CHAOSTOCOSMOS

Sunday, 14 February 2010

Fighting to stay awake

Ram statues at Karnak Could do with someone to stand under my chin to keep my head up, just like these rams at Karnak!

This morning I just could not move to get out of bed. Despite sleeping reasonably well - at least several hours, during which I wasn't half awake, vividly dreaming or otherwise semi-conscious, as I often am - yet, I feel utterly and physically exhausted, limp and heavy, where every movement or even thought requires supreme effort.

Things weren't much better yesterday, when almost as soon as I got up, I was yawning and finding it hard to stay awake.

On Friday, I just couldn't keep awake.

As usual on the day after an outing, I developed all the classic feverish symptoms of Post-Exertional Malaise among them; sore throat and swollen glands, headache, aches, weakness, trembling ... By mid-afternoon, I could no longer keep my eyes open and had a couple of hours' siesta, got up, made a quick dinner and was back to sleep again within a couple of hours.

On Thursday, I'd gone out to my pain group meeting. Before I got there, I'd walked into town to collect a repeat prescription and pick up a few items of shopping from just a handful of stores (I wanted to go the the bank too, but I just couldn't have managed any more that day), then spent a very pleasant enough hour or so, listening to an interesting talk and looking at photos from the speaker's trip to Egypt. Went out at about 11.30 and was back around 3 p.m.

The group sometimes gets speakers to talk about health matters, but this was a pleasant diversion instead. It made me think I could do the same with my photos from Tenerife and, perhaps show people a side of the island they probably don't even know exists - except I don't have the right equipment, couldn't justify the cost of a projector and wouldn't have transport or energy.

When I got home on Thursday, even though I'd been sitting for that hour or so and been given a lift home, I was still sweating profusely from the now inevitable hot flushes. I'm constantly either too cold, or too hot and never comfortable. Basically, if I move, I overheat like an old boiler whose thermostat is fucked. The outside temperature was hovering around freezing, but I had my coat over my arm, because I couldn't stand to wear it and was sweating bollocks (OK, I would have if I had any) dripping wet, hair limp and sticking to my head, while walking through snow flurries!

And I'm on drugs twice a day to *control* this already. Looks like I need to up the dose.

My face gets so red and I now have so many broken veins on my skin from the overheating that I've had to buy Vitamin K cream to try to repair them and green make-up to hide them.

Yet indoors, it will be 20 degrees centigrade, but I'll feel icy and wrap myself in blankets.

There's no sense trying to work out any logic to this failed thermoregulation. It just is.

At the meeting I succumbed to the temptation of one solitary fancy cake - and quickly paid for my pleasure as my stomach blew up into a solid, bloated and uncomfortable 9-month sized bump.

Just for those few hours, I wore an acrylic jumper and where it had a seam on the shoulder, it rubbed and irritated a spot on my skin leaving it raw and in the sort of pain you might expect from bad sunburn or if you'd had your skin stripped off. Once clothes rub spots like this, they remain sensitive forever, so I'll have to get rid of the jumper now.

Thursday evening, I was struggling to stay awake even before dinner, I successfully fought it then, but succumbed shortly afterwards, only to wake up again at midnight and then spend most of the night awake because of the tremendous pain in my hips, legs and feet.

My thigh muscles had gone into spasm, contracting and refusing to work in the cold - despite me overheating - and the resultant burning pain right down to the bone was excruciating.

Pain was also throbbing and shooting through my calf muscles and the pain down the front of my shins and in my ankles that always follows after being vertical or seated, even for a moment (caused by the pooling of blood, because of bad circulation due to orthostatic intolerance) was still dreadful, even though I'd sought to mitigate it by wearing compression flight socks.

And from both the exertion and the cold, the joints in my neck, shoulders, elbows, wrists, hands, hips, knees, ankles and feet are all once more popping and clicking painfully.

There is no position in which I can get comfortable, even lying down. It is often too painful to do anything. I couldn't even concentrate on banal TV, was in tears and at the point of screaming.

On top of that, my neck has "gone" again, such that every movement is painful and I can bearly support my head, needing to keep it upright with a U-shaped inflatable neck cushion and propped against pillows. My arms ache, my wrists and hands have been throbbing with pain, my shoulders ache and my back feels like it's broken. And that's now, 3 days after the exertion. For the last 3 days I've felt so ill I couldn't get the physical or mental faculties together to write this.

The pain in my legs and feet today is still so bad that I've had to intermittently use childbirth-like breathing exercises to try to withstand and distract myself from it - and it ain't working.

And this is how it goes every time I have to go out to any appointment. It will take another couple of days to begin to feel anything like human - although it ain't ever that great - then I'll have to start taking it easy in preparation for the next appointment, or suffer worse consequences.

The only outings I get now are for medical appointments or help groups (and I don't always manage to get to the latter if they're too close to other events). This isn't enough social interaction, yet is too much for me: the price, in terms of pain, exhaustion and feeling like shit for days on end that I have to pay to attend these appointments far outweighs any benefits I could get from them.

There's a meeting of my fibromyalgia group tomorrow and I really like going to those, because I get a chance to see new friends and acquaintances and always benefit from the discussions in the meetings themselves, but I'm just not sure I'm up to travelling, sitting or even thinking.

About all I can manage to do these days is to get up to go to the loo and to get myself and the cats something easy and quick to eat - as long as it doesn't require peeling or standing - three times a day and, just from those *exertions*, I'm ready to collapse with exhaustion again each time.

And if I don't get up and get it myself, nobody else will, no matter how ill I am!

I know exactly why some prefer to end it all than suffer this kind of non-life.

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