A MASK, A SAUNA, AND OTHER CFS PARAPHERNALIA

I often wonder what someone looking in the window of my bedroom would think if they watched for any length of time. And no, that's not some kind of kinky invitation to voyeurs, I'm talking more about the various treatments for my CFS that I have tried, and that may look a little unusual if seen from outside.

When I am at home, I spend most of my time in my room. The house I live in is in a housing estate with different streets backing on to one another and so, even though my room is at the back of the house, it is still facing the backs of other houses. The other houses are all in a row so there are probably four or five houses where their occupants could potentially see through my window and into the room, if the curtains are open.

In truth, even the windows nearest to me are about forty metres away, so for a good view a person would need binoculars or really good eyesight. Still, with the light on, at night, with the curtains open, a good view could be had of the goings on in my room.

I really like the orientation of my room, facing, as it does, to the south. If there is any sun at all it will come directly in through my window, and because the house is well insulated, the room will stay warm most of the day, even in November. I also really need brightness and sunlight, and really hate these short dark days of winter, so I tend to keep the curtains open as late as possible.

Anyway, I'm sure that there isn't anyone looking in, but if they did, they would see some unusual things. Last year I had treatment with the Perrin technique, and that involved a lot of self-massage. I had to put olive oil on my chest, neck and back, and massage the skin upwards towards the collar bone.

The trickiest part of course, was doing the back. On the Perrin website they actually sell implements for massaging the back, but I decided to improvise, and rigged up a large flat duster that had a handle, elastic-banded a smooth plastic bag to it and turned it into a back massager. I could reach right down to the base of my back with it, and sweep upwards towards the neck.

Usually when doing it I closed the curtains, but I had to do it three times a day, and so couldn't always be bothered. I can imagine that from outside it must have looked like some kind of bizarre ritual of self-punishment, flagellation with a red duster, maybe something kinky!

Then, three months ago I bought a Far Infra Red sauna. There were a number available, but I got the cocoon model, which is basically something that looks like a flat, sliver sleeping bag that you attach to an electrical control box. I am in here every second day now, all wrapped up in my alien-looking cocoon, with wires coming out of it, looking - to anyone who happened to have a handy telescope at their back window - for all the world like some kind of Frankenstein contraption, or an extra-terrestrial examination chamber!

And then there is The Mask. I have written about The Mask (the name itself suggesting some kind of horror movie) before, here. I was given it by the Breakspear clinic, and told to wear it for four hours a day, as a way of getting the levels of carbon dioxide in my blood up.

 

So now I mainly wear it in bed, but occasionally I have worn it during the day. It looks like something that the guys in Breaking Bad wear when cooking crystal meth, or like a gas mask they might have worn in London during the Blitz.

Once or twice I have had to go to the bathroom while wearing it, and couldn't be bothered to take it off, and so have ventured out to the landing and the bathroom, hoping not to bump into one of my housemates, and then have to explain everything. Once I even had to get up at night to go to the toilet, with the mask on and, though I didn't see anyone, I could only imagine the reaction of one of the people I live with if they had bumped into me coming out of my bedroom, looking like Walter White coming from his meth lab.

On many occasions I would have been visible for anyone across the gardens and in one of the upstairs rooms in the houses that back on to ours. It does make me smile to think of someone looking in and seeing me sitting in my armchair, breathing like Darth Vader through this big hunk of plastic, and wondering what the hell I was doing.

In general things have settled down a little, after my severe relapse, and then slow recovery. The mask, though it helped me to pick up in the worst days of my crash, doesn't seem to be helping much now. I am persevering, and hoping for the best.

I have stabilised though, and am a little closer to my old self, though still about ten percent down on my pre-crash levels. I have found that using the mask a lot during the day makes me sleepy, and so I am concentrating on using it more at night in bed. All of the measures that I mentioned above: the Perrin technique last year; the far infra-red sauna; the rebreathing mask; all of the money and effort and time that I have poured into these attempts at recovery, have resulted, so far, in precisely nothing. Zero, zilch, no progress at all. In fact, if anything, I am a little worse than I was twelve or eighteen months ago. It is necessary to keep going, but sometimes it really does feel like bashing your head against a brick wall. 

RELAPSE 3: SURVIVING

In his book The Selfish Gene, Richard Dawkins described living organisms as "survival machines". We are, his point was, basically machines whose function it is to procreate and get our genes into the next generation, thus insuring their survival. We are hosts for our genes, and they make us act in a way that makes sure they go on living.

That's pretty much how I feel, like a 'survival machine'. My goal, at the moment, is to survive, and little else. After a long time striving to get better, my objective now is to insure that I don't get any worse. My life is about getting through the days, and getting out the other side unscathed.

