Monday, 23 December 2019

the social model of work

When I started writing this, it was a year to the day that I was chatting with Kathy from FUMS about the fact that she was looking for a new podcast editor. I asked what it might entail, she let me have a go, and the rest is (fairly-uninteresting) history.

However, what is fascinating to me is that at this point last year I didn't really know that a Podcast Editor was even a thing, let alone MY THING.

dignity through work

By the way I make no apologies for talking about work in the majority of my recent posts. I think that work CAN bring a feeling of worth and a sense of dignity.

Personally, when I had my MS diagnosis, I didn't really want to think of myself as being over the hill. And I was lucky enough to be able to work in predominantly full-time positions for over 10 years.

work culture has to change

I know only too well that some people don't have the choice of whether they work or not. But for those that do have a choice, I think that the world of work and employment has to change to accomodate what disabled people and those with chronic health conditions can do.

It goes back a long way to something I learnt a long time ago about the different models of disability. In brief:
The Medical or Individual Model of Disability suggests that the disabled person is the problem


The Social Model of Disability shows that the societal barriers are the problem
And to my mind this applies to the way in which people traditionally view work.

what a way to make a living

The thing is, I don't think traditional work (9 to 5, five days a week, office-based) is physically and/or mentally possible for me anymore. Especially because all my work history has been in the arts where 9 to 5 actually means, "37.5 hours a week, plus weekends, evenings and additional hours are expected, for which no overtime will be payable".

And that's even without the endless flipping meetings! I may even have to hand in my CULTURAL ELITE membership card. #sadface

As I've mentioned before,  this appears to be changing in the US, where some employers have "made [the] hiring of people with disabilities the next front in the effort to diversify workplaces".

Even when I was working freelance on the photography festival earlier this year, any remote working that I did was deemed to not be quite "proper".

Being able to work from home should be more accepted in this day and age, don'tcha think? Especially for those of us with bonus awesome health conditions.
Personally I think working from home allows me to get more done. FULL DISCLOSURE: sometimes I'm even in danger of working more hours than I should.

The big thing for the New Year is cracking being able to fit in some proper consistent exercise, to go along with making my first million.

No biggie!

Thursday, 12 December 2019

the boy in the bubble

Earlier this week marked the third anniversary since I left my previous job. It's pretty mad that it has been so long!

After only a short time I felt that I wouldn't be returning to full-time traditional employment.
It hasn't been easy - as regular visitors to this blog will know. I had to spend quite a long time navigating the benefits system and applying for jobs, on top of applying for PIP (twice) and having the mother all relapses.

It has been pretty trying - to put it mildly. And not just for me but my wider family, especially Mrs & Little Ms D.

However I really do feel that I've turned a corner. I'm working a lot at present and I hope it'll continue!

Obviously there's a really important election taking place today. The last ten years of democracy have been hugely disappointing for me. The Conservative and Lib Dem coalition. A narrow general election win for the Tories. Ten years of austerity. Brexit. Trump.

This might be the most important one yet. For the future of the NHS in particular.

Previously I've been suckered in by what I have seen on social media. I am well aware of the fact that we live in our own echo chambers.

My feeds are filled with people who think the same as me, the same as your own. But I'm trying not to let myself be tricked again.

A friend of mine from university has worked as a corporate lawyer and is a successful businesswoman. She has been clear about her intentions for this election which has been incredibly heartening to see. Just because you are well off doesn't mean you have to stop thinking about other people. And left-of-centre values are not necessarily anti-wealth.

She has been trying to engage with the opinions of others and recently asked the Tory voters on her feed if they could explain to her why they would be voting that way this time. It was a noble idea but people questioned her intention to understand the other sides' motives and got pretty defensive. And people started on about benefit scroungers, magic money trees and the like.

So after biting my tongue for a while I done wrote a thing:
Soapbox alert. I've been following various parts of this thread with great interest and increasing respect for Suzanne in trying to raise the level of debate on this issue.

I'm not interested in niceties or understanding the other side's point of view. I'm a supporter of the policies and values which are aligned with the Labour Party. I'll be voting for them.

I'm a self employed person with a disability. Being disabled is not a lifestyle choice, it's expensive. I've got first hand experience of negotiating the labyrinthine Kafka-esque nightmare of the austerity-era benefit system.

Ever tried applying for PIP? It's demoralising and utterly depressing. Being questioned and doubted in my own home, and being turned down for this benefit after previously having a lifetime award for DLA (SPOILER ALERT: It's a chronic illness, I'm not getting better) almost drove me to suicide.

And I'm one of the lucky ones who has a support network and whose first language is English. People who vote for the Conservative party are effectively saying that they do not care about me or the security of my family, or for anyone else in a similar position.

It's inhuman to assume that Labour policies will encourage people to sponge off the state. And it's arrogant beyond belief.

I was not born disabled, I was diagnosed with MS at the age of 32. This could happen to any of us.

I have continued to work and pay into the system which benefits us all. There but for the grace of god and all that. Look outside your window sometime.
My preference is clear but I don't really care who you vote for. This version of democracy is the only one we've got and I stand by it.

