Wednesday, 5 October 2022

Married to MS

Being Best Man is never without its stresses, but being a best man with multiple sclerosis gives you other matters to think about...


I’ve reached that age where some of my friends are onto their second marriage. When my closest friend decided to marry again recently he asked me to be best man. Of course, I agreed, even though the position usually leads to untold stress for the ‘lucky’ appointee. Stress isn’t great for those with MS, but what could I say other than, “I’d be delighted.”

Fortunately, it proved to be more of an honorary title. The stag do was organised without any input from me and he didn’t even want me to do a speech. Just greet people when they arrive, look after the ring and conduct a few toasts at the reception.

So not too much stress. Well, you’d think, wouldn’t you. Half a dozen attempts at tying my tie in the hotel room meant I was late for greeting people. Nothing to do with MS – my arms and fingers are fine. It was just that dressing smartly is way out of my comfort zone and I have to wrestle with a tie once every two years on average.

And the responsibility of the ring! I gripped it tightly in my suit pocket for most of the pre-reception drinks. All the while, I kept thinking about when I proposed to my wife-to-be on a barge in Paris. The box containing the ring was in the very tight trouser pocket of my jeans. As I struggled to pull it out from its hiding place, my hand shot upwards and I almost chucked the ring into the Seine.

What if I dropped this one as I tried to pass it to the groom and it went skittering across the floor into the long grass behind the outdoor stage, never to be seen again?

This scenario was what was playing on a loop in my head while everyone else was listening to the vows and enjoying the romantic occasion. Of course, when my moment came there was no ring mishap and I could finally relax a little.

My greatest challenge, however, actually began once the ceremony was out of the way. Spending time with my oldest friends with a drink in my hand on a manicured lawn on a sunny day at one time would have been my idea of heaven. Now this kind of socialising was coloured by the fact it involved a great deal of standing.

I had elected to leave my walking stick in the room. It would just get in the way and be one more thing to carry and worry about. So I had nothing to keep me upright other than my MS-addled legs. I was coping while we were stationary, chatting, but once we were ushered inside to the reception I became all too conscious of the fact that I was swaying like a drunk.

Being a best man who looked like he’d been hitting the sauce from early in the morning is not the look I was hoping to cultivate. Without a walking aid, guests who didn’t know me (and there were many of these) would have had no idea that I had multiple sclerosis. To them, I must just have been pissed, and possibly an alcoholic. Perhaps they just thought I had been trying a bit too hard to calm my nerves before my speech (which wasn’t even happening).

Whatever, I had to grip Kate’s hand as we walked in and was very grateful when we reached our seat.

The nerves did soon start again, as the time approached for me to do the toasts. Eighty pairs of eyes were about to be fixed upon me, waiting for a man with no history of or training in public speaking, to smoothly thank all the right people in the right order.

One of the groom’s sons did his best to distract me from my anxiety. He wasn’t acting like he was drunk due to illness. He was properly pissed out of his head. His attempts at cutting up his chicken were comical, as his head lolled and his eyes clearly strained to focus. He must have thought the chicken still had some life in it and was deliberately evading his knife in the hope of self-preservation.

I found this slightly less funny when thirty seconds before I was ‘on’, his fork skidded across his plate as he continued to battle his poultry and he proceeded to splatter gravy onto the three guests to his left. One of whom was me. The suit I had just spent fifteen quid having dry cleaned, along with the tie that was making its debut appearance all got a light dousing. Dexter would have been in his element establishing the source of the spatter pattern, if it had been blood and not gravy.

So I got to do my toasts while all the time wondering if my audience could see the spots of gravy on my tie. ‘Not really surprising that he’s spilt down his front. He was clearly drunk before we’d even sat down. But how did he manage to get gravy down the side of his suit? Poor sod.’

I think I did OK, though... for a pisshead covered in gravy.

*

For the evening do I knew I’d get tired. Fatigue mixed with the drinking of an afternoon session meant I would have to take my stick out with me. As always, it made me feel a little self conscious, but as alcohol took an ever firmer grip, I began to care less and less.

