to my current income and it means I can actually better our family situation - after all, when working I'll be useless at home for anything else so why give up quality of life to be worse off..?

..though I'd much rather they helped me find funding to do a masters/ Phd so I could try trolling for work at the UoH as a visiting lecturer in the computer science department for one or 2 modules.. £45ph? Yes please! And I have so many ideas on ways to present the material to make it less hard on me and more engaging for the students.. Ahh.. If wishes were horses *sigh*

So much for that idea..

2011-12-06T13:46:00.001Z

I did make a start, I have a wordpress installation all set up with the basics ready for a move and a cull - but sadly the day after posting that last I fell ill again, and I haven't been fit for anything since - I've had exactly 3 days (not even in a row which sucks) where I've felt 'normal' as in no brain fog/ cfs or menieres/ sickness or flu to deal with since September 1st. considering we're now 6 days into December I'd say that sucks massive sweaty donkey bollocks wouldn't you..?

So, as is par for the course this is when the 'bad' news hits; it always comes just when I'm at my lowest. While I'm trying so hard to stay positive and think about the possibility of working I'm informed of the need for a medical assessment and transfer to ESA so they can assess my fitness to work.

I will admit to conflicting emotions; fear that i'll lose the financial security of my benefits and be forced into some monkey brain job that sucks all the joy out of living and leaves me useless at home for anything involving quality of life or ability to be a decent mum.
..But the even greater fear is that they'll confirm I am indeed useless and will never be able to work.

I'm worried that as my benefits are the sole income of our household we'll struggle for a couple of months to pay rent and bills or buy food - stupid I know as if I lose incapacity i'll just be put on JSA and so will Stef - in fact we may even be better off that way as we'd both have an income AND we'd get full housing/ council tax benefit - and possibly income support..

But change is scary, any kind of change be it financial, emotional or other; I just wish it wasn't also stressfull. I need to be well so I can try and find a job that I can hold down: I don't want to be told that chances are less than slim. If only someone would offer me work that would allow me to work on my laptop from bed.

This is why I loved studying; I felt in control, I felt useful. OK so I never once hit a deadline and had extenuating circumstances for everything - but I did good work, I learned things and I got a 1st class honours degree from doing so - that is a great achievement.

Sadly the workplace rarely allows you to miss a deadline; extenuating circumstances do not exist in the business world and home working is still a rarity so working from my bed is still not an option. I guess it's time to face the fact that unless the ESA folk know of a job that lets me work as though I was studying I'm stuck being useless forever - or until the working world catches up to the digital revolution at least.

	2010	2011
Amount of crashes in January	8	8
Amount of crashes in February	9	9
Amount of crashes in March	13	7
Amount of crashes in April	10	5
Amount of crashes in May	11	14
Amount of crashes in June	15	10
Amount of crashes in July	8	9
Amount of crashes in August	16	7
Amount of crashes in September	10	9
Amount of crashes in October	14	15
Amount of crashes in November	8	18
Average crash per month:	11	10

As before the only 'crashes' I've recorded on here are the 'full day in bed/ incapacitated, no good to anyone' days - the cognitive and half days I don't bother with as I can still get some things done(even if it's just doing a load of washing/ sending a few emails or making sure I eat something)

Moving on

2011-09-29T22:52:00.003+01:00

Blogger has been good to me, really it has, but now it's time to do as I've been intending to do for quite a while and shift over to the revamped CFS site i created on my personal domain, that's right I'm moving to http://rosevibe.me.uk/cfs it may take a few days from now for the new blog to be live while I tweak some things and install others, but the new site should be fully accessible for those of you using screen readers and the like.Fingers crossed it also means i'll be more regular in my updates *grin* for example I can't believe I neglected to mention that I managed a first class honours in my degree subject (Bsc IT web based systems) and that since leaving uni this week is the first time I've felt any inclination to do 'webstuff'. I was totally burned out, suffered a mini-relapse and have some recurring mystery abdominal pain that the GP thought was appendicitis (it wasn't) but as with the CFS I don't see any point going back to the DR's as the specialists in 3 different departments at the hospital ran tests and couldn't figure out the cause so why waste our time.Rightio, back to the exporting and tweaking of the new home; I'll be posting once more on here to share the address of the new blogs feed for those of you so interested, otherwise it's adios blogger! Let's always be friends..

Hospital visit

2011-09-03T08:53:00.001+01:00

so yeah, 3 years ago today i was lying in a hospital bed with my newborn. Yesterday i was lying in a hospital bed due to abdominal pains; stef has been joking that I wanted to relive the birth, I didn't see the humour.

The pain started at five am, it was a sharp burning slashing pain that came in waves, I tried to ignore it as I've had it before (though not at such an intense level) I just assumed I'd pulled something inside to do with the scar - like I say I've had it before and it always went away so no point bothering the Dr.

This time though the pain just kept growing to the point that at 8am I was sat on the couch with Bella and I passed out for a few seconds - I have only ever fainted twice before and both times were due to an infection so.. Drs.

I went in, got poked and prodded - he pressed down on the tender spot and I screamed and burst into tears, he then phoned the hospital and asked that I be admitted with possible appendicitis. Great.

We got to WGC and I was admitted, disrobed and left on a bed for several folk to come and do more of the prodding and poking - but by now the pain had practically disappeared as it was just a dull all over abdominal ache that made it impossible for me to recall just where it had hurt the most before.

The surgeon on call decided it was unlikely to be appendicitis and I was sent in for observation. All day I was stuck in a hospital bed with the pain coming and going - always seemingly gone when anyone medical was around to check on me; which figures..

After an ultrasound, an internal, swabs, lots of external poking plus urine tests and blood work I was given a possible explanation based soley on theory - the gynaecology lass suggested that it could be adhesions and the first examination by the GP may have 'done' something to help push whatever was causing the problem back into place, the surgeon said I may have had a cyst of some kind and again the GP examination burst it hence big stab of pain and then very little else.. To be honest by 8pm I didn't care, I just wanted to go home.

As usual they could find nothing wrong with me, tests came back negative and I figured I could manage it myself with painkillers so when they asked if it had gone I said yes. ..Because it had gone back to the dull ache, ok so 10mins later when we were back in the car it came back but it had been doing so all day so what was the point in my taking up a bed that they obviously needed when they could do sod all for me that I couldn't do for myself at home..?

If I can avoid the medical profession I will, I have ME/CFS that they cannot help me with - so I do the best I can alone, if I were to tell them every time some symptom returns or if I'm finding it hard to cope with something I'd be there every bloody week! The Menieres disease; likewise. I go in for my betahistine prescriptions as they do help keep it under control - mostly.. But if I were to go in every time I had an attack again i'd be in there at least once a fortnight - so just adding a mystery fluctuating abdominal pain to the list of things I sort out myself is nothing.

All hail over the counter pain pills eh..?

Coping with stress the list way

2011-05-27T12:22:00.002+01:00

Stress is the bane of everyone's existence - more so for those of us whose bodies will shut down at the slightest intimation of that nasty wee beastie rearing its ugly little head.

I know when the stress is kicking in even before it starts making its presence known by stirring up the ME/CFS or Menieres disease; I feel it like a tight little presence in my head - as though it's an inflatable air bag around my brain that is always there but instead of air it inflates with stress. When I feel that warning tightness I know I need to take a step back and chill out or I'm in for a really rough ride on the illness front.

But how do you do that? How do you take a step back? How do you stop the stress from taking over?

For me distraction is the key. I'll sit down and make a to-do list for everything that may be causing the stress to kick in, then I'll turn on the karaoke and sing for an hour or so - or I'll read a book or watch a few episodes of some show I like on dvd.

Yes, that may seem counter-intuitive if what is stressing me out is work that needs doing to a set timescale, but believe me it works; it clears the decks so I can then focus on the items on my list.

It's a 2 part thing really; making the initial list while you are stressed starts the process - it feels like you are addressing the situations that are stressing you out which helps you feel in control which helps you calm down enough to take the 1-2hr breather (or even a full day if you really need it) this helps deflate that nasty tension to the stage where ist easier to focus on smaller tasks without being overwhelmed by the big picture.

That's the real trick; making things less overwhelming and more manageable.

You have forms to fill out?

Do the easy stuff like photocopying evidence and filling out name, address D.o.B, and NI/SSN on all of 'em in one go first.
Take a singing/ film/ book break
Write out the other info you need and check it against your evidence.
Take another break then check it all over again before posting/ taking in - do your best not to think about the outcome of your form filling, stay in the moment and do one task at a time.

After the task is complete and you're inevitably back to stressing about the outcome/ future, take another break - have a bath and try to guestimate how long you stay in there before you start to wrinkle; try to think about ANYTHING but the things that are worrying you.

If you can't shut things off; fire off a few tweets, phone a friend or write a blog post to rant and release the tension that way, then make another list.

Take everything a day at a time; you will still worry and stress about things you can't control - the trick is to only give into it now and again; plan for the worst and hope for the best.

The list is your plan, letting go is what will see you through it.

Diet really IS important..

2011-05-23T13:46:00.004+01:00

For the last few weeks we've strayed badly from the path of healthy eating; Stef delays shopping until we're ending up getting take-out or eating cereal because there's nothing in/ can't be bothered to cook, my birthday came and we were eating the cake and chips/ dip/ processed stuff for days and I've been indulging in a Starbucks chai latte far more often than I should.

We've been eating hotdogs, toast, pasties and the odd healthy tuna pasta salad but my body has definitely noticed the difference. As I write this it's a struggle to find the words, I'm almost falling off the keyboard tray because I've not got the energy to support myself - and I've been in bed practically all morning.

Every day for the past week I've either had to go crash for a couple of hours or just struggled to get up in the first place - and it doesn't help that Thursday I went out with the girls and I've just not bounced back from it like I should.

I know I'll be 'ok' (as ok as it gets with me/cfs) once we get the food back in line - Stef said he's going shopping today and we'll be eating healthy again from now on.. Guess it doesn't help that I'm stressing about my final year project and what it could mean for my grade as the second exam didn't go as well as i'd have hoped - also looking back on the 1st exam perhaps I was a little optimistic because now I don't feel half as confident.

I've still got to get my conference talk sorted along with the slides, I'm worried about not getting the job i've applied for and worried that I will - I just wish I could shut specific parts of my brain off so that I could function without feeling as dead as I do now.

just forcing myself out of bed to get some weetabix for lunch was enough to wipe me out again earlier - but it's better to use my energy getting fuel than to just sit and attempt to follow some rubbish on tv.

Once this damned project is out of the way I can breathe a little easier, the diet will get sorted, I'll start to physically pull through this slump - I just need to remember this next time we slide into the convenience/ lazy food trap. we've wasted double our food budget on eating rubbish and look where it's got me. Stupid stupid stupid!

..and i've not been taking my VegEPA or my supplements - just shows eh?!

From tomorrow, back to the food diary. I want to see this trend continue until the average crash per month is less than 3:

	2010	2011
Amount of crashes in January	8	8
Amount of crashes in February	9	9
Amount of crashes in March	13	7
Amount of crashes in April	10	5
Amount of crashes in May	11	10
Average crash per month:	10.2	7.8

The only crashes I've recorded on here are the 'full day in bed/ incapacitated, no good to anyone' days - the cognitive and half days I didn't bother with as I can still get some things done then (even if it's just doing a load of washing/ sending a few emails or making sure I eat something)

I honestly think May would have been half that figure if I hadn't been so stupid with regards looking after myself - lets face it the month isn't even over yet and I'm almost at the same number of crashes as last year which kills the positive trend I had going.

I've applied for a job - wish me luck!

2011-05-22T12:44:00.003+01:00

There's a couple of part time posts going at the uni for disability advisers and after a little push from my friends in the LTI and BLU departments I've applied for one of them.

Hopefully under the 2ticks scheme I should at least get an interview depending on how HR view my application prior to passing it on to the head of disability services but.. Meh, we'll see.

This is the personal statement I included with my scanty cv offerings (scanty because I've obviously had no job since getting me/cfs and I didn't see the relevance of adding the stuff I did over 10 years ago)

As a soon to be graduating student at the university I am fully aware of the facilities available and how to access them from the student perspective and have personally benefited from the assistance provided by the disability support team. I understand the university systems and am aware of the procedures already in place.

I feel that I could bring something to this post beyond the people facing, administrative and customer service type skills my CV demonstrates. I not only have personal experience of studying with both a young child and multiple hidden physical disabilities, but I have voluntarily participated in two projects associated with blended learning and the use of technology through the Blended Learning Unit: Dominic Bygate, the then team leader of the CABLE (Change Academy in Blended Learning Enhancement) group project said of my work “Vicky has had an enormously positive effect on the project and has made a huge contribution in terms of the technical aspects, the coordination and the direction of the project”. August 27, 2009 (via my linkedin profile: http://linkedin.com/in/rosevibe)

I am also currently the student member of a Higher Education Academy (HEA) funded project ‘Developing an Inclusive Culture in Higher Education’, the aim of which is to develop an inclusive teaching strand to the University's curriculum design toolkit. The core team members, besides myself, are Helen Barefoot and Sarah Flynn of the Learning and Teaching Institute and Marcella Wright; Head of Equality. Together we are trying to assess the needs of all staff and students across the institute and develop mechanisms through which to best support them. During the recent HEA residential I ran an open space session for the other student delegates, all of whom have a disability. We discussed the levels of support within their institutions and determined specific challenges from the student perspective and considered how best to address them.

Use of technology is integral to all aspects of work and study and I am passionate about ensuring technology is used to best effect to aid learning. I would relish the opportunity to promote the more integrated use of technology within the curriculum, ensuring that all students are given the maximum opportunities to succeed.

I have provided support and guidance for fellow students with disabilities and have been able to provide guidance on accessing the Disabled Student Allowance as well as information regarding Disability Services and the appropriate contacts for students in need. I also provide online support and mentoring for sufferers of chronic fatigue syndrome and I have published coping strategies based on research and my personal experiences.

I am an active member of several online support networks for parents and people with disabilities and would like to continue in that vein by offering help and support for students to create their own coping strategies where appropriate; whether it be leveraging online social media and choosing technologies to complement their learning style and physical needs or simply choosing a work flow to make the most of their strengths and creating a study needs agreement to reflect that.

Most of all, I want to be in a position to help people achieve beyond their expectations and make use of my own skills and knowledge in doing so; being able to support other students who for whatever reason may struggle with university life would be the logical extension of my time at the University of Hertfordshire; they would benefit from my personal experience and knowledge of possible tools and techniques to aid their studies as well as the core function of first contact for their basic study needs and well being.

Fingers crossed that's enough; I've been boning up on uni policy and the disability/ equality act in preparation for a possible interview.. I mean how ACE would it be to not only get my degree but to get OFF benefits before my graduation ceremony actually occurs?

Yes, I've worked out the finances and taking this job potentially leaves me £100pm worse off than I am on incapacity but tbh I don't really care - maybe I can make that up with some freelance web design or finally making jewellery to sell - the most important thing is getting out of the benefit trap and on the path to finally owning my own home, after all - wages increase more than benefits and once Bella is full time at nursery Stef can work and a combined income will remove any deficit on my part.
..I hope.

Been a long year..

2011-05-04T13:54:00.004+01:00

..But the end is in sight!

I had my first exam yesterday and despite being worried as the day before was spent entirely stuck in bed with my worst CFS crash in a while - I think I aced it.

That is the first time I've ever come out of an exam suprememly confident in my responses - it's also the first time I've looked over an exam paper and had the pick of the optional questions because I knew the answers to 'em all!

Hopefully that's not over confidence speaking but so long as I can do as well on fridays exam then I'm guaranteed my 1st class honours no matter what grade my project gets.

The deadline for that is the 23rd of May so not long to go until my life as a student is over. Hard to believe freedom is so close!

To be honest I'm trying hard not to think about life after exams because I'm worried to death about getting a job; I know I can only do part time, it's just; who will take me on and doing what?

But that's borrowing trouble and it's normal for any graduate to feel that way so for now trying to shelve any pessimism and just concentrate on the work that will actually determine the level of job I can apply for.

..oh and if any of you infrequent readers are interested - I could use a little help with my project:

this 5-10 minute survey could really use some love, it is task based and requires that you locate and download a certain .pdf file, but I'd appreciate it EVER so much if you'd oblige a gal.. *flutters lashes* pretty please?

CFS Diet suggestions

2011-04-07T14:39:00.006+01:00

These are all things that I've found work for me - they may not work for everyone but hey, it's worth a shunt eh?!

I found the most difference in my symptoms when I:
a. Stopped taking the contraceptive pill (I know, not relevant to you if you're missing a uterus)
b. Cut out of my life stressful energy thieves (family and 'friends' alike)
c. Changed my diet and lifestyle

Hydration:
I have the occasional yorkshire or chai tea (hard to cut out caffeine completely) but for hot drinks it's mostly Ovaltine (great way of upping my b-vitamin intake) or rooibos (redbush) I have no carbonated drinks at all; cold drinks are apple juice or cranberry juice mixed with filtered water.

If I have to have a bottled drink with added sugar then I've found the vitamin water drinks to be very tasty; they are a bit pricier than others on the market but each bottle holds about a pint of fluid with the advantage of added vitamins (though jury is out on how effective those vitamins actually are) since we dehydrate so quickly it's handy having something that's easy to drink, water by itself can be hard to drink in large quantities sometimes; you need flavour!

Food
Stef still does most of the cooking but (now that I have longer periods of being able to do for myself) at least once a month I batch cook things like soup, mashed potato and shepards pie for the freezer so it's just a matter of taking a portion out and sticking it in the cooker until the timer dings)

If I'm having an off day but can actually manage 10mins in the kitchen I also eat a lot of things like scrambled eggs, baked beans or banana on toast (minimal cooking required for maximum protein)or tuna mayo with pasta or baked potato with spinach and mushroom when I'm feeling a little more energetic, otherwise it's a fortified cereal either with milk or just in a bowl as a dry snack.

For something hot that seems more substantial but takes even less effort than the above, if you can't do the prep work yourself then either buy pre-prepared veg or ask a friend/ family member to peel and chop enough for you to seal into portion bags for the fridge with a garlic clove, sprinkling of mixed herbs and a liberal amount of olive oil (enough to coat but not enough to have 'em swimming in it) then you just make it to the kitchen, empty the bag into a roasting dish, go rest up while it cooks for 30mins and then empty onto a plate and enjoy.

..It may also be handy having a few portion bags of pre-cut carrot and some hummus for more healthy snacks.

I've also recently discovered MunchySeeds for on the go snacks - I can testify the orange tub is ridiculously addictive for seeds! and a small handful whenever you feel the first intimation of fatigue/ headache/ basic wrongness seems to help stave it off for longer.

Basically eat more high protiene foods; nut bars and the aforementioned munchyseeds are great snacks to keep you going, and drink ovaltine - as mentioned above it's got a good dose of much needed B vitamins which helps far more than sugar

(..a couple of my healthy friends have started drinking it instead of coffee when they need to keep working and alert and they find it helps too..)

I've found the trick is to graze; eat little and often through the day and I can go longer; keep hydrated with filterd water or apple juice and every hour or so have a handful of seeds, raisins, fruit or a nut bar (these are my favourites: eat natural bars
..Even if you're not that hungry your body needs fuel, folks with CFS even more so than normals in my opinion!

If you're having a cycle of being stuck in bed, keep a cooler bag (or mini fridge if you can bear the noise) by the bed with chopped fruit/ veg and a drink or 2, ask a friend or family member to replenish this for you when they visit and so long as you graze when you remember to it should help you build up that little bit quicker; at the very least will stop your weakness getting worse from enforced starvation and stop you feeling like such a burden for continually having to ask for food or drink (alongside the added resentment you're likely to feel for having to ask in the first place..)

Gearing up

2011-01-11T12:13:00.002Z

The end is in sight - finally!

I've been getting things ready and working on the preliminary parts of my project, it doesn't officially start until the 21st but I figure going off last year; the further ahead I can get myself the better, because come April all hell will break loose as exam stress and deadlines force the usual breakdown and relapse.

On the plus side I'm organised and know what is expected of me, I have most of the course materials from last year so will be able to keep abreast of things even in the event of a relapse - and now I've managed to get wamp set up on my laptop I no longer need an internet connection to code and test my stuff so I can literally work anywhere now.

Even being up at 6am with the child before a quick nip into M&S for some late christmas gifts hasn't phased me this morning. I've done an hours coding and am about to take my 2hr break to sit and watch a film over lunch, then of course it's back to it but with pacing set at 10 minutes of work then 20 minutes of rest - should make for a productive day!

..I hope.

Old ghosts and how to deal with them

2010-12-29T16:04:00.003Z

A few years ago I made the decision to have nothing more to do with my mother; She'd betrayed my trust for the last time and hurt me in the worst way imaginable, then instead of an apology I got a lecture about forgiveness and how I should consider her feelings..

At that point I decided there was no way I was wasting any more of my valuable time and effort on her. For 30 years I'd made excuses and rationalised away her abominable behaviour but that incident broke any hope of a change; I realised if I ever had kids I'd not trust their feelings in her hands and that I certainly did not trust her to keep quiet about things I'd rather they didn't know; it was that realisation that gave me the courage to cut off all ties.

