24 March 2009

It's been so long since I wrote anything. I've been putting down the entries that I had written ages ago, without thinking about the present.

Life is ok. Not great, but ok. Let's see what's happened since my diagnosis. I have a lovely MS nurse. She monitors my progress (not sure that's quite the right term) and provides a link to my neurologist when things go wrong. And they have. I've had several relapses since the diagnosis, and an episode of some random virus that laid me out for a couple of days. It's strange that something that would ordinarily be a 24 hour dose of diarrhoea has a more profound effect on me, making it hard to walk at all. But that's just the way it goes.

18 July 2007

Today I saw Dr Rose. He’s been investigating me for possible myasthenia gravis. Nope, I don’t have that. What I do have is MS. Nothing more and nothing less. Which I suppose is good.

Other plus points to come out of today include that the CT scan showed no abnormality in my chest, which would seem like a cue to give up smoking again. Well, once I’ve finished the present pack (now I couldn’t waste them, could I?). Oh and unless I decide that a bit of weed might be beneficial to my quality of life, but that’s an issue for another day.

But for the moment, things are quite positive, all things considered.

17 July 2007

I was wrong. The event the other day wasn’t a relapse, just the effect of being over-tired. Charlotte has been researching MS (I’m sure she knows more about it than I) and tells me that a relapse lasts for a day or two and causes real changes. I was just dragging my feet to the station in the morning and by later in the day I was back to normal, or at least what passes for normal these days.

I realised that effect of tiredness most acutely today, because for some reason I couldn’t get to sleep last night. I was in bed soon after 11, but I just couldn’t drop off to sleep. I think I finally got to sleep about 1.30, which wasn’t great. As a consequence, I feel knackered today, as I always do when I don’t get enough sleep. On the plus side, I know why I feel so crap.

Other than that, things are unchanged. I am sort of excited though at the prospect of getting back to the gym. I kind of think that I’ve maybe seized up a bit since I haven’t been exercising (the swine closed the gym for refurbishment) and perhaps I’d even get more energy and mobility from it. Anyway, it’s worth a shot.

13 July 2007

I had the most interesting (yes, really) appointment the other day. It was with Prof. Christopher Miller to repeat the EMG tests. I am told he is the top expert in the country in myasthenia (and, no doubt, many other things) He was an interesting, and apparently interested, and very kindly person. He did a different kind of test to the last EMG I had, but I guess there’s more than one way to skin a cat. It was still about measuring electrical signals along nerves.

He described it as a tap on the head which he was detecting via electrodes on my shin. I’m not sure if it was a ‘tap’ or am electrical impulse, but anyway it felt like a tap on the head so I guess it was. He did some baseline measures and said categorically that it’s not myasthenia – and that he’s probably seen more cases of myasthenia than anyone else.

The idea was then to get me to reproduce the feelings of fatigue, so I walked rapidly up and down the corridor. I only needed to go about probably 30 or 40 yards before I could feel my feet begin to drag.

He repeated the test and against a baseline time taken for the nerve impulse of 49 m/s (if I remember correctly) the time taken had increased to 66 m/s – about 33%. So he thought this was extraordinary and speculated that it was caused by the fractional warming of my muscles/nerves caused by exercising, maybe as little as 1/10 of a degree could have an effect. He didn’t advance any theory as to how I might be able to improve it, but perhaps Michael Rose will when I see him next.

Now the strange thing is, is this connected to the MS, or something completely different? It doesn’t sound like it’s connected, because MS seems to be all about permanent nerve damage, not transient changes affected by environmental factors. Or perhaps I really know less than I thought.

6 July 2007

I wasn’t going to write anything today, because I only seem to write when I feel bad. But then, with time hanging a little heavy on my hands, I thought perhaps I’d write about how I feel on a ‘normal’ day, or what passes for normal these days.

The day has been uneventful (this has the makings of a very dull read). I was a little late to bed last night, so felt tired this morning. As usual, that makes getting started, the walk to the station, etc etc, a little more of a trial that usual. It’s still surreal having to think consciously about things as basic as walking, but that’s the way it is.

I didn’t have to rush to the station as I’d left in plenty of time (well, to get my late train anyway). Curiously I’m not convinced that walking more slowly is actually any easier. I was always used to walking at a fair clip and it seems that even now going slowly isn’t a solution to improving how it affects me. Fast or slow I seem to end up just as exhausted just as quickly. It’s almost as if it’s distance travelled rather than effort expended that counts, which is as bizarre as it is almost certainly a figment of my imagination.

I’ve kept my brain fairly lively today, which has helped me stay awake and fairly alert rather than, as is fairly common, periodically dropping off.

How positive do I feel? Fair to middling I guess. I still regret the things I can’t do, but in slightly weird ways. I was out in Canada Square at lunchtime and they are relaying Wimbledon. It crossed my mind that I will never be able to play tennis. Now, I haven’t played tennis in at least five years, and didn’t have any intention of doing so. So why do I care? Because I want to have to option, the possibility, the choice.