This was particularly true when I realised the advantages it was affording me. For example, when I headed down a corridor to get somewhere, people gave way to me like I was royalty.

And I always hated being pressured into dancing at a wedding. There were a few years back in the late 80s and early 90s when I quite enjoyed getting down to Goth and grunge anthems, but even before MS, as I got older, I generally felt uncomfortable whenever I found myself on a dance floor.

Cheesy wedding disco music was another thing altogether. This always had me running away screaming. Now I couldn’t run, but that was my 'getout' – every time anyone tried to get me up on the dance floor to get down to the cheesy music, I just reached under the table and held up my walking stick, coupled with a wan smile. “Of course, I’d love to, but it’s this friggin’ MS.”

But my friend’s wife had other ideas. She was in a dancing mood and even though she knows I have MS, she was not taking no for an answer. “I have no balance,” I said. “I’ll fall over.”

“I’ll hold you up,” she said, quite reasonably and very annoyingly.

“No, it’s a bad idea,” I protested.

But she was already hoisting me to my feet, which was some achievement as she is only short. I looked down at her from what seemed a very lofty perch. I mean, I always knew she was short but I was literally head and shoulders above her. I flirt with six foot but nothing more. She is very familiar with five feet.


What she lacks in inches, however, she made up for in grip. She was not letting go of either hand. I suddenly felt like Stephen Merchant dancing with a child, the type of dance you often see at a wedding – an adult indulging a toddler. It didn’t help that it was ‘I’m a Believer’ by the Monkees. I associate it strongly with the end of the first Shrek film, a film I watched on repeat with my son when he was pre-school.

Falling over now seemed like the better option. But she was holding on for grim death, something which also seemed like a preferable option to performing this pathetic and childish dance. All I could do was grimace and bear it, counting the seconds till it was over. Hey hey we’re the deeply embarrassed.

It finally moved onto the next song and she released me. I slumped back into my seat. What was the point of having multiple sclerosis if you couldn’t get out of dancing to songs you don’t like at a wedding? I guess she didn’t want for me to think I was being left out because of my disability, but I was actually thinking bloody brilliant. Another hidden advantage of having MS.

Oh well. One song in ten years is not much to complain about, I guess. And I’ll probably never dance again.

I bloody hope not.

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Wednesday, 31 August 2022

Walking Stick MS Trauma

AULD FAITHFUL TAKES A HIT


I usually only go on a dog walk if my wife, ‘Kate’, is coming too to keep me company. This has the added benefit that she does the bagging up of the dog’s crappage. Well it’s her dog and besides, I find it difficult bending down and picking it up. I need every joule of energy to make it through the walk.

It’s also awkward for me to do the deed because I have a walking stick in one hand. I admit, I’m not exactly fighting her for the right to do it but my excuses are genuine.

I decide to take the dog out on my own for once. Ellie hasn’t been out for a couple of days and I have a banging headache. Probably the result of another night of broken sleep due to the infernal twitching of my leg when I’m trying to sleep, but whatever, I crave some fresh air and need to get out of the house myself.

Ellie refuses to follow me to the front door. ‘Come on, y’daft dog. We’re going for a walk.’

This is another reason why I don’t like going for a dog walk on my own. Usually when I take her out alone it’s either to take her for her hair cutting or for her annual jab at the vet’s, both of which of course she hates. So I have to go back into the kitchen and drag her outside across the tiled floor.

We get in the car and I head to the park. This particular one is near the dog groomer’s and she sits shaking in the passenger seat the whole way, fearing another hair chopping is on the cards. ‘A walk. We’re going for a walk, y’stupid mutt,’ I say stroking her head to offer her some reassurance [legal edit: as I pull over in a safe place and am at a full stop and definitely not whilst I’m still driving]. In case you hadn’t noticed, your fur is still really short. You were only done two weeks ago. Do you seriously think I’d be taking you for another cut so soon at £30 a pop, I think, as she continues to tremble?

Thankfully, we soon arrive. Her paws go up to window level and she looks out. ‘See, I told you, a walk in the park.’

