Before I get to the meat of this, let me celebrate this historic day by saying CONGRATULATIONS IRELAND! You beautiful, wonderful, brilliant people. Thank you for voting to allow women and other pregnant people to make their own choices about their own bodies. Thank you for voting for people not to be forced to travel abroad to get the abortions they need. Thank you for voting for safe, regulated abortions, rather than illegal, unsafe ones. Thank you.
And now, back to your regularly scheduled reading.
People like to tell me that of course I’m going to recover from ME/CFS, but I’ve always known that was bullshit. I grew up knowing that my sister’s best friend had had it for years. On the cusp of her adulthood, my sister herself got it and has had it ever since, now severely. My uncle has had it for years. I know that people have this illness long term and often permanently. Anybody who thinks otherwise is fooling themselves.
Despite the fact that telling me I’ll recover is one of the quickest ways to stir me to fury, I’ve become aware, in the last few weeks, that I’ve been living all this time on the assumption that I will. Subconsciously, but still.
I understand now that this needs to stop.
It’s one of those odd, insidious things that you don’t even notice until something happens that make you suddenly understand that that’s what’s going on. Right now I can’t even remember what it was, but understanding suddenly came to me just a few weeks ago.
ME/CFS is an condition that many people don’t recover from and hardly any recover from fully. There are few statistics on the subject and even fewer reliable ones. Dr. David Bell, who studied patients with the illness for many years, says that the recovery prognosis is poor and that complete recovery is rare. A 2005 study which performed a systematic review of studies about CFS prognosis concluded that full recovery occurred at a rate of about 5%, while about 40% of patients improved to some extent . In addition, around 25% of ME/CFS patients are severely ill and show no improvement, whatever the attempted treatment.
These are frightening statistics. I am frightened. I don’t want to live like this. Right now, it seems utterly impossible to do so.
The most common pattern of ME/CFS patients is for their life to be perfectly normal, for them to have an illness, and then for them simply to never quite recover. This isn’t entirely true, of course; most people with the illness, when they look back, identify a preliminary period of being run-down physically or mentally, or both, but this is not yet widely recognised.
My own experience is highly typical. I’ve always been physically strong and robust. I mean, so healthy that it’s almost insulting. Mentally it’s been a different story. My father’s emotional abuse meant that I grew up with the conviction that I was a bad, horrible person. I don’t know whether I was mentally ill as a teenager; I still find it hard to and prefer not to think about my childhood at all, and the fact that I didn’t understand his true nature until I was an adult confuses the issue further. I certainly was depressed for most of my twenties, and an unexpected, months-long isolation in a place where I didn’t know anyone triggered a really bad depression at the start of 2012. I experienced psychosis, attempted suicide twice, and self-harmed constantly. Even then, I remained physically healthy for a long time, walking seven or eight miles at least once a week, and two or three miles two or three times a week.
It’s hard to pinpoint when I started to decline physically; it happened so gradually. Certainly I began to notice it during 2015. I would only be able to walk three or four miles without noticeable fatigue. I was sleeping badly. I began to find ten-hour days at work more of a challenge (physically, that is; I had long been struggling mentally). Then, at the end of February 2016, I caught tonsillitis, and it turned into quinsy. This was the illness that triggered my ME/CFS, though I didn’t know it at the time.
Even then, I seemed to recover – up to a point. Things still made me tired; packing to move house a few weeks later was a nightmare. But I’d been seriously ill, I imagined it would just take me a bit longer than usual to bounce back. I understand now, of course, that I was far less recovered than I thought I was. It didn’t occur to me to take my previous tiredness and bad sleep into account; I didn’t even realise I ought to be careful, despite having two family members with ME/CFS.
To cut a long story short, I’ve been declining, slowly but surely, ever since then. Perhaps I still am. It’s hard to tell, but, going by previous experience, it seems probable.
And despite all of this, I have believed, deep inside myself, that I’m going to recover. It just doesn’t seem real that I might have to live for another three, four, five decades like this. My brain can’t comprehend it; can’t imagine it; can’t make it seem real. When I dream at night, I dream of walking and running, not sitting and lying. When I think of things I love, I still think of cooking and gardening. When I think about my friends, I still think that perhaps I’ll be able to go and visit them a year or two down the line. Nipping to the Post Office or getting the bus into town still seem like things that I’ll be able to do again in a few weeks, once I’ve got over this bad patch.
These things aren’t real, though. Each bad patch turns into a worse one, and good days now are like bad days a year ago. Will good days in a year look like bad days now? I can’t think about that; it’s much too frightening. But neither can I keep living with the underlying assumption that better times are just around the corner. They aren’t.
So now, the big question is how? How do I accept that this quarter-life is now my entire life? How do I accept the loss of all the things I can’t do any more? How do I be happy?