Hello, it's me

Haven't seen you in a while!

Actually, I genuinely have no idea if anyone is reading this. Do people read blogs anymore, other than people old enough to remember the internet boom times? Having said that, it seems that this post - an accessibility review of Center Parcs - still seems to be the most popular, having racked up 64,000 views. Weird. 

Anyway, just in case, here's an overdue update. I know how worried I can get if health content providers suddenly go quiet (I refuse to call them influencers). 

I became a little conflicted about the idea of being an MS blogger. To be honest, I was always conflicted.

In order to show up consistently you need content. And with MS, that's naturally going to be health-related. Not that I ever found myself wishing for an incident. But there’s only so many ways to say, "I'm still bimbling along, my legs are increasingly weak, and my underlying symptoms are incrementally worse than they were in the past."

So what’s been going on?

I'm still working as a podcast editor. I still love it. 

Going out anywhere depends on a lot of admin and negotiations. But we persevere when the event warrants the effort. 

We bought a house, and we're very happy there. 

The Child is now a teenager. She is obsessed with music and has adopted my two most expensive habits - buying records and guitars. 

Otherwise, I'm still bimbling along, my legs are increasingly weak, and my underlying symptoms are incrementally worse than they were in the past. Obviously.

Whaddya gonna do?

As I write this, I'm having an Ocrevus infusion - my first in eleven months. No drama, this is just how long it has taken for my bloods to normalise enough so that I will get the benefit of the medication. I’m very pleased that my neurologist is risk-averse. 

It has been three years since my last health incident. I know that another one is waiting in the wings. Let’s hope all my talk of "health content" doesn’t bring it out. 

My brother and I are doing a podcast. It's ostensibly about the music that we wrote and recorded in our dweebily misspent youth, but we also talk about our health issues, as well as other people's music. 

We also encourage listeners to get involved and share their own creativity. Give it a listen if you get the chance. There's a blog where we post related video content, and you can find it pretty much everywhere. It's inescapable.

I started doing a Substack to talk about my podcast-related thoughts but it's hard to find the time to write that, so I doubt I'll write in here again. 

But never say never, obviously. 

Go well, unknown and unknowable people of the internet.

i feel (too?) good

Later today I go for a short appointment with the MS Nurses. Not a full MOT as far as I know, just a catch-up. 

Obviously this is the first face-to-face meeting with them since I was ill earlier this year. So it'll be interesting at least.

Weirdly, last night I finished the book I started reading towards the end of my stay at my parents house. It's a book about Kraftwerk that Mrs D got me for Christmas. It isn't particularly long - I just couldn't focus on reading for the first month, and there are always newspapers and magazines vying for my limited attention.

Kraftwerk by Uwe Schütte

Since I last wrote anything here I've been getting on okay. But I have been guilty of maybe feeling too good. For example, I'll often walk the length of our house without thinking. And then I'll realise that I don't have my walker or my sticks, and I'm now stranded at the wrong end of the house and I have no idea how I'm going to get back.

I've been out with friends and family a few times, and I've been playing guitar and working. On that, the fact that all of my podcasting clients were totally understanding is undoubtedly one of the best things from this whole situation. I'm so glad I've found a new and better way for me to work. 

I'm increasingly aware of how much my illness affected everyone around me. I can understand that they tried to keep their own struggles from me while I was recovering. But just in conversations with Mrs D, our friends, my parents, they'll say something that makes me stop. 

For example, Mrs and Little Ms D frequently shared a bed because neither could sleep. The way our friends rallied around them both and made sure they weren't alone. It's important to remember that I'm not going through this by myself. And I know that. 

But perhaps more importantly, I'm not the only one who was diagnosed with MS all those years ago. My friends and family were too, because it affects them everyday. Not to make me feel any more guilt than I feel already! Believe me there's enough of that. 

But I'm maybe more aware than ever before about the love that surrounds me, sometimes from unexpected places. I'm very grateful and blessed. 

--

The emotional nature of this post might have something to do with the music I'm currently listening to. While I was recovering, the only music I had with me was what was on my phone. Which consisted of our Christmas playlist and the one belonging to my daughter (which has a lot of very cool music on it, I have to say.) 

At one point I downloaded the Bandcamp app so I was able to listen to the albums I'd bought through the site. And I bought a new album. 

