Accepting the stick man

As I mentioned in my last post, I have recently started Ocrelizumab infusions. After a year of lockdown, this has involved a couple of trips to the city for long days in hospital hooked to a drip and, face-to-face interaction with other living and breathing human beings outside of the family bubble.

I have noticed on these trips that the more powerful disease modifying therapies, such as Ocrelizumab and Alemtuzumab, seem to be offered to MSers as a first line of defence instead of the relatively ineffective ones – the beta interferons and copaxones (the ones I’ve been ticking over on for all these years). I‘m a little bit rueful that it took a relapse to rob me of some mobility and balance, before the possibility of changing medication presented itself. It’s no-one’s fault though, it’s just the changing medication landscape and the fact that the old meds did a pretty good job at keeping relapses and disability at bay for over a decade. I’ve just swapped my hand grenades for napalm, that’s all.

The consequence of this is that when I arrived at the front door of the neuro- ward, those waiting for their infusions seemed to be newly diagnosed youngsters – a term that, in my fiftieth year, I now bestow on anyone in their thirties. One of those waiting 30-somethings had instantly clocked my stick and sprang forward in his chair to offer it to me.

I was taken aback by this as this is the first time anyone has ever done this for me, and I tend to forget about the stick and what it might represent after a while. As a walking tripod I’m an expert wall-leaner, so I was more than happy to do some leaning and I politely declined the offer, but a door had opened; the gesture was a friendly supportive one, and it broke the ice nicely to talk about why we were both there. We made a connection.

I see the stick as an overwhelmingly positive thing anyway – a force for good – and when it comes to other MSers it’s a great way of connecting and breaking down barriers. When I decided to take the plunge and buy it, just over a year ago, I had been initially reluctant to be seen out and about with it, but it soon becomes second nature – almost an extension of yourself – and I even use it for walking to the end of the garden and back without a second thought. It’s not as cute and full of personality and intelligence as an assistance dog, perhaps, but it’s still an invaluable tool in my arsenal. I am mobility-enabled now and a whole new landscape to trample across has opened up in front of me.

The stick represents so much. An able-bodied person might assume a negative viewpoint, whether they mean to or not, seeing me as a victim (and I’ve had one or two tactless comments from people I know), whereas a newly diagnosed MSer might visualise themselves crossing this particular bridge at some point in the future.

I used to share a house with a philosophy graduate who once postulated there was no such thing as altruism – everyone has an agenda behind their actions whether they realise it or not, so I’m just going to project a bit and hazard a guess at his subconscious motives. I wonder if this offer of a seat to a bloke with a stick was to appease the mobility gods or maybe he was cementing his perceptions (in his newly-diagnosed way) of being part of the ‘MS family’. He may also have been understandably nervous about attending hospital for what is essentially a big deal and needed the connection for reassurance. If I’d wanted the sit-down, I would have accepted his offer, but I think it was good that I refused.

It was good because it conveyed the message, ‘even though I have a stick, I’m still OK. I’ve had all kinds of crap to deal with and I can still manage. I’m still strong. I’m still a cool dude in my WFMU T-shirt. I rock the stick. I’m still me. Watch how well I can lean on this wall.’ But more importantly, it also says: ‘You could be me. You will also be OK. You will manage too’.

As well as completing my first infusion, being offered a seat is also a major milestone on my MS journey – wow, two milestones in one day! I hate accepting assistance from anyone, even if it’s for something I wouldn’t be able to do in a month of Sundays, like I did when a couple of guys I knew shifted a washing machine for me recently. To do so reminds me of what I should have been able to achieve had I not been dealt the blow of this disease. Maybe I also beat myself up a bit for not being paralympian in my efforts to look after myself. It has to be a concept that I’m going to have to make peace with if I’m to do myself any favours growing into my fifties and beyond.

