I went back to the Breakspear clinic this week, five months after I had last been there. I last wrote about it here.
It has been a rollercoaster five months, with a severe relapse, recovery, and then a certain improvement in my overall health situation. All of the ups and downs of the last few months have been connected to the rebreathing mask that I got from the clinic, and so I was curious to see what the numbers said was happening with my system.
The mask, which I now wear for at least six hours every night in bed, is designed to increase my levels of carbon dioxide (CO2). Oxygen levels are key in energy production and the proper functioning of the autonomic nervous system, but O2 is in turn dependent on a certain amount of CO2 in the system as a buffer or support. In my initial examination I was shown to have low levels of CO2, which meant that when I exerted myself, my oxygen levels dropped instead of rose.
I flew over on Monday to Luton airport, just outside
. I had a follow up appointment with Dr
Shah, who is a neurophysiologist there in Breakspear. He attached sensors to me
which measured different aspects of my central nervous system functioning,
including O2 and CO2. Then he gave me a "challenge", telling me to
inhale and exhale rapidly, six times in a row. London
The last time this is when my oxygen plummeted, when it should have risen. My CO2 levels also fell during my first exam. This time, the same thing happened, though less so. The oxygen fell but less, and the same happened with the CO2, it fell, but recovered more quickly. So the basic story is that my autonomic nervous system is still dysfunctional, just less so.
And in the world of ME/CFS, this is what is counted as a win, progress. Still dysfunctional, just less so. The doctor gave me some advice when I showed him how I was wearing the mask. He told me that I needed to pull the straps that fasten it to my head tighter when wearing it, to maximise the amount of CO2 that is trapped in the mask, and so increase the amount I "rebreathe".
He also said that he had to confer with his colleague, Dr Munro, about what other actions needed to be taken to get my O2 levels up. He suggested that I may need an oxygen concentrator, and also what he called an "endothelial cell repair programme." I'm not sure what this last thing is, but I have to talk to Dr Munro herself in a few weeks to find out.
And that was that. There wasn't really much to the appointment, a confirmation that I was slightly improving, some advice and a promise of future treatment.
One of the more interesting parts of my brief stay in
that I spent that evening in the Breakspear guesthouse. They own a medium sized
house a few miles from the clinic, which they allow visiting patients to stay
in for a reasonable fee. The house has a kitchen and common area. Some of the
people I met there were there for a whole week, others for a month or more. England
Again, like last time that I stayed, I was the only man in the house. This time there was a French lady, three Italian women and a German girl in her twenties. They were all being treated for some form of Multiple Chemical Sensitivity, and one or two for electro sensitivity. Breakspear do a lot with this, allergies, environmental medicine, treating people with unusual reactions to things.
The experience of being with all of these sick people, even for just one evening, was a mixed one for me. It got kind of oppressive, hearing people's stories, being around people who are so intensely conscious of their environment, who are so consumed by their condition.
One lady there had a sensitivity to wifi, and to mobile phone signals, as well as to other things. She had a helper that came in to cook her dinner when I was there as she wasn't able to. However, she did seem able to go around the house with a little device that detected phone and wifi signals, and to go up to anyone she suspected of having a device, and ask them to turn it off. I had a laptop with me, and had connected to a wifi hotspot in my room. She obviously detected this with her little gadget, and threatened to go into my room and switch it off herself if I didn't. She was very insistent, almost threatening.
Another lady had a sensitivity to traffic fumes. Before going to bed she asked all of us to close our windows in our rooms, so as to keep out any trace of fumes from the house. My room was at one extreme of the house, and hers at the other. All doors to all rooms would be closed at night, the rooms only connected by a narrow corridor.
The two reactions to me seemed extreme. It seemed to be symptomatic of the atmosphere of the place, where people were really invested in their illnesses, and delighted in talking about them. The first lady who was sensitive to wifi didn't actually feel any worse when I had my computer connected, she wouldn't have known there was a signal if she didn't have her little gadget. What's more, her room was downstairs, and mine was way up at the end of the corridor upstairs.
And the request of the second lady seemed to me to be unreasonable. As it happened I closed my window anyway, but one of the girls there had other sensitivities and felt better with air circulating, and sometimes liked to have her window open. Besides, the rooms were obviously considerably separated, and the doors were going to be closed all night. The amount of traffic fumes that could reach her there in her room, behind her closed door, was miniscule.
To me this kind of obsessiveness is easily bred in a situation where you have this dysfunction assailing you that you don't really understand, and which you have no control over. The requests for no mobile phones or wifi, and for people to close their windows, were clearly (possibly exaggerated) attempts to get some feeling of control over their surroundings for these women.
I should be more understanding of these motivations, having been through what I have been through for sixteen years. I once thought that mobile phone signals and wifi made me feel worse, though I now suspect that this may have been a mistaken belief bred by the terrible insecurity inherent in an illness that I couldn't control. I have recently got wifi into my own home here, after having used mobile internet before that, and feel no change at all in my state of health.
I have no doubt that those people I briefly shared living quarters with in Breakspear were genuinely ill, and did have sensitivities that were not easily explainable. Most of them reported having been told that they were "pazzo", Italian for "crazy", at one stage or another, another thing that many with ME/CFS can relate to.
One lady, the one who asked us to close our windows, told me that she basically lives in her car, as she cannot generally stand the environment of her home, full as it is with chemicals and electrical currents.
These are all people who are suffering. And this suffering can cause a certain obsession with your state of health, something I have experienced too. This obsession itself can become unhealthy, though, and cause you to act in ways that alienate people and leave you even more isolated. One thing I did notice was that most of the patients there talked at length about their own condition, but showed little interest in my own particular situation, and asked me few questions about my experience.
I was glad to get out of the Breakspear guesthouse, the atmosphere had become a little oppressive. It confirmed, if nothing else, my own personal approach to the condition, - which I am fortunate enough to be well enough to carry out - which is to only talk about it to people I know well, and who already know a little of what I have been through.
The fact is that sick people who are consumed by their illness and can talk about nothing else, are tiring and alienating to talk to. Illness, if we are not careful, can make us self-obsessed and tedious. I have been one of those people in my time, and am thankful that I have, for now at least, reached a stage where my life is not so overwhelmingly effected that I can't think or talk about anything else.
Others are not so fortunate, and it is difficult for them to know how to approach the whole question of what to say to whom and when. Being that ill is heart-breaking, having your life ruined by illness is hard to take, especially when no-one can tell you why it is happening.
It is difficult to achieve that perfect balance between not talking at all about your ailments, and becoming obsessive about them. The problem is that, if you're not crazy before becoming ill with conditions like MCS or ME, having to live with them can easily take a toll on your sanity.