I think that the pseudo relapse might be one of the cruellest tricks that MS can play on us. A mini exacerbation of all your favourite MS symptoms that lasts for 24 hours.
But what a 24 hours!
There are a lot of colds going 'round at the moment and obviously, I'm not immune. A sleepless night due to coughing and spluttering meant that the following night I woke up feeling like I had locked-in syndrome. Just totally unable to move anything - terrifying.
The following day I was basically immobile. Luckily I'd completed my work for the year but it was scary. Like, I knew it was probably a 24-hour thing, but I didn't know it was a 24-hour thing.
And that's what's so difficult - you find yourself hoping it isn't a full-blown relapse but you know damn well there's nothing you can do to prevent it either way.
Actually, I think the worst thing might be that we put those closest to us through all of this as well.
Because today I woke up feeling a little sub-par but I was able to have a shower and go downstairs on my own.
I'm very thankful, obviously. But God, how irritating!
"Titanium" is a song that Little Ms. D is learning how to play in her guitar lessons. Pleasant enough but a classic "full of sound and fury, signifying nothing"-type song.
I've written about my (initially reluctant) love for Pavement before. And, even though they might be in my top 3 bands of all time, I resisted the lure of this track for ages.
Why?
Because this has become the band's most played song on Spotify. Not because it's particularly good or innovative. But because it fits the algorithm for a particular type of American college guitar pop. So when people are playing something of that ouvre, this is the song that Spotify spits out.
One of my nephews first brought it to my attention as their favourite Pavement songs a couple of years ago. And now Little Ms. D as discovered it through them.
It's a good song. It doesn't rock my world but it's nice to sing along to in the car.
"Oh, Pretty Woman" popped into my head when I was making a sandwich. The filling was Vegan "Chicken".
Make our own version and be plagued by images of Vegan Chicken walking down the street.
Day ?
Vampire Weekend - "Holiday"
Another of my daughter's current favourites. From their seldom-played second album, "Contra".
It's a good song.
Are you picking up that our daughter controls the music in the car? One of her current obsessions is the 'Hatful Of Hollow' version of The Smiths' "Still Ill".
One of my all-time favourites, but I wish she wouldn't kill it with repeat plays.
Yes, we indulge her. But she is awesome.
Day ?
Mary Margaret O'Hara - "When You Know Why You're Happy"
The only 'proper' album by Mary Margaret O'Hara - 1988s "Miss America" - is one of the best albums ever made. FACT.
Well, it's one of my favourites, anyway.
Mary Margaret is the sister of Catherine O'Hara - y'know, the awesome actress from Beetlejuice, numerous Christopher Guest films, and who played the incredible Moira from Schitt's Creek that you watched during the first lockdown.
This is a frequent earworm but it was perhaps inspired here by the fact that the opening bass line has a slight whiff of Seinfeld, which we've been rewatching recently.
"You move much better than you know, not just some jerky to-and-fro"
Day 21 - I know it was because it was this morning!
FULL DISCLOSURE: some of these might have been playing in my insomniac head.
I'm trying to keep Weezer's icky second album from my daughter. Let's dissect:
Oft-referenced obsession with Japanese and half-Japanese female fans (the one in this song is 18)
The album is called "Pinkerton" - Pinkerton is the name of the US naval officer who marries 15-year-old Cio-Cio-San in Madama Butterfly. After their marriage he returns to America and Cio-Cio-San waits for his return, having had his child. When Pinkerton eventually comes back with his American wife, it is only because they have decided to raise the child in the US. Pinkerton refuses to see Cio-Cio-San, and she kills herself.
So it make me a little uncomfortable. From Wikipedia:
Pinkerton is named after the character BF Pinkerton from Madama Butterfly, who marries and then abandons a Japanese woman named Butterfly. Calling him an "asshole American sailor similar to a touring rock star", [Weezer songwriter Rivers] Cuomo felt the character was "the perfect symbol for the part of myself that I am trying to come to terms with on this album".
Am I being too hard on it?
"The Headmaster Ritual" is a Smiths song that I haven't managed to play for my daughter. It's obviously a belter.
