I feel (too?) good
It's a Shit Business
by stevedomino
1y ago
Later today I go for a short appointment with the MS Nurses. Not a full MOT as far as I know, just a catch-up.  Obviously this is the first face-to-face meeting with them since I was ill earlier this year. So it'll be interesting at least. Weirdly, last night I finished the book I started reading towards the end of my stay at my parents house. It's a book about Kraftwerk that Mrs D got me for Christmas. It isn't particularly long - I just couldn't focus on reading for the first month, and there are always newspapers and magazines vying for my limited attention. Kraftwerk by Uwe Sch ..read more
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I believe in... miracles?
It's a Shit Business
by stevedomino
1y ago
Over the past couple of weeks I've made a recovery that is nothing short of miraculous. Not 100% back to where I was but maybe 70%.  Four weeks ago I was completely immobile. It took both my parents to get me on the toilet, and in order to avoid accidents I was going to the toilet every 60/90 minutes. Despite that I was wetting the bed up to three times a night.  After I stopped taking Tamiflu, I gradually got more strength back (I say gradually because that's how it felt to me but really, I was improving in the first week). Using a rollator I was able to stand up straight, straighte ..read more
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Another reason to love ocrevus
It's a Shit Business
by stevedomino
1y ago
One thing I forgot to mention from when I spoke to the MS Nurse recently. She effectively said that Ocrevus was the reason why I'd got all of these infections.  I've written in the past about how effective it is as an immunosuppressant, stamping down on my immune response for up to six months following each infusion. Previously this has caused me to delay having Covid vaccines and my annual flu jab, simply because Ocrevus is so good at its job. There's no point in having a vaccine when your body is unable to provide an immune response.  But does this also mean that in the future I'm ..read more
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An overdue update
It's a Shit Business
by stevedomino
1y ago
First things first. Today, just over a week after I finished my course of Tamiflu, I actually walked upstairs for the first time since the last week of December. Perhaps even more importantly, I also made it downstairs safely. When I think about where I was a week ago, it's actually mind-blowing. Tamiflu is an incredibly powerful drug. And the ten day course really knocked me about. But the most upsetting side effect of the flu and Tamiflu  was the fact that I effectively lost control of my bladder. Obviously I was keeping my fluids up and was self-catheterising as well as I could. But ev ..read more
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2022 earworm advent calendar - days 13-21
It's a Shit Business
by stevedomino
1y ago
Well, this isn't going as well as one would hope. To be honest, we've been struck down as a family by illness in the last week, and I've been working desperately to to clear my plate.  And now that my plate is clear I have hit a wall. Cue one night of insomnia and now I feel like utter crap. Here are the sporadic notes from the last week of earworms.    Day 13-15? David Guetta feat Sia - "Titanium" / Pavement - "Harness Your Hopes" / Roy Orbison - "Oh, Pretty Woman" "Titanium" is a song that Little Ms. D is learning how to play in her guitar lessons. Pleasant enough but a classi ..read more
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2022 earworm advent calendar - days 2-12
It's a Shit Business
by stevedomino
1y ago
Yeah, I know, I know. This is harder than it looks y'know... Day 2 ABBA - "Gimme! Gimme! Gimme! (a man after midnight)"   Not my favourite track by the evil Swedish pop geniuses. However, it is the basis of a horribly weak joke that I made up and sent in to the Adam Buxton podcast for inclusion on the annual Adam and Joe Christmas Podcast 2022. Fingers crossed! Day 3 Hideous mental mash-up of Weezer's "Beverly Hills" and "Teenage Dirtbag" by Wheatus This is particularly heinous because they're effectively the same song. Weezer's first "Blue" album was the soundtrack to my final year at ..read more
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2022 earworm advent calendar - day 1
It's a Shit Business
by stevedomino
1y ago
For reasons best known to myself (forcing myself to write something, anything), I've decided to do another earworm advent calendar this year.  The rules Every morning I'll open up a door in my advent calendar (wake up) and look at the picture (make a note of the song that is playing in my head.)  This one's fairly obvious. There've been a number of rock deaths this year but not really of the sort of deaths that send me sobbing to my bed (David's Bowie and Berman, I'm looking at you.) Case in point: when I heard about Wilko Johnson's death, it was definitely more of a "aww, that's a s ..read more
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The crap gap - real or fake?
It's a Shit Business
by stevedomino
1y ago
Hold your horses! I know that for many people with MS who take disease modifying therapies, we can all feel like crap in the period immediately before our next dose. A reminder: The Crap Gap: the period immediately in the lead up to another round of MS medications, particularly infusions, when the patient begins to feel particularly fatigued and "ready for it." Psychosomatic according to some neurologists, it nonetheless feels particularly real to the patient.  When I was injecting myself with Rebif three times a week, I'd always felt like crap on my in-between days. I was taking Tecfider ..read more
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Was it something i said?
It's a Shit Business
by stevedomino
1y ago
So last night I went to the pub with my brother. It's been a while since we\ve been able to meet up - and seeing as I am now fully vaxxed up (COVID and Flu), this seemed like the perfect opportunity. He came over to where I live and because I was feeling a littlebit 'leggy', I decided that I would drive - we are responsible drivers, ok? Don't drink and drive. Anyway - another reason that I drove was because my electric scooter (yes, there's a story to be told about that) lives in the back of our car. Not for any reason other than it would fill our house and the chances are, when I use it, I'll ..read more
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Ocrelizumab: The Mighty Immunosuppressor
It's a Shit Business
by stevedomino
1y ago
picture borrowed from https://www.gene.com/media/product-information/ocrevus - not entirely sure what it means but it looks cool You may remember, way back before the dawn of history, when I had my initial two half-doses of Ocrevus. That would have been November 2021.  Ocrevus (ocrelizumab) is thought to be one of the most effective DMTs. And it's quite appealing because, rather than being a daily / thrice-weekly injection, or a twice-a-day pill, or a monthly infusion, it's delivered through an infusion every six months.  Well, as I write this, in September 2022, I'm potenti ..read more
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