My mum always brought me up to offer my seat on the bus to anyone who needed it more than me. I thought I’d feel like an old man myself if I were ever to be offered a seat, particularly with a landmark birthday looming. In the end I actually felt a lot of acceptance: that of being accepted by other MSers on a level playing field – always a good thing; of me accepting the stick as an extension of myself with its positive vibes and its marvellous powers, but also, most importantly, me coming to terms with being offered and accepting help from others.

Ocrevus checklist

I’ve just had part 1 of my initial Ocrevus infusion. Beforehand, I asked the MS community on Twitter for their top tips for infusion day and I thought I’d combine them with my observations so that I can share them here.

This may be useful for new Ocrevus patients, and I’ll also refer to them myself as a checklist every six months on top-up as, knowing me, I’ll only forget otherwise.

Packing a bag

What to include:

  • Your appointment letter on the off chance that the hospital staff stare blankly at you and claim they’ve never heard of you.
  • A facemask and hand sanitiser. You’re clinically vulnerable and actually need to isolate for two weeks after infusion day so don’t risk picking anything up from anyone else, and don’t pass anything on to the hospital staff either. You may not be able to attend without a mask in this age of covid, anyway.
  • Sweets and snacks to counteract the taste of the steroids they give you pre-infusion. I didn’t get a metallic taste on infusion #1 but I think it’s a good idea for keeping up blood sugar anyway.
  • A cold drink in a bottle to keep hydrated (counteracts headaches). Water is fine but squash is probably better for the same reasons as the sweets.
  • Something simple to keep you amused because it’s a long day. I packed a fully-charged tablet (mainly to save my phone battery for sending essential messages). Hospital guest wi-fi was easy to log into and didn’t require a password. It’ll also give you something to look at, so you don’t spend the day avoiding eye contact or pretending to sleep. Don’t pack a book – I packed a Haruki Murakami and found it frustrating and impossible to concentrate on after one page.
  • Headphones for the tablet. Maybe download a film, or maybe a playlist / podcasts from Spotify or similar.
  • A sandwich / lunch. The NHS is a marvellous organisation and I thank my lucky stars that I was born in the UK because of it, but their sandwiches are certainly something to write home about, and not in a good way, unfortunately.
  • Walking stick / mobility aid / catheters / other MS essentials
  • Your appointment letter might tell you to bring your old medication. Don’t bother. The nurses seemed a little frustrated that no one had bothered to delete that sentence from the letter.

The day itself

  • Take a day off work for the day after the infusion. Hopefully you won’t feel ill but you will feel tired and, let’s face it, how often since your mid-twenties have you taken a day off work just for yourself. You’re likely to be up late with nerves the day before and up late again on the day itself from the steroid rush.
  • Get all your blood tests done within two weeks of the infusion. If you don’t (I didn’t) they do them all over again on the day and you’ll be waiting for the results while everyone else is merrily having their infusions.
  • Have a friend or family member give you a lift to the hospital and arrange a pick-up point for afterwards. You’ll probably feel fine afterwards but it’s not guaranteed, and you’ll be in no mood for negotiating city traffic / car parks etc. The antihistamines they give you to counteract any potential reactions may make you a little drowsy as well.
  • Establish what time you’ll be finished and text that through to your chauffer as they may need to alter their schedule accordingly. If the nurse looks at your drip and says you’ll be finished at 3.30, you will be finished at 3.30, guaranteed. They’re the expert here.
  • Aim to arrive early, if only to bag the best seat by the window (see pictures) but also so you can provide a sample
  • Drink a load before you get to the hospital – apparently it makes the veins stand out better and gives your needle wielding nurse something to aim at.
  • Don’t go for a wee until you’re handed a pot for a sample. The sample is a necessary part of the day to eliminate infections and so forth, so if you turn up with an empty bladder you’ll just prolong things.
  • If they’re about to hook you up to the drip, go for another wee (easier if you catheterise, admittedly) as you’ll be stuck to your chair for a few hours. It’s also a good idea to stretch your legs, particularly if, like me, you’re prone to leg spasms. Remember, there’s no need to be embarrassed about your weak bladder – you’re in a room full of people with MS after all.
  • Accept all cups of tea / coffee that come your way. You need to stay hydrated. If you need a wee, they can always unhook you.
  • When the lunch trolley rolls around, you’ll probably refuse the sandwich in favour of the one you’ve made and brought with you. Do not UNDER ANY CIRCUMSTANCES refuse the cake * (unless you’re gluten intolerant / allergic). You’re having stuff pumped into your bloodstream to kill your B cells so screw the diet; no-one’s watching; you deserve the cake and it’s the only tasty thing they’ll bring you. Plus, what I said earlier about sugar levels etc.

