So recently things have definitely been getting more difficult for me. Just before half term I was unwell with a fluey thing followed by sinusitis and didn't really do anything other than sleep and sit for 10 days! Since then getting back to doing even normal things like walking has been noticeably harder. I have been swimming and doing hydrotherapy each week since but again the legs aren't working as well as they were.
Last week I met with my Neuromuscular Care Advisor who is great for talking things through with and works with lots of other people with FSHD too. We discussed lots of things that may help me now and other things that I may need to consider in the future.
I am wearing my splint most days which is definitely helping me not to trip over. I still need to go shoe shopping as I don't really have the ideal footwear for it to go in as I need to buy a bigger size to accommodate the plate too.
I am waiting to hear from the Social Care Occupational Therapists as I have requested them to come and look at putting a grab rail in the bathroom. My current balancing precariously to get in and out of the bath is probably not going to end well!!
We are planning to start sorting out the car situation over the next few weeks...selling mine, finding a good automatic for adaptation and then having hand controls put in.
Tomorrow I am going to see my physio to see how much my muscles have deteriorated since she last tested them.
