CHAOSTOCOSMOS

Saturday, 9 May 2009

A bad week

Last Sunday night / Monday morning, I'd still been awake at around 3.30 a.m., finally managed to doze off, but then woke again at 6 a.m., feeling like the proverbial death warmed up. Each day I've felt as bad, if not worse so I've tried my best to rest, hoping to recover enough to get something done. Now, at the end of the week, I still haven't managed to get over it, instead dropping ever further down into the pit of pain and exhaustion.

Really, I'd wanted to write something each day this week (because I'm supposed to be keeping a note of my symptoms), but I've honestly felt too ill to do so.

Today I woke up with extreme nausea and the very same pain in my back, in the region of my left kidney, that I'd had when all this started - when I was rushed to hospital as an emergency - way back in 1995. [1] Every time I get stressed and tired, that same pain, nausea and terrible malaise and, along with it, incredible thirst and even more frequent peeing than usual, returns.

Most mornings this week I've woken up way too early, though fortunately, I've managed to get back to sleep again, but then I've woken late, with a headache.

And on top of the headache, as the week wore on, my symptoms have increased in number and/or intensity and include; flu-like all over aches, shivers and / or sweats, stiffness in my neck and shoulders, my biceps and triceps feel so weak and ache so much that at times I've hardly been able to lift my arms off the bed, carpal tunnel pain just won't go away - a couple of hours rest and I can just type for another 5 minutes but it hurts so much - my lower back aches (but then it has, constantly, since I was 16), the pain in my hip (from a fall in 2001) is excruciating to the point of tears, my thigh muscles are tight and feel like they've done a marathon at sprint pace, my knee joints hurt beyond anything I can put into words and have to be constantly "clicked" to relieve the pain; my calf muscles feel like they've been dancing day and night in stiletto heels; there's a pain down my shins I can hardly describe - a drawing down feeling accompanied by a bruised feeling like they've been beaten with a baseball bat - and that's so bad it makes me feel sick to my stomach; my feet hurt everywhere and whenever I stand up, I feel weak, exhausted, lightheaded, my eyes close involuntarily and am overcome with a feeling that I'm either going to faint or nod off to sleep while walking (just to the kitchen), I become short of breath, get chest pains and need to lie down again within only a minute or two.

On Thursday, I'd made it to go out - against my better judgement, partly because I had to go to the bank and partly because I'd been invited to an important meeting - but I'd had to sit in a chair for much longer than my body can cope with and got I colder than my body can stand, so the post-exertional relapse is worse than ever.

This afternoon, to attempt to clear my head and keep myself moving so I don't totally cease up, I walked (all of a couple of hundred yards) to the local corner shop. It's May and the sun was shining, but the wind was a bitter and biting cold. I can no longer walk fast enough to keep warm and it makes no damn difference how well I wrap up against it, so this cold just gets right into my bones and makes every ache and pain hurt even more. Not even half way there, I'd really had enough. By the time I got home, I was literally dragging one foot after another, hurting so much and so exhausted, I just want to cry.

It actually seems that every time I go out, the negative effect and the severity of the pain and symptoms I suffer afterwards keeps increasing. I'm trying to do what I can, particularly to get to support groups and things which should - theoretically - help me, but it's constantly a "one step forward, two steps back" scenario.

This week the pair of Reebok Freestyle that I ordered arrived, so my ankles were more supported and are not in quite as much pain as they have been on other recent outings I've had to make in shoes or sandals, however, despite taking buses and keeping my walking down to a minimum, these are not as good as the boots with thick rubber soles I used to be able to buy in Spain and the soles of my feet and heels feel bruised and beaten.

No matter how much I rest, it's is never enough and I never "get over it". Because I have no help, not enough public transport, etc., it's impossible to pace activities avoid the "all or nothing" approach that leads to these constant relapses and, no matter how much I want to keep doing a little, I am constantly able to do less, rather than being able to build it up to more. 

I just don't see a solution though.

[1] Note here it says, "You have to have 4 of these 8 symptoms for six months or more to meet the research definition for CFS." Well, I've had all 8 (and the rest as well as at least 61 of these fibromyalgia symptoms) for 14 years. For the last year, due to the British climate, additional stresses and other reasons, the symptoms of these have been worsening in severity and now impact and add restrictions on every aspect of my daily life. In November 2008, I was finally diagnosed with both Fibromyalgia and Chronic Fatigue Syndrome.

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