Now I have a child of my own I am thankful whenever she crosses my mind that I made that choice - which is unfortunately almost daily as it's hard not to make comparisons now I'm a mum; at least one thing I know to be true is that she definitely taught me how NOT to behave around my child - I just pray any poison I unknowingly inject into my daughters psyche is of a far less malignant kind.

When I made that decision to cut away the stress she engendered in my life, suddenly I lost at least half of my ME/CFS symptoms and funnily enough it's usually incidents from my past butting into my day to day life that bring about an unexpected flare up and crash - I can handle work stress to a point and can manage my exercise and work load the same way; emotional stress is another thing entirely - it wipes me out completely and I have no defence against it.

..So you can probably imagine my 'joy' upon receiving a letter from the woman who bore me asking for a picture of my family and a hope for reconciliation.

I've had an agonising few hours of self doubt and second guessing, where I wondered if now was the right time, if she'd changed.. Swiftly followed by a mental slide show of all the times I've had this same mental run down in the past and gave in with rationalisations and excuses for her only to be put through the wringer again and again.

I have more to lose now; I have a tenuous control of my health, a daughter to raise and a future planned out so there can be only one response:

NO.

Never. Not on the life of anyone I hold dear - and that definitely excludes her.

It may seem harsh to anyone without the necessary background information but I'll put it to you this way; if a 'friend' lied to you, told anyone who would listen your secrets and then repeatedly caused you emotional and financial difficulties - would you continue to keep them as a friend?

I pity the fools who do.

So what if she gave birth to me - for years I lacked self confidence and direction because of issues she caused; I don't need to see a psychiatrist to know those issues are still there and that the last thing I need is to bring them back to the surface and wreck the life we've built here.

So the letter will be destroyed unanswered, the request unmet and I'll do my best to ignore her existence again and hope that the blip in my equilibrium will not last longer than today.

..Now if I could only convince well meaning family members to butt out perhaps the threat of similar missives would be removed (..someone had to have passed on my address to her; she's not web savvy enough to check the whois)

FECKING ARSEHOLES! ..or why the slc suck great big hairy donkey bollocks.

2010-11-26T21:19:00.001Z

I kid you not - trying to get this sorted is almost as bad as applying for DLA!

Last year they finally paid me in a lump sum AFTER the academic year ended. This time I thought it was all sorted but NO.. That would be too easy wouldn't it?

After paying my first expected instalment, they've now sent me ANOTHER 'final' notification stating that i'm to be paid less (not getting the parents allowance or adult dependants grant now for some reason - maybe I lost my partner and daughter in some freak accident and nobody told me yet?)

..on top of which they are also now paying £3220 in tuition fees - despite the fact that this years fees were already paid last year because study was deferred on health grounds so the fees have rolled over.

I'm SO looking forward to calling them on Monday (not!) to speak to 3 different people who will each tell me that this or that information isn't showing on the system now - despite it obviously being there before seeing as i've already had a payment from them!

I'm fed up. My housing benefit and council tax benefit all get based on the expected amount from the SLC, every change has a knock on effect and i'm sick of always having to juggle the house finances to compensate - my other half has no income because he's at home looking after me and bella - because I get student loan he can't get income support and because he's not looking for work he can't get jobseekers - my income is IT for the 3 of us.

Considering going up to darlington and burning the place down. ..except that'd set the process back for everyone by about 2 years again.

Fecking idiots - why do all paperwork places hire idiots? They lose items sent by registered post, ask for information they have previously told you they don't need and delay asking for something important until you've already sent in 5 copies of the stuff they don't need but have asked for AGAIN.

I HATE THE STUDENT LOANS PEOPLE WITH A PASSION.

..and breathe.

Temper temper..

2010-11-11T12:57:00.002Z

Ok, so she's 2. it's not like there isn't any warning that this will happen - they're called the terrible two's for a reason it seems. She's just infuriating me all the time - it's a constant battle of wills 'dat mine!' 'NO!' 'go'way mummy' 'want it' 'me do dat'

..and the tantrums! Any response contrary to her desire is met with screaming, kicking, pinching, biting.. The other day she got to me so badly that stef had to take her out of my sight so I didn't pick her up and throw her across the room in a rage.

It's hard enough to cope with her being like that when I feel well but the me/cfs has kicked in with a vengeance and so lately i'm either fatigued, in pain or completely brain dead (or all three) and it's really hard to keep a lid on my temper when I'm tired or in pain.

I KNOW she's just testing her limits and in the process pushing me to mine but i really feel sometimes I can't cope with it - and this is a child that 'everyone else' says is 'just a normal kid'

I KNOW that. ..But 'everyone else' doesn't have to deal with the kicking and biting and pinching on a body that is so worn down through illness that even the slightest knock feels like it's been administered by a baseball bat wielded by a giant.

I've managed to mostly stop the biting by dint of biting her back when she does it, pinching back doesn't seem to have the same effect sadly because then she thinks it's a game and pinches back even harder

..and hitting is out of the question (though she does get a slap on the fleshy part of her leg if she pushes me too far when I'm fighting with her to change her nappy and there's shit going everywhere - roll on being potty trained!)

Stef took her out of the room because I had to turn my back, clench my fists and literally hold on in silence until the red mist left me - if I'd had to speak or do anything it would have been something i'd regret.

it's possible that part of the reason i'm so bad at the moment is just down to being a parent - stress and bottled up emotion play havoc with your system and i'm so angry so much of the time at the moment - at bella, at stef, at myself.. it's hardly surprising i'm sliding back into a pre-relapse state.

Just need to get through this next 2 years - that's what I keep telling myself; get my degree and have a year out to recover.

If I can.

Arsing cuntybollocks!

2010-10-25T00:45:00.004+01:00

I've really enjoyed the last month or so. It's been great having no work deadline and being able to not think about coursework or 'THE FUTURE' for days at a time; Instead I've been a mum. I've spent quality time with my daughter and Stef and just crashed around family time instead of crashing through it before locking myself away to work.

It's made me realise that I don't really want to get the job I know I need to get. Not because I don't want to work; I do - I love being around people who treat me as knowledgeable and competent as opposed to ill and weak and pitiful and I love feeling as though I'm doing something constructive with my time.

The problem is - I have enough energy to be a part-time mum OR a part-time employee; as soon as I'm working I'll be back to being too tired to do more than lie on the couch and watch my daughter play; I won't be able to go out to the play centres and home visits with her and Stef like we have been because I'll need to conserve that energy for work.

I don't want to live to work; People are supposed to work to live - that's the whole point!

I'm already half dreading the return to structured classes in January because I'm afraid I'll lose this rapport we've been building. My daughter always pushed me away and cried for Stef before; I love that now she cries for me too when she's hurt or in need of assistance; I don't want to go back to being useless or unavailable mum - but there is no way of avoiding it if I don't want to waste all my hard work up to now.

Why can't there be a compromise with the CFS? why do I have to choose one thing over another? I would give ANYTHING to be normal again; to be able to come home after a 4 hour work day and still have the energy to play with Isabella.

But it's not going to happen. Stef keeps telling me not to get down about it - to remember that it's only another 6 months. But what happens then? I get a job and give up any hope of being a real mum?

We might get the home we need but at what cost? Why am I doing this course? when I started it was to get out of the benefit trap, but that was before Bella came along and I didn't have any other claim on my time. Now she's there and if I work I don't have the time or energy she needs from me.

Stef is right, I have 6 months to work on it at least, worrying is a further waste of energy that I don't have to spare but it's REALLY hard not to fret.

I'm so lucky.

2010-08-11T13:00:00.002+01:00

I've been reading back through the early postings on this blog and I have to say that I'm probably one of the luckiest people alive.

I no longer have the majority of the symptoms I suffered through back then; now all I have to deal with is fatigue, brain fog and pain (and the occasional bout of menieres disease) some people may say there is nothing lucky about that but when compared to those early days I thank my lucky stars that, awful as they are, these things are all I have to worry about now.

I have coping mechanisms in place and yes, I lose around 30-50% of my waking life to these symptoms but that's a damned sight better than the 80-90% of waking life I was losing before.

I have learned through this illness to prioritise and structure my life to get the most out of it - I know many people that seem to gain nothing from all their hours of perfect health so this makes me a winner in my eyes.

I manage to spend quality time with my daughter and partner, I am slowly finishing my degree (and yes I'm on track for a 1st class honours) and the job prospects following that are incredibly hopeful - even despite my health issues.

So yes, I am very lucky. Things could be a lot worse, things HAVE been a lot worse; the fact that they are always improving (albeit slowly) is something to be very thankful for.

My main goal when I became ill was to get well enough to find work and come off benefits - this is a goal I may finally realise once I have completed my degree. It's a very satisfying thought to know you can actually achieve your goals.

My next goal is to earn enough to buy the house I've been dreaming of forever - the house I'd saved enough deposit for when I got ill and had to watch that money dwindle to nothing as my income vanished.

I'm lucky because I didn't buy that house before I became ill, if I had I'd have been homeless and most likely dead by now as I wouldn't have met the man who changed my life and gave me my daughter and the strength to keep going.

Everything happens for a reason - never forget that.

The future's so bright.. I gotta wear shades!

2010-08-03T21:21:00.002+01:00

Principles and applications of web Services (technology): A3
Digital Entertainment Systems: A1
Web Application development (design): A3
Professional Issues in computing: A3

You see those grades? they're mine they are *grin* ok, ok so what if it took me an entire academic year to do it!
..Considering I've had 74 days (that's right, just over 2 months) bedridden by fatigue (and that's not counting any crashes prior to the diary count starting mid January otherwise it would probably be at least three months considering I lost most of November and December which necessitated the deferrals in the first place) and god knows how many other days I lost to the joys of brain fog (I'm never mentally aware enough on those days to think of keeping count!)

I'd say I did really bloody well.

Lets put it this way - I'm on track for a first class honours in my specialist degree subject so it's worth the blood sweat and tears of studying with ME/CFS and a toddler.

As Chris said on my Facebook page: Vicky rocks!

So, what now you ask? Well, on top of actually being a mum again instead of a snappy, stressed out work beast;

I'm working on several websites (mine and other peoples)
updating and improving my knowledge of wordpress for this very reason (so a fair bit of reading)
I'm researching and organising ideas for my final year project (which funnily enough involves the need to understand wordpress VERY well)
I'm creating several 'how to' videos for the ESCAPE project at uni.
making time to re-read my notes and try to keep what I learned to get those A grades fresh in my mind (important to do when you have CFS memory to contend with)

I know, you'd think I'd kick back and relax wouldn't you - but I really don't dare to. One thing I learned this year is that I can pace, but I can't stop;

If I stop I lose any headway I've made.

So, gotta keep the momentum going because I REALLY, really want to be able to get a job at the end of all this.

Musing

2010-04-23T23:51:00.002+01:00

Ok, deferral form and supporting evidence has been submitted - I am officially taking the entire of this semester again next year (assuming the panel ok it)

I'll be honest, having to split my final year like this makes me feel like a failure. Lofically I know i'm not but emotionally.. I just really hate being this mentally weak, having to acknowledge that I can't cope.

..But the worst part of it is that this is a further indication that any hope I harbour of being able to work a full time job is just a pipe dream. If I can't cope with almost part time hours on a flexible course then a full time job will kill me.

..possibly literally if the reported occurrences of a weakened heart in ME/CFS sufferers is true. I'm not giving up my hope completely though - I was able to just about manage a full time course AND the cable project before bella was born.

If I can slowly build myself back up then one day I'll be able to work full time. I have to believe it otherwise what's the point of pushing myself like this?

Why put off until tomorrow..

2010-04-22T06:39:00.003+01:00

Once again I am putting in for deferral. There is no way I'll pass the semester B wad and paws exams, I've missed too much class because of the fatigue/ pain and general crapness of menieres and me/cfs.

The truth is, i'll alsobe lucky to pass my DES deferral assignment, I've not even started the last of the filming, I need to get my arse in gear big style - the problem is, i've got myself so stressed about it that I shy away from thinking about all I need to do because it brings on a crash.

Pathetic eh?

I'm averaging 3 crashes a week - that is ones bad enough to keep me in bed for at least half the day and mentally unfit for anything for the rest of it.

When I'm not stuck in bed it seems i'm having to look after bella or clean house and that's given me even less energy/ enthusiasm/ inclination to work.

It doesn't help that she's down with a chest infection and Stef has some kind of flu bug. *sigh* and I don't know what's wrong with me but I need help; I'm being plagued by bad dreams and unpleasant memories.

My mind just keeps regurgitating all the bad stuff that's happened to me since as far back as I can remember, then when it's done reminding me of things I'd give anything to forget, I get slammed with the nasty dreams about things I pray never to see or go through.

To be honest, i'm glad we got the eye massager - 30 minutes on that before bed seems to be the only thing that can send me off these days, I just wish I could stay asleep instead of succumbing to these dreams..

DSA - every CFS/ME student NEEDS this!

2010-03-16T21:20:00.003Z

I just wish I'd applied for it at the very beginning instead of thinking it would be as torturous and stressful a process as DLA. It isn't, not by a long shot!

It was actually a rather swift and painless process thanks to my needs assessor, he was lovely!

I've had my provisional needs assessment sent off to be approved by the LEA so fingers crossed that will happen before my course ends (since I'm still waiting for them to stop asking for information to assess my maintenance grant this could be a while)

..Assuming all goes well and it gets the big green tick though i'll be the happy possessor of an ergonomic chair and footstool and some software called mindview that I'm convinced will make my revision process a lot more constructive than it usually is!

With 5 exams to revise for this is of the highest priority! I'm actually seriously considering downloading the free trial to try and make a start on all of that now - I've only got just over a month before the exams themselves so time is of the essence!

Why people with ME/CFS should never become famous

2010-03-14T23:36:00.003Z

I've had an interesting few weeks. Someone up there either REALLY loves me or is just 'avin a laugh at my expense.

I won an award to help pay off some of my ridiculously large student loan and the person handing over the ceremonial cheque was non other that the princess of pop herself; Kylie Minogue.

The whole thing started when I got an email through from a site I'd signed up to telling me that I needed to contact Kev on this mobile number asap as he had some good news for me. I had a sneaking suspicion I'd won something as i'd been getting emails through saying the competition deadline was approaching.

The thing is - it all seemed unreal, I'd thought the whole thing was a bit of an advertising scam 'sign up to this site and be entered into a draw for x prize' I've seen loads of 'em and never known a single person who has actually won anything so when I was told i was a £2k winner i was incredibly ~~paranoid~~ sceptical.

We thought perhaps it was a practical joke or a scam, we could find no mention anywhere other than on their site that Kylie was in fact affiliated with them in any way, there was little information to be found online about the charity that wasn't self-generated so 'just in case' we organised a house sitter while we journeyed down to the offices for the event.

We needn't have bothered - as you can see from the picture it was all on the up and up, the people were lovely, the village was idyllic and the 2 days were a bit of a blur.

The only problem was the me/cfs rearing its ugly little head to mar my enjoyment of the whole thing.

As any of you who've been reading here for a while know; I no longer function well in crowds - small groups of 3-5 are my absolute limit after that it gets to be a little too much for me to handle and I retreat into myself or go and find somewhere to hide and regroup.

This meant i missed out on loads over the 2 days. During the 1st evening everyone went to the pub, firstly there wasn't much seating so after a tiring day of chatting and travelling I was having to stand around and talk to strangers - an ordeal in itself.

Then I didn't get much sleep because in the night, on top of the headache I'd been fighting off all afternoon, I developed a really sore throat and couldn't breathe. we were then up early the next morning to check out of the B&B and head back to the offices for more run-throughs of the event to come.

We got to the office and it was bedlam, I elected to help out in the office rather than with the others in the reception room; 1. because I got a chair and some net time and 2. because I just wasn't feeling up to dealing with more than one person at a time.

Eventually everything started to calm down but then more competition winners started to arrive, these guys hadn't won any cash prizes but they were dying to meet Kylie, I just stuck my head down and made a bracelet with my ever present bead kit - twisting wire helps me calm down and gives me something obvious that forestalls a lot of conversation when I'm feeling mentally fatigued.

..I know I probably came across as rude or anti-social but I just really had trouble coping with all those people - a bloody joke when you consider the 6 years I spent as a bouncer but there you go, one of the delightful side effects of CFS, for me at least.

That was the last chance I had to sit down until Kylie left.

The lady of the moment arrived and the photographers went nuts jostling for position and us students crammed into the space behind them like sardines.. Not ideal for someone who doesn't like crowds, but thankfully I was the 2nd person called onto the stage so it wasn't for long.

However being on that stage felt like an eternity - as the bulbs were flashing and the guys were shouting 'top left, top left, can you look right please, now down, down, over here please Kylie' I said out of the corner of my mouth "I have no idea how you put up with this"

I really felt intimidated and under siege, it was a struggle to keep the smile on my face and look suitably thankful/ grateful to be there, how celebrity and public figures stand such an invasion so much is beyond me - the few minutes I was part of that focus was enough to deter me for life.

The picture shows Kylies response to my comment, she just looked down (yes down. In heels she's taller than me, just to add insult to injury she's also slimmer and more gorgeous *sigh*) and gave me a hug and told me not to worry it'll be over soon. She then looked back up and gave her professional smile for a couple more minutes then said 'that's enough guys' and led me to the podium to give my speech.

Yes, it was torture. I suck at public speaking - my strength lies in the written word, I'm let down greatly when it comes to speaking those words aloud. ..but I stumbled through it then fled the stage in relief.

I had to get back up there for group photos but once Kylie left I grabbed some food and tried to hide in a corner again - but reporters kept grabbing me for interviews; why, I don't know because not one of them used anything I said. But it went nice and quiet as the band started setting up and every photographer scrambled to get set up with laptops and net access in order to upload their shots.

I went and stood against one of the pillars in the corridor, thankful for the cool breeze and the lack of people trying to talk to me, I felt completely wrung out. It was just at that moment that the stinky curly haired ogre shambled past and told me 'you were rubbish by the way' as he walked through the door.

I was pretty much gob smacked to be honest, that came literally out of nowhere; I'd not spoken to the guy and beyond a little joking earlier with some of the other folks about journalists in general had said nothing that could possibly have upset him.

I told Stef about it and then put it out of my mind, all I wanted to do was lie down somewhere - I was really at the end of my limits, finally Kylie left the building and I could head into the reception room and sit down.

..Which is when I burst into tears. Stef then told Sara and Kev about the rude oik and they obviously assumed he was the cause of my upset and started getting all irate about it, which made me even more embarrassed and agitated so they left me to calm down.

After a while they asked if the associated press lass could just ask me a few questions, I answered them (apparently in too much depth according to Stef, but then I always do - I'm not a natural soundbite lass) and finally the day seemed over.

I would have loved to have stayed and enjoyed the after party, but the need to pick up Isabella from his mums combined with my oncoming crash meant that would never have been possible.

I met some lovely people and the studyvox foundation deserve kudos and all the help they can get to realise their dream; sadly I don't have the energy to help much, I have battles of my own to fight and their passion is incredibly tiring because it ignites a passion of your own when you are around them - I can't afford that kind of passion these days, it wipes me out for the best part of a week with the after effects felt for several days more.

I can only really concentrate on one thing at a time outside of my family and currently that one thing is my course.

Which is a shame because they are exactly the kind of people I would love to work for; intelligent, caring, passionate and fun loving folks.

Maybe one day i'll have the energy to share in something so full of possibility but for now it's just head down and slog my way through the year and pray I get enough credits to make the extra year worth it.

Facing reality

2010-02-15T20:35:00.002Z

This is a kind of good news/ bad news post.

I've been keeping an exercise/ food chart for the last 2 months in an attempt to track my 'recovery' from the latest ME/CFS relapse. Basically it's not good. I have spent almost 50% of the time in bed since starting the diary.

I've sat down today and had a real hard look at what I need to do with my course as opposed to what I want to do.

I WANT to get my head down and plough away at this work and graduate with the rest of my year - preferably with a decent grade but, if I keep on like I am this has zero chance of happening.

I'd thought that by carefully timetable maintenance and pacing I could do the catch-up I needed on last semester while maintaining the work load for this semester but just a glance at the red crash dots on my chart shows me how sadly mistaken I was.

Looking at the crash chart, I've worked out that I can manage AT BEST 4 hours of solid work a day - so long as I also get in at least 2hrs of rest immediately afterwards, otherwise I'm comatose for the next 2 days, some days I can manage only a solid hour, especially if I have to look after Isabella/ clean/ cook/ travel etc.

..and this is just an estimate, it may be that I can't even manage that without triggering a crash.

When Sylvia (the support lass) first brought up the suggestion of deferring my project I immediately said NO! but that's now under the heading of want not need. It sucks. REALLY sucks.

I don't know if taking an extra year will be financially possible, I know I can't get funding from the SLC for another year (this is my 4th year of student loan) so that could cause problems, but.. i guess I'll have to cross that bridge if or when it happens.

Just by deferring the project as she initially suggested will remove not only a large amount of course stress but will allow me to schedule in proper rest breaks and allow me to recover from the daily exertion of thinking/ walking/ dealing with baby/ housework and numerous other things that people without my conditions can do without needing to think about how and when they can afford to do it:

This was the schedule I was trying and failing to keep, as you can see there's not a rest break in sight:

So, just by losing that one module, I get adequate rest, I can devote the full weekend to my family instead of using those days to do homework/catch up on work I've been too ill to do in the week and will be able to gain the grades I need for a decent degree instead of struggling just to scrape a pass.

