Sunday, February 25, 2007

a.r.s.e.

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.

Tuesday, February 20, 2007

weyhey!

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.

Monday, February 19, 2007

Bad day

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!

Sunday, February 18, 2007

Today has been a GOOD day.

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!

Thursday, February 15, 2007

medical assessment hell

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.

Friday, February 09, 2007

And.. Calm.

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.

Tuesday, February 06, 2007

Tension headaches and vile nastines

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.

Monday, February 05, 2007

pissed off

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.

Friday, February 02, 2007

is it or isn't it?

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?!