I leave her in the car while I retrieve my stick from the boot before opening the passenger door. She leaps out. Why she’s happy to do that yet insists you pick her up to put her ladyship back in the car is a mystery, but she seems to be undecided whether I’m the boss or just staff.

We head off and I’m soon able to let her off the lead. Another few paces and she begins circling, like she’s chasing her tail, which can only mean one thing – her first present is about to be delivered courtesy of her quivering arse. I don’t mind too much because she’s chosen a spot in the direct shadow of a bin, so I won’t have to carry it around with me like that scene in Borat where he comes back to the posh dining table carrying a little pouch after his toilet visit and announces, ‘I had a good shit’ (guess what’s in the pouch). Well I say I don’t mind, but that’s before I see it. All that nervous shaking in the car must have had an effect and her crap has the consistency of an unappetising mound of chocolate moose. Great. And these bags are not the thickest. I hate picking it up when it’s still warm too. I clear up a few in the garden, but they’re always cold, which seems to make the exercise more palatable, but hey, as a responsible member of society it has to be done, right?

Only this responsible member of society has the added complication of a walking stick in his hand, even though he’s still in his early fifties. There’s nothing to lean it on and I don’t want to put it on the ground. There’s still a thin film of water on the ground after the recent rain and I don’t want to get the handle wet, so I lean it against my groin area at the front of my coat. I open out the bag and lean down towards the light-brown-you’d-think-I-was-just-recovering-from-diarrhea mush on the grass. I look across at Ellie having the time of her life sniffing other dogs’ piss in the nettles further down the path while I’m having to do this savoury job. A man’s best friend? Right. My real best friend doesn’t take a dump in the park and wander off, leaving me to bag it up. Not often anyway.

Well here goes, I think wincing, but my motion is interrupted as I feel my walking stick fall from its angled position. I try to stop it but I fumble my attempt at catching it and only manage to affect which bit of wet grass it’s going to meet. Only it doesn’t come to rest in wet grass. The handle of my walking stick comes to rest, as you might have guessed by now, plum in the middle of the diarrhetic shit hillock.

Bugger.

AULD FAITHFUL

Irvine Welsh's serial shagger character Juice Terry calls his penis Auld Faithful. For me, it's a walking stick.

I hold onto the sliver of hope that maybe the handle is non-stick and will somehow repel this particular texture of shite but it seems unlikely. I lift it up (not by the handle obviously) and assess the level of disaster. Double bugger. If this amount was on toilet tissue in the bathroom, you’d know you weren’t going anywhere for a while.

I search my pockets for tissues. The double bugger is escalated to a for fucks sake. I have one small tissue. Before employing it, I wipe the shitty side of the handle in the long grass, then inspect the damage once more. By the end of this walk I’m going to be gripping this handle very tightly, so this situation is far from ideal.

I get to work with my scrap of tissue. Fortunately, the handle is very smooth on the sides so it’s not sunk into any kind of grain. I remember stepping in a great lump of it years ago in Caterpillar boots. The tread on those might give you a lovely grip of any surface, but it also means that any shite-goo has a thousand crevices and corners in which to hide. I spent over an hour with an old brush and a bucket of water cleaning it out. Pleased with my work once it was done, I walked into town, looking forward now to my night out in my freshly clean footwear. Only problem was, I managed to step in some more on my way to the pub.

On the shoe is one thing though. On the handle of your walking stick is another. I detect a metaphor here used to illustrate what it’s like having to use a stick to go for a walk when you’re not long past your 50th birthday.

I dispose of the tissue and finally bag up the dump-mound that caused all these problems in the first place. I’m able to make it the short distance to the lake that sits in this park without having to employ the stick, what with it being so soon in the walk, before my legs start packing up. I dip the handle in the water and swish it about. I catch my reflection in the ripples – a middle-aged man cleaning shit off his walking stick.

That’s right, I’m standing here. I can still see my face and the trees all around, the heron that’s coming in to land in the nest in the middle of the lake. I can hear other birds calling to each other. I’m moving my upper limbs freely. My balance may be bad but not so bad that I lack the confidence to stand so close to this water. I can still enjoy scratching the dog behind her ears. And I’m still able to walk a bit, even if I do need a bit of help and plenty of rests.

