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.


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".

Friday 30 October 2020

what did you do in the pandemic, daddy? (3)

Here's a Spotify playlist with a track from (almost) all of the albums which I splurged on between March and September 2020.

Warning: some of it contains language.

The final scores on the format doors:

  • CDs: 3
  • Downloads: 7
  • Vinyl Records: 10

Buying records really shouldn't be as expensive as it is - I dread to think how much I've spent.

But it's such a satisfying format to invest in! Although it can be hard to take a chance on an unknown artist. And I really had to think long and hard before I bought anything.

Still love it, though. And it really does sound better (to my ears).

Thursday 29 October 2020

what did you do in the pandemic, daddy? (2)

First part of this nonsense here.

11. Fiona Apple - "Fetch The Bolt Cutters"
Album of the Year 2
I've never listened to her before and had assumed that it wouldn't be my sort of thing. But the reviews it received made me check this out on Spotify when it was released digitally and it blew me away. Great, unglossy vocals, bonkers rhythms, timely lyrics. She's "pissed off, funny and warm", grieving, raging and full of life. Sort of like the ultimate 2020 mindset. And it really doesn't sound like anything else I've heard all year. 

Cover image from Fiona Apple's "Fetch The Bolt Cutters" album

Bought with birthday Norman Records vouchers along with...

12. Laura Marling - "Song For Our Daughter"

LM soundtracked Little Ms D's birth so we haven't really wanted to revisit her work since then. But she is a great artist (triggering memories aside) and I wanted this after hearing her appearance on the Adam Buxton podcast (Now, I love Buckles but she came across a lot better than him - he'd not really done even minimal research). Anyway this is just obviously great.

13. Miles Davis Quintet - "Freedom Jazz Dance: The Bootleg Series, Vol. 5"

Bargain triple heavyweight vinyl? Featuring complete studio reels of Miles Davis' second great quintet working through pieces in exquisite unedited detail? With studio banter? Where do I sign up?!

Cover image from "Freedom Jazz Dance: The Bootleg Vol. 5" by Miles Davis

14. Deerhoof - "Bibidi Babidi Boo"
Free download from Bandcamp of random live and radio sessions. How much Hoof is too much Hoof? No such thing! I've got a fever! And the only prescription is MORE HOOF!

15. Oneness of Juju - "African Rhythms 1970-1982"

Triple vinyl bought direct from Strut Records. Juju play a mix of African rhythms with jazz, classic funk and R'n'B. Came with a free download version of the album which has almost twice as many tracks than are on the vinyl.

Cover of Oneness of Juju - "African Rhythms 1970-1982" 

16. Jonathan Richman - "I, Jonathan"
Ah lovely Jonathan Richman, surely everyone's favourite gentle punk rock 'n' roller. First ever vinyl release of his fourth solo album from 1992, bought with yet more Norman Records birthday vouchers. Includes his brilliant tribute to the Velvet Underground (which sounds nothing like them but also kind-of does) and the classic "I Was Dancing In The Lesbian Bar". Naive? Not a bit of it. Beautiful and soulful.

17. Guided by Voices - "Alien Lanes" - 25th anniversary limited edition swirly multicoloured vinyl
Bought from - where else? - Norman Records. Actually one of the first things I ordered at the start of spring but it wasn't  released until the end of August. GBV were a band which I took a long time to love but now they're one of my all time favourites. And there's a lot to love. Their discography currently stands at 30 studio albums, 19 EPs, 39 singles and more. The actor Paddy Considine was once asked what was the most expensive thing he'd ever bought. He said an original pressing of GBV's fifth album "Propellor". 

Photo of my copy of Guided by Voices - "Alien Lanes" - 25th anniversary limited edition swirly multicoloured vinyl

18.  Roger Nichols & The Small Circle Of Friends - s/t
Because for all my talk of brutal hip hop, Lo-Fi guitar noise and avant jazz, I do have a deep and abiding love of a particular type of 1960s soft psychedelic sunshine pop. With close vocal harmonies. Way back in the early days of borrowing  CDs and burning MP3s, I copied a handful of tracks from this album, borrowed from one of Mrs D's work colleagues. 14 years later I decided I needed to hear the rest of it and got a CD from the Discogs marketplace.

19. Angel Olsen - "Whole New Mess" on limited edition translucent smoke-effect vinyl
As (almost) an earlier version of last year's "All Mirrors", this is way better than it should be. I like the orchestral treatment on much of the 2019 album but I definitely prefer the simple guitar-voice-and-occasional-organ arrangements here. Plus the handful of tracks which didn't make it to the later recorded but first released album are some of my favourites she has ever done.

My copy of Angel Olsen's "Whole New Mess" on limited edition translucent smoke-effect vinyl
20. Deerhoof - "Love-Lore"
Album of the Year 3
Just when I think I can't love them any more they release this, essentially a mixtape which the band performed live in the studio. Available free from their Bandcamp page. Features avant garde compositions, jazz reimagining, Eddy Grant, The B-52s and the theme to Knight Rider.

