Sunday, 30 July 2017

what is not but could be if

As far I'm concerned, every relapse seems to have its own soundtrack. My 2012 relapse coincided with Little Ms D's first birthday which was emotionally hard for me to take. Because of this, I probably should have avoided coming across the music of Sharon Van Etten, whose first three albums are devastatingly raw and emotional.

Her voice - simultaneously tremulous and defiant, powerful and wounded - got me through the worst of my 2012 relapse, even if at times listening to her albums was the kind of bad idea which you can't help carrying through.

The sharp-eyed amongst you will have noticed that the title of this post comes from yet another Silver Jews song, and they are the band that I've been reaching for most often this time 'round.

Their music is a kind-of shambling, lo-fi type of country - but the skewed romanticism in the lyrics, delivered by the ruined voice of David Berman, are what does it for me, described on their Genius page as offering "an alternative, sometimes inebriated take on the traditional country themes of lost women, whiskey, Nashville, and disillusionment".
Silver Jews
One of my most oft-quoted lyrics (just ask Mrs D) is:
When I go downtown
I always wear a corduroy suit
'Cause it's made of a hundred gutters
That the rain can run right through.
But a lonely man can't make a move
If he can't even bring himself to choose
Between a pair of black and a pair of brown shoes
- Black And Brown Blues
Last week I went back to the QMC for a blood test to see if I have the JC Virus (mentioned last time because of the effect it can have if you take Tysabri).

Is it weird that I'm impressed by the fact that my blood had to be sent off to Denmark to be tested? Super-fancy!

This visit gave me an opportunity to ask the lovely Kate (MS Nurse) a few more questions because it had all got a bit noisy in my head and after reading that MS Trust leaflet I didn't really fancy taking any of the suggested new drugs.

She pointed out that the risk of developing progressive multifocal leukoencephalopathy (PML - or as Mrs D likes to point out, "piss myself laughing") is only 1 in 100,000 if the test comes back negative. If it comes back positive it "only" goes up to 100 in 100,000. And regardless, the MS team monitor people closely and continuously if they go down that route.

She said that Tysabri woud be her recommendation as Alemtuzumab can lead to a higher risk of developing another autoimmune disease - I know that this can be a common issue with any autoimmune disease like MS but why add to the risk?

So even though I can usually find myself unable to choose between my options*, if my bloods come back OK I'll likely be going down the Tysabri route.

* just like like the narrator in the song quoted above - it's weird how things turn out, right?!

I have another MRI next week. Which will be the third week on the trot that I will have visited the QMC (and the fifth time in seven weeks!).

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