And party allegiances aside, I hope that whoever gets in can do something to stop the UK being so utterly divided.

See you on the other side!

Saturday, 30 November 2019

the blogger's conundrum: an ongoing series

Despite appearances to the contrary, I think about writing something here several times a day.

But... well.

See if you can pick the meat off this lot!

I had an MRI scan recently

But I got into the scanner bang on time for my appointment. And as I mentioned last time, it was almost entirely pleasant.

The only bummer was when I had to redo a section because my legs were spasming all over the place.

My last Tysabri infusion was a bit odd

For some reason I'd been booked onto the system on a day when hey didn't even do infusions. Dramarama.

Except not. Because they got me in and out even quicker than normal. Ok I had to sit in a normal hospital ward with some genuinely ill people.

But still. Hardly the stuff of misery memoirs, right?

I recently had a minor medical procedure

It was nerve-wracking but still. No more than 20 minutes of mild discomfort.

Undoubtedly an odd experience. But MS has given me a higher-than-normal tolerance for weird medical appointments.

Not the sort of content which will get me a book deal. Worst thing is, I've not been able to go swimming for two weeks.

Christ. That's it!

I've had some podcast meetings and enquiries. And it seems to be ticking along quite nicely. Could always do with more, so if you know anyone, get them to get in touch via The Podcasting Editor website.

My MS seems to be behaving itself mostly. Sleep can be hard to come by. And I've been waking up pretty stiff most mornings. But the lack of sleep won't be helping that will it? Or the lack of swimming.

If it's ok with you, I'll try to keep it this dull from now on.

Friday, 25 October 2019

that’s not MY MS...

Parents everywhere will know the "That's Not My..." series of books. If you don't have kids, the pages have different textures and readers go through a process  of elimination - that one's too bumpy, shiny or furry, etc. - until you discover the correct monkey, dinosaur or robot (for example). 

Wow, I sucked the joy out of those sweet little books, right?!

However I've been reminded of them recently.

A couple of years ago I read Jon Ronson's brilliant So You've Been Publicly Shamed. It's all about internet shamings, predominantly on Twitter, where someone speaks out of turn or makes a poorly thought-out joke and, because it doesn't fit in with the accepted view of a particular echo chamber, the other members pile on top of them.

Listen to an abridged version of the book read by Jon Ronson on the BBC.

I picked up on a tweet recently, by someone that I follow.

It seemed pretty innocuous and chimed with my own thinking, so much so that I shared it myself.

However, the original tweet didn't fit so easily with the accepted narrative of a small corner of the Twitter-sphere. Some users picked it apart and got pretty angry. I won't share grabs of their messages, for reasons that will become apparent (and I got permission from Mr S before I started writing this).

Some felt that he was being ableist and didn't understand MS (they could've found out that he has the condition himself). Some reacted as if he was saying that the way they were living with MS was somehow incorrect. Some felt he was basically saying that all the things they were living with weren't that big a deal.

One of the things people are told when they receive an MS diagnosis is that everyone's MS is different. Which is why some people call it a "snowflake" disease - not in the current Trump-presidency alt-right Brexit-era sense of the word.

My initial thinking was that the people responding to the original tweet were denying Mr S' own experiences of living with MS. Plus I've traditionally had a bit of an issue with people who seem to live entirely through the filter of their illness. Perpetually blogging and tweeting about it. Everything was fine before I was diagnosed, everything has been shit ever since, no one understands, no one cares.

My original plan with this blog was to write about how those people had forgotten about the unique nature of MS. About how everyone's "journey" (that bloody word again) was their own. And what did they think the newly-diagnosed would make of these perpetual micro misery-memoirs?

However, I now see that by writing that blog I would be denying them their own experience of living with MS.

Who am I to judge them?

Truth-be-told, my gut instinct is that I agree with Mr S' view. I still don't think it's particularly healthy for people to endlessly repeat the same narrative and have MS as the centre of their being.

But then, I don't think it's massively empowering to (by way of a not-at-all random example) ignore the reality of your increasing mobility issues. Which is exactly what I'm doing currently.

If all the tools of social media had been in existence and so ubiquitous when I was first diagnosed, I can guarantee I would've been using them in exactly the same way that some people do. For God's sake, even an old fart like me has been keeping this very blog going for over 10 years now!

There is a kind of reflexive-perma-moaning which (no matter how understandable) will likely continue to stick in my craw. But I don't have to read it. And if it works for you, more power to you.

It might just be that YOUR MS isn't MY MS.

Tuesday, 8 October 2019

careful what you wish for

Oof. Crazy busy!
  1. I - bizarrely - have a nice and growing number of clients for my podcast business. And I'm getting paid!
  2. I'm still not used to talking about my "clients". or my "business". Weirdness.
  3. Most of these are just editing jobs so far but I also launched a whole podcast and got it onto Apple Podcasts, Spotify, Google, Stitcher...
  4. I'm actually really good at this!
  5. Even though I'm LOVING doing the podcast work, I recently applied for another job. I didn't get it but it was nice to go for an interview and not have EVERYTHING riding on it.
All of this is despite the fact that I officially "have limited capability for work and work-related activity". This is from my recent Work Capability Assessment (WCA), something which I probably should've had for my Universal Credit claim way before now.

