SOLITUDE

Once I was sure that my recent improvement in health and energy was real, I made two major changes in my life. The first was that I joined a gym and began exercising. After my recent car crash, I have had to put that on hold, I still have aches and pains in various places. I miss it a lot, and hope to get back to it again in the future.

The second thing was that I signed up for Match.com. Match.com is a dating site, you put your profile up on the site and say what kind of person you are looking for, and what kind of person you are. The site then sends you suggestions of people you might be interested in. You can message them, or wait for them to message you.

I have had ME/CFS for over sixteen years now. In that time I have had two short relationships, neither of which went very far, and most of the time I haven't been in any kind of state to be able to meet someone and try to build something.

Before Christmas, though, I felt ready. I felt like seeing what it was like again to meet a woman I was interested in, to get back that excitement and passion and security that a relationship can bring.

I connected with someone on the site quite quickly, and went on a couple of dates. She lived an hour and a quarter's drive away though, so it wasn't very practical, but I was anxious to see where it led, and happy to be back in this world that most people take for granted. So I drove there and back twice. I enjoyed her company, we got on well, I think, though I wasn't sure how much potential there was for starting something between us.

Anyhow, after a couple of weeks it basically fizzled out. I wasn't too upset, to be honest, I was happy just to be back in the world of romance and dating, to be open to a normal human experience that I have been denied for so long.

That was a few months ago, and I haven't met anyone else in that time. I have messaged a few women, who have not replied, and have received a few messages from women that I in turn am not interested in. One problem is that most people on the site are a good drive away, there are not that many single women in my area.

Another issue, I have begun to realise, is that I don't know if I am really ready for a relationship, or if I really want one. The thing is that I have been on my own for so long, I have been managing my health, doing what I can, when I can, that I am not good at compromise. I have a need, like most PWMEs, to have control over my life as much as possible and not have to fit someone else into my world.

Solitude has been a fact of life for me for so long now, I can't remember another way of living. At the moment I am teaching quite a lot, for me, about sixty percent of a full week, and so don't spend a lot of time on my own. I have two, three or four classes a day, and am mixing with people all the time.

Outside of work I have some family that I see from time to time, and one or two friends, but I have developed a rhythm where I do what I want, when I want, when I feel able. I go to the cinema on my own, go to the gym on my own, go shopping on my own, just as I have been doing for years.

The thing about being with people is that they are tiring. Other people are exhausting. Just conversing at times is too much for me, and having to fit in with their demands and desires and habits is a lot to take. And so solitude is a prerequisite for someone with a condition that drains your energy and robs you of control over the basic things of your life.

I am, and have been, on my own so much because I cannot live any other way. Up until two years ago I lived with my parents, but even then I spent a lot of time in my bedroom and not a lot with them. I moved into shared accommodation then, but the other people in the house keep themselves to themselves a lot and so I rarely see them. Moving out of my folks' house was the best thing I have done in a decade, and has improved my quality of life hugely. It has made me a little more solitary, but has given me back more control and independence.

So I actually like my life now. I am about seventy or seventy-five percent recovered, enough to do a lot of things I thought I wouldn't be able to do again, though still in a limited fashion. I don't mind all of the time I spent on my own, I am usually busy, never bored, have been doing this so long now that it is second nature. I may be solitary but I am usually not lonely. Or else it is the case that I have been lonely for so long that I don't notice it anymore. Whatever I am, it is not a state that I find unbearable.

I am going to cancel my membership to Match.com this month. I suppose that I don't really believe that I will, at forty-two, meet someone I like enough, and who likes me enough, to make me want to change my life to absorb them into it. A relationship would be a huge upheaval in my life and would involve some major changes, and I don't really know if I am ready for that.

I don't rule out the prospect, but right now it doesn't seem very likely. And, for the moment, I'm fine with that. 

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.