my head is eating circles

from samosapedia.com

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.

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!
 

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!

 

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

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.

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.

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?

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.