Tuesday, August 20, 2013


I've been attending this clinic just outside London for a few months now. I have written about it three times here, here and here. This is the latest update in my testing and treatment programme.

The first time that I attended the clinic, back in July, I had what they call an Autonomic Baseline test, that measures all the different aspects of the functioning of the autonomic nervous system, blood pressure, breathing, heart rate, blood gases etc. I got the results back a week or so later.

There were a number of findings. My supine (lying down) heart rate was normal, as was my level of oxygen (O2). My blood pressure was low but I knew that anyway.

The most significant results involved when the doctor doing the test - Dr Shah - gave me a challenge, i.e. he asked me to breathe deeply in and out six times. I felt quite light headed while I did this, and this was explained by the fact that my oxygen levels actually fell sharply during this period of deep breathing. What is supposed to happen in healthy individuals is that during exertion oxygen levels are supposed to rise. My response was the exact opposite of what would be ideal.

The carbon dioxide (CO2) result was also interesting. My baseline supine level of CO2 is below normal, at 37 mmHg (not sure what this stands for). Normal level is between 39 and 44. However, during exertion, the levels again fell sharply, and took a long long time to come back up again, in fact during the test they didn't even reach the already inadequate level of 37 but limped up to about 33.

I think the link between lack of oxygen and CFS had long been known about, but the CO2 connection is not as well established. I went back to Breakspear last week to have a breathing mask fitted and, as I thought, to get an oxygen concentrator to help with my blood gases.

Instead, I went through the autonomic test again, just to confirm my results, and Dr Shah gave me the breathing mask with no oxygen concentrator. This mask is simply a mask, like in the picture above, that covers most of my face, with a tube attached but which is not connected to anything the other end. He put it on me and then pointed to the dials on the computer measuring my CO2. My carbon dioxide levels had risen to 40, then 41, then 42 since I had been wearing the mask.

The idea is that when I breathe out I, like everyone, expel carbon dioxide, which gets trapped in the mask. In turn when breathing in I take in some of this expelled CO2, so increasing the levels in my blood. It is called a "rebreathing mask" for this reason. According to Dr Shah, the idea is that we work on normalising my CO2 levels, and then possibly move on to working with O2.

I am supposed to wear the mask for at least four hours a day. I have been using it for a few days now, though have found that to get to the four hours I have to wear it in bed. If I wear it during the day I am fairly incapacitated, it covers my eyes and I can't wear the glasses that I need to actually see anything, so all I can do is listen to the radio or sleep. Wearing it in bed is not ideal either, it is bulky and slightly uncomfortable to wear while lying down, but it is my only real option.

I will be re-evaluated in six to eight weeks. I haven't noticed any difference yet, but it is early days. Dr Shah mentioned that in wearing the mask and getting my body used to higher levels of CO2, my body supposedly learns that it needs more carbon dioxide and regulates itself to achieve the levels necessary.

I have no idea if this is a realistic goal or not, or if it is likely to work. I get the impression that they in Breakspear are in the early days of investigating treatments for this, and a lot of the treatments are trial and error. I have no choice but to trust that they know what they are talking about and to give it a go.

On a slightly different note, I spent one night in Hemel Hempstead, where Breakspear is, and I stayed in Breakspear's own guest house, which they run for their patients. It is quite reasonable price-wise, in fact cheaper than the poky, run down guest house that I stayed in the previous time I was in Hemel. The place has a kitchen of its own and a large garden out the back.

While I was there there were five Italian ladies staying at the same time, all of whom were having treatment in Breakspear. They didn't have much English, but there was an interpreter there with them and also, as I speak Spanish, we were able to communicate to a certain extent.

The majority of the women seemed to be there for MCS, Multiple Chemical Sensitivity, which I know some people with ME suffer from too. They were having allergy testing, and were being given vaccines for their sensitivities, using low dose immunotherapy. Some of them, who were getting re-tested, reported having being helped a bit by the vaccines.

