CFS update Jan 2019

It’s a while since I’ve put anything down about living and working with chronic fatigue so I thought a New Year’s post about it would cheer everyone up no end.

I’ve still got it. It’s still a a pain in the arse but the last year hasn’t been all doom and gloom.

Gone wells

Not taking time off for CFS for the whole year was something of an unexpected achievement. There were a couple of points during the year where I was seriously worrying about my performance and when I was going to get time to recuperate. I didn’t manage it in the best possible way but coming out the other end of 2018 without having flattened myself is a win.

The year certainly hasn’t been a grind. I got a chance to do some really cool things which, although tiring, I feel pretty pumped about achieving. Playing in the house band at the UK Methodist conference, presenting at the digital storytelling conference in Greece and a week working at the University of Western Australia are particular highlights.

This wasn’t supposed to go in upside down but since it’s of me and John in Western Australia, this is how it shall stay.

I’ve managed to make space for me time. There’s a few things that I’ve had to drop for lack of energy like running, swimming and cycling. I miss them and am working slowly on re-engaging but it’s a bit of a slog. The main experience of CFS is a narrowing of possibilities with the limited amounts of energy available. What I really didn’t want to happen was to lose all the things I enjoy doing purely to focus on work. I’m pleased to say that family time hasn’t been affected as much as it could have been and I’m doing much more in the way of music.

Me and my “rig” at “Methcon18”

It might sound a little grandiose but maintaining a sense of self has probably helped me to keep work and the rest of my life in balance.

Not gone so well

I’m seeing a physio regulary as part of Newcastle’s fatigue clinic and she’s been great. Being able to talk through the experience is useful – I feel awkward talking to people about CFS, normally. One of the major hurdles she’s trying to help me through is coming to a proper acknowledgement of what CFS means for the future. It’s likely this will go on for a long time and I may never regain what I had before its onset in 2017. I hate that idea but without properly understanding it, it means that I’m not taking my treatment plan seriously. It just becomes a series of boom and busts as I try to force myself to be well again.

I don’t like going on about symptoms but I’ve noticed that some things are getting worse. I lose concentration very easily now, often mid way through conversations or complex tasks so things take forever to complete. Remembering stuff is also a challenge when I’m at my most tired. I worry if people are getting frustrated with me or are just puzzled that I don’t seem all there. Nobody’s telling me that but the anxiety is there.

I feel like a slob. I’m definitely putting on weight. This will sound narcissistic but my skinny frame that was the bane of my adolescent years actually turned out to be something I felt better about in my 30s and was looking forward to maintaining in some sort of shape into my 50s. I’m not weighing myself but I can definitely tell I’m getting a paunch. When I bend over, bits of my abdomen now meet other bits of my abdomen coming in the other direction. That’s new for me.

Looking forward

So much for last year, then. I’m not going to make any resolutions but I think it’s important to have things to look forward to.

I’ve been invited back to play at the 2019 Methodist conference. This is nice because it means that I mostly didn’t suck last year. Actually, my bass playing improved a great deal thanks to it. It’ll be tough managing the rehearsals and the conference weekend but I’m looking forward to it.

We have a 2 week family holiday lined up in Wales for the summer. There will be splashing around in boats, probably surfing and walks along the Pembrokeshire coast. And plenty of time with my feet up.

I used to do a lot of music tech stuff when I was younger but lost interest and time when our kids arrived on the scene. I’ve used some Christmas money to buy myself a minimal little setup for the office. The only target I’m setting is to tinker.

One of my new toys…

Eat more fruit and less meat

Walk briskly at least once a day

Try out yoga or pilates