"Carvings" by Juni Habel is a collection of spectral folk (new genre alert!) from a Norwegian songwriter (two ticks for Steve's tick list) that was recorded in various rooms in her grandmother's house (recording backstory - BIG tick!)

It's utterly lovely - listen to it below.

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

Whereas...

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!

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!

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?)

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!

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 

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!
 

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.

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.

when is independence not independence?

When it's independence in Multiple Sclerosis!

Last week I was invited to attend a workshop in London on this very topic, the first time I've done anything like this.

The objective of the workshop was to:

• Look at what the concept of independence means to people with MS and their carers 
• Explore how MS health and care services can make achieving independence a core objective, to inform the development of policy and practice recommendations

whiteboard? post-it notes? it's a WORKSHOP!!

All in it was a pretty interesting day and I do enjoy chatting to other people who get what it's all about. Also in attendance was a MS Nurse from the Queen's Medical Centre (she taught me how to inject Rebif back in the day!) and someone from the MS Society.

However, it's grimly ironic to note that of the people with MS at a conference on independence, every one of them came with a carer or companion.

For my part, Mrs D was busy so my Dad came with me. Aside from his help with the cognitive and anxiety-raising issues associated with travelling to London, we took my wheelchair. This was mostly for use in getting around train stations - aside from this we were either getting taxis, and obviously I was rocking my sexy double sticks.

In order for me to be independent enough to attend this event, it took:

• A lift from my father-in-law to and from our local station
• My father attending the event with me and transporting me by wheelchair when necessary 
• First-class train travel both ways - for extra room, and less chance of hassles with dodgy loos or gits in your seat
• Pre-booked assistance with getting the wheelchair on the train - I walked to my seat both journeys but it was meant to help my Dad get the chair on board. AN ASIDE: the assistance was provided in each instance (we've all heard horror stories about assistance simply not turning up) but my Dad is quite impatient so we only used it on our outward journey. Every other time he just made it work.
• Taxis - I don't need the hassle of dealing with the Underground

And that's not counting the rest of my family and all the medical professionals who get me to where I can even consider travelling to the extent which I have this year.

Aside from remaining in employment, concerns about financial security and the wobbly nature of the welfare state, this was one of the main things we talked about at the event - the fact that each of us has a silent majority working behind the scenes to keep us going.

So much for independence! It's like the African proverb, "It takes a village to raise a child".

But in my case, it takes a small army to give me any kind of independence.

i was looking for a job...

WARNING: contains motivational claptrap

the CULTURAL ELITE in a salon yesterday

Recently there has been a weirdly high number of suitable jobs for which I could apply.

It's strange. It has been a struggle and most of them have been of the "work up application, submit, get no response at all" variety.

But recently a position came up at a city-wide photography festival, a role that was my first ever freelance position (about 12 years ago now!)

So I thought I'd give it a go.

The job description was interesting, in that the vast majority of tasks were desk-based. But there were a couple of curve-balls involving taking journalists on walking tours round the festival.

With the best will in the world, this wasn't going to be something I could do.

I talked it over with the divine Mrs D and she persuaded me to go for it. Show them what I can do and negotiate the rest if and when the time comes.

I had an interview earlier this week and it was fine. Part way through, they asked if there was anything about the job description that I was concerned about. So I told them (even though, as I'd walked in with both sticks blazing, they would have guessed).

After a written task it was over. I felt it had gone ok but didn't hear anything that night.

As the following day progressed with no word at all, I started beating myself up. That job should've been a no brainer. What had I done wrong? Mrs D was more of the opinion that, if I didn't get the job, she'd want to know why. We know people shouldn't discriminate on the grounds of disability but, y'know, they do.

Long story short, they called at around 4.30pm to offer me the job.

It's part time for seven months and I can do a lot of the work (which is totally within my skillset) from home. Perfect.

So for the next seven months, I'll be a fully paid up member of the CULTURAL ELITE again. Did I ever really leave?

(As an aside, I looked for an image of the CULTURAL ELITE to illustrate this post. But on looking at the second image which came up on Google, I realised that I have worked with three of the people in the picture. And I know the photographer. I do not know ANYONE in the image above!)

