Wednesday, 24 March 2021

up, up and away?

First off, I know there was a big one-year anniversary yesterday. This post is about something else. And I know that my privilege is that the past year has left my family and I mostly unscathed. 


Three years ago today, myself and Mrs D nervously made our way to Philadelphia for a one-and-a-half day conference. Our first time travelling with my wheelchair, and our first time in years travelling just the two of us, even now it seems mad. But it was so needed. 

December 2016: I lost my job and gain a whole mess of financial insecurity. Also at this point I was finishing the first of two failed PIP applications. Good times. 

January to June 2017: I begin engaging with the U.K.'s Kafka-esque benefits system. Dispiriting, especially when combined with applying for many jobs. I eventually got a short term marketing consultancy position. When this ended in June I ran headfirst into two back-to-back relapses, with two separate courses of steroids. As I'm recovering I have my first face-to-face PIP assessment. I think it went well. It did not, and in July my application was turned down. 

August 2017 to January 2018: I reapplied for PIP alongside applying for a number of different jobs. None of these applications were successful, and I was turned down for PIP in January 2018. We then began the appeal process. 

Around this time I got a message from Health Union about their conference in March in Philadelphia. They were offering free accommodation as well as meeting a chunk of our travel costs. For a one-and-a-half day conference. What a mad idea. Who ever thought of going to Philadelphia?

By February we'd received a number of knock backs so it seemed like we had nothing to use. Which is where we came in. 

We flew from Manchester early on Saturday morning, arriving in Philadelphia by lunchtime. A bit of sightseeing on Sunday, a full day at the conference on Monday, finishing at lunchtime on Tuesday, one last wander around, flying overnight and getting back home mid-morning on Wednesday. 

It still seems mad that we did it. But everything seemed to pick up following that short trip. 

In May I got my PIP award (and a couple of years later I reapplied and it was changed into a 10-year settlement). In Philly I met Kathy from FUMS and this obviously led to me following an entirely new career path

But the main thing was, it really gave us a huge boost. It was a crazily short trip, and fairly decadent. But at that point we really had nothing left to lose. 

In this case, it was a reminder that travel really can broaden our minds, and showed what we, personally, could achieve. I'd happily go back there - just as soon as I can think of an aeroplane as anything other than a high speed tube of death, crammed full of germs.

Thursday, 18 February 2021

bill gates listening party today!

"I can't believe that I spent all this money inventing COVID and the vaccine so I could listen to this CRAP..."
(my working title for this blog was "lend us a pfizer" but even I thought that was too much)

So later today I'll be getting my first dose of the COVID vaccine. It's pretty bonkers that it has come around so quickly.

Only last week, I was talking to my MS Nurse about when I would be getting the vaccine. I'd noticed that some of my virtual MS friends had already had theirs. 

It turned out that this was to do with the different medication we were on - Tysabri is one of the few MS DMTs which modulates the immune system, rather than suppressing it. So it makes me Clinically Vulnerable, rather than Clinically Extremely Vulnerable. 

Good to know!

So I settled myself in for the long wait for Vaccination First Phase Priority Group 6 to roll around - Adults aged 16 to 65 years in an at-risk group.

(Vaccination First Phase Priority Group - great first John Peel session)

Well. Although the UK government is an absolute shit-show, they do seem to have grasped the value in rolling out a vaccine programme at high speed*. So I got a  text yesterday saying that an appointment had been made.

* - the need for speed may be due to a desire to reopen everything ASAP, obviously...

And in a short while I'll be heading to our local Velodrome - I'll let you know how it goes!

SPOILER ALERT: I know loads of people who've already been and it seems to run really well.

Thursday, 24 December 2020

the advent calendar of earworms days 18-24

Day 18

The Aislers Set "Cold Christmas"

A new (although it's fairly old) addition to our Christmas playlist (over 19 hours and going strong). A rather tasty bit of American indie pop. I know nothing about this band.


Day 19

Dead air.


Day 20

Tom Waits "Day After Tomorrow" 

I like to either listen to podcasts or music on my phone while I do the washing up. This was the first song to come up on shuffle today and it damn near broke me. 

I love Tom Waits more than I can possibly say and this is one of the most perfect anti-war songs you'll ever hear. 

Taken from his "challenging" junkyard human-beatbox album Real Gone. It's one of my favourites now but I wasn't keen when it first came out. I got it on vinyl a couple of Christmases ago and for some reason it makes more sense - really bluesy and groovy.


Day 21

Here Come the Double Deckers! theme ("Get On Board")

My brain! 