The first part of this involved filling out... ANOTHER FORM!

Well, it has been a while.

This one was pretty intense. But once again I used the Benefit Advice Essentials Facebook Group for some advice. And as before it was really helpful.

At first glance I thought I could take a good run at the form. But looking at one of their information sheets, it pointed out two things:
  • Parts of the WCA form are directly related to parts of the PIP form.
  • The Department for Work and Pensions (DWP) could use the information from a WCA form to make decisions on PIP applications.
After reading this, I made sure that anything I wrote on the WCA form didn't contradict anything I'd put in my last PIP application.

I got it done and submitted, then spent a couple of weeks stressing about having to have another face-to-face assessment.

And then I got a letter through the post, saying, as above, that I have limited capability for work. With no need for an assessment.

Which at first seemed like a bit of a result - woo-hoo, etc.

At first.

But then I realised. I hadn't lied on this form. And thinking back, I didn't so much as bend the truth at all on my PIP form.

And then I thought - so maybe I really am that disabled.

Don't get me wrong, it's great that I should get the support I need, especially as I try to establish my new of working.

But nevertheless, it's a bit crap, innit?

(It's that kind of penetrating insight which you keep coming back for, right?)

Wednesday, 28 August 2019

employment, work culture and MS

One of my favourite podcasts is Beyond Today from BBC Radio 4. The idea is that they talk about one topic from the news every weekday - as they put it, they ask one big question about one big subject.

A recent episode was called "Is the way we work bad for us?"

This was prompted by an office-space company called We Work which has a kind-of Utopian vision of the future of work. But some people say that it creates a culture of 'hustle porn' - people needing to be seen to be busy and competitive and be defined by the way that they work.

This episode also looked at how the quest for perfection has infected many aspects of modern work culture, leading to a crisis of burnout among young people.

I really enjoyed this episode of the podcast (to be honest, I enjoy them all) but I did spend a lot of time thinking "Tell me about it!"

my work history

I was diagnosed with MS 14 years ago. At the time I was working full time in arts marketing, something which I managed to keep doing until December 2016.

I don't want to go into how that played out again - my employer was basically pretty understanding about my health (up until the point when they weren't). But eventually it became unfeasible for me to continue.

Like most people with MS the main thing I deal with is fatigue. The act of leaving the house in the morning - making breakfast, washing, shaving, making lunch, travelling into the office - was one of the most exhausting things I'd do each day. Meaning that I could be wiped out even before I'd made it into work.

Even so, when I requested a day a week where I could work from home (something recommended by a Community Occupational Therapist), I was expected to tell my boss exactly what I was doing and what I had achieved on that day. My remote working was viewed with suspicion, despite the fact that I'd been in post for over eight years at this point.

Since leaving that job I've had a handful of short-term contracts but have struggled to maintain any consistent level of employment.

For a recent freelance contract I'd been open about my health during the recruitment process. Even so, I was expected to go into the office on most days, despite the fact that all of my role could've easily been done remotely.

Why is remote working still viewed with suspicion in the U.K.? Particularly as the primacy of an office-based work culture can effectively keep disabled people and those with a chronic illness out of the workforce? Never mind any macho hustling!

the way forward?

Interestingly, friends in America have shared news stories and links to organisations that seem to point to a more realistic path. See THIS LINK for a story about the value some US Businesses are placing on disabled workers and remote working.

It should be fairly standard practice - but in this country at least businesses might talk about social responsibility and reducing their carbon footprint (for example). And it doesn't seem to make a difference to working and recruitment practices.

The people I know who are either disabled or have chronic illnesses don't want to sit at home living off benefits (despite some media portrayals!). I want to support my family and I also want to keep my brain active. But work will have to fit around my illness and hospital appointments.

Kathy at is just about to launch her Patients Getting Paid course, which will help chronically ill people to find legitimate work opportunities that accommodate their health conditions, wherever they are in the world.

A recent FUMS podcast episode was about Chronically Capable, "a platform that strives to connect the chronically ill with meaningful remote work and flexible employers".

This sort of thing is amazing. Why don't we have anything like it in this country?

my (future) glittering career... hopefully

I've really enjoyed the work I've been doing editing the FUMS podcast. And y'know what? I'm really good at it.

Some of the interviews necessarily come with audio issues - dodgy sound quality, even moments where the audio has totally dropped out. I've been able to fix these to the extent that even I can't see where the edit is. I've also started creating additional bits of background music when it's needed.

With that in mind, and with the support of Kathy at FUMS and Jackie (Queen of GSD), I'm currently exploring the idea of working as a Podcast Editor (see the lovely website Jackie designed for me at

If I can make this work for a while it will be perfect for me. So if you know anyone who might need my (very reasonably-priced) help please get in touch!