Low dose immunotherapy has been recommended for me too, not just for my food sensitivities, but also for my overall health. One thing that came up on the autonomic test was that I have a small level of brain stem activation, or inflammation, which Dr Munro seems to be sure is linked to allergies and sensitivities. I may look into this line of investigation at some stage, but the connection seems to me to be tenuous at best, and kind of hard to take seriously.

What may influence me to investigate the immunotherapy is that I have not been able to tolerate either anti-viral medication that Dr Munro prescribed for me, and so the vaccines may help me to lose my sensitivity to medication. Anyway, first things first. The O2/CO2 conundrum is enough to be going on with for now. I am just about ready to go to bed, with my Darth Vader mask on, and hopefully my CO2 levels coming back slowly to normal.  

Thursday, August 15, 2013


I've been addicted recently to the Netflix TV series Orange is the new Black. It's about a middle-class young woman in the North-east US, Piper Chapman who, because of a past indiscretion involving smuggling drugs, ends up in prison in New York State.

She is from a comfortable background, is engaged to be married, but has to serve a 15 month sentence in a woman's prison. The show is mainly about her struggles to adapt, to fit in to this alien environment, and to come to terms with her lack of freedom and her changed circumstances.

The show is brutal, realistic (I imagine), funny, compelling, and I can't stop watching it. It also got me thinking about something that has occurred to me on more than one occasion before. Having CFS is like being in prison.

In episode 8 of the series, one inmate says to Piper, the main character, "I feel like I'm missing so much." Me too, I felt like saying, me too.

And I think that this is what inmates and PWMEs have most in common, we are both simply trying to survive, while watching the rest of the world moving on.

Like prison, of course, there are different levels of sentence. Some people, like me, are on a day release, they can work in a limited fashion, have some kind of contact with friends, travel to a limited extent, have a limited form of freedom. We have a taste of the world outside without being able to experience it fully.

Others, of course, don't even have that. They are in maximum security, locked down for 23 hours a day, some in a form of solitary confinement, given the exhaustion and difficulty even communicating with friends and family causes. Their days are regimented and strictly limited by their disease, and the outside world begins to seem very far away.

It is about freedom and control. Inmates in prison have lost their freedom, and have little control over their lives. Our jailor is our chronic condition that has deprived us of some of the basic liberties that most people take for granted.

ME is a prison sentence. Our lives are constrained and constricted like prisoners, squeezed until all some of us have left is a form of house arrest, and no known release date. We are tunnelling, most of us, desperately looking for a way out. There is no parole board, no time off for good behaviour. We try to appeal our case, and it goes nowhere.

At least we can watch Netflix. Check out Orange is the new Black if you get a chance. (I should really be getting this blog post sponsored!)

Wednesday, August 7, 2013


I had an encounter recently with my housemate, that sheds a little light on the way I am perceived by people, especially by those who have no idea about my CFS, and the strange in-between world that my condition forces me to live in. I have already written a little about this before here.

A brief word here about my living arrangements. I live in a shared semi-detached house in an estate on the edge of a medium sized town. There are three bedrooms in the house, though only two are now occupied, so I basically share with a woman in her forties from an African country who has been in Ireland about four years. Let's call her K. K was here when I moved in, about eighteen months ago.

K and I had an argument about the electricity bill last week, a common enough occurrence I imagine for people who share a living space and who have communal bills. She has a thing about the immersion water heater, and doesn't like anyone to have it on for longer than fifteen minutes. From my perspective she has a bit of an obsession about this. This is not our first argument about this matter.

Anyhow, I was tired of her constantly blaming me on the odd occasion when the bill is high, and told her so. And then she launched into a tirade. This is not the first time she has let fly with anger and annoyance at something apparently innocuous. But this was something else again. In no particular order, she told me that...

- I am a bad man, and that is why I have no girlfriend.
- everyone in the neighbourhood is laughing at me. I am a teacher and have a job with status, and yet I am living in shared accommodation. Why don't I just get my own place?
- I am selfish and believe that I own the house.
- she cursed me, hoped that I get sick with asthma.