It is now eight weeks since I crashed, and it's been a bit of a rollercoaster. The first few weeks were hell, I stabilised a bit, and then started using my rebreathing mask, and began a recovery of sorts. I improved quite quickly over the space of a week, but now I have stalled, and am not, for the moment, getting any better.

The rebreathing mask, as I wrote about in the last post, was prescribed to me by the Breakspear clinic. I have low levels of carbon dioxide in the blood, and the mask is supposed to raise those levels. This happens because when I breathe out while wearing the mask, the mask traps the CO2, and then I 'rebreathe' this CO2 in again, thus bringing my carbon dioxide up to normal levels.

I was using it for a week before my crash. I stopped using it when I got a stomach bug, intending to start again when better, then crashed, and didn't go back to it for a month. When I did, I immediately felt better.

Yet this improvement has now stopped. I have stalled at about ten or fifteen percent less energy than pre-crash days. I was already pretty limited, now my limitations have been exacerbated.

Everything is just that little bit more of an effort, that little bit more difficult. I'm dragging myself around with extra struggle, as if someone had added a couple of kilos to this phantom backpack that I feel like I am carrying around. Standing and cooking dinner takes more out of me, I have now to sit down in the shower, I haven't been out of my home town since it happened, I have seen two of my friends, on two separate occasions, for half an hour each, in seven weeks, and hardly any of my family. Every day is just that ten or twenty percent more of a battle than it was just two months ago.

I have gone back to work, but at a reduced level. I taught two hours last week, and will do four this week. I anticipate maybe getting up to seven or eight a week, compared to twelve to fourteen hours a week pre-crash. I am still lucky enough to be able to work - I know many PWME do not have that ability - but everything will have to be reduced, for now.

Because of this, financial survival is now another necessary objective. I was never comfortable financially, but did manage to save a little to pay for treatment, but now it will be about being able to make rent and pay the bills every month, and little else. I am going to have to cut back on simple things, like going to the cinema, or buying that extra piece of expensive sheep's cheese.

So basically I work, buy food, rest, sleep, cook, eat.  This will be it for the time being. I spend a lot of time on my own, out of necessity, and do feel quite isolated, though in truth I have no desire at the moment to see anyone. A bit of solitude right now is probably all I can cope with, being with people involves either having to pretend that I am better than I really am, or else explaining why I am not well, and how I am feeling, and neither prospect is appealing.

I am continuing with the rebreathing mask, am sleeping in it for a few hours a night, which is awkward but doable, and am using it for a total of about four hours. Breakspear advised me to try it for at least eight weeks, so I'll keep going and see what happens. I have also started using my FIR sauna again, and am up to 40 degrees, and will continue to increase the temperature. No progress from anything yet, though hope springs eternal.

I continue taking the anti-depressants, which help keep me on an even keel and smooth out the bad times. Without them I would surely be a mess, so I am grateful for the balance that they provide. I find that they allow me to take things as they come a little more, to just accept what has happened and to try to deal with it, without melting down into self-recrimination, despair and regret.

It is a period of adjustment, and will take me a few months to work out exactly what I can and cannot do. Right now I am being cautious, and trying to take care. Right now I am thinking of little else but survival. 

RELAPSE 2: SHRINKING

It is now six weeks since I crashed. I have made a partial recovery, but am still well below where I was pre-crash. Two steps back, one step forward. It has been a difficult time.

I have come more or less to understand what happened around the time of the relapse. To explain it fully I would have to go back a bit, to my last Breakspear appointment.

There, I had an autonomic nervous system test, which showed that I had low levels of carbon dioxide (CO2) in my blood. To rectify this the doctor, Dr Shah, gave me a rebreathing mask. I wrote about this here.

The mask is one that fits over my whole face, and has a tube attached. What happens is that when you breathe out while wearing the mask, the carbon dioxide that is breathed out is trapped in the mask and so when you breathe in again, you breathe in extra CO2. This is supposed to raise the levels of CO2 in your body.

The "blood gases" are carbon dioxide and oxygen, and for proper functioning of the body there has to be an adequate balance between the two. The autonomic nervous system (ANS) relies on this correct balance.

Anyway, I came back from Breakspear and started using the mask. I used it for a week, starting at an hour a day and building up to three or four a day. The instructions from Breakspear were to use it for at least four hours a day, and more if I could.

Then I visited a friend of mine, who has kids, and stayed over in their house. Everyone in the house progressively, over the weekend, came down with a nasty stomach bug. I escaped on Sunday evening, thinking I had gotten away with it, but by Monday morning felt horrible, went to bed for the afternoon. I didn't eat for about 30 hours.

When I was recovering from the stomach bug, which knocked me out, I stopped using the mask. It was unwieldy and uncomfortable, and I hadn't noticed any improvement, so I didn't think stopping would do any harm. I had intended to start up again soon.

