Hi everyone, I don’t really know how to say in words how I feel… just need to get it out of my head. I was diagnosed at 15 (I’m 23 now) after having 3 really bad relapses in 6 months. Being my parents only daughter I watched them mourn and go through the “loss” of a healthy child to one whose future was uncertain. They are my rock and biggest support but I can’t help but feel a burden to them.
Its been 7 years since my diagnosis and just last week my other half called 999. He thought I was having a stroke. He’s never had to deal with anything quite like this before, he knew of my MS but, like the majority, never took the time to actually read about it. This relapse is pretty bad. I don’t have any sense of taste, I have to close one eye at all times or the double vision is so bad I can’t see. And my balance… well that’s another story. I am currently 220 miles away from him as I recover in my home town with family and as he’s a chef he couldn’t take any time off work.
However, he messaged me last night, something I can’t get out of my head.
“But what if you don’t get better…”
something that’s never crossed my mind before. But now I can’t stop thinking about it. It’s nearly 4am and through the nerve pain and this I just can’t sleep. If I don’t get better I can’t burden him with someone like me. I don’t know a single other person with MS but whenever I mention it to others it’s always the same responses. “Oh I knew someone with MS she’s in a wheelchair now but is doing fine” or “he’s blind now” or even “can’t you die from that?” - always a pleasure to hear…
I dont even even know where I’m going with this post. I just feel so alone despite having the best support around me. I don’t want to burden anyone with my thoughts alongside having to care for me. And I don’t know anyone else in this position hence why I’m posting here. I’m terrified I won’t get better but if I do I’m never taking my vision for granted again.
I think I just need some guidance. Which is why this post is all over the place. I just don’t know what to think anymore.