Satisfied that the handle is as clean as it’s going to get before I get home, I retrieve Auld Faithful from the lake and once again put one foot in front of the other.

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Sunday, 3 July 2022

The Only Thing Certain about a Future with MS is Nothing is Certain

RON’S VISION OF THE FUTURE


We’ve had to take on a gardener. With a brilliant sense of timing, we bought this house with its sizeable garden around three months before I was diagnosed. Now I can just about manage to cut a small lawn before my 52-year-old body collapses back onto the patio furniture. This constitutes around 2% of what needs to be done. It’s unrealistic to expect Kate to pick up the remaining 98%, as evidenced by vegetation spiralling out of control, so needs must.

Ron is fitter than me. And he’s seventy-odd. He makes your average dour Yorkshireman seem like Russell Brand, but he’s a hard worker. This makes me sad on more than one front: I hope I’m not having to scratch around for extra cash at that age and I’m also sad that even at my age I already can’t do what Ron does. God knows what I’ll be like when I’m in my seventies. Probably being wheeled out of the house so I can enjoy the garden, rather than having any pretension to tending it.

Of course, guilt has quickly raised its head on this, Ron’s inaugural visit. I’m bringing drinks to a septuagenarian like I’m the lord of the manor

and he’s some kind of Mellors character whose shagging days are long behind him. My feelings of awkwardness are exacerbated by it being a scorching hot day. During our verbal exchange on account of me delivering a cold drink to him – it’s too stilted to call it a conversation or even chat - I quickly have to slip in the information that I have MS and this is why I can’t do the work myself, not that I’m too moneyed (definitely not true) or too lazy (OK, partly true) to do it myself.

Ron sucks in this information like Boomhauer in King of the Hill. I wait for him to reply with, ‘Yup,’ like the taciturn friend of Hank Hill, or maybe he’ll go with a loquacious, ‘Can’t do much then?’ But no. Ron offers a nugget of information I wasn’t expecting to hear.

‘Hmm, my daughter has MS. Terrible disease.’

‘Oh right,’ I say. ‘When was she diagnosed?’

His face contorts into a pained expression. I wonder if I shouldn’t have asked, as maybe he’s still coming to terms with it, but soon realise that he’s just delving deep into his memory bank to remember.

‘Must be, erm… around twenty years now. Maybe just over.’

What he tells me next gets my attention.

‘Can’t walk at all now… Terrible disease.’

‘I’m sorry to hear that.’

And I truly am, but not for entirely unselfish reasons. I’ll be coming up to my twentieth anniversary soon and I’m not talking about the happy occasion of my marriage. I’m referring to when symptoms of multiple sclerosis first entered my life. It was four years afterwards that I was diagnosed. That means I’ll be catching up with Ron’s daughter soon in terms of timescale. Just two or three years. OK, let’s not panic. We all know that MS can affect people in vastly different ways and employ varying time sequences. Maybe she’s got secondary, or even primary. Maybe she had a major relapse, if it’s of the relapse-remitting type. I do a bit of digging, though not the type for which Ron is known.

‘Has she been like that a long time?’

What Ron proceeds to tell me sends a shudder through me that has been keeping me awake at night ever since. The pattern of his daughter’s MS has matched mine like the most terrible mirror image (think Ann Widdicombe staring at herself with self-loathing the morning after her latest bender) – she’s just been a couple of years ahead of me, even by age. For the first few years it barely affected her life. She had strange sensations in her limbs but was still able to get around fine and was even playing sports for a good while. But then she started to go downhill. Fairly gradually, but then in the last two or so years, everything’s accelerated and now, now she’s presumably in a wheelchair. I don’t get so far as to ask. I guess I’m too busy reeling from this summary of the woman’s life, a woman I’ve never met but whom I feel I have because her life is basically my life, at least if you hang it on these few details.

I gather my thoughts, which isn’t a pleasant experience in the circumstances. ‘I’d quite like to meet her if possible.’ I’m thinking some more details directly from her would be useful. Maybe she can somehow make the terror more palatable. Ron, however, retreats back into his flat-capped shell.

