Saturday, December 14, 2013


So it seems that I have made some progress. This is not something that I really know how to work with, to be honest, as it is such a rare occurrence, in my sixteen years of illness, but it does seem to be happening.

I have written ad nauseum in this blog about my rebreathing mask, and the extra carbon dioxide that it provides. Posts can be found here and here on this subject. Briefly, a doctor in Breakspear Clinic in the UK measured the state of my autonomic nervous system, and discovered that I have reduced levels of carbon dioxide (CO2) in my system.

CO2 and oxygen are both necessary for certain processes in the body, and they must exist in a correct balance, or else things go awry. I am simplifying here, but that's the gist. To correct this imbalance, I wear a mask every night in bed that traps the CO2 that I breathe out, thus allowing me to "rebreathe" this carbon dioxide and so boosting its level in my system.

To be honest, when I started, I didn't believe for a second that it was going to help. This was not because I had any particular medical knowledge that helped me form that opinion, it was simply because I am used to treatments and medications and approaches not working. I have tried a good range of treatments over my sixteen years with ME/CFS, and almost nothing has worked. I have kept going, but without much belief.

And so at first, back in August, I used it for a week, and stopped when I got a stomach bug, intending to start up again. Then I had a bad crash, which in retrospect was almost totally down to abruptly stopping using the mask. Once I started with it again, I picked up, and eventually got back to my usual self.

And just in the last two or three weeks there are even signs that I may be making some overall progress. I have experienced a surprising increase in stamina, I don't get as exhausted by doing simple tasks as I used to, I have been able to work more, feel more resilient.

In truth, though, I am uncomfortable talking about this. Partly this is superstitious, a fear of jinxing something that I have waited so long for. Talk about it too much and it will go away. I have had false dawns before, and it is unimaginably painful when it turns out that the improvement you thought you were making turns out to be an illusion.

Also, I am not sure how to react to the slight increase in energy and functionality that I am experiencing. The issue is that I have built my whole life around having to manage and save energy, every part of my existence has been controlled by my condition, practically every decision I have made in the last decade and a half, major and minor, has been influenced by the knowledge that I am operating at a reduced level compared to most people.

I have the mindset of someone who constantly has to take care. And though this has not changed overnight, it is less true. So it is an ongoing process for me to adapt to the increased possibilities that feeling better allows. Things that I have trained myself to not even think about, like having a relationship, getting a real job, living on my own, now come into view.

So what kind of improvement am I talking about? It is somewhere between 5% and 10%. This may not sound much, but it is more significant than it appears. One area that is certainly helped is my orthostatic intolerance, which is the problem many people with ME have of remaining standing, or even upright, for any length of time. This is still an issue for me, but it is measurably improved on what it was.

I can now be somewhat active for a morning and an afternoon - teaching or shopping or visiting friends or family - and still be able to consider doing something in the evening.

Just today I was out this morning running errands, had a nap, and then was going pretty much from 12.30 to 6.30, driving an hour down the country to meet friends for lunch, driving back, visiting someone in hospital. All without a rest or break. And now I am writing my blog, and preparing clothes for a trip that I am planning next week. I may have been able to do all of this before, but with much more difficulty and grief and exhaustion.

In sum I suppose I now feel, at least part of the time, the way most people feel all of the time. It seems like I am approaching that most mundane - but most elusive - of goals, "normality". I am not there yet, but I can at least see the outskirts of Normal City. The whole experience is so surprising, and different from what I am used to, that I don't know quite how to react.

The other point is that it is so long since I felt healthy and normal - a decade and a half, in fact - that I am not sure I would even recognise health and normality if I reached it. I am also in my early forties now, compared to the person in his mid-twenties who first entered this horrible labyrinth, so I assume entering early middle age will naturally reduce energy levels anyway.

There may be more improvement to come. I was told to use the mask for at least four hours a day, though six if possible, and I am now up to five hours nightly. I find if I increase the duration too quickly it makes me more tired, so it has to be a gradual increase. Still, perhaps when I get up to six hours, or more, I will feel even more benefit. My head is spinning at the thought.

The last four months have been a rollercoaster. From the pits of a relapse to the hope of a new me, I don't really know yet how to react. I am going to Spain and Portugal on Monday, for a week, on my own, travelling around. If nothing else, that will illustrate exactly how I am, and what I can now manage.

Though old habits of thought die hard. For now, one of my main priorities is simply to ensure that I don't get any worse. It has happened before that I have had my worst relapses just at the times when I was feeling the best. First protect the gains, and don't slip back. Then figure out what it all means, and what new possibilities are opened up to me, if any.

I just hope that I don't wake up one morning and realise that all that improvement that I thought I had made has just disappeared. After sixteen years of grief and disappointment and loss, it is hard to really believe in a genuine upturn, a real positive change. It is going to take time to know what this all really means.


  1. It is great news! I would say you need to balance not using up all your new energy straight away (ie build up slowly), with not being fearful about relapsing. Try to cultivate a feeling of trust in your body and the treatment. If you do go overboard and get a bit worse, don't stress about it and give up because it is usually just because its easy to get a bit over excited. It would only mean resting a bit more couple of days/weeks, but if you panic it turns it into months. That is what OHC taught me, hope makes sense

    1. Thanks for that, yes it makes sense. To be honest the improvement is not huge, but it is enough that I notice it, and it's going to take a bit of time to adapt. As long as I hold on to it, of course!
      BTW, what's OHC?

  2. Sorry I thought I mentioned it to you when I was 'Crumpet' on here. It is a clinic called The Optimum Health Clinic. They do psychology of ME, I really think it could help you from your last post. I don't think I would be improving as much without them. I think it is

    1. Thanks for that, I'll give them a look. Glad to hear your recovery is keeping up.

  3. Glad to hear you've been feeling better! Can I ask where you got your rebreathing mask? was it from breakspear? Interestingly I saw this article just before reading your blog !

    1. That interview is interesting, Daniel, thanks for the link. I have been in touch with Dr Newton myself about trying HOT, and I do think that the autonomic nervous system is key in my condition. I have written about it in my last post before this one.
      And yes, I got the mask from Breakspear. This was only after a ANS test which I have described in other posts. It cost £200, so not cheap, but at the moment it is proving to be worth every penny. I think this balance between O2 and CO2 could be central to a lot of people if they could investigate it.

  4. Now that it's 5 years later, are you still using the rebreathing mask??? --Steve

    1. Hello Steve. Yes, five years later and still using the mask. I stopped for a month or two, just to see if I could, and went downhill pretty fast.

      So I am still using it and have got back to a semi-normal life - I am working full-time and living a busy life. Fingers crossed!