Wednesday 28 October 2020

what did you do in the pandemic, daddy? (1)

Well I bought a shit ton of music for a start! At an almost Steve-in-his-college-years level. 

Let's Dissect!

1. They Might Be Giants - "Flood" 30th anniversary picture disc LP
So pretty!

Image of Side A of the album "Flood" by They Might Be Giants

2. Polvo - "Today's Active Lifestyles" 25th anniversary vinyl reissue on multi-coloured vinyl

41 minutes of the mathest of all math rock, springy guitars and proggy time signatures. Plus the vinyl is a beautiful thing. Bought from the mighty Norman Records. Sign up to explore their brilliant selection and experience their fantastic customer service here and I'll love you forever.

Picture of the coloured vinyl edition of Polvo's album "Today's Active Lifestyles"

3. Deerhoof - "Halfbird"
4. Deerhoof - "Milk Man"
5. Rattle - "Sequence"
6. clipping. - "There Existed An Addiction To Blood"

These were all bought as downloads in the first Bandcamp Friday - a day when the music retail site waives its fees to ensure that the artists receive as much money as possible during the COVID lockdown. Rattle are from Nottingham and they were brilliant when I saw them supporting Black Midi last year.
clipping. (punctuation artist's own) are a horror rap band. This isn't quite as good as I wanted it to be but still has some cracking tracks on it.
Deerhoof are one of my favourite bands and I took this opportunity to get more of their stuff. "Halfbird" is pretty raw but "Milk Man" is fantastic.
My key early lockdown homeschooling successes were teaching Little Ms D the words to "Birdhouse In Your Soul" and getting her into Deerhoof. Especially this track. #ParentingGoals 

7. Kendrick Lamar "To Pimp A Butterfly" double vinyl set
The best album of the 21st Century so far? I bought this on download pretty much the second it came out but when I had a chance to buy a cheap copy on vinyl (from it would've been daft not to.

8. Run The Jewels - "RTJ4"
Album of the Year 1.
Just amazing, with timeless themes which are still horribly relevant to America today. Run The Jewels always release their albums as free downloads (making their money through merch, physical copies and live performances) but with this one they asked people to donate to organisations protecting the rights of people protesting the police killing of George Floyd and racial injustice in the United States.
I (almost) ended up live-blogging my first listen (during a Tysabri infusion!) on Instagram.

Screengrab on Instagram post dated June 4 2020, showing the cover of the album "RTJ4" by Run The Jewels. Comment reads, "Today’s #tysabri #infusion soundtrack. Fucking hell! This is huge #RunTheJewels #rtj4"

9. LCD Soundsystem - "Electric Lady Sessions"
Solid versions of LCD classics and cheeky covers, recorded live in the iconic studio. Better than the similarly conceived "London Sessions" from a couple of years ago. I bought this on vinyl from but it was regifted to me for my birthday. 

10. Damaged Bug - "Bug On Yonkers"

Picture showing the album sleeve and vinyl record of "Bug On Yonkers" by Damaged Bug
Limited Edition multicoloured vinyl pressing of bizarro outsider art psychedelic skronk-fest from the leader of Thee Oh Sees, who are a band I'm not that fussed about but this is great. Very groovy, loads of keyboards and who doesn't love a band with two drummers?

Find out more about Michael Yonkers here.

Tuesday 20 October 2020

quite reassuring

I got a letter from my neurologist the other day (if you're as old skool as me, your next thought will be, "I opened and read it, it said they were suckers" but I digress). 

My letter said the following:

I am pleased to inform you that brain MRI compared to the previous scan did not reveal any new lesions.

And then:

This is quite reassuring. 

Image description: The words "This is quite reassuring" taken from a letter I received from my neurologist

Quite reassuring?! If we're looking for a two-word summary, I'd probably go for, "Bloody marvellous" or something similar. But maybe that's just me. 

At the very least it means that Tysabri is doing its job (reducing relapses). And all without so much of the MRI-visible side effects (brain infection). If this the most I can hope for, let me have it, yeah?

Ah well, it did make me laugh, mostly because I can totally hear him saying it. Very low-key. 

I told the MS nurses the next time I saw them and they thought it was funny too. This then led on to a discussion about the florid eyebrows sported by all the neuros at the hospital. I think it's a sign that they're so engaged with their work that they don't have time for frivolities such as manscaping. 

I have plenty of time for taking care of my eyebrows. And yet they remain, resolutely, OFF. THE. HOOK.

Tuesday 29 September 2020

song for a future generation

I am tired, I am afraid
My heart is full of dread
"Soldier" by Richard Dawson 
This was the unnecessarily "on the nose" soundtrack to my last #tysabri infusion which was no fun at all. It was so long ago, I'm almost ready to go back for my next one. 

