Thursday, 1 December 2022

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!

Friday, 28 October 2022

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.

Thursday, 6 October 2022

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!

Wednesday, 14 September 2022

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.

Tuesday, 19 July 2022

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?

Thursday, 24 March 2022

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.

Monday, 21 March 2022

remembering live music no.5

Nirvana, live in 1991

Nirvana, Shonen Knife, Captain America / Eugenius - Rock City, Nottingham, 3 December 1991

It's been a while since I've posted one of these. And I don't think I'll be heading out for a gig anytime soon. This memory was prompted by an earworm, which in turn was prompted by Little Ms D's current musical obsession. She loves Nevermind (she's a little too young for In Utero - "Daddy, what does 'Rape Me' mean?") and plays it whenever she can. 

So yes. I am old enough to say that I saw Nirvana play live. It's the kind of thing that sometimes impresses people. But less so when I say, "They were alright."

An explanation.

I was listening to something on Radio 4 a few years ago and in a discussion about favourite music, a female panelist came up with the perfect description. I wish I could remember her name because I've been using this line ever since. 

She said that Nirvana didn't change her life. They were just the end of a musical line that she'd been following through the 1980s. And that sums up how I feel about them. When you've seen Pixies and Sonic Youth, and heard Hüsker Dü, Butthole Surfers, Big Black, Killdozer, Mudhoney, etc… they weren't anything Earth shatteringly new. 

Now don't get me wrong, they were a great band, with great songs and a no-doubt charismatic lead singer.

Plus it was really exciting to hear "our music" being played on daytime Radio 1. I actually remember hearing Smells Like Teen Spirit being played in Nottingham's much-missed Selectadisc record shop and being blown away by how good bit sounded. 

And I'm not trying to say that I heard them first. As far as I'm concerned, that honour goes to my old friend Sally-Anne. We swapped tapes and she had all of those early Sub Pop releases and Dope, Guns & Fucking In The Streets compilations. 

So anyway I saw Nirvana. And they were pretty good. Tight and well rehearsed in the way of most American bands. But, because this was over THIRTY YEARS AGO, my memories are pretty scattered. 

  1. I went to this gig on my own. I don't know why nobody else was around or could be arsed but there you go. I bumped into someone who was more a friend of-a-friend, gave him a lift home and he eventually became the singer in my last band. Strange. 
  2. Captain America (the then-current band by Kurt Cobain's favourite musician, Eugene from The Vaselines) had changed their name to Eugenius by the time the gig happened. They didn't think that Marvel would mind. The past really is another country, yes?
  3. Shonen Knife was very kawaii and buzzy and punk-pop-tastic. Too much sugar is bad for you. 
  4. Setlist.FM has got this gig completely wrong, I think. I'm positive that the first song they played was Aneurysm. 
  5. Kurt Cobain played a guitar solo while doing a forward roll. 
  6. Krist Novoselic spent a good deal of the gig throwing his bass into the air. 
  7. Nirvana had a dancer, who it turns out was the drummer in Derby band Bivouac
  8. It felt like they tossed out …Teen Spirit early in the set. 

Weirdly in researching the date for this post (I threw away all my old gig tickets!!), I stumbled on this video report of the gig. I've no memory whatsoever of seeing a film crew there but some of these kids look like yr archetypal gormless Nottingham Rock City types. 

The interview with the band is the classic alternative scene, make-up-some-stuff-and-riff-on-it-to-confuse-the-interviewer situation. But interestingly, when asked about success, they seem to say their role is to point people to all the bands that came before them (from 4.29). 

A few years ago, I went to see Bob Dylan. I was lucky and got Good Bob that night so came into work afterwards saying that I'd never been in the same room as a living legend before. A colleague said, "Ah, but you were in the same room as Kurt Cobain."

To which I replied, "Yes, but he wasn't a living legend until he'd died."

Sad but true?