Oh yes, FYI Little Miss D. is well aware of the fact that Morrissey is now a loser. She's cool with cognitive dissonance.
And absolutely no idea where that Johnny Cash song came from. The mind is a terrible thing to taste, no?
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!
This is particularly heinous because they're effectively the same song.
Weezer's first "Blue" album was the soundtrack to my final year at University. Played it every morning without fail. Little Ms. D has recently got into it, but I advised her not to go any further into their back catalogue.
A friend made her a playlist of what he considers to be their better post-blue moments. When Little Ms. D heard this she christened it "Disney Rock."
The apple doesn't fall too far from the tree, does it?
The first actual Christmas song of the season. This one by Smokey Robinson and friends has been getting played a lot in our house.
The Beastie Boys are always in heavy-rotation - the album this is from, "Check Your Head", is an all-time Top-10er. RIP MCA.
Look I'm not going to band on [too much] about how much I love Jonathan Richman. Again.
The album this is from - "Jonathan Sings" is a really odd song, as it features really professional and well-recorded musicianship. I got this primarily for "Not Yet Three, to soundtrack a mushy video compilation of Little Ms. D at a time when she was not yet three.
Day 6
The Aislers Set - "Cold Christmas"
A re-entry, from the last time I did this, when it appeared on Day 18.
I still know nothing about this band but it's a belter and livens up any Christmas playlist.
Day 7
"Rockin' Around the Christmas Tree" by Brenda Lee into "O Paul" by Palace Brothers
Two Christmas Country poppets. Brenda Lee has obviously been played in our house but that first Palace Brothers is as unseasonal as they come. No idea where that came from but we LOVED that album when it first came out.
PS nobody mention the Mel (Smith) & Kim (Wilde) version of "Rockin' Around the Christmas Tree", ok?
Day 8
"Ain't No Mountain High Enough" - Marvin Gaye & Tammi Terrell
No words required. Just immaculate.
Day 9
Richard Dawson - "The Hermit"
At 41 minutes long, ordinarily this song alone would count as the best album of the year.
Thankfully the rest of "The Ruby Cord" is also brilliant.
My wife and daughter refuse to let me play it so here it is for you.
From the best album of the 21st Century, "To Pimp A Butterfly". Not my favourite track so I've got no idea why the phrase that I heard upon waking up was "You goat-mouthed mammy f**ker".
Day 11
Deerhoof - "Witchery Glamour Spell"
I hadn't slept that well so - even though I love Deerhoof more than anything - this is further proof that my brain is an arsehole.
Day 12
Radio silence so here is what is officially my current favourite Christmas song.
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 shame" kind of thing. Sad, obviously, but I'm sure even he'd agree that his last years were nothing short of miraculous.
After being diagosed with terminal pancreatic cancer in 2012, he went on a farewell tour and released what was assumed to be his final album. Two years later, an operation to remove a 3kg tumour left him cancer-free, buying him an extra ten years. Crazy.
I don't own any Dr. Feelgood albums but their amphetamine-fuelled take on early tock and R&B was clearly a huge part of what would become Punk. Part of the what was called the British 'pub rock' scene (patronising, much?), theirs was a kind-of back-to-basics reaction to the prog rock excesses of the mid-70s.
There were many tributes to Wilko after his recent death, but this video shared by Steve Albini on Twitter was my favourite.
This is down to the fact that Wilko is playing lead and rhythm guitar at the same time. And he's getting such a precise percussive sound playing just with his fingers.
Also the fact that lead singer Lee Brilleaux is so obviously "chemically stimulated" that he appears to be - to paraphrase Steve Albini's tweet - chewing his teeth to dust.
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 Tecfidera so often that I didn't have time to feel bad but going to Tysabri infusions every four weeks I always felt I was ready for my next dose.
The fact that this didn't alter when I changed to infusions every six weeks didn't really change my thinking. Neither did the fact that when I mentioned this to my neurologist and he told me categorically that it was all in my head.
However…
As I write this I'm currently having my first full dose of Ocrevus. I had my initial two half-doses in November of 2021.
So in total, it has been an eleven months wait.