Here Come the Double Deckers! Was a British children's TV series which revolved around the adventures of seven children whose den was an old red double-decker London bus in a scrap yard. Obviously. 

Another bit of music which plagues my brain, despite the fact that the show aired a few years before I was born. It must have been on repeat for a long time because I had a recording of this theme from when I was at college and making mixtapes for friends. 


Day 22

A-ha "Take on Me" and Guided By Voices "Game of Pricks"

Inexplicable mashup. "Take On Me" is obviously a banger - if you need to dance like you're in the 80s, just make sure you hit the 2nd and 4th beats (the snare beat). If you need to make it more 90s, go for the 1s and 3s. However, regardless of the era, NEVER clap on 1 and 3 - the scourge of TV talent show audiences everywhere. 

There are at least two different versions of "Game of Pricks" but this is my favourite. The other is on Alien Lanes, one of the many albums I purchased this summer. 


Day 23

Franco Godi - "Mr Rossi" theme (aka Viva Happiness)


This is a song that gets heavy rotation in my brain. I don't know why but I find myself singing it at random times. It's a great song.

Mr Rossi was on British TV in the mid-to-late 80s (I think). Episodes usually involved Mr Rossi going on a random adventure with his soppy dog Harold.


Day 24

Talking Heads "Once in a Lifetime"

Prompted by me saying "My God!" this morning. This dystopian mid-life crisis was not quite the positive end to this series that I was expecting. And yet, it somehow seems all too fitting for 2020, which can absolutely get in the bin. 

Have a great festive break, stay safe and I'll be back with more void-yodelling in the New Year. 


Tuesday, 22 December 2020

ms medications roulette

In which I apparently decide to change my medication AGAIN.

An actual fork in the road - from the first Muppet movie
An actual fork in the road - from the first Muppet movie

In the sparsely-populated series of positives from the COVID outbreak, one was my recent annual MS MOT. Ordinarily this involves me getting over to Nottingham to see my neurologist for an at-most 20 minute appointment. Even though it's only short it can wipe me out completely for the reds of the day.

The other week, I had the same appointment over the phone.  We talked about my recent MRI results, my general physical and mental state, and a number of topics that I would probably not have been comfortable mentioning face-to-face.

Obviously another thing I asked about was whether I would be able to take the COVID vaccines in the future. He said that being on Tysabri I should be fine, because it isn't an immunosuppressant. Tysabri is an immunomodulator, that works (here comes the science bit!) by creating a wall that stops white blood cells from getting past the blood-brain barrier and into the central nervous system.

So that was a bit of a relief.

However...

As I might've  mentioned before, I've always been a low-positive on the JC Virus test - this is the virus which can lead to PML. As I've been on Tysabri for over three years now, the risk of developing PML is increased. 

As such, my Neuro advised me to start looking at a change in medication. If there is an increase of my JC virus titres (basically the concentraion of the virus in my blood), this will change from "advice" to a "recommendation".

There are basically three options for me:

  • Gilenya (fingolimod) - a pil which you take once a day. In clinical trials this led to 50% fewer relapses
  • Mavenclad (cladribine) - a pill which is taken. in two treatment courses, twelve months apart, It also reduces the number of relapses by about 50%
  • Ocrevus (ocrelizumab) - an intravenous infusion every six months, it reduces the number of relapses by about 70% - so this is the only option which is as effective as Tysabri

So that's something.

But it turns out that all three of these options are immunosuppressants! Therefore they won't work with the COVID vaccine.

Even better was when I received my standard post-appointment letter from my Neuro in which he basically said that I had decided to change meds. As opposed to what I had thought was the conclusion of our chat - that I was just looking at my options.

What larks!

Thursday, 17 December 2020

the advent calendar of earworms days 9-17

Day 9

Cliff & The Young Ones "Living Doll"

Mostly the "I feel sorry for the elephants line".


Day 10

Nick Drake "Poor Boy" into the theme to Top Cat into the theme to Chorlton and the Wheelies

An audio representation of why my brain is a twat. We bought a new hoover recently and the box is in our hallway. Written on it are the words "small ball", which is why I then had that repeating in my head in a budget gospel style a la Nick Drake.

This then reminded me of a microwavable neck wrap we have. The box says "luxury heatable hot wrap" and I recently amused myself no end by singing that to the theme from Top Cat ("Hot wrap! Luxury heatable hot wrap").

For some reason this sent me along various mental side roads, eventually leading me to remember the first time I ever experienced YouTube. I was at work and we immediately used this amazing technological resource to look for old TV theme tunes. Notably this 1970s classic.

Like I said, my brain is a twat.