‘Aye,’ he says, in a vague, non-committal way. What am I to make of that? Certainly, I won’t be expecting him to be setting up a tête-à-tête any time soon. If I want to make this happen, I’ll surely have to badger him on several more of his visits. Maybe there’s no point anyway. Maybe she’ll just be a junior, female Ron and I’ll garner few, if any insights from her. Alternatively, she could be open and talkative and tell me lots of things that I don’t want to hear.

I’m giving it some thought on whether or not to pursue it, in between the waves of panic, depression and hope. The way my symptoms have progressed up till recently I was optimistic that I would at least get to retirement age before my legs completely packed up. But the last couple of years have seen an acceleration of my disability. Just like Ron’s daughter.

I’ve tried to raise my new concerns with some of the people close to me but been met with the predictable line of empty reassurance, ‘You don’t know it’ll go that way. That’s just one person. Your situation could be completely different.’

I know, I know, but listening to Ron’s description of the way things have gone for his daughter makes it clear that it’s a distinct possibility. My walking days may be numbered. And in years that number is two.

Or to put it another way, do you know that episode of Frasier when Frasier befriends a guy in a wheelchair? He soon regrets it because it turns out this particular disabled man is a crushing bore who’s obsessed with barbecuing. Frasier lives in fear of the approach of this man in his favourite coffee house, an approach that is always announced by the squeak of one of the wheels on the guy’s chair.

That’s how I feel right now. I can hear the squeak in the distance and I dread its approach. Unlike Frasier, I won’t be able just to scarper when this level of disability shows itself, because I’ll be physically incapable.

But what can I or the medical fraternity do about it? F all. My only defence is to double my efforts to make the best of what I now have. Let’s fill that diary and block out any noise I sometimes hear of an approaching squeaky wheel.

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Sunday, 26 June 2022

A Picture of Health (in the world of multiple sclerosis)

WE’RE GONNA NEED A BIGGER PILL BOX

Or a bucket.

When I can’t sleep at night because my leg won’t stop twitching – another wonderful symptom of having MS – I sometimes while away the time by counting up how many pills I take a week. Here’s a quick inventory:

40 to 50 Baclofen – to help control the aforementioned twitching. They work quite well but not all the time.

14 Levothyroxine – you’ll have to read the book to find out what that is all about.

7 One-Alpha calcium tablets – again, you’ll have to read the book.

14 Amantadine – to help give me a little more energy. They work up to a point but their efficacy is somewhat blunted by the fact the my sleep is so broken these day because of the leg spasms.

That’s up to 85 prescription pills. For a short time I was also taking Dantrolene for when the Baclofen failed to squash the spasms. That pushed my quota up to 99 for a couple of days before I had to sack them off because they were making me feel so rough.


Added to the mix are the non-prescription additives that are supposed to slow MS’s progression:

7 Vitamin D tablets

14 Omega-3 Fish Oil tablets

That pushes my pill count over 100 in any given week. Is that normal? Maybe if you have HIV or a serious heart condition. I recall a scene in Gone Fishing with Paul Whitehouse and Bob Mortimer where Paul was lining up all the pills he had to take each day. There were around a dozen. I imagine most people were thinking, ‘Wow, that’s a lot of pills.’ I just thought about how many I take and inwardly pretended that I didn’t understand the point they were trying to make. ‘Yep, looks totally normal to me.’

Of course, added to this pharmaceutical soup is the fact that I  stick a needle in my leg on a regular basis. Yes, if the pills weren’t enough, I inject myself with Brabio three times a week. It’s supposed to reduce the number of relapses I might suffer otherwise, therefore reducing the threat of further disability. It took around three months to get used to that one, mainly because it led to a stinging pain around the injection site like a wasp had done its worst. Now it’s just another part of the bedtime routine. As much pain and side effects as brushing my teeth.

Some people don’t like the phrase ‘the new normal’, but I can’t think of any other words that sum up these aspects of my life better.

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Wednesday, 22 June 2022

I'm a Man. Well, technically I am.


