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!

Monday, 31 December 2018

shame of our nation

Speaking to an MS Nurse at my Tysabri infusion she surprised me when she said she'd had some good news that day. Because she had just found out that her application had been successful and she would be allowed to stay in the UK.

Call me naive but this totally blew my mind. That there was even a possibility that this qualified and endlessly experienced and empathetic nursing professional might be forced to leave the country she and her family call home.

Who's next? The MS Specialist Neurologists, who are all EU citizens? Who exactly is lining up to replace them? 

At the same time, a friend shared a video from the Home Office Facebook page publicising the EU Settlement Scheme. Over some jolly muzak, a series of diverse and smiling family and social groups, presumably talking about how much they're relishing the opportunity of applying to live in the communities they have enriched.

See how happy they are!

caption: If you are an EU citizen living in the UK, and want to stay in the UK after the 31 December 2020...

To say we should be ashamed of what our nation has become is something of an understatement.

Sunday, 30 December 2018

meat is… murder?

Even before my dalliance with the OMS lifestyle I've been a circumstantial pescatarian for a while.

[Circumstantial Pescetarian - great early EPs but that first John Peel session was an absolute cracker #oldManJokes]

Back in the day of my initial diagnosis the watchword was varied diet with as much fish as you could stomach.

Mrs D has been vegetarian for more than half of her life so our diet is naturally veg-heavy - although Little Ms D loves chowing down on all of her farmyard friends.

After falling out of love with the OMS Pesco Vegan diet last year I decided not to start eating meat again - not from any great moral standpoint, just for convenience sake. Even for someone obsessed with (that band AGAIN!) The Smiths at a formative age, I've never really thought about the food I eat at a particularly deep level. As long as it tastes good I'm in.

alright, alright, we get it - you really REALLY used to love The Smiths

Having said all that, the food section is one of my favourite parts to read in our paper. Recently there was an article about preparing the perfect Christmas ham. My mum prepares one every year and I looked at the picture in the article for so long I could practically taste it.

I posited the idea of eating some this year and was all set. But when the time came - much like the Philly Cheesesteak I didn't have in Philadelphia - I just couldn't face it.

I think my meat-free diet has been going on so long that the idea just seemed bizarre.

I know how hypocritical that is when you consider the horror-show practices of the dairy industry. And that's even aside from the fact that I'm perfectly comfortable with eating living things as long as they do their living underwater.

But I don't think I can do any kind of vegan diet again. It was hard on everyone around me and super-expensive. Which is pretty depressing - it's cheaper to eat the flesh of an animal bred and kept for the purpose of being eaten than something which grows out off the ground.

Plus when I talked to Mrs D about this blog she said - in no uncertain terms - that there was no way I could even consider trying to be vegan ever again.

Thursday, 6 December 2018

the power of The Smiths

I went for a UC (Universal Credit) "commitment" appointment the other day, due to starting my job.

This is because, even though this job is still classed as Freelance / Self Employed, it affects some of our other benefits. And because Derby is now a Universal Credit area it’s all change for us.

We’ve all read about the shitshow that is UC. But last year, when I was repeatedly answering the same questions when applying for JSA, ESA and Housing Benefit (all while battling the evil PIP beast), we talked about how much simpler it would be to input our info once and it be automatically farmed out to the relevant agencies.

So in theory we’re all for it.

The meeting was fine and we were well prepared. Although it was another case of a meeting where the person we were talking to said, "I don’t actually think you need to be here..."

Part way through, the chap asked if he could answer his phone as his car was at the garage. We said fine but as he walked off we were puzzled by his familiar sounding ringtone.

So when he came back I asked him what it was. It turns out it was Spent The Day In Bed by Morrissey, which we'd heard on 6 Music.

He asked if I was a fan - I said no, but The Smiths were a different story. I repeated my party line that, although I don't listen to them very often, there will never be another band who means as much to me as The Smiths did when I was a callow 13-14 year old.

(and yes, I do repeat this line a lot)

The chap we were talking to said he got goosebumps when I said that - thankfully Mrs D didn't burst out laughing at that or suggest we get a room.

We had a brief chat about the music, Morrissey's recent wrong-headed pronouncements and got back to the job at hand.

At the end of the meeting he said, "I just have one final, very important question to ask you - what's your favourite Smiths song?"

That's quite an ask! (no pun intended) Mrs D helpfully reminded me that my favourite lyric is the opening line of This Charming Man (for the economy - SIX WORDS! - which sets up the world of the rest of the song).

But the song which immediately sprang to mind - and which I still stand by - was The Queen Is Dead.

He said that he was more melancholic so his favourite is Well I Wonder, possibly one of the most hilariously downbeat and self-pitying songs in their whole catalogue.
Gasping, dying, but somehow still alive
This is the final stand of all I am
Maybe this bloke's in the wrong job?

Over the last couple of years, I've had to deal with local government benefits agencies alongside the Department of Work & Pensions on numerous occasions. And the bureaucracy is staggering at time.

But whenever I finally get through to talk to a real person, they are almost without fail incredibly helpful and understanding. And they're the people at the sharp end of carrying out the sticky manoeuvres of some fairly unpopular policy.

Maybe I've been lucky. But the next time you get through 55minutes of call waiting messages soundtracked by Vivaldi's bloody Four Seasons, spare a thought for the person who eventually answers your call.

