On Saturday, I chose to tell everyone I know that I have MS via the medium of Facebook.
Some of you might find this odd, but I had my reasons for doing this.
I’d spoken to a lot of people about my freaky blindness (at this point not thinking it would result in the diagnosis that I have subsequently got).
A lot of those people had asked questions about whether I got my sight back. I’d told them yes I had it back but no, I’d had no answers and been honest about the tests I was going through and what I was going through them for.
Now I have a diagnosis, whilst I want to continue to be open about my condition, I CANNOT FACE TALKING ABOUT IT ANYMORE!!!! Easier to just get everyone told in one fell swoop.
Additionally, I honestly believe that by keeping it quiet I’m not really facing up to it myself. I’m an open book. I’m a sharer (and historically very much an over sharer although less so as I’ve grown older!)
What I never counted on was such an overwhelming showing of support from people. I was called inspiring. Me?! Inspiring?
I wasn’t open for the sake of sympathy or compliments about my ability to handle my situation. I didn’t do it for attention. I purely did it for me, to get it off my chest and to face reality. That doesn’t stop me feeling so humbled by the amazing support from friends and family, and those people that used to be called friends but I’ve completely lost contact with.
I’m not being strong for to be inspiring. I just don’t see how being any other way will help. I explained to someone the other day,
“It’s not as likely as you might assume that I’ll end up in a wheelchair. But if I spend the next ten years, miserable and worrying about being in a wheelchair, and then actually end up in a wheelchair in ten years time, that’s so perverse. What a waste of my good years.”
Knowing I’ve got such a huge network of support around me is so comforting at a time like this and it really really does help me keep a smile on my face, instead of wallowing and worrying about what the future might hold.
It has made me stop and think though, and there’s some things I need to promise to myself. I felt a little note to myself here would just do the trick. And you, Dear Reader, can hold me to account if you catch me not doing these things…
- Just because everyone thinks I’m being dead strong, doesn’t mean that I can’t have days where I don’t appear so strong. I’m allowed to feel every emotion under the sun at the moment, and the only person not allowing me to do that is me.
- I will stop planning so far ahead and running through life at 100 miles an hour.
- I will start to live each day and really be present (as much as my brain fog allows me that is!), and just take each day as it comes. There is no point in worrying about yesterday, or tomorrow.
- Stop worrying about the things that I can’t control.
- Stop being so bloody hard on myself and beating myself up. No more feeling guilty for not getting things done that can wait until tomorrow. Or the day after. Or the day after that.
- Know that my best is enough. It doesn’t have to be perfect.