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?!

Dream a little dream of ME

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

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

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!

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:

1. 2007-2008 Maths GCSE at grade c or above
   
2. 2007-2008 Learn mysql and php
   
3. computer science degree - preferably one with a work placement year.
4. job within the I.T industry
5. network network network
6. 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

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

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

..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

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

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..

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..

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

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

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..