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 50^th 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.

[TO READ FURTHER POSTS, CLICK ON THE ARCHIVE AT THE TOP RIGHT OF THE PAGE ON DESKTOP, OR THE HOME BUTTON AT THE BOTTOM OF THE PAGE IF READING ON A PHONE]

[To order Balls to MS: 20 Years of Discovering Your Body Hates You, follow the link below, where you can also read reviews.]

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.

[TO READ FURTHER POSTS, CLICK ON THE ARCHIVE AT THE TOP RIGHT OF THE PAGE ON DESKTOP, OR THE HOME BUTTON AT THE BOTTOM OF THE PAGE IF READING ON A PHONE]

[To order Balls to MS: 20 Years of Discovering Your Body Hates You, click the link below, where you can also read reviews.]

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.

[TO READ FURTHER POSTS, CLICK ON THE ARCHIVE AT THE TOP RIGHT OF THE PAGE ON DESKTOP, OR THE HOME BUTTON AT THE BOTTOM OF THE PAGE IF READING ON A PHONE]

[To order Balls to MS: 20 Years of Discovering Your Body Hates You, follow this link - ORDER NOW]

Wednesday, 22 June 2022

Am I a man? Yes, 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. If you don't, that's OK too (it's from a Flight of the Conchords song).

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: 20 Years of Discovering Your Body Hates You, you'll feel like you know me inside out by the end. So I would suggest doing that. It's been getting a very good reaction from readers (see the reviews on Amazon).

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.

[TO READ FURTHER POSTS, CLICK ON THE ARCHIVE AT THE TOP RIGHT OF THE PAGE ON DESKTOP, OR THE HOME BUTTON AT THE BOTTOM OF THE PAGE IF READING ON A PHONE]