“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.
I REALLY wanted to take O to the Junior Park Run yesterday. My mind felt totally ready. My body felt a little tired – but – I could feel the dregs of Saturday’s adrenaline still clinging to my body like a limpet, egging me on to do it.
ME/POTS has definitely altered my priorities in life and imposed limitations on my capabilities. However, I am still the same person I always was in terms of personality and lust for life.
Still, something (well, someone) has changed:
… Pete.
“When you first got sick, did you worry I would leave you?”
Pete asked me this recently, when he was in bed with a virus and I was looking after him.
O can’t possibly be starting school. We need more time, because, well … I’m not done making up for the time we lost.
I’d like to say I was shocked by the comments I received in response to my ‘Disability Benefits – End of an Era’ post the other week, but sadly, I wasn’t. I’ve therefore decided to crank the volume up on making your voices heard as well, by quoting (anonymously) some of the things you told me.
I’ve done it! I’ve contributed to the world’s largest genetic study of M.E.
Here, I summarise the bumpy road for our community leading up to this M.E milestone.