There was other stuff too, stuff about cooking. She doesn't like it when she is cooking in the kitchen and I come in to use the cooker at the same time.

She also mentioned one particular occasion, when she was already using the oven, and I put my food in next to hers. There was plenty of room on the shelf in the oven, so I just put what I was heating up in beside her food. She didn't say anything at the time, but the day of the argument she brought this up, enraged that I would do such a thing. It was selfish, she claimed. The smell of my food would get into hers.

A lot of this was incoherent, and in the form of a rant. As anyone with ME knows, arguments or confrontations can be very stressful and draining. My hands were shaking after about ten minutes of her tirade. I didn't sleep very well that night, and was still a bit shaky by lunchtime the next day.

It was the physical effect of the stress caused by a confrontation that effected me, the actual content of K's diatribe didn't bother me much. I knew that most of it was either nonsense or totally uninformed, and was really more of a reflection of her  unhappiness and frustration with her own life rather than any real valid complaints.

Some of it, looking back later, I actually found funny. Her cursing me is really just risible, and her point about "the food smell" of my dinner going in to hers is laughable. She certainly has an issue around food, uses all her own cutlery and plates and saucepans rather than the communal ones in the house, and never eats a meal anywhere but her bedroom.

Besides, it is difficult to understand how she could reasonably have so much bitterness and anger against someone who she hardly even sees. We really have very little contact, we each keep to ourselves and she rarely comes out of her room. This keeping to her room dates back from before I moved in, so it is not a reaction to my presence.

I did find it interesting though, when she made one particular point over and over again in an attempt to hurt me, which is that the neighbourhood is laughing at me because I am a teacher living in shared accommodation at 42 years old. Now this I know for a fact is nonsense, "the neighbourhood" doesn't care about or think about me in any way, people here get on with their own lives and I play no part in their thoughts.

What I think she is referring to is the family next door, who she has a connection with, through the marriage of a family member of K's. It made me think that they have been discussing me at some stage, and obviously this idea has come up that I am apparently a teacher who is - they assume - earning good money and yet is living in this shared house.

I have never spoken to K about my CFS, and have never explained that I really work basically half a week, and can do no more, and thus can't afford to live on my own, much as I would want to. We have never been friendly enough for me to go into the whole story. So people who I have almost no contact with are making assumptions about me, and I found that strange and curious. I couldn't care in the least what these people - or K herself - think about me, but it felt briefly intrusive that they were obviously discussing my situation without really knowing the first thing about my life.

And then there was the girlfriend comment. K herself is married, though her husband is back in her home country. She has asked me this before, about why I don't have a girlfriend. I was non-committal, and again didn't go into all the complications about trying to meet someone and continue a relationship when your energy levels allow you just about enough leeway to teach a few hours a day and rest for the rest.

I have never explained to her, about the potential difficulty that meeting someone entails, and I wasn't about to go into it during an argument in which she seemed to be trying to hurt me as much as she could. Again though, it shows up the potential for misunderstanding that living with this condition causes, and the enormous gap that exists - in general, I believe, and not just with CFS - between what people assume about each other from appearances, and the truth, which is often hugely more complex and layered than people have imagined.

To her small credit, K apologised the next day. It doesn't change the fact that her motivation was purely to upset me, and to get at me, though it did show that she realised that she had gone too far. Her tirade is not going to change anything substantially in the house, we weren't exactly friends before this, and, as I said, rarely saw each other. It has, however, shown me a nasty side to this woman that I have to share a living space with, which makes me wary of trusting her in any situation in the future.

The incident shows how my ME/CFS effects my life, and how it leaves me in a situation that is unusual and not easily explained, and that other people don't understand. Even if they knew about my condition they wouldn't really get it. Though it really hasn't left any lasting upset, the thing about having CFS is that you nearly always have more to worry about than some housemate's insane ramblings and insults.

It does make me feel a little more vulnerable, however, knowing what K really thinks of me and all the bitterness that she has built up. I live a fairly quiet life, and it is curious to see that some people are intent on commenting on that, and questioning this lifestyle that I have, which has been forced on me by my CFS.