This list will be different for everyone but here is mine at this point in time. It’s interesting to look at this now and think about what I might have thought in the past and what I might think in the future. Muscular dystrophy is a disease that’s different for everyone who has it, even if you have the same types. However, here in my 30s, I’ve decided these are the worst things for me right now, in no particular order.
1. Having to make special arrangements for concert tickets and sporting events.
2. Not being able to rent regular (and cheaper!) vehicles when on vacation.
3. Not being able to go on some rides at amusement parks.
4. Difficulty getting in/out of pools and hot tubs.
5. Having to pee sitting down.
6. Changing clothes.
7. Having to pay extra for things like furniture delivery or close parking.
8. Having to rely on batteries to get around.
Okay so I only got to eight. Making this list might have been much easier ten, even twenty years ago. However now I look at it and it’s short. It’s full of minor things. It’s funny how the minor things are the hardest to get over. Why? Because they’re real and they’re now.
Some people might fill their list with items concerning the future. My list might have contained those items if I made it ten years ago. However I have learned not to worry about the future. Sure, I hope I am planning for it, but I don’t worry about it.
Otherwise this list would be full of depressing things. But look — it’s got lots of fun-related items on it, so I must be doing something right if I am running into these hurdles!