Hello! I’ve been living with MS for 22years - now SPMS - so kind of used to it, though it’s still frustrating, frightening etc etc - I’m sure you know. I’m EDSS 6.5 now and I wondered whether other 6.5 people (still walking, but with difficulty and not far) find the world as irritating as I do. It seems to be designed for two types of people - able bodied or in a wheelchair - and nothing in between. Is it just me?
No, not just you. I’m officially 6.0 but heading for 6.5 realistically. It’s more circumstantial - what type of journey you need to make.
e.g. Was out & about yesterday with my wife. I was driving (auto). Needed a pee and a breakfast so we went to Sainsbury’s but an unfamiliar one. Took about 20 steps then went back for the electric chair (I still have upper body strength). “What if we guess wrong about where the loo is? I might not have time / strength to get to the other end.” Glad we went back as loo was one side and cafe the other. It’s an uncertain world!
Hi Emmy, no of course it’s not you chick!
There are many people whose needs vary from being able to walk one day and not others. MS is like that.
All we can do is our best…and rest is important too.
boudsx
Hi Emmy
I was ‘in between’ for years so understand what you mean. Am in a power chair now. What does EDSS 6.5 mean?
Thank you GCCK, and you’re proving my point - you have to get in a wheelchair to negotiate the world. I don’t have a problem with the world being accessible for wheelchair users, totally in favour, just wish it was easier for those of us not there yet.
Have been on a couple of cruises this year. These ships can be over 300m long and if your cabin is at one end and restaurant / theatre / bar that you want to visit is at the other, the chair becomes my “car”. At home, I step out of the house into my car and assuming I can get close enough, step out at the other end too (chair at the ready if needs be). On board ship, I zoom around in the chair and hop out at either end.
Horses for courses! 