I started writing a blog post during that infusion but it was so whiny and angsty that I decided to shelve it until the moment passed. 

Obviously I'm still waiting. 

In a sense, life is - for everyone - an endless, perpetual NOW. Things change and they stay the same. Rules change, restrictions are lifted but the results are the same. 

Life seems to have returned to how it was in February / March. My sleep has certainly returned to how it was then - sporadic and unsatisying!

A complete lockdown seems inevitable so we're stealing ourselves. We're trying to stay abreast of the developments but also trying to stay sane. Keeping things light for our daughter but preparing for when everything changes again. 

I can't help feeling that there will be some kind of global outbreak of post-traumatic stress if/when this ever ends. Yes, my flippant response to anyone asking me how it has been for us is, "Well, I don't go out that much so no change there". 

But really, the first lockdown came at a time when I'd got a little braver at taking risks. Longtime visitors will know that my self-confidence has taken a battering over the years, as my mobility has gone south.

(This is not a situation which is unique to me, obviously)

But at the end of 2019 and at the start of this year, I had been getting better. At leaving the house, at taking (small, calculated) chances. And in the last month or so I've been made aware that I've reverted to my past bad behaviours. Staying in whenever possible and having mild panic attacks whenever I do leave the house. And freaking out if things don't go to plan. 

The pandemic is an exhausting situation for everyone but surely it has to be particularly bad for anyone living with some kind of chronic illness. Not least because of the fact we're seen as canon fodder or collateral damage. 

And all this is even without considering the utterly terrifying prospect of Long COVID

But at the same time, we've seen that accessibility IS possible. More and more events have been streamed online. Working from home has been normalised. For god's sake, even my mum and dad are doing their grocery shopping online. 

With the emphasis on getting back to normal, going out to work and supporting the economy, are things eventually going to revert to how they were?

Maybe this will be the lasting trauma from COVID for the chronic illness community. The memory that there was a time when events were accessible and remote working was encouraged. A time when the general populace had a little insight into the fears that disabled / chronically ill people have lived with for years.

That your continued good health is not a god given right. That no-one's job is secure. 

After all that, it would be terrible if everything just returned to the way it was before. 

I am tired, I am afraid
My heart is full of hope
"Soldier" by Richard Dawson

Friday 14 August 2020

National Trust and disabled access during COVID-19

This might come across a bit #middleclassproblem but stick with me.

We've been members of the National Trust for years. As parents of a young (and seemingly inexhaustible) child, we're always looking for ways to use up some of her energy. And getting out in the open air is good for us all.  

PLUS there is, at most properties, excellent parking, great toilet facilities and a place to get lunch and a decent cup of tea. Also, in our experience they really seem to "get" accessibility. 

We live pretty much smack bang in the middle of the country so we've got some great places to visit on our doorstep.  

Sudbury Hall can provide a buggy service from the car park to the property. A similar scheme at Calke Abbey can get you right the way across the whole property.

Our nearest National Trust site is Kedleston Hall, which you might recognise from The Duchess

On a visit earlier this year they provided an off-road wheelchair (which was like a regular one but with BMX bike tyres) that by all accounts was a lot easier to push on the short circular walk. It was certainly comfier than my own chair.


(You knew that was coming, right?)

We went to Kedleston last week. Obviously in the light of the Coronavirus pandemic, the hall isn't open and we had to book our slot to have a trip around the park and gardens. 

So far no biggie. Forward planning and preparation are the norm for us.

But when we asked if the off-road chairs were available, we were told no. We kind of expected it but afterwards we couldn't help wondering why?

Yes, we know about the pandemic and the bloody New Normal and all that. But...

Why is disabled access the first thing to go out the window? 

Is it too difficult to wipe things down between uses? Supermarkets seem able to do it.

We'd even be prepared to provide our own Flash wipes

*other antibacterial wipes are available

Like I say, we expected it. And to some extent we accepted it. 

But the edge was taken off our day. And it was exhausting. 

My chair is heavier to push so Mrs D was worn out. Because I knew she was struggling, I forced myself to walk more than I probably should have. Which was severely fatiguing, which in turn made my walking worse, which was distressing for my family to see. 

The worst thing is...

It's not just at Kedleston

The accessibility options at other local sites such as the ones I mentioned above are currently severely curtailed too.

It's enough to make me feel paranoid.

I've already talked about the fact that people with pre-existing conditions during this pandemic are like the red-shirted officers from the original series of Star Trek. We get it, we're disposable. If not a downright annoyance.

This article in today's Guardian by Frances Ryan notes the fact that, during lockdown, with working from home, cultural events and venues being accesible online...

It was frustrating and joyful, obvious and revelatory. The secret was out: the world could be accessible. Inequality was actually a choice.

