vivdunstan

Delighted to manage accordion practice despite neuro disease relapsing majorly. At a similar relapse in 2004 I lost strength on my right side, arms, legs and falling to the right. Essentially a stroke. And 22 years on I'm still often weaker down that side when more tired or during flares. So today it was really nice to see my right hand play accordion well even if I was very light headed!

This was also a really good test of how I'm doing before I speak to my GP soon and we decide what to do extra treatment wise, given how extremely high the inflammation in my brain blood vessels currently is. Meanwhile I enjoy playing French accordion music, including here the polka Martelette.

It's that time of year when I change from my lighter wraparound robe (worn around my pyjamas) to my thicker long dressing gown. I have also this afternoon ordered me some new pairs of bed socks - machine washable, soft and fluffy, and the right length and size. I'm far too frozen in bed, despite an electric blanket and central heating. My nose is also currently cold which is just too much! To be fair I have a long-standing disease of the blood vessels, though it's usually more affecting the blood vessels in my brain, reducing the blood supply there. But peripheral chills can be a problem.

My annual post about Rare Disease Day. A bit more verbose than in some recent years, with lots of links to further thoughts from me about related topics.

I'm just pondering some ideas that I may expand into a full blog post on my academic blog for my musings. I wrote a similar blog post some years ago and it may be a good time for an update.

I'm off Twitter now. My account still exists, and hasn't been closed - I'm reluctant to wipe it or remove the tweets, for historical preservation (haha right, yup in Musk land!) reasons. But I never login, and my latest post says I'm basically off it now.

Facebook is for family and friends. Largely to keep in touch with Martin's close family and also lots of my friends. I also help fellow vasculitis patients from time to time in our Vasculitis UK support group there.

Dreamwidth is for a mix of more fan based posts (e.g. what I'm reading, watching etc, thoughts about Babylon 5) and a place I can vent some more private restricted stuff (including that I can't post wider e.g. on Facebook). Rather a curious mix! But it is working for me. I was on LiveJournal for many years before then.

Mastodon feels like a rather shaggy dog of a social network. I mean that as a compliment. It's rather anarchic and chaotic, but friendly, and I like to post lots of informal things there. It's also a bit of a vent for me. I'm less likely to post serious history stuff there than genealogy things and - and above all probably! - accordion stuff.

I'm newly on Bluesky. I was surprised to find so many familiar faces and friends there. I'm thinking it's probably going to be more somewhere where I engage with fellow academic historians - there are a *lot* of them on there. But my thoughts on that are still evolving. And it will need to open more widely to truly work.

I did try Threads but didn't get on with it - though my account still exists. It doesn't offer as much to me as Instagram and seems more like seeing people interact with famous people rather than wider engagement.

Delighted to have managed 90 minutes practice this morning on my bigger piano accordion. Mainly trying tunes for musicals that I’m going to do new accordion arrangements of. For example I’ve got the full vocal score for Guys and Dolls, and plan to arrange some of the lesser heard (eg skipped in the film version) tunes starting from that sheet music. I also had fun today with a tune specially written for the movie. Played loads of other tunes though, mainly my own arrangements. My right hand control (piano keyboard side) held up throughout the entire 90 minute practice period, from Speechless (live action movie Aladdin) through to Spanish Gypsy Dances at the very end. That is a phenomenally good outcome. I’ve been weaker in that right hand ever since a stroke like huge relapse in 2004, when I was suddenly much weaker down my right side. The French chromatic button accordion learning is another way I am trying to fight that. It’s probably too soon to know if that’s helping. But today’s piano accordion play was the most successful, including right hand keeping working, for many years …

I’ve my 5th Covid vaccine coming up on Wednesday. It is very likely - well almost certain - I will flare neurologically again after it. I have after the previous 4 Covid vaccines. If so that will probably wipe me out almost totally for another 3 months, starting about a week after my vaccine on Wednesday. So this is probably my last week of a bit of respite - a bit cos I’m often waking up late afternoon even in this brief respite phase I’ve been in since the start of April. I may seem bonkers putting myself through this repeatedly with the vaccines. But they could save my life. My neurological flares I can recover from, even if it takes 3 months each time. It is also very likely I will get a 6th Covid vaccine in the autumn ...

10 years ago today I started high dose chemotherapy treatment in hospital. I’d been on daily chemo drugs since 1998. For auto immune disease, not cancer. Here’s something I wrote about chemo and auto immune diseases. May is Vasculitis Awareness Month. https://vivsacademicblog.wordpress.com/2018/08/02/chemotherapy-and-auto-immune-diseases/

Facebook reminded me 10 years ago today I had to stop Thalidomide treatment for my brain disease (it is used rarely with great care) as I showed signs of peripheral neuropathy. I then demanded high dose chemotherapy infusions - helped hugely. A summer of chucking my guts but hey! The consultant had ruled out chemo infusions for fertility and other concerns 14 years before. Facebook’s going to be reminding me of that summer over the coming months! Including proof checking a Scottish Historical Review journal paper one handed hooked up to the chemo IV drip.

Today is #RareDiseaseDay2022 I’ve lived for 27 years with a 1 in a million neurological disease, primary cerebral vasculitis. Here is my blog post about some of the implications of living with a rare disease. #RareDiseaseDay

For #VasculitisAwarenessMonth here’s my blog post about living with an invisible and fluctuating neurological illness. This year is the 25th year since I developed cerebral #vasculitis, then aged just 22.

https://vivsacademicblog.wordpress.com/2018/10/21/dealing-with-an-invisible-and-fluctuating-neurological-illness/