Elf and wellbeing

In 2019, I fulfilled a lifelong travel dream when my wife surprised me by booking a few days in Iceland. I’m a geology graduate and although my degree was a long time ago it was still a big thrill to be standing on the mid-ocean ridge surrounded by a ‘young’ basalt landscape. In fact I defy you to find an Earth scientist geologist, or anyone with a passing interest in rocks who wouldn’t jump at the chance to spend some time there.

Even though we were scooting along in our little Toyota Yaris hire car under the frown of recently extinct volcanoes, past filthy looking glaciers, and over black sand deserts, we often found ourselves remarking on the similarities between Iceland and Ireland. We have family connections to the Emerald Isle, so we’ve spent a considerable amount of time during our married life visiting various tucked away corners of western Ireland.

I guess both countries have a link to the past that we in the UK experience differently with our proximity to the European mainland and our history of exploring and exploiting the globe. Politically, both countries have achieved independence within the last 100 years or so, both countries have native languages that no-one else in the world speaks, and both are less densely populated and have a smaller scale farming landscape than what we’re used to in the UK.

But there’s something more deep seated as well. I know it’s the 21st century; I know no-one believes in this sort of thing anymore, and I know it’s generally something that is wheeled out for the tourist more than anyone else, but I’m going to say it:

“fairies”

or should I say…

“elves”?

It seems that the children of both countries have grown up being told similar folklore and I guess it’s a really good way of teaching your kids not to venture too far in a largely rural landscape: not to speak to strange people they find wandering about, and generally not get into mischief for fear of getting into trouble with “the little people” (Ireland) or “the hidden people” (Iceland).

When we dropped in, on a local’s recommendation, to the cave people of Laugarvatnshellar – a cave dwelling that has been recreated for tourists after being abandoned at some point in the 20th century – I thought I’d point out the similarities to one of the tweeded chaps who showed us round. I made reference to a story I’d heard on a Simon Reeve travel documentary about a road that had caused a small but vocal minority of anti road protesters to call for its re-routeing due to its proposed course apparently running straight into the path of a ‘fairy tree’.

Smiling and nodding, the pre-war garbed young fellow told us a similar story of a road near Reykjavik whose course had apparently run into a large boulder occupied by elves. An old man with a long grey beard had been wheeled out to talk to the boulder’s residents and ask if their home could be moved. The elves had apparently said “yeah, OK”, the elf-whisperer had picked up his cheque, and the engineers picked up the boulder and moved it.

The cave dwelling at Laugarvatnshellar is situated halfway up a volcano in a very barren and windswept landscape that required us to trundle along at walking pace along an un-metalled road to get there. Half of the cave had been fitted out with corrugated iron walls, a stove, and some simple furnishings into a basic but liveable space, the other half of the dwelling had been devoted to shielding sheep from the harsh climate. It was in the dark of the sheep half that the young man asked if we’d like to hear an elf story.

He told us about a young shepherd who had driven his sheep to a similar cave shelter one winter night and, as was his custom and being some distance from home, he had laid out his bed on the floor of the cave to spend the night in the warmth of his flock. Just as he was falling from consciousness he became aware of some whispering voices and the feeling that apart from the sheep, he wasn’t alone. His lantern was still lit so he swung it about the space, checking out the darker corners, and no one else could be seen.

The shepherd still had the feeling that he wasn’t alone though, but because he was so exhausted and miles from anywhere he decided to snuff out his light and go to sleep anyway. A little while after his head hit the pillow he was woken by the sensation of two strong hands grabbing his ankles and pulling him out of the cave. Understandably disturbed by this turn of events he shouted after whoever had grabbed him and checked his cave of sheep. Apart from the sheep there was no one there. He stayed up a while longer and when he couldn’t stop his eyelids from drooping any more, he lay back down to sleep again but this time with more trepidation and the lantern still lit.

Again, just after he’d dropped off, two hands grabbed his ankles and, dragging him across the ground, they pulled him from the cave.

This being too much, and thinking it must be the elves, the young shepherd fled down the mountain in the dark and ran the handful of miles to the nearest farmhouse where he woke the family and recounted his story. With it being so late they gave him a warm drink and a bed for the night promising to help him check on the cave in the morning.

Morning eventually rolled into view, and after a good night’s sleep the curtains were pulled back onto a landscape of deep silent snow. Snow that had drifted into thicknesses of several feet in places and had completely covered the mouth of the cave and its inhabitants.

The sheep huddled together in their woolly coats were fine but the shepherd’s life had undoubtedly been saved, and not only that, he had been saved by the elves.

