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.