After the infusion, they’ll hook you up to another bag full of saline, just to flush the last of the Ocrevus into your system. This doesn’t take long. When it’s all in, you’ll bleed back into the tube a little bit and the nurse will come and unhook you. You can now phone or text your lift to tell them you’re leaving on time and you can be on your merry way.

So those are my tips for dealing with the day. During the day, you will have your blood pressure monitored and your temperature taken on a regular basis, and the nurse will be in to see you often to press a button on the machine that feeds you the drip to stop it bleeping. This breaks things up a little bit so the day doesn’t actually pass as slowly as you think it might.

It’s quite straightforward really and afterwards you’ll have that glow from being a super-special member of the Ocrevus club for the next six months at least. Enjoy the ride!

* disclaimer: cake may not be available. In some hospitals it may take the form of biscuits. Don’t refuse them, in any case.

Gloves off

Well, I knew I’d be tempting fate to say that I was feeling fitter and more mobile. It seems that the old MonSter has found a chink in the armour and has left its footprint behind in the form of a few new spots on the MRI.

My neurologist has decided to advise exactly what I wanted him to do which is to nuke the f**ker.

Even though they’re four or five small lesions, he’s decided that because I reported an increase in disability (decreased mobility) at our online meeting last autumn, we should take no prisoners.

He basically handed me a menu and asked what I’d like to try.

So, after a weekend reading the excellent info on the MS Trust website, I ended up talking to one of my MS nurses, about my choice. After about 15 minutes of life-affirming chit chat about music, life, Gideon Coe’s radio show, vinyl collecting and so on, my wife decided it was time to roll her eyes and tap her watch and we addressed the matter at hand.

So, in summary, it’s ocrelizumab that I’m going to go with, aka Ocrevus.

I’m choosing it because it’s one of the most highly effective DMDs available to someone with relapsing remitting MS and although it has its side effects – I’ll be compromising my immune system somewhat – that list is relatively short compared to the other main candidate Alemtuzumab. It’s the usual trick of deciding what’s effective and balancing the advantages against the disadvantages and the likelihoods against the will-never-happens and ocrelizumab tends to float to the surface more often.

There are a few bits and bobs to go through first. My neurologist needs to apply for funding and I need to provide some blood so they can do the usual liver and white cell measurements plus a few new ones such as a thyroid test and then it’s just a matter of getting booked in for the infusions. I’ve had my Covid jabs as well, so that’s a major hurdle over with.

Initially it’s a case of having the meds dripped into my vein over the course of a day and then returning for another session a week later. After this I need topping up every six months or so. And that’s it! No setting reminders on my phone; no room taken up in the fridge by boxes of needles; no worrying about packing for holidays. I’ll just turn up at the hospital on time and have a sit down for a few hours twice a year while I get pumped full of B-cell killing nastiness and Bob’s your uncle. I can even legitimately take it easy for a couple of days afterwards as the initial side-effects apparently take a while to wear off.

So, the potential side effects for me range from the less serious infusion reactions (the team at the hospital can slow down or stop the infusion if they feel it necessary) to the more serious ones involved with what will, after all, be a weakened immune system. I’ll be more prone to infections, particularly of the respiratory tract, for instance, so I’ll have to watch out for any persistent coughs, breathing difficulties and so on.

