Hi! How are you?

“I’m pretty shit to be honest. I’m in the crap gap.

“Sorry, I should explain. It’s that time between my medication wearing off and my next dose or infusion. I get an infusion every six months…

“In hospital, yeah. I have to go to Sheffield for it. I get a day off from work for it.

“Yeah, I know, lucky me. It’s something called Ocrelizumab.

“…Ocrelizumab.

“It’s a bit of a mouthful, isn’t it? There’s someone on YouTube who calls it Ocreloozimab, I’m not sure if he’s doing that deliberately or not. You can also call it Ocrevus. Anyway, it wipes out all the B cells in my immune system and it starts to wear off about a month before the next infusion and I start to feel crap again, like more fatigued, and a bit…

“Sorry, not a bit….

“I can get very depressed and less able to walk, keep my balance, and stand upright, hence the stick – which I need constantly now anyway. My leg spasms really kick in at night as well, ‘scuse the pun.

“Yeah, they spasm every 20 seconds or so, my calf muscles, and they stop me sleeping. I get them every night anyway, they just seem to be a bit worse right now.

“Yeah, it is painful, though it’s not what you might think of as pain. It’s more like an electrical jolt that makes my knee fly up and my foot curl upwards. I take Gabapentin for the spasms, but it doesn’t always work, and also sometimes I take it too late in the evening because I’ve forgotten, so it’s probably my fault as well.

“The crap gap is a pretty miserable time and I’m slap bang in the middle of it.

“Yeah, it is my birthday next week.

“Thank you! Ha! Sod’s Law, eh?

“No, I don’t think the doctors came up with the term ‘crap gap’, I think it’s just MSers like me on social media.

“Yeah MSers – people like me with MS, they’re a pretty cool bunch by and large.

“I don’t think my doctors even think the crap gap really exists to be honest – the ones that have heard of it – but then, they don’t have MS and they don’t take the meds do they?

“Anyway, how are you?”

What I really say

“Yeah, I’m OK, soldiering on, you know? How about you, are you OK?”

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: