Saturday 24 December 2016

dignity... always dignity

As I mentioned previously, one of the things we really wanted to talk about at my MS MOT was my ongoing issue with my bladder. Longtime visitors here may remember that I've been taking Solifenacin for a couple of years now (Oxybutynin before that) and have been through a bit of light Bladder retraining - who could forget my self piteous bellyaching about completing a Void chart?

Anyway, I've been feeling even more put upon recently with endlessly numerous trips to the toilet, before taking even the shortest journey. It's been getting harder and harder to leave the house, especially if I (or we) need to be anywhere at a particular time. And I can't remember the last time I was able to sit through an entire film at the cinema without having to nip out. Frustratingly, when I do go, although I do GO, it never feels like I've GONE enough.

As I've had the same issues and have been "dealing with them" for at least three years (if you can call planning all travel by toilets along the route "dealing with things"), the fact that I haven't had a UTI by this point is frankly miraculous.

I've recently been through a period where I've had to get up to use the loo in the night. But I've always been able to put this down to a variety of other things - too much booze, drinking anything too late, work-related stress. Even taking into account the fact that I haven't had any "accidents", it needs sorting out.

So earlier this week I found myself back at the QMC in Nottingham. The MS nurse I saw last week had suggested that I might be able to increase the dosage of Solifenacin which she thought might go some way to solving the issue.

Now bear in mind that before my appointment I had been to the toilet:
  • Twice at home
  • Once at my parents' house on the way
  • Once at the hospital
All things considered, I was fairly confident that my tank was as close to empty as possible.

So I'm sure you'll appreciate how surprising it was to hear the urologist say that my bladder was close to full - holding around 380ml.

The long and the short of it is that there's no benefit from upping the dosage of Solifenacin and no other drug options.

So in January I'll be visited at my home by a nurse who will talk me through intermittent self-catheterisation. Not really what anybody wants to hear.

But the urologist said that these issues won't go away, not the way I've been managing them anyway. And using a catheter once a day should give me a bit more control and maybe get my life back.

(I know that sounds dramatic but even at this stage it really has had a massively limiting effect on my life and the life of my family)

Even so in the walk from the clinic to the front of the hospital I went from frighteningly stoical about it all, to depressed, to full-on enraged, all in the space of 2-3 minutes.

I'm writing this with a couple of days distance. Now? I'm still pissed off about it.

I can talk a good game about certain things being necessary tools to get my life back.
  • Walking sticks? I have used at least one every day for the past 5-10 years. But I still really hate them.
  • Wheelchair? Sometimes necessary and often totally life-enhancing. But I hate it and will do anything I can to avoid using it.
  • Self-catheterisation? I can see that this could really be beneficial - plus I know all too well the affect these issues are having on my day-to-day life. But I can't imagine anyone has ever been overjoyed at the thought of doing it.
Yes, I know there are worse things in the world that people deal with on a daily basis. And whining about this makes me sound like the sort of "poor me", cry-baby Bad News Blogger that I despise

More than anything I feel bad for Little Steve. We've had good times over the years!

I feel like a guy who's looking fondly at the family dog, knowing full well that in a couple of weeks I'll be taking him to the Vets to get his nuts snipped off. Does he even know what's going to happen to him??!

Whatever. Like always I shall prevail!

Thursday 15 December 2016

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!

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


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.

Friday 5 August 2016

have guitar, will travel

or "rocking (gently) in the free world"

the author, looking well moody
So a little over a week ago we (Frankie Machine) played at IndieTracks. And it was great despite me getting ridiculously nervous (as I always have done) beforehand.

I tried to calm my nerves with a visit to the ridiculously well-stocked Real Ale bar. My first choice was for a B-52s-inspired ale, but it was pointed out to me that at 5.2% (in the middle of the day) it probably wasn't the best choice. So like my band-mates I plumped  for a half of Roadrunner. It was a good choice but it didn't help all that much.

I saw a few people who I've not seen for a LONG time, then our travelling army of supporters (wives, partners, kids) turned up.

Everyone at the festival was super-cool, helping me to get over the train tracks and bridges and sorting me out with a chair for our set. Really lovely.

My Mother-in-Law has asked me beforehand how long we would be playing - I told her "there and back", because we got on a train, went to a different part of Midland Railway, and came back again. All told, it took seven songs, including between-song banter and a final song when the train had pulled in.

