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

 

#sadface

#buttface

#growup 

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.

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:

http://meatheals.com/category/nervous-system/multiple-sclerosis/

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

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.

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.