ME Awareness Day – my semi-remission story

Those loyal few who actually read my blog will have noticed a yawning gap of ten months between this and my last blog post. For first-time readers who came here via Sally Burch’s May 12th Blog Bomb (apologies for lack of links in this post – I’m writing it on my phone as laptop is slower than…me on a bad day), here’s a quick re-cap…

At the end of 2013, I had a particularly bad relapse of ME. By January 2014, I was forced to stop working as a self-employed locum GP. An Occupational Health consultant advised me to ‘find a non-clinical job, which basically meant stop being a doctor who sees patients. There weren’t any suitable posts for me locally and the ones about which my senior colleague emailed me, trying to be helpful, were full-time and would have involved a long commute. This was around fifteen months ago when l was mostly housebound except for the five-minute walk l forced myself to do each day to make sure my muscles didn’t wither away. I had long naps each afternoon, got up to watch Pointless and eat dinner, watched a bit more telly then went back to bed. My waking hours were otherwise spent ‘trying to be a writer’ and I quickly discovered that becoming a successful writer probably takes as long as it had taken me to become a GP. Then I ran out of money.

Luckily, by the time the money ran out, my health was improving a little because I had done pretty much nothing for three months. I started to work a couple of mornings each week. At first, I would come home from work exhausted, my mum would make me eat some lunch then I would sleep for the rest of the day. On days I did not work, I stuck to my intensive resting regimen.

Since my return to work, I have gradually increased my hours. This was absolutely the only way I have been able to manage – I’m pretty sure that doing more work too quickly would have reversed the improvement in my health that was brought about by time, rest and patience.

In January 2015, I decided it was time to work for a whole day. I also decided that this whole day of work would be a locum GP shift in London. What a reckless move, right? But it was actually ok! I stayed awake and my brain and body worked all day, without the awful ME feeling of leaden head and limbs. As for PEM, yes, I had to have lots of rest when I got home as I was pretty wiped out but I escaped any full-on relapse. While in London, I even fitted in a real-life meet up for the first time with my long-distance friend, Pete, who took me to the British Museum and shared his artistic knowledge with me while I entertained/bored him (couldn’t quite tell. A year in one’s house can make one a little socially inept. One finds).

It hasn’t exactly been a picnic, though. One day, I overdid it by standing up for a long time cooking. Geez, so what? you may be thinking…but the next day I overslept until 3 in the afternoon and was late for work. Yes, imagine someone’s expression as you’re apologising for being late for an afternoon shift because you overslept.

However, overall there has been a great improvement in my health over the last year or so. l am now able to work – drum roll – three whole days per week! l don’t do a great deal else but I’m kind of used to the only very occasional social life now. It means I super-appreciate it when I do see my friends. In March, I saw my friend, Leila, for the first time in seventeen years, at her Hack Circus event, the first one I’d been to,having been too poorly to attend previous ones. So that was fantastic!

There being no treatment for ME (ok, there is CBT, which might help if you have also developed depression or anxiety, and GET, which in my opinion should only be done by physios who understand ME and with patients who are well enough to handle it, but I digress…) the best we can do at present is find our own way through it, figuring out what helps and what doesn’t. This is not ideal. I know that what works for me won’t necessarily help others with ME. I know I’m lucky to be relatively well at present when there are others with ME who are not well enough to work or even to make it out of their bedrooms. But I do hope that my improvement, from being housebound and spending over half the day sleeping, to working three days a week in the job I was advised to quit, will give hope to those of you who are really poorly and struggling at the moment, a real hope that you can get better – maybe not make a full recovery (may the day come when that’s possible) but at least get sufficiently well to live a nice enough life. After all, I don’t think that’s too much to hope for.

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