A week later, while trying to slowly get back to some kind of activity, I crashed. The relapse bore a lot of the hallmarks of previous crashes, insomnia, anxiety, complete exhaustion, shakiness, weakness.

It was a bad crash. I was incapacitated for a few days, and slowly, over days and weeks, began being able to shower, make food, make it up and down the stairs. My limbs were incredibly weak, my voice, I noticed, was really weak, talking of any kind was an huge effort. I was frightened and sleepless and depressed.

I began taking some anti-depressants, which helped a little, and slowly managed to make it out of the house every day, briefly. Still, I was a million miles from where I had been pre-crash. The weakness, in the limbs and in the voice, hung on, and was quite scary. I had no power at all. I couldn't see how I was ever going to get out of it, to get back to work, what I was going to do.

And then I started using the mask again. I felt immediately a little better. I felt sleepy during the day for the first time in weeks, a pleasant, relaxed sleepiness. I started with an hour a day, broken up into fifteen minute sections, and slowly increased my usage of the mask. The weakness faded a little, and my sleep improved, I stopped waking up during the night for 40 or 50 or 60 minutes.

That was last week. I haven't had any more improvements since then. What I think happened now was that after using the mask for a week initially,  my body somehow got used to the extra carbon dioxide, even though I didn't feel any better during the time. And when I stopped, I got stuck somehow in even more of a deficit of CO2. This deficit, coupled with the aftermath of the stomach bug, weakened me, and when I tried to get back to normal life, I crashed.

Of course there is another element to the relapse, and it is a deadline. Deadlines have always been lethal for me in terms of worsening of my ME. By 'deadlines', I mean having to be well - or telling myself that I have to be well - by a certain date. This leads to pushing myself, doing too much at the wrong time, getting frustrated. A lethal mixture.

The deadline this time was a flight to Spain that I had booked for the following week. It occurred to me, while trying to get over my stomach bug, that I needed to start doing things now, a week before my flight, if I was going to be able to manage to make it to Spain, let alone last four days there. So I forced things, pushed when I shouldn't have, and the rest is history.

It almost doesn't matter how it happened now, though. The key thing is that it has happened, and I have to deal with it. As anyone who read my last post will discover, I haven't been dealing with it very well. I have been very depressed at times, despite all of the anti-depressants I have been taking.

Now, though, I am continuing to use the rebreathing mask, and hoping for a little more improvement, though as yet I've had nothing. The story with the mask is a little more unclear. I used it for a week, felt no benefit, and assume that my body reacted badly to being denied this extra CO2 when I stopped it. I don't do well with abrupt changes of any kind, and I assume that that's what happened. Then, after the crash, I suppose I got stuck in this extra cycle of CO2 lack, and spiralled even further down.

Whatever the truth, I am operating now on about 15/20% less energy than I had pre-crash, and it's not coming back. Things that were doable and not needing enormous effort just two months ago are now tough, like going to the supermarket, or meeting a friend. Everything is an effort, a struggle.

I have an intermittent tight chest, continued weakness in the limbs and in the voice, a shakiness and shortness of breath that wasn't there before, and a worsening of my digestion, with more gurgling and gas. I am shrunken, less than I was.

The implications of this are many. Having less energy means I will have to shrink my working time and increase my time resting. And of course my income has shrunk too, and so I will have to budget even more carefully. My social life has shrunk to almost nothing, and time spent with friends and family will have to be cut back.

What has increased is this dread and fear for the future. The truth is that another relapse like this, and I will be close to house-bound. My greatest fear is not being able to look after myself, and that is really one serious crash away.

I now see the world as a threatening place. Especially now, at the beginning of winter, the world is full of infections, and viruses, of stress and opportunities for over-exertion, a myriad of potential threats. This experience - sparked by a seemingly innocuous stomach infection - has shown me that there is no escape from ME, there is never an end to the danger, you can never, ever drop your guard.

ME is always there, waiting for a chance to pounce, a moment of weakness, waiting for an opportunity to increase disability, to add insult to injury. There are a few things that I intend to try, to attempt to make some progress, get back some of what has been lost. However, my life, my shrunken life, for the moment, is about survival, and little else.

RELAPSE

The worst experiences of my life have been relapses of my CFS. There is no comparison between anything else I have ever gone through, relapses are like being in hell for me.

There are a number of reasons why this is so. The first is that it is often when I am doing quite well, relatively, that I have these crashes. I am relatively active, have things under control, and probably get complacent, start thinking that I have this whole condition sussed out, more or less. So it is the collapse in the middle of a period of relative health that makes it so painful.

The second, and more impactful reason, is that when I have a crash, I do recover to a certain extent, but often I don't get back to my pre-relapse state of health. I lose something. I have this incredible crash, am incapacitated, rest, recover, slowly, slowly come back to limited activity, and find that I hit the ceiling earlier than months before, pre-crash. My relapses are not just passing periods of ill-health, they actually do lasting damage that doesn't just fade with time.