Friday, 30 November 2018

moodswing indigo

I started writing this while having Tysabri infusion number 16.

As part of each treatment the MS Nurses have to ask a series of standard questions. Are you allergic to anything. Have you had any infections, cold/flu symptoms, that kind of thing.

One question always provides an opportunity for hilarity: how has your mood been?  

Oh I'm as up and down / miserable as ever. Chortle.

This is because the delightful PML brain infection (Progressive multifocal leukoencephalopathy, sprung from the JC virus) can cause personality change as one of it's first symptoms.

And due to Tysabri's efficiency in stamping on any foreign agents in the Central Nervous System (including the body's own immune system), once it takes hold PML can lead to severe neurological disabilities and - TA-DAAAH! - death. Marvellous.

The Nurse recently told me a story about another MS patient. He was known to be miserable, antagonistic and aggressive to his family and his care team. A proper arsehole.

After a few months on Tysabri he became noticeably more cheerful. He started being more pleasant to live with, stopped picking fights, laughed easily.

The nurses noticed this, became concerned and sent him for an MRI scan which showed the early stages of PML.

Luckily they caught it in time. I wonder how he is now?

Thursday, 29 November 2018

the (work) conversation

When I was first diagnosed with MS I was working in a theatre. I tried to keep it on the DL but made sure that the colleagues I worked with every day knew what was going on.

The following year I had a couple of freelance roles. And in each organisation I made sure that I had The Conversation and at least one person knew about my condition.

After that I got my job at my most recent employer. I had The Conversation and told my boss (on the first day!) that I had MS. I was able to keep this fairly hush-hush until I had two relapses in the course of a couple of months. The large amount of time off meant that I couldn't really hide it any more.

So my employment history pretty much consists of a series of 'comings out'. And for the last few years - as my invisible disability has got more visible - I've been pretty much out.

As a member of the CULTURAL ELITE, the people I've worked with have stayed fairly constant - we all might've moved from organisation to organisation but the faces tend to stay the same.

So when I had the interview for my current short term contract, I was able to discuss my health openly, as I knew two of the people in the panel fairly well. Not to say what I couldn't do, but focusing instead on what I can do and do well.

My role offers a level of home working and on the whole it has been good so far. Even so, when I've gone into work, I've found waking up, washing, breakfasting, dressing and travelling to an office for the first time in two years utterly banjaxing.

I recently needed to have a variation of The Conversation with my line manager - the "I know this is part of the advertised role, and we skirted around it in the interview, but the thought of doing it is making me ill and I can't do it and I don't want to".

Y'know, the one where you feel like a complete liability and a dead weight.

I've said it before - and admittedly I've been burned by it before - but people working in arts and culture can be bloody lovely. When I told my line manager that I hated feeling like I was letting her down she said that she hated the fact I had to deal with these issues. Her understanding, and her comment that everybody really appreciated everything I was bringing to the project, was like a load off my mind.

Further proof that I was settling in came later that day. I'd left the office and said goodbye to two other freelancers working alongside me. I nipped to the loo and when I came out, one of them said "are you still here?!"

Then she darted off, saying "I'll race you to the lift!"

Cheeky sod.

Truly I have found my people. Again.

Wednesday, 31 October 2018

driving, mobility and the 20m rule

I've always loved driving, ever since I passed my test *gasps* over a quarter of a century ago.

When I passed (second attempt, like all the best drivers) I'd always look for a slightly longer route and go for meandering pointless drives for no real reason. Years ago, an ex-girlfriend completed some postgraduate study in York and pretty much every weekend I'd do the 180 mile round trip, returning back home in the Monday morning rush hour. And I liked it.

I've always been a safe driver and my MS hasn't affected my abilities. In actuality, the fact I was able to drive was used as a reason my Personal Independence Payment (PIP) application was turned down last year.

See? We're not joking when we say that this system actively penalises people for their independence.

Anyway. Full disclosure: over the last few years there HAVE been a handful of incidents when I've been driving long distances and my left leg has gotten tired. Which could mean that gear changes required careful planning.

Which is all well and good during normal driving. But recently I decided it was time to stop riding my luck.
I've always driven with manual gearboxes but a couple of months ago we got our hands on an automatic car. And it's brilliant.

It's taken so little time getting used to driving without changing gears that I can't imagine going back to a manual car. Aside from anything else I'm not tired when I get to where I'm going. Plus not having to think about gears allows me to concentrate on everything else which is going on.

I personally decided not to explore other adaptations but what is available is staggering.

Help for driving can include hand controls, steering aids, pedal modifications. Transfer plates and swivel seats which help people get into their car.

There are even roof boxes that can pick up and store a wheelchair, like some kind of benign Transformer.

Obviously these things come at a price. If I hadn't got the enhanced mobility part of my PIP award I would probably have had to give up driving - maybe not today but soon.

There are a lot of people with MS who aren't getting the PIP settlement they should be entitled to and the 20 metre rule is the main reason. It's such a cruelly inflexible rule - especially when MS is a condition which fluctuates on a day-by-day (if not hour-by-hour) basis. It demonstrates a complete inability (or unwillingness) to engage with the reality of the condition.

I've grumbled about the MS Society over the years but their ongoing campaign against the 20m rule is one of their best.