So it has been a few months since I last blogged - apologies!
The thing is with living with FSHD, my muscles don't appear to change on a day to day basis but when looking back, they have continued to deteriorate over the last few months.
I have had several medical appointments and reviews in the last couple of months including one with Wheelchair services. I now have a light weight, self propelling wheelchair to use. This is mainly for use in the classroom to limit my risk of falling. Thursday was the first time I used it properly for my session and it went ok, although I am going to have to be really organised before I get in my chair each session! I am also using it, to be pushed in, when we want to go somewhere which involves walking further that I can manage comfortably.
Also, on Thursday, after previously failed attempts, I had my application for a blue badge for disabled car parking approved! This will make a big difference when going somewhere in my car and maintaining my independence. I can still manage to go to town by myself as long as I park in the square, use my stick for walking and don't attempt to carry too much shopping! I am very grateful for online shopping and Dennis (our local fruit and veg man) who delivers to our house too!
At my review in December with my rehabilitation team Peter and I were encouraged to think long term about our living arrangements. Adaptations can take a really long time to apply for and be put in place so we need to look at what we might need to do for the future now, whether that be moving house, extending etc. I do find it hard looking ahead as it is unknown - FSHD does not follow a regular pattern of progression and I also know that God can heal me at any time too. Through all of this we continue to be amazed at God's peace, grace and provision for us.
Sue
x
The thing is with living with FSHD, my muscles don't appear to change on a day to day basis but when looking back, they have continued to deteriorate over the last few months.
I have had several medical appointments and reviews in the last couple of months including one with Wheelchair services. I now have a light weight, self propelling wheelchair to use. This is mainly for use in the classroom to limit my risk of falling. Thursday was the first time I used it properly for my session and it went ok, although I am going to have to be really organised before I get in my chair each session! I am also using it, to be pushed in, when we want to go somewhere which involves walking further that I can manage comfortably.
Also, on Thursday, after previously failed attempts, I had my application for a blue badge for disabled car parking approved! This will make a big difference when going somewhere in my car and maintaining my independence. I can still manage to go to town by myself as long as I park in the square, use my stick for walking and don't attempt to carry too much shopping! I am very grateful for online shopping and Dennis (our local fruit and veg man) who delivers to our house too!
At my review in December with my rehabilitation team Peter and I were encouraged to think long term about our living arrangements. Adaptations can take a really long time to apply for and be put in place so we need to look at what we might need to do for the future now, whether that be moving house, extending etc. I do find it hard looking ahead as it is unknown - FSHD does not follow a regular pattern of progression and I also know that God can heal me at any time too. Through all of this we continue to be amazed at God's peace, grace and provision for us.
Sue
x