As you might imagine, Scandinavia has some of the highest rates of MS in the world. I’ve even seen conversations online about a genetic disposition towards having MS referred to as a ‘Viking gene’.

Those of us with MS are well aware that populations living at higher latitudes have a higher incidence per capita of multiple sclerosis. MS is virtually unheard of on the Indian sub-continent and South East Asia. From personal experience at a clinic in the Northern Territories of Australia, it’s virtually unheard of in the outback as well. In Europe, northern Europe has a higher incidence than countries on the Mediterranean, and it even goes so far as the islands in the far north of Scotland – Shetland and Orkney – having more MSers than the mainland per head of population; Aberdeen more than Edinburgh; Yorkshire more than Hampshire and so on. The scientists understandably draw links between MS and Vitamin D but also state that it isn’t the only cause – it’s way more complicated than that or we’d be curing ourselves with vitamin tablets.

It’s not just MS either. While looking up information on Restless Leg Syndrome (RLS) and Periodic Limb Movement Disorder (PLMD) – the latter being something I have to deal with – there’s a Scandinavian link there as well. I even saw a video where a sufferer says “no wonder the Vikings hopped into their boats and rowed across the North Sea if they all had restless legs”. RLS, and PLMD aren’t symptoms of MS but there does seem to be a close link between all these neurological conditions.

Of course, the Vikings travelled far and wide spreading their genes and establishing trade routes across Europe, the Middle East and North America. They’re not always the pillaging mob of horny helmeted madmen running ashore with swords and axes waving that they’re made out to be. There is an element of that for sure, but they were also quite a sophisticated bunch of explorers, establishing, among other things, a slave market in Dublin. Interesting when you consider the cultural similarities and the stories that the Irish and the Icelanders both grew up with.

I had a bit of a neurological ‘episode’ the other week. I had what I can only describe as a tightening build-up of MS fatigue knotting itself into a ball in my head. It was the worst case of fatigue I’ve had in years and I needed to go straight to bed.

Sensing that I could be in for a night of it and not wanting to face the stairs or disturb my wife, I pulled out the sofa bed. I collapsed onto it in the partial darkness and I must have been asleep before my head hit the pillow. After what seemed like half the night I was aware that there were people outside the door of the room. I could hear voices including my eldest daughter’s, and then someone rang a buzzer – I must have been drawing on my past experiences working for a council in the East End of London as it was the sort of low metallic sounding buzzer you get when someone buzzes you in to a block of council flats.

As I was awake and aware of my surroundings, I shouted to my daughter to find out who it was, only no noise came out, just a faint moaning sound.

I knew I was on the sofa bed but I couldn’t move – I was completely paralysed. I could see my surroundings because I managed to half-open one eye. My shouts for help came out as an almost inaudible moan and then I realised from recent experience that I was in a state of sleep paralysis.

This has happened to me on a few occasions in the last year and it doesn’t get any less terrifying. I was lying on my front so I tried to get up and I told my arms to push me up; they didn’t but it felt as if they had, and I felt like I was floating. My daughters then came downstairs for real and a mental switch was flicked and I was back in the room. I sat up in bed, a little bewildered, buzzing and tingling from the top of my head to the tips of my toes like a lightning rod in a storm. I then went to investigate why my girls were both up in the middle of the night on a school night.

It turned out that they weren’t. They were just getting ready for bed. It was ten past ten.

I’d been asleep for a grand total of ten minutes.

Also, that ball of fatigue in my head had somehow un-knotted itself and, although tired, I slept fitfully for the rest of the night.

I did a bit of ‘research’ on sleep paralysis (I looked it up on Wikipedia) and I ticked a lot of the boxes – voices, a presence in the room or nearby, inability to speak or move at all, a tingling sensation, and most weird of all – the sound of a buzzer. But what struck me the most was the sensation of floating, in my case like an out of body experience or, if I was a redneck in the American Mid-West, an alien abduction. Interestingly, this floating experience sometimes manifests itself as like being dragged across the ground.

Further reading suggests a link between sleep paralysis and narcolepsy, which makes sense to me considering I fell asleep within seconds, experienced REM sleep, and woke up all within the space of 10 minutes. Most people spend 10 minutes or so falling to sleep in the first place.

I think there’s no general consensus of opinion on whether sleep paralysis or narcolepsy is more common in MSers, in the same way that the Viking gene has been generally discredited over recent years. All I know is, when I think back to the Icelandic shepherd and his elf guardian, I know that story is definitely for real.

Cragside

Every now and then

She checks in on me

I know when she’s there

Because I close my eyes and I feel it.

