Myotonic Dystrophy

Things I will miss.

I have myotonic dystrophy. Fact.

It has progressed to such an extent that some activities are now impassable. Fact.

I will miss many of them. Fact.

This is a short list, in no particular order, of activities and actions that I can no longer do but would love to. You only miss it when it’s gone.

• Jumping up and down.
     - I can’t even jump an inch any more, dancing g is out of the question. Even standing for a prolonged amount of time is becoming a challenge
• Running for the bus. Yes really. I would love to be able run full stop.
• Go Skiing. I was really good at skiing once upon a time. I will never hit the slopes again.
• Play football with my son. A total and profound regret that I will never totally get over. There is a feeling of guilt there as well. I am so sorry, son, about that.
• Being pain free. Some days it is not too bad. Sometimes it is almost unbearable. Imagine you’ve just been for a very long run and your muscles ache afterwards. That is kind of what it is like. Everyday.
• Days out at the beach. My wheelchair won’t work on sand. I can’t walk on sand. That activity has now been closed off.

Things I can still do (as of February 1st 2023)

• I can still drive.
     -I have an automatic which is easier.
• I can still travel.
     - In my experience airlines and airports are extremely helpful with disabled passengers.
• I can still talk normally.
     - Some sufferers of Myotonic dystrophy can’t.
• I can still play digital games with my son.
     - For example, Mario Karts.
• I can still make it to shops close by (in my wheelchair).
• I can still dress myself.
     - Thank God. Though buttons can be a bit fiddly sometimes.

These lists are not exhaustive. There are, obviously, more things I and cannot do but these are the ones that spring most readily to mind