(because of the position Mrs. and Ms. D took up, I don't appear in any of our videos and photos, so I'm forever indebted to my old friend Brian for taking the picture at the top of this post which proves that I WAS THERE - I'm not glum, that's my concentration face!)

In many ways it was the perfect gig - once the train started moving, the audience (which was surprisingly large and not just our family members) couldn't leave. A dream gig!

IndieTracks is a lovely festival - just a nice vibe. Truth be told, the music is not all to to my taste but everyone seems to be lovely. Rob (the titular Frankie) has been to the DownLoad metal festival and he says that there are many similarities between the two - the audiences are made up of the interesting, quirky and intelligent people who were ridiculed at school for being different and for the duration of the festival they're surrounded by people who understand them and share the same bond - THEIR PEOPLE.

Apparently IndieTracks rules state that acts who play one of the programmed stages (Indoor, Outdoor, Church [where we played last time] and Train) cannot play the festival again for three years.

So thanks once more to IndieTracks, for making us all feel like stars - and not only because of our snazzy performers' wristbands!

Thursday 28 July 2016

just make it (the moaning) stop

Work nonsense is ongoing. 

Anyway, it's too depressing (and frankly embarrassing) to go into, so let's get POSITIVE
  • One positive outcome of the Occupational Health visit was the assessor's recommendation that I look into doing regular Meditation. As is the modern way, I downloaded an app for my phone, and I'm not going to pretend that I use it every single day but I know that when I do I find it incredibly helpful - just to stop, switch my brain off and do nothing for a few minutes.
  • Little Ms. Domino has finished her first year at school and had an end-of-year report which to be frank made me sob. She's such a smart cookie and we're so proud. No doubt she can be a massive pain in the arse but we're so lucky in so many ways (for instance, she can also be super-considerate about Daddy's walking). Love her. 
  • Five years after we last played there, Frankie Machine has been asked back to play at the Indietracks Festival this coming weekend. As before we've been rehearsing, and being a bit of a lapsed musician has been challenging (am I a Relapsing and Remitting musician?) but I'm having a blast. My callouses are coming back nicely too (see photo below for evidence). I'm pushing for us to have more regular rehearsals in the future so it will give me some impetus to 'keep my hand in'. But I really am loving it. Although this year we are playing on a (moving) train - you'll be pleased to know that I have requested a chair.
they might look GROSS but those manky bits on my fingertips are a GOOD THING
  • Next month is mine and Mrs D's TENTH Wedding Anniversary. What a long strange trip it has been. As I've mentioned before, we got married in Venice at the height of Summer. We have always intended to go back for our 10th anniversary but we've decided to look at going when the temperature is less oppressive - it's frustrating (to admit defeat to MS) but we'd rather play safe than spend a load of money on a potentially depressing couple of days with me sweating and limping (best case scenario!!) through the crowds. The plan now is to go back at some time next Spring.
  • We went to see The BFG movie at the weekend. It was a good film, a bit sickly-sweet in places (Spielberg) but some good funny bits too. My favourite bit of the film, however, was before the main feature. Our local cinema has a very funky ad ident which is obviously a 21st century version of the classic Pearl & Dean ad - loads of Latin percussion and Jazz Flute, it's fabulous. Anyway this started and Mrs D began to intensively mime playing the flute - apparently this is something she does whenever she goes to this cinema with Little Ms D, who normally takes on the role of percussion. For some reason she wouldn't do it on this occasion so we just clicked our fingers (strictly on 2 and 4) and laughed our asses off at Mum, who was going TO TOWN. This was absolutely my favourite part of the whole weekend - I really love my family.

Sunday 3 July 2016

by way of an explanation

AKA my glittering career

In the past, when the gaps between posts have dragged on, it has been because nothing has happened. 
This has not been the case this time. 

The appraisal process which I mentioned before has been going on since February. There have been many regular (interminable) meetings, which have felt quite personal and pointed (call me paranoid but that don't mean it ain't so). 

Somewhat annoyingly, way back at the start of this appraisal process I was asked if I wanted to reduce my hours or take a position with less responsibility. My pride got in the way and said that I wanted to step up and deal.

If I could go back in time, I would bite my boss' hand off.

At one point in the process (probably before another meeting) I told my boss that I was hating it and wanted it to be over. It was making me miserable and ratty, at work and at home. 