Friday, 9 August 2019

nights that won't happen

David Berman (photo by Cassie Berman)

Silver Jews are a band that I liked and admired for many years. When they first came out, I was very much a fan of Pavement, with whom they (sporadically) shared band members and a similarly fairly loosey-goosey approach to instrumentation and recording.

But gradually the lyrics got to me. David Berman - who has died suddenly aged 52 - was a poet who wrote songs, rather than a songwriter whose songs came to be seen as poetry.

It was obvious that Berman was a man who struggled with depression and addiction. Yet the words were darkly funny, beautiful, heart-wrenching.

So Silver Jews became a band that I loved, eventually providing an unofficial soundtrack to my 2017 relapse. Long time and eagle-eyed visitors might remember the many posts from this period with titles taken from their songs.

They split up in 2009 in bizarre circumstances. And Berman disappeared from view, aside from a few sightings and rumours of recording sessions.

He resurfaced this year under a new name, Purple Mountains. In the intervening years his battles remained constant and he'd split up from his wife and former band mate Cassie. But the wit was undimmed.

The Purple Mountains album is up there with the best of his work, melodic, mordant, melancholy. But despite the journey the songs travel - through divorce, depression, addiction and grief - it seems to end on a level of acceptance and hope. He even talked in interviews about going on tour.

When I read the news of his passing on Thursday morning it was still a shock. I honestly haven't been as devastated by the death of a stranger since the other DB.

No cause of death has been announced yet. But it's hard not to surmise from the details we "know" about him (who can really know what goes on inside another person?) that - intentionally or otherwise - he ended his life.

I know that I and many other people have taken comfort from the way he would report from his front line with courage, clarity, dark humour and endless empathy.

The tragedy is, it appears that his words weren't enough to save him as well.

One particular lyric which has been going round my head since Thursday morning is from Pretty Eyes, the last track from Silver Jews' second album, The Natural Bridge:
I believe the stars are the headlights of angels
Driving from heaven to save us
To save us
Look in the sky
They're driving from heaven into our eyes
That's how he sings it, anyway.

On the lyric sheet it reads, "Won't you look at the sky?", not "Look in the sky". I guess it just sounds rhythmically neater.

But in the written lyric, he's pointing to the sky, imploring us to look showing us that it'll be ok. That salvation - of whatever sort you might need - is coming.

I wish he had been looking too.

I hope there are enough links in this post for you to explore David Berman's work.

There is a brilliant article about the recording of "The Natural Bridge" on Stereogum.

Monday, 5 August 2019

no sympathy

I've noticed that when a celebrity comes out as having MS, the response of the online community can be a little... troubling.

Initially there's support for 'one of us', a new member of our own wonky club. Plus they're shining a light on our condition. They're demystifying it for the general population. They're showing that life doesn't need to end after an MS diagnosis.

And then... we can often seem to turn on them.

Selma Blair is the most obvious recent example. She came out in a really public way with some upsetting symptoms for anyone to deal with, let alone a young woman. Poor mobility, speech problems. Hard to deal with when you're an actress, right?

I think the snark started when she was spotted using an Alinker walking bike. These are pretty expensive bits of kit, with crowdfunding being the way most people are able to source one.

Did she even have to pay for her Alinker? Is she being paid to be seen using one?

Just recently she has appeared on US TV and Instagram sharing her experience of Stem Cell Treatment. And there've been some pretty harsh comments.

Things like:
"These people have all the advantages. They can't compare their journey to ours"
"They're playing the victim card. I have friends who are dealing with worse and are more inspiring"
FULL DISCLOSURE: I know where this kind of thinking comes from. I'm not judging, it's only natural.

But the thing that can be missed with reactions like this is the fact that Selma Blair is a young parent who has been blind-sided by a life-changing diagnosis.

I think we can all empathise with what she's dealing with. And I speak from my own experience that I have been willing to try anything if there's the slightest chance it can help (hello, Reiki!).

And the fact is, if money were no object, wouldn't you be willing to try anything for the sake of your health?

At the very least (and I'm hyper-aware that this might not show me in the most charitable of lights so bear with me!), I'm quite happy for Selma Blair and Jack Osbourne to be the guinea pigs for Stem Cell Treatment.

Let's face facts, as amazing as it potentially is, it's not yet a fully proven treatment.

Look at what happened to Caroline Wyatt. The BBC journalist paid to have stem cell treatment in Mexico in 2016. And following six months of feeling good she has eventually arrived pretty much back where she was in the first place. In an interview with the MS Trust earlier this year, she said:

"I do know people for whom it has halted progression, equally I know people who've been worse as a result and I know of one person who died."
So I'm more than happy for research to carry on. And for that research to be robust and trustworthy, we're going to need test subjects.

Any results - positive, negative or indifferent - will feed into future treatments. As if on cue, this (from the MS Society) popped up on Twitter earlier today. More please!

We're all dealing with the same beast, regardless of any financial or social advantages - so let's try not to pick fights with each other.

Or as my pithy yet degenerate friend SwissLet put it in a recent comment on this very blog, "Don't be a dick".

It's a lesson I could do with heeding myself.

Wednesday, 31 July 2019

scenes from the waiting room

Or "What is up with people?"

