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.