Ramblings on Living with Multiple Sclerosis

REASONS TO BE CHEERFUL (DESPITE HAVING MS)

No.3

I can park close to the shops and most times it’s free

I resisted it for a long time but in the end I had to admit the need for a blue badge. My name is Andy and I’m disabled. That was a hard one to accept but the blue badge was that state of affairs rubber stamped. Rather than the fact that I’m a blue badge holder, I prefer to think of the episode of The IT Crowd where Roy uses the disabled toilet before pulling the emergency cord, thinking it’s the flush, then has to pretend he’s had his wheelchair stolen. ‘I’m disabled!’ he squeaks to the concerned staff, who wonder how he’s had his wheelchair stolen while he’s in a locked toilet. [IT Crowd 'I'm Disabled' link]

‘I’m disabled!’ said in the same silly high-pitched voice as Roy is exactly what came out of my mouth when I got that piece of plastic through the post. I guess I was deflecting some of the pain I felt at having it confirmed in such incontrovertible fashion by summoning up what in my opinion is one of the funniest sitcom episodes ever.

Also softening the blow was the picture on my shiny new blue badge. I found an old passport photo in the back of a drawer from my wannabe rock star days. I stared at this youthful face framed by long hair (a stranger once told me I looked like Kurt Cobain – surely one of my proudest days) and couldn’t help viewing my carefree pre-MS expression with something akin to dismay. I realise there was no way of knowing what was on its way, but why did I have to waste so much of my youthful, healthy years on hangovers and bad fashion choices. If only I’d have known, I’d have tried to be awake for longer, made the most of every minute and not belly-ached about so much small, inconsequential crap.

And yes, I know you’re supposed to use a recent image, but it wasn’t that long ago and still looked like me and how often do you like a passport photo of yourself? And I have to admit a tiny thrill at the thought of a ticket inspector examining the badge and thinking, ‘Hey, this disabled guy looks cool.’ Me? Shallow? How very dare you.

Anyway, that was my first disabled badge. I’m onto my second now and for this one I did use a recent photo that displayed every line from my fifty-two years. It amuses me to imagine it’s the same person who administered my application this time around. She would, of course, remember me from the first ‘Kurt Cobain didn’t really kill himself he’s alive and well and living in Yorkshire England, my he’s still hot’ application and she would think, ‘Jeez, the last three years haven’t been kind.’ Perhaps you shouldn’t have put me through the stress of a physical examination to check I was still deserving of a blue badge, like my MS is going to get better.

They of course agreed I was disabled – the evidence was pretty clear – and I still get to park in prime spots in the town centre in most places across the country and without even paying for the privilege [legal edit: if it’s council run and the council has a reciprocal policy for people out of the area, which most do]. Well there has to be some benefits, right? When I went away to York recently, a city where parking is generally an expensive nightmare, I was able to leave the car on the street immediately outside the hotel all weekend and it didn’t cost me a penny.

That’s the type of thing that makes me happy to utter those two words that I resisted saying for so long and to utter them in a high, loud and silly voice:

‘I’m disabled!’

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Ramblings on Living with Multiple Sclerosis

REASONS TO BE CHEERFUL (DESPITE HAVING MS)

No.2

I don’t have to feel guilty about not attempting a ridiculous physical challenge unbefitting my age.

Gordon Ramsey completed an Ironman race in his late forties. In my eyes, that’s another reason to dislike him. Certain middle-aged men love to show off their ability to hold back time. Marathons, three-peak challenges, extreme triathlons… yes, we get it, you’re still fitter than many folk in their twenties and you’re a real man.

That’s not me. Well I am a man, only I’m a man who has had multiple sclerosis for twenty years. If I was free of this chronic condition would I too be attempting one of these physical trials? Of course. I’d be chomping at the bit. Try and stop me. It’s just this blasted MS, you know.

All right, I admit it; much as I miss being able to play five-a-side football and tennis, pushing my body to the limit is not my idea of fun. I get to do that two or three times a week at the moment anyway, as a result of my personal situation. A short dog walk, even with the aid of a walking stick, or twenty minutes of gardening are all it takes for me to hit the wall. No need for a marathon for this particular middle-aged man.