If the crap gap was real, I'm pretty sure I would've felt dreadful yesterday.
Now the last year has been so uncertain. I've had no idea when or if I'd be getting my next dose of Ocrevus. So I could well have unwittingly programmed my body to power on through because of the uncertainty. If I didn't know when it would happen, how could I feel crap in advance?
The only problem is, I've had this date in the calendar for the past five weeks.
Please know that I fully understand that this is only my own personal experience. And when I've felt the crap gap in the past, I've known that it was real.
But looking at my various DMT timetables over the years that doesn't make sense.
I'm a firm believer in the placebo affect. And just because something isn't physically real, if it feels psychologically real then to all intents and purposes, it is real.
I just think it might be a little less terrifying for anyone newly diagnosed or just starting a DMT to hear something like, "Some people start to feel like they're a little run down immediately before they go in for treatment. But it's nothing to worry about."
As opposed to, "Oh god, I feel absolutely awful before I have my infusion."
Similarly, the second part of that statement is, "But I feel amazing as soon as I've had it."
What if before my first/second infusion I felt like crap, and then I didn't feel any better afterwards? What would that do for how I feel about my DMT and / or my future with MS?
I suppose if the idea of the pre-infusion slump followed by the post-infusion boost makes you feel better, then by all means continue to do you, boo.
But based on twelve years of research, for me personally, it doesn't exist. And I'm cool with that.
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 probably be in the car.
So we parked up nearby, assembled the scooter, and made our way into the pub (actually not the most accesible venue but we made it work). On arriving I saw an old friend from one of my previous freelance marketing jobs, sitting at a table with two people I ddn't know.
After saying hello, he held up his beer and said that he recommended that I try it. Now I'm a bit of a wimp when it comes to beer - I like a nice, light IPA (Indian Pale Ale). What he was recommending looked black and decidedly "heavy."
Without thinking, I said "I'd better not, I'm driving."
And as soon as I said it, I regretted it.
The table exploded as if I'd delivered the punchline to end all punchlines.
Because I was driving! But not in a car! I was driving a mobility scooter! You get it? It's funny 'cos it's true!
One person at the table then said the classic line, "Have you got a license for that?!"
It was all I could do to stop myself telling them all to fuck right off.
Look. I know that I'm possibly a little sensitive about this. A mobility scooter is something that I've fought against for a long time. I've only been out on it locally a handful of times, so I'm building my confidence up slowly.
More to the point, I understand that people get a little awkward around mobility aids and the people using them. So if they get a chance to make a weak joke to 'lighten the mood' they're going to grab it - especially if it's gifted to them by the person using said mobility aid.
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 potentially on the cusp of maybe having my first full dose. Ten months later.
Here's the science bit.
Ocrevus is an immunosuppressant. The good science behind this is MS is a disease where the immune system gets a bit confused and starts to attack itself, primarily the protective sheath (myelin) that covers the nerves in the body, as well as breaching the blood-brain barrier (which leads to scarring on the brain).
So it makes total sense to basically get the immune system to sit down, take a stress pill, and calm the fcuk down.
Well, it turns out that Ocrevus is really good at its job. So good in fact that I've basically not had a fully-functioning immune system all year. Here's a quote from a recent letter from my MS Nurse.
Ocrelizumab reduces the number of particular cells of the immune system responsible for producing antibodies. Individuals receiving ocrelizumab do not seem to produce enough antibodies in response to COVID-19 vaccination which increases their risk of infection.
Because COVID hasn't gone away (despite what some people say), my medical team and I wanted to make sure I get my fourth dose (plus my flu jab) before I let loose the Mighty Immunosuppressor.
After three blood tests at the hospital, my immune cell count has gone from 0.4 to 4.12. So I'm now able to get my next dose of COVID vaccine, followed by my winter flu jab, and then potentially my first full infusion.
Maybe.
Why any doubt? Well before I have my COVID vaccine, I need to do an antibody test. Then on the day of my infusion, I'll do another at the hospital. And I guess that my infusion will only go ahead if my numbers are correct.
I am very glad that I have a medical team that is looking out for me.
But it's times like these that I really bloody miss my regular Tysabri infusions.
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