Hi, there. If you get the cultural reference of the title above, we're already on the same page, so that's good.


So a bit about myself: I've worked as a copywriter and quality controller for more years than I would have liked and I regularly contribute to a number of podcasts, such as 'Adrift' and 'The Jason Manford Show'.

My symptoms of multiple sclerosis first started appearing in 2002 and MS of course continues to be a pain in the arse, but I'm still walking and clinging to the coattails of a positive attitude.

I love books, music, history, popular culture and football.

I live in West Yorkshire with my wife and son, though he'll soon be off to uni.

What more do you want to know? If you read my book, 'Balls to MS', you'll feel like you know me inside out by the end. So I would suggest doing that.

As well as exploring this website, you can also follow me on Twitter, Instagram and Facebook.

T: @andy_reynard

I: @balls_to_ms

F: Balls to MS

Saturday, 18 June 2022

I'm Not Drunk. I Have Multiple Sclerosis

DRUNK DRIVER


A way to squeeze a little entertainment out of having MS is to pretend that you’re a drunk driver. Occasionally, I might walk a short distance without my stick. This usually means that by the time I approach my car, I’m staggering and swaying from side to side. Like a drunk.

If I’m in a car park or on the street, there’s always likely to be someone around who is watching this legless buffoon. I imagine their internal dialogue: ‘Oh my, he appears to be using his car for support now. How pissed is he? Please tell me he’s not about to attempt to drive it. Oh God, he’s getting in…’

Of course, by the time I’m seated, I’m fine with driving. No problem at all. There’s nothing wrong with my arms and the car is automatic so I don’t even have to depress a clutch. As I depart, however, I often can’t resist swerving from side to side a little as I leave the car park, just for the benefit of my audience.

Yes, I realise there’s nothing funny about drink driving but when you have a chronic condition that stops you being able to walk very far without your legs turning to barely-set jelly, you have to take your kicks where you can.

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Tuesday, 12 April 2022

Ramblings on Living with Multiple Sclerosis

REASONS TO BE CHEERFUL (DESPITE HAVING MS)

No.5


I was diagnosed just as the age of the smartphone was dawning


One of the most frustrating features from the list of annoyances that MS has brought into my life is the difficulty I have with the task of peeing. Simple, straightforward, something done without thinking for the healthy individual. Anything but for the MSer. Some live in fear of pissing their pants. Must be awful. Others, like me, face a different battle; the fight to get pee from the bladder into the toilet.

You tell people about your difficulties but you get the feeling that they don’t really understand, right? How could they? It’s as automatic to them as breathing. They don’t stand there over the toilet at four o’clock in the morning, desperate to go but unable to go, longing to get back into bed but knowing that this task has to be completed before that can happen.

It’s a very lonely place that requires all sorts of bizarre techniques to escape i.e. various stances, facial expressions, stimulation of nerves, to try to get a connection that will allow your brain to unscrew whatever valves need loosening to get that piss out of you.

But, during the day, there have been some unexpected benefits. Not long after I was diagnosed, Apple launched the first iPhone. I resisted the smartphone for some time but eventually succumbed. Now my phone is an invaluable companion to my toilet visits. I realise that many men like to have it with them for their sitting down time but I bet not many feel such a great need to have it with them for their number ones. I prop it up on the cistern and settle in for some quality reading. Emails, social media, even books. I have the Kindle app on my phone and I’ve got through all sorts of titles in this way – books that I would otherwise have struggled to find the time for.

Before I joined the smartphone revolution, I was restricted to playing very crappy golf games on my Sony Ericsson and that was mostly for sitting down time. My peeing problems weren’t too bad then. Now I can be there for a full five minutes trying to discharge my cargo. Maybe that doesn’t sound that much, but if you’re lucky enough to have no problems in that area, try timing how long it takes for you next time you go. Maybe a couple of seconds to start, then another twenty to completely empty yourself? It can take me five minutes just to squeeze a drop out.

Having something to distract myself, to immerse myself in that diverts my thoughts from the fact that peeing is still not taking place is a significant help. I’m certainly more well read. I bet, though, that when these authors were sweating blood as they carefully crafted their words, they never thought they would be getting read by a man who was standing over his phone with his cock out.

