RELAPSE 3: SURVIVING

In his book The Selfish Gene, Richard Dawkins described living organisms as "survival machines". We are, his point was, basically machines whose function it is to procreate and get our genes into the next generation, thus insuring their survival. We are hosts for our genes, and they make us act in a way that makes sure they go on living.

That's pretty much how I feel, like a 'survival machine'. My goal, at the moment, is to survive, and little else. After a long time striving to get better, my objective now is to insure that I don't get any worse. My life is about getting through the days, and getting out the other side unscathed.

It is now eight weeks since I crashed, and it's been a bit of a rollercoaster. The first few weeks were hell, I stabilised a bit, and then started using my rebreathing mask, and began a recovery of sorts. I improved quite quickly over the space of a week, but now I have stalled, and am not, for the moment, getting any better.

The rebreathing mask, as I wrote about in the last post, was prescribed to me by the Breakspear clinic. I have low levels of carbon dioxide in the blood, and the mask is supposed to raise those levels. This happens because when I breathe out while wearing the mask, the mask traps the CO2, and then I 'rebreathe' this CO2 in again, thus bringing my carbon dioxide up to normal levels.

I was using it for a week before my crash. I stopped using it when I got a stomach bug, intending to start again when better, then crashed, and didn't go back to it for a month. When I did, I immediately felt better.

Yet this improvement has now stopped. I have stalled at about ten or fifteen percent less energy than pre-crash days. I was already pretty limited, now my limitations have been exacerbated.

Everything is just that little bit more of an effort, that little bit more difficult. I'm dragging myself around with extra struggle, as if someone had added a couple of kilos to this phantom backpack that I feel like I am carrying around. Standing and cooking dinner takes more out of me, I have now to sit down in the shower, I haven't been out of my home town since it happened, I have seen two of my friends, on two separate occasions, for half an hour each, in seven weeks, and hardly any of my family. Every day is just that ten or twenty percent more of a battle than it was just two months ago.

I have gone back to work, but at a reduced level. I taught two hours last week, and will do four this week. I anticipate maybe getting up to seven or eight a week, compared to twelve to fourteen hours a week pre-crash. I am still lucky enough to be able to work - I know many PWME do not have that ability - but everything will have to be reduced, for now.

Because of this, financial survival is now another necessary objective. I was never comfortable financially, but did manage to save a little to pay for treatment, but now it will be about being able to make rent and pay the bills every month, and little else. I am going to have to cut back on simple things, like going to the cinema, or buying that extra piece of expensive sheep's cheese.

So basically I work, buy food, rest, sleep, cook, eat.  This will be it for the time being. I spend a lot of time on my own, out of necessity, and do feel quite isolated, though in truth I have no desire at the moment to see anyone. A bit of solitude right now is probably all I can cope with, being with people involves either having to pretend that I am better than I really am, or else explaining why I am not well, and how I am feeling, and neither prospect is appealing.

I am continuing with the rebreathing mask, am sleeping in it for a few hours a night, which is awkward but doable, and am using it for a total of about four hours. Breakspear advised me to try it for at least eight weeks, so I'll keep going and see what happens. I have also started using my FIR sauna again, and am up to 40 degrees, and will continue to increase the temperature. No progress from anything yet, though hope springs eternal.

I continue taking the anti-depressants, which help keep me on an even keel and smooth out the bad times. Without them I would surely be a mess, so I am grateful for the balance that they provide. I find that they allow me to take things as they come a little more, to just accept what has happened and to try to deal with it, without melting down into self-recrimination, despair and regret.

It is a period of adjustment, and will take me a few months to work out exactly what I can and cannot do. Right now I am being cautious, and trying to take care. Right now I am thinking of little else but survival.