Friday, 13 July 2018

the blogger’s conundrum

What to write when there isn't much going on?

This time last July I had only just returned home from my parents' house, after a second relapse and second dose of steroids. I was just about to begin Cognitive Behavioural Therapy sessions as well as recommencing physiotherapy. Plus I'd just had my first PIP assessment.

Quite a lot has happened since then!
  • CBT was fantastic. I never did put myself in for another round but I don't think there’ll come a time when I won't need to keep working on my mental game. Still many improvements to be made! Mostly to do with the way I handle (or don't) stressful situations. 
  • I started on Tysabri, one of the more intensive MS treatment options. I started writing this during my 11th infusion. I've also had bloods taken for a further JC Virus test. As I mentioned previously, because I recently tested slightly positive I'll always be considered positive now, even though the score can go up and down. 
  • And because of this I've got another MRI coming up soon. My last one showed no physical signs of Progressive multifocal leukoencephalopathy (PML). Which is something. I'd hate to die because of something which I can't even say...
  • I'm still keeping on with my physio - the improvements are incremental but enough to keep me going. 
  • We've been to Philadelphia! Still seems utterly surreal. 
  • We defeated the evil PIP monster. Not to sound overly triumphalist but I am proud - of my family and, yes, me too. That we didn't give up. 
I'm still trying to find work that I can do - or want to do. That's the big challenge now!

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1 comment:

Ms. CrankyPants said...

I have solved the Bloggers' Conundrum! You abandon your blog when there isn't much going on. Or even when there is but you get too lazy to keep it up.

Seriously, I'm glad you're doing well and that you haven't succumbed to laziness.

Ms. C-P