The other day

I found a spot

A spot by a small fountain

A small fountain in a herb patch

A herb patch in a formal garden

At Cragside

I was tired from walking

Like someone twenty years my senior

So I sat on a bench

And my teenage daughters sat on benches too

And stared at their phones

Just the sound of the fountain

Trickling

Maybe a bee

But I don’t remember that

Maybe a passing aeroplane at 30,000 feet

But I don’t remember that

I closed my eyes

Just me

And the fountain

And my daughters silently scrolling their screens

She was there

Sitting beside me

And when I knew, the sun came from behind a cloud

The late August sun

And I felt the warmth

And the love

Just me

And my mum

And my girls

#Cycle100forMS

So I’m raising money for the MS Society and I’m doing it by cycling 100 miles. The challenge finishes at the end of this month (August 2020), by which time I hope to have raised a nice sum of money and will have become a little fitter by doing so.

“But Dave…” I hear you say, “you can’t ride a bike for toffee. You have no balance, and isn’t 100 miles pretty far to ride, particularly when you have MS and it’s the middle of summer? You’ll burn out!”

Well, thank you for pointing this out. I’ve actually adapted the challenge to fit my abilities, so instead of a regular bike, my wife found a second hand spinning bike from a local gym (it was the wrong colour, apparently), and I’m breaking up the challenge by cycling part of the distance every night. I’ve wanted some form of exercise bike for a while and I’m not a gym person by any stretch of the imagination, so having one in the garage is ideal for me and I’m down there most nights.

“But how can you travel 100 miles?”

Well I ‘cycle’ for half an hour a day in the late evening when it’s nice and cool and then I add up the daily distances that the bike clocks up on its odometer, and so long as I hit the target by the end of this month I’ve achieved my goal. As it turns out I hit the 100 miles at the end of last month, so I’m already there.

“Isn’t that a bit like cheating? Surely you should travel 100 miles in one go.”

Well I’m not a professional cyclist, or athlete. It’s more of a challenge for me to go out and cycle for half an hour every night on a bike that I set some resistance on, than it would be for Lance Armstrong, say, to go out and cycle 100 miles in one go.

“So how much money do you hope to raise?”

Well, that’s another target well and truly smashed. When I started out I thought a couple of hundred quid would be a good amount, but I’ve raised nearly £1,100 now.

“That’s brilliant! So what do you get out of the fundraising personally, and do you have any tips for anyone hoping to do the same?”

I made sure I targeted social media in such a way as to capture the broadest sweep of family and friends – Instagram, Facebook and Twitter. Facebook was the most responsive, even though I’m not on it much. My wife and one or two friends shared my updates and she has loads of family and friends and so forth, so it was nice to connect with people that way. I’d say posting updates when people are winding down on a Friday afternoon is the ideal time, particularly during the coronavirus situation when everyone’s staying at home more.

Apart from that, I sent an email around at work, and I picked up a few extra quid from casually dropping the subject into conversations. I’d say posting updates was key so people who have already donated feel like their investment has paid off, and also so that people who have made a mental note to sponsor me at some point are given a gentle nudge.

So far, about 60 people have sponsored me and it’s genuinely heart-warming when you find out another donation has dropped. You also find out that more people than you realise have some sort of connection with MS. If they don’t have it themselves, then someone close to them will, so it’s been a way for people to make a concession to the struggles their friends and loved-ones go through.

I’d say, if you’re thinking of doing some charity fundraising – do it. Make sure you have a real connection to the charity and each and every donation, no matter the amount, will give you a warm glow.

“I know you, Dave, and I bet you listen to Kraftwerk while you cycle. Tour de France, yeah?”

At least three people have made this point, so this is a genuine ‘frequently asked question’. The answer to that is I tried it once for a giggle but I didn’t flow with the tempo of ‘Tour de France Soundtracks’ – the album was a bit slow for me.

I started my challenge listening to podcasts but this made the cycling drag a bit, so I now listen to music. The ideal album for me to cycle to is Pink Flag by Wire as I know it like the back of my hand (it’s a favourite) and the tracks are short and fast and the whole thing just about fills my 30 minutes. The time flies!

“Great! So how do I donate?”

Well, thanks for asking. It’s really easy as I’ve set up a JustGiving page so you can read more about why I’m fundraising for the MS Society in particular, with some examples of how the money might be used, and you can make a donation by card or by PayPal. The cash goes straight to the MS Society and you can even donate anonymously if you want to. Just remember to do so by the end of August 2020 and thank you, it really means a lot to me. I’m doing victory laps now.

Time for a re-purposing

OK, so I have MS…

…and I enjoy writing – it’s my primary creative outlet…

…but I don’t always want to write about MS.

