I Have ME/CFS now

How It Happened

There was no clear start but, as far as I’ve been able to price it together, this is what happened.

In 2019 I was in very good shape. I had recently got into long distance cycling, taken up bouldering again, got a band together, got my shit together, met my girlfriend… Good times.

In 2020 things went downhill and not just for the usual 2020 reasons. In January I got a particularly bad cold with a cough that lingered for weeks. (I don’t think it was Covid. Though the symptoms were similar, Covid hadn’t officially reached the UK at that point. It is possible due to the amount of unsymptomatic cases with Covid that it arrived here earlier than we thought but that’s hard to say. Anyway…) Then in February I went snowboarding for the second and probably last time. I had done it one other time, a few years ealier and apart from a broken rib it was great fun. This time was different. I couldn’t keep my balance. I got tired very quickly. I got annoyed. In the end I gave up and walked down. The next day I was completely exhausted in a way that I had never been before. Not in an “I’ve used my muscles too much and they’re complaining” way, but in an “I have no energy to give to my muscles” kind of way. It’s hard to explain. I didnt know what was going on. I spent the whole day in bed.

After that, every few months I would feel under the weather. Tired, sore throat. Like I was coming down with something. Over the next few years I went to the doctor several times. Nobody could tell me what was happening. Over that time - early 2020 to late 2022 - I got a little worse. The time between episodes got shorter, the bad times felt worse. In late 2022 I got a new job. And shortly after that I got ill again. Another cold. Nothing terrible in itself but after that I never fully recovered my energy. And until early 2024 I continued to get worse. My energy levels dived. The brain fog got worse. And it came in waves that didn’t seem to correspond to anything I was doing.

In late 2023 my doctor referred me to the Bristol ME service and several months later in early 2024 (please support the NHS, this shouldn’t take that long) I was given a diagnosis of MS/CFS. And as much as it sucks (and it really sucks. I’ll get into that) I’m glad that I did because now at least it has started to make sense.

Now

At the start of 2024 I started tracking what I was doing and how much I was exerting myself. I also tracking my sleep and daily energy levels. For a while this was just depressing. I wasn’t doing much and even that was too much. But after making some changes - reducing my working hours, taking regular breaks during the day, dividing up chores so that I do the less strenuous ones, ordering shopping online etc. - I started to get a handle on things.

That’s not to say that I’m cured. I have to be careful not to overexert myself and if (when) I do there’s no immediate sign that I have, so it’s easy to go too far. I have to judge how much I can do, how long for, how intensely, based on previous experience. And the only way to gather experience is to repeatedly try, fail and then spend days recovering. And my brain doesn’t work like that. I don’t work well with delayed feedback. Hence the diary.

PEM

So if I do too much I “crash”. And it doesn’t have to be physical exercise. Too many meetings at work, too much stress, too much enotion, just too much.

And with the crash comes PEM (Post Exertional Malaise). ME/CFS is different for everyone. For some pain is a big symptom, for others fatigue. When things are bad I mostly get really bad headaches and brain fog. Feels like my skull’s too small and I can’t think straight. Sometimes it feels like I can think straight but I’m watching myself from the inside as my outer self is stumbles around clumsily and fails to put together sentences. It’s not great. Another part of it is fatigue, which I definitely experience but I’ve been doing so little in order to not crash it’s hard to tell where the fatigue ends and my atrophied muscles begin.

Loss

I have lost a lot because of this. Here’s some things I can’t do without crashing (and therefore at all):

• Walking for more than about 5 minutes. Which means no more:
  • Long walks to avoid depression
  • Walking to work
  • Walking along the beach hand in hand watching the sunset
• Bike riding, which I loved. This means no more:
  • Riding out into the country for a summer picnic
  • Long bike rides to improve cardio
  • Riding to work
• Going to work at all. Luckily I can work from home and the company I work for have been very supportive and accomodating
• Climbing
  • I climbed as a child and got back into it in 2019. I had just started getting good but then COVID hit and the climbing gyms shut and when COVID started to retreat (it hasn’t gone away!) then I never got the chance to get back into it
• Drumming
• Playing video games - there’s something about video games that is particular bad. Even simple games are a struggle and first-person games (my favourite) give me motion sickness almost instantly
• Shopping
• Driving
• Going to the cinema
• Going to restaurants
• Getting really into a thing and hyperfocusing on it for hours
• Staying up late
• Gardening. For the first time in my life I now own a garden and a nice one at that. I just look at it.
• Drinking. I could probably stand a bit but it best if I just don’t drink at all.

You get the picture.

So that’s what I’ve been up. I’ll probably write more about this but that’ll do for now. I need to conserve my energy.