I'm sick at the moment with a chest bug. This is a pain, because it means I can do less, which hampers my recovery, and I feel crappy. It also illuminates for me something I have grown to suspect about stroke in general, or maybe just my stroke in particular.

A lot of people, from sufferers of stroke, to stroke doctors, nurses and physios have warned of the great tiredness that can come with stroke. Now, there's no doubt that in the first months of my recovery I tired very easily; anyone who came to Mt. Sinai and found me asleep in the middle of the day can attest to that. But I don't think that tiredness itself is symptomatic of the post-stroke experience.

Instead, I think that we sufferers of stroke are told that we'll get tired, we experience that overwhelming tiredness in the early days of recovery, and we then practice being tired. Our brains learn that being tired is an acceptable way to be, and it's pretty cool, because other people take care of stuff while we're snoozing. Being tired as a symptom of stroke is, in this case, pretty awesome, because most of the time "he had a stroke" is an adequate STFU to any question.

I'm left wondering, though, what's the biological cause of the tiredness? I mean, sure, when we're first recovering our brains take frequent times out to create new pathways, but six months later? Why would I be extra tired? The short answer is, "I'm not," but maybe that's peculiar to me, and there really is some reason why everyone else gets tired and sleeps more.

What I have found is that stroke is a sort of magnifier, but again that's not quite right. My response to emotional stimuli, for example, seems magnified, even in as trivial a case as really enjoying The Avengers movie. But that's more to do with the fact that my physical response is less muted, so my emotional response feels disproportionate for an adult. I'm actually pretty content with saying "adult with brain damage here" and enjoying a lot more bang for my exorbitant movie buck. Or at least, I shan't be working overly hard to recover from that particular change; I'm content adapting to it.

Ultimately, my experience is that I have little to no reserves. When I get tired, that's it, I'm done. This makes sense when you accept that I lost a few c.c.s of highly optimized motor control brain matter, and now the rest of my brain is having to pick up the slack. Unfamiliar parts of my brain are working to learn how to interpret signals and send meaningful responses to the bits of me that have been walking, seeing with binocular vision and being a face for forty odd years. My brain is still at it, it hasn't even finished just figuring that stuff out yet, let alone started to optimize it so that there's some left over capacity for me to draw on.

If this seems incomprehensible or far-fetched, let me put it to you that I now have a visceral understanding of why a child who's just become a toddler will rocket around, then keel over and fall asleep. Just the act of walking right as well as getting where I want to go can be exhausting. Or it was, it's getting easier with every passing day, because I'm working hard at the exercise I do.

Which brings me back to being sick, which is annoying because, although it's exactly the same as when you get sick, it seems to affect me more, because unlike you, I don't have anything to draw on in reserve. Of course you could just as easily have depleted your reserves burning the candle at both ends, but for me it means that I shan't get up tomorrow morning to go see the Queen toddle around Sherborne and I'll be asleep in about 20 minutes' time.

Gym, swim and nap

Exercise after a stroke is a funny thing. Initially it's unbelievably tiring, quite literally: I found it very hard to believe how much a short walk would exhaust me, and often needed a nap shortly afterwards. Even in rehab (in Hackney), it turned out to be easy to do more than I was ready for or indeed capable of doing. This resulted in a period of exhaustion that provoked depression, which made it hard to do anything. Less than ideal.

Since then I've been more cautious, but I'm getting less and less so. At the moment I'm finding that the more I do, the more capable I become. Which is why it's even feasible that I've been to the gym four times and had a half hour exercise in the pool after each. This week, I'll comfortably meet the recommended minimum for getting fit (at least 30 minutes, 5 times a week, a little warm, a little sweaty throughout), and I'm no longer so concerned that I'll be a total wreck a day later.

Apart from the general goal of improving my cardiovascular fitness (and substantially reducing the chance of death), one of the challenges is making sure that my right side is doing at least its share of the work. This sometimes means using less weight than I can manage, because too much makes it too hard to get my left side to let the right do the work. It sometimes means painstaking adherence to form, as well: When walking on a treadmill, avoiding a limp; when in the pool rigorous symmetry in my breast stroke. 

For now, it always means that my right side has worked harder than my left, and aches because of it. And because the whole of my right side below the neck is weaker, it often aches in unusual and uncomfortable places. At some point, I'll be able to exercise hard enough that I ache evenly, but I expect it to be quite a while.

One of the oddest things I've found, though, is that my memory of myself in hospital three months ago doesn't include anything like the experience I now have of my hand's relative weakness; nor does my memory of being in rehab. I must have been compensating so thoroughly with my left hand and so far in denial about it, that I couldn't even see it. Just another weird experience from the land of brain events.

It's three months today since I had my 'brain events' (which sounds a bit like something involving horses). At this point therapy proceeds apace. I'm comfortably ensconced in Dorset, able to do a tiny bit more each day, attending a gym/support group for post-stroke weekly, starting to go to the same gym more often, planning to start swimming; my speech is improving, my vision shows signs of change which I'm taking as a positive. And so on. Slowly I get better; cruelly slowly.

There are two things that are a challenge and seem common amongst the other stroke recipients I've talked to a bit. First is the tiredness; it comes so easily, it stay and it afflicts. It's also holistic. My doctors have said that the brain recovers holistically: doing the cryptic can help balance over the long haul (and for those who have had a significant stroke there is only the long haul).

Similarly with tiredness: I went to the hospital gym for about an hour yesterday and could barely hold a conversation afterwards. Conversely anything involving mental work or stress is totally exhausting. Even looking at disability benefits forms is enough to reduce my ability to walk, or my facility at damping the emotional responses that get in the way of civilised behaviour.

This seem hard for people to understand or remember; I found it easy to remember, because I was living it, but it took me a while to understand well enough to stop being puzzled, The muscles on my right side are very weak, not because of atrophy and wasting, but because the parts of the brain that controlled the musculature on that side are dead: the muscles operate at reduced efficacy. As I use them, I recruit more living nerve tissue to control the muscle and recover strength and utility. This is a slow process, but a neurological one. I can't expect them to recover as fast, or even in the same way as the last time my legs were weakened by bed rest.

The second challenge is almost more debilitating. Everything is harder now, Everything. I have yet to find any single thing I did before my strokes that is not slower, clumsier, and harder than it was. Many things are simply beyond me right now, but of those that I have recovered or I'm in the process of regaining, not one is unaffected. There is nothing I think of doing with ease. 

This will change, I know, as I recover more physical ability and become more accustomed to my new 'normal.,' but for now it is vexing me sorely. When I recall the monumental effort it took to make some of the posts from Mt. Sinai, I'm delighted at the relative facility I have. But daily life outside the strangeness of a therapeutic environment reminds me that I can't just fire off an email nor rattle off a G+ post, reading is hard on the eyes and on the hand holding the book, eating takes work, if I'm distracted while turning I fall over.

As a result I know have to fight a strange inertia: I dislike each fresh discovery of disability. While I'm conscious that everything is an opportunity for therapy and rehabilitation, I've become reluctant to do things that I did routinely at the start of October, and I despise having to explain the particular difficulty I had with an ostensibly simple task.

So if I'm slow(er) to respond, quiet(er) on Google+ and generally a bit more reclusive, forgive me while I retire to a cave to lick my wounds and hibernate. It won't last forever. Meanwhile, it's a gorgeous sunny day, and I should go for a walk. Excuse me while I rustle up an escort.