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!

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?

i can hear music

At my last session my therapist gave me one task which I've been throwing myself into with some gusto.

She told me that I needed to listen to more music. I know, what a slavedriver. But I am nothing if not a good student.

One of my favourite bands has always been They Might Be Giants, who often get tarred with the wacky brush. However, they suffer from the opposite problem to The Smiths, who are mostly hilarious but who people assume are miserable. Conversely, TMBG write quirky, funny songs that have a sheen of cleverness and fun but frequently touch on dark issues such as death, depression and social anxiety.

One of my favourite songs of theirs is called - bluntly - Dead. Call me a simpleton, but I’ve always just read the lyrics as being an original look at the concept of death and reincarnation

I came back as a bag of groceries

as well as fears about the legacy we leave behind

Did a large procession wave their torches as my head fell in the basket?
And was everybody dancing on the casket?

as well as daft regrets and the wrongs we never corrected

I will never say the word "procrastinate" again
I'll nevers see myself in the mirror with my eyes closed
I didn't apologise
For when I was eight and I made my younger
Brother have to be my personal slave

So far so clever (but since when did we see cleverness and expertise as a bad thing?).

But the day after I got my second PIP refusal letter I spent a lot of time playing TMBG songs. I was in a bad way and quite frankly just about ready to give up. And in my heightened state I realised that this song is actually about depression:

Now it's over, I'm dead, and I haven't done anything that I want
Or, I'm still alive and there's nothing I want to do

It seems so bleeding obvious now but a quick look at the TMBG wiki shows that not one person has tagged it with depression or pulled out that theme.

But that line ("I'm still alive and there's nothing I want to do") summed up how hopeless and pointless it felt that day. And weirdly made me feel better.

But it’s not all highfalutin concepts and heavyweight lyrical concerns. Sometimes pop smarts just come at you out of left field and you find yourself playing the same song over and over again.

A quick reccy of YouTube plays and recent Last.FM stats shows that I’ve played this song by Alvvays around 12 times within the last couple of days.

I know nothing about them, they're not doing anything remotely original. It's a song about love gone bad through thoughtlessness or laziness, and musically it’s treading some well worn paths.

All I know is, the way she slurs downwards on the word "psychology" at 1.28 (on the video above) makes my heart go all squiffy.

That one moment makes my day every time I play it, in a way that hasn't happened since the off-beat ride cymbal which kicks in at the end of Uptown Funk (from 3.54). Yes the song is the very definition of ubiquitous but by god that's a Grade A piece of pop arrangement.

So what has all of this navel-gazing got to do with anything?

Yesterday I went for another bloody job interview. I’m waiting for feedback and clinging to the fact that one of the people who interviewed me isn't at work today. But being realistic it's not looking good is it?

However, at the very least this will be (surely?) the last job interview I have this year. So that's something, right?

Play it again, Stevey.

the devil will find work for idle hands to do

Final day of steroids today - taking them has got a little easier, especially since I stopped trying to take more than one at once. No real side-effects - aside from mega dry-mouth, an inability to drink a cup of tea or coffee while they're still warm (because gross), and the inevitable difficulty falling asleep.

On the first day, I managed the grand total of one hour. Last night I set myself up for the long haul with a couple of podcasts, got all comfy - and promptly fell asleep (don't worry, I eventually woke up stupid early so no harm done).

This particular relapse has really affected our whole family - in a way I've been the lucky one, only having to concern myself with getting some rest. It turns out that Mrs. D is - unbeknownst to me - unable to to sleep before I come to bed. We're sleeping in separate beds while I'm getting the 'roids out of my system, but she can't relax until I'm set up in bed. It's understandable, considering the nocturnal nonsense that we were dealing with at the weekend.

My parents and in-laws are just short of holding an intervention with regards to my pesco-vegan OMS diet. Their concerns are two-fold:

• I'm apparently losing a lot of weight (I've not noticed it myself and my weight has always fluctuated - I personally think I could stand to lose a bit)
• It's too much strain on Mrs. D - especially when I'm having a relapse. I'm not much of a chef so all I'm doing is giving her something else to stress about.

I'm going to give it some thought - it is a pain in the arse and I'm not even doing it completely strictly. There are all kinds of wacky rulings about the kinds of oils you're meant to use, permitted fat content and types, plus there are potentially three different meals which need to be made each day - carnivore for The Child, vegetarian for Mrs D, and annoying fuss-pot for me. Plus pre-prepared vegan food is stupidly expensive and the labelling for "Free From" items is so totally non-standardised as to make you scream.

