2019 gratitude list

A recent Calm meditation session I did talked about practicing gratitude as an aid to better mental and physical health. In for a penny and all that.

These are the things I'm grateful for - NB I started writing this before the end of last year but REAL LIFE.

1. The two women I live with

Mrs D and Little Ms D. The very best people.

Not only is everything I do impossible without them, but there would really be no point.

2. Family

We have the most amazing family around us. They support and care and do a lot of the heavy lifting.

I like to think they get something out of it too, something back from us. But we know how lucky we are.

3. Friends

I'm also grateful for the amazing friends we have, not just for me but Mrs and Little Ms D too. In a way which I never saw coming we seem to have got a three for the price of one deal, in that the core group is shared on each level between us.

I've been particularly lucky that my friends have been in my circle since my good old days playing music.

We get together regularly, talk shit about music, drink. It sounds wonderfully ordinary but again I know how lucky I am.

In 2019 they pushed me around to gigs, got angry on my behalf when venues were inaccessible (Bodega Nottingham, I'm looking at you), and have even picked me up to drive me to the pub when the weather was particularly crappy (then taking the car back home before walking back to the pub).

Legends.

4. Interventionists

I'm not going to bang on about my Podcast Editing business *ahem*. But in June of last year I had a Zoom conference with Kathy from FUMS and Jackie Z (Queen of GSD).

Kathy I met at HUConnexion in Philadelphia in 2018. I just happened to arrive late enough that the only space left was next to her! Isn't it crazy how things work out?

Jackie has been a virtual presence in my life since... well, I genuinely don't know. I do know that her old MS blog (sadly defunct) changed the way I felt about my diagnosis. To say it saved my life seems a bit too dramatic. But it's somewhere along that line. We've been chatting online ever since, through good and bad times. And the Zoom call was the first time we'd ever spoken.

I've been describing that call as a "career intervention" ever since. Two forceful Yanks telling me that podcast editing might be the career direction I didn't know I was looking for.

By the end of our chat I had a web address and a set of tasks to carry out. Within a few days I had a logo and a website, designed, built and hosted by Jackie.

Ever since then they've been promoting me and sending clients my way. To say that I'm grateful for these two amazing women is one of the understatements of the millennium.

5. Readers

No one comments on blogs anymore. But I know that there are some people out there reading this stuff. And not just this post I wrote about the accessibility of Center Parcs way back when (still the most visited page on here).

Towards the end of last year IASB was even picked as one of The Top 10 MS Blogs to Follow in 2020 by Everyday Health website.

I know it's stuff really doesn't matter but it was really nice to receive this. Especially because they'd obviously gone fairly deep with their chosen episodes. Thanks.

--

So these are the things which I still feel grateful for. And I do feel better when I acknowledge them.

[SPOILER ALERT]

I have a horrible feeling that I'm going to need them this year!

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 FUMSnow.com 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 https://podcastingeditor.com).

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!

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.

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!
 

the blogger’s conundrum

What to write when there isn't much going on?

This time last July I had only just returned home from my parents' house, after a second relapse and second dose of steroids. I was just about to begin Cognitive Behavioural Therapy sessions as well as recommencing physiotherapy. Plus I'd just had my first PIP assessment.

Quite a lot has happened since then!

• CBT was fantastic. I never did put myself in for another round but I don't think there’ll come a time when I won't need to keep working on my mental game. Still many improvements to be made! Mostly to do with the way I handle (or don't) stressful situations. 
• I started on Tysabri, one of the more intensive MS treatment options. I started writing this during my 11th infusion. I've also had bloods taken for a further JC Virus test. As I mentioned previously, because I recently tested slightly positive I'll always be considered positive now, even though the score can go up and down. 
• And because of this I've got another MRI coming up soon. My last one showed no physical signs of Progressive multifocal leukoencephalopathy (PML). Which is something. I'd hate to die because of something which I can't even say...
• I'm still keeping on with my physio - the improvements are incremental but enough to keep me going. 
• We've been to Philadelphia! Still seems utterly surreal. 
• We defeated the evil PIP monster. Not to sound overly triumphalist but I am proud - of my family and, yes, me too. That we didn't give up. 

I'm still trying to find work that I can do - or want to do. That's the big challenge now!

This isn't work but it's nice to have been nominated, regardless - if you should feel so inclined, please click on the image below to endorse this little blog.

a philadelphia story

"who let the miserable limeys in?"

Next month I'll be attending HU Connexion 2018, a health advocate conference in Philadelphia. This has been organised by Health Union, the people who run the Multiple Sclerosis website I write for occasionally.

To be honest I haven't written for the site for a while so I ignored their first few emails about the conference. Plus it's in America. Which is, like, a long way over there.

But the site administrators got in touch a couple of weeks ago and asked if I could write something about being a father with MS. After writing the article (first objective: make Mrs D cry; result: success) I mentioned the conference in an off-hand, "wouldn't it be nice" kind-of way. And everyone I told about it said I had to go for it.

By this point we'd missed the RSVP date but thought it was worth a punt.

And we found that not only had they extended the date but they would be delighted to have us there. So they're paying a good chunk of our travel costs, feeding us and putting us up for two nights at a pretty nice looking hotel in Philadelphia.

It's not somewhere we've ever thought of going but it looks a really cool city with a lot of history. And it's not every day someone offers to pay a good whack of your travel to attend a really interesting looking conference.

I just hope that the positivity of these advocates won't put people in the UK (myself VERY MUCH included) to shame with our constant griping and competitive disability point-scoring.

HUGE thanks to the team at Health Union who responded (really quickly) to all of our requests. You really helped us out and we can't wait to meet you!

And massive thanks to our American correspondent Ms. CrankyPants for giving me a bit of local knowledge and letting me know that (apparently) the Philadelphia 49ers have recently won the Super Ball FA Cup final.

Good to know, I certainly don't want to look stupid, do I?

this kind of music

This blog is just to say that the issue of Open Door (from the MS Trust) featuring me and SwissLet wittering on about going to gigs (along with other articles) is out now.

I must say, however, that the opening line of my bit is shocking - when I saw the proof I was horrified with what I assumed the editor had done.

Until I checked the original document I'd sent over and realised that I really had started it that way. And me an English graduate!

If you want to read it (and really, why wouldn't you?) it's below - I tried to embed this with it open at the page which features my big stupid face, just as it would be if you were to come to my house... but the options don't seem to work.

(the article starts on page 12)