Monday, 4 April 2011

A morning ritual

I’d only been standing for a few moments when the pain started in my ankles and lower legs – this is from the blood pooling as my heart is unable to effectively pump it upward. The now ever-present stabbing pain in my right hip is cranked up a gear and then a different stabbing began in my already swollen and stiff feeling knees. At the same time, my head began to ache; a cross between stabbing and throbbing, with a bit of compression thrown in for good measure and an overwhelming wave of sickness rose up and over me, bringing with it an even more overwhelming immediate need to sit or lie down.

The discomfort is so severe, it causes me to catch my breath. I have to concentrate hard to hold on just long enough to get my cup of coffee. The pain in my neck and back were already high on the scale, but as I held the cup under the spout, my arm and shoulder started to go weak and hurt. It seems like it takes an eternity. It feels like torture.

These days I use cups and saucers, not because I’m posh, but because after I’ve had to stand to get the coffee, I shake too much to carry it without spilling some. More and more it seems, my balance is off, so that I walk into walls and doorways too and the increasing weakness in my arms makes even the smallest items too heavy.

Now that I’m lying down again, I’m having difficulty focussing my eyes, focussing my thoughts, composing these words – but I want to get it down immediately so that I capture the true horror – and I’m shaking even more from the exertion. Not a particularly marked shake, but still a discernable tremor in my hands. More apparent, to me, is the feeling that my brain is “shaking” – I assume this is actually pulsations as my heart overworks to get blood to my brain – inside my head, making me feel all the more sick and unsteady.

To be fair, not all days are quite as bad as this, but they’re never far off.

Yesterday morning it was sunny and so I decided to walk round to the local shop and get a sandwich for lunch. It’s only about 400-500 yards, but I get about a quarter of the way these days and wish I hadn’t started. It feels like climbing Everest: it seems to take forever, but I push myself on reluctantly, every step jarring my neck and sending sharp stabbing pains into my hip. I always get home exhausted. Yesterday was no exception. I ate my lunch. I didn’t even have the energy to eat the treats I’d bought myself too before I had to lie down, but I was in too much pain and beyond tired to be able to sleep, so I just had to lie there and try to find a comfortable enough position.

My neck and back hurt too much to sit up or even recline at a low angle. I had to be flat enough with just one pillow to support my neck and try to lie on my side so that I can still, just, watch TV on the Laptop, albeit that it appears at a 90 degree angle from true. It doesn’t really matter what’s on. But the pain in my legs has become so severe that I can’t lie like that. The pain in my knees, which feel swollen and almost like bruised, mean I cannot rest one leg on top of the other and have to place a cushion between the two. The pain in my foot is so bad that I can’t bear to even lay that on the bedclothes. I try another pillow, another angle, dangling it off the side … nothing works. If I find something acceptable for my foot, it pulls on my hip joint and makes that even more painful. The painkillers I’ve taken make no difference.

So I spend the rest of the day in a sort of trance, just trying to stay in a position that doesn’t hurt too much. I’m still not aware of what was on TV.

At about 8.30 p.m., I get up to get a cup of tea. I feel too ill and can’t stand long enough to get food, so I don’t bother. I come back to bed, take my medication, which, thankfully, means I will be able to get some sleep.

That was my whole day.

Saturday, 2 April 2011

Laziness versus Pacing

Laziness versus Pacing

It suddenly struck me when I saw this LOLcat image that this is how others view us. Pacing: stopping well short of what you might be able to do to avoid exhaustion and flares is extremely important to sufferers of fibromyalgia and ME/CFS.

My occupational therapist at the Pain Management Centre had spoken to me about it, saying I should aim to do half or two-thirds of what I think I can manage and gradually work up towards doing more. She says I need to pace better when I mention the 1 mile walk that is too much for me, but for which there is no alternative as it’s a mile to town, a mile to the bus stop, a mile to the train station, a mile to the doctors’ surgery … This means I can only go out once in a while, for essential appointments, which send me hurtling into mega-flares, then rest for days / weeks, rinse repeat.

All of the rest of the time, at home, I’m either too exhausted to do anything, or I’m pacing well below my capabilities in order to save up some energy for the next outing; not fun ones, mostly just hospital and doctor’s visits.

This latter is called “laying around” to anyone else. They think it’s laziness.

They should try to live a day with the amount of pain and fatigue we have: they wouldn’t be pacing, they’d be demanding the euthanasia pills!