I am someone who has MS in their life but I know I shouldn’t let it define me. I have MS, but I also have two pet guinea pigs  – this doesn’t make me want to write about guinea pigs all the time, even if they are pretty cool.

So from here on in I’m going to start writing about other things as well. I occasionally write poetry; I have a long list of (true) spooky stories; I occasionally travel to some interesting places, and guess what? I have interests and opinions on things outside the world of chronic brain disease.

First things first – I’m changing the strapline (the title can stay) and mooching through the wordpress templates.

It’s time for a re-brand and a relaunch and I’ll aim for a post a month.

Sticking at it

I plucked up the courage to go down to my allotment the other day.

The first proper visit of the year is always a bit daunting. I can see the allotment as it’s just behind where I live, so I know that my plot has spent a number of days recently under a foot or so of water. It’s also on very heavy clay-based soil so I know from experience that it’s going to be very hard work digging it all over.

There’s also that hurdle of making passing conversation with the stuck-in-their-ways, Daily-Mail-reading, brexit-voting old men down there, most of whom are at least 20 years my senior (and I’m in my late 40s).

But I was in the mood for some fresh air and I thought I’d better check things over.

The first conversation went something like this, with someone I’ll call ‘Dick’ as he was leaving.

“Ay up Dave, You alright?”

“Not bad Dick, you OK?”

“Aye, not bad. You look a lot better than you did the other day though.”

“Why’s that then?”

“You were just leaving the GP surgery. You looked awful – you were walking with a stick!”

I’d been to pick up a repeat prescription for my restless legs (Rotigotine – been working wonders), and yes – I had walked there and back with a stick, so I guess I must have looked truly terrible… like Frankenstein’s monster or a daylight Nosferatu, no doubt.

Dick’s rather insensitive comment ranks alongside a former manager’s ‘little buggy’ comment and places them firmly on a hit list of people to target on the day I finally crack.

At least he doesn’t know I also piss through a straw, I guess.

I’ve been walking with a stick for a few weeks now, mainly at night after the rest of the family are in bed, just to help get my step-count up and I’ve only been using it for distances of about half a mile or more. The truth is, I need to exercise and I find it impossible to run these days, to the extent that I genuinely worry about traffic and the amount of time I have to cross a road.

I stay seated for a good deal of the day because I work in an office. Also, it’s hard to maintain an active lifestyle when your legs let you down after a couple of miles, so walking with a stick has become a necessity.

And I’m glad of it. Just this last week (apart from one bad day) I hit an average of 10,000 steps a day and the stick has certainly helped me get there.

I see it as the equivalent of holding onto the handrail while walking along the deck of a moving ship. It just provides that little bit of extra balance and reassurance and, perhaps more importantly, tells me I have no excuse not to go out for a walk round the block.

It also sends out a message: ‘I’m not quite as mobile as you, so please make allowances.’

It also says: ‘I’m disabled, so I’m unlikely to be an attacker or an assassin, but if you fancy your chances, I can wield this sturdy weapon, ninja-like to defend myself.’

So it’s very much a psychological support as well as a physical one.

I’ve also been seeing a neurophysiotherapist again (more of that later) and she thinks I’m doing the right thing by setting and hitting step-targets and recognises the stick as an essential tool to achieve them. I’m quite a brisk walker (for the first mile and a half, anyway) so it’s nice to get some fresh air and exercise every day before I hit the sack.

Of course, the combination of fresh air and exercise late in the evening also ensures that I’m pretty much comatose by the time my head hits the pillow – an added bonus for someone who has struggled with insomnia for a lot of their adult life.

So I checked out my allotment plot, retrieved my plastic chairs that had blown off in a winter gale, swept out my greenhouse, emptied some scraps into the compost and checked that my shed hadn’t been flooded (it hadn’t). And all of a sudden, things looked rosier and more managable. Yes, I’ll have to dig it all over, but I’ll take a day off with a flask of hot coffee and my headphones in and I’ll make a start.

I also had a good long chat with the bloke on the next plot to mine who I’m friendly with. He’d fixed my strimmer for me over winter, and I just felt generally more positive by the end of it. He told me that Dick – the gossip – had mentioned the stick, so I explained the situation and he seemed to understand.

I no longer care about how I look, but one reason I had rolled out the stick’s use after dark was that I was a bit self-conscious to start with, like I might be if I’d started wearing glasses perhaps. With the stick helping me build up some stamina and the physio working on my balance and core-strength, my main thoughts for this season are now about what I’m going to grow, rather than what I can manage to do.

Blitzkrieg post-script

Well, everything was a bit miserable at the end of my last post so apologies for that.

