This is my life now
Hydrotherapy (gentle exercise in warm water) is the current focus of my life, and yet I'm only in the pool for a bit under an hour once per week. How does that fill my days?
One of the reasons I took to the pool was to try and retain and preferably regain some form of mobility. Pain has steadily reduced my ability to even walk around, it has long been difficult and damaging to stretch, and I've lost the ability to move smoothly in a range of directions. Extreme fatigue from exercise and the inability to recover have been with me even longer. Really I left it too long to start hydro, but I spent much of last year too sick to care or able to focus on anything other than mountains of pills and what they were doing to me.
Naturally I've received all sorts of "helpful" "advice" regarding exercise over the years (the two elements of that phrase are in separate scare quotes to emphasise the sheer number of unhelpful to aggressive permutations). Exercise just a little bit more, every day, push just a little etc etc. And I've tried, you really have to believe that I've tried. At the time I gave up swimming laps I think I was able to get in one solid session of a kilometre or so, and would then spend the next four days in bed. After about a week I'd try again, with the same result. Eventually I noticed that this pattern wasn't going away. What I'm saying is I'm not afraid of exercise. I like exercise, and the endorphin fairy was always very kind to me. I'm not saying I was a bundle of joy every second I was in the pool or the gym, but it really was rewarding.
So over the years of chronic fatigue I assure you I've tried to keep up as much activity as possible, and in the process have learned my limits, and the increasingly harsh costs of going beyond those limits. It annoys me no end that I can barely do any kind of stretching now, because I literally tear my muscles apart at the tiniest provocation. It hurts while I'm doing it, it hurts afterwards, it never stops hurting.
In deep warm water, however, it doesn't hurt while I'm doing it. By golly that's a gift. At first I abused this gift and really pushed things because I could. This was then rewarded with even more pain on top of the usual in the following fortnight. But I learned. I'm quite good at learning, and I figured out that my shoulders couldn't really take any sort of serious strain in the water, but just being there was good for them and not to push it. Instead I concentrated on my legs and lower back and had a really good session in the pool last week. I was tired, but really felt I'd found the right pace. The next day I was (relatively) energised, and I looked forward to a second session in the pool later in the week. Maybe three!
Then the next day happened. More tired, more sore. The day after, much more tired, much more sore. Another day, much much more tired. Yes, it got worse, and it started to remind me of the end of my regular swimming habit. I could exercise - look at me, I'm doing it right now! - but bizarrely I couldn't bounce back within a sensible timeframe. That's fibro - they call it "inability to recover". It goes with "non-refreshing sleep". Most people take these things for granted, assuming some kind of magical reset after rest.
So this is how doing hydrotherapy once per week consumes my life. On the first opportunity I have the spoons for it, I head to the pool. This involves quite a lot of spoons, because of the driving, changing, getting wet, getting dry and so on. I might feel happy for the next day or so, but tired, so I'll get some low to medium tasks done. But for the next several days I'll be utterly spoonless and pretty much achieve nothing. The next couple of days are spent in spoon hoarding - if I have any I'll use them cautiously, so no big outings. After that the next spoon opportunity goes on the next trip to the pool.
So in a week where I might (if lucky) have enough spoons for one major activity, those will go in the pool. I'll completely lose a big chunk of the week to nothing at all, so things like laundry stack up, ready to consume any medium serves of spoons that come along in subsequent days. There's my energy budget for large and medium activities for the whole week gone. Small doses of spoons get rapidly consumed by the occasional shower, grocery shopping, rock pictures, trips to the letterbox, and cat service. That's where a whole week goes in service of that one little block of time. To be honest, I'm getting a bit bored of the down time.
This is why I'm happiest when I'm in the pool, because that's what it's all for. All of it. In moments of impatience or despair I literally say to myself "This is my life now".
It had better bloody work.