So I've just had my last physiotherapy appointment. I've had 6 appointments over the last 9 months (which is a pace that worked).
I started physio because I wanted to make sure I was doing all I could to prevent any deconditioning from happening, and also because I had back pains from weak muscles. I feel this has been achieved.
What I got out of trying physiotherapy:
- new exercises to try specific to my situation
- a lot of encouragement
- someone to periodically check in with, to help me strengthen my physical activity, and to give me the space to think more about my exercise routine
- the chance to see if extending how much physical activity I do would make my health better (it didn't)*
- it was also great to see one healthcare practitioner over a period of time to track my overall progress - it was reassuring to have an ongoing relationship with someone who noticed differences in me
- reassurance that I am doing the right things to maintain my muscles as far as I can
- preventing me from being in more pain
*I knew this from the start, but I needed to experience for myself if slowly doing more physical activity would help my health overall. I have found that I can't extend what I'm doing without crashing. I am able to build up slowly over a period of time, but if I go past a certain point, I crash. Then I have to start to build up again. I know where my optimum level for activity is - the best thing for me is to maintain it rather than to push it.
Maintaining a level of exercise that I can do without crashing helps me not get worse - it means I'm not experiencing back pain unless I'm in a crash.
Right now, I am still doing 5-10 mins of yoga twice a day. Sometimes I swap in dancing to a song for 3 mins instead of a yoga session. I have unsuccessfully tried to do more. I went to a local over 50s fitness class but I crashed because of the walk there. One year ago I was doing yoga twice a day but with different exercises. The progression to be able to dance maybe once or twice a week for a short burst is important.
Over the 9 months, I see that I fluctuated a lot in my health, and my ability to move and do exercise is completely ruled by that. Physiotherapy for me was not the way to improve my health - it did not make me better. But I am glad I did it, because it means I feel reassured that I am doing the right things for my body.
My hope is that my symptoms will get better because of the supplements I'm newly taking, and that eventually I will be well enough to extend my physical activity. The physio said that I would be welcome to come back to the service at that point, if I'm facing any new problems. His advice for the future was to express your needs so that your healthcare practitioner will do things your way - say what you won't do because you know it's bad for you. He said next time to pick a physio that specialises in pain (in the absence of one that knows about ME/CFS). But hopefully he'll still be in the service, so I could go back to him.
Over the past year I have not got better, though I have perhaps got better at managing my health. I do think that if I was doing physio in a period when I was getting better anyway, this would have been a completely different project, and I would have seen a lot more change.
I am lucky that I had such an empathetic physiotherapist who was open minded and had heard of ME/CFS before. He told me that knowledge, motivation, and actually engaging in the physical exercises are factors for a good prognosis, and that since I am so motivated, keen to learn, and I engage, I have a good chance of getting better. I don't know if that fits with ME/CFS but it was flattering of him to say that.
I am grateful for the NHS providing this service for free. I think if I hadn't had gone, my body would certainly be more deconditioned now so I would be experiencing more pain.
I started physio because I wanted to make sure I was doing all I could to prevent any deconditioning from happening, and also because I had back pains from weak muscles. I feel this has been achieved.
What I got out of trying physiotherapy:
- new exercises to try specific to my situation
- a lot of encouragement
- someone to periodically check in with, to help me strengthen my physical activity, and to give me the space to think more about my exercise routine
- the chance to see if extending how much physical activity I do would make my health better (it didn't)*
- it was also great to see one healthcare practitioner over a period of time to track my overall progress - it was reassuring to have an ongoing relationship with someone who noticed differences in me
- reassurance that I am doing the right things to maintain my muscles as far as I can
- preventing me from being in more pain
*I knew this from the start, but I needed to experience for myself if slowly doing more physical activity would help my health overall. I have found that I can't extend what I'm doing without crashing. I am able to build up slowly over a period of time, but if I go past a certain point, I crash. Then I have to start to build up again. I know where my optimum level for activity is - the best thing for me is to maintain it rather than to push it.
Maintaining a level of exercise that I can do without crashing helps me not get worse - it means I'm not experiencing back pain unless I'm in a crash.
Right now, I am still doing 5-10 mins of yoga twice a day. Sometimes I swap in dancing to a song for 3 mins instead of a yoga session. I have unsuccessfully tried to do more. I went to a local over 50s fitness class but I crashed because of the walk there. One year ago I was doing yoga twice a day but with different exercises. The progression to be able to dance maybe once or twice a week for a short burst is important.
Over the 9 months, I see that I fluctuated a lot in my health, and my ability to move and do exercise is completely ruled by that. Physiotherapy for me was not the way to improve my health - it did not make me better. But I am glad I did it, because it means I feel reassured that I am doing the right things for my body.
My hope is that my symptoms will get better because of the supplements I'm newly taking, and that eventually I will be well enough to extend my physical activity. The physio said that I would be welcome to come back to the service at that point, if I'm facing any new problems. His advice for the future was to express your needs so that your healthcare practitioner will do things your way - say what you won't do because you know it's bad for you. He said next time to pick a physio that specialises in pain (in the absence of one that knows about ME/CFS). But hopefully he'll still be in the service, so I could go back to him.
Over the past year I have not got better, though I have perhaps got better at managing my health. I do think that if I was doing physio in a period when I was getting better anyway, this would have been a completely different project, and I would have seen a lot more change.
I am lucky that I had such an empathetic physiotherapist who was open minded and had heard of ME/CFS before. He told me that knowledge, motivation, and actually engaging in the physical exercises are factors for a good prognosis, and that since I am so motivated, keen to learn, and I engage, I have a good chance of getting better. I don't know if that fits with ME/CFS but it was flattering of him to say that.
I am grateful for the NHS providing this service for free. I think if I hadn't had gone, my body would certainly be more deconditioned now so I would be experiencing more pain.
