I have spina bifida - had a difficult childhood but have been blessed to live a relatively “normal” life over the last 20 years and have ticked off all the usual things - school, uni, marriage. But since the pandemic things took a sharp downward turn. I’ve gone from playing 5-a-side every week when I was 28, to needing a walking stick, to needing crutches, to now being in a wheelchair in the space of 6 years.
It’s not necessarily a terminal decline and if it was just mobility I might be able to manage but it goes deeper than that. The pain, the fatigue, the muscle weakness, getting my socks on feels like running a marathon these days, if I can do it at all.
I’m running on fumes just trying to keep going in this condition, even if things don’t get any worse, there’s no way I can sustain this lifestyle for another decade. More than anything it’s just bleak and eventually it will mentally take me down even if physically I’m still hanging in there.
I hope for the best, but I have to prepare for the worst.