If that’s how people choose to read by book, Balls to MS, I’m cool with that. Being read is being read. If you haven’t already, buy a copy today.

TAKE ME TO AMAZON LISTING

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Wednesday, 30 March 2022

Old Man/Wobbly Old Lady - the Many Faces of Multiple Sclerosis

TWO SOUPS!

If you’re British and of a certain age, you may remember the Two Soups sketch from one of Victoria Wood’s comedy shows. I could only find this clip on YouTube 


which gives no more than a flavour of it, but in it Julie Walters plays a doddery, unstable waitress. She takes an age to shakily walk over to the customers seated at their table, writes down the order for two soups, then takes another age to walk back to the kitchen. When she finally returns carrying the soups, much of the contents of the bowls is spilling onto the carpet as she once again infirmly crosses the floor to the diners. By the time she reaches them, most of the soup has been shed, but she happily places the bowls on the table with the cheery proclamation, ‘Two soups!’

How I laughed back in the 80s, in my pre-MS days, at this impression of an infirm waitress. It doesn’t seem quite as funny now that I am that doddery person. Whenever I’m carrying a tray of food, particularly if I’ve been on my feet for a while preparing that food, I have to use all my concentration to step carefully across the short distance involved in order to avoid introducing my dinner to the floor. If we’re eating in front of the TV, that even involves a treacherous three steps down to the living room. I’ve managed it without disaster up to now, but rarely feel confident enough to add a drink into the mix, so another trip to the kitchen is required to pick that up – a trip by this time that I could really do without.

I think Julie Walters must have used her bad waitress character as inspiration for her long-running role as Mrs Overall in the Acorn Antiques sketches. When I’m bringing a meal to my wife and pots are clinking together as I totter towards her in a game of MS Jeopardy, the jovial cry of, ‘Here she comes, Mrs Overall,’ is often heard. Mixing my comedy characters, I breathe a sigh of relief as the tray safely makes it onto the table, before celebrating with a breezy cry of my own, no matter what the nature of the meal: ‘Two soups!’

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Sunday, 20 March 2022

Prematurely Age the Easy Way With Multiple Sclerosis

MIDDLE-AGED MAN POSSESSED BY SPIRIT OF 83-YEAR-OLD


I strive to be a good son and phone my mum and dad once a week. Sometimes I fail in this modest quest but if not, the first twenty minutes of the call are usually taken up with a health questionnaire, as we exchange news of how we’re all doing physically.

I used to despair of older people who seemed to revel in discussing their health issues whenever they were in a social setting. Did folk who had reached a certain age simple run out of interesting topics of conversation, so had to resort to listing their various illnesses and the medications they were using to treat them?

Now I understand. When your body stops running exactly as you would wish those health problems can soon come to dominate your life. So we get that part of the chat out of the way off the bat. That way, we know from what kind of playing field we are operating.

As I write, my mum is 86 and my dad is 82. Obviously at their age, they have various health problems but considering they’re both in the eighties, they’re not doing too badly. They’re both starting to feel it, though. They’ve both been pretty active up to now but are starting to struggle. They regularly go back to bed not long after breakfast and perhaps have another nap in the afternoon.

My dad often complains about the fatigue he feels. ‘Yes, it’s so frustrating, isn’t it,’ he tells me. ‘When you’re used to doing stuff but you can’t do that much anymore.’

‘Yes, Dad, very.’

‘You have a list of jobs you want to do around the house and you just can’t do them.’

‘Aye.’