So I don’t have to give any thought to whether or not I should do one of these challenges. No need to feel inferior or guilty. MS has removed that need to prove my worth.

For the same reason, I won’t be attempting any charitable exploit in the near future that involves any kind of physical test. That photo of me at the top of Kilimanjaro will not be getting posted on my Facebook site any time soon.

Oh for flips sake! Who’s this guy in the news? Captain Tom? He’s 100 and he’s forcing his way round and round his garden to raise money for the NHS. Is it churlish of me to be annoyed by his exploits? I sometimes feel like I’m 100 and I thought that gave me a free pass from this kind of thing. I guess not. Bugger.

(RIP Sir Tom)

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Finding a Funny Side to Multiple Sclerosis

Balls to MS, the memoir, is now available on all major online bookseller sites, including Waterstones and Amazon. Check it out and buy, rate, review. Through this website, you can also get in touch if there’s anything you’d like to say, but please be nice – I’ve enough to deal with already.

Balls to MS OUT NOW - Take Me There

Click HERE to read the back cover blurb of Balls to MS.

Author Profile: I’ve had relapse-remitting multiple sclerosis for most of this century. It’s probably progressed to secondary MS by now. It certainly feels like it. I’m still walking but with greater difficulty each year. As they were fond of saying in The Sopranos, though, what ya
gonna do?

What I do is I write about it. I don’t do inspirational messages but I do strive to look for the positives in the situation in which I find myself and most of all, I look for the laughs. I hope you can find them too on this blog.

Writing CV: For many years, I worked as a freelance copywriter and proofreader, which led to such projects as writing children’s activity books for Marks & Spencer and reviewing pubs (I know, but someone had to do it).

More recently my work has featured on several funny podcasts, such as Adrift with Geoff Lloyd and Annabel Port (six Drifter stories read out so far as I write this), The Jason Manford Show and Top Flight Time Machine. If you insist on proof that my writing can make people laugh, click HERE to see a list of my podcast contributions, all still downloadable.

One More Thing:

If you or someone you know has this mysterious, frustrating, cruel condition, I invite you to join me in saying, ‘Balls to MS.’

 

Andy Reynard

September 2021

 

Audio Outings for My Writing

Below is a list of podcast stories/contributions that I've had read out to date. At some point I might be arsed to actually edit them all down and have them all ready for you to listen to, but you're a grown up right? You've downloaded a podcast before haven't you? All of these are still available. I've put the time that my words are on each show so they're easy to track down.

The Adrift stories in particular helped me to hone the style I was to use in Balls to MS. It also had the happy by-product of providing me with an advocate for the book. The co-presenter of the podcast, Annabel Port, was a presenter on Absolute Radio for years, providing comic contributions to Geoff Lloyd's shows, so she knows comedy. On the back of having a few stories read out, I contacted Annabel to ask if she would read an early draft of my book. She very kindly agreed and her encouragement – let’s face it, mainly the fact that she assured me it wasn’t shit – and her willingness to provide an endorsement spurred me on to complete the project.

Anyway, here is the irrefutable evidence - yes, irrefutable, so don't bother trying to refute it - that I can write amusing stories about life and our erratic attempts to negotiate it.

Adrift

Episode 96 - 8.20 mins in

Episode 100 - 12.50 mins in

Episode 112 - 10.30 mins in

Episode 128 - 13.15 mins in

Episode 161 - 11.40 mins in

Episode 186 - 10.25 mins in

The Jason Manford Show

12^th July 2020 – 14.10 in

Top Flight Time Machine

The Hippie Conundrum – May 7 2021 – at the start of the episode

If you'd like to contact me, I'd be happy to hear from you, particularly if it's to tell me how much you like this blog and how you can't wait for the release of the book.

Or you can simply contact me to have a moan about multiple sclerosis. Up to you.

The email address is andy@ballstoms.com

Balls to MS - the Memoir about Living with Multiple Sclerosis Out Now

'Moving, yes, but also laugh out loud funny.'

