2022 earworm advent calendar - days 2-12

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 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?

"Teenage Dirtbag" is just pure dreck.

Day 4

Radio silence

 

Day 5

A MEGAMIX of "Christmas Everyday" by Smokey Robinson & The Miracles, "Jimmy James" by Beastie Boys, and "You're the One For Me" by Jonathan Richman & The Modern Lovers

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.

Day 10

Kendrick Lamar - "King Kunta"

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.

Connie Francis – "I'm Gonna Be Warm This Winter" 

2022 earworm advent calendar - day 1

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.

Happy Christmas, one and all!

the crap gap - real or fake?

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.

was it something i said?

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.

But people, please!

Ocrelizumab: The Mighty Immunosuppressor

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 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.

an offer to the healthy but intolerant

I've had so many ideas about blogs to write over the last few months. Some frustrations, some positive experiences, some actual thoughts. 

But whenever I start to think about writing them down, the whole world turns to shit.

War in Ukraine, Boris bloody Johnson, loss of female bodily autonomy, the inexorable rise of the right on a global scale - the list of historically significant events just seems like it will never stop.

And now - in the week when  I genuinely intended to get some writing done - the world is actually on fire. I mean, I know that the theory of the heat death of the universe is a thing. I just never thought I'd be living through it.

And yet again, when the news sources talk about the potential loss of life, who's the last to get on the metaphorical lifeboats? Who's the redshirt?

Yes, it's the aged and those with underlying health conditions.

I mean, it's not as though COVID has ever gone away - over 200,000 dead in the UK, the last I checked. But also, clinging on like a stubborn piece of crap that refuses to shift from the toilet bowl, are the Deniers and the Right-To-Normal-Lifers.

You know, the ones who pop up all over the place to say that, if COVID is as bad as you think (200,000), us people with underlying health conditions should just stay indoors, cowering, while the people of real significance are allowed to go about their lives. They have a life to live, dammit!!

It's the same with the heat. Some wag has already made a crack that it's obviously the snowflakes who will melt in the summer sun. It's just summer! Go back to bed!

Well. You would have to be brain dead to not be worried by the current global fronts. Yes, the weather happens. But this is insane.

It reminds me of the oppressive heat when we were last on holiday in Venice - as an aside, I can't imagine getting into a flying test tube of germs anytime soon. But that weather was too much, even for Italy.

Now there are fires all over Europe so I think we're beyond the realm of regular summer, right?

Anyway, I have an offer for the NORMAL people out there in the UK.

Basically, we'll treat the country as a timeshare. One month on, one month off. Both groups will need to share Christmas, obviously, but I'd even let them have an extra winter month if that might appeal.

In their months they can roam around, maskless and vaccine-free, snogging and shaking hands with gay abandon, coughing in the face of understanding and decent citizenship. We'll leave you to it, as long as all the theatres and cinemas and sporting events are available to stream (because ACCESSIBILITY).

In our months, you can stay indoors. We'll have the choice to go out wearing our masks with pride, maintaining social distance, safe in the knowledge that we won't be called weak or pathetic and that those around us at least understand why we're being careful. 

What do you think?

philly state of mind

One this day four years ago, myself and the divine Mrs D arrived in Philadelphia to attend the HU Connexion 2018 Event. That whole weekend (we flew to the USA for a WEEKEND) seems like it's from another planet. 

1. We boarded an aeroplane
2. We went to another country
3. We stayed in a hotel
4. I spent a day and a half, in a room that was filled with over 100 people from all over the world
5. Not only were these people all clinically extremely vulnerable, but nobody wore a mask
   

Madness!

I know I've spoken about this on more than one occasion the past. In fact, I spoke a little about it on a podcast that I was on recently. 

But talking about it on that episode, it hit me again how very important that short trip was.

We were in a pretty rough place at that time. It was just over a year since I'd lost my job. Since then I'd done a bit of short-term freelance work. And then promptly had the most physically and mentally debilitating relapse of my life. 

At the same point in 2017, I was going through the first of my two attempts to get PIP. I think by early 2018 I'd been turned down for the second time, so we were heading down the tribunal route. 

As well as all this,  I was getting no closer to finding meaningful work. And the month before the conference, Mrs D's employers decided that her job was actually a temporary contract. So that was that. 

The idea of going to Philadelphia had been rumbling under the surface since the start of the year - initially I was thinking about going with my Dad. 

But when we found about Mrs D's job, with everything else that was going on, we just thought sod it. Her last day at work was the Friday, and we flew out early Saturday morning.

And the whole trip gave us a massive boost. We could actually travel on our own, with a wheelchair.

Admittedly we didn't go that far while we were in Philadelphia but still. Baby steps.

Later that year we retuned to Italy (with my wheelchair) for a great holiday. I got my PIP settlement. And I got another temporary marketing contract, which helped to keep the wolf from the door.

Obviously - and perhaps most importantly - I met Kathy from FUMS and Patients Getting Paid in Philadelphia, and through her I now have a job that I love and am actually good at, which I can do from home. 

So yes. It was an important break for us. And because of that, Philly will always have a apecial place in our hearts.