Friday, 9 December 2016

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?


Tuesday, 6 December 2016

the poor historian

I had a brief conversation with someone on Twitter the night before my interview last week. She'd shared something really interesting which I retweeted. We had a brief conversation the following day and I said that I'd recently read something online which was about the different personality types of people with MS. I planned to dig it out and share it with her as it kind of backed up her point.

It took a couple of days and several hours rooting around in my browser history to discover that the article I wanted to share was the one she'd shared in the first place.

Like I say, the first time I read the article was the night before my interview so my being distracted might be excusable.

But seriously. What a div.

Anyway, the article, "Who Is The Poor Historian?", appeared in the Journal of the American Medical Association in 1984. I reproduce it in full below because I think it mirrors a lot of things I've noticed since I was diagnosed, both in myself and others.

Personally I can be all too ready to kick off if a medical professional doesn't appear to be listening. At the same time I've always recognised that I can be like the third patient in the penultimate paragraph who is too eager to minimise or deny symptoms.

Similarly, I've met many people who can go the full on drama route (as an aside, I wince when I think back to the early days of my diagnosis when I went to the Neuro team in Nottingham practically begging them to give me steroids because I had pins and needles in my hands. True story).

Yep it's another example of somebody pointing out a personality trait which I've long recognised in myself. And making it feel like a huge, eye-opening epiphany. Go figure.

Anyway, this also serves as a bit of a kick-up-the-arse as I have my MS MOT next week. Let's get real.

---

In other news, I didn't get the job. I'm waiting for some feedback as I felt like I did a really good interview. I certainly didn't embarrass myself, and I'm still proud to have got an interview with a national, big-deal organisation. Plus I drove 109 miles there and back to attend the interview.

Anyway - heartfelt thanks for all the good vibes and well-wishes that I received here and elsewhere. It - genuinely - meant a lot.

Sunday, 27 November 2016

worlds collide

The other night I was standing outside of work waiting for a lift home when an old work colleague passed by, so we had a brief chat.

Now this job was a crappy part-time retail thing which I fell into after university. But - as is the way - the further I get from it, the more attractive it seems.

For a start, this job happened to be in a record shop (for younger readers, imagine a download store as an actual physical space where you hand over your money for actual physical media, both musical and visual).

In reality the people there were (on the whole) lovely and the discount was more than welcome (25%! It's amazing I came out with any money at all!). Plus I was also given part responsibility for the running of the Jazz department.

This was air-conditioned and separate from the rest of the shop, so it had a distinct and entirely bespoke playlist. The only bummer was that if I ever put on anything really good, some bugger would come in and buy what would invariably be the last copy - in all the time I worked there I don't think I ever got through Giant Steps.

Anyway, Steve (who I saw last week) went from being a shop floor jockey during my first seasonal role to vying for management when I got more regular hours. Despite that (Cuh! What a loser! Trying to have a CAREER!), he was still one of the good guys.

When I saw him last week we had one of those general catch-up conversations and then he said, "oh yeah, I've been reading on your blog about your work situation". Turns out his wife is having non-MS neurological health-issues herself and I guess that's how he found my blog.

It was a reminder that everyone is going through their own stuff. And that if you WILL put your life online, you should be prepared for it being picked up by anybody.

In other news, yesterday was the first time that I met someone IN REAL LIFE who I'd up until that point only 'known' online - one Mr. Swisslet of this (and other) parish(es). It's frankly shocking that it took us so long, especially because we actually live around 13 miles away from each other. And although I had been looking forward to having a good bout of competitive moaning about our health, we managed to natter on for a good amount of time before the subject of MS came up. It was great and I hope we'll do it again soon - although my wife did wonder why on earth we didn't document this historical meeting of minds with a selfie.

Honestly it never occurred but the meeting did happen. And anyway, he's way taller in real life than he is on the internet. Turns out he's the guy who ends up standing in front of me at gigs (and I'm 6' 3").

Anyway, there's a lot of waffling in this post and it's not the middle of the night. So I'm clearly not at home.

That's right, oh most-perceptive-of-all readers. I'm spending the night in a hotel because I've got a JOB INTERVIEW tomorrow morning. Do send all good wishes if you can spare any!

Friday, 18 November 2016

will work for (pesco-vegan) food

So without going into too much detail, in three weeks I will be - how can I say it? - between jobs.

I've not been fired and I haven't resigned. It's not even due to that old chestnut, artistic differences.

Maybe Gwyneth had it right all along - we're consciously uncoupling. It's mutually beneficial.

I can't go into too much detail - confidentiality - but as my issues with work have been such a preoccupation on the blog this year, it seemed daft not to mark it on here in some way.

Earlier this week I was in a position to start telling friends and colleagues at work. I've been getting some lovely messages (and many, many hugs) but the question I keep getting is one I don't have an answer for:
"So where are you going?"
It's only natural when this has - to people outside the process - come out of nowhere.