Thirdly, what makes them so horrendous is that I play a part in causing them. They usually follow some kind of infection or cold or flu. I know that I need weeks to recover from these, but on occasions in the past I have pushed it, tried to get back to activity too soon, and one day found that I simply couldn't move any more, that I am exhausted, drained, sleepless, massively anxious, regretful, short of breath. And I know that if I had just taken a little more time, rested more, I would have got through it and out the other side. The knowledge of my responsibility in the relapse is one of the most poisonous aspects of having to live with it.

I suppose I should examine what exactly I mean by a relapse. As I said, they always follow a cold, a sore throat, an infection of some kind. Any kind of challenge to my immune system leaves me prostrate, exhausted, it effects me profoundly. I have had five or six colds in the last two years, and have taken my time with each one, shut myself away for seven, ten days, rested, slowly increased activity, been very very careful. This is difficult when I am working, as I am in general, but I have done it.

At times in the past though, on occasions I have started trying to get back to activity after say four or five days. I often don't feel great, but I generally don't feel great anyway, so I don't really think much of it and try to keep going. This is where I get into serious trouble, and it usually creeps up on me until the collapse has happened before I have even noticed, and it is too late. And it is irreversible. Once I have had one or two days of even slight over-exertion - and I'm not talking running a marathon here, it can be as little as going to the supermarket, or teaching a class for an hour - I am a goner.

The relapse is marked by anxiety, a sleepless night, twitching muscles, utter exhaustion, difficulty standing, and then often depression. It generally lasts anything from six weeks to three months. Sometimes, I can come out the other end more or less unscathed, other times when I finally emerge, I am less than when I went in.

To me what happens during these relapses are the key to my ME/CFS. They are the reason I am no longer able to work full time, as I was able to do about three years in to my illness. Then I had a succession of relapses that robbed me of a lot of functionality, and left me with little energy for years, until I learned to manage things better and started taking some supplements that helped.

If I could just find out what happens to my central nervous system during these irreversible relapses, I could find a key to what is going wrong in general. What changes, what is damaged. My system seems to get stuck into an even more unbalanced state, and there is no shifting it, no way of going back, no way of healing what has been damaged. I don't understand what happens, and I really need to.

I mention this as I have recently had another relapse. In fact, I think I had two, in quick succession. I don't think I can go into the details at the moment, just thinking about them is almost more than I can bear. I may write about it again.

Suffice it to say that I have gone from a semi-functional person, who had a limited social life, a reduced working life and who operated at about 70% on a good day, to a bit of a wreck. I don't ever remember being so weak, my legs when I walk feel like lead, everything is an effort, I feel about eighty years old.

I may regain some kind of functionality, but it does look like there has been damage done, and actually quite significant damage. I wake up every morning and it takes me a few seconds to realise that it is not all a bad dream. I actually can't really believe that I now have to live like this. I went to a few shops today, something I would have done a month ago without thinking, and thought I was going to pass out.

I am frightened, inconsolable, regretful, bereft, grief-stricken. I am not handling the whole thing very well. I am taking some SSRI anti-depressants, Lexapro, that helped me before during a previous relapse, and these have at least stabilised me, emotionally, and helped me sleep a little, but they cannot hold back the waves of depression and regret that hit me four or five or six times a day. And of course I am having to rest so much that I also have a lot of time to think. Too much time.

Luckily my parents live close, and my mother helped me during the worst of the crisis, when I wasn't even able to make food for myself. But I am now in general very isolated. I do manage to get out of the house now once a day, for a drive or to the local shop, but most of the time I am here in my house, and usually in my room, on my own. I live in this shared house situation, which is difficult, and even more difficult now that a new guy has just moved into the house. I hardly have the energy to introduce myself, and haven't actually met him yet.

As it is the start of the academic year there were three or four night classes I usually organize that were due to start about now, that I have had to ask other people to teach. Students from last year have been wanting classes, and I have had to fob them off, tell them that I hope to be back in a few weeks. But it could be a good while before I can teach again, and even then I will be lucky to be able to do more than an hour a day.

It all amounts to a kind of personal catastrophe for me. With no work I have no way of paying for the ongoing treatment I was hoping to have in Breakspear, and anyway no energy to actually get there. I am shell-shocked by the swiftness and magnitude of my collapse and really have not yet come to terms with it.

A lot of things have been swirling around my head in the last month, sadness, fear, regret, anger at myself, though one question above all others keeps coming back to my mind. - What the fuck do I do now?

BREAKSPEAR 4: O2 AND CO2

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.  

PRISON

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!)

A TIRADE.

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.