Day 11

Del Shannon "Runaway" and The Smiths "William, It Was Really Nothing"

Inexplicable mash-up #5012

"Runaway" is one of Little Ms D's favourite songs (I blame my parents). And I've spoken before about my love of The Smiths. 

Morrissey may well be a racist bell-end - but what a song!


Day 12

Dionne Warwick - various songs

Obviously prompted by the fact that the night before we'd watched a compilation of her performances at the BBC. I've never really considered her before but this programme taught me a couple of things.

  • One - a lot of her songs are stone-cold classics
  • Two - her voice was fantastic


Day 13

Jonathan Richman "I Was Dancing In The Lesbian Bar"

I make no apologies for talking about Jonathan Richman again.

I read recently that the reason why Jojo is so punk rock is because he uses embarrassment as his main weapon - not his own, but the audiences. He basically feels no shame, which is the reason he can do ridiculous performances such as the one below. Is the audience laughing at him? 

Or are they embarrassed by the fact that they will never be as unselfconscious?


It's like something I once read about dance. As anyone who has kids will attest, if any child (from babies and up) hears a song, they just start moving. Then as we grow we're taught not to dance in this natural way. And then as we grow, we need do be taught how to dance all over again.

I haven't used the "cosmic insight (man)" tag for a while!


Day 14

Dean Martin "Let It Snow", Led Zeppelin "Immigrant Song"

An actual, proper Christmas song! And it only took 14 days.

The start of "Immigrant Song" is a fairly regular ear worm around these parts, along with a visual memory of Jack Black singing along with it in "School of Rock".


Day 15

Pavement "Grounded"

A track from my favourite Pavement album, but not a song I've played in ages. Is this the start of Stephen Malkmus trying to transition himself into rock-guitar-god status?


Day 16

Cat Stevens "Can't Keep It In"

The sound of driving around in our first family car to have a tape deck. Cat Stevens was my dad's favourite so I can clearly hear him singing along with Cat's overly-earnest vocal delivery.

Because my dad no longer has a turntable I've now taken ownership of his two albums.


Day 17

Fleetwood Mac "Brown Eyes"

From Tusk, Fleetwood Mac's follow-up to the omnipresent uber-selling Rumours. It was always regarded as a commercial failure, because it "only" sold 4million copies. 

Imagine a record label nowadays being upset by sales of 4million!

I first heard this album during a relapse - I was burning through books so Mrs D went the library and got me the 33 1/3 book about the album. It was just fascinating to read about the bed-hopping bolivia-inhaling madness behind its creation. Especially the creative tensions between the floaty-headscarf-wearing songs of Stevie Nicks and Christine McVie, in comparison to the new-wave leanings of Lindsey Buckingham.

As noted above, my brain is a twat, hence why this morning's ear worm is a Christine McVie song, not one of the cooler songs.

Still, it's a great album - and so is the remake by American alt-rock legends Camper Van Beethoven. So here's a compare and contrast playlist I made of both versions!


Tuesday, 8 December 2020

the advent calendar of earworms days 1-8

Day 1

Rufus Wainwright "Cigarettes and Chocolate Milk"
Rufus Wainwright is one of the many artists who has been providing free live performances this year, with his Quarantunes / Robe Recitals series in the first lockdown. I hadn't listened to him for a few years but some of those solo home performances really blew me away. 

And it looks as though he's starting them up again. So COVID has done at least one good thing. 

Rufus was responsible for my first ever sit-down gig, at Nottingham's Royal Concert Hall sometime in either 2004 or 2005. 

Day 2

Pavement "Painted Soldiers"
Not wanting to overburden the legacy of an obscure band with Beatles references, but Stephen Malkmus was clearly the creative driver of Pavement - the Lennon AND McCartney, if you will. 

Which means that Spiral Stairs aka Scott Kannberg was the George Harrison. Perennially overlooked, his songs were at first just tuneful, route-one, and throwaway. But gradually he stared to hit a rich seam of classic guitar pop. And this song is an absolute belter. Great video, too. 


Nevertheless, it was chucked onto the soundtrack of an obscure film

Once Pavement split up, Spiral Stairs released a solo double album under the name The Preston School of Industry (named after an unused song he wrote for Pavement). The name of this album - "All This Sounds Gas" - is uncannily similar time the name of George Harrison's first post-beatles release, the triple-album "All Things Must Pass"

Day 3

Silence. I could make up something achingly cool and obscure but no

Day 4 

A hellish mash-up of Fleet Foxes "White Winter Hymnal" and "Don't Let Me Down, Gently" by The Wonder Stuff 

I like Fleet Foxes but not this song particularly, which has become an accidental Christmas tune. I've always REALLY hated The Wonder Stuff so I can only assume that my brain was angry at me for the previous day's silence. 