I wrote this a while ago but I'm publishing it here because I have a couple of hospital appointments coming up over the next week. I hope posting it will mean I can avoid the sort of person I talk about below!

At the hospital for a Tysabri infusion earlier this year there was a guy sitting next to me who was having a loud phone conversation about how shit his life is. About how progressive his MS is and how few options there were for managing his condition.

But he didn't do it in a self-pityingly morose way. It was like he was bragging about how hard he had it. Like the chronic illness version of Monty Python's Four Yorkshiremen sketch.

I get that this might have been some kind of coping mechanism. But surely that kind of chat should be reserved for home. Or the pub. Not in a room full of people, presumably with the same condition, who are battling those same persistent thoughts about progression and increasing disability and decreasing life options.

Maybe it's just me.

But there were a couple of young people on the ward that day. Maybe they were recently diagnosed? And they looked shit scared.

Bet that didn't help.

Shortly afterwards I saw an older guy giving himself an ulcer by stressing about how the busy nurses were ignoring him and seeing other patients before him. Which obviously didn't make them see him any quicker.

I mentioned this kind of thing to a nurse when I was getting a blood test recently. I said that surely this kind of thing never happened to her.

She said you'd be surprised how much mouth she gets from patients - about waiting times or the environment in the clinic - immediately before she sticks a needle into their arm. You would think they would check their attitude before confronting a nurse who has the power to make them very uncomfortable indeed.

I try to be a nice patient - especially when having a blood test - so the worst I get is a nurse who jokes that it's her first day on the job. This happens pretty regularly.

I always think it's pretty obvious that those who are disrespectful towards the people who are there to help them - nurses, hospitality staff, shop workers - have never worked in the service industry.

Talking about this with some box office staff at the Arts Centre where I was based earlier this year, one of them proposed a new type of National Service. One where people have to do 6 months to a year working in the service industry. Or what is sometimes called a McJob.

I think that overall levels of empathy would only be increased if this was brought in.

seems legit

Friday, 19 July 2019

meeting with my neurologist

I had my annual MS MOT earlier this week. If you're anything like me, you'll have waited all year for a precious meeting with your Neurologist so you write a list of topics and questions in advance.

And after going through them - and doing the "follow-the-tip-of-this-pen-with-your-eyes" trick - you get outside and realise that only 10-15 minutes have passed.

The good news is that the last couple of MRIs have been good - no new lesions, no sign of Progressive Multifocal Leukoencephalopathy (PML) - and he's really pleased with how things are going.

Which is great because you've spent the last few weeks in a state of insomnia-induced high-anxiety. Is this a new symptom? Is my mobility worsening? Or does MS simply continue to be a fluctuating and endlessly slippery bugger?

As I've mentioned before, by the time my infusion comes around I can really feel ready for it. And one of the things worrying me was a feeling that this pre-infusion feeling was getting longer.

When I mentioned this, my neurologist said that this was a "placebo" - I think (HOPE) this was a slip of the tongue and he meant psychosomatic. And anyway, how's YOUR Greek?

So that's cool.

Having said that, when I had my infusion a couple of days later, I felt bloody great afterwards.

This was probably helped by the fact that this infusion (my 23rd) was the quickest one yet. I was in and out in less than 90 minutes, including pre-infusion observation, magic bag o' Tysabri and post-influsion flush.

If things continue as they are (no disease activity on a disease modifying therapy I can get on with), I don't see any need for me to change my medication. Especially because the next option for me - Ocrevus - would involve me having a Lumbar Puncture, something which I've managed to avoid so far.

Even though Spinal Tap is one of my favourite films ever, I really don't fancy it.

LOLZ from the clinic
I wore my FES to my last infusion - but obviously I pulled my shorts up hastily after a trip to the bathroom.

Which resulted in me looking as though I was giving my junk an electrical charge.

extreme new treatement for MS

Tuesday, 2 July 2019

wheelchair envy

To sort out my little blueberry toes, I recently had to get a blood test. I always find there's a real sense of camaraderie in waiting rooms. People just chat and pass the time waiting for their number to be called.

Any frequent reader of this blog will know that my attitude to my wheelchair can be described as ambivalent at best (if not downright hostile).

When I was getting it I learnt that if your chair can fold up and/or come apart it tends to add to the weight. So there's a payoff for the convenience.

But in the waiting room on that day I noticed that the woman sitting in front of me had a super snazzy set of wheels.

After passing the time of day, I had to say, "Excuse me for asking, but is your wheelchair as light as it looks?"

She told me it was and was made of titanium. The frame is also totally rigid, although the wheels can come off.

It's a Quickie like this one (stop sniggering at the back).

I said that my own chair was super heavy. And even though I genuinely wasn't angling for it, she asked me if I'd like to have a go.

As a glasses wearer I've always hated when people ask if they can try mine on so I said no thanks. But she insisted.

Please note that I find propelling myself in my chair totally exhausting. It's so heavy!

But this was like going from an old car to one with power steering. I only had to brush my hands past the wheels and I was off.