But I am conflicted - I feel mentally clearer since I went down this path (no matter how half-arsedly I've been doing it) and this particular relapse has felt different to my previous attacks. I know the Neurologist kind-of fudged the question of whether he wanted to call this a relapse or not, but if it IS a relapse, it is progressing at a more leisurely pace than those in the past.

Now there are a number of factors which have changed since 2012 -

1. I've changed medication to Tecfidera 
2. I no longer have the stress of being at work (and the relapse-related guilt that I should be trying to work from home and/or getting back to work as quickly as possible), although I do have the stress of looking for work, applying for benefits, etc. etc.
3. On top of all that I've been trying to adopt the OMS lifestyle - not just the diet, but more regular exercise, daily meditation, and Omega 3 and Vitamin D3 supplements.

Who's to say what has made the difference? It could be any, all, or none of the above. Yet again, life with MS is nothing if not a crap shoot. You pays your money, you crosses your fingers, you takes your chances.

and then three come along all at once

In a manner similar to the proverbial bus, I've been waiting for ages for a number of specialist appointments and have now had three in the last couple of weeks.

1.  Wheelchair clinic
Because my old NHS wheelchair was a behemoth (code name Dreadnought or The Destroyer), I've been wanting to see if there was a different option that (a) would fit in our car more easily, (b) was a bit lighter, and (c) I could propel myself - because, y'know, INDEPENDENCE.

So I recently went for a wheelchair assessment. It turns out that, when you're 6'3", wheelchairs don't get all that light.

But my new one (which arrived earlier this week - God bless the NHS) does come apart easily so it should help. Plus the wheels seem to have some kind of coating on them which means it's easier for me to grip them and, hopefully, propel myself. RESULT.

Although (FULL DISCLOSURE) it is currently taking up the position vacated by my old wheelchair, in a cupboard under the stairs. Baby steps, yeah?

2. Physiotherapy
Yep, I'm going round again - I think this is my fourth time, still working on strengthening my core and sorting my wonky legs. I've only had a couple of sessions so far (and one of those definitely had the emphasis on "Therapy" - God bless the NHS) but plenty of stuff to work on.

And if I can't find the time to do my exercises when I remain resolutely BETWEEN JOBS then there's no excuse.

3. Orthotics
I saw them a while ago (turns out it was seven years ago) when I was fitted with a delightful support stocking for my truculent westward pin. This appointment was a bit more challenging, as the person I saw said that my right leg is now as bad as lefty was previously (hence a new delightful stocking).

Westy has gone even further downhill so I've been given this monstrosity, called an Ankle Foot Othosis:

It's basically a really intense splint which fits inside my shoe and helps to give that much-needed kick. I have to wear it for an hour a day at first in order to get used to it - it's really exhausting and I'll need to inform the DVLA before I try to drive with it on but it DOES help. Bastard.

I'll be taking it to my next physio session as a challenge - "what can you do to keep me from wearing THIS?"

PS - this was given to me on the spot at no cost - God save the NHS.

will (home) work for food. and money

So it's been 5 months since I left my job. I've been doing more of that freelance work I mentioned before - certainly more than I was expecting, which has prevented me from doing much of anything else.

Aside from that, one of my other top time sponges is the filling-in of endless benefit forms - Housing benefit, two separate forms for PIP,  two for ESA so far with the promise of one more to come. Joy unconfined.

Which doesn't leave a whole lot of time (or energy) for looking for work, which has been on my mind a lot recently. This is because, leaving aside the aforementioned 5-monthiversary, I've realised that I can't really envisage a time when I'll feel able to work full time again.

When I look back to last year, I wonder how I managed to drag myself to work every day (without fail), even without considering the extra hours, weekend and holiday work, or how so very dispiriting that whole process was.

I feel better in myself but I think I'm spending a little too much time in my own head at the moment. Having said that I can't see me wanting to do any work which isn't home-based. The jobs are out there, I just need my applications to hit the right spot.

I had a fairly depressing realisation recently. A friend asked if I was enjoying my current short contract role - helping to coordinate marketing activity for this, which allows me to say I'm still part of the CULTURAL ELITE.

I said that I was loving it - the work is all about proofreading, copywriting/editing, brand management and partner coordination, which are all my favourite things to do (with a side order of BEING AN ARSE ABOUT GRAMMAR). But, I said, the main thing I like about it is that the people I'm working with are genuinely appreciative of and grateful for everything I do.

As soon as I said it, I thought: when you think I was in my last job for nine years, don't you think that's just a little bit sad?

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.

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!