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
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
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.