But now that things are starting to open up, are those of us with access requirements just meant to stay indoors indefinitely? 

Now don't get me wrong. I know this is only the case with regards to our free time and doing things which could benefit our mental health. We should forget about doing THOSE. 

But if it's getting our butts back into work? 

Come out, come out wherever you are!

By the way, I know Judy G had some substance issues (that's putting it mildly), but the description to this clip is, "Dorothy is recognized as a heroin of Munchkin Land".

Dark times.

Friday 31 July 2020

the thing about the heartsick shut-in

This brilliant song by They Might Be Giants was my earworm this morning. It made me laugh, the way that clever, rhythmically precise lyrics can.

And then I really started to pay attention to them.

Renew my subscription
To "Desperate Bellowing Magazine"
It sure does have a familiar ring
You might say I fit the description
Renew my subscription
To "Miserable Freak Show Quarterly"
Every back-number I saw spoke to me
Acknowledging it's my addiction

Although it would be natural to be tired of feeling like a "heartsick-shut-in", nearly five months into the UK's delayed lock-down, in all honestly it hasln't involved massive changes to my everyday life.
  • Still working? Yep*
  • Too much? Possibly
  • Going out regularly? Well, as much as ever (i.e. not so much)
* By the way, the fact that the government has stopped shielding vulnerable people with chronic health conditions and is effectively forcing them back into work makes me sick. I’d hoped that the pandemic would make employers appreciate the value of remote working. I guess I missed a meeting. 

As I mentioned before, I've been getting more regular exercise than I have in years. In fact, I'm still displaying more commitment to the Joe Wicks exercise videos than the man himself. It became part of our home-schooling schedule so we carried on doing weekday mornings even when Joe went part-time. Plus me and Little Ms D did extra sessions on weekends, and we're still going.

Recently there has been a bit of talk about swimming pools reopening. Much as I miss swimming, I can't imagine anything less likely at the moment.

Like a kind of filthy, random stock-pot! Yikes.

On the couple of occasions I've been to the hospital for my Tysabri infusion, when asked the standard question about if I have any alergies, I have said, "Only other people." I really don't have much faith in the British public's much vaunted stock of common sense.

I mean, it's never a good sign when American friends send WhatsApp messages, mocking events such as the terrible scenes at Bournemouth last month. That's right. American people, from AMERICA, think that we're idiots.

A catchphrase of mine and the divine Mrs D's was prompted by a story on our local news programme. This was immediately after the announcement that people could book foreign holidays, a ruling that, in itself, didn't last that long.

I'm sure that, as I write, the official line is that people are being encouraged to book holidays in order to support the tourism industry. However, they should expect not to be able to travel. I'm pretty sure that, had I ever been arsed to finish reading Catch 22, this might make some kind of sense.

Anyway, in the news report that evening, they interviewed a woman who was going towards check-in with her kids. They asked her why she was travelling. She said something along the lines of, "The schools aren't in, and we'd seen that bookings were possible, so we just thought, 'Why not?'"

To which we responded, "Because there's a frigging GLOBAL PANDEMIC!"

So "we just thought, 'Why not?'" has been a recurring joke, whenever another brainfart recommendation has been mooted. Maybe we have a slightly more sensitive attitude towards risk than most people.

I wanna be a much better person
Instead I worsen with every day
But there's a drug whose name I'm not sure of
Which I need more of to feel okay

Read the full lyrics to Renew My Subscription.

Thursday 25 June 2020

remembering live music 4: the missed and the misunderstood

A quick detour from these posts - which could come over as "cooler than thou I WAS THERE" grandstanding - I'm going to talk about a few artists that I either missed or just didn't get at the time.

1. Pavement, Derby Wherehouse, May/June 1992

Yes, this was the band's first ever UK gig. Yes, they were all over the British music press. And yes, this was a hot-shit ticket.

But I only went because a friend of mine from college got a ticket. At the time, I was a right snooty so-and-so who saw them as a complete rip-off of The Fall.

But, y'know, the difference was they wrote HUMMABLE SONGS and seemed to be charming and amusing people.

There was one writer in Melody Maker who at the time called skronk avant-garde guitar manglers Trumans Water the REAL Pavement. Which is a statement I agreed with but which is, in retrospect, so needlessly arsey it's ridiculous.

The gig was packed (ooh look, there's the drummer from The Wedding Present!) plus it was a beautiful sunny evening.

Pavement were ramshackle. And cute. And charming. And their original loose-cannon drummer Gary did handstands and chatted with the crowd.

But I just didn't get it. Even though I can still remember some of the tunes they played that night. Because HUMMABLE SONGS.

At the time I preferred the support act, Jacob's Mouse (no, me neither).

I still listen to Trumans Water. But nowhere near as much as I've listened to Pavement in the years since this gig, right up to the present day.

I even wrote huge sections of my University dissertation about their second album, Crooked Rain, Crooked Rain. TRUE STORY.

