CHAOSTOCOSMOS

Thursday, 4 March 2010

More Malaise

There is so much that I want to do today, but I just do not have the energy and I am in far too much pain. First there's the deep burning, aching, stabbing, gnawing pain in my hip that does not respond to any painkiller I've ever tried and is so bad it breaks through any efforts at distraction with nauseating and tear-inducing regularity. I can't stand on it, I can't walk on it, I can't sit on it, I can't lie on it. I just can't tolerate it. Then it refers pain down my leg.

And please don't tell me that some psychobabble pain management technique (however well meant) is going to be able to do anything for this either. It needs a ruddy miracle!

My visit with the physiotherapist was helpful in a way. After I told her what a massive fail I'd had trying to do the exercises she gave me - I had tried several times, but even keeping down to 2 repetitions the pain it gave me was so severe I'd then spend the next three nights having great difficulty sleeping because of it. It had me in tears and was far too much to bear.

Thus, she says, she cannot really do anything for me. She wouldn't even risk doing any work manipulating me, because it could cause too much hurt. (For the same reason I've shied away from getting massages or going to chiropractors.)

But at least she recognizes that this is because of the ME and is not my fault, which is a VAST improvement on the general attitude of "if you'd just get some exercise", or worse.

The bad news is that she would prefer me to go all the way to Poole to see the physiotherapist at the pain clinic for my ongoing treatment. Frankly, I have no idea what they think I could do, so hopefully it won't take too many visits to discover it, because it's hell of a journey.

Normally after any outing I will come home, collapse and involuntarily fall asleep from exhaustion, then I'll wake up in the middle of the night and be unable to get back to sleep again because of the pain. When I got home yesterday, it wasn't easy, but I managed to keep awake and so was rewarded by an entire night of restless, semi-conscious painful dozing.

This, I suppose, is marginally better than getting no sleep at all, but it's still no substitute for the real thing. Although I cannot tell you when the last time I had an actually restful night's sleep that allowed me to get up feeling properly refreshed: even when I was a kid, I started every day exhausted and had genuine, grave difficulty waking up.

image Today my neck feels so weak and painful, again, that I can bearly hold my head up even for a few minutes. If I want to remain in a reclining position, I'm having to support my neck with a neck pillow.

Yesterday, I went out by taxi (which is less painful or exhausting than walking or going by bus) and I only had to wait 10-15 minutes for my appointment, but just that amount of movement and that long sitting in a chair was enough to cause the pain in my neck and in my legs to flare up dreadfully again.

It was making me feel panicky, because I didn't think I could manage to sit there any longer and wanted to be sick. I couldn't sit upright. I really wanted to lie down. And I couldn't turn my head even to look in the direction from which I would be called. Add to that extreme nausea and sweating from yet another hot flush and the situation was fast becoming unbearable.

Now I'm adding a neck support to my arsenal - although it has to be said that between skin sensitivities and the hot flushes it's unlikely that I'll be able to put up with it for long, as I've already experienced with some wrist, knee and back supports - because I have to try.

As this article, written by a nurse, says, "... neck muscle weakness can lead to a vicious cycle of limited head mobility and a stiff neck (resulting in pain and impairing head mobility ever further), causing more pain with emotional distress." Yep, that about covers it.

My concern was that mollycoddling it with support might make my neck lazy and the situation worse, but the nurse suggests that, "Wearing a soft collar or a neck brace, called a cervical collar, is an effective method of holding up the head if this is difficult. A collar supports the head when the person is walking or being transferred from one sitting position to another. To protect against injury from sudden motion, people with advanced neck weakness should wear a collar when they are moving or being transferred from one seat to another, when walking, or riding in the car." I'll feel like a prat, but if it'll reduce the amount of pain, so be it.

The awful pain I get in my shins if I sit in a chair or stand (even for moments), I attribute to orthostatic intolerance. After my appointment I called into the pet shop, went to buy a stamp (only had to wait for one customer, otherwise I'd wouldn't have even attempted that) and went to the bank (again, I was lucky to be only next-but-one in line), but even this tiny amount of walking (max 200 yards) and standing has caused considerable problems.

Today, every time I get up, I feel lightheaded, my thigh muscles begin to spasm and my shins scream in pain. The pain in my back is nauseating and in my knees is beyond excruciating.

I'd made a point of walking between each destination at a relaxed pace. I'd carefully worked out where I needed to go, so as to avoid doubling back on myself. I didn't browse in any other shops at all before getting a taxi back home. I couldn't have done more anyway.

Adding it all up, getting a taxi both ways has slightly reduced - but certainly not eliminated - the amount of exhaustion caused by the outing and, maybe the recuperation period will be slightly less (normally, it takes a whole week), but doing so has done little or nothing to mitigate the increase in pain brought on by sitting, standing and / or walking anywhere.

This is where the medical profession's opinion and my experience begins to differ widely.

Here in the UK, they are seeing me as someone newly diagnosed (in 2008) and keep suggesting that with exercise I can build myself back up to being able to do more normal things.

Even ignoring all the reports that suggest otherwise in the case of ME, my own experience over the last 15+ years, during most of which time I was getting at least the RDA of 20-30 minutes walking, is that I just kept deteriorating and never built up this elusive tolerance (then I came to the UK & the combined stress, climate, pollution, et al threw that deterioration into overdrive), I reckon - being realistic, not defeatist - the chance building myself back up is zero.

Of course, I can't possibly afford to get taxis every time I need to go out. I avoid the bus, because there are so few of them and they aren't much cheaper than the taxis, as well as the fact that their jolting causes me more pain than anything else. Because of the pain, stiffness and weakness in my neck, shoulders, arms and wrists, I wouldn't be able to propel a manual wheelchair. And I couldn't go a whole mile to the shops even in a power wheelchair. I don't drive and wouldn't do so, for safety reasons. Likewise wouldn't even risk driving a mobility scooter, but again, that wouldn't be much use to go the distances required, would be a bloody liability in our high street and would be unusable in the cold or rain (364 out of every 365 days.)

Basically, I'm buggered unless I can live nearer to the shops and in another climate.

Which is, of course, what I've been saying all along. Not that my needs are ever considered.

Bonus new symptom today: irritating, incessant chesty cough that seems to think I have loose catarrh - which, if I do, developed from nowhere.

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