There’s also a minutely small chance of getting Progressive Multifocal Leukoencephalopathy (PML), a rare brain infection that the MS Trust reassuringly tells me usually leads to death or severe disability. I’ll know what to look out for though. I’ll be looking out for brain-related wrongness, or in other words, symptoms that sound like MS. Nice and easy.

So, there we have it. It’s been a while since I last had my defences breached so I feel reassured that we’re responding quite aggressively, and I also feel reassured that we’re not looking at Secondary Progressive MS which is what I had feared. To find out that there’s new activity on your scan, despite your best efforts at keeping the MonSter at bay, can be so deflating, but a plan of action does give a real confidence boost… Bring it on!

Moderate, becoming good later

“OH!… MY!… GAWWD!… Whadda ya DO?”

This question was once catapulted at me from a woman working behind the counter of the MOMA gift shop in New York.

Standing at the front of the line with my Gerhard Richter postcards, I must have looked more than a little bit flummoxed and in need of some clarification…

“How’d’ya getcha voice so DEEP?! Do you do exercises or sumthin’?”

“I guess I was born with it…” I shrugged, the ridiculous image of me as a baby with a deep voice floating up in my head.

As an early developer, I’ve always been a bit self-conscious of my voice. It broke a year or two before everyone else’s and perhaps sounded unnaturally deep for an eleven year old. Having said that, I’ve always secretly fancied the thought of doing voice-overs and continuity announcements.

I moved around a bit as a youngster, growing up in Manchester, Suffolk and Derbyshire before leaving home. I’ve never really stayed in one place long enough for a strong regional accent to stick, other than having one that was vaguely northern, mixed with a bit of RP.

I think I must inherit it from my grandad. He was the first male on my mum’s side not to go down the pit, preferring to sell groceries in the local co-op instead. He won a cup in the 1920s for his singing, his golden tonsils clear of coal dust.

He was a bass soloist.

My mum, a former primary school teacher who taught me to read at an early age, would pounce on every reqional quirk I might pick up and tell me that unless I was a goalkeeper or politician I’d “never get anywhere in life talking like that”… in other words, talking like someone from her own home town.

She was right. The local neighbourhood produced a couple of well known and strongly accented people who featured on TV quite a lot in the 70s and 80s and they either threw darts, kept goal, played snooker or argued the toss in parliament. *

Our village (where the old ladies would glaze over and remember my late grandad’s ‘lovely voice’) was a working class enclave of such broad Derbyshire dialect that people regularly referred to each other as ‘thee’ and ‘tha’ and, more bizarrely, pronounced the word handle as “angle”, and the word angle as “handle”.

So when one of my colleagues thought I might be ideal for providing the voice in a covid themed spotify/instagram ad campaign directed at young adults, it was a little bit of a Jim’ll-Fix-It moment for me. I leapt at the chance to give it a go and I recorded a series of phrases for it on my phone in my slightly echoey back room.

So here I am, I’m now interrupting music in the headphones of tutting teenagers and young adults within a certain radius in the East Midlands. And, as my colleague jokingly pointed out, I now have a little portfolio of videos for any future career change.

So if anyone would like to buy my voice you know where to come, and if you ever hear me reading the shipping forecast you can rest assured that I have achieved my ultimate goal in life and the old ladies of north Derbyshire would be proud.

* Barbara Castle, Dennis Skinner, John Lukic, John Lowe, Bob Wilson, Nigel Bond, and Gordon Banks to name but a few.

“It’s a miracle!”

I don’t want to tempt fate and I don’t want to count chickens before they’ve hatched or any of that but…

…It seems I can walk again.

Now, this doesn’t mean I’ve been to see some Jim Jones style preacher, and it also doesn’t mean I’ve quaffed some magical elixir derived from a temple in a South American rainforest either.

What I mean is, I can now walk a bit further than I could.

I often go out for a walk before breakfast on weekdays (weekends are for ‘lie-ins’ *). Until last week, I’d tell anyone who asked, that I wasn’t able to walk more than a mile or so before my legs would turn into some sort of high-density jelly; my feet dragging on the ground; getting tangled with my walking stick etc.

