SICKIVERSARY

Today is my sickiversary. As the name suggests, it is the anniversary of the day that I count as the beginning of my experience with ME/CFS. It was sixteen years ago today. Sixteen long years.

First of all I need to give credit to Jocelyn over at the excellent blog No Poster Girl, for coining the phrase "sickiversary". I think I read it first on her Facebook page though it may have been mentioned in a blog post. It struck me at the time as something worth stealing, and here I am, stealing it!

Usually, an anniversary is something to celebrate. A sickiversary is not. Many of us with ME may actually have trouble pinpointing the exact date of the beginning of our condition, and I know for me I could have chosen three or four dates. But November 30th seems appropriate because the day before November 30th, sixteen years ago, was the last day that I can say that I was more or less well. That seems as good a point as any to begin with.

So what happened on November 30th, 1997? I got a cold. Nothing more, just a head cold. The important point was, though, that I had had a year of constant infections prior to that, a lot of sore throats, chest infections, colds. The cold that began on November 30th was the culmination of twelve months of illness.

At the time I was living in Lisbon, Portugal, teaching English. I was twenty-six, just starting to think about what I was going to do with the rest of my life. Pretty much all of 1997 was taken up with being sick or recovering from illness, nothing serious but just these constant nagging infections.

Because of all of the sick days I had to take, I started to get pressure from work, and then began to go in to work when I really wasn't up to it. This exacerbated my health situation, and meant it took me weeks to get over a simple throat infection.

Of course I was living in a foreign country, and so was a bit isolated there, and also really didn't know what was going on. I was young and had high expectations from myself and from life, and when neither matched up to these expectations, I didn't know how to handle things.

Still, I did have periods of relative health during 1997. In fact, from the beginning of the school year in September until late November when I came down with my cold, I had been relatively illness free. Yet something happened with this winter cold I caught, the runny nose and cough went away within three days, yet this crushing, debilitating fatigue did not.

I went back to work, though I knew that I wasn't able, and actually managed to struggle through three weeks of teaching until I could go home for Christmas. I remember those weeks really well now, even sixteen years later. I suppose I felt then similar to how I feel now. I took a taxi into work each afternoon as I couldn't make it to the bus stop, crawled through my classes, and came home and collapsed at night.

Those few weeks are quite clear to me now. I remember one night in particular. I had recently bought the Radiohead album OK Computer, and this evening I again took a taxi home, shuffled up the stairs to my flat that I shared with two other teachers, and collapsed on to the bed. I put on the Radiohead album on low volume and simply lay there, unable to do anything else. The feeling of being utterly drained is still with me, I can still feel what it was like to be totally incapable of moving in any way, along with the questions I had regarding what was happening to me. I had no idea what was going on.

There have been, as you can imagine in sixteen years, a lot of twists and turns along the way since then. I've been asking myself recently, how much of that twenty six year old is still left? I'm not sure I can answer that.

What I am now is in large part what ME has made me. I have now been dealing with chronic illness for almost exactly two thirds of my adult years, and so I can barely remember what it is like to be able to face into a full day of activity, or spend a day without napping in the middle, or to go twenty four hours without a wave of exhaustion assaulting me. I was still in formation back then, still in the process of becoming, and this process never reached a completion.

So in a sense I feel a little stunted. Suffering from arrested development. While my friends and contemporaries were getting married, having kids, buying houses, building careers, being adults, I was living with my parents, working a couple of hours a week if I was lucky, stumbling through life from one crisis to another. ME/CFS has taken a huge bite out of the best years of my life, and I can never get them back.

How was it possible that I used to be a person that got up, and then started doing stuff for a whole day, until going to bed again? How does someone do that, work a full day, and then maybe go out, or to a night class, or go home and talk to their family, and not have to constantly rest just to make it through each twenty four hour period? I have been so conditioned by sixteen years of how I have to live, of the compromises I have to make, the things I have to turn down, the life events that I have missed, that picturing what it would be like to be healthy is almost beyond the scope of my imagination.

For a long time I suffered a lot of regret and sadness about how it has all turned out, though in the last few years - despite some crashes along the way - I have managed to move out of my folks' place, and to work a little more, to get back something of what I have lost.

I am relatively philosophical today, this day of my sickiversary. Part of that, I think, is from the experience of blogging about this condition. For one thing it is a form of therapy, a way to communicate some of the experience of living every day with this thing. A forum for letting off steam.