2. The Strokes, Sheffield Leadmill, 23 August 2001

Another gig that I was dragged to by friends - Simon and Annabel. This was one of their first UK tours but even though all the influences and references were there, again I JUST DIDN'T GET IT.

Was I threatened by how insanely cool and attractive they were? I wouldn't like to say. But probably, yes. Definitely.

They were supported by The Moldy Peaches, who were cute but annoying after a while. I actually listened to them while writing this post and I really enjoyed them.

I think at the time The Strokes didn't even have that many songs so I think they just played tracks from their forthcoming (?) album. Maybe even in the album order?

God, they were cool.

And looking back now, they were everything I want in a band. Locked-in together, no flash, no gimmicks, chops for days.

About 6 months after this gig - so almost exactly 6 months after everyone else in the world - I borrowed the CD of Is This It from Annabel and finally understood. Now I think that if anyone wants to learn how to play alternative/indie-rock guitar they should just play along with this album. It's all there.

As if to prove a point, I've just spent 15 minutes watching live footage of them from around this time. They was great.

I'd completely forgotten that both Moldy Peaches and The Strokes were tainted by the shadow of 9-11: The Strokes first album came out at the end of August 2001 and featured New York City Cops ("...they ain't too smart"); The Moldy Peaches album actually came out on September 11 2001 and featured the song "NYC's Like a Graveyard" - ouch.

3. Bill Hicks, Sheffield University, 26 November 1992

This one hurts but confession is good for the soul. Also, not music although he had a rock-star attitude.

This gig took place during my first year studying at Sheffield Uni. With my brother I'd devoured Bill Hicks' legendary 1991 comedy set Relentless when it was shown on Channel 4. Politically he was light-years ahead and had a great, no-bullshit persona.

Dreadful hair and glasses, however.

His '92 UK tour was around the time he recorded his Revelations set. At the time The Guardian and various left-wing comedians were all hymning his act with its politically edgy material. It turns out Bill didn't want to be idolised. He also didn't like the idea that people felt they had a handle on him.

So for that recording - in front of an audience of paid-up believers and his peers - he launched into an extended, skin-crawlingly appaling bit which saw him adopt the persona of Pan The Randy Goat Boy.

It's truly horrible. But point made.

Two years later Bill died of pancreatic cancer at the age of 32. His legend has only grown in subsequent years. Some of his political material would be entirely relevant now if you could just change the names.

Truth be told his sexually explicit material would have been his downfall had he survived. I dread to think what he would've made of the #MeToo movement or issues of rights for trans people. And some of his material hasn't aged at all well. But that's comedy, right?

So anyway. On his final UK tour (?), he played down the road from me, at the University where I was studying.

And I didn't go. 

Worse than that, I didn't go because I couldn't be arsed.


Thursday 21 May 2020

remembering live music no.3

LCD Soundsystem, Magna Centre, Rotherham, 13 November 2010


This gig was at a crazy venue - Magna Science Adventure Centre just outside Rotherham. Thankfully all the interactive exhibits were safely away by the time the gig started.

I loved - and I still love - LCD Soundsystem. I wouldn't say they were strictly dance music per se (Mrs D, who is a bit of dance-music officianado, sometimes dismisses them as 'indie dance'). But they're probably as close as I'll get (chip on my shoulder caused by bad experiences at university combined with my own snobbery).

And the Sound of Silver album is one of my all-time faves - a concept album (kind of?) about careening towards middle-age (hmmm, why would this possibly resonate with me?)

So as soon as the tour with Hot Chip was announced - LCDs FINAL tour, no less - I knew I had to get tickets for me and Mrs D. By the time the gig rolled around, she was pregnant with Little Ms D so my brother was more than happy to tag along.

The tour was a co-headlining-deal with the two bands taking turns to headline - on this night, LCD were on first.

I've always been the sort of gig-goer who doesn't like to be too near the front. The only times I've been in the "pit" are Galaxie 500 (which was never going to be too raucous!), Fugazi (politest, most respectful mosh-pit EVER) and this gig.

Now I have pretty short hair. But when the beat kicked in after the intro of Dance Yrself Clean, it was so LOUD that it moved my hair. I remember my brother and I danced our butts off throughout their set.

Yet again, as a live band they were ferociously tight. Even when one of Nancy Whang's antique synths went haywire near the start of the set they kept it going.

And I don't think there's anything better than watching a brilliant drummer. And Pat Mahoney was - if you'll excuse the language - fucking amazing. He was like a frigging machine, just holding it down throughout the set. Evan when James Murphy wandered over to play bits of his kit in a way which must have been off-putting. If not bloody annoying.

I can't argue with this time - it certainly tallies with my memory, anyway. But I can't believe they turfed out All My Friends so early in the set.

