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


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.

Friday, 23 September 2016

wrapped in plastic

Right at the start of my MS 'journey' (ugh) the only person we knew that had any connection with the condition was a girl Me and Mrs D both knew at the theatre where we worked. Her mum had Primary Progressive, was severely disabled and sadly eventually died. So that was our introduction to MS and our overriding image when I was diagnosed. 

As I've mentioned before, the theatre is the only past job where we still have any links with our ex-colleagues (and obviously I also met Mrs D there). So we've stayed in touch with our friend over the years. 

In February, she was diagnosed with Clinically Isolated Syndrome and an MRI showed lesions on her spine. Now CIS isn't necessarily a first sign of MS but given her family history she wasn't taking any chances. 

Which is probably why she has wholeheartedly gone for the OMS Programme. Our friend is feeling good and has been sharing photos of her food on social media for a while. Earlier this week she shared a link to the OMS website on Facebook and, coupled with the fact that I've been feeling mightily worn out recently, our interest has been piqued. 

From the website:
"Overcoming Multiple Sclerosis promotes a program of diet and lifestyle management that has been shown to improve the health and lives of people with Multiple Sclerosis. Professor George Jelinek, who was diagnosed with MS in 1999, developed the rigorously researched OMS Recovery Program more than 15 years ago."
Now I've always been very cynical about this sort of thing. It's probably been a kind of denial to say, "well, I've been dealt this shitty hand so I'm going to eat whatever I damn well please". And, y'know, we all need a bit of scientific proof and validity.

But it has always been the case that we live in a house which is predominately Vegetarian - and while I don't eat as much meat as I might do (or as much as my mum might like) neither am I as careful with my diet as I could be. 

So I'm dipping my toes into a Pesca-Vegan diet. Of all things.

The whole thing is based around diet, exercise, stress management / meditation, vitamin D and omega-3 supplementation, and medication when required - nothing too way out there, right?

I'm not going 100% straight off the bat - the oils and fats which are meant to be avoided will take a lot of research. But even cutting out meat, dairy, crisps and biscuits feels pretty hardcore at this point.

Earlier this week I had probably my last ever cheese and pickle sandwich (pictured).
Luckily it was as bland and anaemic as this picture implies. And the plastic wrapper makes it look like something out of Twin Peaks.

I feel that I've been shamed into getting a bit real-er than I have done before. But I'm looking forward to the day when I stop going "awwwww..." in a mardy voice whenever I realise that I can't eat something any more. 

The thing which has really helped is the fact that the aforementioned Mrs D is being super-supportive. She could have easily said I was on my own (she LOVES cheese and crisps more than she loves me) but she has bought me all kinds of groovy (and weird) stuff to try to help me along my way. 

So I need to break it to my brother and my friend Mike that the days of beer and burgers are at an end.  God alone knows how my mum's going to take it...

Although it is weird that a few months back when I started Tecfidera I was being told to eat as much fatty stuff as I could.

Make yr minds up, people!

Monday, 12 September 2016

inspiring and offending in equal measure

Let's not do the whole "not blogged in ages, too much life getting in the way, blah blah". Let's just say that we're both at fault and move on, OK?

Last month was our 10th wedding anniversary so we packed off The Child and went down to That London for the night and took in a musical. Now, I loves me a musical but even I have to admit the highlight was John "Bergerac / DCI Barnaby" Nettles, who was sitting behind us, helping my wife look for her glasses.

(Ironically he was no bloody use. But then her glasses were back in the hotel...)

The next day involved the National Gallery and the British Library, where there was a little punk rock exhibition, the most punk rock part of which was this fantastic bit of righteous graffiti by Viv Albertine, ex of The Slits. 

Never mind that, there were loads of signs up saying that phones and  photos weren't allowed. But did that stop me? TAKE THAT, THE MAN!

We decided not to do the Underground this time. More than anything I get a bit anxious down there, it's not the most accessible thing in the world plus it was the height of summer. So we got taxis - both yr classic hackney and a couple of Ubers. I know they can be a bit controversial but being able to see when your (prepaid) taxi is going to arrive at the exact spot where you are standing is undeniably pretty bloody cool.

The other fantastic bit of travelling was going First Class on the train. Maybe you do this sort of thing regularly but I've always been strictly Prole. The only reason we did it was because a friend of ours works for a train company and got us a couple of free passes. Nice work if you can get it but we probably wouldn't have been so free and easy with the taxis otherwise. 

Last week we had a week away which involved driving all the way down to the South coast - 244 miles each way, the furthest distance I've ever driven. 

Both of these incidents are a reminder of my New Year's not-resolution, to try to give up less and try to go out of my comfort zone. I've forgotten about that quite a bit but I do need to try to maintain that frame of mind. You're a long time dead.