In pain and exhaustion

(oh, and extreme heat)

10 Aug, 2003

I'm trying to focus on other things here but pain features largely in my life right now and so it's hard sometimes to feel that things are really moving onwards and upwards. The muscle spasms I'm suffering remain virtually the same since I started on my tablets to relieve them and lack of rest is leaving me very debilitated. This has gone on for weeks now and it's becoming hard to remember what it was like to lie in bed, so comfortable that I seemed to be melting into the mattress. Instead I dread going to bed because it just represents one long, lonely session of awkward moving around in my now limited range, trying to find a position that will relieve me from the acute cramping pains. I'll phone my doctor today and see if a higher dosage of medication might help, although the thought of this has worried me a little. I feel I have more than enough to cope with already without any of these particularly nasty side effects kicking in: nightmares, hallucinations, convulsions, reduced heart function, changes in mood, speech difficulty, incontinence (to name but a few of the myriad listed). Really the list is huge and although reading the side effects listed on the accompanying leaflet is often a little unsettling, it seems to me that this drug has the potential to be particularly nasty. It interests me therefore that in this instance I've come to the conclusion that I will take my chances - anything to stop this pain.

Probably because of this lack of sleep I am feeling quite short tempered with what I perceive as other people's stupid comments relating to my current condition. In reality they are probably nothing more than well meaning comments made by people who don't know what else to say. I yesterday had a conversation with a close relative who commented that I would be well by September. This is plainly nonsense. If I am, expect to see me featured in medical publications as the 'miraculous wonder woman'. I do not have the flu or a broken leg - part of my brain has been destroyed and I am currently trying hard to re-programme another area to take over a significant number of lost functions. In fact there is every possibility that even now my body is attempting to repair that original damage. I don't expect everyone to know this but I do expect everyone to have enough of a rudimentary knowledge of the subject to know that it is serious, it takes time to work through and that whether I am ever lucky enough to make what might be perceived as a 'full recovery' is totally in the lap of the gods. I may never 'get better' - not by their simple definitions. I just think that instead of making plainly stupid comments perhaps a more helpful idea would be to ask about my general progress and then let the conversation naturally move on to other subjects. Like I say, tiredness and pain is probably making me overly touchy on this subject but right now I feel entitled to be a little grumpy about this

I feel I'm learning so much here since my stroke. For instance, for the first time I really do understand how it feels to be disabled. I thought I understood before but there is a vast difference between observing and living it day to day. You have to be on the receiving end of crass stupidity and insensitivity to really know how it feels to not fit the perceived 'norm'. I'm told that in my appearance I look very well - in fact, quite ironically, better than I have for some time. My face no longer has that telltale droop on one side which is a dead give-away of a stroke and any difference in my speech is now imperceptible to all but myself. The only thing obviously and immediately different about me therefore is the fact that I am sitting in a wheelchair. This, apparently, to some people makes me a combination of any or all of the following: invisible, mentally retarded, blind, deaf, a burden for my poor devoted husband. Just as an example... Alain and I went to the hospital recently for my meeting with the consultant. We went up to the main reception desk where we explained the purpose of our visit and the woman at the desk told Alain to go and check in with another girl and he could 'leave the lady here' (said without even looking at me). This comment went over the top of his head and he straight away wheeled me over to the other desk where I could check in for my appointment. I, however, found her comment rather offensive. I appear to have become a non-person, something akin to bags of excess shopping if I am to be left in a corner while the real people go and deal with matters. It was particularly sad to find this attitude in a hospital.

I have also learned to appreciate the simplest things, again something that I probably paid lip service to before but didn't really fully comprehend. Every day I notice the loss of the simplest things because I only have my left hand to work with. I've been frustrated to the point of tears by silly things like my inability to unscrew the top of the toothpaste or to open my make-up compact. I've been saddened to watch things like cookery programmes and not know when or if I will ever get back to this enjoyable hobby. I've been happy when a visitor admired my framed embroideries and then sad when they left because I wonder if I will ever do another one again. I've angrily thrown down a pen because I am forced to slowly write in a child-like form with my left hand instead of the pretty writing that flowed so easily from my right hand. It's other things as well which involve the rest of my currently impaired body - a long list of seemingly minor instances which put together leave me feeling occasionally desperate, sometimes tearful and always wistful that I didn't appreciate a gloriously fully functioning body when I had it.

The only way to deal with the magnitude of all this is to be quite stoical. This is the lot I have been given - now I must find the positive and focus on all the tiny improvements that are happening each day even if I haven't so far noticed them. In one bout of melancholy recently I did my usual - in an effort to shake off the blues I started to look for the good things and this time found great comfort in the fact that something very significant indeed had occurred. When I first started walking again I felt as though I was continually standing on the edge of a very tall cliff. I had to force myself to get out of the chair and with every step I thought my legs might give way or I might fall. On thinking about it I realised that whilst I still lack a good deal of confidence, just recently walking is becoming the norm again. The technique might need serious improvement but at least I am doing it without that feeling of abject terror.

Just occasionally something more immediately and obviously significant will happen and I can't begin to describe the joy when such things occur. At 9 weeks for instance I regained slight movement in two fingers of my right hand - a huge reason to be happy because up until that point I feared that my hand was going to remain useless. Then yesterday I jumped a huge hurdle in my progress back to normality. For 15 weeks now I have made do with washing myself at the wash-hand basin, using a flannel and sponge because I could not get into our bath to use the overhead shower fitting. Yesterday I found that I could at last manage a shower. To feel water once again flowing freely over my hair and body (especially in the extreme heat we are experiencing right now) was truly wonderful, exhilarating and amazing. In fact it felt 'liberating' - a huge leap towards being 'me' again.

I feel very much better for having recorded all of this here. Writing down how I feel I think helps me to cope with it all. At the risk of making this sound like the gospel according to the righteous Saint Me: Whatever comes or goes, be thankful if you are sound in mind and limb - no I mean REALLY be thankful.

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One bit of news that only obliquely involves me...me...and more me. It's hot here, damned hot. Both Britain and Smallville here specifically have hit their highest temperature ever. Saturday was over 36 degrees centigrade (100 fahrenheit) and wiltingly hot for those of us used to a temperate climate (which means no air conditioning in most places and many homes not even in possession of a fan). Our sea temperature here has hit 20.6 degrees (about 70 fahrenheit) and our marine life has been devastated. To top the strain that our little eco-system is under from these unusually high temps, the island has also been hit by oil pollution - thought to be possibly from the Spanish Galician coast disaster. I haven't been down to look but our local paper advised that anyone using our main surfing bay should only do so in a wet suit because of the cancer risk posed by this stuff.

It's terrible to hear of this kind of devastation. I spent my childhood pottering around on the beach by our house and so all the thousands of plants and animals that inhabit the oceans around our island are very familiar to me and are a very, very precious part of our little piece of paradise. I'm devastated to think of so much being destroyed in this cruel double whammie of man and nature.

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