For another, I have had the opportunity to read about other people's experiences - many of them much worse than mine - through other ME blogs that I have begun to follow. This has put my own sixteen years into perspective, and has shown me some of the things that I should appreciate about what I have, rather than bemoaning what I have lost.

It also helps that I have just come through a recent relapse, one that knocked me back badly, and now seem to be at least back to my old self, or even actually making some progress. I have been using a rebreathing mask, which I feel is now having something of a positive effect, though it is subtle. Some days I have short periods when I feel the clouds clear a little, and feel the crushing fatigue lift, though I am a long way from being cured. However, the increased CO2 I am getting from the rebreathing mask does now feel like it is doing something.

I may write about this more in the future, when things have settled down a little and I am more sure about how I am. I also still have these debilitating periods pretty much every day when it's difficult to keep my eyes open, or when it feels like I am carrying a concrete block though life, though they are fewer, and don't last as long. For now I am trying to adapt to the slight increase in my energy and well-being, and not count my chickens.

Despite this recent subtle improvement, it still seems remarkable to me that I used to be well once. Sixteen years ago I had never even heard of CFS, or ME, and couldn't have imagined what my late twenties and thirties would bring me. I had what the Spanish call ilusión, a kind of mixture of ambition and desire and wonder about the world, a faith in the future.

This faith, this ilusión, has taken quite a battering in the last decade and a half. Sixteen years later I am still here, still fighting against this chronic situation, still trying to understand what has happened, and why. Sixteen fucking years. Happy sickiversary to me. 

SO HOW DID IT ALL BEGIN?

I suppose I have to address this topic, eventually. I am reluctant for a couple of reasons.

One is that it is sixteen years ago, now, and feels like ancient history. The other - and probably more important reason - is that I know now that if I had done things differently then, I could have avoided a lot of the problems that came later. It's difficult looking back and knowing that fact.

It began in 1997. I was living in Portugal, teaching English, twenty-five years old. The previous year I had been living in Iceland, and began getting these sore throats that took ages to clear, and which really took it out of me.

This continued in Portugal. Any time I went out late, or drank too much, I would inevitably contract a cold, a chest infection or a sore throat two or three days later. I initially tried to continue working through them, but eventually ended up having to take a lot of time off to recover from my various ailments.

It was a very stressful time. I was living in a foreign country, getting ill all the time, and then developed stomach problems, reflux, bloating. I later discovered that it was largely down to a candida overgrowth, because of the all the antibiotics that I had been prescribed, but I didn't know that then.

1997 was a horrible year, yet it was my last pre-CFS year. I was getting these constant infections, taking a few days off, returning to work before I was really better, and then getting ill again. My immune system felt like it was moving at snail's pace.

So the illness created stress, which in turn made me more prone to getting sick again. I crawled through most of the year, with some periods of being well before being hit again with another infection. Eventually, at the beginning of December, I got a cold. The symptoms passed in three days, though the fatigue didn't. I ended up managing to work through that month, I don't know how, and made it to Christmas, when I returned to Ireland.

I was still exhausted, though began to feel a little better with rest. And then came the nail in my coffin.

I decided to get my tonsils out. I felt that I had to do something, and seeing as the majority of the issues I had were in the throat, I figured that the tonsils would be a place to start.

I had the operation in early January, and nothing has been the same since. I don't mean to say that there was anything wrong with the operation, by all accounts it was perfectly standard. The problem was that I was suffering from what was then post-viral fatigue. Some energy had begun to return during my three weeks off over the Christmas period in Ireland, but I was still a long way below recovered.

I believe that if I had just given myself another month of rest, before putting my body through such a trauma as an operation, I would have been healthy enough to go through it as anyone else would.

Yet I felt that I had to get back to work, and went through with it in early January. I was exhausted after it, and wasn't feeling any better over the next weeks. I began to spiral down, sleeping fourteen hours a day, exhausted when I was actually awake. Any kind of exertion seemed to totally wipe me out. For six months I was in bits, and had no idea what was going on.

And that was that. I made a partial recovery, got back to full time work eventually, had relapses, made other partial recoveries, more relapses, and fifteen years later, here I am.

The onset of this condition for me was clearly down to a number of factors. There was the combination of my slowly collapsing immune system and constant infections with the immediate trauma of the tonsilectomy. Those two factors have brought me to where I am today.

It is hard to look back on it, as it was all avoidable. If I had known then some of the things I know now, I could have saved myself.