The other plus side to deferring my project is that it is based upon elements i'm studying in the other modules this semester - deferring until they are complete will leave me in a position to create an even better web application than the basic one i'm currently looking at - hopefully.

so.. disregarding the finances, it's win-win and the decision is made. here's hoping the exam board see it the same way.

Optimistic misery

2010-01-28T17:46:00.002Z

Sounds daft but it's true. I've been feeling pretty down for ages yet at the same time I'm feeling quite optimistic about the future because things keep happening that are good.

Let me explain.

The ME/CFS made a reappearance quite a few times between October and December of last year, then the Menieres made my life hell over the 3 week christmas break because I ran out of the betahistine tablets.

I couldn't get any more because of first the snow and then because I was too incapacitated to write and take in the letter to the receptionist for my prescription (couldn't find the printed repeat and my surgery asks for a signed note asking for a repeat in those circumstances)

After the Menieres kicked in, it triggered a full on ME/CFS relapse then just as I started to get over that my daughter had the flu jab and gave me a stinking head cold that once again set off the Menieres and the ME/CFS

So for the best part of 3 months I've been stuck in bed unable to do my work, stressing about my inability to do work and getting ill - vicious circle.

I missed 2 exams, web application design (WAD) and Professional issues in computing (PIC) and despite being told I could have an extension on my digital entertainment systems (DES) assignment I've been unable to do ANY work on that as I had to concentrate on my Principles and Applications of web services (PAWS) exam and the portfolio for WAD.

SO, I managed to attend my PAWS exam, I think I did enough to pass despite leaving a few of the questions unfinished (started feeling a bit pants so left the 3hr exam after 1.5 hours) and I've got about 50% of the portfolio done and an extra week from now to finish the rest - which ME/CFS allowing is doable.

My support worker and the individual tutors have been great, assuming I can get the relevant documentation for my Dr (and I can't think what reason he could have not to give it) I can defer the 2 exams and the DES coursework until summer so that I can get the new semester over and done with without the extra worry of legacy work.

On top of which, I've been approached to do a conference workshop in the summer with the 2 project leaders from the CABLE group I was involved with last year - so despite my crap health, I obviously have useful knowledge and experience which leads me to be hopeful that I will be able to find a job at the end of this!

Lets hope so eh?! I'd hate to think I was killing myself for no reason!

Push on through to the other side

2010-01-18T20:09:00.003Z

That's basically all I'm trying to do right now.

Despite everything last year, I managed to come out with one of the highest grades in our Foundation Degree class - this is an achievement of which I will always be proud!

However, this academic year has been a complete bust so far as the ME/CFS and Menieres is concerned. I had a very emotionally charged piece of news back in October/November which led to a rather hefty relapse, trying to come back from that with a ridiculous course load and a very active toddler has proven to be a task of herculean proportions.

My recovery was further hampered over the Christmas period when I ran out of the Betahistine prescribed to me to help control the Menieres - any doubts I had about their effectiveness have been firmly silenced having spent the best part of 2 weeks bedridden with dizziness, ear pain and nausea yet 3 days after restarting medication I'm back to ME/CFS 'normal'.

I've managed to obtain an extension for one piece of coursework but even so it will be tight, one exam has passed and I'm unsure as to whether I've made it on to the next module despite studying as hard as I possibly could for it, the other 2.. well fingers crossed eh?

Next semester should be better, according to my timetable I'm only in for 3 hours a day, 2 days a week which means I'll be able to actually pace myself and have set mealtimes again; regularity and a decent schedule are half the battle in managing this condition I've found.

..so lets just pray I've managed to get enough marks to pass the current semester because if I have to re-take anything I may as well give up now.

Am I unemployable?

2009-08-17T23:23:00.002+01:00

I'd forgotten just how horrible a full on relapse is.

The fizzing sensation in your limbs, the terrible heaviness of everything, the aches.. it's an act of will to even type as all my hands want to do is give in to the pull of gravity - no wonder we're so frikken tired all the time, we're constantly fighting to move; every action is conscious.

..by that I mean normally when you want to pick something up you just go to do it but when everything is this hard it's like you..

imagine an action is a calculation; lift arm + open hand + guage distance + use correct force = object lifted.

Normally that calculation will occur without you even realising it, but right now I'm still computing the steps needed to complete the action as i'm taking them.

It's like i'm an overheating computer with a broken fan that has too many processes running in the background; i'm on a go-slow and things are starting to malfunction.

bah! i doubt i'm making much sense.

Lets just say i'm starting to really worry about my ability to successfully complete my degree next year; never mind my job prospects afterwards! who in hell will employ someone that will have to take days off because they physically can't get out of bed? who could 'crash' at work and will need to lie down, unable to communicate in more than grunts and will need carrying to a car to go home?

Working from home is my only real option. But will it pay enough? and to do that I'd need to move somewhere that we had an extra room so I could work undisturbed - how can we afford that? we can only just afford this place.

*sigh* I'm beginning to wonder why i'm bothering with this degree. I'm going to be stuck in the me/cfs trap forever. Please god let them find a cure!

Prompted by questions

2009-05-31T21:02:00.003+01:00

ME/CFS is a difficult beast to describe, not only are the symptoms varied - both in type, frequency and intensity, they can differ from person to person.

On top of that, there are things to take into account depending upon what 'stage' of the illness you are at - and I don't mean 'beginning, middle or end' because for a person with ME/CFS there is no end and the beginning and middle are just an ongoing cycle of good and bad periods.

No by 'stage' I mean one of the cycles that exist in my mind regarding my own personal experience of it:

Denial
By denial I mean, you and everyone else disbelieving it's something other than stress/ over work, thinking that you can just push through it and then wondering why you feel worse every time you do something.

Boom and bust
You have good and bad days, on the bad days you stay in bed - on the good days you try to make up for the bad days and over do it.

Limbo
You finally get a diagnosis but they can't treat or cure you, no one knows or understands what is wrong with you and you try every 'cure' you hear about following extensive research online

Fear (masquerading as pace)
You've tried CBT and GET and you got worse, you cut out caffeine, dairy, sugar, fast food - anything that might be a trigger, you stop going out, you barely do anything around the house, you just spend 90% of your time 'resting' - all because the thought of triggering a relapse that makes you worse than you are now scares the shit out of you.
Getting past that is the hardest part of this illness.

Acceptance
You realise that it isn't going away and that living in fear of a relapse is what is crippling your ability to enjoy life, you start to do more and just succumb to the 'crash' when it happens.

Boom, bust and pace
You start to do more again but keep another exercise diary so you can try and judge the level of activity you can take before you crash, after a few weeks of this you sort out a routine, get depressed when it doesn't seem to help - at this point you either go back to the fear cycle or move properly onto pacing

Pace
You start with one activity a week - mental or physical (its how I did it) and cut it down into individual tasks that you spread out over the week. a couple of weeks later you up it to two activities - again split into tasks. The basic rule that worked for me was 20mins work followed by 20mins rest (and rest was sitting down and concentrating on my breathing - try hard to think of nothing else)

It took me around 2 years but I was finally up to the stage of doing a 10wk course (4hrs a week) on using Photoshop and dreamweaver - I was knackerd but being with other people and using my brain again made me feel better than I had in a long time!

Some people find it harder to cope than others for various reasons as it's really hard to come to terms with losing your life by degrees and its bloody hard work clawing it back - especially when you don't feel as though any progress is being made

This is where the exercise diaries are golden, I look back at my blog in the early days and look at the medical file/ benefit claim file and other documentation and can't believe how much I've improved.

I put it down to three things:

Diet; I've cut out alcohol, most caffeine (we don't count chocolate do we folks) processed foods and carbonated drinks (well, naturally sparkling water like badoit is still on the allowed list, dandelion and burdock is not)
The love of a good man; Stef has not only been the person to carry me to and from the bathroom during the bad times, he's seen me through the intermediate stuff as well, he took on the housework and cooking so I could study and build up my self confidence again, he's pushed me to try harder and been there to pick up the slack when doing so has made me crash, making me feel that it's ok to try and crash - so long as I try. He's always telling me how proud he is of me and how great I am.. Without him I'd still be stuck in the fear cycle and that is truly no way to live.
Sheer determination combined with a positive attitude; easier said than done, this illness will beat the positivity out of you without somebody like Stef cheering your corner. You need help and support all the way - ESPECIALLY when you hit a bad crash following a really good spell.

I'm not cured, no way - but I have a pretty fantastic life despite it, my daughter is proof of that:

WooHOO! ..and BACK!

2009-04-14T22:35:00.002+01:00

Yup, my brain appears to be functioning again.

This last week I've managed to complete my first programming assignment, most of the final report for my work based learning project (including poster design) and today I completed 1/3 of my first multimedia assignment - if things go according to plan then that one should be completed and submitted by this time tomorrow evening!

I still have 2 HCI assignments to do, stats to gather so that I can finish my WBL report and more content to add to the WBL website - all before Monday.

No sweat, 5 days is plenty of time so long as the CFS/ME stays away. I figure Thursday for HCI1, friday for HCI2, Saturday to collate stats and finalise my report and Sunday to finish website content and poster design.

Then on Monday I get my poster printed and laminated, submit all work and et voila! I'm bang up to date again and looking to get the GOOD grades!

..all I have to do then is buy an outfit suitable for a business presentation, start and complete the 3 assignments I've not even looked at yet because the deadlines aren't until May, revise for exams and FINISH THE YEAR!

..I can't wait!

I sooo deserve a holiday!

Bugger.

2009-04-03T20:47:00.003+01:00

I went to the doctors the other day to get a letter for college so that I can get a blanket extension for all my coursework. The previous menieres/ ME/CFS relapse certainly did me no favours regarding deadlines so I need a note medically validating the fact that I'm useless.

..ok, not 'useless' but very much not up to speed.

While there I mentioned the trouble I've been having with my left arm and it turns out I have rotator cuff strain - all I know is it hurts, but then with the me/cfs aches I'm kinda used to that - it was proved beyond a shadow of a doubt during labourwith Isabella that my pain threshold is actually pretty high (despite opinions to the contrary) but I figured I may as well mention it - good job I did, if left it could turn pretty nasty apparently..

Unfortunately she seems to think that I could have post natal depression; I think she just doesn't know enough about the illnesses I already have. Yes I get down, depressed and hopeless. Yes I have feelings of low esteem, tiredness, trouble sleeping, little energy or appetite and have trouble concentrating on things - but show me one person with a chronic fluctuating illness who doesn't experience all of these things on and off!

Whatever happened to pacing?

2009-03-07T12:08:00.003Z

I've not managed to find a rhythm since having Isabella. I got too used to being 'normal' again while pregnant and seem to have forgotten my coping mechanisms for the ME/CFS.

This is not good.

For example, last month I overdid it, really overdid it.

On top of spending practically 8 hours a day solidly working on my coursework then coming home and washing up, seeing to Isabella and being sociable, I also managed 2 consecutive nights out.

This started affecting me and I've been having to lie down for an hour or so in the day again, but did I cut back/ slow down? No.

I continued to stress about assignment deadlines and work solidly whenever I had the chance and we weren't visiting the in-laws.

This is the real reason my last post happened, I'd handle full time care of my daughter just fine - if I cut back on everything else.

I was supposed to go out last night but because I've been having a full on crash at least once a day since last week when I had Izzy to myself. I just didn't want to risk it, I still get upset thinking about the last time I crashed in a nightclub; how an unknown male had his hands all over me and was kissing my neck while I was unable to move or fend for myself - not the most pleasant experience I've ever had!

The problem is, I don't know how to throttle back - I have so much to do and so little time in which to do it:

There's my work based learning project; I still have to finish uploading content to the website, create questionnaires for the users and write a report based on the feedback to go into the relevant part of the final report (which I need to have completely finished in 3 weeks time)
I have a multimedia project in director to complete - the draft by Tuesday and the complete project by the end of the month
A text based game to create in Java, the design has to be done by Wednesday and the actual game programmed and written up - by the end of April
I have a HCI project to do - by the end of the month
I'm organising a group for the cable project at uni and all of this needs writing up and sorting out by the end of june
I'm student rep and am spending a lot of time at meetings at the uni

..and all of this is on top of a home life, I need to spend time with my daughter, we have to take her to visit people, the house needs cleaning, we have to shop/ feed and otherwise get on with things.

is it any wonder the crappy illness has come back and that the menieres disease has kicked in on top?
I'm stressed at the thought of missing deadlines - especially now that I've fallen further behind as I couldn't concentrate on anything last week so no work was done.

My arms feel like lead, I'm forcing myself to get on with stuff even though I know I'm going to suffer for it. I need help! The way things are going it's only a matter of time before i have a full on relapse and end up bedridden again.

But I can't seem to shut off, these things NEED to be done. Stef can't work because he's looking after Izzy, but I don't get DLA so he can't get carers allowance, he can't get JSA because apparently my student loan is enough for us both to live on (um.. hello?! it's a DEBT it's not income, it's fecking disgusting that if we were living apart I'd STILL get the loan but he'd also have an income) and because he's not getting DSA we still have to pay full council tax - despite his having NO income and me being a student.
So because I'm having to use my student loan to house and feed our family I can't afford to get the new laptop I need and I'm having to make the trip to the uni library every other day so I can use the software I can't afford to buy and look at the REFERENCE ONLY books I can't afford to buy which expends more energy that I don't have.

It sucks.

I'm just praying that I will end up with a job that pays enough to make this all worthwhile, and that I have the energy to actually do the job once I get it!

..as it is, the loans which are paying to house and feed us won't be paid off for at least 55 years according to the msn student claculator - and if I have a relapse we are royally screwed as if I can't attend uni I won't get the loans, by the time the benefits orofice get their finger out we'll be homeless as I can't see the landlord waiting 6 months for backdated rent seeing as he didn't want to take on dss tenants in the first place..

Is it any wonder I'm stressed?

A tad dejected

2009-02-25T13:25:00.001Z

Yesterday is the first time I've had full time care of Isabella since she was born (from waking to bedtime) and it's only because Stef is helping his sister move house. It was great and I can see why he's so happy to stay with her instead of working and leaving her with his mum as we'd originally decided.

The only problem is; that one day has left me bed bound - full on CFS/ME crash happened in the night and I'm still recovering from it - it's also had the knock on effect of setting off the Meniere's so I'm basically deaf and knackered today.

God help me when she starts crawling/ walking - how on earth can I hope to be a 'proper' mum when just one day of caring for her leaves me bed bound?

He's helping his sister again today so Isabella is with his mum and I'm tucked up in bed with the laptop, mobile phone, packed lunch and bottled water attempting to concentrate on the HCI assignment due in today and the questionnaire I need to email out to my WBL client for her students.

*sigh* at least I'm not a single mum, I'd be hospitalised and she'd have been taken into care by now.

What's worse is the 2 lessons I've missed today because of this are the 2 I most need to attend! It's frustrating to say the least!

..but it could always be worse, I have a roof over my head and food on the table beside me, internet access (always a good thing) and I've got until 11 to get the HCI in and even if it isn't to my 'usual' standard it's 'only' 20% of the mark, I've got tomorrow to rest up ready for Friday and a gorgeous daughter to cuddle and love - when he brings her home
So.. Work!

Back to normal

2009-01-19T21:50:00.002Z

It's been nearly 5 months since my daughter was born, in that time I've tried to get to grips with motherhood whilst staying on top of my coursework. It hasn't been easy.

I missed the first 6 weeks of term because I was breastfeeding, that and I was just too knackered to consider anything outside of newborn hell - ME/CFS had prepared me for being constantly knackered but this was even beyond that because of the emotions.

I now know how to describe CFS to any couple who've gone through the child rearing process, well, what the brainfog and fatigue is like anyway; Imagine having the flu 4 weeks after your child was born, just as she's coming out of a growth spurt..

Horrible isn't it?

Sadly, despite managing to boom and bust my way through the rest of semester A, this last week it has all caught up on me in a big way. I really can't tell if it's just the menieres or the ME/CFS any more. I've had definite menieres attacks - at least one every day for the last week.
I've had dizzy spells, nausea and ear pain, tinnitus, splitting headaches and full on fatigue in waves.

2 days ago was definite ME/CFS as I awaoke at 06:30 to go and make Izzys bottle only to find I couldn't get out of bed. I was stuck there until just gone 12 when I managed to haul myself along the walls to the bathroom and then promptly collapse on the couch until around 9pm.

The only interaction i had with my daughter was when Stef laid her between myself and the back of the couch for her afternoon sleep. This is getting to be far too familiar.

I've hardly dared to pick her up because:

she is now so heavy I struggle to hold her for long periods of time and
The dizzy spells have been coming on so quickly I worry about stumbling with her in my arms

#2 is a very real worry as I'm currently covered in bruises from my efforts at walking around the flat without banging into the bed/ door frames/ cupboards.. It's quite depressing.

What is worse is knowing that there is little I can do about any of this, I have an appointment to see my doctor in a few days, I'm hoping a new lot of betahistine hydrochloride will help get the dizzy stuff under control, I don't remember it having much affect last time but I hadn't been taking it for long when we found out I was pregnant and had to stop medicating.

Lets just hope that the last couple of days rest is enough to tide me over, I have a test on wednesday and an exam on thursday - a crash before or during either of those would be catastrophic for my chances of passing this course with any kind of decent grade - I'm only just managing a pass grade as it is!

Nearly there!

2008-08-12T08:07:00.002+01:00

It's been a long and tiring journey but the end is finally in sight! Just 2 weeks of this torture left and I'll have more sleepless nights - but at least I'll be able to sit and lie down comfortably again, I can start taking my medication to ward off the menieres nastiness that's been driving me mad all month and I'll have a baby!

I can't believe it, even now I'm the size of a house and the damned thing is trying to punch a hole through my gut I still catch myself being amazed at the thought of me with a child.

It's hard work though - I’m forced out of bed at stupid o’clock every morning by the demonspawn (after too little sleep) to walk in a figure of eight around the living room for hours rubbing my belly and muttering pleadings to whatever god may be out there to let me get this portion over with, I’ll get maybe 10 minutes ease every now and again by falling on my knees to lean against either the ball or the beanbag for a rest and then the squirming starts and I have to get up (with help, I'm now incapable of reaching a standing position unaided) and walk around some more..

Seriously - it’s killing me!

..and that’s before I even mention the acid! heartburn nothing! I have some really nasty strain of acid that eats its way up my throat and forces itself into my ears, I’ve had more menieres attacks in the last month than throughout the rest of the pregnancy combined because these acid attacks seem to trigger ‘em. I’m relying on mint choc chip ice cream and Gaviscon at night to ensure I get at least an hours kip in before the obligatory toilet visits.

I just keep telling myself that it's not long to go - the leaky nipple thing combined with frequent braxton hicks contractions is evidence of that, as is the way my belly has dropped - that's why I can't sit down anywhere, the weight of my belly crushes my thighs and cuts off circulation, in order to get any rest I have to go lie on my side (for about 30 minutes before having to switch because the kid hates me resting!)

Thank god the CFS has only shown its face a couple of times, it's unpleasent normally but when you're aware of discomfort and can't do a thing about it.. well, here's hoping it stays 'gone' after the birth, I think the menieres is going to be tough enough with a newborn in the house without the extra worry of a crash.

More pregnancy stuff

2008-03-31T13:17:00.002+01:00

It's amazing how in just the space of a few months my whole outlook on almost everything has changed.

I've lost interest in practically everything none baby related, my blogs and my website have fallen by the wayside despite the 4 years I've spent building them up, I have a fairly strong readership over on my main blog and my web presence is pretty impressive for a dabbler - but just lately I've given real thought to just ditching it all when my hosting expires. I'm just not that person anymore.

I'm having to force myself to concentrate on college, I just can't garner any enthusiasm for it at present as the goals I had have changed - yes working from home is still an achievable goal but I just can't picture it the way I could before because my head is so full of the realities of childrearing - web design and programming are coming in a very poor second to that image.

Even my views on things have altered. I've been very open on the web up to now and had no problem sharing my life with people, yet suddenly I'm looking at things differently and censoring what I have to say - or just not saying anything at all.
I knew having a child would change things, what I failed to realise was just how much of that change would involve my view of myself.
Perhaps this is what growing up is all about? I'm not sure where this journey will take me but it's obvious now that it's in a different direction than I'd ever really imagined before.

On the physical side of things, I'm definitely on a boom/bust cycle, I'm finding it impossible to pace because I'm having trouble resting; I'm tired and stressed about our current living situation because time is running out on finding somewhere, there's only 4 months to go until I'm due to give birth and I NEED to be settled at least a month before that happens - and my temperature control is even worse than with the ME/CFS. I heat up to the point of passing out, yet if I strip off/ go outside then within the space of minutes I can be shivering again.
Doesn't help that the whole family are out for the count with the flu, I've been avoiding them as much as possible in an attempt to ward it off - flu is not fun at the best of times but while pregnant I can't have decongestants and the like and I'm almost incapable of breathing through my mouth!

Am I the anti-christ?

2008-03-18T11:48:00.002Z

Went into Hatfield yesterday for an impromptu programming study group (i.e. me and Johnella) got home to find everyone rushing around because we had to go to mass - reconciliation or something (I'm not catholic so it's all a tad confusing) so I wolfed down some tea, got changed and off we went.