He said "I know what you mean. I'm going through it the same as you". 

To which I responded, "With the greatest of respect, I really don't think that you are". 

(If memory serves, that was the day my daughter put this plastic medal in my shirt pocket, where it remained for the whole day. She's a heartbreaker.)

FULL DISCLOSURE: in the middle of all of this, there have a couple of things which I have let slide at work. I'm not proud of this.

We recently had a board meeting and I was left feeling incredibly exposed and attacked. And I did not respond well (I should say that I put my head down, rather than standing on the table, giving everyone the finger and loudly suggesting they had known carnal relations with their maternal parent). 

Questions have been asked about my ability to do my job (I've been asking them of myself too). I was given a series of key tasks to achieve and I have met them - even going so far as taking documents away when we went on a much-needed holiday recently. 

On top of all this, the Board requested that I have a workplace assessment. Now I've had these in the past but they've always been from the view of supporting me. The employment law specialist on our board recommended this company:

Now in my pre-assessment research, my feeling was that this website didn't look like it belonged to a company that was overly concerned about protecting the rights of disabled employees. To put it mildly - no matter how conveniently (or even cynically?) multicultural the images on their website. This was the view shared by the Equalities Officer at my local council.

My boss said there was nothing to worry about, that the trustees needed to show the organisation had thought about all the potential outcomes, which would mean a nice healthy 'tick' in this section of our Risk Register.

But my last relapse was four years ago, and my attendance record is little short or exemplary. If all this is prompted by my recent performance, surely this should be a disciplinary matter; rather than being about my wonky genes and uncertain prognosis.

I was righteously nervous, so much so that I asked my dad to come along to support me - as suggested by my MS Nurse and the aforementioned equalities officer.

Despite a couple of hairy moments, this actually went ok. The assessor seemed to have some knowledge of MS and made some pretty good recommendations - timetabled work from home, regular breaks throughout the day, and MEDITATION. The first two of these will come under the heading of 'reasonable adjustments' that my employee will have to consider. The third one is for me alone.

Right. That's everything up to date. It ain't over, not by a long a stretch - but AVANTI!

PS - I am aware that there have been seismic changes in UK politics in recent weeks, but I feel that they are currently beyond the scope of this little blog. Plus things seem to be changing on a daily basis. I am scared about the future of this increasingly inward-looking little country.

Tuesday 31 May 2016

show and tell

One of the most “challenging” things about getting Little Miss Domino out of the door of a morning is the fact that, just as she gets ready, she invariably says that she needs to find something for “show and tell”.

(me neither)

I don’t know if this is specifically an American thing but I’ve become aware that I’ve been doing this a bit at work - I seem to be going through a period when, even though I consider myself pretty-much out of that particular closet, more and more people have been coming up to me, doing the classic head-cock-thing and asking, “are you ok?”

I know, the bastards.

This isn't just people at work however. People who I see socially - parents of other kids in particular - have been asking the same question. Rightly or wrongly, I’ve been tending to jump straight in with:

“[gesturing to my sticks] Oh these? I just need to use them to get about. I’ve got Multiple Sclerosis so I’m disabled… No I’m OK… It is what it is….”

I don’t know if this is a good way to go about my business, but I’m not trying to get up in anyone’s grill (or anything). 

However it has to be said there is something kind-of militant about rocking the TWO STICK look. But after taking this stance for a while, it just gets a bit tiring.

One day arriving at work recently I was feeling pretty weary when I happened to walk into two circus / acrobatics performers (as you do - seriously, the things these people can do are frankly astonishing. And not a little unnatural).

Anyway, despite the fact one or both sticks are in use every day, they had obviously never clocked them in use, so they asked me “what’s happened?”

It was early in the day, they are lovely (FREAKS but lovely) and I couldn’t bear to get into it, so I ended up mumbling something so inconsequential that I have no memory of it.

So I’m now being hyper-aware of when I choose to “double-stick” - obviously I won’t let myself come a cropper physically for the sake of making anyone feel uncomfortable.

As the more obvious affects of my MS seem to be getting more and more noticeable, I might need to come up with a new answering technique which:
(a) Is honest about the situation
(b) Doesn't make the asker feel like a schmoe

Friday 29 April 2016

what was that? aftershock

So the basic rule for survival in 2016 seems to be to have never done ANYTHING awesome EVER.