Annabel Port, Adrift podcast and former Absolute Radio presenter

20 Years of Discovering Your Body Hates You

Andy Reynard has had multiple sclerosis for most of this century and to be honest, he’s a bit annoyed about it. In this irreverent account of how the condition has steadily crept into his life, we learn that his brain is a murky, chaotic place and that using popular culture references is sometimes the only way he can make sense of it all.

We also discover that his body is a bastard because shortly after his MS diagnosis his thyroid became ridiculously overactive, the bizarre treatment for which made him radioactive and dangerous to know.

Then things got serious, as he was given the news that another health crisis meant his life was under threat – and as this news was delivered by the super-hot Dr Amalia Gonzalez, he was in a state of arousal at the time.

It’s certainly been a bumpy ride and his body continues to offer new and interesting symptoms of MS for him to enjoy, but he’s survived at least. All he can do is keep clinging to the words of the wise philosopher who succinctly declared, ‘Shit happens.’

Ramblings on Living with Multiple Sclerosis

REASONS TO BE CHEERFUL (DESPITE HAVING MS)

No.1

Licence to be a lazy bastard / I can get out of doing all sorts of jobs that I don’t want to do.

Household chores, DIY, gardening… no, sorry, no can do. I’d love to but I’m just not physically up to it. Of course, it can be frustrating when you just want to get some tasks ticked off your list, but it’s also frustrating when you want to get on with doing things that you actually want to do, like writing your blog or your book, and you feel like you should put that washing out or cut the lawn first. In that pre-MS life, by the time you’ve worked your way through your list for the day, you realise that there’s no time to do that bit of writing you were looking forward to doing.

MS gives these duties a finality. You can only occupy yourself this way for a limited amount of time and even if you wanted to carry on, you wouldn’t be able to. Time for a nice sit down.

Now let’s get this laptop fired up.

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Read Samples of 'Balls to MS'

Below is one of the later chapters of the book. It's one of the few that requires no real contextualisation. It stands on its own two feet, rather more steadily than me, I think.

AUG 2018 – THE BOUNCER

After the meal, we decide to grab a drink at a new bar around the corner. I say new, but refurbished and renamed would be a better description. I remember it as the Buzz Bar nightclub and before that, in the eighties, it had the very eighties name of Sloanes. Some of my formative experiences with the opposite sex took place in those establishments. Teenage parties in Sloanes, praying a girl might be interested in a pale, moody goth, and in my grungy twenties, hunting the three floors of Buzz Bar for talent, like a horny Kurt Cobain. I’d slip away from my mates for ten minutes while I raced up and down the stairs in a shallow examination of the female clientele, scanning the room for a potential love match. In a pre-Internet age, my rapid circumnavigations of Buzz were, I suppose, like an early version of Tinder, just one that involved a lot more leg work.

Thirty odd years later, here I am heading for the same place, only now I’m hoping there won’t be any stairs and that I can make the short distance from the restaurant to the bar. I clutch my wife’s hand tightly, as I’ve left my walking stick at home. I still don’t like being seen with it on a night out and we had no intention of walking anywhere tonight anyway. But the meal took less time than we expected and we thought we would check out what they had done with the old Buzz Bar/Sloanes, as it was nearby.

Nearby for your average person is not my nearby, however. We’re only halfway there and I’m struggling. Whenever my legs pack up on me and I’m walking hand in hand with Kate, I’m put in mind of the chimps that you used to see on TV variety shows in my childhood. Dressed in a tutu or similar, it would be walking upright, holding the hand of someone, or on occasion another chimp, who would be dressed in dungarees and also walking upright. Their bowlegs and awkward swaying gait would have the audience howling with mirth, as if we had not evolved one iota from the crass behaviours of the Coliseum crowds. But I fear that’s what I look like in these moments. I will often make a couple of chimp noises to try and deflate some of my frustration with humour, generally with limited success.

At least the chimp and his handler have now arrived. We approach the bouncer on the door, ready to nod, ‘Evening,’ but events take an unexpected turn. As Kate lets go of my hand and brushes past him with a smile, the guy places his arm across my path. “Sorry, pal. Not tonight.”

“Eh?” I squeak.

“Sorry, pal. I think you’ve had enough for one night.”

