CHAOSTOCOSMOS

Saturday, 15 May 2010

Life on hold

image Thursday afternoon, I went out - to a meeting of my pain support group - and, once more, had a disturbed night and very little sleep afterwards.

The pain in my neck, which becomes acute after having to hold my own head up for an hour or so, plus the pain in my legs, which likewise is always triggered if I have to spend any time in an upright position, even sitting, had kept waking me.

Friday morning, I woke with the sore throat, feverish headache, sore muscles and general flu-like malaise that always follows any outing. Was only conscious for around 3 hours before I began struggling to keep awake, my eyes gritty, tired and having trouble focusing. As I couldn't manage to do anything - I couldn't even sit up - I lay down to watch TV and promptly fell asleep.

Not that I felt any better when I woke up, nor the next day.

Is this a flare or a particularly bad time?

Nope, this is just normal for me now.

Last week on Thursday, I dragged myself out - not very far: 500 yards maybe - to vote and walking back I felt so exhausted, in pain and ill I really wasn't certain that I'd be able to make it. Got home, collapsed in a heap and went to sleep.

On the Friday, I had a medical appointment, which required me to walk over a mile to get there. Doing so was a torture of pain and exhaustion and when I arrived it took a good half hour (I was early) of resting, drinking copious cups of water to cool down from the hot flush that had me overheating, sweating, with my head pounding and feeling so nauseous I really didn't think I was going to get through the interview without puking or passing out.

That pretty much put me out of action for the entire weekend.

Even earlier in the week, I wasn't sure I'd be up to another outing on Thursday and, to be honest, if it hadn't been for the fact that this is only a once a month date and I'd missed the previous month, I probably wouldn't have gone.

And this is still simplifying and glossing over 1001 other symptoms that I just feel too ill to take the time to describe fully - amongst them dizziness, lightheadedness, unsteadiness, trembling, not to mention stomach pains and another recent battle with the constant constipation, despite my vegan wholegrain over 5-a-day plus psyllium husk supplement roughage regime.

Today I have pain in my back and my chest again in addition to the nausea and flu-like symptoms. I've also been invited to a charity open day - a charity that helps me, so I feel duty bound to make an effort - but once more I really don't feel up to going out. Or, to put it another way, if I do push myself to go, I'm not sure I'll be able to manage my next outing to the fibromyalgia group on Monday, which will also be beneficial and that I've also missed for several months.

Basically, more than one outing a week is too many.

This is something I proved last year when I did a course that was supposed to teach me how to deal with my chronic illness and still had to go to doctors' appointments during the same 6 week period.

It took me months to recover from that and my tolerance certainly hasn't got any better since. And, while my pain levels rise to above excruciating if I get cold in winter, the warmer it gets in the UK - with the humidity remaining up in the 80% and above bracket most of the time - the more sick I feel.

I just live in hope that I might return to more manageable symptoms in a warmer, drier environment one day. In the meantime, my life is literally on hold, but unless you've actually felt this yourself, I'm not sure how I can explain adequately just how desperately unbearable this feeling is.

2 comments:

cinderkeys said...

I have to suspect the value of a course on how to deal with your chronic illness that makes it more difficult to deal with your chronic illness. Sheesh ...

Pamela said...

Yeah, I hear you! :)

It was a combination of factors really; I had to walk over a mile to the bus stop and bus was the only means to get to the venue, buses with all their jolting are very painful for me and I normally avoid them, but then for the course - Self-management of long-term health conditions - we were expected to sit in small, uncomfortable, upright chairs without even arm rests for hours. Well, as I say, I am normally unable to sit up even and spend my time reclining, with my feet up in a position I've carefully arrived upon to mitigate pain.

And, on top of that, sadly, many of the things they advocated, either I knew already, or had tried and just would not be effective against the severity of my symptoms.

For someone with, shall we say politely, limited creative thinking abilities, some of these suggestions might have been news and even useful. Sadly, like most things these days, it seems aimed at the lowest common denominator.

And, on top of doing that, having to struggle to walk a mile to doctors appointments too, was just too much. The exhaustion became cumulative and my abilities diminished the more I tried to do, until I had no choice but limit myself to the absolute essentials only.

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