Back to normal

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:

1. she is now so heavy I struggle to hold her for long periods of time and
2. 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!

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

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?

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

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?

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

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

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.

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

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

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.

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

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

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.

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.

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..

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!

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

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..

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?!