I usually put the anniversary of the beginning of my experience with ME/CFS at the beginning of December. I got a cold in late November, 1997, and that was the last time that I was fully healthy.
Yet all during that year, 1997, I was ill. I had constant sore throats, chest infections, colds, flus. I would finally get over one illness and two weeks later I would be sick again. I was missing a lot of work, and even when I managed to get in to work I would be struggling through the day, just about managing. The illnesses were not very serious in themselves, but they tended to last a long time and cause me profound exhaustion and post-viral fatigue. I was being dragged down and down and down, my immune system was not working successfully, and I was depressed and under a lot of stress.
It is obvious now that that was all laying the groundwork for the real collapse that came later. So it is now twenty years ago, and more, that that all happened. I look back on the person in his mid-twenties that I was then, and feel sorry for him; he was so clueless, so ignorant of how to deal with this slow destruction of his health, so lost. I never really had a chance.
I can now see that part of the problem was that I needed time to get over the various infections that I caught, and I didn’t always give that time to myself. I didn’t always take the time I needed to recover, and was too hard on myself; I have to get back to work, I thought, they are going to fire me if I miss more time, what are my students going to do without me? The truth was, by forcing myself to work when I was sick, I made everything worse and so missed more time. My students would have been fine with a sub for a few more days. The world did not need me to be superhuman and invulnerable.
My mind goes back twenty years because what happened then is still happening. Whatever flaw or weakness in my immune system or central nervous system that exists, it is a fact that I need a lot of rest and a good length of time to get over something simple like a sore throat. I have made a lot of progress since my worst days – and in general I am probably in better shape now than back in 1997, before the official beginning of ME/CFS for me – but a minor infection like a cold or stomach bug still floors me, just as it did then. Nothing else has such a profound effect on my whole being, nothing else leaves me so utterly incapable of functioning.
And I am still making the same mistakes. Ten days ago I got a sore throat – annoyingly during the spate of hot weather that we had – and now I am hardly any better, and in fact it has moved to my chest now and it is difficult to breathe. I had organized a launch in Dublin for a book that I published last year, and so had to travel down on the train last week – two days into my illness – and speak for two hours in front of a crowd. This was stressful and tiring and so obviously I paid for this, and just got more ill.
I tried to keep going a little when I came home, doing a little shopping, visiting people, short walks, but of course by this morning I realized that I felt like shit and was probably even worse than before. I was reminded of the fact that I all too easily forget; to get over any kind of infection, I have to stop everything. Everything has to be shut down. I stay in, eat, sleep, maybe shower (though not always) and do almost nothing else. This is my only way to recover: intense, deep rest. Just as it was twenty years ago.
Every time I get sick, my mind goes back to all of those other episodes of illness that I have experienced in the past. It is traumatic for me, I think, because I am not good with inactivity, I don’t like just sitting still and I always thing that I am missing something. And by now, I have lost so much time over the length of my illness, that having to take even more time out to get over a cold seems like such a waste.
I don’t look back very often, and don’t tend to have a very good memory for events in the past, but there is one two-week period from March 1997 that I cannot forget, much as I would like to.
I was teaching English in Lisbon, Portugal. I got sick on the Monday (it nearly always happened on Mondays and Tuesdays, after a late night out on Saturday), and it soon developed into a chest infection. I took a couple of days off, but by Friday I reckoned that I really should be better, (I wasn’t) and needed to go back.
At that time I had Saturday morning classes, so for some reason I rang the school on Friday and told them that I would be in. I still felt like shit though, and that night I didn’t sleep, realizing that I had made a mistake. I went in on Saturday anyway, crawled through my classes and came home and crashed.
I had arranged to go to a Portuguese friend’s house in the country that weekend and so, even though I was in no fit state to go on a weekend away, I left on the Sunday morning with two of my friends (it was a long weekend; we all had three days off the following week). I had been looking forward to going away and so, rather than miss out, I said I was recovered and headed off. I remember thinking that I desperately did not want to be on my own that long weekend.
That night, in the house in the country, again I didn’t sleep; I had difficulty breathing and was anxious. When my friends went out to the local shop, I walked to the nearest village and took a bus back to Lisbon. I had now really lost the plot. I was stressed, ill and didn’t know what I was doing. I clearly remember that journey on the rickety bus back to the city, constantly using my Ventolin inhaler and still having difficulty breathing.
I made it back to my empty flat. Instead of resting, as I knew I should do, I went out into the city, did some walking and shopping. I still don’t really know why. By the time Wednesday came around again and I had to go back to work, I was still ill. I went back anyway, and had to take another week off (just after a five day weekend) to finally clear my chest infection.
I drove myself into the ground with my restlessness, my inability to just take the time I needed, my refusal to listen to my body. That two-week spell is crystal clear in my mind, like very few other times are, because of the level of frustration, anxiety and illness I went through. And I have never really adapted to this frustration with my sluggish immune system: it makes me so annoyed to have to undergo this trauma of weeks and weeks of being affected if I get so much as a sore throat. It is exhausting, and has shaped my life profoundly in the last twenty years.
In twenty years time, I will be near retirement age: a thought that is more terrifying than anything else in my life. But twenty years ago was when it all started.