Without choices, how can we be free? Of course physical activities are not the be all and end all of life, but it is more than a little irritating that a whole swathe of options has been denied me.

2 July 2007 (extra)

I was trying to find the right way to express this, and the right medium to use. I still don’t know if this is it, but here goes.

I am once again feeling frustrated. I spent a fair part of the weekend sleeping. It feels good. It’s the only time I don’t feel exhausted. Obvious, perhaps, but normal people wake up from a good sleep feeling refreshed and alive. I don’t.

I feel frustrated because there seems no solution, no end, no way out of it. It just goes on and on and on. I can’t seem to get any symptomatic relief, or any treatment, or drugs to slow down progression, or fucking anything.

Am I angry? Well no, ok, I don’t really do angry. I just stew and mull things over and feel like there must be something more than all of this.

The constant tiredness and lack of balance and inability to walk any distance is really pissing me off.

2 July 2007

I had sort of vowed, privately, not to write negative stuff, largely on the basis that I no longer need to. I also, at the outset, vowed to use this as a medium for expressing how I truly feel. Today, those two vows present me with a problem, and I know which one wins.

This morning I felt very negative. The situation with the suicide bombers has undoubtedly contributed – so the natural reticence to having my routine disrupted by these irritating ticks turns into wondering if it’s all worth the effort. Let me try to explain.

I’m not sure what a relapse is, to be honest. The doctors have told me it’s only ex post facto that you can even say if and what, and so on. So anyway, this morning I set out just fine for the station, a bit of aching in my neck (which seems to be an everyday first thing in the morning type of occurrence) but otherwise ok. About half way, there I was dragging my feet and struggling just a bit to keep going.

So it runs through my mind, as things do, what’s the point? What is the fucking point of it all? Aside, of course, from my boys and Charlotte. But then that is also part of the problem. Can I really ask so much of anybody? What about when it gets worse – which seems to be the only thing they DO know about MS. It all seems pretty bleak.

So I try to be positive, and most of the time succeed. In truth, most of time I don’t think about it at all. I’m lucky, I guess, that my conscious mind tends to focus exclusively on one thing at a time. So under normal circumstances I don’t think about the MS at all. But sometimes, when I contemplate going somewhere, like anywhere, it comes into sharp relief. That in itself is a sad and somewhat depressing thought.

22 June 2007

22 June 2007

Well, I guess it was bound to happen sooner or later. I think I’m having my first relapse, well the first since my diagnosis anyway. Yesterday evening I was ok – not great, but ok. I was tired, but then it’s been a busy day, a busy week. During the evening I was getting around fine, up and down stairs as well as I usually do. But when I went briefly into Tesco to get some milk, I found I was dragging my feet. Like seriously dragging my feet. I dismissed it as just me being tired. I went home, and went to bed. I figured that having a good night’s sleep would help.

I slept well and woke up a little late, but that was fine. I felt wobbly moving around the flat getting showered and dressed. My legs felt stiffer than usual but I pushed on.

It seemed to take me forever to get ready. Of course it wasn’t, but it felt like it. However, I didn’t leave until just after 8, so I was expecting to be able to get the 8.16 (is that the time of it?) train. That was not going to happen. As soon as I set off I was dragging my feet.

I tried, I really tried, as I usually do, to walk normally. I try to walk in a controlled way, with normal balance, with normal steps, avoiding trip hazards. I concentrate hard so that if anyone sees me who knows me, then maybe they wouldn’t realise anything was wrong.

Today was not a day for walking normally. Today was a day for feeling a looking like a cripple. I make no apology to those who find that term offensive. It’s how I feel, ok? I was dragging my feet, tripping over every unevenness in the paving (there are a lot, believe me) and finding, to be perfectly honest, that I really really wasn’t sure I was going to make it at all.

It’s strange how when you’re struggling you can still walk along following a familiar path without being actually aware of quite where you are. Does that make any sense? So I was walking along and thought to myself, well at least it’s not too much further, as I continued to scuff the toes of my new shoes against every protruding flagstone edge. And then I realised where I was. Less than halfway to the station, on a slight uphill rise, struggling. I seriously thought about going home, I was that uncertain if I could make it. But then I wasn’t sure I could get home either. I dragged my reluctant legs along the pavement, wondering what the fuck I was going to do if they just packed up.

But I did it, in the end. Because I’d missed my usual trains (both of them) I had to go to Waterloo East. On the plus side it meant I got a seat on the train, and avoided the up down up down stairs at Lewisham, so I guess it wasn’t all bad.

So I got to work and managed to make it to my desk without it being too obvious that I was struggling and dragging my feet. A lot is down to the fact that as much of the distance as Canary Wharf is vertical as well as horizontal, so it can be negotiated by riding the escalators. And the flooring is all smooth and level, which is a definite plus.

So there we are. A long time since I wrote anything here, but then a long time since I had anything much to write. Today is a bad day. A sad day.