Long time visitors to this blog will know that I'm a massively soppy bugger. One of the things which can set me off are songs about home.

Talking Heads' This Must Be the Place (Naive Melody) is a particular killer. Even Crosby, Stills, Nash & Young's Our House can set me off if I'm in the right mood.

So when LCD ended their set with Home - the last track from their final album at one of their final ever UK gigs - it was just perfect.

I mean, I wasn't anywhere near as bad as this guy from the DVD of their FINAL EVER gig at Madison Square Garden in 2011 but it was pretty powerful nonetheless.

It was so good that we didn't stay for all of Hot Chip's set. It just wasn't able to come anywhere near the majesty of LCD Soundsytem going out at the top of their game.

Except they didn't. Because a few short years later they reformed.

And I couldn't even be mad at them, especially not when I saw them perform Call the Police on SNL.

But imagine being by this guy!

At least he was at the MSG gig.

Thursday 14 May 2020

remembering live music no.2

Pixies, Rock City Nottingham, April 25 1989

Picture young Steve, aged 15, attending only his second ever gig, going to see what was at that time his favourite band. Live music after this point was basically ruined for me.

My (older) brother had seen them play the previous year and we'd got tapes of Come on Pilgrim and Surfer Rosa. Obsessed.

Excitement was only increased by their second Peel session (which I taped, obviously) and this awesome appearance on SNUB TV (which we kept on video until the tape wore out) - I remember telling people at school to watch it.

How can people who look so ordinary - square, even - make a sound so wild? Look at their little faces, they look almost embarrassed to be on TV. Kim had only just stopped going by the nom de disque Mrs John Murphy. Couldn't Black Francis get a clean top?

In advance of the release of Doolittle, John Peel was playing a different song every night on his Radio 1 show. I'd even managed to get hold of a one-sided promo record with four songs on it. I was primed and ready to go.

Which is why it's so disappointing that I can remember so little about the gig!
  • They started with "Into The White" which hadn't been released at that point. It had a very literal (and blinding) light show.
  • Early in the set they played the (similarly unreleased) UK Surf version of "Wave of Mutilation" - I was convinced they were playing it so slowly because they were f*cked off - too many cries of "You fat bastard" from the more *excitable* and *refreshed* members of the audience?
  • "No. 13 Baby" was the only song from Doolittle I'd not heard before I got the album the week before this gig. It's still my favourite track on the album. The light show was awesome for the long instrumental coda.
  • And regardless of what says, I have a vivid memory of them playing "Vamos". Joey Santiago playing much of the solo with a beer can as a slide - and I've just remembered he had a teeny tiny guitar amp!
Kim was pretty much the only Pixie to speak to the audience ("Thanks!" and not much else).
Regardless, I do know that they were bloody brilliant. So loud, so incredibly tight and just completely on it.

A few short years later they were hanging out with Bowie and U2, barely speaking to each other and having band promo pictures taken in their sunglasses.

Thursday 7 May 2020

remembering live music no.1

Do people really need another blog about living with MS in the times of COVID-19? Thought not!

Kind-of inspired by those Facebook posts about "10 books / albums / *delete as necessary that made me", I'm going to be posting about the best gigs I ever saw.

Why? Because reasons. But mostly as a reminder of something which none of us will be doing for some while.

Lemonheads, Trent Polytechnic, Nottingham, May 23 1990

The Lemonheads in 1992. Photograph: Ebet Roberts/Redferns
Starting off with a gig which I still maintain is the best I have ever seen. This was in a tiny room just next to the student bar at the old Trent Polytechnic, like a glorified recreation room. It was a glorious summer night and I went with my brother and my first actual girlfriend.

The Lemonheads (or as my gig ticket had it, The Lemon Heads) had recently trimmed down from a fractious five-piece line up to the classic power trio which would go on to record Lovey. At this gig they played stuff that would show up on that album, along with loads of songs from Lick (in my - unreliable - memory they started their set with Mallo Cup). 

They played so long that after a handful of encores Evan Dando said they didn't have any more songs. But the audience wouldn't let them off the stage (the room was so small that they had to push through the front rows to get on and off the stage).

Eventually Evan Dando said (and please remember that I'm paraphrasing based on my aged fading memory so I may have totally misremembered / embellished it all), "I wrote this song today, and after this we've got nothing". He then played a solo version of Ride With Me, still one of my favourite Lemonheads songs.

Like I mentioned earlier, if I ever had to say what was the best gig I ever saw, this was it. It was just a great example of the "simple" pleasure of great songs played well, and the unmistakeable heft of classic power trio. Plus the feeling when you're at a gig where everyone is loving it, and you're all there before a band goes supernova.

"I was there", indeed.

FUN FACT: Lemonheads are also responsible for the worst gig I ever saw. This was in Sheffield on the Car Button Cloth tour with Murph from Dinosaur Jr on drums. This was (I *think*) 1996-7 and Evan was deep into his crack years. Not pretty.

