Friday, April 18, 2014


Once I was sure that my recent improvement in health and energy was real, I made two major changes in my life. The first was that I joined a gym and began exercising. After my recent car crash, I have had to put that on hold, I still have aches and pains in various places. I miss it a lot, and hope to get back to it again in the future.

The second thing was that I signed up for is a dating site, you put your profile up on the site and say what kind of person you are looking for, and what kind of person you are. The site then sends you suggestions of people you might be interested in. You can message them, or wait for them to message you.

I have had ME/CFS for over sixteen years now. In that time I have had two short relationships, neither of which went very far, and most of the time I haven't been in any kind of state to be able to meet someone and try to build something.

Before Christmas, though, I felt ready. I felt like seeing what it was like again to meet a woman I was interested in, to get back that excitement and passion and security that a relationship can bring.

I connected with someone on the site quite quickly, and went on a couple of dates. She lived an hour and a quarter's drive away though, so it wasn't very practical, but I was anxious to see where it led, and happy to be back in this world that most people take for granted. So I drove there and back twice. I enjoyed her company, we got on well, I think, though I wasn't sure how much potential there was for starting something between us.

Anyhow, after a couple of weeks it basically fizzled out. I wasn't too upset, to be honest, I was happy just to be back in the world of romance and dating, to be open to a normal human experience that I have been denied for so long.

That was a few months ago, and I haven't met anyone else in that time. I have messaged a few women, who have not replied, and have received a few messages from women that I in turn am not interested in. One problem is that most people on the site are a good drive away, there are not that many single women in my area.

Another issue, I have begun to realise, is that I don't know if I am really ready for a relationship, or if I really want one. The thing is that I have been on my own for so long, I have been managing my health, doing what I can, when I can, that I am not good at compromise. I have a need, like most PWMEs, to have control over my life as much as possible and not have to fit someone else into my world.

Solitude has been a fact of life for me for so long now, I can't remember another way of living. At the moment I am teaching quite a lot, for me, about sixty percent of a full week, and so don't spend a lot of time on my own. I have two, three or four classes a day, and am mixing with people all the time.

Outside of work I have some family that I see from time to time, and one or two friends, but I have developed a rhythm where I do what I want, when I want, when I feel able. I go to the cinema on my own, go to the gym on my own, go shopping on my own, just as I have been doing for years.

The thing about being with people is that they are tiring. Other people are exhausting. Just conversing at times is too much for me, and having to fit in with their demands and desires and habits is a lot to take. And so solitude is a prerequisite for someone with a condition that drains your energy and robs you of control over the basic things of your life.

I am, and have been, on my own so much because I cannot live any other way. Up until two years ago I lived with my parents, but even then I spent a lot of time in my bedroom and not a lot with them. I moved into shared accommodation then, but the other people in the house keep themselves to themselves a lot and so I rarely see them. Moving out of my folks' house was the best thing I have done in a decade, and has improved my quality of life hugely. It has made me a little more solitary, but has given me back more control and independence.

So I actually like my life now. I am about seventy or seventy-five percent recovered, enough to do a lot of things I thought I wouldn't be able to do again, though still in a limited fashion. I don't mind all of the time I spent on my own, I am usually busy, never bored, have been doing this so long now that it is second nature. I may be solitary but I am usually not lonely. Or else it is the case that I have been lonely for so long that I don't notice it anymore. Whatever I am, it is not a state that I find unbearable.

I am going to cancel my membership to this month. I suppose that I don't really believe that I will, at forty-two, meet someone I like enough, and who likes me enough, to make me want to change my life to absorb them into it. A relationship would be a huge upheaval in my life and would involve some major changes, and I don't really know if I am ready for that.

I don't rule out the prospect, but right now it doesn't seem very likely. And, for the moment, I'm fine with that. 


  1. Hi there,
    Congratulations on your continued recovery! I know what you mean about the solitude and needing to limit people time, I'm much the same. Can i ask, do you credit your continued run of relatively good health to the re breathing mask you mentioned you had been using? If so do you know where you can buy one other than getting it through Breakspear? I had a couple of appointments with them last year and wasnt too impressed really and I dont really want to pay the 200 for the autonomic test. If I could get hold of one of these masks without having an appointment it would be great. Just wondering if you knwo anywhere?
    all the best,
    Daniel M

    1. Hi Daniel, thanks for your comment. The improvement is solely down to the mask I have been using. I can't say that I do know of where you could get it, I had a box and a guide that I have lost or thrown out, and so all I know about it is the brand name, which is Respironics. Though I am sure this company makes a number of masks. If I get any more info I'll let you know.
      However, I would be cautious about getting one without getting tested. I know in Breakspear they sometimes give people oxygen supplementation, not CO2. If your CO2 is normal, but you have low oxygen, using the mask might actually make you worse. I know it is expensive, but if you are going to go down this road, I would do it properly and get the autonomic test. What works for me may not work for you.
      Anyway, good luck.

    2. ah yes I see your point. You're right, its probably worth getting tested first!

  2. I'm wondering if you can tell me what exactly the O2/CO2 test was? I'd love to look into it here in Seattle since I've heard from more than one person that the rebreathing mask has helped.

    1. I wrote a little more about it here....
      I attended Breakspear clinic in the UK, they gave me what they call a Baseline Autonomic Index test, which basically tests the various aspects of your autonomic nervous system. So, along with the levels of oxygen and carbon dioxide in your system, they measure heart rate, breathing, blood pressure etc. The important element of the test for me, was when they gave me a "challenge", in other words they asked me to breath deeply and rapidly for a minute. For most people with ME this would cause problems, and it did for me too, I felt light-headed very quickly, even though I was lying down. The readings showed that my CO2 levels had plummeted and were taking a long time to come up again. Hence the rebreathing mask, which increases CO2 levels.
      Breakspear claim that they have developed the test themselves and that it is unique, though I imagine that there are people in the US who do a variety of it. The important thing, I think, is the challenge, it recreates how you feel during exertion, and shows what happens then to your blood gases. My impression is that if you breathe deeply and this causes you light-headedness, that is an indication of a CO2 deficit. There is a summary from Breakspear of the test here....

  3. Thank you very much for the thorough explanation!