I have to say, the church is quite pretty and for a change the mass was a short one, but obviously I had to gee things up a bit.. I only went and fainted! It was so embarrassing - I've had dizzy spells and I'm used to the me/cfs crashes, but I never faint! ..And of course we had to be sat in the second row instead of nice and anonymously at the back! I don't know what caused it, one minute I'm kneeling next to Stef for the prayer and finding it hard to breathe, then I get a sharp pain in my guts, a roaring sensation in my ears and everything fizzles out. So while Stef and his dad are trying to hoist me back up onto the pew, his mum rushes off to get me a glass of water and I'm coming around just as everyone is queueing up for the 'laying on of hands' so I ended up sitting there feeling mortified as every single person in the church is parading past our seats and trying not to make eye contact with anyone - it's bad enough feeling ill without a couple hundred people witnessing it!

Thankfully mass ended not long after that so we escaped, I got home and had to rush to the loo for a bowel explosion (hey, I like to share!) and went straight up to bed feeling awful.
Needless to say, the antenatal yoga this evening has been cancelled and I'm trying to take it easy - Stef and his mum are at the church now putting the finishing touches to the Easter garden and I'm trying to decide whether it's worth calling the Dr's or not. I still feel a bit under the weather, a little nauseous, tired and light headed, but nothing more than I've been feeling on and off since getting pregnant anyhow. I don't think I have a temperature (mental note, get a thermometer) it was just a one off (I hope) my thinking is rather than get all panicky, just see how I go - it could have been the heat, incense, drop in sugar levels - anything. If it happens again then I'll go crying to my doctor.

Pregnancy and CFS

2008-03-14T22:15:00.002Z

I've been neglecting this blog as my main one has been getting all the love of late, it's where I broke the news of my pregnancy and between it, my college blog and the pregnancy journal I've had little thought to spare for this poor thing.
It seems all I can think of is this little creature to the exclusion of practically all else.

Ok so with the CFS crap I should be used to feeling tired, but it doesn't make me feel any better. I just need to sleep.
The menieres thing has been playing up again and I'm constantly just wishing I had somewhere I could go, I can't relax here - I'm too aware of Endora bimbling about downstairs with the expectations of me helping out around the house
I just really wish we had our own place. I'm stressed about everything, home, college, family, the future..
I'm trying REALLY hard not to be because I know stress is really the worst thing for me - it's what keeps exacerbating all my health issues and I'm starting to worry about the effect it may have on the baby (so great.. something ELSE to worry about)

I just wish I could sleep - one night of decent uninterrupted sleep.. That would be bliss.
The thing is, I wake up from dozing because I need the loo - but when I get to the loo I can't even force out a drip. it's frustrating as hell.

Yet despite the lack of sleep, the stress, the cramping and dietary weirdness I think it may be true what they say about pregnancy helping CFS because despite living with the kind of stress that would normally have me bedridden and crying, I'm still able to function.

I'm wondering if it isn't more to do with the folic acid supplements than the pregnancy itself though.. I have a vague recollection of some vitamin shots being offered to some CFS patients in America or Canada and the recipients showed definite signs of improvement - since every woman wanting a healthy baby starts taking a minimum of 400mg of folic acid a day, perhaps that could account for the added resistance to the fatigue..?
Who knows? If I could be bothered I'd google it and check but I'm shattered.

Yup, I'm bloody knackered. But going off the other pregnancy journals I've been reading, that is applicable to every woman partaking in the baby cooking project regardless of health.

I'm just tired, constantly. I think I used up all my excitement the day of the scan because at the moment I don't really feel much of anything - aside from tired and constantly annoyed and wanting to just stay under the covers and shut the world away.

Seriously, I cannot concentrate on college at all - I have assignments due in and instead of working my arse off i'm catching myself thinking 'sod it' and 'what does it matter'.

It's worse than the brain fog you get with CFS - at least with that there is a sense of distance, it's frustrating but at least you can tell it's a physical manifestation because you're not able to take things in. With the pregnancy fog I can take things in but a second later I've forgotten what it was and I'm so distracted it's untrue, I can't focus on anything.. it's hard to really explain the difference between the 2 mind states, I just know that now if a midwife asked me to describe CFS to them I can say "imagine all the mental symptoms of pregnancy combined with the physical symptoms of the flu, add a shot of morphine to the mix and there you have it - instant CFS!"

But i'm still managing to get up and (for the most part) attend class, i'm communicating well and still keeping it together - under these circumstances, prior to the pregnancy, that would have been a miracle.

What's the point?

2008-02-09T13:14:00.000Z

I'm fed up (again) all I can hear in my right ear is the muffled boomy sound of my own heartbeat, it feels blocked which in turn is making my throat and nose feel a tad bunged up - even though they aren't.

But it's not that that's making me fed up. No.

I have the place to myself, singsnap has dozens of new songs that I want to try and I can no longer sing for toffee because I can't hear properly - I can't judge the tone or pitch so I sound AWFUL! That and it's actually uncomfortable because when I sing or speak my right ear booms and pops like a speaker with a dodgy cable, it's distressing!

I wouldn't mind but singing is the ONLY truly enjoyable activity I had left. I can't go for long walks anymore, adventure holidays are forever off the list and cycling is also out, martial arts are forbidden and dancing has been lost to me for years. It seems that whatever the CFS/ME hasn't already stolen from me this Menieres disease is claiming instead.

*sniff* even going to the cinema is a bit dicey because the volume levels can be quite painful to me now.

At least I still have my eyesight, if I lost the ability to read as well I'd say just shoot me now.

Lately I've missed several classes due to the dizziness, I've just not been able to get out of bed and I've felt rotten. Headaches have plagued me for weeks and I'm just fed up with everything, I'm listless and have no enthusiasm for anything - I have work that needs doing and instead I'm playing texttwirl on facebook or browsing amazon and the like.

I just don't care anymore. I'm sick of being ill. I'm sick of trying and getting nowhere and I'm just SICK of life.

..Oh and according to the DVLA I'm banned from driving because of the damned thing too.

I just hope that this is all worth it, everything happens for a reason so there must be something good to come out of this - there has to be!

Hospitals and college timetables

2008-01-31T13:13:00.000Z

I've just been to see my first neurologist; a rather pleasent and friendly jewish man who swiftly ruled out any possibility of my having epilepsy *happy dances*

He not only went through my medical history he asked questions about my background and upbringing which seemed a little odd.. He then said that what I was describing was definitely CFS, while he expressed a couple of doubts on my ability to cope with a couple of things he did seem quite.. 'impressed' is the wrong word but it's the only one springing to mind so it'll have to do, he seemed impressed with my progress and how well I am coping in the main.

That gave me a bit of a boost I have to say ;)

Yup, I'm liking the guys they have at Watford general - so far i've been impressed with the friendliness and attention they take of their patients.
When I went to see the ENT guy I was impressed with the efficiency of the department even though I was disappointed to learn there is a 95% chance I do have Meniere's disease - I've been put forward for an MRI but for many reasons the neurologist seems to think it's unlikely I'll be called for it within the next year as they tend to only do them when there is a chance of uncovering something serious - since this is more annoying than serious.. Meh, at least I'm not epileptic eh?!

..and I can DRIVE!!!! That was the best news I've had in WEEKS!

Turns out I made a mistake with my timetable too - I'm not in 4 days a week. Next week I'm in tue/wed/fri then we have a week off for reading (ie they're low on rooms again and exams are taking place) then when we go back I'm in wed/thur/fri which means I have LONG weekends!
*grin*
Things just keep getting better and better - all I need to cap this mood is the news that we have somewhere to live! While it's good of the in-laws to put us up I'd not imagined we'd still be here now, 5 months is a long time to share living space with people!

pacing and schedules

2008-01-21T22:11:00.000Z

I've been dealing with dizziness and nausea and intermittent hearing loss/ tinnitus for the last 5 months but relief is at hand! Tomorrow I get poked and prodded by an ENT specialist at Watford general hospital.
Yes, they'll be trying to rule out meniere's disease but either way I'm just hoping they can rid me of the dizzy/sick thing.

Despite regular bouts of fatigue and acheyness plus all of the above I've managed to get consistantly high marks in every module of my course and more impressively on the ME/CFS front - I have an attendance rate of over 94% (i'm so proud! *grin*)

I'm not sure how I'll fare on the new timetable though, before I was in on a mon/wed/friday now I'm in at the crack of dawn on a tuesday for half the day, wednesday afternoon, thursday morning and all day friday.

It may work out better having 2 half days but i've gotten used to my rest days in between classes, guess my pacing schedule is really going to take a beating!

Smug and fed up - now there's a combination.

2007-12-06T10:33:00.000Z

On the one hand I've just received my programming marks from college - I'm looking at a top end B or a low A for that module, the same can be said of Maximizing potential and I'm pretty certain computer based systems falls into the same region, it's only databasing that's worrying me.

The reason I'm smug is that I've managed these marks and at least an 80% attendance record despite feeling like utter shit.

That's right, crap kaka, doo doo shit.

My ears are driving me nuts, I'm not sleeping properly and on top of that I have this damned nausea and dizziness to contend with.

The ME/CFS stuff is feeling the way it did when I first came down with it, only I know better now so I'm managing it a lot better.

When I first became ill I spent most of my time in bed, a crash scared me so much that I'd revert to doing absolutely nothing for fear of bringing on another one - that and my feeding habits were atrocious, I was living on takeaways and ready meals because I didn't have the energy to cook or shop.
Now I'm fed homegrown wholesome food on a regular basis, I make myself get up as soon as I'm able and I don't shy from exercise, I just try to balance it more.

What's pissing me off is that I'd reached the stage of managing it so well I was leading a pretty good life, now this has kicked in; when I'm not at college I'm heading home to crash, I feel slightly sick all the time and if it's not tinnitus giving me grief it's the physical assault of people talking.
I'm just sick of being sick.

I know everything happens for a reason, I just wish I knew what the reason for this was so I could handle it with better grace.

I also can't start driving lessons again because of it - which has sparked my paranoia, something REALLY doesn't want me on the road!

For years it was financial difficulties that prevented me from having lessons and taking my test, when I finally decided that was a rubbish reason and ploughed ahead with motorbike lessons and passed my CBT; 3 weeks before my test date I crashed and ended up on crutches, 2 years of physio later, finances again dictated a wait and then I became ill with ME/CFS.
After a couple of years of nastiness with that, I felt well enough to try again and got a peri-anal abscess and had to have surgery on my backside (so definitely no driving if you can't sit down) That brought about an ME relapse, then I got an ear infection that brought about another relapse and.. oh look! I'm just getting well enough and financially stable enough to try again and I'm struck down with a possible ear disease that will render me permanently unfit to drive.

Joy.

I'm doomed to relying on public transport (which makes me ill) and the good will of others to get anywhere. *sigh* so much for independence!

Ménière's disease

2007-11-28T21:37:00.000Z

This is what my lovely new GP thinks could be wrong with me at the moment.
The antibiotics have done nothing and if anything it's getting worse, but my ears look fine. Having now read all of the NHS direct information about the suspected problem I'm depressed:

There is no cure for Ménière's disease. However, your GP and ear, nose and throat (ENT) specialist will be able to help you manage your symptoms. They will offer advice and information that is tailored to your individual needs, and develop a management plan that will help you cope more effectively with your symptoms.

Does that sound familiar or WHAT!
Exchange the words 'Ménière's disease' with ME/CFS and the ENT specialist for Neurologist and there you have what's been plaguing my life for the last 3-4 years!

Added to which I stupidly mentioned the discussion I had with some of the support group about what happens when I crash and how a couple of them didn't think it sounded like ME but more like epilepsy - I was cursing myself within minutes for mentioning it as instead of shrugging it off as I'd expected him to he said 'Disregard any of your previous notes, we'll take everything as new onset, I want to test you properly to rule out that possibility'

Great.

So now I'm going in AGAIN next week to be tested for epilepsy, I can't remember everything he said because I was too stunned by how quickly he changed from concluding the appointment to telling me about the tests and asking me to book myself in for another appointment.
I also can't help feeling like a hypochondriac again, why did I open my mouth? It's that STUPID wish that I had something treatable instead of this damned curse of an illness.

I'm pretty sure I don't have epilepsy, the crash thing would have been picked up before now surely?! ..and besides, what little research I've done (hurrah for DR internet eh?!) says that those kind of 'episodes' happen to kids, I've not seen mention of adult onset before.
I just feel that now I'm wasting his time with pointless tests all because I couldn't keep my bloomin' mouth shut.

I suppose I should be grateful that I have a Dr. who is willing to do anything to reassure me about any suspicions or.. well, anything.
But I would have accepted him telling me that it's unlikely to be absence seizures at my age, that's pretty much all I wanted him to do if I'm honest, just because I'm resigned to the CFS/ME label doesn't stop me having ridiculous dreams of the "you've been misdiagnosed, have some pills and be cured' conversation.
Perhaps THAT's what I should have said as I was leaving instead of "a few of us were comparing symptoms.."

Meh, I'll learn one day. I guess now I just wait and see what these blood tests show up. At least the last lot were fine, normal blood count so I'm NOT anemic, pressure is a bit low but nothing to worry about so it's just the ear thing.
Joy.

Antibiotics

2007-11-24T21:43:00.000Z

So far so good.

I've just been less able to cope with the 'fatigue' (you know, that bone sucking weariness that leeches at your will to live) and the dizziness and nausea are back full force - I also feel as though my eardrums are going to pop every time I swallow - but that'll be down to the ear infection fighting back. on the plus side, the aches are not as severe as usual, my elbows still twinge but it's not the 'normal' burning stretchy ouch I deal with during PMS week.

I got an extension on one assignment, I figure I'll be fine with the presentation and I've already taken my missed exam, I just need to give my tutor a copy of the docs certificate for the examining board to ensure I get marked as though I were present first time around and not at the capped 40% resit scheme.

Still awaiting response from Minerva house about my DSA application, figure I'll phone 'em on Tuesday to make sure they received it, they should, it was sent recorded delivery.
As soon as I've had an assessment for that I'll know where I stand with everything else, best case scenario is that I get help with transport, a laptop and laptop desk suitable for use in bed (or just the desk, I don't mind getting my own laptop) and an ergonomic chair.
Worst case is I get nothing and the college stop helping me with extensions etc etc.

Meh, we'll see. I just want it all sorted before my exams.

Cack and double cack.

2007-11-18T18:01:00.001Z

I've now had this ear infection for at least three weeks.
I've a prescription for antibiotics to pick up but I know that as soon as I start taking them I'll be completely buggered and the next 2 weeks are pretty vital as far as college goes, I've 3 assignments due in and tomorrow evening I'm taking the exam I missed 2 weeks ago due to my mini relapse.

I guess I'll have to fill in an extension form for each of my assignments and just succumb to the effects of the drugs, I'll go and speak to Thelma tomorrow about it, hopefully she can square it with all my tutors so that I can have an extra week in which to do the work - it shouldn't be a problem seeing as the Lovely Dr. Bhatt gave me a sick note that covers me until the end of next week - technically I don't have to be in to any of my classes until that runs out, I just hate to miss the lectures because I don't want to fall behind!

It's a toss up really, do I postpone taking the antibiotics and hope the recurrent dizziness and nausea/ fainting from the ear infection hold off until I've done the assignments or get them and take them and just give up any thought of doing anything for the entire week because I'll be too bushed to speak..?
God knows why antibiotics have that affect on me but they do. *sigh* no visiting or anything that week, at least I'll be able to do some beading if I'm propped up in bed, nothing worse than the listless fogginess - although I've never taken them with VegEPA so perhaps I'll be ok.. We shall see!

I'm not starting them until Wednesday anyhow because I've decided to wait until after my blood tests, no point making life truly awful for myself until I have to eh?!

updates and whingyness

2007-11-02T14:08:00.000Z

I've been up and down for the last few days, constantly tired and aching, today the pains were so bad I couldn't get up, my knee especially has been playing up and i'm limping again.

Just as well I'm allowed a lift key at college, I really couldn't face the stairs today, I did force myself up and in because I had a test this morning, the temptation was there to just flake as I know I'd be allowed to redo it at a later date, but it's in a subject I already struggle with so I need all the help I can get.

I'm also getting a tad fed up. All I do is college work and then go home to crash, that's assuming I'm not working on college stuff at home.
I need a night out but I don't have the energy (or the income) I need a break.

I also need my own space. Singing is the one sure fire way I have of de-stressing and brightening my outlook, I've been unable to sing for at least 2 months because I'm living in someone elses house and feel I can't make that kind of noise.
I can't go to a karaoke because I'd be going by myself, not advisable at present (even if I had the confidence to go to a pub alone and sing in front of a crowd) I'm just royally fecked off.

..But at least i'm doing well on my course - even databasing is coming to heel, by christmas I should be able to create a fully operational shopping database. I just wish I had a life outside college.

*sigh* i'll build up, I guess I should just be grateful i'm at the level I am, as long as I can hold this and not relapse i'm doing well. Things'll pick up once I have a measure of privacy back in my life again.
Then I'll be able to sing to my hearts content!

Vegepa and crashing

2007-10-28T10:15:00.000Z

I've once more tried to see how I go without taking supplements. It's not good.
The VegEPA really do help, when I'm on them and I crash (as I did in class on friday last week.. Most embarrassing and more than a tad worrying since not 30 minutes earlier I'd been alone on public transport) I'm peripherally aware of what's going on around me, yes I'm embarrassed because of it and yes I cry, but at least I can make myself understood (eventually) and I can get help and the crash also ends much sooner.

If I've run out of VegEPA or like the last few days forget/ don't take them - when I crash it's much more serious. Yes, my limbs don't work, they're too heavy and I can't move - but there the similarities between a VegEPA crash and a non-VegEPA crash end.
It's like I'm on high dose painkillers and I'm cushioned from everything - ok so I can't move, I'm uncomfortable - but I don't care. I'm completely detached from everything - I could be dying or lying naked for the world to see and it wouldn't matter, I'm not really aware of anything around me, or if I am I just couldn't care less because I'm locked in some kind of immovable armour that's shielding me from the world at large.

I think that's why the non-VegEPA crash lasts longer, when I'm aware I have an incentive to come out of it. It's quite a strange one really, if I fight it it lasts longer and exacerbates all my other symptoms but at the same time if I don't fight it or even seem aware that I could, then I don't come out of it for a good hour or two - and even when I do I'm not 'with it' for the rest of the day.
That doesn't make sense does it..? ok, in a slightly more understandable format:

With VegEpa

Sudden wash of exhaustion, enough warning to sit/ lie down and tell someone what's happening before everything is too heavy to move. I'm aware of my surroundings and able to speak though it's slurred and hard to understand. I'm aware of discomfort and uncomfortable positions, if I don't fight it I'm out for an average of 20 minutes. When it's over I feel shaky and a little unwell but I can at least interact 'normally' with people again.

Without VegEPA

Exhaustion comes on suddenly, no warning. I'm completely detached from everything I can't move and I don't care. No matter what position I fall into I'm 'happy' to stay that way, it's like I'm cushioned from the knowledge of pain and discomfort - I know it's there but I can't be bothered to do anything about it. I can only communicate in grunts which means only my carer (stef) can understand me. It takes a minimum of an hour to regain movement and even then it's only enough energy to move into a more comfortable position, I'm usually out for a minimum of 2-3 hours though it can last the entire day as it comes and goes.
When it's over I'm uncommunicative and remain slightly detached from everything, I can move but everything irritates me and I don't want to be bothered with anything.

I've tried doing without the supplements before but I've never bothered to record the results, just the knowledge that I'm better with the pills without remembering why was enough - now though I feel the need for the record, I don't want to attempt this experiment again, with college I've too much at stake, I need to be aware and functioning. While it's kind of 'nice' to let everything go and feel completely detached from the world now and again that's not how I want to live my life - I had that fog for a year or so when I first started dealing with CFS/ME and it confused the hell out of me, I was upset and in pain all the time and I REALLY don't want to go back there.

catch up.

2007-10-14T11:03:00.000+01:00

I've been a tad on the whacked side this week, Wednesday was pants as I nearly crashed in class, managed to fight through but felt awful right through to Friday morning when I was riding the biggest high I've had in months - was practically dancing up the high street and barely containing the songs pouring through my mind in a happy stream.

That didn't last of course because I've discovered that I'm not a fan of databasing, methinks I'll be outsourcing that particular job should I ever be in a position to do it. By Friday night I was shattered and yesterday was basically a washout as I spent most of it in bed.

I did get up at 7:30pm though, Stef took me to the local cinema to see 'Run fat boy, run' I have to say I really quite enjoyed it there's a brand of humour for everyone in that film, it also highlighted how strange my sense of humour must be because at certain points I was the only person laughing while at others everyone but me seemed to be laughing.. ah well, m'an original ;)

I've also been getting grief from a few of the guys on the support group - I know they're right and it's just because they care but.. I do wish I'd never mentioned the low blood pressure thing, some of the comments were a little scary.

I've been getting dizzy spells and faint nausea quite regularly for the last few weeks, I've also been having to watch my breathing because it's very shallow, if i'm not thinking about it I don't breathe deeply - it's not asthma it's just as though I've forgotten how I'm supposed to breath.

