A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Monday 21 February 2022

Poison

For the first time in my MS drug taking history, I feel like I'm actually putting something extremely potent into my body.

I realise the box with the huge yellow 'cytotoxic' sticker should have been a bit of a clue, but somehow it doesn't seem to have properly registered until now.

Maybe it's because I've just completed my second treatment week of my second treatment year. And, in theory, that should be it. 

Maybe it's because I need to dig out my irradiated blood details because we're going away for a couple of nights and I need the card just in case.

Maybe it's because things look to be heading back to 'normal' and I can't hide my immune-supressed self in the house for work much longer.

Or maybe it's because I've actually felt quite rough taking the drugs this time round.

The thing with all MS treatments is that it's such a gamble anyway. There's a possibility they'll work, there's an equal chance they won't.

But all the time, we are putting chemicals into our bodies that, if we weren't unlikely enough to have this disease, we wouldn't dream of doing.

Sometimes I can see why people choose not to.

But what if these ones work, you think. What if they do better than the last ones, or the ones before that?

What if I win this time?

It's the thought pattern of a gambler.

And, quite often, that is what taking the treatments is like. A gigantic roll of the dice with your own body.

This time I chose to land on Cladribine.

Next time, who knows. 

But then maybe, just maybe, I won't need to roll again because Cladribine will do it's job. It's pretty important job of killing off those pesky T and B cells before they make their way to my brain and spinal cord.

And if it works, and good heavens, I really hope it does, then Cladribine, not gin, will become my poison of choice.


:: Poison by Alice Cooper




Saturday 5 February 2022

Toxic

Covid finally caught up with the Scrambled household recently.

While we've avoided it for almost two years, it has been seeming inevitable for a while - daughter's class has been affected by Delta (pre-Christmas) and Omicron (post) so the chances of avoiding it have been slim to non-existant.

And when the double line showed up on her test a couple of Sundays ago, it was only a matter of time before we all had matching LFTs.

And so it was. Fortunately, it was mild. Daughter bounced back within a couple of days. Husband and I had what felt like an extremely heavy cold.

My taste and smell went, but seems to be heading back, but my word the tiredness. So a few days off work then a week of dragging myself back through it and here we are.

Being CEV (blimey, the new language we have) I was able to access an infusion of the new antivirals. So into hospital it was for a couple of hours to receive them.

But not before frantic calls to my MS team to check I could actually have them - because, almost unbelievably, I'm in the middle of Cladribine treatment.

Yes - after waiting 16 months for my lymphocytes to struggle back to clearance level and finally getting the drugs - I was taking my last tablet of week one on the day Covid was confirmed in the house.

The timing is soap opera-worthy. As is the fact I took day one of the course EXACTLY 18 years to the day that I was taken into hospital for my first relapse.

But my MS nurse cleared things (in, I have to say, the quickest ever call back I've had) it so onto the infusion I went. Hard to know if it helped, but better to have than not.

So now it's just a case of making sure LFTs remain negative before I start my second week of the drugs that come with cheerfully yellow warning stickers.

Will they work? 

Unknown, but hoping.

:: Toxic by Britney Spears