He encored by turning his back on the audience and feeding his guitar back for what seemed like 15 minutes.

Challenging. And more than a little sad.

Thursday 16 April 2020

my superpower is resilience

Recently, there has been a lot of talk about how people with chronic illnesses are uniquely made for life during times such as these.
  • Self-isolation? All over it.
  • Living with medical and health uncertainty? Only for the past 15 years.
  • Dealing with precarious times, when you're unsure how long the status quo is going to last? Well, duh. Where've you been?
Sometimes these posts have been subtitled Welcome to our world. And it's hard not to take some pleasure from this idea. Especially when 'people with underlying health conditions' are viewed (and described) as being only slightly above 'red-shirt-wearing Star Trek characters' in terms of current expected lifespan.
- Don't worry, men. I'll make sure you get a decent funeral
- Which one of us are you talking to?
- Erm...

However, there are better reasons than our wonky genes as to why we might be prepared for living through a pandemic. And I prefer to focus on the fact that we're resilient.

We've had the shit kicked out of us. We've been forced to face up, not only to health challenges but also to being seen as disposable benefit-scrounging wastes of space. And we're still here.

We're used to adapting to whatever is thrown at us. Whatever new indignities our conditions bless us with.

In short order, my own trials include (but are not limited to) increasing reliance on a range of mobility aids and intermittent self-catheterisation (relax girls, I'm married).

We're old masters at getting to our feet when life thinks it has knocked us out.

And we're more than used to coming up with new ways of achieving our goals and dreams when the 'normal' route is no longer open to us.

Our adaptability and hard-won stoicism means we can be bloody tenacious. We know that (as I've quoted before):
We may be powerless to alter certain events, but we remain free to choose our attitude towards them
Other reasons we're ahead of the curve.
  • We loved the NHS even before it was cool and / or mandatory.
  • We've always appreciated delivery drivers, service workers, helpful shop assistants, the kindness of strangers.
  • Online shopping is my only kind of shopping
In other news, I don't know about you but on the whole, everything seems really, weirdly normal.

Me and Mrs D tend to get through the days, trying to make sure Little Miss D is happy, fed, entertained. But even with everything we're doing (or not doing) it all just seems totally normal.

It's only when we sit down at the end of the day to watch our self-prescribed limited news coverage that it hits us that we're living through the scariest, strangest times.

Take it easy out there indoors.

Monday 30 March 2020

old news

So. I got my PIP award. Actually, I got notification the day of my last infusion over two weeks ago. But the world has since gone to hell in a handcart and it just seemed too trite and small to bother writing about.

I got the same award as previously, but this time it's for 10 years. The guy from the Citizens Advice Bureau (who helped me to fill out my form) contacted me to see if I wanted to appeal - when we met he thought that I was entitled to the enhanced rate for both Everyday Living as well as Mobility.

I decided that I didn't want to risk losing the whole thing. Plus I knew by then that some serious shit was in the pipe as far as Coronavirus was concerned. For my own self care I figured that I'd have enough to fight without adding anything extra.

So the whole PIP thing seems like a problem from a more innocent time.

Last week was our first with Little Ms D since UK schools were closed. And although self-isolation is almost second nature to me (as it is for most people living with disabilities / chronic illnesses), it hasn't been without its difficulties.

And that's only bearing in mind logistics of child care, education and getting food (i.e. up until last Saturday, we couldn't). It's also been psychologically tricky to navigate. We're all in the same house, all of the time.

But I guess it's the same all over. And we have friends and family who're all struggling, and - strangely - this makes us all feel better.

However, this virus is bloody scary. Coupled with the fact that the government guidelines continue to change on a daily (sometimes hourly) basis. Also, nobody knows how Covid-19 interacts (or doesn't) with MS medication - things seem to point towards Tysabri being one of the least dangerous options (which is not to say that it's not without risks!) And I did get a call from the MS Nurses recently to double-check that I was coming for my next infusion. So time will tell.

But no matter. We have a new messiah.

Joe Wicks was someone that I'd only heard of in passing but now his P.E. With Joe daily workout is an essential part of our weekdays. Cometh the hour and all that.

Thursday 12 March 2020

social responsibility and hygiene

I started writing this post while sat in what should, by rights, be the safest space in the country. The infusion ward at my local hospital.

If basic hygiene isn't being followed in a room where people are receiving treatment for cancer and respiratory conditions, as well as MS, then we're all going to hell in a handcart.

There's no denying that it has been a weird couple of weeks. At present there doesn't seem to be much happening with Coronavirus in the U.K., apart from people washing their hands. I can't help feeling that a more complete shutdown is only around the corner [see last minute edit below].

I've had the dried and cracked hands of the excessive hand-washer ever since I started self-catheterising. Let's be honest, when you're putting a plastic tube up your junk, you definitely want to be sure that you've got clean hands.

