Yesterday was a VERY rare day for me. I was almost entirely symptom free. And now, I’m just flabbergasted.
Wheelchairs are great. We all know that. Still, as with most things in life … it’s not all spokey dokeys and rainbows. So, here are six crappy things I never knew until I found myself in a wheelchair for three years.
“All you ever talk about is your health.”
Have any of you had these hurtful words uttered to you? I have … and I’m guessing many of you have too.
Once upon a time, back when my ME/POTS was severe, I used an electric wheelchair on the rare occasions I could leave the house.
This was a truly difficult, no scrap that – I mean fucking awful – decision to make.
Here, I explain why.
It’s that time of year again. And I don’t mean Chris Rea starting his drive home for Christmas at the stroke of midnight on Halloween, Ho-Ho-Ho.
No, I mean every October my ME gets a little worse and I start wracking my brain to figure out why.
“F**k, I don’t feel so good. I really need to sit or lie down. Like, RIGHT NOW.
This is what goes through my head every time I find myself in a situation where I need to have a meaningful conversation whilst standing up.
But … why is that?
“You’re going to be okay. You’re going to be okay. You’re going to be okay.”
“… But, what if I’m not? What then?”
Those are the thoughts racing through my head, as I fight back the tears and terror of never knowing if today will be the day that I relapse.
A few weeks ago, I downloaded the NHS Couch to 5K app. I had this ‘great’ idea that I would ease myself into running – and I was going to fucking ACE it! Unsurprisingly, it didn’t exactly go to plan.
Sometimes it’s just: Nice to wear makeup and straighten my hair.Nice to be out in the fresh air, doing ‘normal’ things.Nice to go on a group play date, and the other mums have zero clue I’ve been in bed crashing for most of the last 3 days.Nice to feel vaguely human again after said crash.Nice…
A few years ago, when my ME/POTS was Severe, I could only dream of doing the things I can now. Still, when it comes to sharing my joys and triumphs on social media … I always feel a bit guilty.