CHAOSTOCOSMOS

Wednesday, 20 April 2011

Easter Buggery and a Kindling interest

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These days, I’ll use any excuse to pretty up my surroundings – funny how I didn’t feel the need to do this when I lived among the constant beauty and magnificent scenery of Tenerife – so yesterday, I stuck up a bit of Easter bunting, peppered a small wreath with artificial daffodils (the eggs I was hoping to decorate it with caused me so much grief, they ended up just being thrown in a basket) and, finally arranged a few silk Spring flowers.

To do this, I was sat up in bed for a little while longer than usual and on my feet for an extra 10 minutes or so, having made a handful more journeys to the kitchen and back or the hallway outside my bedroom door (yeah, long-haul!)

Just that caused unbearable pain in my feet and ankles (from, yet again, the pooling of blood that my heart can’t pump to my head) that was so severe, I couldn’t get comfortable in bed and spent a whole night with poor sleep, even though I’d spent the afternoon with my feet elevated to help mitigate it.

Today, I can bearly stand up at all without my feet and legs giving way or my head going swimmy and the waves of malaise and nausea crashing over me.

To arrange the flowers, I needed to cut half a dozen relatively thin plastic covered wire stems with wire cutters. Clearly, I shouldn’t have really: it was difficult – I hardly had the strength and grip – and painful at the time; so much so that my mother (87) had to help me finish doing this. By last night, my hands and wrists were so painful, I couldn’t even bear to rest them on the bed. The pain in them is making me feel sick today, despite medication.

This seems an inordinately high price to pay just for some “cheap”, transient decorations and the physical pain right now is threatening to overpower any psychological benefit that I might have derived from cheering myself up.

On a positive note, however, while we are on the subject of hand and wrist pain, I finally broke down and bought myself a Kindle.

For years now I’ve not been able to read books because I couldn’t comfortably hold a book for long enough. It would hurt my arms and wrists, then neck and shoulders; leaning the book on my stomach would hurt; the light or angle would never be right for me to be able to see well enough: in short, it had stopped being the pleasure I’d once enjoyed.

There’s still the problem that I can’t often concentrate or take in more than a few pages at a time, but at least the Kindle is proving to be a great help towards alleviating the physical problems. I still can’t hold it up, as suggested in the advertising images, but I can hold it for a lot longer than I could have held a small paperback book, provided I rest my arm and hand on something.

Turning the pages is a much easier task with a button either side of the Kindle, so I can alternate hands too and, the screen is much clearer and easier for me to see than print, especially as I can change the size of the text.

Whilst I probably won’t use it often, even the robot voices that read out the text-to-speech function are bearable enough to listen to, if all else fails.

If you have any similar afflictions and are considering a Kindle, but are not sure if it’s worth the investment, my hunch and experience says it is.

So far, I’ve downloaded all the free classics I never previously got around to reading (I do hope to one day, even though the experience may be a little tainted, having already seen the DVD), plus some reference materials that may come in handy.

Additionally, I’m already about a quarter of the way through reading John Mole’s “It’s All Greek To Me!”, which is a fairly amazing feet given my usual ability, since I only opened the Kindle box on Saturday.

There will still be a handful of books printed on dead trees that I shall keep for the time being, while I already have them and they’re not (yet?) available as a Kindle edition, but those which are, I intend to swap. Hopefully, selling my books will help fund their replacements.

It’s funny, but despite all the advantages, the fact that I’m not resistant to change and consider myself tech-friendly, it still doesn’t quite feel natural holding this small technological version of the old school slate instead of a “proper” book. I’m sure I’ll make that adaptation rapidly though.

Above all, I want the freedom that not lugging books around, whether one-by-one to read, or in bulk when removing, which this gadget will bring and, better, no more trees need be cut down to provide my reading material.

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. Just for a coffee.
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. What I’m going to do in future, I have no idea.
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

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 has 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!

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