I've also been getting sharp twinges in my chest. I am going to go to the doctors, I have an appointment booked - it's just not until the 6th november. I'm fine with that but the guys in the support group keep telling me to demand an earlier appointment.

It may be daft but I don't want to put anyone out. This new doctors is not one I can easily get to - I need to be taken there. The appointment on the 6th is for both my man and me, since he has to go anyway it's not putting him out - that and since the nurse is doing all the prelim checks then the doc will be able to see for himself what my blood pressure etc is like. I don't see the point in going before he has some data on me - it'll take a good couple of months for him to get hold of my records.

Meh, I'll be fine. I just need to take things a little easier is all.

Coping with college.

2007-10-07T15:35:00.001+01:00

It's been three weeks now and I'm just about handling things.

I come out of classes feeling as though my head is about to explode and I'm shattered when I get home, but I'm not crashing in the day and my communication skills are improving by leaps and bounds - it's only towards the end of the day I start stumbling so hopefully after a month or so I'll have built myself up to the point where I can get through an entire day without a single stumble. At least I have a day off after each lecture day so I can rest up.

The last week or so have been worrying though, I've had a faint nausea and slight dizziness come on every other day, my appetite is not what it was I get slight 'tension like' headaches and I'm dehydrating a lot quicker than usual.
I need to sort out a doctor asap!

Fingers crossed it's just a slight bug and that I'll get over it swiftly,but it's likely related to low blood pressure - the NHS survey nurse said I had incredibly low blood pressure, I just haven't been to the doctors since for a check up - methinks it's time to.

Not in Manchester anymore..

2007-09-22T15:28:00.001+01:00

That's right, after tomorrow I'll not be living in Swinton anymore, I'll be all set up in Watford.

I've finally got my course sorted, while it's full time most of that time will be spent working from home so it should be fairly easy to pace myself. Induction week was a bit of a nightmare, i was absolutely shattered - especially since it seemed one thing after another was going wrong and the possibility i may be turfed off the course before I'd even started was always present.
still it's all done now, even after spending an hour beside a broken down car on the M6 failed to stop me, a phonecall to a friend has us being picked up and towed to safety before being driven to make my LEA appointment to sort out course fees.

It's been a busy couple of weeks all told. Roll on Monday and the start of my new life!

m'shattered!

2007-09-07T13:45:00.000+01:00

Proof positive that going to bed before or around midnight is far better for me than at any time after.

Yesterday was mainly spent in bed, today has been pretty much the same.. I'm just tired and a little dizzy/ light headed, I'm eating watermelon and attempting to make my head work but this post is as good as it gets methinks.
I can't focus properly on the screen and I can't take in anything i've been trying to read.
i'm not going back to bed though, i refuse to give in today. instead, I shall start packing up my books ready to take 'em into storage - we're moving next week and things have been left a little late - which is why i'm now stressed and worried.
hence cfs nastiness.

Hacking up a lung

2007-09-03T10:48:00.000+01:00

I've been 'ill' for the last 3-4 days, for 2 of those days I was silent - not through choice of course, I just couldn't speak, literally.

It's funny though, an email from Bill in the support group had me thinking. Prior to getting CFS/ ME I was always coming down with a cold or a throat infection, I blamed it on working at the university, there was always a student dying of flu so my chances of catching something were huge.
Now though, instead of catching a cold every few weeks I get maybe 2 a year, and they don't last for weeks on end, usually it's a matter of a week tops (so here's hoping this one is no different eh?!) Bill said he's the same..

I could go into my usual paranoid mode, I actually joked that maybe the reason we all have CFS is due to secret government testing - they were searching for the cure for the common cold and instead created us lot. Bastards.

Nah, I think the more logical explanation for the downturn in colds and flu amongst the CFS community is the lack of human contact. Most of us rarely interact with other people face to face these days, most of our socialising is done online, this means we are less likely to pick up the bugs preying on the general population - though the people who visit the hospital and the doctors surgery regularly are buggered..

Anyhow, the other thing to come out of the support group emails is the realisation that I need to rip apart my CFS website and update a few bits, add a few more bits and generally re-write most of what's up there, the information is still valid but i'm not happy with the wordyness of it.
The whole point of the site was to help other potential sufferers understand the thing and I've been looking at it with a jaundiced eye of late and know that, were I to be reading it on a semi bad day I'd just zone out - there's too much to take in and it's all depressing.

Yes, the bad news is there's no cure and there's no real treatment BUT I could at least write about how that's not the end of the world.
Anyhow, that's the task I've set for myself over the next few weeks, I'll be trawling the support site and various forums for snippets of helpful information/ tips and hints on coping and I'll be consolidating it all into one page and adding that to my site

Oh and for those of you who are interested - I've finally thrown up the interview Sean wrote up. I should probably have posted it on here since it's about M.E. and how I cope but I'd said on my other blog a while back that i'd post it over there so I did.

S'all go 'ere ya know..

2007-08-16T16:30:00.000+01:00

The whole ME/CFS thing has been very up and down of late, this means I've been doing things in fits and starts. Boom and bust is not the best way to manage this illness but sometimes you just have to go with it.

It seems that July was a washout because I spent most of it on a couch or in bed. we made up for it in the first week of August though, Stef decided that we should join some friends who were camping in Wales, it's the first time I've used my blue badge (or 'my cripple badge' as we've taken to calling it) Unbelievably it really made a difference having that.

My stamina is shot to hell so being able to park closer to the places we wanted to go was a real bonus, ok so on 2 occasions I had to go back to the car before everyone was done, but it was still a help - though not as much as not having to pay for parking - I think that's going to be worth it's weight in gold!
I hate asking Stef to take me places because of the parking charges (and because he's not a taxi service) but now that little guilt has dropped away. Yup, me likee the blue badge scheme.

We got back from our camping trip and spent the day in bed before heading out for my brothers birthday, I then spent the next 2 days pretty much a wreck.

It's not all bad news though - far from it!
I may be physically buggered of late (not in the literal sense I hasten to add) but mentally I'm doing well. I've upped my VegEPA intake to 8 a day again and that seems to be paying off because although I'm tired and I keep getting headaches I can still function, there is no brain fog, very little confusion and my memory seems to be fine - in fact if I could just lose the verbal aphasia I'd be a really happy bunny, I can live with the fatigue; it's sounding like a moron when I talk to people that really burns me up!

I've been invited to contribute to a weblog discussing the social networks and this has kept me quite happy, I've also been trying to sort out my options upon moving. We're going down to Bushey this weekend to clear out the garage/ attic etc so that we'll have somewhere to store my stuff, whilst we're there I plan to go into Watford college and try to speak to someone about this years intake.

Fingers crossed I'm not too late eh?!

Dream a little dream of ME

2007-07-22T13:54:00.001+01:00

I I had a strange dream last night, I've not been sleeping very well again because of my dreams - they're always quite realistic, more like memories than dreams which can make things a tad confusing on occasion..

Basically I dreamt I'd been blogging about CFS and through the blog had been offered a research opportunity, to have a thorough going over by a nutritionist and three different doctors (can't remember the specialties but they overlapped in some way) after establishing that i eat most of the right foods it turned out that drinking tap water was actually causing most of my problems - apparently certain bottled waters also contributed.
This then led to me going on a program researching the types of bottled water available and the actual mineral content of them - it was then narrowed down to 2 that were acceptable to me personally and if I only drank those I was basically cured.

The last portion of the dream I remember was emailing the support group to explain that I didn't in fact have ME/CFS I had been misdiagnosed. Instead I had a chemical intolerance that had built itself so high even trace amounts affected me, chlorine and a couple of other things were the main culprits of the fatigue, brain fog and various aches, I just had to rely on supplements and avoid those 'contaminants' as much as possible..

*sigh*
If only that were true eh?!
I could live without tea and coffee (decaf of course) it would be a wrench at first, a nice hot drink does wonders on a cold day - but if it meant regaining my former cognitive capabilities and not suffering this awful tiredness all the time.. Meh - no contest!

I'd also have to ensure any boiled water was water boiled from the 2 bottled sources and not from the tap, this could prove expensive as far as cooking etc goes - but I'm sure that could be worked around.. Basically I awoke with the name of this condition in my head - it was three initials; CT or CN something but the name dissolved even as I was forming the intention of googling it out of idle curiosity.

Would've been freaky to find such a condition existed. The thing is, after doing all the research and finding out what it was called, I had to go to my doctor to be tested for it - she refused on the grounds that they couldn't be sure that's what I had, I remember the agument and the disbelief that this was the way the NHS was going, her hands were tied though, it seems in my dreamworld that people were only sent for tests to confirm a known condition, because I already had a diagnosis of CFS/ME this dream doctor wouldl not send me for tests to confirm the illness I actually had - which meant I couldn't get financial help towards the plumbing changes it necessitated in my home..

Like I said, very realistic dream, quite disturbing. I guess it shows i'm still hoping after nearly 4 years to be told there's been a mistake *sigh* you'd think I'd know better by now.

Remember the pace

2007-07-18T13:25:00.000+01:00

The last 2 days have been a wash out as far as life is concerned.
It's been a busy time though so there's only myself to blame, I know what happens when I overdo it but I just didn't listen to reason this weekend.
But it was so worth it *grin*

I actually danced! I haven't had a good dance in years! my cousins wedding was brilliant - ok, the weather was pants, but the ceremony and reception made up for it, she looked stunning (I did too apparently, everyone kept saying so - so much so it felt like they were over compensating slightly.. but that's just my paranoia kicking in) and the atmosphere was just what you'd wish for; nary a fight and good times all round.

Sadly the all day event combined with the dancing and the incredibly late night wiped me out, I spent most of Monday in bed and yesterday was the same, I'm still aching to buggery and feel a tad shaky but at least I can mentally function again.

It's all proof of how well i'm doing though - just last year i'd have been out for a week after that kind of exertion, now it's only stolen 2 days from me.
Things are definitely looking up!

mini relapse time again

2007-07-14T12:33:00.000+01:00

This morning saw the return of the grunting immobile shell that is me when things are bad.
Stef had to lift me out of bed, carry me to and from the bathroom and hoist me back into bed. Little reminders like this really suck.

Still, as Stef told me when the tears started this morning, "there's no point in crying babe, you have to expect it, you have this illness for life so it'll happen occasionally. You have been doing a lot lately" He then very sweetly reminded me that he's here to look after me and that I have nothing to worry about.
My man is the best.

I've had a full body massage, particular attention to my feet since a good foot rub can sometimes bring me out of it, when that failed he just made me as comfortable as possible and told me to sleep as soundly as possible through the banging and shouting from downstairs.

I must have managed it because I only vaguely remember Stef kissing me on the forehead and asking if I wanted a drink or anything before he went out (we're going to a wedding tomorrow and there's a couple of bits to get, serves me right for leaving it to the last minute really)
Anyhow, that was at about 9am so I should be ok. Going off past experience if i'm having a REALLY bad one i'm out for the entire day, it's only been about 4 hours and I'm up, brain is functioning and I've managed to fix myself a bowl of cereal.
Just means I need to take it easy so I won't spend too much time on the pc today..

I know it's not stress this time at any rate. The medical assessment doctor must have had a different reaction to my answers than Stef and I did because I had a letter through telling me I have my benefits for at least another year. Another stress reliever came in the form of a telephone call a few days ago.

We're moving. Finally, we're escaping the neighbours from hell.
In about a months time Stef and I will be relocating to Bushey in Watford. I can't wait.

Not only will I be an hour away from my best friend (as opposed to about 5 or 6) and the same distance from various other friends around the area, I've found a course at Watford college (franchised from the university) that far surpasses anything I'd hoped to do in Manchester.
I've been trying to sort out financing this week, all that running around is probably what contributed to todays little hiccup, but fingers crossed I'll be on that course come september.

If I'm not I'll be contacting the DEA in Bushey and trying to get some permitted work and applying to do my maths GCSE again (or whatever equivalent is offered on govt. programs alongside permitted work) I'll just try again next year for the course I want.

Either way, the future is looking bright, I have goals, I'll be surrounded by friends and I'm not letting a little thing like a lifelong chronic illness hold me back!
Now I'm going to sit by the window and listen to the massive fight going on downstairs - I can laugh instead of despair at my surroundings now an end is in sight *grin* Shame I have no popcorn to hand really ;0)

I'm cured!

2007-07-05T00:56:00.000+01:00

Well.. If you discount the aches and the tiredness and the easily distracted/don't listen to people/ can't carry a conversation thing.

I'm expecting to be told that I'm no longer eligible for incapacity benefit very shortly following the medical assessment I had yesterday.
I had a very nice doctor this time, he didn't make me feel defensive there was no looking down his nose or air of disgusted superiority. He had on a very nice tie though and I kept being distracted from the questions he was posing through admiration of it.

I think I am ready for work though I would much rather embark upon a course of re-training in web design as it would benefit me more in the long run. I guess I will have to see whether that option is available to me if (as I suspect) I'm soon to be on JSA as opposed to incapacity benefit.

After reviewing the answers I gave the assessing practitioner both Stef and I came to the conclusion that really it must be fear stopping me from working, it's a confidence thing .
I may be tired, I may not sleep well and I may be in pain all the time But.. I am able to function, not as well as I once did admittedly, but well enough to take on a course of study - which in turn means I'm well enough to hold down a job.. I think.

This being the case I have renewed my efforts to reestablish contact with Ms Brady of the DSS to see whether I can in fact opt for retraining.
I've found a course at mancat that looks like a good starting place - I've also come to the sad realisation that I'll have to re-do my maths G.C.S.E. There's no getting around it, an 'E' grade just won't cut it so these are my first 2 baby steps.
From there I'll need to look into finding a course to further my interest, probably some computer science degree thing but most of the ones I've looked at have a LOT of algebra modules (good job that was my fave part of the maths curriculum at school huh?!) which is what made me concede the need to upgrade my G.C.S.E. level (well that and an a-c grade is a mandatory requirement to get on the course)

I know.. Why computer science if I only want to be a web designer? Basically, long term I want to work from home, for this goal freelance web design would be ideal.
Realistically I know that is not something I could start up straight away, I'll need to find a company to work for and there is more demand for people knowledgeable about database maintenance than there are for freelance web designers.

My goals are:

2007-2008 Maths GCSE at grade c or above
2007-2008 Learn mysql and php
computer science degree - preferably one with a work placement year.
job within the I.T industry
network network network
work from home as a freelance web designer.

I'm not putting dates on anything beyond those first 2 goals because there are financial factors to take into account and they are the only ones I know for definite are achievable (that and anything can happen between now and 2008)

I'm at a point where I know I can work part time possibly full time but I'm still wary of doing too much in case of a relapse. So.. I have the choice of getting a part time monkey brain job that barely covers the bills and will end up going nowhere or staying skint a few years longer and re-training into something more like a career.

I just hope I have the option to pursue my first choice, I've done enough monkey brain low paid jobs to last a life time, that's what probably put me in this situation in the first place - this time around I want a different, more fulfilling life.

Fingers crossed eh?!

Up in the air

2007-06-24T13:31:00.000+01:00

My driving lessons are on hold (again) and I've still to hear anything from the job centre. I missed my medical assessment because I was having a crash day and basically.. I just don't know what to do with myself.

We're at the in-laws this weekend, Stef's helping tile the kitchen floor and I needed to get away from the flat. He's suggested we speak to them about moving in here. On the one hand that would be brilliant, I'd be closer to my best mate and all the online friends I've made on the karaoke forums and twitter, I wouldn't be living above a self centred wanker and I'd have more motivation to get up and push myself to do things. On the other hand, I'm 31 - do I really want to be moving into the house of my partners parents?

It's all moot at present anyhow since the subject has yet to be broached, but if we are going to move to the south, I need to know soon so I can start sorting out things like benefits/ college/ dr etc etc.

I have a new medical assessment next Wednesday so I'll pace myself and ensure I don't have another bed day when it comes around, I don't mind being cacky and mobile but the bed days suck.

Unwell

2007-06-13T16:21:00.000+01:00

It's a song by Matchbox 20 and I love it. I liked it even before I came down with the delightful illness I have now, it was the highlight of my nights at the hard rock casino when it came on - I'd suddenly have a lighter step as I continued with my duties singing along to the video.

These days it holds a lot more meaning for me, just read the lyrics and I think you may understand why:

All day staring at the ceiling
Making friends with shadows on my wall
All night hearing voices telling me
That I should get some sleep
Because tomorrow might be good for something

Hold on
Feeling like I'm headed for a breakdown
And I don't know why

[Chorus]

But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be...me

I'm talking to myself in public
Dodging glances on the train
And I know, I know they've all been talking about me
I can hear them whisper
And it makes me think there must be something wrong with me
Out of all the hours thinking
Somehow I've lost my mind

[Chorus]

But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be

I've been talking in my sleep
Pretty soon they'll come to get me
Yeah, they're taking me away

[Chorus]

But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be

Yeah, how I used to be
How I used to be
Well, I'm just a little unwell
How I used to be
How I used to be
I'm just a little unwell

Which is why I'm putting an mp3 of myself singing the karaoke version

right here.

I wonder just how many people with 'hidden disabilities' can relate to this song? Too many I fear.

Shitting myself

2007-06-12T12:54:00.001+01:00

..Not literally of course, but in the stomach clenching panic sense I am.

I just had a call from a lady with a very broad Irish accent organising a medical assessment for me. This one is to do with my claim for incapacity benefit. now, I knwo I want to get back to work, but I don't want to get forced back into full time work straight away because I knwo that will just lead to a full on relapse, I'm not prepared to deal with that again, it's taken me years to get to the stage I am now, I refuse to start from scratch and have to be carried to the toilet and forced to feed.

Yup, I'm cacking it. OK, so I know the criteria is slightly different for Incapacity benefit than it is for DLA but logic does not stop the stomach clenching, throat tightening 'oh shit' sensation that has practically paralysed me since I got off the phone.

I'm subsisting financially as it is - and that's with Stef contributing towards bills and things, if i lose this.. I know, I need to think positive and keep my spirits up or else i'll end up back in bed and lose all the ground I've gained this year, but man! I wish I could react better to stress than this.

Save me from the brain leech

2007-06-09T13:45:00.000+01:00

I feel totally drained. I mean totally.
The only reason I'm even writing this is because I feel I need to force myself to do something other than crawl back into bed - I can't even get up the urge to do any singing.
I woke up yesterday feeling as though a layer of fog had been peeled away - it's the brightest I'd felt in weeks! Sadly an intensely emotional argument in the afternoon put paid to that. I still have a headache from all that crying and I'm back to feeling totally wiped out again.

I know there's things about the flat that need doing, I know there's things on my pc that need sorting out - I also know I should go and have a shower and get dressed, I just can't bring myself to do any of it.
I'm just so tired! Emotionally, mentally and physically knackered. All I want to do is lie down (despite knowing I can't sleep) just bury my head under the covers and hope the world goes away.
I'm not 'depressed' as such, I'm just past caring, everything is 'too much hassle' 'why bother' 'who cares' 'do it another day'.
I'm kinda numb.

It's not because of the argument - that was resolved quite quickly, though it was incredibly upsetting at the time. I'm just 'meh' and trying hard not to be - hence this digital blathering.

I'm thinking that maybe the mere act of writing all this out will kickstart something in me and I will hit the shower, I will do the washing up, I will sort out my clothes..

Except I just really can't be arsed.
I hurt everywhere and on top of that, even though it's a week early I'm feeling the onset of period pains and as mentioned before, I'm just too tired to care.
I'm hungry, but I just can't face making anything and I've nothing 'snack-y' in (except chocolate and I don't want to eat chocolate) I'm thirsty but I don't want tap water because the chlorine smell knocks me sick and I've run out of bottled water and juice.

gah! it's hopeless, I've just stared at the screen for the past 5 minutes while my mind blanked out. Today is another lost day, I should just face it as such and crawl back into my pit

Mood swings and driving

2007-06-04T16:45:00.000+01:00

I was on a bit of a downer this morning when I posted this little whine on my main blog, I've since had my driving lesson and it went pretty well, considering I'm in a new car that has some of the controls in different places and it's been a year since my last lot of lessons - I'm pretty chuffed with how well I've retained the knowledge considering the mental difficulties I have these days. He's just going through the checklist of things they'll look for on my test since he's confident I can actually drive safely.
That nugget of info perked me up no end, it's nice to have confirmation you CAN do something when most of the time you are all to aware of the things you can't do.

I think my ear infection is back so I'm going to have to head to the doctors again, pain in the arse it is, but it's cheaper than going to buy the medication, that's the one bonus of a longterm sickness - no prescription charges!

I'm still sore, I'm still knackerd but at least I'm not crying or wanting to murder anyone at the moment, which makes a pleasant change..

Whoops..

2007-05-11T10:16:00.000+01:00

I never made the job appointment, I spent the bank holiday visiting my family in Daventry and basically overdid it.
I've spent Tuesday to yesterday evening recovering (ie in bed and on the couch) and can't even call to reschedule until monday - assuming she'll let me since I didn't call to let her know I wasn't going in (bit hard to do when you can't get to a phone or form a proper sentance)
Meh, we'll see, hopefully it'll be ok once I explain what happened, in the meantime I need to get back on schedule and PACE!