I suppose on the whole I'm feeling pretty good about it all - mentally lighter certainly. And it's great to know that I'm going out on my own terms. Plus I get a bit of breathing space before Christmas.

But every time someone asks that question I get the fear.

It's all going to be fine, yeah?

Sunday, 30 October 2016

addendum

Shared by my brother on Facebook earlier today. Seemed relevant to yesterday's post.

Saturday, 29 October 2016

warning: this message may self-destruct

[NOTE: this post was edited on Sunday 30 October. While it may have been cathartic to write, it wasn't particularly helpful]

I've been writing and re-writing this post for the last two or three weeks.

But even so, this post may disappear fairly soon anyway, because the thoughts that are going through my head are your basic adolescent cry-baby dear-diary bollocks.

I'm in a position where I'm trying to apply for jobs at a point when my confidence and self-belief is on the floor - I am a 43-year-old disabled man of no-fixed career-path.

The thought of having an interview is panic-attack scary but not getting one is devastating. And that's without taking into account the fact that there ain't that much out there.

When I look back on the past nine months, I've really been taken to the edge, mentally and physically. I've felt myself withdraw from friends and family, turning into that classic stereotype of an MS "sufferer", saying "No" to friends or not giving an answer either way until the moment and the offer have passed - so much so that I can't blame them for giving up on inviting me.

Now don't misunderstand me, I have an amazing family support network - my family, my in-laws. The most resilient and endlessly supportive wife I could hope for. The most wonderful, inspiring, brilliant little girl.

For the last 20 years I've been employed, made redundant, self-employed, and then employed again. And now...?

I genuinely have no idea what is going to happen next. And when I'm feeling positive, the fact that SOMETHING is going to happen next is genuinely exciting.

I've been trying to meditate every day (my best run so far is 41 consecutive days and I'm currently on 28). I use the Calm app on my phone, and one meditation involves extending "Loving Kindness" to yourself and others.   

Be still, my inner snark.

The first part of this meditation is the following mantra:

"May I be happy, may I be safe, may I be healthy, may I be at peace"

Now I am a cynical miserable sod, but I keep returning to this idea. And it helps, so I'm trying to keep it in my head. I'm trying. But the struggle is real. 

And I guess I'm posting all this for purely selfish reasons - to get the thoughts out of my head.

May you be happy, may you be safe, may you be healthy, may you be at peace.

Tuesday, 4 October 2016

where'd the cheese go?

So I'm continuing to dip my foot (more than a toe, anyway) into the OMS programme.

Most of the things OMS talks about are common sense - cut out meat and dairy, eat more fruit and vegetables, exercise, reduce stress. So I've been swimming more regularly, trying not to sweat the small stuff (easier said than done) and thinking (and talking) a lot about the food I eat.

Like I said before, Mrs D has been really supportive. But not only has Little Ms D been revelling in her position as the lone carnivore in the house, but my whole family has been remarkably cool. After an initial "well, what CAN you eat?" they just want to help us out. Especially if it could (maybe?) have a positive affect.

Predictably, eating out can be somewhat trickier. My first weekend on the OMS programme we went out for Sunday lunch. The aforementioned Head Carnivore had a trio of meats (child's portion, obvs) while we both had the (cheese-based) veggie option.

As I’m not doing this diet for any kind of moral reason, this kind of slippage shouldn’t bother me as much as it does (but, y'know, obviously the dairy industry is all kinds of horrific if you actually stop and think about it. I mean, what is the genetic purpose of cows milk??).

But if I’m going to do this I want to do it in a way that lets me judge any benefits clearly.

Then last weekend we went to our local art-house cinema (NOTE: we went to see the decidedly non-arty “Bad Moms” - which was great) and decided to go for food afterwards.

Looking at the menus of places nearby, it looked like it was going to be another struggle for me to get anything which fitted in with OMS. It would be unrealistic to expect restaurants to offer a Pesca-Vegan menu, so I resigned myself to eating something that was just Veggie and probably cheese-based. As the weather was wet and shitty we decided to get some food at the cinema.

So I was delighted when we spotted that they actually offered a Vegan menu - and the marvellous Vegan Burger I had really hit the spot.

Recent “awwww…” moments have been prompted by thoughts of Macaroni Cheese and Cheese Scones, rather than slabs of meat.

A brief musical interlude by Ween



The OMS friend I mentioned previously has recommended that I concentrate on what I can eat, rather than what I can't.

A common sense rule which can profitably applied to an MS diagnosis in general - think about what you can do, as opposed to what you can't.

But y'know what else helps? Finding genuinely brilliant dairy free "ice cream".


At least until Sainsbury's brings out their already legendary range of Gary.