I’m a week or two further along the line now and I’ve been applying the patches to their designated places in the literature and experimenting with each zone.

I’ve found that the only place that works is my upper arms. I just have to find out how I can rotate the patches so I’m not sticking them in the same place every 14 days (space is limited), as all the literature says “do not stick the patch in the same place in a 14 day period,” without explaining why – will my arm fall off?

Anyway, it’s 7 days of patches just above the left elbow, followed by 7 days above the right. After that it’ll be 7 days just below each shoulder (on the non-hairy bits).

Sleep is blissful again, but I’ve found that I’m very weak in the legs when I wake up, and fairly weak during the day so I’m thinking about referring myself to the physio again.

Blitzkrieg

One of the things my brand new neurologist did for me when I met him earlier this year is confirm my diagnosis of restless legs syndrome (RLS). It’s something that I’ve been wondering about, on and off, pretty much since diagnosis, so it’s ‘nice’ to have it confirmed.

It’s not a symptom of MS, but there’s a higher incidence among MS patients than the general population.

In fact, what I assumed was leg cramps associated with the MS is actually RLS.

Where it has been an inconvenience before, it has suddenly decided to ramp things up a notch or two. Instead of an uncomfortable build-up of tension in a calf muscle followed by my leg clenching (bad enough), the build-up is leading to a muscle explosion. Don’t forget that, along with most others with the condition, this happens in the early hours of the morning.

It really impacts on my quality of life, and on Mrs Dave’s too when I wake her up with it.

Over the years, I’ve tried different meds (Gabapentin, Amitriptyline, Baclofen) to smooth it out but been flattened by the side effects instead. I ended up ditching Baclofen last year after increasing the dosage to a level that I really wasn’t comfortable with before the initially calmed legs started playing up again.

The last ditch attempt to do something about it came in the last week or so when I tried rotigotine patches that the neuro had suggested. At a higher dose they’re normally prescribed for Parkinsons patients, so they’re a pretty serious drug.

My word they worked!…

…they worked for three whole days. For three days I was restless leg free.

Bliss!

I mean, I woke up in the morning feeling nauseous and headachey as side-effects of the rotigotine, but that’s still heavenly compared to the daily blitzkrieg of RLS.

I could still feel that something wasn’t quite right; there was still a little bit of tension build-up, but not enough to cause distress or explode in a massive leg spasm, more like a stiff leg. But then, after sitting down yesterday evening to watch TV, it returned – bang! – out of the blue.

I wondered if it was a one-off and made sure to do some stretches before bed, but it came back with a vengeance at 2am.

It feels a little bit like I’ve kidnapped my neighbour’s barking dog and dumped it on the far side of town – just far enough to hear it at night in the distance – and now it’s found its way back home.

So I’m feeling quite glum.

My glumness has been compounded by restless leg message boards which state that it’s a common occurrence with this disease. It gets blasted with medication and then decides to go “f**k you! – I’ll show you what happens when you try to fight me” and then untangles its way out of the medicinal straightjacket you tried to put it in.

Restless legs can be so distracting that I’ve even had fantasies of blowing my head off with a shotgun when it flares up at the end of the day when I feel fatigued. Thank crikey for British gun laws as these aren’t light-hearted fantasies in any shape or form at all. The rotigotine prescription is pretty much the final straw medicine-wise, as far as I can see.

So what can I do?

Before the patches, I’d called in on Holland & Barrett, after a discussion with the MS nurse, to see if CBD oil supplements and magnesium tablets might help (as suggested by some on MS message boards). They didn’t, but the CBD oil has helped a lot with balance and leg strength, to the extent that I really notice if I forget to take it.

So I’ve been down to Holland & Barrett again and I’ve stocked up on Vitamin D, because it’s MS innit? And we all know of the potential link between MS and vitamin D, don’t we? I’ve also bought some B12 tablets, primarily because I haven’t eaten red meat for 30 years and I think I probably need to supplement my diet with this, anyway.

I’m not giving up on the rotigotine yet. I’m going to see out the course of this set of patches before making my mind up, but as I’ve been typing this my right calf muscle hasbeen jumping.

Mourning sickness

I recently heard that it’s a good idea to find something to mourn with MS. Something in life that MS has taken from you.

Maybe it’s a good night’s sleep, or the ability to run a long distance or that you’re no longer the party animal you once were. It could be all sorts of things…

Well, I realise this is going to sound bizarre, but I miss being sick.

What I mean by this, of course, is being sick in a conventional sense.

The sort where you spend all day under the covers and concentrate on not moving; where you can settle back into a snuggly bed after a mammoth hurling session* and feel momentarily better in a fuzzy, numb, dozy kind of way.

