Thursday, January 9, 2014

BREAKSPEAR 5: CHECKUP, AND THE DANGERS OF SELF OBSESSION

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 London. 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.

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 England was 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.

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.

16 comments:

  1. Thank you for your very thoughtful comments and clear insights. - Tony

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    1. You're welcome, Tony, and thanks for your comment.

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  2. Glad you are making improvements. To be fair, I think having MCS (I have ME but only very mild reactions to perfumes etc) must be very isolating and also force the person to focus on controlling their environment more than they I'm sure they would

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  3. > like to not have to be so vigilant. Perhaps past exposures have caused long lasting crashes so I can understand why they are very careful

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    1. Hi Prue, thanks for your comment. Yes, I can understand to a certain extent why they are so careful, but I have no doubt that some of their reactions are over the top, and that the uncertainty that their illness causes makes people hyper vigilant, at times too much so. From my own experience I know that constantly thinking and worrying about something is very unhealthy.

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  5. Hi, glad u had good trip away. I think Breakspear go a bit overboard sometimes and can encourage obsession, like with diet, allergies and chemicals. I don't know much about the WiFi thing, are there any studies to prove intolerance exists? I think I'm going to get a bad reaction in reply to this comment. Sometimes fear of a thing that makes ppl ill can trigger symptoms in my opinion, then ppl think it is the thing. Like if you notice WiFi you would panic and panic can cause symptoms. You are right that Breakspear are a business first and foremost.

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    1. Hi Chloe, I agree, TBH. I have no doubt that these people do have sensitivities, but the constant vigilance and worry about being exposed to even a minute amount of a contaminant is not healthy and can, as you say, even induce symptoms. I'm not sure if it's down to Breakspear itself, you might be right, maybe they make this worst.
      As for sensitivity to wifi, I can't say whether people can have sensitivities to it, but I know that the studies show that it doesn't effect people in general. Perhaps some rare people are sensitive, but in large scale studies there is no effect.
      Hope you are doing ok, have you been back to B'spear? I wonder if your improvement has continued?

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  6. Yeah, maybe is not just breakspear, but I sometimes feel that the things they find wrong with me would never ending, hence me saying they are more a business. I am not sure if I am going back yet. I did have some improvement, but back to where I was now unfortunately. I think I have been too trusting of everything they have said to me and done every thing they suggested in desperation. They gave me some bad advice and developed a stomach ulcer. I think healthy discernment like you seem to have is wise! I don't want to put you off though, as they do have a lot of strengths there and can help people. I really hope they can help you :-)

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    1. I'm sorry to hear that you have had a setback, that's depressing. Do you know why you lost the ground that you had made up?
      Breakspear are a business, that's for sure, and you do have to really think about all the things that they recommend for you. If I had done all of the treatments they had suggested, it would have cost me at least £3000, and that was just for starters. And the chances are that they may not even have helped. You really have to do your homework, take your time, not be rushed into trying all of these options. It's not easy, especially as there is limited info out there. It's one of the main reasons I started the blog, to help myself, and other people, in deciding what treatment options to take.
      Anyway, they can and do help people, but you have to be careful, and have to have deep pockets.
      Sorry to hear about he ulcer, that's nasty? Where did that come from? I wonder are you still wearing the mask?

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  7. Yup you are right, I have been desperate, so tried everything they said. The setback came because breakspear advised me to come off my stomach medication (for gastritis) and take around 60 supplements a day. I got the ulcer as was too much without the meds to protect it and was in and out of hospital all over Christmas. I also have recurrent glandular fever though and got a throat infection at the same time. Plus my 5 yr relationship to my fiance has ended! Just too much in one go. I am not wearing mask or doing anything atm, need to get my emotions sorted first and heal my stomach, then decide what to do next. I need a break from trying so hard to get well. Thanks for your message :-) good luck! I am writing a new blog, if you are interested in reading I'll send u link. About being happy whilst unwell. Take care!

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    1. Wow, that is a lot to go through at once. Still, once things settle down, and you get control of the ulcer, you can begin to try to heal again, bit by bit. It is very difficult to be patient with ME, I know this, but I have found that it is more effective to try one thing at a time, and if you are starting any new treatment, to go very slow with it initially, and build up gradually. It takes a long time, but at least you have a better idea what is helping and what is making you worse.
      It sounded like the mask was helping you a bit when you did use it, maybe when you are feeling more in control you could go back to it. Hopefully it is just a blip.
      Good news about the blog, I'd be interested to read it. Please do send me a link.

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  8. I'm glad you had an improvement in your situation. I couldn't help but feel sorry for the people you spoke of in Breakspear, however.

    You said that their reaction was 'over the top' - how do you know? I don't have MCS but I do know that some people view me as very unreasonable for insisting on sitting down instead of standing, and insisting that they stop talking to me if I can feel a brain fog moment coming on. They may reason that I look fine at that moment - they don't see the effects two days later.

    Likewise, you don't see the effects of those traffic fumes on that person two days, two months later. Those who are on the more severe end of ME will do pretty much anything to avoid a crash - and for good reason. People die of ME. This is serious.

    It may be that they are hyper-worried, unnecessarily, by their illness, or it may be that they are reacting entirely reasonably, given the severity of their condition. I am very wary of judging other ME sufferers. Most people looking from the outside don't understand the extent of my illness. We need to be careful of making assumptions about others.

    For my part, I would rather keep the window closed and do without wifi for one night, if it had even the smallest risk of making someone else worse. I may reason that it probably wouldn't make them worse, but I could never know for sure.

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  9. I too have been to breakspear twice and my impression was that they are very obsessive about allergies causing most of our problems. They did help me in that Dr Shah's assistant diagnosed me with very low oxygen in my cells and Dr Munro said I should buy an oxygen concentrator and use it 3 times daily. That was nearly two years ago and it has so helped me.

    BTW I have recently bought a portable one from Ebay that only cost £310 and yet it provides 5 litres a minute which is fine for me so it really isn't that expensive.

    One thing that struck me is that a lot of these people with MCS probably have knackered adrenals and if only they were treated they would find their MCS disappeared. That is definitely my experience, now I just respond negatively to things like MSG or cocoa and alcohol but these are chemical reactions that cause severe migraines. All other types of allergies have gone but I do have to take a replacement dose of steroid daily. I don't believe Breakspear treat the adrenals very well, hence they can put their patients on all sort of expensive and money-making (for them) treatments.

    I would definitely recommend an oxygen concentrator for anyone who has been ill for some time with ME/CFS.

    Pam

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  10. Further to my comment earlier on the year, I came upon this heartbreaking video of a young woman with severe me/CFS/Lyme and MCS. The video shows what happens to her when she has a momentary exposure to a

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    1. To continue from above..... Fragrance. With such an extreme reaction I can understand why people with MCS are so careful to avoid exposure which to us who don't have it might seem obsessive but in reality is painfully necessary. If you are able, please do watch the short video http://youtu.be/gPbb8DZdY7M

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