I am starting up my driving lessons again next week though. I'm hoping dad is going to give me some birthday money when I see him on saturday so I can add to my savings and make a block booking,
Apparantly this guy Kay used gives you a taster lesson for free to assess you and then takes a stab at how many you need, she passed first time with him so fingers crossed I can too - she's a mental driver so I can't see why I wouldn't..

tired of waiting..

2007-04-30T14:54:00.001+01:00

I went to see Ms Brady about the posibility of re-training or getting a job, sadly the systems were down (surprise) so there was not really a lot she could say about what they could offer me.
On the plus side she was very positive about the fact that I have several options, I just have to wait until my next appointment on May 8th to look at the specifics of those options as without a working system she could not access my file or any of the relevant information - so much for technology eh?!

She had me email a copy of my cv (updated of course) and a list of the types of courses I've been looking at with regards re-training, not sure if they got through to be honest since I've had no response, i'll just make sure I take the information with me in hard copy form when I go see her (and also on my usb memory stick in txt format - just in case..)

That's one thing dealing with the benefits agency does for you - it certainly makes you think of back up systems for everything you do, if you have a project then just immediately assume you're dealing with people who are really incompetant working on a system prone to crashing. You'll soon come across as uber organised!

Meh, roll on hearing some good news, I'm lookign forward to taking control of my life again.

Back to work

2007-04-21T11:51:00.000+01:00

I'm going to see sue Brady at Baskerville house on Monday.
I'm nervous.

I just don't know what to expect at all. I've talked it through with Stef and he thinks it would help more in the long run if I try and get them to help me re-train in web design. I just don't know if they'll do that.
I'm also a little afraid that when I explain my problems she'll say there's not really anything they can offer me, I've taken this step, I really don't want to be shot down in flames at the first meeting.

I'm also afraid of having a relapse, I don't handle stress at all. I keep flashing back to some of my old jobs and the tightening in my chest makes me feel ill as I think of all the office politics and thoughtless managers I've had to deal with in the past.

Then I tell myself to stop being stupid, I won't be working in sales or customer service for those exact reasons, if they try to push me in those directions because of my experience i'll just have to take a stand and say NO!
These people are supposed to be here to help, there are several lasses in the support group who have used them and can't sing their praises enough. It will be ok, the worst that can happen is they say that in their opinion I'm not ready for work just yet and that will leave me no worse off than I am now.

I just really don't want to hear that.
Best case scenario for me is that they help me find a course in IT/ web design somewhere and offer help in the way of equipment and travel costs, that would help sort me out in the long term, short term; find me a job that I can either do from home or that doesn't involve me having to deal with too many people face to face or travel too far.

I just wish monday was here so I don't have this uncertainty to deal with, I want to start sorting out my future, either by starting to earn money to save towards it or by training so that i can better myself. There's nothing worse than stagnating!

NHS blog doctor got me thinking

2007-04-17T21:31:00.000+01:00

I was on the comment trail and stumbled across a 'the NHS blog Doctor' after reading a few of the posts on my landing page I decided (out of curiosity) to do a search on cfs articles within the blog itself

I've been reading and reading and finally started to comment only to realise my comment was becoming a full blown post in its own right, rather than erase everything I decided to copy and paste it in here because this is MY place for MY thoughts on CFS and if I'm going to take up a lot of space, it's far more polite to do it here instead of eating up someone else's webspace..
Anyhow, a few of the comments to his articles were involved with classifications/ names and the like to them I write:

I had an initial diagnosis of PVFS about 3-4 years ago,

Now I'm classed as either CFS or ME depending on which medical person you're talking to, I've no idea when the diagnosis changed but when talking to someone I tend to use CFS as you can at least tell people what the acronym stands for - M.E. has 2 different names according to my research for the site I built about the subject (which needs updating desperately) both of which seem unpronouncable at the best of times - never mind when you're having trouble verbalising a sentance.

The things is, I really don't care what it's called but I need a name to write on the 1001 forms you're forced to fill out to keep a roof over your head when you can't work a steady job. Every time I go to see my doctor I'm praying he says "ahh.. Miss Stringer, sorry about the last few years, you were misdiagnosed, here - take these shots/ pills and you'll be fine"

I'd be too happy about being able to go back to work and being able to look at the prospect of having children without the worries of a relapse to care about a little thing like misdiagnosis.

On the aforementioned blog there is a lot of talk about Lyme disease but from just reading that wikipedia link it seems impossible to differentiate between it and CFS is it that you can test for Lyme but not CFS, or is there still no way of telling apart from a rash?
To be honest I'm almost afraid to look into it because I hate feeling like a hypochindriac, I especially hate it when my boyfriend - the person who has been the most supportive person imaginable throughout this whole thing, laughs at me and says I'm reading into things and then convincing myself I could have it - I don't, at least I tell myself I don't do that.
But do I?
If I'm completely honest with myself, I do - a little.
For example - my elbows, the pins and needles in my hands, the pain that travels up my arms into my shoulders and neck that cause the headaches.. I thought I'd found a cause for them but when I mentioned it to him, he laughed - so I didn't go to my doctor.. I should, but I don't want to have the hypochondriac label even more firmly attatched to me than it already is over the CFS one.
Is it because I'm so desperate to not have CFS/ME that I'll look at things which are treatable and mentally slot my symptoms into that shell instead of the CFS one? Or is it the more reasonable desire to know WHATS WRONG? To want to find a root cause for the problems before me so that I can understand them and find a solution.

I've been alternately researching symptoms and burying my head in the sand for so long that I no longer know just what drives me to care anymore.

(Now this is the point where every other sufferer I know will probably clamour to have me burnt at the stake..)

I do believe there is a psychological aspect to this illness and that is why CBT does help some patients and not others.
Some patients have had this for decades and have received little to no help from a recognised medical professional, they have been ridiculed by friends and family and termed a hypochondriac by one and all - these people are so depressed by the effects of the illness that it has come to define them, they respond to almost anything put forward in a kneejerk defensive manner - the 'ill try it but it wont help' attitude because they have tried practically everything available already.
CBT will only help someone who is truly open to accepting the illness and finding ways of managing to live around it - that would be the people 'new' to the illness, those still unsure just what it is they have and what the hell does it all mean. The people I mentioned before have had the illness for so long that they're stuck in the 'fighting it' stage, they will never truly accept it because how can you accept something about yourself that nobody else will?

I'm not sure if that made any sense, I guess what I'm trying to say is that CBT is a way for patients to define just what cfs means to them and then in turn helping that patient come to terms with all that definition means, people who have suffered with it for a long time already know what it means to them and therefore feel they are being patronised to and cannot take on the second part of the therapy - the part where they can come to terms with it, they already feel that they have - In other words CBT is a waste of time and resources for these people - all they really want is for people to take them seriously, becoming well is now a secondary wish because it seems a futile one.

Until there's a cure there's no point doing more than learning to manage it, in my opinion to do otherwise just stresses you out which in turn exacerbates all of your symptoms and so on and so forth the vicious circle runs ever on - the problem is, how best to manage it?

Which is why I worry about hypochondria and still occasionally look for alternative explanations for my condition on the sly.

Now I'm off to read Marys blog because from her comments over at NHS Doc she seems to be right on my wavelength..

My elbows hurt.

2007-04-14T11:12:00.000+01:00

Like, a lot.

they have been for a while - even before the fatigue thing started so that makes it several years, funny how I forgot they used to hurt before, blogs are great memory nudgers I guess. But of all the joit aches I have evry day, the elbows hurt the most.

Even with the 'sleepy pills' I couldn't sleep last night, the pain was just that bad. I dozed on and off but didn't really hit sleep, the one time I got comfy Stef decided he'd roll over and cuddle me and I couldn't find the comfy spot again..
I wouldn't mind but when something hurts that much it just makes all the other aches feel worse, now my wrists and my shoulders, right up to my neck, all hurt - I know, sitting hunched over a keyboard won't help, but I have to distract myself somehow.

I'm groggy and irritable from the lack of sleep and the pain but what can you do?
My elbows feel like they're on fire, it's as though the muscle or something is in the wrong place and it's stratched and fraying on both arms.. I can't straighten my arms when I'm in bed, they're always bent - I'm the most comfortable when they're raised above my head but I can't sleep that way when Stefs next to me because I've got a crappy mattress and as soon as he lies down I roll into him because of the weight difference.

I'm just sore, depressed and fed up.

Phenergan and ginger

2007-04-03T11:31:00.000+01:00

After the happenings of the other night (you may wish to take a moment to check my other blog for details) I've had trouble sleeping.

I've been doing reasonably well sticking to the sleep schedule barring a couple of late nights and bad days, but since Saturday I've been lying awake with the adrenalin kicking in every single time a security light goes on or I hear the gate slam (which is a lot seeing as how they kicked in the gate as well so there's not catch to stop it)

Anyway, since I don't want to balls up the progress I've been making I went to the doctor for something to help me sleep.
I told him the situation, he was most sympathetic - actually told me to move as soon as possible, he took one look at my address, read out the street name and said he wasn't at all surprised, he's got a couple of patients along here that similar things have happened to, all older than me but classed as 'easy targets'.

He did not wish to give me sleeping tablets because, not only would he only be able to give me a weeks supply, they are highly addictive. Instead he's prescribed a course of antihistamines.
Apparantly they do the job just as well, as a bonus they should help with the dust allergy I seem to have and I can have a months worth.

Now all I have to do is wait for the council to come fit a new front door.

On the cold front, it seems the ginger method is working, I only had the sniffles for a couple of days, I do have a tickly cough but that could be because of all the dust in here, it's ridiculous how much you get in this flat.
Here's hoping we find somewhere decent to move before the end of the month - I could well do without all this!

Work or death!

2007-03-27T10:51:00.000+01:00

Well.. Maybe not anything quite so dramatic, but i've decided i'm sick of being sick and i'm sick of sitting on my arse and being skint!

I've spoken to the jobcentreplus people and they're arranging for an adviser to call me, in the hopes I can sort out either a training course or even (please god!) a job.

I've been sitting around waiting to be well enough to work and that hasn't happened, so instead i'm being pro-active, I'm going to try and find a job that works around me instead of it being the other way around.
Who knows - if i'm lucky they may be able to send me on a web-design course, or even offer me some in-house training somewhere so I can get paid while I learn.. Anything has to be better than the way i'm doing things now - and if the worst happens and I end up having a relapse..? Tough, I've not lost anything and at least I'll have tried.

This is about self-respect and making my life better, ok, things are not that bad - I do like having the time to do what I like, but at the same time, I want to be paying my way and not worrying about money all the time - for that to be resolved I need a job.

Fingers crossed this works out for me!

Pacing

2007-03-16T13:50:00.000Z

I've made the resolution to try and pace myself well - this is proving a difficult task. I have a timetable that i'm supposed to stick to, but just 4 days in and I slipped - despite knowing full well I had an evening out planned with friends, I spent a good hour playing on the wii (fishing, bowling and golf) I also went for a walk around the shops because I wanted out of the house for a bit..
Neither of which are on the timetable - and I only rested for about 30 minutes in the evening.

Which is why today I had the full on 'cataplexy' thing going on, I was awake(ish) I was certainly aware of things in my immediate vicinity - I just couldn't move a muscle, everything was fused almost solidly into whatever position I'd fallen whilst asleep - so at least I was comfortable eh?!
Finally managed to get up around 1.30pm, had a small bite to eat and my pills then checked my mail - now I'm here.

Why am I here?
Well, one of my emails included this link and having gone through the site I wanted to work something through for myself.

This paragraph really struck a chord - it's exactly what I've tried to explain to others but couldn't:

if you have ME/CFS you cannot allow yourself to fully experience all your symptoms all the time, or you would never get through the day. Out of necessity we detatch ourselves from our symptoms to some extent because that's the only way to survive ME/CFS

The thing that really struck me though was the section on reverse therapy. I've heard of the process before but it's another one of those treatments that has made something inside me rebel at the thought of trying it - an instinctive rejection of something that will not help and will only cost me money I don't have.
There's a lot of those kind of therapies around.

Having read about Matthews experiences I can honestly say I'm still not sold on the idea myself - but there are some parts of it that made me go "hmm.. actually, there may be something in that"

For me it was this portion that struck a nerve:

Getting your body to trust you again

For most people of course ME/CFS is post viral. But to the body/mind a threat is a threat - physical injury, a virus, stressful life events etc, they are all the same. After these experiences the body goes into a heightened state of alert but we carry on because we don't know what else to do. The sense of something being wrong gets stored in the body tissue and a concious realisation that the problem has been solved is not likely to release it. For example, during my illness the backs of my legs continued to be stiff and despite years of Yoga practice, any exercise to stretch them just resulted in the legs stiffening up again, and I experienced an increase in tiredness.

After the second session I realised my concious mind knows I have no intentention of returning to the house where I was assaulted, but my body did not! So I did a Yoga stretch pulling on the backs of my legs, then thought to myself "I will never again live in the house where I was assaulted". I waited a few seconds, and lo and behold, the muscles just let go in a way they hadn't done for 3 years! I then promised myself, outloud, to "never again run on empty", as I had when working whilst being exhausted by the head injury. And I got the same result!

It made me think of my responses to my mother - how the second I made the decision to never have her as a part of my life again, most of my symptoms practically vanished, how if I dream about her or one of the family bring up the subject I start having problems again. I know that's a very simplistic way of looking at things - but it's also an undeniable fact that I'm a healthier, happier person if she is not in my thoughts, never mind my life.

The problem is, how can I make it clear to myself that she is going to remain a stranger? Short of cutting off from the rest of my family completely I can't guarentee it so it's not as though I can make that kind of promise to myself and keep it, perhaps this is why I'm so eager to move as far away from Manchester as possible? Could this be the subconcious reason I'm so happy when I'm looking for a new home and so depressed when it falls through?
But then of course, I could just be grasping at straws again to explain my symptoms and she's conveniently easy to blame

Anyhow, this site is definitely worth a look, if only for the eye exercises, the miso soup recipe and the yoga demonstration.

Moving on up

2007-03-11T19:06:00.000Z

..and moving on out.

That's right, we've decided that we're right royally sick of the muppet downstairs - even though we can mainly tune him out these days. Instead we're looking at moving home, possibly Knutsford way - perhaps even as far as Sandbach.
I'm no longer bothered about getting a decent doctor so it doesn't matter where we move - lets face it, I have a fantastic doc now but he can't do anything for me.

I had a long hard look at myself when the DLA decision came through denying me any money and I've come to the conclusion it is probably a justified decision.
Before I went into hospital for the perianal abcess experience back in.. um.. October? November..? Meh! Whenever it was. Anyhow, prior to that I was doing really well, but I was pacing properly and making a concerted effort to stick to a healthy diet and a decent schedule, that lapsed pretty much as soon as my backside broke out and I've not really tried properly to bring it back - this is why I'm so crap at present, I have no one to blame but myself.

The worst part is I know better! I wrote an entire page on the benefits of pacing for my website! I know eating and drinking certain things help more than others. I know beyond a shadow of a doubt that diet has probably the biggest impact on my ability to manage this illness than anything else, yet I've been lazy, I've allowed myself to sink further backwards because it's easier to let Stef do everything, if he doesn't feed me, I don't eat - even when I'm at a suitable level of energy to make something, If he doesn't tell me I forget to take my pills, I don't go to bed or get up at set times..

I've allowed myself to become a leech. That's about to change, I had a look at my life and what I'm becoming and I don't like it one little bit.

Hence the chat we had earlier.

I've made a timetable for myself as I did the last time things were going well. the only things written in blood (or coloured in red) are meal times and waking/ sleeping times. I have pencilled in a cleaning rota interspersed with rest periods and free time, but these are subject to change depending on the demands of the week. I've also gone a step further and done a little nutritional research.

Since Stef want's to lose weight and has asked me to help him with this I've devised a shopping list and provisional meal plan using the Glyceamic index sadly this means I have to give up a lot of my comfort foods - the worst being mashed potato (my absolute favourite) in favour of things like lentils, it's not as bad as it sounds though, Stef is an amazing cook so he even manages to make lentils taste delicious - but it's not the same as a proper plate of mash is it?

The upshot of all this is if when I've followed this pattern for about a month I should be approching my former energy levels - maybe even sooner as long as no other colds/ ear infections etc sneak up on me which means I'll be able to recommence driving lessons, I need to get my licence before my theory runs out so the sooner the better - this also means once I've passed my test i can start looking for work, it's travelling that wrecks me more than anything else - even when i'm doing well and pacing properly, my own car will halve all journey times and ease that particular piece of working life no end.

See, I'm back to being a positive bunny again - it's amazing what a kick to the head will do for you sometimes..

a.r.s.e.

2007-02-25T18:07:00.000Z

I've been pretty bolloxed since my trip to the bank the other day - whats worse is how that particular trip went.
Ever since I came down with this illness it's been a case of one extreme or the other - I can either walk or I can't, I can speak and be understood - or I can't.

Now though, it's horrible. I felt up for the walk so I set out as normal - within about 50 yards I was forcing myself to put one foot in front of the other, my pace was a crawl and I was actually chanting silently to myself to keep going, a 15 minute walk took me over an hour - and getting back was a major trial. I made the mistake of pushing myself to get some cleaning stuff from the precinct (and nearly died of shock when I found the savers had changed to a superdrug, how long has it been since I last went shopping?!)

ANyhow, by the time I got home i'd been gone 2 and a half hours, on a normal day it would take 30minutes tops to do my errend and get home, I made it through the front door and sat down crying at the thought of pulling myself up the stairs for a sit down.
I finally made it upstairs and basically crashed until Stef came in. It was a rotten day all told.

The next day ended up being even worse. I had a shower and as I went to get out my left leg gave way and I fell quite painfully - i managed to hit the sink, radiator and the side of the bath on my way to the floor, Stef was unable to get in to help me because with me on the floor he couldn't open the door - I really don't want to have to go back to showering with the door open 'just in case', it's been ages since this has happened, I'm tired ALL the time, my head is a foggy mess, i cant retain any knowledge and its no good trying to give me instructions to follow - all I hear is "blah then you blah blah blah before blah blah"

*sigh* at least I can still bead.

weyhey!

2007-02-20T13:48:00.000Z

So, I slept in until almost 1pm - despite being in bed by 12.30 last night (minor achievement) ok so I wasn't in a deep sleep for most of that time, but I woke up not feeling as though I'd been used as a football in the night by a team of mules - which makes an incredibly pleasant change!

It's amazing how much brighter the day feels when you feel a lessoning of pain isn't it? it's miserable as sin outside yet I'm feeling happy and relaxed, I'm even planning a walk down to the bank later so I can pay some bills (just waiting on my hair to dry, i've been a skank for days but today I felt up to full on cleansing, nothing beats feeling clean, warm and 'well')

Right, breakfast, pills and on with the day. *grin* my life rocks.

Bad day

2007-02-19T16:31:00.000Z

Meh, should've known.

Woke up around 10, got up about 11, checked 2 emails and ended up back in bed - too dizzy to not be.

By 2pm was dying for food but couldn't get anything, visons of my stocked fridge and cupboard were taunting me and there was nothing i could do about it.
Stef cooked me something around 4ish and i'm back on the pc trying to wake up and show willing.
reckon i'll go back to bed shortly, i ache everywhere

pathetic, weak, shaky, dizzy achey mess.
m.e. sux ass!

Today has been a GOOD day.

2007-02-18T23:35:00.000Z

Hopefully the first of many.

I woke up and managed to get out of bed without having to push myself (which is always a good sign *grin*) I even put in a load of washing and remembered to take my pills (go me!) Sadly I took it a step too far and went shopping.

Bear in mind it's been weeks since I've been in any fit state to go far, let alone carry things. Anyhow, I managed to get to Aldi, got a trolley to lean on even though I wasn't buying much - this proved to be a fatal error because instead of using my Ruksac as a basket like I normally do in there (best way of making sure you don't get too much) I ended up with 2 extra carrier bags, ok so the bags only had bread and pasta in them, it was still more than i've lifted in quite some time, I was absolutely shattered when I got home.
Sat at the bottom of the stairs for a few minutes then forced myself up to get the stuff unpacked before I crashed.

Wasn't out of it for long though *grin* and the rest meant despite an initial lack of enthusiasm, about an hour or so after Stef had gone for drinks with a mutual friend, I went out to meet up with them, It has been a very pleasent evening all told - it was quite pleasent being greeted by name by the landlady even though it's a good 6 months at least since I was last in there, she asked how i'd been/ where i'd been etc and was generally made to feel as though I've never been away *sigh* I miss going out sometimes, today has been ace!

Unfortunately, i'm aching all over and my throat has been killing me all day - but that aside, I think I may actually get some real sleep tonight, hope so - this flat needs a really thorough cleaning and I've earmarked this week to do it!

medical assessment hell

2007-02-15T13:22:00.000Z

See here for the full story.

I can't believe how down the whole thing has made me, I'm sure I didn't feel this bad last time I had one. Mind you last time I went stef was practically carrying me and I struggled to do the physical things so I doubt they were as sceptical about my claims as the guy was this time.

It just sucks major donkey bollocks.

And.. Calm.