With her encouragement I went off for a scoot around the hospital. In a couple of minutes I covered a lot of ground, zipping down corridors. The difference between it and my own chair was astonishing.

When I reluctantly returned her chair she said that it had been custom made to her specifications. And it had cost around £4,000 to get one in the UK.


Don't be surprised if I reinvent myself as an Instagram or YouTube influencer in the forthcoming months.
yes my pretty, one day you shall be mine...

Wednesday, 26 June 2019

live music and accessibility

Last weekend I had pretty much the perfect disabled-person's gig experience.

A friend spotted that the buzziest of current UK buzz-bands, Black Midi, were playing at a nearby art venue. Along with another friend, we've been listening to them for the past few months and we were lucky enough to get tickets - they don’t publicise their gigs and have a minimal online presence.

I offered to drive because I wanted to take my wheelchair - pretty handy having somewhere to sit and I wanted to make sure that I wasn't too fatigued for the drive home.

The venue's website states that they "have an accessible building with lift access on all floors". But I've been burned before so on the afternoon of the gig I called them up to make sure that it was going to be ok. (Yes, it was last minute but we only found out about the show a few days beforehand - like I said, minimal online presence).

The person I spoke to could not have been more accommodating, telling me which entrance to use and that there would be somebody waiting in the (closed) shop to take me and my friends down in the lift.

Through past experience I wasn't entirely convinced that it would all pass off so painlessly. But I'm pleased to report that everything worked beautifully. There was even another person waiting for us when we got to the bottom, and once we were down there it was all beautifully flat.

I stood for both sets - using my sticks or leaning on the back of my chair - and both bands were brilliant.

The support act were Nottingham's own Rattle and during their set Black Midi's Tour Manager came up to ask if I wanted to go to the side of the stage for the headline set. I was really pleased to be asked but I'm a bit Old Skool (as well as just generally old) and I like being in the middle a bit further back. It turned out that the position he was offering me was directly behind the drum kit and, as Morgan Simpson beats the crap out of his drums, my ears would still be ringing now, a number of days later.

I caught up with the Tour Manager at the end of the night and thanked him for his consideration and for the fact that they had come to a venue which was so insanely accessible. In recent years, I've had to miss a few of my favourite up-and-coming bands because they've played at a venue which is only accessible by stairs (with toilets only accessible by more stairs). Yes, I can get to Arena venues and bigger spaces but sometimes you want to go somewhere up bit more up-close-and-personal, don't you?

He expressed dismay that this was still going on - "Isn't that sort of thing illegal now?"

Well, yes, technically. It should be the norm that live experiences should be accessible to all shapes, sizes and capabilities. But we all know that this don't necessarily make it so.

I love going to gigs and I don't get to do it as often as I like. It's still mildly frustrating that we have to call up in advance to ask questions and lay out the details of our needs to complete strangers. But this goes to show that it can be totally worth it. And an increasing number of places accept the Access card as proof.

By the way, the gent who let us in at the start of the evening was even there to let us out at the end of the gig. Bravo, Nottingham Contemporary. And many thanks to my lovely mates who pushed my wheelchair for me when I needed it.

If you want, you can even hear a lengthy email I sent into the lovely Marc Riley on BBC 6 Music the following day - it's a long email but he read the whole damn thing (with a few interjections of his own) from 09:20 here.

Friday, 31 May 2019

i am one thousand years old

It's true!

I'm having a lot of trouble sleeping at the moment. My sleep hygiene is good. Ok I probably read a little too much but in my head it helps. Although the evidence doesn't really back it up.

CASE IN POINT: last night after a lovely day out with the family in the fresh air with lots of walking, sleep was still impossible to find. It doesn't make sense.

I've started having a milky drink an hour before I go to sleep (Q.V. one thousand years old) - but sometimes I forget (see earlier point).

I worry that I'm now beyond help!

Another thing that happened yesterday was I went to the doctor to talk to him about the fact that my circulation is terrible (did I mention that I'm at least one thousand years old?).

- this has been a problem since at least my 2017 relapse when the Occupational Therapist came round to talk to us about adaptations in the house. She took one look at my toes and said, "You know they're not meant to be that colour, right?"

Yeah, I know, I know - that was almost exactly two years ago…

They can sometimes look like 10 little blueberries (no pictures because FEET ARE GROSS). And they can get so cold that they keep me awake. So I've been wearing socks in bed - and they're not even Business Socks, FoC fans.

Anyway, the doctor had a good look at my (gross) feet and told me to get some blood tests - after he gets the results he might send me for a consultation with a vascular surgeon.

I tell you, with the lack of sleep, bed socks and bad circulation, I don't mind admitting that I've felt sexier.

Obviously this track by the awesome They Might Be Giants has been in heavy rotation on my internal iPod.

Friday, 17 May 2019

positivity warning

As prompted by Mrs D, who said that, as I'd been spending a lot of time working in health-related circles, I should focus more on some of the good stuff. So for what it's worth, here is a kind-of gratitude diary.


