Lately I’ve begun to think of a certain line from a Gene song*:
“It’s time to tell my friends I love them”
(* We Could Be Kings.)
This is because I just don’t get the chance to do it in person anymore (not that I go around telling friends that I love them anyway – I don’t live in an American sitcom). Not only do men my age tend to lose touch with friends (we don’t keep in touch as well as women do), but it’s amplified when you also have M.E. and mostly only leave the house on errands.
Unlike those more seriously affected, at least I do get to leave the house (and do so without assistance), and occasionally I’ll have the energy to do something more interesting than go to Sainsbury’s. But the PEM (post-exertion fatigue) often makes it a gamble not worth taking. As I get older I find my symptoms worsen upon less and less exertion. More and more time has to be built in to anything I do, as I have to rest up beforehand (a day out would need two days rest in the lead up to it; an evening out a whole day’s rest before venturing out), and allow time afterwards – when I will, without fail, feel like I have the mix of the flu with a bad hangover, despite not drinking.
I haven’t seen most of my friends in years – indeed, between three and ten years in most cases. Bar one exception they do not live locally and travelling to see them is hard work – a weekend away could take a week to recover from, and with my football writing and running a business (The Tomkins Times website I created for my own writing but which grew to employ other people) I just don’t have anything left in the tank. Still, I miss them.
Part of the slowing down may also be hitting my mid-forties, and it saddens me to think that the version of me that was diagnosed aged 28 (the last time I was able to partake in any sport) is long gone. My main aim was always to play football again and it seems that my best hope now, if I recover, will be the walking variety showcased on those bank adverts.
I’ve had to give up so many things I love, and whatever I can still do is that much harder. The internet has made it slightly less alienating – and I’m certainly not some unseen sufferer in that sense (so I’m not one of the invisible millions, lost in their bedrooms) – but the internet also shows frequent reminders of what is being missed out on. Today is #millionsmissing day, and this is my small token towards it (I wanted to write something better my ‘brain fog’ is bad right now). If I’m not totally absent, I am at least missing out on lots, and missing from my old social scenes. Weirdly, I still regularly have dreams about turning up to my old job at The Guardian, which I left due to ill health in early 2000, and everyone says “where have you been?”, or note that I have 16 years of work to catch up on.
Whenever I have a bit of spare energy now I work on my second novel, which is a form of catharsis. I recently celebrated passing 10,000 sales on The Girl on the Pier, which, along with the award of a Kirkus Star (and the many satisfied readers) has validated the effort – but it takes me much longer to write with an illness and other responsibilities. I enjoy it more than the football writing because it is not as dependent on external situations, and doesn’t arouse as much stress and abuse. It’s a peaceful process, and I get to go to places in my mind that I cannot in person. Life would probably be easier if I didn’t do this either, but it’s essentially my only hobby.
The good news is that after being detected in gene expression and various other biological markers in a huge number of (usually small) studies, M.E. has finally be detected in the blood, with evidence of a chemical pattern similar to a state of hibernation (“dauer”) experienced by certain animals when their environment is wiped out. Also, the PACE trial – which was a case of bad science bolstering unhelpful and even damaging treatments – has been debunked, with a court forcing the research to be made public. (On a personal note, I undertook the two recommended treatments – graded exercise and cognitive behaviour therapy – in late 2013, and found them temporarily helpful. But then I hit a wall, and my health is now worse than when I started. That said, I can’t state that it definitely made me worse, as my health was tending to get a bit worse every year anyway.)
So with lots of disconnected medical breakthroughs maybe there’s a cure on the horizon, or at least a better understanding of the condition. Even now I don’t mention my illness to anyone I meet in daily life as it’s too hard to explain, especially when I don’t look particularly ill. Like most sufferers no one sees me on my bad days – which involve muscle pain, headaches, dizziness, hot and cold spells, and other problems that go way beyond fatigue.
But here’s hoping. Maybe in the next few years we can all leave our various stages of hibernation and, instead of being missing, return fully to the world.
For more on my experiences with M.E. see the piece I wrote a couple of years ago, and was intended to serve as the best description I could manage: http://paultomkins.com/we-are-death-warmed-up/
For more on the possible blood tests for me, see http://www.telegraph.co.uk/news/2016/08/30/scientists-find-signature-of-chronic-fatigue-syndrome-in-blood-w/
For more on the scandal of the PACE trial, see https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/