Happy New Day of the week!

NB I wrote this about 3 weeks ago and forgot to publish it. Which has been pretty standard for almost all of the posts I’ve written over the last 12 months. Anyway, here goes nothing.

I may have hinted before that I believe that New Year is a load of old bunk. It’s a day in the calendar which is supposed to herald a new year, a new start and a renewed desire to lose weight, get fitter, give up alcohol (or cigarettes or drugs or stealing pens), and make this the Best Year Ever! But then winter continues for a couple more months, the nights are still dark – well, for those of us in the Northern Hemisphere anyway – and it turns out to be the worst possible time to give up any guilty pleasures which are likely to keep you going until Easter.

Here on the sunny little island I call home it has been pretty cold so far this year. Not as cold as Kansas City or Northern Scotland or the Southern Atlantic, but cold by no our standards. I enjoyed the unbridled excitement of being able to active Snow Mode in my little hatchback car this weekend, as well as making a pitiful attempt to ride my bike to the nearest shop without losing any fingers. It turns out that Easter is definitely the best time to start that New Year’s resolution to ride a bike more often.

This particular observation was made even more cruel by the fact that I had my biannual health assessment shortly before Christmas, the outcome of which is that my health has deteriorated further since my last assessment in 2021. Now before I start singing Don’t Cry For Me Argentina so that you can wave handkerchiefs moist with tears in my direction, let me stress this: I’m not dying. I am incapacitated, but to date my life expectancy has not decreased, most of my major organs appear to be functioning – although my brain has seen better days, but I’ve already discussed that at length – and I haven’t even thought about funeral songs.

That last bit, inevitably, is a lie. I’ll be carried aloft into the church accompanied by Ennio Morricone’s L’estasi dell’oro, The Smiths’ Please, Please, Please Let Me Get What I Want will be the soundtrack to a photo montage of the very best photos of your truly – fortunately the song only lasts for 1 minute and 50 seconds – and then a choir of heavenly voices will sing And Can It Be whilst I am transported into the furnace. Unless it’s a Christmas funeral, in which case it will be a toss-up between Gaudete and O Holy Night. It doesn’t matter which one, because I’ll be far too dead to notice.

The assessment didn’t come as a surprise, and it’s helpful in terms of validating why I have been particularly fatigued for the last 11 months or so, but it still isn’t the most cheerful news to read. As I said above, my illness isn’t going to kill me, and being 60% of a functioning human being is better than many people have to deal with. But as a former GP of mine once told me – in a less than cheery moment – fibromyalgia is basically a life sentence.

You live inside a body which feels like a prison more often than not. Getting up in the morning feels like climbing a mountain. Leaving the house is an achievement. Some days I walk to work (no mean feat, I can tell you), sit down at my desk and think to myself “this has been a successful day. I want to lie down in a darkened room now”. Sometimes I need to lie down in a darkened room before I’ve got anywhere near the office. I get very tired, very grumpy, and unpleasantly angry. Sometimes I lose all sense of where I am, what I am doing, and how I got here in the first place. Most days I use a massage gun for about an hour in order to relieve the pain enough to enable me to get to sleep. And then I sleep in a funny position, and at 2am I am back at square one. Our conversation at my assessment largely led to the conclusion that I can work enough to pay the bills, or function outside work, but I can’t do both. I’m not going to lie. It’s pretty depressing.

There’s always a “but” though, and this particular “but” looks like this:

I love my job. When getting to the office in one piece feels like an achievement, it’s always a genuine pleasure to work with people who are kind enough to pretend that they enjoy my company once I get there. Trust me: I work in Compliance – any positive response to my presence in an office is like winning a Golden Ticket. I am finding ways to stay involved in theatre, even if I am not well enough to perform at the moment. I love my family, and they usually tolerate me, which is nice because fibromyalgia is a life sentence for them too. Because my body can’t really tolerate alcohol I am a really cheap date. And the money I used to spend on beer now gets spent on records, which brings me endless hours of joy. I don’t shout at referees anymore whilst watching rugby, because it turns out that it really is just a game after all. I still find myself asking for permission to rest in bed all day if my symptoms are really bad, but fortunately my spouse always says yes. And I can’t really ride a bike anymore, but the cyclo-cross season is just finishing and the road racing season is about to start, so I get to watch other people suffer on bikes instead. Besides, I never looked very good in Lycra anyway.

If people ask me how I am, I still basically say “pretty good” or “yeah, I’m alright” regardless of how I am feeling, but that’s ok. Because I really am. It may be bloody hard work to stay pretty good, or even to be better than mediocre, but it’s worth the effort. The harder you have to work at it, the more rewarding it is when you really feel it. Well, 60% of it anyway.