If anyone reading this is always seeing jobs which they can 85-90% do, don't let the other 10-15% - which might be beyond your physical capabilities - put you off. Have faith, know your worth, and go for it.

(Told you!)

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.

which way now

With wearying predictability I didn't get that job.

I'm disappointed but in a way not that surprised. The jobs I've gone for recently have all been Arts Marketing jobs and my entire work experience has been in this area.

Truth be told I kind of fell into this sort of work when I left university - after applying for a handful of jobs, a local theatre was the only place to get in touch, offering me a work experience placement. Since then I've worked my way through the ranks to end up... in the job which I was forced out of this time last year.

I'm ok but wondering what's going to happen next. I'm not fishing but I genuinely think there's a strong possibility I've been bluffing all these years!

I think I need to take stock and maybe look at working in a different area. Little Ms D has offered me a job telling stories but we haven't discussed terms yet.

Offer the last year a handful of people have told me I should write something. I know the cliche is that everyone has a book inside them. But I struggle having something to tweet about most days - and that's even at the old 140-character rate, let alone the enhanced War-and-Peace 280-character behemoth.

Ah well. Pick yrself up again, Steve.

maybe I should've studied this book a bit closer?

music of my mind

This is a post which I've been planning for ages. So long, in fact, that I've already (sort of) shared it IRL with one of the few commenters on the site (hi there, Swisslet).

Anyway, the main reasons that I use my phone are to take photos and listen to music. At one point during the work shit last year I made a note of some of the albums on my phone that happened to fit my situation. Some were my own, others were copied from friends - notably the blues titles that fitted a little too well.

These were all genuinely on my phone at the same point (mid September) and soundtracked many long days and nights when I was trying to salvage my career. 

Admittedly I've monkeyed around with the order a little to make it read in a more pleasing way and this is not a complete list of my phone's contents. But even so it's hard to escape the feeling that the universe was trying to tell me something at the time. And as an old friend used to tell me in a similarly momentous crunch point in my life, there are no coincidences:

• This is Happening - LCD Soundsystem (Spotify link)
• Pushin' My Luck - Robert Belfour (Spotify link)
• Most Things Haven't Worked Out - Junior Kimborough (not on Spotify)
• Too Bad Jim - RL Burnside (not on Spotify)
• Depression Cherry - Beach House (Spotify link)
• Pee Wee Get my Gun - T Model Ford (not on Spotify)

In another spooky-ish coincidence, I came upon this article on The Guardian website. A lot of this chimes very much with my experience at work - especially the comments from people who said that they felt they had to work harder and longer than others to prove themselves.

The article contains a link to a Government consultation on work, health and disability but it closed last week - I hadn’t heard anything about this consultation, had anyone else?

Back in the (even more real) real world, as hinted previously I’ve stopped my claim for Job Seekers Allowance and started a claim for Employment Support Allowance. I’ve also got a short contract for some freelance consultation work, which is good.

Less good? Another dispiriting job interview experience (where I knew half the panel) which led to another rejection and - as yet, over a week later - no feedback. Guh.

anger is an energy

Since I lost my job... actually, that's not quite right. Since I mislaid my job... no, still not correct.

Ok.

Since I was encouraged to put down my job (simultaneously being urged to forget where I'd put it), I've been able to coast quite nicely. Christmas / New Year broke things up but the other week I realised that I'm fast approaching my second month between jobs.

As there's very little to apply for out there - and also because I've been paying into the system for the last 20-odd years - I thought I'd see if the job centre might be able to help me out.

After starting a claim for Job Seekers Allowance, I'm currently attending a programme about looking for work at the Job Centre every day for 4 weeks.

Let's talk about accessibility!

This particular job centre is on the other side of the city. It has no parking, let alone any disabled parking spaces. It's also located on the inner ring road. And the closest parking is across the ring road - which is naturally busy and fast-flowing (with no convenient crossing nearby). This is all without mentioning the fact that the building doesn't have a public toilet.

Tuesday was wet and miserable, pathetic fallacy writ large. Our little group of jobseekers had a session about conditionality - basically all the things we have to do in order to get our money.

I get it. People can take the piss. But when the best they can offer - with a straight face! - is the sweetener that, if you work part time (up to 16 hours a week), you're allowed to keep the first £5 of your JSA if you keep claiming. So you're only £5 better off.