The sort where life is taken out of your hands for a bit: no work, no kids, no school run, no washing up, no trips to the supermarket, no responsibility at all except to get better. In fact, maybe your other half will pop in any minute now to tenderly mop your brow, plump up the pillows and ask if you need anything.

The other day, I had a smile listening to one of the younger members of staff in our office fretting about job references and the fact they’d had 11 days off sick over the previous 12 months.

Ahh! I suddenly came over all nostalgic for my 20s and how I used to sometimes ring in to work sick on a whim.

While some of these were sick days precipitated by a sudden and debilitating lack of strength involved in the lifting of a warm duvet, and some were the sick days that were self-inflicted by the social event from the night before, there were some actual genuine cases. One food poisoning incident sticks in the mind, particularly.

OK – I’m not seriously feeling nostalgic for food poisoning, but going back further to my school years for instance, I remember slow days of no energy and a gradual build up of nausea with some fondness. Feeling better again and rediscovering food has to be one of the best things in life. Opening a full fridge as a teenage boy on a mission to repopulate an empty stomach is like being handed a golden key to a mystical land of endless opportunity …and last night’s leftover pizza.

Gloriously, there was a day in my teens when I was horrified to find a face full of what I assumed was acne, only to be told by my mum that it looked very much like german measles, that I had a fever and there was no way – NO WAY – I was going to school that week.

I remember nodding sagely, “OK Mum, I’ll just head back to bed,” but with the internal me punching the air, shouting “YESSS!!!”

While I’m a big believer in taking sick days if you genuinely need them (and I know several people who will bravely soldier their way in to work to selflessly redistribute their germs), I haven’t had one for a couple of years. Not bad for someone with MS, eh?

I put my fortitude down to the fact that I’m more in tune with my body than I have ever been before. I am painfully aware that I’m no longer the invincible teen or twenty-something I once was. I am also hugely grateful for working for the sort of employer that lets you work from home if you’re feeling a little bit dodgy, or fatigued, or could do with stretching out in your joggers rather than getting into your work clobber and driving (in my case) the 10 miles to the office.

I also need to keep my sick leave in reserve so that I take it when I genuinely need it and not make a name for myself as someone with the sickness record of a 25 year old.

The drawback to this, of course, is that you might feel obliged to work even if you’re really not up to it. If you’re the cynical sort, it can seem a sneaky way for an employer to get you to work when you should really be taking it easy.

The last time I was off for any appreciable length of time for something non-MS related was when I had taken about 2 and a half hours to drive home in blizzard conditions. A journey that normally takes 15 to 20 minutes. I had successfully and narrowly avoided a collision on a steep downhill; I had dug the front wheels out of the snow when I came to an unavoidable standstill, and after some loud encouragement from a passing RAC driver, crawled (or rather, slid) the last stretch home only for me to suddenly develop something deeply unpleasant and gastric about 5 minutes after entering the front door.

Politely declining my snow-day elated daughters’ offers of a snowball fight, I rapidly ascended the staircase to spend the next couple of days yo-yoing between bed and bathroom. It was either all triggered by the stress of the journey home or my body putting it all on hold until I was somewhere safe.

Of course, when you’re that sick and you also have MS, yo-yoing to the bathroom sounds like an ideal you can’t achieve. It’s more a case of being as still as you possibly can because if you twitch a muscle, vertigo might kick in, and if vertigo kicks in, you have approximately 10 seconds to reach the place you need to get to, to do what you need to do. In those 10 seconds, your legs might turn jelly-like and behave like those of the newborn Bambi on ice as well. There’s no instant relief either – it’s all about trying to ignore the MS symptoms that will have crashed back in.

So I’m mourning being sick in a conventional way… or maybe I’m craving last night’s pizza.

If you have MS (or any other chronic illness or disability) let me know what things you are mourning in the comments .

————————————————————-
* not a session hurling mammoths.

Baclofen fun

Well it’s the new year (happy new year!) and after over-indulging over the festive period, my thoughts have naturally turned to new year’s resolutions. Normally it’s something to do with losing a bit of weight and becoming fitter, even if it’s just a little bit fitter and being able to take my belt in a notch, or maybe even two notches if I’m lucky.

I’m not talking about joining a gym or going on a crash diet, because that’s just not me. It’s not something I can sustain or commit to. I know I can shed the pounds I need with a few sensible lifestyle changes. I’ve done it before, and that’s what I intend to do.

Also, the trouble is, I’ve come to the realisation that if I need to get fitter I need to build up some strength in my wobbly legs first.