Try to imagine it. Like, really try. It's AWFUL. 

Day 5

David Bowie "Star"
From "The Rise and Fall of Ziggy Stardust and the Spiders from Mars", of course. One of those songs where you can't quite remember it but then you hear it (in your brain) and you remember how amazing it is. 

It's fairly well accepted that everything has been shit since David Bowie died in 2016, right? 

"Just watch me now"

Day 6

More silence. Or at least I can't remember any earworms. And I respect you too much to make this up. 

Day 7

Clap your hands, everybody
If you got what it takes
'Cause I'm Kurtis Blow and I want you to know
That these are the breaks
Fairly late-in-the-day entry for a song which crops up regularly when shuffling on my internal iPod. Featuring a great example of that early hip hop sing-song vocal cadence. 

Day 8

De La Soul "Ring Ring Ring (Ha Ha Hey)"
I didn't really get De La Soul's second album, "De La Soul Is Dead" at the time. I LOVED "3 Feet High and Rising" and I guess I just wanted more of the same, not three guys grumpily dismantling their success.

Plus there are WAY TOO MANY skits on it.

But I went away to university with a tape (!) of a skit-less version of the album and over the years it has become the album of theirs which I play the most. Yes, it's dark and grumpy. Maybe we're all a little dark and grumpy, no?

I saw them play live in Nottingham a couple of years ago. It was like a foul-mouthed pantomime, with the audience being split into sides in a singing competition. Brilliant.

---

Join me again next time to see if I can follow through with this ridiculous conceit! Will I make it? Tune in to find out!

Tuesday, 17 November 2020

adventures with mobility aids (and a fragile ego)

Just before Lockdown 2 came in, we decided to go to a park near where my parents live (and where I grew up). I knew that they had Tramper off-road electric scooters to hire so I called them up. After my previous experiences at National Trust properties, I didn't hold out much hope.

So, imagine my delight when the lady I spoke to told me that, yes, the trampers were available to hire that day. She also expressed dismay when I told her about our previous experiences - "Surely this is a time when everybody should be encouraged to go out?"

I could've hired the scooter on a 'Pay as You Go' basis. But by the time we got there, we'd already decided that I was going to sign up for the annual membership. Especially when we realised that it applied to six different sites across Derbyshire.

After a quick play around with the controls we were off. And no more than 2 minutes along the path I had to manoeuvre through a kissing gate. With a bit of encouragement, I ended up reversing into it and was on my way. It was super-easy to use.

Over the course of 4 hours I covered more ground on that park than I had probably done in over 20 years. And the ground was prett muddy and uneven. 

It was a great day for us all and any concerns I'd had about using an electric scooter were irrelevant.

Long-time visitors to this blog will know that I've struggled ENDLESSLY with the idea of adopting mobility aids - as I've transitioned from one walking stick, to two, to a manual wheelchair. But the idea of electric scooters seemed to loom largest in my mind.

So what changed?

Well, recently on walks with the family, I've felt like a (literal) burden, as family members run themselves into the ground pushing my chair.

This is in no way with regards to how they feel (I hope!). But I keep telling myself that I want to walk as far as I can. And then I find I can't walk very far. So I end up needing someone to push me in my chair, which inevitably reduces our days out. Or - more likely - I'll probably stay home and miss out.

But there's only so much of that I (or those closest to me) can take. And while I might think I'm being thoughtful to Mrs D by not going out with her and Little Ms D, it's really just a bit sad. Plus it's also pretty selfish. Why should Mrs D have sole responsibility for taking our daughter out?

Even so, an electric scooter always seemed like some tragic final stage in my "journey" (ugh). We've talked about it in the abstract and it always seemed too big in my mind.

How it actually felt, though, was totally the opposite. I felt (strangely) less visible on an electric scooter than I have done when I've been pushed around on my regular wheelchair. 

Was this just my own paranoia that people were looking at me as a helpless person to be pitied?

And, in my head, did driving an electric scooter make me more independent?

PLEASE NOTE: this is purely my experience. There is no judgement implied on anyone else's choices.

But I know that it's something I've struggled with - as I said, it seemed to be a much bigger deal in my head than it was in reality.

It was interesting that, when I was driving the scooter, we passed a young woman who was being pushed in a wheelchair. I didn't hear her, but apparently as I was passing she said "I wish I had one of those".

http://www.accessiblederbyshire.org/