If the only thing that comes out of the Coronavirus pandemic is that people finally get it into their heads that hygiene is for the general good... well, that might be a good thing. As Mrs D said earlier today, maybe people will start listening to actual experts. Imagine that!

I'm currently reading The Death of Truth by Michiko Kakutani. It's a couple of years old but one of its key points - that we're living in a time where every opinion or source of news is viewed as equally valid as the next - still holds true. It's like how racist politicians in the U.K. are regularly given a platform on mainstream TV and news to expound their toxic views because "that's just their opinion".

I'm only two chapters in but it's pretty striking how this sort of postmodern blanket validity, far from being some utopian libertarian ideal, actually plays into the hands of autocratic despots and fascists. Expert opinion can be simply ignored - see also climate change deniers, flat-earthers and anti-vaxxers.

Similar to the anti-vaxxers, I've heard some people saying that Coronavirus won't affect them because they're young with no underlying health conditions. I hope they learn before it's too late that these measures - vaccines, hand washing, self-isolation - only work if we all play along.

It's social responsibility. We all look out for each other. We all play our part.

[edit 12/03/2020 5.28pm] Despite saying that "More families, many more families, are going to lose loved ones before their time", the UK Prime Minister has just announced that he's going to do next to nothing. *slow hand clap*

Friday 7 February 2020

i don't write to waste my time

As a long-time friend of the blog and Person I've Actually Met In Real Life, SwissLet recently invited me to take part on his site. He sporadically logs his earworms and he wondered if I'd like to have a go.

Really? Asking me to blather on about music? The very idea...

So obviously I did it. And I probably went a little bit overboard, meticulously logging the songs which genuinely appeared unbidden on my internal iPod first thing in the morning all week.

If you need some of that in your brain pan, please visit his blog here. My playlist features D'Angelo, Harry Nilsson, Super Furry Animals, Stereolab, Bonny Light Horseman, The Pointer Sisters and - OF COURSE - Killdozer.

Obviously, I LOVED doing this. So much so that I may do it again (whether he wants me to or not).

Friday 31 January 2020


And my PIP form is in! After a couple of weeks of pretty intense activity. To be honest it went in the post last week. But y'know. REAL LIFE.

In the first instance we relied on the same sources as previously - the Benefit Advice Essentials Facebook group and our contact from our local Unemployed Workers Centre. All signs seemed to point towards approaching the form as if it was an entirely new application.

Yes, I've gone through the application process before. And yes I can do it again. But it's no one's idea of a good time, especially when you have to fit it in with your workload, hospital appointments, etc. And the thought of the amount of time it would take was beginning to stress me out.

Now several months ago I had to fill in a Work Capability Assessment form for Universal Credit. Around this time, I was chatting to a young woman in the infusion ward about the many hoops that we had to jump through to get the support we were entitled to. She mentioned that there was someone based at the Nottingham Citizens Advice Bureau whose time was paid for (at least part of the week) by the MS Society.

I never contacted him at the time and it turned out that I got the result I needed off my own back.

But for some reason I never deleted his contact details from my phone. So I arranged to go in and see him to talk about my PIP application.

Although I was outside of his geographical area, he said that he could use his own judgment. And the MS Society would prefer him to use his time to support people with MS wherever possible.

He also said that I should bring my form with the evidence I'd gathered so we could fill it in together.

In our meeting he talked for the first hour about everything from council tax reductions to Universal Credit to aids and adaptations, before we even got onto the subject of PIP.

Same as we did for my last application, he approached the form by looking towards a tribunal, getting it as watertight as possible at this early stage.

I should say that he has had a lot of experience filling in (and appealing) PIP applications. He even said that he was involved with the design of the PIP form. The thing about the reapplication form, the boxes are pretty small. So this guy basically scored through the questions that I wouldn't be answering and used the available space to get as much information down as possible.

I mean, who would even think to do that if they were filling in the form on their own?!

He also advised against the prevailing wisdom that this form should be filled in as if you're writing about your worst days. His argument was that, if you fill a form in saying that [for example] you can't get out of bed due to back pain, and then you turn up a tribunal, it immediately puts the rest of your form under scrutiny.

As well as all of this, he said that the fact I was in a relapse during my first assessment (and I then referenced it in my second application) probably wasn't as helpful as we first assumed. The assessor would judge it on a 3 months back, 8 months forwards basis. By that logic they can assume that I'll make a complete recovery and make a judgement accordingly. Interesting!

After going through all the sections and double checking that I was happy with what he'd written, he said that I could take the form home to send it when I got the last bit of evidence I was waiting for. Or he could send it for me as it stood, with additional evidence (a letter from my neuro) to follow.

Obviously I bit his hand off! And the relief was unbelievable.

So now we wait. Again.

Good luck as always to anybody else going through similar trials and tribulations.