There’s a brand new branch of the co-op just over half a mile from where I live. This has provided a good excuse to nip out for any supplies we might need. The co-op is about as far away as other local shops, but the walk involves a traverse of a local park so it’s much more pleasant and enticing than nipping to the local Spar or the Morrisons supermarket. If we run out of milk, or if I need some green pesto (co-op do a very good pesto), I treat it as an excuse to get some fresh air and a change of scene.

By the time I get home, though, I find it becomes a real effort to coordinate putting one foot in front of the other, my legs will be in the process of turning to jelly and I’ll clumsily fumble with my shoelaces like a crap Houdini once I’m through the door.

The truth is that I can barely walk a mile these days without the need of a ‘good sit down’ straight afterwards. This is a far cry from the five miles I used to run around the neighborhood until relatively recently, or the eight miles I used to walk every day while working in the east end of London some 15 years ago. When that mile is up, I’m already off balance; I feel like I’m leaning forward, waiting to collapse into the friendly welcoming arms of my sofa.

And it’s not just walking: I went to see one of my favourite bands – Mudhoney – in Leeds towards the end of last year and spent most of the gig worrying about my ability to stand up for long periods, only for someone else’s legs to give out in front of me.

So what’s the big difference between then and now?

Like any human being looking to lay the blame fairly and squarely at someone else’s doorstep, I’ve laid the blame at the doorstep of Baclofen.

Baclofen is a muscle relaxant that I take a couple of hours before bedtime to alleviate nighttime leg spasms. These spasms can literally kick me awake in the middle of the night and then repeat on a cycle every 20 to 30 seconds over a period of an hour or two. On the rare occasion they don’t kick me awake straight away, they’ll kick my wife awake who then obliges by throttling me into the world of consciousness.

Initially my dosage was a single 10mg tablet, but this stopped working as well as it had in the past and I upped the dose to 20mg towards the end of last summer. Over the last month or so I’ve noticed that the 20mg dose had stopped working as effectively, and now, when I wake up in the middle of the night for whatever reason (and I wake up every night), I know I’ll get a spasm by the time I count to 20.

I rang the MS nurses for advice. Should I seek an alternative drug? One that will not only prevent the spasms but also not cause the muscle weakness during the day?

Well, the short answer to that question is ‘no’. I seem to be prone to side effects, and they all have their side effects.

Twenty milligrams is also still quite a low dose and I can apparently increase this to 80mg if I need to. The leg spasms could also be kicked off by factors other than the medication losing its efficacy, or disease progression (my other worry).

Questions that the MS nurse batted my way included whether I’d had any infections… None that I knew of, although, being a catheter user, I could have had a mild infection without being aware of it. Also, I’d come down with a heavy cold in the previous 48 hours.

Also, have I had any major stresses? As I can confirm from my relapse history, stress can apparently influence MS as strongly as any infection.

Apart from my dad dying a month ago, his funeral occuring a couple of days previously and Christmas in the intervening period, I had no stresses that I could recall at all. Maybe the normal day to day stresses of being a parent to one teenager and one nearly-teenager, and being married to someone who takes a not unreasonable dislike to being kicked awake at 2am, but hey!… apart from all that, life is generally sweet.

The upshot is, I’m increasing my dose to 25mg until life gets a bit more tranquil. I’m starting to introduce more gentle exercise in my daily routine and I’m keeping a close eye on any changes for better or worse. Hopefully, when things are a little more settled, I can reduce the dose down again.

It’s about quality of life

As hinted at in my previous post, after a couple of nasty infections, my dad’s in his final days.

At the time of writing he’s being made comfortable. He’s not in any pain and he doesn’t really have the strength or inclination to eat or drink, other than a couple of spoons of mashed up weetabix he had yesterday and enough water to keep his mouth and throat from drying up. He barely has the strength to lift his head or even open his eyes.

This doesn’t mean he’s asleep though. I was talking to a doctor by the foot of his hospital bed earlier in the week and I’d mentioned my MS in passing. The doctor had started telling me about a disease modifying drug he’d read about in the BMJ: “Ock… Ockra…”

“Ocrelizumab?” I ventured.

He looked surprised, “Yeah – that’s it.”

Having MS sure makes you do your homework.

For some reason, my dad chose this moment to lift his head and eye us suspiciously; he lifted his right hand like an imaginary gun and shot me twice before nodding back off.

Good old Dad, he’s had a long life, he has never done any harm to anyone  and he still has a sense of humour.