Last Thursday evening I was driving to a work thing after nipping home briefly. I turned on Front Row and realised with horror that people were talking about Prince in the past tense.

When I got to work, I was touched that everyone I spoke to expressed concern for how I was and surprise that I'd made it in!

As a 13yr old growing up in an ex-mining town in the Midlands, flamboyance was something to be avoided. The other boys in my year were all about drinking, smoking, sport, copping off with girls (or at the very least talking about it). Music didn't play a huge part in their lives but it already did for me, which even gave me an 'in' to talking to the quieter more studious girls (nothing ever happened, but still).

There was always something otherworldly about him, aside from his in-your-face “sexualness”. So when I first listened to him it was always in secret. The first album I got was Parade and I was mortified to see that he was showing a fair amount of flesh on the cover. He was incredibly private, obviously shy, androgynous, yet seemingly sexually voracious. It was a weird mix.

I've realised over the past week that, between them, Prince and Morrissey were, for me, kind of the twin guiding lights, showing me that there was a different way to act as a man - similar to the way that Bowie was for people in the 70s. It was ok to be different - intelligent, softly spoken, well-read, funny.

I'm not going to pretend that I bought everything he did. My window for album purchases is Around the World In A Day to The Black Album, but God knows whatever he did and the way he did it was always interesting.

The only time I saw him live was when he did around thirty nights at the O2 in 2007. When he popped up out of the middle of the stage and said, "Dearly beloved..." I'm not ashamed to say that I squealed.

It was pretty much a perfect Prince gig - a fair smattering of the hits and a substantial bit of aimless funk jamming. It's like if you went to see Bob Dylan and he didn't mangle his classics beyond recognition you'd feel shortchanged! But the epic version of Purple Rain (what else?) will live long in my memory.

In the week since his death, there have been a lot of heartfelt remembrances. But I was also incensed by this story on the BBC News site - Five strange stories about mysterious US musician. This was the DAY AFTER his death.

Like Bowie before him, Prince was an artist who liked to keep some things private but who knew how to add to his mystique by sharing tantalising titbits with the press. Were any of them true? I could genuinely give a shit. I like my celebrities to be mysterious, untouchable and little bit eccentric and OTHER.

[POP QUIZ: as an aside, can anyone think of a difference between Prince and Bowie which might mean that the way they're talked about in memoriam is in itself somewhat different? anyone? hmmm...]

The worlds of celebrity and music are getting duller by the second!


Thursday 21 April 2016

one step forward, two steps back

So the Swimming Pool that I've been going to has closed down!

We'd got a plan in place and everything - I was going to drop the two female Dominoes off at Kiddy Ballet [CULTURAL ELITE], head round the block to the pool, do a few lengths, and get back to ballet in time to pick them up. But no.

This means that there is now no Swimming Pool open in Derby City Centre.

Working in the Arts [see CE], I know all too well that there's NO MONEY IN THE POT. I get that.

But be honest, is this really anyone's idea of a city?

Having said that, I do appreciate the irony of  closing down the Queen's Leisure Centre on Liz's 90th birthday.

The nearest good quality pool (the Queens was, to be honest, a sh*t hole but it was convenient) is in the town where I was born. Not a million miles away but not exactly handy.


EDIT: oft of this parish and someone who I frequently add to a list of 'Friends who I am yet to meet', SwissLet is running the London Marathon again this weekend - as before, sling him a few quid if you are able as he's running in aid of the MS Trust.

Sunday 3 April 2016

dog paddle, belly flop

Kind-of prompted by the woe-is-me whinging of the last post, I've just been swimming for the first time in bloomin ages.

I know that 10 lengths is hardly swimming the channel, but it is a start. 

It was quite funny - I haven't done any swimming since we were in Italy last year so I decided to go in the slow lane with two other people. For some reason the slow lane was right next to the one for people who think they're David Wilkie or even a swimmer from this century - Rebecca Adlington, maybe.

I didn't let it get to me and did my lengths slowly - the plan is to try to get the same amount done more regularly.

Looking for something to illustrate this post I found this, being very careful to make sure that it didn't feature any disgraced former TV stars of my youth - although I'm not too sure about the old fella at 0:34.

Thursday 31 March 2016

let's count the rings around my eyes

March is the time when I have my annual work appraisal - I've mentioned it on here a couple of times before. Usually it involves an intense period of handwringing (from me) before my boss tells me that things are going well and we talk about ways we can make things better.

