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.  

CONTROL (AND THE LACK OF IT)

I rent a room in a shared house in my home town. I am the oldest person I know who does not live in a place either that they own, or that they inhabit on their own. At forty-one I am reduced to living like a student.

I live like this, of course, because I can't afford to live anywhere else. I work part-time, and so can't spend much on rent. I don't pay much for my medium sized bedroom, and the house itself is adequate, in a central area, with a good sized back garden. The kitchen and living room are basic, but have everything necessary.

So it allows me to survive. I can cope here, which is something. I have been here more than a year, and have constantly to deal with the lottery that is living with housemates. Before I got sick I lived with a lot of different people, in probably about fifteen different addresses in four different countries, in eight years of healthy adulthood. Little did I know that I would still be doing it fifteen years later.

So far I have been fairly lucky, no axe-murderers yet, though the guy who had been living here for four years when I moved in was a grubby, grimy person and never cleaned up after himself. He moved out six months ago and things have been less stressful since.

And yet it is never simple, sharing with strangers, no matter how reasonable you all are. There are always conflicts, always stressors, always things to negotiate.

And for someone with a chronic illness this is difficult, because the only way that I can manage my basic, everyday life is by minimising stress and trying to maximise the amount of control I have over my environment.

For example, I tend to avoid the people I live with on days when I am busy with work or when I am feeling low or tired, as I simply cannot waste energy making small talk. I imagine I appear somewhat rude or standoffish, but there is nothing I can do about that, and at this stage I have learned not to care.

So far, in the house, I have arrived at a stage where I can cope. I hardly use the living room at all as I find it cold and dark,  as it faces north. The kitchen I use regularly, for cooking and eating, but I spend most my time in the house in my bedroom, which has a TV, my laptop, a comfortable chair.

There I can control my surroundings, I don't have to talk to anyone if I don't want to, I can get the solitude I need after a half a day of work. I can rest when I need. I can watch what I want on television, and turn it off when I want. There is no other way I can live.

So in theory I have reached a stage where things are manageable, which is about all I can hope for with my current mediocre state of health and energy. That is, however, before we talk about Radiohead next door. Of course I don't mean that I am living next to the English alternative rock band, I am referring to a middle-aged man who, every day it's not raining, is out in his garden with his radio on.

And whatever angle the radio is at, the sound comes upwards and enters my bedroom - when I have a window open - as if it was there in the room with me. The radio is one of these ones with an incredibly tinny sound, piercing and squeaky, that is hard on the ears. And he tends to listen to a local radio station that only plays "classic hits" and that announces the death notices.

I find it very intrusive, and has shown me how much I value silence. The guy doesn't seem to work, and so is always around. Most every day I am out of the house for a few hours, teaching or running errands or visiting, but because my energy levels are limited I spend most of my time at home. And when I'm there I am in my room, where Radiohead's radio is, at least 50% of the time, assaulting me.

I have asked him to redirect his radio, or turn it down, and he did for a while but has gone back to playing it at the usual volume. The thing is that it is probably not that loud, and may not even bother most people, but it is insistent and positioned just so that the sound enters my room at maximum volume, and I am more sensitive to noise than most people would be.

And this is where I get back to the idea of control. I have reached a stage where I can control the majority of things in my environment, which allows me to cope. But when Radiohead turns his radio on, and leaves it on for the whole afternoon and evening, that is beyond my control. I can't just go out and do something else as I don't have the energy, and I can't adequately explain to him, so he might understand, that I am sensitive to noise and am really bothered by the insipid, droning local radio station.

I have fantasised about stealing in to his shed - where he keeps his radio - in the middle of the night and destroying the thing with a hammer. It has gotten so that I am considering moving. I will at least try and find a pair of noise-cancelling earphones. I need to resort to these lengths as CFS means that I am much more vulnerable to disruptions and discomforts and inconveniences than most people. Radiohead has stolen a certain amount of control over my environment, control that I need just to survive.

Of course you can never control everything. But when you have a chronic illness so much is out of your control - your level of activity, work, finances, travel, food - that you must have an ability to control what remains within your scope.

And when that ability is compromised, even in a way that would be trivial to most people, it has a disproportionate effect on your life. Small things - and slight losses of control - can have a large negative impact.

It is frustrating to live like this, so dependent on the understanding and consideration of others, almost powerless to do anything about it if people are not reasonable and considerate. There is no easy solution, you just soldier on, and try and wrest back all the minimal control over your life that you can while not being too much of a pain in the ass yourself. As I have said before, a delicate balance.