I try to sympathise with his frustrations but my mind keeps coming back to a single thought:

DAD, YES, I’M SURE IT’S FRUSTRATING FOR YOU THAT IN THE LAST YEAR OR TWO YOU’VE STARTED TO REALLY STRUGGLE TO KEEP UP WITH THE GARDEN AND YOUR DIY BUT YOU’RE IN YOUR EIGHTIES. I’M SORRY, I KNOW IT’S NOT NICE BUT IT’S TO BE EXPECTED. ALL THINGS CONSIDERED, YOU’RE IN PRETTY GOOD NICK. I ON THE OTHER HAND AM ONLY IN MY EARLY FIFTIES. WHEN I COMPARE WHAT I’M CAPABLE OF DOING WITH YOUR PHYSICAL CAPABILITIES I REALISE THAT I BASICALLY HAVE THE BODY OF AN 82-YEAR-OLD. ESSENTIALLY WE HAVE THE SAME MUSCLE STRENGTH BUT MY LIMBS ARE THIRTY YEARS YOUNGER THAN YOURS. WE MIGHT BE THE SAME BUT IT’S NOT THE SAME.

‘So, how are you doing?’ he asks me. ‘Are you sleeping better? Have you any more energy this week?’

‘Same old…’ is how I usually reply. I may have slept better a couple of days; or my insomnia, fuelled by MS-related leg twitching, may have known no bounds. The MS will almost certainly be the same as seven days ago. It’s only when I think back to twelve or twenty-four months in the past that I realise I’ve descended the greasy pole of disability significantly more. The process was just so slow as to not be particularly noticeable as it was happening. And besides, I can’t really be bothered to answer in detail. There’s nothing family or friends can do and there’s only so much sympathy that can be given or taken. After twenty years of living with MS, all parties start to run out of things to say. In my experience anyway.

I don’t say much else. We talk about other family news. My brother-in-law had a hip replacement recently. He’s still struggling. For years he’s had difficulty walking and even putting on his shoes. The single hip replacement hasn’t helped that much. I try to focus on his problems. He’s probably more disabled than me at the moment. But he’s having his second hip replaced next month. All being well, he’ll be like a new man. Not quite the man he was in this twenties, but much more able. Certainly more able than me and he’s four years older.

So of the three men in our family with serious walking difficulties, one is  82, so it’s to be expected, one is 57 – he’s had a long ordeal but will soon hopefully be cured to a great extent – and the other one… well he’s 53 and there’s nothing good on the horizon. His walking difficulties are only likely to get worse. At what pace, we don’t know.

Balls to it, what ya gonna do, shit happens. When I’m 82, if I get there, I hope I can still remember the days when I could do jobs around the house. I hope that time in my life hasn’t faded into a dim and distant past.

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Wednesday, 16 March 2022

Ramblings on Living with Multiple Sclerosis

REASONS TO BE CHEERFUL (DESPITE HAVING MS)


No.4


I’m able to appreciate all the things I can still do all the more


MS has robbed me of much that I held dear, as well as making some bodily functions that I never previously gave any thought to considerably harder. I really miss being able to play sport and not having to think about how long I’ll be able to do something before I have to stop. I miss my urination reflex, being able to just whip it out and go. I miss having a good night’s sleep, without my leg twitching, keeping me awake. And I miss going for a walk without the company of a walking stick.

But does MS restrict my everyday life all that much? Not really. I’m fortunate in that I do a job that involves nothing more than sitting at a computer all day. TV doctor Michael Mosley says that the chair is the killer and the amount of time we all spend seated these days is making us very unhealthy, but in my case I beat the chair to it. I’m already unhealthy thanks to MS and the chair has been my saviour. When I finally get up at the end of the working day I’m still able to cook some dinner or maybe even take the dog for a brief walk, albeit with the aid of the aforementioned stick. Then I can spend the evening watching TV, listening to music or reading. And at the weekend I’ll be watching my football team like every other weekend.

The point I’m making is that I can still enjoy many of the activities that I hold dear. I’m not into inspirational messages, as there’s never a one size fits all experience, but you’ve got to think about what you still have, not what you’ve lost, right?

I’ve just realised that what I’ve essentially said is, ‘Count your blessings.’ How trite, clichéd and annoying. I used to hate it when older people said it to me in my youth. But then I had my whole life ahead of me with its endless possibilities. Life feels a little smaller now. Another by-product of MS, as well of hitting middle-age. Oh well, I’m given to counting them sometimes, even if it’s just to try to help me get to sleep when my bloody leg won’t stop twitching in the middle of the night.

Maybe you count them too at times. I hope so.


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