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..

My elbows hurt.

Like, a lot.

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

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

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

I'm just sore, depressed and fed up.

Phenergan and ginger

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

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

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

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

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

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

Work or death!

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

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

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

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

Fingers crossed this works out for me!

Pacing

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

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

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

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

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

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

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

For me it was this portion that struck a nerve:

Getting your body to trust you again

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

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

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

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

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

Moving on up

..and moving on out.

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

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

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

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

Hence the chat we had earlier.

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

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

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

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

a.r.s.e.

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

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

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

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

*sigh* at least I can still bead.

weyhey!

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

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

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

Bad day

Meh, should've known.

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

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

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

Today has been a GOOD day.

Hopefully the first of many.

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

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

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

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

medical assessment hell

See here for the full story.

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

It just sucks major donkey bollocks.

And.. Calm.

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

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

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

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

It was that 'probably' that tickled Kevin.

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

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

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

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

Tension headaches and vile nastines

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

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

At least that's how it feels.

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

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

pissed off

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

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

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

is it or isn't it?

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

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

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

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

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

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

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

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

Dehydration and cfs

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

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

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

and Louise swiftly responded thusly:

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

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

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

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

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

Isn't that odd..

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

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

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

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