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.  

SO HOW EXACTLY AM I?

So day to day, how exactly does Chronic Fatigue Syndrome effect me?

I have been asked this a number of times, of course, and I always find it hard to answer. This is because, after fifteen years with this, living with CFS is now the new normal for me. I can hardly remember anything else. People ask me if I am effected this way or that, but it takes a real effort to recall my life pre-CFS and to try and figure out how I should be feeling.

The thing is that I have organised my whole existence around adapting to this illness. I have a routine that helps a lot in coping. I get up at approximately the same time every day and go to bed at the same hour most nights. I eat regularly and healthily, don't eat any sugar, and don't drink tea, coffee, soft drinks or alcohol.

I have a nap every day, just 30 minutes before lunch, but it makes a big difference in what I can do. Sometimes I will have another nap around five, if I have a particularly busy day, just to allow me to function.

And I pace myself. The golden rule of .... activity - rest - activity - rest - activity - rest. I teach part time, private classes, some night classes. I have been able to organize my schedule so that I may have one class in the morning, then one in the afternoon, and a night class around 8pm. This would annoy some people, having work so split up over a day, but it is the only way that I can function.

Between my scheduled classes and activities I prepare classes. With the rest of the time I shower, watch TV, read, write, blog, eat and rest. Everything in moderation, nothing for too long, trying to change activities or rest every half hour or hour.

It may sound tedious or irritating or empty to other people, but it is literally the only way that I can survive, and I have grown used to this by now. At the moment I don't mind my life, limited though it is. It is at a level that I can cope with. This is a forward step. There have been times in the past when I have hated my life.

I am able to go out now, socially, to bars, cinemas, nightclubs occasionally, though I find that I can't stand for long periods, and tend to come home about one or half past. I have had later nights, and can do it, though am fairly drained the next day and so tend to avoid doing that.

I am also able to travel, though again with limits. Air travel is exhausting, with all the standing in line and walking from terminal to gate. It's doable, but not something I relish. Driving any long distance is tiring, anything over about two and a half hours leaves me not fit for much else that day.

There are also some other problems, in addition to the fatigue. I have a range of food intolerances, such as cow's milk products, gluten, corn, various cooking oils, so if I eat any kind of quantity of these I can get fairly dodgy stomach symptoms. I get occasional headaches, have trouble standing for very long before my blood pressure drops, and experience sleep disturbances at times. I also have prostatitis, which means I may have to got to the bathroom more often than most people.

And my immune system is clearly compromised. If I overdo it I inevitably end up with a cold or flu, and these tend to wipe me out completely. The effect of a simple cold on my system is fairly extreme. I am usually housebound for a week, off work for ten days at least, and really don't feel "normal" for at least two weeks. The common cold hits me like a sledgehammer.

So I am operating at somewhere between 60% and 70% of full, pre-illness capacity, though I can't really be sure about that as it is sixteen years since I was in any way healthy. It is enough for me to have some kind of limited life, and for many people who know me to be unaware that I have CFS.

Yet my life is limited, and everything I do is dependent on my energy levels and state of health. I live the life of a half-healthy, half-ill person. Everything is compromised. There's no way I can work full-time, and find it difficult to establish any kind of romantic relationship. If I don't improve, there are still many normal things that I will most likely never do, like have a career, have children, own a house, save for a pension.

I have reached a stage where I can just about cope with what I have constructed as my everyday life, though out-of-the-ordinary stressors leave me struggling. But it is still limited, and basic things are still very often a huge effort. And frustration is a constant, frustration at my limitations, at the symptoms that I have that I can't do anything about, at the lack of control in my life.

No life is without frustrations, but life with chronic fatigue syndrome is one compromise after another while you try to eke out what ever bit of useful existence that your limited energy will allow.