2007-02-09T19:32:00.000Z

The lovely Kevin from welfare rights was around again today, he's filled in my incapacity forms and helped ease my mind somewhat about the dla medical assessment I have on Tuesday at Albert bridge house.
I've been worried about this because the last time I had a medical assessment they took more money off me - hence my current ridiculously in debt financial state. The thing is - if I were trying it on i'd just shrug my shoulders and get a job, sadly I'm not and I cant so this is almost literally life or death stuff for me (only 'almost' because I'm sure stef wouldn't see me homeless or starving)

You see I always downplay how this affects me mentally because I don't class myself as depressed, yes it gets me down - but the way they use the term 'depressed' makes me think i'm going to have pills forced upon me and I don't want that. i'm not suicidal i'm just frustrated and worried and quite frankly fed up of being left to rot by the medical system.

Here's what I mean by that last remark:
Whilst we were going over my paperwork today we found the last letter I recieved from my 'specialist' at hope hospital, it's dated 24/07/2006
In it Dr Haeney ends the letter by saying:

I will see her, probably, for a final review in 2-3 months time.

It was that 'probably' that tickled Kevin.

It's now 7 months since our last meeting and I've heard nothing from his office. I'm not surprised though, he said himself at our last meeting that there is nothing he can offer me, I've done the CBT and been discharged and I attempted the energy for life program at NMGH which means to all intents and purposes they've exhausted whats on offer in the way of treatment, I'm on my own.

Gotta love 'em. But that's why I haven't bothered pursueing the lack of correspondance, he's already said theres nothing he can do - why waste my tima and his with a trip in there to be told the same thing again? At least he can give his time to people he can help if i'm not sat there asking questions he has no way of answering.

Meh, no matter. I'm expecting to be called for another assessment for my incapacity benefit as soon as they receive my forms so I guess I can just suck it up and pray I get a doc who understands this illness and will judge my case on its own merits instead of lumping me with the blaggers out there.

Oh.. and the ear infection has not gone, it's masquerading as a throat infection - at least thats what I guess is happening with my throat, it aches and feels swollen but for once there's no visible ulceration and as long as I stay hydrated I can swallow without too much discomfort. I will go to the docs about it, but i'll wait til after this medical assessment, you never know - they may spot something and save me a trip.

Tension headaches and vile nastines

2007-02-06T09:47:00.000Z

Last night, well, most of yesterday, was spent in a miserable heap - I was crying for no reason, my head was pounding - so much so that at some point in the afternoon it developed full blown migraine status and I spent most of the day in bed or lay on the couch.

I'm sick of aching, it used to be that i'd ache when it was hot - now i ache when it's cold, it's like my muscles fuse into place and when I move them the 'crack' is audible.
It sucks major donkey bollocks.
I'm completely back in the unrefreshed sleep camp - probably my own fault since I've not been going to bed until gone 1am, but i'm just lying there for a good hour before I doze off, then i'm skimming sleep all night, constanty waking up and dozing off unable to hit deep sleep.
and I ache. Really ache - everywhere, my back, my arms, my legs, my neck and shoulders..
I'm a 30 year old woman inhabiting he body of a 72 year old.

At least that's how it feels.

I can guess forever as to what's causing this but i'll never be right - I know stress is not helping, I'm worried about money again, i've got to fill in my incapacity benefit forms but as soon as i sit down with them i get panicky and hit meltdown and just go back to bed - i can't keep doing that because they need to be in soon.
Guess I should call welfare rights again.

The thing is, i know about all these new guidelines they have regarding ME/CFS which means that since i'm apparantly a 'moderate' case I may not be eligible for full benefits - i'm barely scraping by now, actually i'm not scraping by, i'd be buggered if it wasn't for my overdraft and that's being slowly eaten away again. I'm just stressed.
life stinks.

pissed off

2007-02-05T10:01:00.000Z

I stupidly thought I was getting things under control - again!
Why do I never learn? I'm back on the boom and bust routine because it's the only way I get to do things.

On the plus side I think the ear infection's gone - on the downside I've now got a throat infection.
The upswing I thought I was on through mucho water drinkage was obviously that high you get when your body first starts to fight off infection - I should've known, I've been in far too good of a maood the last few days - even despite not sleeping properly.

I'm back to feeling no refreshment from my sleep, needing to have a doze in the day - despite staying in bed til gone 12 most days, I ache everywhere and the wanker downstairs isn't helping matters.
He stopped playing his music around 1.30am and started up again at 5.23am, the guy must be on drugs or something!
I'm only up now because I tried to make an appointment to see my doctor - sadly the best they could do is next monday, she said to ring in tomorrow morning for an emergency one if i needed sooner - I have to get something for my throat - it hurts to swallow and i had trouble breathing last night, 1000mg of paracetamol took the edge off but I'd rather get a spray that targets the area than painfully swallow pills that don't.

is it or isn't it?

2007-02-02T00:04:00.000Z

After 3 years I still find myself looking at other illnesses and thinking 'it could be that - what if it's that and not cfs - did they test me for that? Was I misdiagnosed?'

It has to say something about this illness that I'd rather have anything else - preferably something treatable.

As it is, I've been looking into the causes of dehydration, and I can't help wondering if the normal diabetes test brings up all the different types - could I be diabetic? all my symptoms seem to be the same as that of a diabetic, could I have been misdiagnosed? please god let me have been misdiagnosed - I could get treatment then and go back to work!
Or could I have some adrenal or glandular problem - or maybe it is because of my teeth? my teeth are terrible, I'm always getting mouth ulcers.. Perhaps its a mineral deficiency..?

The list goes on and I end up feeling like a hypchondriac again, you'd think after three years I'd be resigned to my diagnosis and just getting on with things - not so, every time I go to a dr or a specialist there is a small voice in the back of my head praying to hear the words "Actually miss Stringer, you appear to have [insert virus/ illness here] I don't know how we missed it before but if you start taking these pills you'l be back to normal in no time." It's ridiculous I know, but each time that's what happens and my hopes are dashed because the consultant in question never answers my prayer.

This is an ongoing mental cycle, I start researching some symptom or treatment that has been bothering someone in the support group, I get information overload, start to feel depressed and then try not to think about the illness at all for as long as possible - at that point I usually stop going online as well because I know i'll be emailed about it and I'm avoiding even thinking about it.

That's basically how I get through my life - I just try not to think about the illness. When I do it's in an abstract way, it's not me, it's just something of interest.. Until I start thinking about me and my life and how it affects me then I get depressed and in order to stop feeling depressed I shut off from it all.. and so on.

Recently I've found I can talk about it to people - but then it seems like that's all I talk about, when I realise the direction the conversation has taken I start to try steering it away, but for some reason people then seem more interested and I get in a tizz trying to both explain what it is and what having it means - and simultaneously trying to think of something else to talk about before I reach the point the tears start - and they do, the second I stop managing to fool my brain into thinking this isn't personal I get a wave of emotion and the upset brings about embarrassing emotional outbursts.
Surely there's more to me than this?!

Ah well, I guess I should just prepare for another outburst of depression - it's time to fill in the incapacity benefit forms again - bit hard to ignore something when you have to write about it in detail in order to recieve an income eh?!

Dehydration and cfs

2007-01-23T12:50:00.000Z

After yesterdays post I left this response on the bury/ bolton support group message board :

It has made me wonder though - i thought the dehydration thing was a symptom.. what if it's actually a contributing factor?
I was just talking to stef about it and he says i'm actually better when i'm drinking loads - I know when I was in Italy I handled everything fine - and we walked for MILES over there! but I was drinking water practically constantly all day every day because of the heat.

I know I was amazed at how well I coped, but I did have a mini relapse when I got back - but by then I'd gone back to my normal 'drink when I notice i'm thristy' routine - which is definitely nowhere near the rda..
It's just, ever since I first got this thing I'm always thirsty - so much so it becomes a background thing that you ignore until you can't anymore - and my lips are constantly dry and flaking, i get mouth ulcers all the time and.. well i'm just dry and run down even without the cfs stuff.

and Louise swiftly responded thusly:

There could be something in what you say as Dr David Bell, chair of the CFS advisory committee in the US, says you can reverse the symptoms of ME, but it only lasts 6 weeks, by giving an ME sufferer saline infusions. Also, there is research saying people with ME have low blood volume and water and salt increase blood volume. Drinking enough water is definitely essential for people with ME considering the research that points that way.

Which then made me want to know more.
This article gives quite a thorough accounting of the ways in which dehydration could be responsible for many of the symptoms of cfs - and I have to agree with it because those symptoms lessoned when I was in Italy and drinking more than my body weight in water - I had no aches and I didn't suffer any more than the people I was with after all that walking.

Now, the website of Dr David s Bell gives an account of the saline infusions Louise mentioned, I know when I was in hospital and they had me on a drip that was simply saline, I felt 'fresher' my lips plumped out a bit and lost the dry flakiness that I always seem to have these days - my eyes also lost the 'gumminess' I always have, even when they're not dry they feel 'tacky' as though they're drying out..

Still, it's unlikely we'll be offered anything like a weekly/ daily saline infusion in the uk so it's pointless going down this road. But I'm still going to try and up my water intake (she says.. )

I've just realised i've not had a drink yet today and it's already 1.20pm I need to set up a reminder system on my phone, if I drink a pint every hour it'll be approaching my italy intake and that's one way of determining the difference.

Isn't that odd..

2007-01-22T19:01:00.000Z

The times have thoroughly redeemed themselves after most of us wrote in to them about their take on CFS.

It's kinda nice to think that perhaps we did have something to do with that article being written, you never know, maybe we did.

It's funny though, reading the part at the end of the article about a personal experience has led me to realise something.. I too have dry itchy eyes just before a bad bout, I thought it was just that dehydration was a result of the cfs kicking in badly - but I have to wonder.. Do I get a really bad time of it when I'm more dehydrated? is dehydration a cause rather than a symptom? i fely great in Italy, but I was drinking a hell of a lot more water over there than I was here and I was taking an afternoon nap every day..

Who knows? I may have to ask my specialist - assuming I ever get to see him again, I'm thinking of asking my doc if he'll refer me to the clinic all the bury/ bolton lot go to - i'm guessing he won't be able to because of cachement areas etc but it's worth a try..

And a rant

2007-01-11T13:41:00.000Z

I've already vented my spleen over here
feel free to go and have a looksee and express your disgust alongside mine.

Aaaaaaaaaand.. crash.

2007-01-10T17:37:00.000Z

Yup, today made up for whatever wakefulness I've had - I got out of bed at some stupid time this morning because I just couldn't get comfortable and gave up lying in bed tossing and turning and slept on the couch, at about 12ish Stef came in and tried to get me to move; wasn't happening.
I finally managed to get up at 3.15pm, had a shower and basically monged about since then - can't wash my hair though *sniff* it's manky as sin but I'm not allowed to get water in my ears and I've not got any cotton wool yet to plug them with - it's driving me nuts!

On the plus side - while I may be physically whacked today, I seem to be mostly there on the mental front.
Makes a nice change lately.

If only the painkillers were working *sniff*

That aside, I need to rest, I've got another band rehearsal tomorrow night that I need to be fit for - it seems we're doing our first gig on march 3rd and so they've upped the tempo on me to 2 a week (and lets face it, we need the rehearsals!)
I'm just a tad worried about how this will affect me though, after just 4 songs last night the shakes kicked in and I ended up sat on a chair for the rest of the practice session - this does not bode well for a kick ass rock show and it really doesn't bode well for the next month or so, I'll pace it of course, but it means instead of losing 2 days to resting for rehearsals I'm now losing 4 so apart from mondays that's my week sewn up (I don't like to go out at weekends if I can help it, I don't handle crowds too well) and then there's the stress of the performance itself..

I get nervous enough about going on stage when I don't have the image of a very public crash at the back of my mind - I'm thinking a few calming techniques are needed before then. That and a back up singer.

To make matters worse, they're talking about buying a new mixer for the band, i hate that I'm not contributing my share - they pay for the rehearsal space and any drinks, I get chauffered to and from the place and now they're buying more equipment. I'm such a scrounger!

And no sign of a response to my DLA claim yet.
*sigh*

I need to start selling things soon, it's my only financial recourse.

catching up

2007-01-09T09:13:00.000Z

So last night I think i maybe got an hours kip, i'm buzzing like a buzzy thing and having trouble..
doing whatever, can't find the words i need and it's pissing me off.

To pinch a paragraph from my main blog:
someone’s flicked the power switch again and i’m on full pelt, adrenaline overload - my system is buzzing like a buzzy thing and it’s not good - it means either later today or for most of tomorrow I will crash, hopefully not today as I have a doctors appointment at 4.25 and i’d like to make this one - the last one never happened because I couldn’t get out of bed.

There was newspaper snippet passed round the bury/bolton support boards on sunday and a few of us have responded in e-letter form in the vain hope someone takes notice, I won't hold my breath - but it'll be interesting to see if something is said.

I need to try and focus, can't go to the docs like this - how can I tell him what I need to if i can't figure out what it is I need to say? gah! I hate this thing sometimes.. actually I hate this thing all the time, i just try not to think about it as often as possible, that's probably why i'm on 'hyper' it stresses me out - especially with regards finances, I still haven't contacted the social about the amount their raping from me each fortnight, i just can't focus enough to communicate with someone who doesn't know me - i sound like a complete idiot on the phone, maybe i'm more sensitive about it because i used to work in a call center and i know the mindset of the operators, whatever the cause i hate to sound like a tit.

Ear infection? Here, spray this.

2007-01-05T22:58:00.000Z

I went to see Mr Willatts at the ENT clinic today, apparantly I have an eczma like substance in my ears. I've never had eczma before - what a horrible place to get it.

Anyhow, I've been given a spray to use three times daily and instructions to give my GP a copy of the prescription as I'll need to keep it up for a while *sigh* I wouldn't mind but it smells like photographic developing fluid and it's uncomfortable to say the least, I'm not supposed to get water in my ears and then this spray fills me up and leaks down my neck *shudders* and it sort of burns - not in an uncomfortable way, more like it's stimulating my inner heating system, still, as long as it gets rid eh?!.
*grin* just looked up the active ingredients in the spray - apparantly it's used for difficult ear infections especially in dogs! LOL
That's tickled me that has. Ah well, maybe in my next life I can be a cat or dog - they get better medical care than humans do!

new year, more sleep

2007-01-02T13:31:00.000Z

On the plus side I've only crashed twice over the Christmas period - on the downside both times were in public.

The first one wasn't so bad, we were in church Christmas morning and I just sat slumped on the pew with Stef holding me up before half carrying me out to the car at the end of the service.
Last night was worse.

I'm not sure what brought it on - I'm only guessing when I blame the speciality tea I was drinking. It felt like I'd had an espresso, the jumpiness, the sensation of something bubbling just under my skin (not a pleasant sensation I assure you) then I crashed totally - it's like when a pc is hit by a power surge, there's a split second of all system functions going nuts then it just shuts off - that was me.
I was the dreaded blue screen of death last night.

It didn't help we were visiting people who lived in a flat at the top of 3-4 flights of stairs, it took 2 people to carry me down them after Stef had put my shoes and coat on, another person trailing behind carrying my belongings, then being stuffed into the car only to repeat the process at the other end.

What makes it worse is that I get so frustrated at not being able to move or help myself that I start crying - then I get embarrassed at being so pitiful and can't stop crying, which makes me feel even more embarrassed.

I've had to cancel going to visit my best friend today because I'm just too wiped out, I've not seen her for months and was really looking forward to catching up and now I can't. I hate this fucking illness.

Here I go again... cue guitar

2006-12-21T23:47:00.000Z

Got up at around 11am after another night of nightmares.. Again I couldn't remember them - it's a crying shame that, it means something is obviously bugging me but I can't think what it is.

Perhaps I'm subconciously stressing about the DLA thing and my financial situation, it is the most likely candidate after all. Or perhaps it's because I'm getting broody again, I'm starting to feel as though my chances of motherhood are fast slipping away, that's the part of me that even thinks I deserve to have kids anyhow (but we wont go there now will we?) Or maybe I'm just worrying about this illness again.

Meh! either way, I'm not sleeping too well and I've given up any pretence at pacing until the holiday madness is over - i'm back on the boom and bust regime, it's not good but it's at least productive (when I'm not bust) sadly it also means my sleep cycle is buggared again - look at the time - proof positive since I should've been in bed at least an hour ago - yet I'm wide awake.

The guys and gals on the support group message boards have been keeping me entertained and mildly disgusted chatting about this
I wouldn't mind but I hate dark chocolate *sigh* why can it never be a nice bar of dairy milk eh?!

I've neglected a specific symptom round up for a while - not good since this blog is supposedly my way of tracking patterns but there ya go - my memory sucks, so here's an up to date 'as of this moment' one:

Fatigue
General acheyness
Intermittant tinnitus
Intermittant verbal dyslexia
almost constant dehydration
intermittant dizziness
sore throat
mouth ulcers
problems with bowel movements (A.G to anyone in the know *blush*)

At least this time depression isn't in there - I'm generally handling things quite well (please disregard the nightmares, I have no control over them)
Actually - I could just be having nightmares because of the idiot downstairs and his 4am Dolly parton parties (they must be parties, why else play her greatest hits at full volume and attempt to sing along at the top of your voice? I wouldn't mind but the guy really can't sing)
At least he seems to have gotten rid of the dog, it's mournful howling all day was a little much on top of his other anti social and inconsiderate behaviour!

Free money

2006-12-18T10:51:00.000Z

YEY - I got paid!

ok so it was only £13 but it's £13 I didn't have before.
Check it out:

All praise the mighty VegEPA!

2006-12-12T13:00:00.000Z

I may be in the middle of a relapse, but I'm handling it a hell of a lot better than at any time previously. I think it has a lot to do with the VegEPA supplements.

Since I started taking them my mood swings have leveled off and Stef reckons my cognitive abilities have increased - until I became ill again and fell into this mini hole I hadn't really credited the latter observation, but now I do.
This is why it's easier to bear this time around, I can still think and communicate, I'm not just a worn out vegetable.

Yes, I'm still not at the cognitive level I would class as 'normal' for me, but it's a hell of a lot better than the level I was at when I first started dealing with this 'wasting disease'. I can write a legible sentence, a paragraph doesn't take me an hour to write and I'm not constantly referring back to my well thumbed thesaurus in an attempt to explain what I mean coherently when writing a blog post.

It's good to have the use of your faculties again, even if it's not quite the range of use you may have had previously - but then we all lose a little as we get older don't we? It's the nature of things.

I still prefer communicating via email because I can take my time to figure out what it is I'm trying to say, when I talk on the phone or in person I stumble and get flustered and end up sounding like a moron - which stresses me out; I'm not an idiot, I'm just ill.

I think I know what it's like for the lip reading deaf now - for them a conversation can only take place if they can see the other persons face and if during a chat the other person looks away mid sentence, the deaf person will miss some of what they're saying and possibly lose the context of what's being said - this is how misunderstandings arise.
It's a similar thing for me, only instead of being deaf I have lapses of concentration and when that happens it's as though I've lost sight of their face and miss half of the conversation, it's not that I'm not interested or I'm not listening, it's like I 'forget' to hear them.
When I'm like this it's very tiring to talk to people because I'm having to really work at following what's going on - it also means I'm filling in the gaps myself and so the conversation I remember having sometimes bears no resemblance to the conversation other people think we're having.

It's confusing and frustrating to say the least.
I can handle being tired now, It's taken me three years to stop beating up on myself about it. The aches are back, my throat is an on off hurty thing, but I'm not letting the tears trickle down my cheek as I languish in a pit of self pity, I have my mind and can think of the future.

This is why I've decided to start trying to sell my beaded creations on eBay.
I have problems concentrating on anything for long periods of time - the only thing that absorbs me enough is web design, but since I can't always focus on a computer screen for long periods due to the headaches it engenders, having enough concentration is not really a problem there. It's a challenge but I think I can handle it - I just have to try and curb my natural impatience and work within the limitations imposed by my illness.

Here's how I'd like it to work:

Remodel my site from CSS css and html upwards, make it so that my blog and the cfs site fit into it more naturally
Create alternate style sheets (for printing purpos, pdas etc)
Create an image gallery for my beadwork (to link to eBay)
sort out a shopping cart and secure payment options (more hosting scripts to play with.. oh joy)
Take over the world

Ok, maybe #5 is a little on the overly ambitious side, but it'd be nice if I could actually garner an income again from something other than benefits. Because of my concentration difficulties and the headaches etc, perhaps web design is another dead end for the moment, but I'm still hopeful that something will come out of this illness apart from a lot of time spent in bed or on the couch.

I hate feeling useless.

This week oive been mostly..

2006-12-09T14:04:00.000Z

Sleeping.

Yup, the CFS has reared it’s ugly little head and attempted to steal my life again - this time around though I haven’t crumpled into a weeping wreck at the unfairness of it all. Stef took me into town on wednesday so I could meet up with Dawn, he’s a good lad really, there should be more about like him!

I’ve cancelled so many meetups with Dawn through this illness that I’m amazed she still bothers with me so I really didn’t want to miss this one but I just couldn’t face the bus journey - even though I’d been in bed for a good 4 hours in an attempt to gather some energy for the outing. Anyhow, Stef drove me in despite it being 5pm and the journey back was likely to be murder for him, I got there not long after she did and we went in to watch a cracking film.

I definitely recommend ‘The Holiday’ to anyone who likes a film that makes you laugh, cry and wince a little at the outright stupidity of some people..

Anyhow, I made it home and basically collapsed, but it was worth it. I do love a good film, and seeing Dawn is always fun.

