A MASK, A SAUNA, AND OTHER CFS PARAPHERNALIA

I often wonder what someone looking in the window of my bedroom would think if they watched for any length of time. And no, that's not some kind of kinky invitation to voyeurs, I'm talking more about the various treatments for my CFS that I have tried, and that may look a little unusual if seen from outside.

When I am at home, I spend most of my time in my room. The house I live in is in a housing estate with different streets backing on to one another and so, even though my room is at the back of the house, it is still facing the backs of other houses. The other houses are all in a row so there are probably four or five houses where their occupants could potentially see through my window and into the room, if the curtains are open.

In truth, even the windows nearest to me are about forty metres away, so for a good view a person would need binoculars or really good eyesight. Still, with the light on, at night, with the curtains open, a good view could be had of the goings on in my room.

I really like the orientation of my room, facing, as it does, to the south. If there is any sun at all it will come directly in through my window, and because the house is well insulated, the room will stay warm most of the day, even in November. I also really need brightness and sunlight, and really hate these short dark days of winter, so I tend to keep the curtains open as late as possible.

Anyway, I'm sure that there isn't anyone looking in, but if they did, they would see some unusual things. Last year I had treatment with the Perrin technique, and that involved a lot of self-massage. I had to put olive oil on my chest, neck and back, and massage the skin upwards towards the collar bone.

The trickiest part of course, was doing the back. On the Perrin website they actually sell implements for massaging the back, but I decided to improvise, and rigged up a large flat duster that had a handle, elastic-banded a smooth plastic bag to it and turned it into a back massager. I could reach right down to the base of my back with it, and sweep upwards towards the neck.

Usually when doing it I closed the curtains, but I had to do it three times a day, and so couldn't always be bothered. I can imagine that from outside it must have looked like some kind of bizarre ritual of self-punishment, flagellation with a red duster, maybe something kinky!

Then, three months ago I bought a Far Infra Red sauna. There were a number available, but I got the cocoon model, which is basically something that looks like a flat, sliver sleeping bag that you attach to an electrical control box. I am in here every second day now, all wrapped up in my alien-looking cocoon, with wires coming out of it, looking - to anyone who happened to have a handy telescope at their back window - for all the world like some kind of Frankenstein contraption, or an extra-terrestrial examination chamber!

And then there is The Mask. I have written about The Mask (the name itself suggesting some kind of horror movie) before, here. I was given it by the Breakspear clinic, and told to wear it for four hours a day, as a way of getting the levels of carbon dioxide in my blood up.

 

So now I mainly wear it in bed, but occasionally I have worn it during the day. It looks like something that the guys in Breaking Bad wear when cooking crystal meth, or like a gas mask they might have worn in London during the Blitz.

Once or twice I have had to go to the bathroom while wearing it, and couldn't be bothered to take it off, and so have ventured out to the landing and the bathroom, hoping not to bump into one of my housemates, and then have to explain everything. Once I even had to get up at night to go to the toilet, with the mask on and, though I didn't see anyone, I could only imagine the reaction of one of the people I live with if they had bumped into me coming out of my bedroom, looking like Walter White coming from his meth lab.

On many occasions I would have been visible for anyone across the gardens and in one of the upstairs rooms in the houses that back on to ours. It does make me smile to think of someone looking in and seeing me sitting in my armchair, breathing like Darth Vader through this big hunk of plastic, and wondering what the hell I was doing.

In general things have settled down a little, after my severe relapse, and then slow recovery. The mask, though it helped me to pick up in the worst days of my crash, doesn't seem to be helping much now. I am persevering, and hoping for the best.

I have stabilised though, and am a little closer to my old self, though still about ten percent down on my pre-crash levels. I have found that using the mask a lot during the day makes me sleepy, and so I am concentrating on using it more at night in bed. All of the measures that I mentioned above: the Perrin technique last year; the far infra-red sauna; the rebreathing mask; all of the money and effort and time that I have poured into these attempts at recovery, have resulted, so far, in precisely nothing. Zero, zilch, no progress at all. In fact, if anything, I am a little worse than I was twelve or eighteen months ago. It is necessary to keep going, but sometimes it really does feel like bashing your head against a brick wall. 

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.