Thursday, November 7, 2013


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. 


  1. Lol at your mask pic. The other day my mum cleaned mine and this plastic ring fell out without her knowing & the whole front fell off!! I had to ring Dr Shah, then I found it in my bed...oops. It seems weird one small plastic ring holds that front bit on.

    1. I wasn't aware of the ring on the mask actually, though just looking at it now I kind of see what you mean. Though on mine at least it doesn't look like something that can fall out. At least I hope not!
      How are you getting on with it? I think you said that it was causing you anxiety, I wonder has that improved? I find I can now sleep in it, on my side, and it has better effects when mostly used at night. I am beginning to possibly feel some benefit from it, though it is still early days yet and I'm not entirely sure. Still, it's worth persevering with.

  2. Yeah it is like a small 'washer'. I don't think it is meant to fall out but my mum wiped around the white ring. I probably got a faulty one, I seem to be unlucky but I shouldn't think like that as it apparently attracts more bad things into your life. I guess my life is good in a lot of ways.
    You do really well sleeping in it! There is no way I can. Do you suffer with sleep problems like insomnia? I do, but I take A/D to sleep. I still get panicked yes and I get really hot so it feels like there is no air ( I guess there isn't much lol). My skin has gone really clear since wearing it though. See, I am trying to find positives :-)

    1. Interesting about your skin, I wonder if it is the mask. It would be good if it were having some positive effect. It't good that you can look on the bright side!

      My sleep is ok now, in fact since I started using the mask I sleep really heavily, it makes me a little sleepy when using it, which is why it isn't too uncomfortable at night. I use it for half the night usually, and it is a relief to take it off in the middle of the night.

  3. This post made me chuckle, the things we do to try and get a little better definitely can be quite odd! Your neighbours must either think that you are a little crazy, or one kinky human being! I worry someone might walk in whilst I´m trying out bed yoga poses or (a non medical thing) whilst I´m sat with a plastic bag on my head - great for keeping hair healthy! Luckily for me I´m not overlooked, it would just be my family wondering what on earth I am doing.
    Glad you are feeling improvements since the relapse, if the scary mask helps keep at it and screw what you might look like through the window!

    1. A plastic bag on your head!? That's a new one on me :-) To be honest, I was thinking about this after writing the post, and we probably all - ill and healthy - get up to things in the privacy of our own homes and rooms that might look strange if seen from the outside, plastic bags, yoga poses, masks.

    2. He he Hayley! I think girls have some strange beauty tips. Yesterday I had an avocado and manuka honey face mask on which looked rather scary and my dog kept licking it off. I even read about a girl putting olive oil in her belly button for dry lips....honestly not me