Over the last week, I’ve been able to walk (fanfare)… three miles!

Not quite as exciting as an Indiana Jones adventure, but massively exciting for me. I live on the edge of town, so I can now access some countryside, and I’m also achieving my rather modest daily step target of 6,000 steps by 8am.

I’m currently leaving the house at six, wrapped up warm as the sky becomes lighter. I’ll find a footpath across some fields behind my daughters’ secondary school and head off on some farm tracks, the early morning air filled with the sound of woodpigeons and blackbirds, and the gentle rumble of traffic in a town waking up just a few fields away.

It takes me an hour and a half to do three miles, which isn’t that fast compared to the way I used to be, but I’ve been following my physio’s advice by planning a route that takes in as many rest stops as I can find. These rest stops include benches, low walls and grassy hummocks to plonk myself down on, and fence posts to lean against.

I’ll get back home, just as the local dog-walkers are emerging from their front doors. I’ll make a nice pot of tea and pop a couple of slices of toast on while the rest of the house is waking up.

Crucially, I have enough strength and energy to stand and walk within the safe confines of my kitchen whereas before I’d still be lying in a quivering heap on the floor of my porch, struggling to prise the shoes off my feet.

I’m not one hundred per cent certain where this sudden capability has come from. I’ve been worried about my mobility getting worse, and I suspected Secondary Progressive MS might be on the cards, but I had a full brain and spinal MRI the other week and I haven’t heard back from my neurologist yet.

I’ve decided this must be a good sign.

I’m hoping this is just the remission after a relapse. One of those stealth relapses you don’t notice have happened until it’s too late. There will also be an element of my neuro-physio’s advice echoing round my head as I walk.

I’ve always been into walking as my favourite physical activity. Even when I lived in the East End of London I used to knock up a good eight miles some days, while working for Hackney Council, striding between offices and along the canal towpath that used to skirt where I worked.

So I’m not mincing my words when I say that not being able to get out for a good walk has been really distressing over the last couple of years. I’m tentatively hoping I can reassemble the broken shards of this relapse – if that’s what it was – and build on what I can do now. I find I’m now spending slow moments in my working day, planning small extensions to my current route on Google Maps.

You don’t really appreciate what you’ve lost until you lose it, so while the rest of the country is getting their jabs and anticipating the end of the COVID lockdown (I’ve had mine, by the way), I’m struggling to feel anything about it. Instead, I have something precious and delicate; something that could be snapped away from me in an instant; something that seems to be showing some signs of life again, and that’s all I can focus on right now.

* weekends = 7am



in a pot


rinsed not washed

piping hot

leaves not bags

don’t over-mash

milk just a dash

red as brick

drunk quick twice a day

twelve hours apart

leave it neat

nothing sweet

let it fire up the heart

let it scald the osophagus and make you frown

forcing you to sit up

as it goes down


* mash = brew (local dialect)

The angel in the bracken – an appreciation of David Cobb

A quarter of a century ago, as a geology student, I spent the best part of my summer mapping Ordovician volcanics on a mountain in the Snowdonia National Park.

With only the local wildlife and the occasional sheep farmer for company, and with the sun slowly blistering its way through the sky, I’d enjoyed the solitude and the opportunity to work through the tuffs and rhyolites at my own pace. So long as I made it to a remote car park at the end of the day to pick up my lift, I was my own boss.

Late one afternoon, desperate to re-join civilisation, and with food and pub opening times beckoning, I finished my day by spending a couple of hours clambering gingerly down the rocky terraces to a path I’d found on the map where the ground flattened out.

This proved to be a hair-raising experience. As I wound my way down, trying to find the best route I could, I contended with teetering boulders the size of small cars wobbling under my weight and, while mid-air, dropping from one level to another, an adder bolting for cover.

When I eventually reached the bottom, nerves a little frayed, I came to the awful realisation that the final jump of five or six feet into the impenetrable bracken beneath could actually be anything up to ten feet.