Now, I’ll lay my cards on the table: I’m an atheist. Plenty of people have tried to convince me otherwise: evangelists, jehovah’s witnesses, you name it, but it’s like water off a duck’s back to me now. I’ve considered the evidence and I’d say I was solid in my (non-) belief. It’s not like I can say I wasn’t taken to church as a kid or anything. I’ve done it all. I’m even a Sunday school drop-out.

It comes from having a vicar as a dad.

I lived in vicarages for the duration of my childhood until I was within grasping distance of my teenage years, and then we moved into my gran’s old house and that’s where we settled.

Dad gained a job as the first full-time chaplain in the newly built local hospital, building the role up from scratch.

I don’t meet that many people who remember him in this role as it was a long time ago. The ones that I do, however, always take pains to tell me what a lovely man he was and how he had time for absolutely everyone.

He really found his vocation in life, and made it his mission to keep his finger on the pulse of all the staff as well as the patients.

Whether it was meeting or sharing jokes with the cleaners (or the ‘pink panthers’ as he called them, due to their pink uniforms), the consultants, or the mortician (who memorably tried to get the measure of my dad by inviting him to a post-mortem, expressing surprise that he hadn’t fainted during the experience), he listened to them all, and he let them all unburden their stresses, complaints, fears and sorrows onto his shoulders.

He respected no social hierarchy. We were all human. We were all made equal. We were all loved.

I remember him telling me that he’d been to see a patient who’d listed wicca as their religion. I’d expressed surprise that he’d been to see someone who wasn’t a christian. He put me right – it didn’t matter what your religion or lack of religion was, we all need someone to listen to us and that was why he was there.

When I was diagnosed with MS, I had, and still largely do have, a light-hearted attitude towards the disease and everything it throws at me. I guess it’s my way of dealing with it. No matter how breezily I’d mention anything to do with it to Dad, he’d always take me off-guard by stopping whatever he was doing, removing  his glasses and giving me his full attention.

He was retired medically in the early ’90s. A dodgy ticker wasn’t being helped by the stress of his job. He’d had pressure from management at the tail-end of the Thatcher years. He said they sat in offices away from the rest of the hospital and their main concern seemed to be balancing budgets above all else. He felt that his was a role that had no empirical value in their eyes, though I’m pretty sure one or two of the senior management team sought him out when they eventually needed him.

I also remember that he’d found it especially hard dealing with stillbirths and bereaved parents at a time when he’d become a grandfather for the first time.

Years of happy retirement followed in which he became a devoted grandfather to 6 and, in the last year (to his enormous glee), a great-grandfather. When my mum (who was born into a typical methodist mining family) died 12 years ago, on her encouragement, he ‘crossed the Tiber,’ and joined his friends in the Roman Catholic church. This was a move that eventually and inevitably led to him achieving ordination as a catholic priest, teaming up with an old hospital colleague at a church in a working class suburb of town. He retired for a second time only a handful of years ago.

Despite being a non-believer, my upbringing means I’ve always found it very familiar and easy to talk to clergy. Thinking about his last rites, I’d mentioned to my dad that I was going to talk to a priest, and in a feeble whisper he told me it wasn’t necessary. His short term memory had already been blown to pieces by his recent illness, so I assumed it was similar to him telling me about self administering his own communion after his second retirement, but no – the priesthood had been there already.

“He’s all signed off, the Monsignor came to see him… let me see… ten days ago,” the local Dean informed me at the end of the phone, and then in a beautiful turn-of-phrase that made me choke back the tears, “he’s had his passport stamped, and he’s ready to fly.”

It must be a phrase that my dad is familiar with because when I told him I’d heard his passport was stamped, he managed a smile. Then following the Dean’s advice to give reassurance that it was OK to go, and for him not to worry about who or what he might be leaving behind, I added “when they call your flight number, just go for it Dad, just pick up your bags and go straight to the gate, OK?”

“OK” came the whispered reply.

He’s back in his care home now. The hospital where he’d worked has done everything they can for him, and he’s now being treated by nursing staff who visit daily and the lovely living saint who is his main carer. It’s a surrounding that he’s familiar with, that doesn’t involve beeping equipment, the groans of other patients, the pink panthers with their mops and brushes, or having his blood pressure checked at regular intervals. He can be lulled to sleep again by the night trains on the nearby railway, rattling past to destinations unknown.

The future and the wellbeing of the planet has always seemed to me to be on a knife edge with global warming, the ongoing mass extinction event that is the human race, and now the era of Brexit, Trump and the rise of populism across Europe. Dad’s left such a legacy to be proud of, he has touched so many people’s lives, and we need more people like him. More people to redress the balance of an off-kilter world. More people to heal the human spirit.

It’s about quality of life after all.

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Yes – I was a porker of a baby and I remember that monkey