I understand that there're other benefits that come with working - social, intellectual, all of that. But looking round that room I could actually see the thought bubble appearing over everyone's head - "Fuck. Dat. Shit."

Call me cynical. But the reality seems to be that the system is rigged so that people get so demoralised that they give up, at which point they drop out of a system that doesn't have to pretend to care anymore. Add that to the (in)accessibility and it's hard not to feel that disabled people aren't expected to want to better themselves and contribute to society, and anyway they should stop clogging up the system to let the normals though.

(If I can draw your attention at this juncture to a semi-related story about a bus driver effectively turning his passengers against a wheelchair user for wanting to board his bus, if you think I'm being paranoid)

This opinion was also voiced by a member of our group who is a former Job Centre case worker. She even told me that I'd probably be better off having something called a Work Capability Assessment, instead of going down the JSA route. Otherwise I might be in danger of having my benefits stopped if I refused to go for jobs which I'm physically unable to do.

Yikes. I knew here was a reason I hadn't been to see I, Daniel Blake - coming hard on the heels of my application for PIP, these current adventures in benefits might have finished me off completely.

And I'm one of the lucky ones - I have a supportive network of family and friends, plus I'm relatively well educated so I can (if I squint) navigate through forms and the more labyrinthine aspects of the benefit system.

But there were some people in our group who through no fault of their own didn't have an idea about how to create a CV. How does a society or an education system fail people so completely that they can't create something like that for themselves?

The people working at the job centre have an immensely tough job, and they are doing what they can.

But as I said to one of them afterwards, "Five quid is a tough sell".

a picture from life's other side

The last day at work was every bit as weird as I'd expected it to be. And that's considering that I almost came to blows with a colleague the day before whilst clearing my desk

This actually involved throwing away a lot of documents that I haven't looked at in all the years I've been there. There was a lot of crap there, but some great finds including:

• A sheet with instructions about Proper Apostrophe Usage (liberated from my first real post-uni job when I left there over ten years ago)
• Inexplicable examples of work from random print agencies.

I was determined to keep it low-key - the whole situation isn't really something I want to be celebrating. I did get some nice stuff though, not least a bit of Bowie vinyl from my boss. He's a complete Bowie-nut, so we've had many conversations about Zavid's life and work over the years and particularly over the last 12 months, obviously.

So I'm sitting here on my fourth day post-work. The first day doesn't really count as it happened to be the day for my annual MS MOT. Key take-home from this was that when I mentioned I was trying out the OMS lifestyle, the nurse didn't run screaming from the room. In fact, she said that she'd read the book too, and that it contained a lot of good convincing science. Which was good to hear.

Also good was the fact that my white blood cell count had started crawling back up - I've been having monthly blood tests as this is a standard side effect of Tecfidera.

We had a chat about my perennial bladder issues which have been rearing their head recently. There wasn't much else we could do about it though, as the bladder scanner was being fixed (the physio was off too, and the nurse we were talking to was the only MS Specialist nurse in that day).

After a bit of monkeying-about with my walking sticks (they've been giving me a bad back. SPOILER ALERT - they might've been set too low) and (fingers crossed) a final monthly blood test, that was it.

Yesterday and today I've had a crash test in how bloody exhausting it can be trying to stay on top of maintaining a house.

When I picked Ms. D up from school yesterday, a friend asked me how I was getting on (she and her partner know all the details of my recent situation). I said that prior to this, the idea of being a house husband was really attractive. But right now, I'm exhausted and scouring the job pages for anything to fill my days!

the blue bus is calling us

* post title from "The End", obvsly.

Just waking up on this, my last day at work. Mixed emotions, really.

The last year has been dreadful and I'm looking firward to just stopping for a bit - no regrets there.

But it's undeniably a scary biz.

I'm hoping for a low-key exit - but I've been picking up that my "a few drinks in the pub next door" edict has been.... not quite overruled, more expanded like a deluxe-edition CD reissue of an album that you haven't listened to in a while.

I hope there won't be any speeches. I certainly won't be making one, lest it becomes reminiscent of Father Ted's acceptance sppech for the Golden Cleric award.

Let's be honest, this is the leaving speech that everybody wants to make, right? Mixed in with Scarface. Just me?