Yesterday, I had my first community physio appointment and I think it went very well. There were 3 physios, which is more than usual, but one was a student and the other two didn’t know which one would be seeing me the rest of the time, so they both came. They spent a lot of time talking with me and assessing me, as they were here for just over two hours.
What was my first community physio appointment like?
As it was only my first appointment, it was mostly about the physios getting to know me – things like what I usually spend my time doing and what I did before I got sick two years ago (see ‘My life so far’ for more about that). We talked about how the doctors now think I have hypermobile Ehlers-Danlos Syndrome and dysautonomia, and what that means in regard to what they can do for me.
Did they do any exams?
The physios spent a lot of time doing the exams. One of the physios spent more time doing this than the other, as she is the one that will continue to see me. They spent a lot of time assessing my muscles and joints and came to the conclusion that I am definitely hypermobile. I had a Beighton score of 7! (If you don’t know what the Beighton scale is, or need more information, please read this post by the Ehlers-Danlos Society.)
They also found that despite me not doing exercise for a long time, I do still have average muscle mass. This is likely due to me doing dance for 13 years. I feel like I’ve lost a lot of muscle tone, which is probably true, but as I did dance for so long, it was above average, so losing it has brought my muscle mass down to an average level.
They came up with a short-term plan to help my health stay at a regular level. This means that I will be doing very little exercise, but I will hopefully not have to spend so many days resting, as I will not be exerting myself. I will only be doing a maximum of 1,000 steps per day (tracked by my Fitbit) and standing for no longer than 5 minutes a day. I’m also only allowed to do 20 minutes of piano per day and only three days a week. But yes, I can play piano now – my hearing is finally letting me!
I think I will find all of this difficult to do at first, but I won’t be doing too much, so hopefully, I won’t have to have so many rest days. I’ll be doing this for a month, then I will review how I’ve been feeling and I can increase my steps to 1,300 in a month, only if I feel I can handle it. I may have to reduce the time standing and piano, as I have to be able to do those set times every day/week for the whole month. We are just finding out how much my body can tolerate on a regular basis, so we can then work on improving it.
I’m definitely pleased with how my first community physio appointment went. The physio that did most of my assessments is coming back in two months to see how I’m getting on and how we’re going to proceed from there.
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