One of the treatments I had the chance to try was hydrotherapy. I’d been referred to rheumatology following a positive ANA blood test, and the consultant I saw was brilliant and wanted to do whatever she could to help me. She referred me to the physiotherapy team based in the rheumatology department and I met up with the head therapist to talk through my symptoms and the problems I was having with movement. She recommended hydrotherapy and talked about graded exercise therapy.
Now, I know that’s a pretty controversial treatment for a whole variety of reasons. I’ve read many stories about people becoming more ill as a result of trying it. But the things the physio was saying made a lot of sense. She didn’t just talk about walking and very slowly increasing the distance or time spent leaving no energy for anything else - she included all the different activities you might want or need to do. She told me to always listen to my body and only increase when I was stable with a level of activity. The activity wasn’t just walking, it was normal things like washing your hair or cooking. It was all about getting the balance right and prioritising important daily tasks over walking or other exercise.
So I agreed to the hydrotherapy – I had 8 sessions, with each session being 2 weeks apart. I didn’t really know what to expect so was pretty nervous about the whole thing, but really needn’t have been. The pool was small, with big steps leading into it at one end and lifting equipment at the other. It was just like getting into a warm bath, just deep enough to almost cover my shoulders. I was given a set of 10 exercises and told to do each one for 1 minute then rest for 2 minutes. It included things like shoulder raises, leg swings and walking across the pool, all whilst in really warm, deep water, with the physios in the pool with their patients. It wasn’t about how many repetitions I could do or having to go at full speed, just to keep going at whatever pace suited me for one minute. It felt great at the time, with each exercise seeming pretty easy in the pool.
But the following day the payback hit. It only lasted a few days, but by the time I had my next session I still hadn’t fully recovered. But the physio was great when I explained how I’d reacted, she reduced the time from a minute to 20 seconds. That worked out perfectly and I was able to do them all and not crash in the days afterwards. That was the best feeling I’d had in a long time, it really felt like progress and I was so grateful to the people who’d helped make it happen.
At each session afterwards we increased the time by 5 or 10 seconds and each time things got a little easier. I had to make sure I had a day of total rest after each session or I’d trigger a crash from over doing things, but so long as I was sensible I could do a little bit more every couple of weeks. By the last session I was able to do each exercise for 50 seconds without crashing which was just so amazing! My favourite part of each session was the end – 10 minutes just floating in the pool, which was so relaxing.
It turns out getting referred for hydrotherapy if you’re a CFS/ME patient in my area is actually really rare. Once I was formally diagnosed the occupational therapist told me most people don’t get that, but I’m so glad I did. It got me moving again and gave me the confidence to keep going, however long it was going to take. I’d really recommend it if you get the chance!