I laugh and roll my eyes, as it dawns on me what is going through his mind. I hope my expression is disarming, but the way his eyebrows are knotting on the bridge of his nose suggests otherwise.

“I can explain...” I say, about to explain, but he cuts me off.

“No need, not a problem. I just can’t let you in. I’m glad you’ve had a good time tonight but it’s not carrying on in here.”

Part of me is feeling like I no longer want to enter anyway. His manner is overly aggressive and is not putting me in the mood for relaxing with a beer. Kate then turns round, wondering what the cause of the delay is.

“What’s going on?” she asks, as she sees the bouncer and his broad arm barring my way.

“He thinks I’m drunk. I was just about to tell him...”

“He’s got MS!” she blurts out, laughing, preventing me from explaining for a second time. At least she didn’t say M & S. She used to work for them and I’d been diagnosed five years before she broke the habit of calling it M & S. “He has problems with his legs,” she adds, flashing a smile that is no doubt considerably more disarming than anything I could ever manage.

I expect he’ll feel pretty foolish now and I wait to hear him apologise profusely. I will of course be magnanimous, as I tell him it’s no problem at all, no really, don’t worry about it, it’s fine. I am therefore somewhat surprised when his face emits further hostility.

“Well how am I supposed to know that?” he spits.

I’m so taken aback that I find myself still spouting the words I had prepared. “Don’t worry about it, it’s fine, not a problem,” but my sentiment is not imbued with the same level of magnanimity. He finally stands down and I step past him. Kate is certainly seeing the funny side and, in a way, I am too. But mostly I am just puzzled. It was an honest mistake that anyone could have made, but his reaction to the truth of the matter was bizarre. Maybe he’s full to the eyeballs on steroids and is incapable of reacting to any situation with anything other than belligerence. Existing on the cusp of a verbal explosion due to chemicals in the system is something to which I can relate.

“Can you believe that guy?” says Kate. “Trying to bar chimps, in the twenty-first century!”

I bow my legs and curl my arm over my head like I’ve seen chimpanzees do on TV. “Oo, oo, oo.”

She shakes her head. “Don’t do that in here please.”

I stand up straight and scour the bar for a free stool, chair or sofa. The place is packed and sitting down appears unlikely. If I had come out with my walking stick, I would have waltzed, OK limped past the bouncer without any issue and now someone may well be offering me their seat. As it is, I’ll just have to lean all my weight on the edge of a table.

Yes, maybe I’ll come out with the stick from now on. Maybe it’s time for me to accept that I’m disabled.

Living with Multiple Sclerosis in Photos

Back of my original blue badge. I felt better about the whole thing for using an old photo from my halcyon days.

 

As featured in the chapter Three-legged Man Acquires Four-legged Friend. I figure everyone likes a cute dog, so why not (that's a Schmackos by the way - she doesn't have a weirdly rectangular tongue).

A taste of the pills I consume on a weekly basis. The one on the left is Baclofen that helps to control the spasms I experience in my legs, a relatively recent symptom of the MS. Only really get them when I'm tired and trying to sleep or relax. Body, you really are a bastard that hates me.

I only take around 50 a week of the Baclofen. Add that to the 21 tablets I take every seven days due to the thyroid problems detailed in the memoir, the 14 that are supposedly to counter the MS fatigue and the 14 cod liver capsules I take, as fish oil is thought to be a good supplement if you have MS, and that's 99 tablets a week. Don't forget the squirt each day of Vitamin D though. Again, thought to be a good idea for those with multiple sclerosis. So that tips me over into three figures.

Everything completely normal. Nothing to see here. Move along please.

*

Almost forgot. I stick one of these in my leg three times a week too.

Brabio is supposed to reduce the possibility of relapses that could do further damage. I was on Avonex for years. That was only once a week, but the needle was more fierce i.e. bigger and the side effects greater. This one is child's play in comparison. Still not fun mind.

Irving Welsh's colourful character Juice Terry (Glue, A Decent Ride), who lives for bedding as many women as he can, calls his penis Auld Faithful. As a man in his early 50s with MS, this is my Auld Faithful. Hey ho.