Obviously having a period of down-time coupled with working from home means that I've been listening to a lot of music, both old and new. According to my Last.FM account, these are my most played albums from the last 90 days:
With some friends I've gotten back into making iTunes-compatible mixtapes. And just like I used to do with actual tapes in my wasted youth my mixes are interspersed with bits of random film and TV dialogue.

If you're interested in hearing them, get in touch and I'll explain why the act of sharing music for which I do not own the copyright is all kinds of illegal (hem hem).


Despite my extended belly-aching on here and in real life, I'm doing ok. Working on the podcast, attending infusion clinics, spending time in hospitals, as always will remind you that there's always someone worse off.

Similarly, there are people who are a lot better off, but still. Things could be worse. 


My top recent picks include:
  • It Makes a Sound - this is ancient but my brother recommended it recently. A deeply weird mystery about music and memories. NO SPOILERS as I haven't finished it yet! 
  • The Adam Buxton Podcast - so obvious but he's just too good at what he does 
  • Beyond Today from BBC Radio 4 - their slogan is they ask one big question about one big story every weekday and it's always fascinating. One of my favourite recent episodes focused on the upcoming Eurovision Song Contest finals in Israel which included respected Middle East correspondent Jeremy Bowen explaining the conflict in 90 seconds 
  • Help I Sexted My Boss - not big, not clever, but charming nonetheless
  • The Archers - yeah, yeah, yeah, I know. But I don't pay attention to any other soap operas and this is mine. I even created a tribute to the actor who played Joe Grundy after he died…

Thursday, 9 May 2019

where does YOUR anxiety go?

Mine goes directly to my legs.

I just did a search for "anxiety legs". This is the top search result:
It is common for anxiety to cause feelings of numbness and tingling. This can occur almost anywhere on the body but is most commonly felt on the face, hands, arms, feet and legs. This is caused by the blood rushing to the most important parts of the body that can aide fight or flight.
Sounds a bit like something we all know and love, right?

And that's my anxiety obviously. But where is it coming from?

Well, I've officially finished my job for the photography festival. But the lack of work isn't even the thing that's making me anxious. As I said before, I was hoping to have a bit of a break between jobs anyway, plus I still have my FUMS podcast work.

The Fampyra tablets are having their usual plateau at present. The MS Nurses have said in the past that this is just how it goes - it works great, then it just seems to stop. So I'm currently having a fallow week (all those GCSE History lessons on crop rotation obviously went into my brain somewhere).

Plus I'm taking an extra week between Tysabri infusions this month, in order to avoid paying an extra £300 for a short summer break (school holiday price rises). So medication issues might be a thing.

More than anything else, I'm just not sleeping at the moment. I'm averaging about 4-5 hours a night, and at least once a week I'll have a night when I just don't sleep at all.

Because of all this I had to cancel my appointment at the Gait lab to check in how I'm getting on with my FES (Functional Electrical Stimulation).

Similarly, I've had to roll back a little on my plan to go swimming more regularly once I was "between jobs" again. I describe my swimming technique as being loosely-coordinated drowning-avoidance at the best of times.

Lord knows what it would be like at the moment.

Image lifted from this great old series of UK Public Information Films - stick around for the brutal ending!

Thursday, 18 April 2019

if at first you don’t succeed...

... give up.

Not really, obviously, but it's bloody tempting.

I'm (genuinely) limping towards the end of my contract. But because you can't be too busy, I've recently applied for a couple of other jobs.

One I didn't get further than the application but the other I got to the second interview stage. It was between me and one other applicant. And - ta-daah! - they went with the other guy. To add insult to injury, it's basically the same job that I'm doing currently for a different artform. So that's a thing.

However if I'd been successful it would've meant me doing both jobs at the same time which would be pretty hardcore. Plus Mrs D is very keen that I have a little break when I finish. Especially because I had my most recent relapses within a week of finishing a previous freelance contract.

And truth be told I'm feeling pretty wrung out at present. A combination of long hours and - annoyingly - sleep being hard to come by.

Case in point: I finished writing this post during my most recent Tysabri infusion having had no more than thirty minutes sleep.

So a short break won't do me any harm.

Here's a moment of Emo Zen! 

listening to this song...
... looking out of this window in the hospital


Friday, 5 April 2019

i’m on the FUMS podcast!

In a continuing showcase for my shameless oversharing and self-promotion, I thought I’d let you know that I’m the guest on the newest FUMS podcast episode.

This chat was recorded a couple of weeks ago and, as is obvious if you listen to it, it was a lot of fun.

FULL DISCLOSURE: as editor I took out a few of my more irritating space-holder noises and phrases, plus I removed a whole section of chat where I got something totally round my neck and misremembered a few facts. It seemed easier than stealing Adam Buxton’s Fact-Checking Santa character wholesale.

I’m the first guest in a series where Kathy talks to MSers from around the world to find out about their experiences of diagnosis and treatment. Obviously she’s based in the US so there are some fairly obvious differences between her experience and mine in the UK.

But I’ve heard the next episode which features Robert Joyce from A 30 Minute Life and, even though he's only from Ireland, the variation between the care we receive is pretty staggering.

