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. 

RELAPSE 2: SHRINKING

It is now six weeks since I crashed. I have made a partial recovery, but am still well below where I was pre-crash. Two steps back, one step forward. It has been a difficult time.

I have come more or less to understand what happened around the time of the relapse. To explain it fully I would have to go back a bit, to my last Breakspear appointment.

There, I had an autonomic nervous system test, which showed that I had low levels of carbon dioxide (CO2) in my blood. To rectify this the doctor, Dr Shah, gave me a rebreathing mask. I wrote about this here.

The mask is one that fits over my whole face, and has a tube attached. What happens is that when you breathe out while wearing the mask, the carbon dioxide that is breathed out is trapped in the mask and so when you breathe in again, you breathe in extra CO2. This is supposed to raise the levels of CO2 in your body.

The "blood gases" are carbon dioxide and oxygen, and for proper functioning of the body there has to be an adequate balance between the two. The autonomic nervous system (ANS) relies on this correct balance.

Anyway, I came back from Breakspear and started using the mask. I used it for a week, starting at an hour a day and building up to three or four a day. The instructions from Breakspear were to use it for at least four hours a day, and more if I could.

Then I visited a friend of mine, who has kids, and stayed over in their house. Everyone in the house progressively, over the weekend, came down with a nasty stomach bug. I escaped on Sunday evening, thinking I had gotten away with it, but by Monday morning felt horrible, went to bed for the afternoon. I didn't eat for about 30 hours.

When I was recovering from the stomach bug, which knocked me out, I stopped using the mask. It was unwieldy and uncomfortable, and I hadn't noticed any improvement, so I didn't think stopping would do any harm. I had intended to start up again soon.

A week later, while trying to slowly get back to some kind of activity, I crashed. The relapse bore a lot of the hallmarks of previous crashes, insomnia, anxiety, complete exhaustion, shakiness, weakness.

It was a bad crash. I was incapacitated for a few days, and slowly, over days and weeks, began being able to shower, make food, make it up and down the stairs. My limbs were incredibly weak, my voice, I noticed, was really weak, talking of any kind was an huge effort. I was frightened and sleepless and depressed.

I began taking some anti-depressants, which helped a little, and slowly managed to make it out of the house every day, briefly. Still, I was a million miles from where I had been pre-crash. The weakness, in the limbs and in the voice, hung on, and was quite scary. I had no power at all. I couldn't see how I was ever going to get out of it, to get back to work, what I was going to do.

And then I started using the mask again. I felt immediately a little better. I felt sleepy during the day for the first time in weeks, a pleasant, relaxed sleepiness. I started with an hour a day, broken up into fifteen minute sections, and slowly increased my usage of the mask. The weakness faded a little, and my sleep improved, I stopped waking up during the night for 40 or 50 or 60 minutes.

That was last week. I haven't had any more improvements since then. What I think happened now was that after using the mask for a week initially,  my body somehow got used to the extra carbon dioxide, even though I didn't feel any better during the time. And when I stopped, I got stuck somehow in even more of a deficit of CO2. This deficit, coupled with the aftermath of the stomach bug, weakened me, and when I tried to get back to normal life, I crashed.

Of course there is another element to the relapse, and it is a deadline. Deadlines have always been lethal for me in terms of worsening of my ME. By 'deadlines', I mean having to be well - or telling myself that I have to be well - by a certain date. This leads to pushing myself, doing too much at the wrong time, getting frustrated. A lethal mixture.

The deadline this time was a flight to Spain that I had booked for the following week. It occurred to me, while trying to get over my stomach bug, that I needed to start doing things now, a week before my flight, if I was going to be able to manage to make it to Spain, let alone last four days there. So I forced things, pushed when I shouldn't have, and the rest is history.

It almost doesn't matter how it happened now, though. The key thing is that it has happened, and I have to deal with it. As anyone who read my last post will discover, I haven't been dealing with it very well. I have been very depressed at times, despite all of the anti-depressants I have been taking.

Now, though, I am continuing to use the rebreathing mask, and hoping for a little more improvement, though as yet I've had nothing. The story with the mask is a little more unclear. I used it for a week, felt no benefit, and assume that my body reacted badly to being denied this extra CO2 when I stopped it. I don't do well with abrupt changes of any kind, and I assume that that's what happened. Then, after the crash, I suppose I got stuck in this extra cycle of CO2 lack, and spiralled even further down.

Whatever the truth, I am operating now on about 15/20% less energy than I had pre-crash, and it's not coming back. Things that were doable and not needing enormous effort just two months ago are now tough, like going to the supermarket, or meeting a friend. Everything is an effort, a struggle.

I have an intermittent tight chest, continued weakness in the limbs and in the voice, a shakiness and shortness of breath that wasn't there before, and a worsening of my digestion, with more gurgling and gas. I am shrunken, less than I was.

The implications of this are many. Having less energy means I will have to shrink my working time and increase my time resting. And of course my income has shrunk too, and so I will have to budget even more carefully. My social life has shrunk to almost nothing, and time spent with friends and family will have to be cut back.

What has increased is this dread and fear for the future. The truth is that another relapse like this, and I will be close to house-bound. My greatest fear is not being able to look after myself, and that is really one serious crash away.

I now see the world as a threatening place. Especially now, at the beginning of winter, the world is full of infections, and viruses, of stress and opportunities for over-exertion, a myriad of potential threats. This experience - sparked by a seemingly innocuous stomach infection - has shown me that there is no escape from ME, there is never an end to the danger, you can never, ever drop your guard.

ME is always there, waiting for a chance to pounce, a moment of weakness, waiting for an opportunity to increase disability, to add insult to injury. There are a few things that I intend to try, to attempt to make some progress, get back some of what has been lost. However, my life, my shrunken life, for the moment, is about survival, and little else.