This year was different. It's a very difficult time in the UK for businesses of any kind but maybe even more so for charities or non-profit organisations.

The place where I work is funded jointly by Arts Council England and our local city council. We have good relationships with both of our funders (as well as a healthy entrepreneurial streak) but money is tight all over.

As such we're having to look at every aspect of our business including people's jobs. Which is fine and healthy. But...

My appraisal was really difficult. It took three separate sessions before we got it sorted and things are ok now but the process was horrible.

My boss and I have shared an office for nine years - I might even say we were friends.

But it was hard not to feel like I was under the microscope - like it or not, there is something about me which sets me apart. It might be an invisible disability but it's still there.

My boss was keen to stress the respect he has for me, as well as the value of my work. But there was a lot of talk about targets and tasks, and being under intense scrutiny just adds to my paranoia. The conversation was difficult on both sides - I felt I was being attacked, he didn't want to be misunderstood.

I get the fact that it's a difficult time for a business like ours - but the talk about job descriptions and changing roles really got the alarm bells ringing.

I fact his main concern was for the business to be able to support me in the future, whatever shape my condition takes. But it took three sessions over one month (with many Dark Nights Of The Soul in between) to get to that realisation.

He has always found it difficult to talk about my MS. But the fact is, it doesn't affect my work. If I'm having a really bad day, I won't be in the office. As I've mentioned before, I rarely have any time off with illness - I don't want people to view me as weak so I'll "bravely soldier on", or something.

Anyway, long story short - everything is ok.

But I was a bloody horrible person to be around during the process. I've been lucky that depression has only had a walk-on part in my disease but this was some dark shit. And - as usual - the people closest to me were the ones to get it in the neck.

All the CBT stuff I did back in the day, the physio - every positive step I've taken just went out the window. I'm trying to claw things back but I'm thinking I might need to have some more therapy, maybe make some changes to my diet, start doing some proper exercise, stop making so many bloody excuses all the time. It's pathetic.

I'm feeling pretty fed up with myself right now so I'm putting this out there, almost as a dare to myself. I need to sort my shit out. And soon.

Monday 29 February 2016

eskimo, arapaho, move their body to and fro

In "little things please little minds" news, both of my new walking sticks bear the following sticker. They never fail to raise a smile:

Not only do I love the idea of the CEO of the company chuckling to himself when he thought if it (is it a tribute or a wry bit of mockery?), it also always reminds me "Mick Hucknall's Pink Pancakes". 

This is a fictional (for the moment) recurring programme from Charlie Brooker's masterful "TV Go Home": 
  • Mick Hucknall's Pink Pancakes, in which Mick Hucknall of Simply Red fame presses his testicles against various transparent surfaces, including shop windows, glass coffee tables and Chinese riot shields. Briefly succeeded by Mick Hucknall's Spud Tip Challenge, in which he quite simply balanced a baby new potato on the end of his penis.
Neither big nor clever, but you have to get your laughs when you can, right? 

Saturday 20 February 2016

illness, fatigue, depression

So those are the headlines! They're particularly annoying because when I last wrote I was at a three-day residential seminar on organisational development.

Which was, despite appearances, BRILLIANT.

This is due to four facts:
  • The women leading the course, and all the other attendees, were amazingly knowledgeable and inspiring.
  • The food was frankly ASTOUNDING.
  • Working in the cultural sector is excellent.
  • I'm actually *sotto voce* pretty good at my job.
I came back feeling totally inspired and re-energised (so much so that my dad asked if I was on drugs).
So it was particularly annoying that since then we got well and truly into the intra-family lurgy relay. Which led into the next two items on that list.

To cheer myself up I read a book my brother bought for me, Do No Harm by Henry Marsh.

Henry Marsh is a neurosurgeon, and the book is a collection of various stories from his career. Some of it is fairly graphic - his day job is spent slicing the tops off of people's heads, rummaging around inside and cutting out bits which are life-threatening, hopefully but not always without doing any lasting damage.