Tuesday, 26 March 2019

diet and MS (again)

We know you shouldn't be too quick to believe everything you read online. This is why Snopes exists.

But this is particularly true if you use the interwebz to research a chronic health condition.

God knows I've talked about this on here often enough, and not just in relation to the cult-like mania of people who follow certain lifestyle choices.

I've weirdly found myself talking about the OMS diet quite a bit recently, with friends and family. Recently, Mrs D met up with our old friend and colleague I've mentioned before - who has now been diagnosed with MS - and she is doing incredibly well on the OMS diet and staying healthy which is brilliant. She's had a hard enough time dealing with a diagnosis which is the same as that which killed her mother. So more power to her.

Obviously it didn't work for me - whether my relapses were down to increased stress after losing my job and the related anxiety, or Tecfidera not working out for me, I don't think OMS helped. So I've been meat-free ever since.

So imagine my complete lack of surprise when I noticed this link doing the rounds at the weekend:

That's right. Eating all the meat and nothing but all the meat is the only way to go for a healthy life with MS now!

Oh. You didn't know? Where've you been?

Anyway it was good enough for Elvis, right? Didn't do him any harm did it?

Wearyingly predictable though this might be, it was obviously only a matter of time, right? Truth be told, I'm a little ashamed that I didn't see it coming.

I'm sure that the MS Society and MS Trust are looking into this already. But if anyone from either organisation is reading this (and really, why wouldn't they be?), please can you do some robust research into the possible benefits (or otherwise) of diet.

This sort of 'solution' is so attractive. The tools to take control of this aspect of our lives are so readily available that it's no wonder people are willing to try something - anything - like this. There might be something in it (and how great would that be?) but at the moment, no-one really knows.

So currently, vulnerable people with chronic illnesses are effectively experimenting on themselves.  

Happy Birthday, The Internet! The unruly and untrustworthy stepchild of sensible and measured discourse! 
the simplest option

Thursday, 21 March 2019

the blogger’s complaint

The work I've been doing has gotten crazy recently. Hence the extended radio silence. I knew it was coming but still it was surprising nonetheless.

The festival I've been working on opened last week. My contract is for a set amount of days over six months so I don't have a huge number of days left. The festival itself finishes mid-April but they want me to do some work on the evaluation. So the number of days I'll be working each week will necessarily get fewer.

There have been a number of long days and weekends which I guess is par for the course. But it doesn't stop my family worrying that I'm heading for a crash.

On the other hand, my work on the FUMS podcast is like a dream come true. I love it and I feel like I'm pretty good at it - Kathy tells me so, anyway.

Coming up the pod will be featuring interviews with people with MS from around the world, talking about their diagnosis and treatment stories. Obviously Kathy is based in the US so her intention is to show how F'd up their health system is. She started off by interviewing me and this gave me a good opportunity to bang on about the NHS again.

I really enjoyed chatting with Kathy and I'm a shameless self-publicist. So I'll undoubtedly share it here once it's published. Although obviously you should already have subscribed to the podcast,right?

I just hope I don't hate the sound of my voice so much that it's the shortest interview yet. Or at the very least very presenter-heavy.

Friday, 8 February 2019

my head is eating circles

My father in law is Indian and he has quite a way with words. When my wife first used this phrase, and said she'd heard it from him, I just assumed it was her Dad being her Dad.

This being a man who once asked me if I wanted to eat an "apple bastard".

But no. It's 100% legit!

It's a literal translation of the hindi, "sir chakkar kha raha hain". Used to denote giddiness, it can also be used to express puzzlement or annoyance.

And it's the perfect way to describe how my head has been recently.

Ok I'm probably not doing myself any favours taking on two jobs. And while the podcast-stuff doesn't actually feel like work (i.e. it's really enjoyable), the Photography Festival is taking up more and more time.

Obviously it starts in mid-March so the responsibilities are piling on a bit more. But it's not really like any other freelance position I've ever had. In that, they want me to be in the office pretty much all the time.

However, it's great to be getting out of the house 3-4 days of the week and having a bit of face time with actual humans (aside from the fam).

I'm sure my family appreciate me being out of the house, too.

Thursday, 17 January 2019

podcast editor for hire

After having over a year between jobs, I've now got another role to go alongside my photography festival work.

One of the people I met in Philadelphia last year was Kathy. Truth be told, she really took me under her wing during the conference and was just super friendly and helpful. She's also quite the potty mouth so we got along fine.

I asked her why she only had nail varnish on her middle finger. In answer she flipped me the bird and said, "F you MS".

It turned out that Kathy is also responsible for a podcast called FUMSnow and at the end of last year she said that she might be looking for a new editor. After asking what it would involve I said, "well, I could do that".

She gave me a few files to have a go at, plus the show-notes and related blog post to write. I really enjoyed doing it, taking the raw files, scrubbing them up, giving them a light audio polish and sticking them together. And she must have been impressed because she offered me the role right away.

The first episode I had a hand in was published last week.

Stevedomino. The gig-economy writ large. Will work for food.

If I can be of any assistance for anything like this, you knows where I ams!