I didn’t know what to tag this - events? The event for me is that I suddenly realised I’ve had this disease for 20 years. I wasn’t aware of it for the first six of those, although the signs were there. Even once I was diagnosed, it didn’t make any difference to how I lived my life for the next seven years. Now, I seem to spend a lot of time accomodating the disease (all those medicines, the catheterising, the FES) or having to miss doing things. I can still do the things I really want but there are just tons of things I don’t do any more (secondary school parent teacher evenings, swimming, walking more than 50 metres … but I can live without these things).
I’m really interested to hear how long other people have had the disease and how they are now.