Things I will miss.
I have Myotonic Dystrophy. Fact.
It has progressed to such an extent that some activities are now impossible. 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.
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Jumping up and down.
- I can’t even jump an inch any more, dancing is out of the question. Even standing for a prolonged amount of time is becoming a challenge
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Running for the bus.
- Yes really. I would love to be able to run full stop.
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Go skiing.
- I was really good at skiing once upon a time. I will never hit the slopes again.
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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. Every single day.
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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 2026)
- 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. Update: Emirates were a nightmare. Don't use them if you are disabled. Others I have travelled with: BA, Virgin, Icelandair, SAS, KLM all fantastic.
- I can still talk normally.
- Some sufferers of Myotonic dystrophy can’t.
- I can still play digital games with my son.
- For example, Mario Kart.
- I can still make it to shops close by (in my wheelchair).
- I have had a ramp fitted to facilitate this
- I can still dress myself.
- Thank God. Though buttons can be a bit fiddly sometimes.
These lists are not exhaustive. There are, obviously, many more things I can and cannot do but these are the ones that spring most readily to mind.