I've also decided that I'm going to start beading in earnest and attempt to sell my creations on Ebay. I figure if I can at least make back the amount I spend on making the stuff I'm ahead of the game, at present I make things and then give them away - I can't afford to do that anymore.

I have the webspace, I have the knowledge so there's no reason why I can't take photographs of everything I make and store my 'catalogue' online and allow people to pick and choose what they want from me, I can even make 'em to order should it be required - beading is something I can do when I'm too tired to do anything else and it doesn't matter if I leave mid stitch to crash, I know I can carry on when I wake up.

Speaking of which.. I need to go crash, we're supposed to be going out for a curry with friends tonight, I'd really like to not have to beg off again - it's been so long since I had an opportunity to get dressed up and look a bit more glam than a used up dishrag!

Relapse city, population: ME.

2006-12-05T19:30:00.000Z

that's right people, I'm dead as a dodo again. no energy, no enthusiasm.. Quite frankly I couldn't care less about anything right now - just as well someone else is coming to sort out my dla and finances or i'd sit in bed and starve (if stef would let me)
speaking of bed..

The exorcist strikes!

2006-11-28T15:44:00.000Z

I was sat quite happily watching TV on Thursday night when the queasy feelings started, at first I tried to ignore them and concentrate on my program but by 10pm I'd had enough and decided to go to bed and try and sleep it off.
By 10.30 my head was down the toilet as I contemplated the contents of my stomach.

Stef came home at around 11.30ish and soon had me set up in bed with a bucket, a glass of water and a looroll - the bucket was emptied twice and he hasn't stopped commenting since on the radioactive shade of green my stomach lining comes up as.. I was not a healthy bunny.
My temperature must have been off the charts - but I wasn't sweating. I was unable to stop retching even after there was nothing left to produce - it wasn't fun, at a couple of points in the night he asked me to go to the hospital but I knew it'd stop eventually - and I couldn't face the journey there or the wait in A&E once we got there.

Anyhow, by some godforsaken hour of the morning on Friday I finally managed to fall into a fevered doze and hold down a full glass of water.
Sadly when I woke up it was with blocked sinuses, a throat that felt like it'd been scrubbed with a wire brush and just that general all purpose 'man I feel crap' sensation of having the flu.

Since Friday I've alternated between waking and sleeping - light sensitivity and headaches have been the least of my problems, I've practically none stop sneezed (3 rolls of loo paper I've used!) and I swear at some point I must've hacked up a lung.

what's more upsetting is how far back it's knocked me physically - it's pretty much exactly how I felt when I was first off work with 'an unidentifiable malaise' before they diagnosed me with cfs. In the course of 4 days I've gone through the first 3 months of my illness again - and it sucked!

I'm obviously starting to feel better today, I've managed to eat something other than watermelon without feeling even slightly nauseous (touch wood) I can talk coherently and it's not taking me three hours to conjure up a paragraph of writing - you don't know how frustrating that was - especially yesterday when I was venting my frustrations at the governments latest financial set back for me.

I was roused out of bed by the doorbell (or so I thought, just ear the infection ringing again) but when I saw the letter from the dwp I assumed it was informing me I need to re-do my claim soon.
If only!
Imagine my shock as I opened the letter to see the words:

ABOUT THE AMOUNT OF £650.79 THAT MISS VJ STRINGER STILL HAS TO PAY

After the first initial panic cry I sat and thought 'hang on, this could be one of those phone scams..' so I booted up the net and checked out the phone no. Nope, no joke - therefore it had to be a mistake because I have no debts other than my overdraft, I'm very careful to ensure everything is paid up on time and in full - where I'm aware a debt is owed at any rate!

I rang up the 0845 number on the letter and sat in thequeuingg system for about 30 minutes before I got through to a lovely lass called.. um.. Jeanette orJacquelinee - sadly my memory is pants and I neglected to write that down..Oopss..
Anyhow, she managed to tell me (after a little checking back) that the reason they are taking a third of my benefits off me each fortnight is to pay back overpayments over the last 10 years.
That's right TEN years.

From 9/9/1996 - 18/5/1997 they say I owe £575.83
From 18/9/2000 - 9/10/2000 they claim I owe £129.96

Now, Not only do those two sums not add up to the total amount the letter said I owe But how am I supposed to check this is even right? Lets face it, only an idiot would trust the governments record keeping - added to the above example; the time they suspended my benefits until I could prove where the amount from a cheque I deposited into my account came from - it was from them, back dated from their last record keeping error!

To get back to my point though - how on earth could I prove this is a debt I do not owe? For one thing, as far as memory serves, I've never had income support, which what they say the second amount is for - never mind between those dates!
Sadly I've only got my cv as proof of the job I had at the time, I'm not one of those really organised people who keep payslips forever.
I can't even afford to get my statement copies from the bank - even If I could - I don't have the concentration to go through all those transactions looking for some kind of proof they're wrong.
Basically I'm screwed.

I was just about keeping my head above water before - now.. Well, best case scenario is that I only have to pay if for a month or 2 until she can get this form to mapparentlytly the lass I spoke to has to get my file sent to them before they can request a form sent out to me, so it'll be at least 4 weeks before I can even think about receivinging it) once I have this form I'm to ring them and go through all my expenditure and hopefully they'll stop taking a third of my income.
Until then.. Well lets just say I'm glad Stef won't let me starve!

I'm going to have to stop buying in the supplements though - I can't drop my mobile because I'd renewed the contract before this letter came so I'm tied into that for another year.. Basically there's nothing else I can cut out - I was subsisting on the bare minimum anyhow, now my overdraft is the only lifeline I have - and that was already being stretched more than I liked, now I'll get to see the limit with no hope of paying it back *sniff* Me no like this!

I'm going to the doctors on Tuesday ( it was the earliest they could fit me in) so I'll see if he has any suggestions regarding my supplement loss but I can see another rapid loss of all the improvement I made this year - and there's nothing I can do about it!
It makes me so mad..

But what can you do eh?!

MMmmm cinnamon bagels..

2006-11-14T12:41:00.000Z

The nausea has gone!

*grin*

This makes me a happy bunny - can you tell? Ok, the beds still uncomfortable - but it's old, the aches are still there - but it's cold and therefore to be expected. The ear infection is still very much in evidence - feck it.
I'm mobile again.

I went into town yesterday to meet up with my gran for a drink and a chat (she's nuts, they say laughter is the best medicine right? In that case I demand my gran as a nurse) it's the first time in weeks I've ventured out alone on public transport, ok so I crashed as soon as I got back but it was worth it.

I'm back to being able to use the pc for more than 10-20 minutes at a go, this makes me very happy, perhaps now I can get on with writing those articles for the mefreeforall site - not to mention the stuff I still need to do for my info site. I want to sort out some new css layouts and there's still the stuff under construction to see to.. oh yes I'm a busy girl - in my mind..

Atchoo..

2006-11-07T11:10:00.000Z

I've been to see the doc today, clutched in my frozen paw as I left was a prescription for a new inhaler. Joy..

He's a top bloke my doc though, he never makes you feel like a waste of space - he actually makes eye contact with you and listens sympathetically to everything you say - no nonsense about him at all, just friendly professionalism.
*sigh* I do wish there were more around of his ilk!

ANyhow, it seems I do now have inflammation in my ears and he reckons I definitely have a dust allergy, I've been referred to an ENT specialist (ear, nose and throat) at hope hospital (and we all know how much I love going in there..) normally I'd have laughed when he said it's likely to be a 6-8 week wait, lets face it, most things will have cleared up by then but I've already had this for over a month and it's just getting worse and exacerbating the cfs crap with it.

I guess I'll just keep being manky and crap and take it as easy as I can, I'm pissed off though - I'm getting ulcers again, shows how run down I am - I hate mouth ulcers!

Asthma: the return.. Dan dan daaaahhhh...

2006-11-04T00:47:00.000Z

Yup, I've been dizzy and sick and generally unwell and tired - I've been putting it down to this ear infection but tonight I realised i was actually having an asthma attack - it's been so long since I last had one I'd forgotten the signs, now I realise I've been struggling with it for the last 4 days at least.

Thankfully I found an inhaler that's still in date (and 2 that are over a year out of date) though my most recent one seems to have vanished into the ether, not good.

Once again I'm blaming my latest trouble on the guy downstairs. Not only does he disturb my sleep but he must smoke upwards of 60 a day, surely he does - why else would it seep so insidiously into our flat? All we can smell is cigarette smoke, it's getting into everything - and it must be bad if my boyfriend is complaining about it too, he does not have the strongest sense of smell in the world (well, not compared to me at any rate)

The asthma making a reappearance is a blow though, it's something that used to trouble me a lot as a kid - but then my mum smoked like a chimney - as did all my aunts and my brother, I never did, I like to think of that as an intelligent decision on my part. The thing is as soon as I left home and had control over my environment, the asthma tailed off, the only reason I have an in date inhaler is because when I first came down with cfs they gave me some painkillers whose side affects were asthma so I also got a load of medication for that (gotta love it, pills upon pills upon puffers) unfortunately the one inhaler I've found actually ran out of date 4 days ago, here's hoping I find my newest one soon. I'm sure this'll be alright for now but I'd rather not risk using it for too long if I can help it.
Meh, I'm seeing my doc on Tuesday, I'll get him to check out my ears and do the puffer test to see if I need a new inhaler (I'm hoping not since I'll have to pay for the prescription as there's still no word on my HC1 application)

I really hope we find somewhere suitable to move soon.

At the sound of the beep..

2006-11-02T16:03:00.000Z

My ear infection seems to have mutated from an annoying 'water in ear' sensation to a slight case of tinnitus, and it hurts.
i get an occasional twinge (that feels like someone stabbing needlethin icicles through my ear drum) that lasts from an instant to several seconds at a time. I think I need to go back to the docs about it.
I'm also back to the really sucky low energy levels and acheyness, the bed feels more uncomfortable than ever - I wake up feeling as though I've slept on rocky ground not a mattress, and I'm just so tired it's making me narky and miserable when I'm not just crashed out on the bed or sofa looking like I've forgotten how to smile.
Bless 'im though - my mannums is putting up with it, he gave me a massage and ran me a bath this morning, I've just spent the last three hours soaking in it, not much of a relief sadly but at least when I'm in the bath I can shut up the little voice nagging at the back of my head saying I should be doing something.

I'm worried about money - again.
I know my current incapacity claim runs out on January 7th, I can't help wondering what I'll do if they refuse a new claim. I'm still at the same level of fitness I've been for the past 8 months or so - well, if you discount my current mini-lapse.
But that's the thing, I'm not getting any better - I've finally hit the proverbial glass ceiling, I'm well enough to bimble about (current crappyness aside) but I'm just under the threshold of being fit for work - even part time stuff feels beyond me at present.
Stef keeps telling me not to worry about it but I can't help it.
I know beating myself up about things is bad, but I can't stop.

I worry about how his folks view me, I worry that he will get sick of covering me for things - I now owe him a fair bit of money - something I never wanted to do. I just can't let those sort of things slide, maybe I'm too proud, money has always been a big deal for me - I hate owing people and I have to be seen to be paying my own way.. Something it's getting increasingly difficult to do.

I'm also sick of living here, It's saying something when even Stef's fecked off with the cigarette smell emanating up from downstairs, with my ridiculous sense of smell it's no wonder I'm cranky and nauseas a lot lately. That's aside from the stress created by the downstairs neighbour.
I just can't wait for this year to be over and us to be out of here living somewhere quiet, out of the way and peaceful - maybe then I can let myself relax a little, if I'm not surrounded by people and I'm somewhere that feels like it's a holiday, maybe I can quit putting so much pressure on myself.

Relief and resignation

2006-10-16T09:58:00.000+01:00

I've been 'off' for the last 2 weeks or so, I've spent more time in bed or on the couch than I have in months, the headaches and muscle/ joint aches have to be felt to be believed. At first I thought it was maybe post-holiday blues, then I thought perhaps it was down to not having enough vegepa, then I just didn't care because I felt crappy and everything hurt.

Well, it turns out I'm not in the throes of a relapse (thank god) I've just had a viral infection.
I went to see my Dr today to check out my ear because for the last 3 weeks at least it's felt like I have water trapped in it and it's been driving me nuts. He had a looksee and said, nope it's incredibly clean - there's just traces of scarring from a viral infection, that should go soon.
He offered me steroids etc to help with the clear up but I declined, it's going all by itself and if I start taking more pills and potions it'll upset what passes for a balance in my system.
Thankfully he agreed that this was probably the best course of action.

It's definitely served as a reminder though, I really don't want a relapse. I'm sick of feeling lazy and useless - I've been getting back to a stage where I can at least do things around the flat, I'd rather not end up back in bed whimpering pitifully because everything hurts and I'm too tired to do anything about it.
I just wish I could tell when I'm ill as opposed to just thinking it's this delightful disease flaring up again - it's like constantly having a mild viral infection sapping your strength, this means when I get an actual virus, I can't tell the difference!
Still, it could've been worse. At least I can still get up and move around even if I feel tired and achey, I might've ended up having a total relapse and needing stef to carry me to and from the bathroom again *shudders* not if there's truly a god I won't!

cancelled talks and oh.. it's been a while.

2006-10-13T14:52:00.000+01:00

I went to a talk today at stockport, as I wrote here on my main blog, it made little sense to me, but still remained interesting.

I've reached a plateau, or glass ceiling - whichever term fits.
I can get up and bimble about all day doing not very much of anything, but I still get tired. I can talk fairly rationally to people, i'm accustomed to struggling for words now so I can gloss over those moments almost unoticably and still get my point across. Yet i'm still not at a level acceptable for employment.

It's frustrating. Yes, I guess I have quite a good life all told, I get up when I want (though I do try to keep a schedule, with no incentive to get up it does slip) I do practicaly anything I want - as long as it's cheap (or better yet, free) but the things I REALLY want to do (buy a house, start a family) I can't do because unless I can get back to work it will never be financially possible.

Sure I could have a child now, but it would not be practical, I'd be too tired to deal with a baby, especially when stressed, which living here I would be - a one bedroom flat is no place for a family to live! Swinton itself has become a source of distaste for me, I just cannot wait to move to somewhere I don't have to constantly hear police sirens and abusive language, nor feel the need to use that language myself in order to be understood!
A place where I can go for a walk and not be confronted by gangs of kids, a place where we have space to breathe - and space to live.
I want a garden so we can grow our own herbs and vegetables - most importantly, I just don't want to be here.

sniffles and feeding

2006-10-01T19:03:00.000+01:00

I've been fighting off a cold lately, explains my lack of energy.
Since discovering watermelon I've turned into an addict, not only does it quench my seemingly never ending thirst (for about 15 minutes) but when I eat as much of it as I have been doing, it helps stem the mucal tide, must be all that vitamin C it contains..

I've also been suffering with a dull ache and intermittent pain flare ups in my lower back fillings, my HC1 certificate ran out though and I forgot to chase it up when the guy neglected to send me my application form to renew it *sigh* my own fault.
I need to get that sorted before I can get treatment though, I have no money for anything over my current expenses, christmas is going to be fun - as daddy dearest said just this morning:
"It's only 10 weeks away"

Isn't he lovely? *kill*

L'italia e fantastica!

2006-09-25T14:25:00.000+01:00

I had a wonderful holiday in italy when himself took me over to meet the folks. I managed the heat without succumbing to the aches, I felt awake and 'with it' despite not sleeping very well (though the siesta's may have had something to do with that) but now I'm home..

I dunno, was it the weather, the food, the fact I wasn't in swinton?
Either way, I felt happier and healthier there than I have done in a long time, and this was even during the run up to my period - notoriously the one week a month when himself runs for cover!

I kid you not, it was as though the cfs took a break while I was there.
To be honest though, the way I feel now could be put down to the fact I miscalculated my supplements and ran out with a week to go till I came home, at least now I know the VegEPA make a noticable difference and it's worth me spending the cash on 'em.

Seriously, even with all the exercise I did over there (and amazingly enough, having a siesta every day meant I was only as tired as everyone else and not in any danger of crashing out for a change)
I can't do that here though, I just can't relax enough - over there it was too hot to do anything but sleep, here.. it's too noisy, and I feel guilty for sleeping in the day.

The other strange thing is that the night we got back, I had trouble sleeping because my legs felt wierd - it was like the blood was bubbling up inside them, it actually hurt a little and my circulation has gone to pot again.
I've been unable to sleep properly at all since we got back. I can't get comfortable in bed, I can feel every spring in the mattress, I'm too hot then too cold, every noise wakes me up when I do doze off..
It's driving me nuts.

I keep telling myself that it's not because I've been overdoing it, but a little part of me can't help but wonder. I want to move away from here, I've now seen what a peaceful environment could do for me and Swinton is definitely not a peaceful environment. Screaming neighbours and constant police sirens do not lead to tranquility in your surroundings!

Besides, I want to look out of my window and see trees and flowers instead of gangs of kids.
Also having a little more space would be beneficial, being in each others pockets 24/7 is not healthy. This one bed flat was not designed for a couple.

I think I'll just go off and dream a little about the vatican floor mosaics again - it sure beats my fruitless search for a job.

Stress? nah.. I can handle anything me.

2006-08-27T22:10:00.000+01:00

..Or not.

I can get myself into daft situations but just lately I've done some things that, as my best mate said, are totally out of character for me.
Dumb, stupid things that have the usual consequences dumb stupid things do.
This has resulted in me feeling incredibly crap mentally - and a knock on effect of physical nastiness kicking in too.
I've spent the last few days battling fierce headaches and odd stomach mutterings - not to mention the usual cfs aches, today it all came to a head with a complete inability to get out of bed due to dizzyness for a good 4 hours or so. I managed to move to the living room and basically mainlined water, fruit and crackers all day, that and painkillers.
I'm hoping it's the worst and tomorrow I start getting back to what passes for normal these days, the dizzyness is the worst thing to deal with and I'm so glad it's rare it happens.

Guess I should just be more careful and actually try and think through my actions and what I say instead of going with the thoughtless impulse.
*sigh*
I just wish I was fit enough to work, it gets very frustrating having no answer for the in-laws when they tell me I should be getting a job and not working for free.
I wouldn't mind if I could call my feeble attempts at web design work, but it takes me weeks to do what would have once taken me days - mainly because I'm easily distracted and too tired to concentrate on any one thing for long, I make silly mistakes which you cannot get away with when dealing with code..
It's just really getting to me!

Having work comments made by his family members makes me feel as though they think I'm living off him.
I'm not, I may not have seen a credit balance in my account for the last 3 years but my overdraft takes care of everything and I don't ask him for a thing! I don't ask anybody, I never have.

I'm just sick of it - the fact that I would own my own home by now if it were not for this illness just makes it worse, I was all set to have a mortgage when this kicked in, it scuppered all my financial plans and I just can't see an end in sight to that.
Even if I go the permitted work route it means I lose my housing benefits which would leave me even worse off than I am now once you figure in the food and travel costs a job would entail - not to mention the overriding fear I have of a relapse, I just can't shake that fear, it colours everything.

*sigh*

At least financial troubles are normal, everyone has 'em and they pass.. Eventually.
I'll have an income again one day - and it won't have the word 'benefit' attached to it!

Open mouth, change foot.

2006-08-06T16:42:00.000+01:00

I hate that feeling when you've upset someone where it wasn't intended, I get really worked up by things like that and end up shutting off from the person and situation completely to stop myself thinking about it.

It's happened several times to me so I guess that makes me quite a thoughtless person - not something I'd have described from my self image. Sadly we rarely see ourselves as others do, I would not have guessed I can come across as arrogant either, but my best friend assures me that sometimes I do.
Everyone should have a best friend who can tell you harsh truths about yourself, it keeps you grounded.

For those of you interested in such things.. Here's the response Prof Puri has sent in reply to those VegEPA concerns:

The allegation that my published work is not authentic was so absurd that I did not feel it warranted a reply at the time. The Hammersmith Hospitals NHS Trust is unlikely to know the details, as the studies were not carried out using NHS resources. I suggest that this person or their consultant read the original papers and then tell me which data they think have been invented. If I have time, I could then personally show them the original data. If they are querying the neurospectroscopy study, I probably still have access to the original spectra from the ME patients and from the normal control subjects. If they query the beneficial structural MRI changes upon taking fatty acids, then I have access to the original brain scan data – fortunately, electronically ‘stamped’ with the acquisition dates.

It is a very serious matter to make such an allegation. A fellow medical consultant, in particular, should be very careful before alleging fraud. Also, these allegations are not just about me but would necessarily also have to include my published co-authors, who, like me, declared that the work described in each paper was carried out by us.

Methinks I opened a can of worms unintentionally there, and a feeling of impending doom crashed over me as I read it, I did not intend to cause any trouble for anyone when I voiced my concerns to a knowledgable acquaintance (who then emailed prof puri about them and sent me this response) sadly - it's looking as though that may be the case *sigh* I think I should just keep my mouth shut in future - though as I've said that many times in the past it's unlikely to happen in the future either..

I'm still taking the VegEPA's myself but I'ev fallen off the sugar wagon again and succumbed completely to the old boom and bust routine. That's the problem with doing something that involves creativity, you can't stop when the juices are flowing or you lose it.. Perhaps getting back into music was not my best plan of action at this stage of things *sigh*