Mr Marsh has spent much of his career at the very top of his game but there are stories of patients who have been wrecked by surgery, sometimes at his hand. Even then he writes with a real sense of wonder at the magic which is the human brain:
I look down my operating microscope, feeling my way downwards through the soft white substance of the brain, feeling for the tumour. The idea that my sucker is moving through thought itself, through emotion and reason, that memories, dreams and reflections should consist of jelly, is simply too strange to understand.
I've always been the sort of person who can watch operation footage of pretty much any kind (I really can't stomach anything to do with the eyes, however) so the more graphic aspects didn't bother me.

It's a great book (although on a couple of occasions, he and his fellow doctors refer to MS in a way which made it sound like they thought it was a fate worse than a brain tumour, which was surprising to me. I know it's not a walk in the park but, y'know, I'm trying to keep my morale up over here).

Anyway, long story short - it made me realise that I've never seen the images from either of my two MRIs. Part of me REALLY wants to see them, although I hope it wouldn't kick in my latent hypochondria and make even more symptoms rise up.

So my question to you - have you seen your scans? How did it make you feel? Would you recommend it?

I don't know what I'd hope to acheive by seeing them, if anything. But knowing that somebody else has seen them is kind of weird. It's MY brain, after all.

TOP FACT I learned: the brain feels no pain. It's the engine which processes and translates feelings of pain from around the body but it actually contains no nerve endings. Which is why many brain operations can be done under a local anaesthetic.

Monday 18 January 2016

the thing with feathers

“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -

And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -

I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.

(Emily Dickinson)

BBC One - Panorama: Can You Stop My MS?

It's really hard to know how to respond to this programme - in a very real sense the stories seem so incredibly hopeful and positive, surely a cure can't be too far away now?

in brief

There has been a bit too much real life to have any time to post anything recently. Yes, it's the annual "sorry I haven't blogged for ages" post!

My phone is full of scrabbled notes of things I did want to post, however. So let's clear them up!
  • Thanks for the comments on my last post. Some of you will be pleased to know that, far from being retired, the sexy grey (Eastern Bloc) walking stick has now been joined by its twin. Double the sex appeal!
    Hilariously my love for these sticks was only increased when I saw that the company that supplies them is called SimplyMed. 
  • New Years Resolutions. I absolutely don't agree with them. However on New Year's Eve me and the divine Mrs D had a nice quiet night and went through some questions from a dinner party set - where was the best place you went to this year, that kind of thing.
    Although it sounds a bit like organised fun, it was really nice to look back on the year and everything we've done. Obviously there were some resolution sheets and questions about things we wanted to give up. As a mostly clean-livin' sort of fella, I've promised to GIVE UP LESS OFTEN. 
  • This was mostly prompted by watching my daughter. We had a couple of days in London over Christmas and she is SO FEARLESS and TENACIOUS. I genuinely don't know where she gets it from, being an "if at first you don't succeed, give up"-kind of guy. So there's that. Plus swimming more regularly, continuing with my physio, maybe even eventually the dreaded WALK TO WORK. Gah, that old chestnut. 
  • A couple of weeks ago, we had a meeting at work with an associate who I've met her a few times and always enjoy seeing - she's kind-of spiky and brusque but always good value. I was having a wobbly day so was walking with a stick and using the lift to get to the room. She clocked my stick and asked me what I'd done, I used my usual "it's just something I need to use"-line which I assumed would close it down. But bless her, she was like a dog with a sore tooth - she could not leave it alone. I took a seat while everyone else went off to drinks (as she travels up from London for our meetings she always eat through them as it's the only chance she gets). And she just would not let it go -asking my work colleagues for more information which made them very uncomfortable. Eventually they said that Steve has a long-term health condition which should normally have shut it down) but she kept pressing.
    Eventually, my colleague said that she was really uncomfortable saying anything but Steve has this THING and if she wanted to know more she should talk to him.
    Cue the associate steaming into the room, giving me a huge hug, apologising profusely and asking loads of questions.
    It was great but I'm just glad that I only used one stick on this occasion. God knows how she would've reacted if I'd gone in with both sticks blazing.
  • David Bowie died. It's been weird, I've never been so affected by a 'celebrity' death before, but this has floored me. What an amazing career, what an incredibly artful way to manage one's own death, what a legacy.
So that's that all cleared up. And the only reason I've got THIS done is because I'm on a Residential Course for my job - putting myself  "out there" a bit more for work and being more proactive is another resolution thing I've decided to do more of this year.

So now I'm going to sit and watch this Panorama MS special and probably have a bit of a cry.