Thursday 20 May 2021

my life on (MS) drugs

Image shows a colourful "Pick n Mix" sweet display, with plastic draws full of unhealthy looking sweets

Looks like I'll be changing medication again. Ho hum. 

This will be my fourth change. Weirdly, I had a reminder of my first MS DMT recently. I stopped taking Rebif when the post injection flu-like symptoms just got too much. With injecting three times a week it was like I felt normal for one day a week. 

And if I forgot to take a painkiller beforehand, then I'd be shivering, sweating and "shaking like a shitting dog". Obviously the side effects from my first COVID vaccine brought all those wonderful, flu-like feelings back. 

So then I went to Tecfidera. Which was fine. Two capsules a day was ok and it led me to getting a taste for peanut butter (chunky) at least. 

But this coincided with me trying the OMS lifestyle and diet. Now, either of these things - or both, or neither - might have led to me having the worst couple of relapses I've ever had. As mentioned previously, Your Mileage May Vary

So since 2017 I've been having Tysabri infusions. And it has been great.

I never forget to take my meds (something which was true for both Rebif and Tecfidera) because I have to go to the hospital. 

And that has always been the main positive - going to the hospital every 4 or 6 weeks means I get some regular time to chat with an MS Nurse.

Plus the infusions have always been a time where I just need to sit and do nothing but listen to music or make notes or read.

I've always been low positive for the JC virus so my neuro has been watchful. I've had regular MRI scans and so far, there hasn't been anything of concern on them. 

But as I'm low positive and have been on it for over three years, he doesn't want me to push it unnecessarily. Fair enough. 

So he gave me a (horribly small) list of options. An injection, a tablet and an infusion. 

The sainted Ms. Jackie Z (two mentions in two blogs!) shared an article with me called "Switch From Tysabri to Moderate-efficacy DMTs Linked to Worse Disability", which says.... well, it does exactly what it says on the tin. The injection and the tablet are lower efficacy than Tysabri, the infusion is the same. 

So it isn't going to take much consideration, is it?!

Having said that, my most recent MRI showed no new activity and no signs of PML. So according to that there's no big rush on to change meds. I will need to change eventually but it's not as dramatic as it could be.

Thursday 6 May 2021

what's in a name?

Blah blah blah, it's been a while. Super busy, yaddah yaddah. 

I've always been a little uncomfortable with calling myself an advocate. A couple of years ago I went to a seminar about independence and MS treatment. I remember that I couldn't bring myself to refer to the stuff I do as "advocacy."  Instead, I just called it "Moaning on the Internet."

But I'm uncomfortable with the A-word because I really do think I only moan about stuff online. It's what Ada Lovelace / Alan Turing / Tim Berners-Lee / Tron would want. And I do recognise that some people really are great advocates. I have nothing but respect for them.

I suppose I've always been a little uncomfortable about making my MS the centre of my life. Just after losing my job I had an interview for a job with one of the UK's major MS charities (c'mon, there're only two - three or four at a stretch). While I was disappointed to be unsuccessful at the time, I can't think of anything worse than working full time on your own health condition. 

As an aside, I was talking to a friend for the first time in ages recently. I was talking about my podcast work and he asked, "Are they all about MS?"

Anyway, I think currently that I'm basically living next door (or at the very least adjacent) to MS. 

And it's super-dull and doesn't make for exciting blog posts. Not when I'm picking up disabilities imperceptibly, like coastal erosion. It all seems normal until you eventually turn around and realise that your living room is in the fucking sea

Image shows a house hanging over a cliff edge
Picture of the author yesterday.
"I'm sure I used to get up these stairs quicker"

Lockdown has multiplied my pre-existing antisocial nature so that hasn't helped. And neither has the fact that I haven't been swimming for over a year. I can't believe how much I miss it. 

Anyway, back to advocacy.

The other week I clocked the fact that somebody' on Instagram referred to themselves as a MS Influencer

I mean, if they're joking that is some next-level darkly cynical shit. 

But if they're not joking.... On what planet is that the right word?


Almost immediately after I published this, I got a message on Twitter from the one and only Jackie Z aka The Queen of GSD:
It's definitely a real word. I have complicated feelings about it but it's usually one used when someone is actually getting paid for their info and experience. It's not the right word but capitalism doesn't know how to pay people in our space without giving them a title that they use for other people who we expect to get paid. AND if we expect to get paid for our experience there has to be value in it for the company and they've deemed "influence" to be the reason worthy of payment

 Thanks for clearing that up, Jackie!

And to be perfectly honest, I've been paid for sharing my experiences in the past - at the seminar I mentioned above, for writing articles for So I don't have a problem with that. At all.

But that word, as Jackie said, isn't quite the right one.