The risk was, of course, that I could break an ankle or worse by falling onto hidden rocks. Unable to move and obscured from view by encompassing fronds, only the circling red kites would hear my cries for help amid a bleating chorus of sheep. With this nightmarish vision in mind, I spent a few minutes considering the sobering alternative which was to climb back up the mountain and find a more sensible route, snakes and all.

While pondering my dilemma, a man who must have been in his sixties, wearing apparently nothing but walking boots, shorts and a backpack, breezily waded through the bracken a hundred metres or so from where I was perched. This was the first human I’d seen on the mountain for days and it gave me the impetus to jump. At least I’d be able to shout if I hurt myself, I thought.

I made the leap and survived unscathed.

The mystery hiker carried on, oblivious to the fact that he’d acted as my guardian angel that day.

During my transition into editor of Blithe Spirit, the journal of the British Haiku Society, my mind spun with the possibilities of what it might entail; how I might approach the job; what features I could introduce and what articles and reviews I could commission. Would I be able to fill the 80 pages? Would I be able to build on the work of my predecessors? And, perhaps most importantly, would the readership approve of the end product?

Editing my first issue had commenced with the dribs and drabs of a few early-birds. Poets whose names I’d eventually recognise as those who ignored official submission dates. Approving and editing their work seemed to come fairly easily and fitted nicely with my ideals of what I thought might make an interesting issue in terms of poetry. Despite this, the nascent journal lacked substance. I needed something with a bit more weight to bulk it up and get my teeth into.

And then came David Cobb.

Early in my settling in, he submitted a cold war themed haibun and asked for my opinions on it. I was surprised to find that these opinions existed – there were definitely areas I felt could be improved and it incorporated a sequence of haiku where I thought a few tweaks could be made, so I sent an email in response with my humble opinions.

As a newbie editor, I hit the send button, not without some trepidation: who was I? A mere mortal offering my suggestions to this behemoth of British haiku; one of the founding fathers of the society whose journal I was now at the helm of?

As it turned out he seemed to value my opinion, making some of the changes I’d suggested, and we bounced a few more ideas around regarding the same piece. A few email exchanges later and it was honed into something we were both happy with. I was enormously pleased to include it in Blithe Spirit. One page down, seventy-nine to go.

The ice had now been broken, and with submissions from others starting to gain momentum, I began to feel comfortable in the editor’s chair. I was starting to worry, though, about how I might obtain articles – would they arrive for approval in the same way as the poetry, or would I have to actively seek and commission them? I didn’t know where to begin. I later discovered that the editor’s role could at times be quite an awkward one. I often felt cheeky asking for and chasing up content. It felt to me as though I was putting people out; people who had volunteered their time and intellectual property. In the early days, I didn’t really have an idea of what the next issue was going to turn out like, let alone be in a position to plan a couple of issues ahead. Until I could do this, the pressure of finding the more substantial content – articles and reviews – weighed heavily.

David then submitted a review of a book of First World War poetry by Julien Vocance. I had been wondering about a loose theme that would knit my first edition together and with the centenary of the outbreak of the First World War still in recent memory, I wondered if he might know of anyone I could approach who might be willing to pull together an article about war haiku.

It was obviously a subject that captured his attention as he generously volunteered his own services. Within a matter of a week or two, he’d provided me with my first article and it didn’t take long before we’d drummed it into shape. I could breathe a huge sigh of relief.

I’d also heard of a lecture that Judy Kendall had delivered on the war poet Edward Thomas, so brimming with confidence I asked if she’d like to write it up and submit it. To my pleasant surprise, she agreed, and once it was in place my first issue hung together quite nicely. Eventually the deadline day approached and everything fell into place: artwork, printers, everything. Now I had a journal I could be proud of under my belt and I could sit back and start thinking about the next one.

Future issues were peppered with the occasional Cobb haiku or review and he was always happy to offer an opinion, give advice or send material through the post that he thought I might find interesting. In a later edition, I reproduced a lecture he’d given to a symposium of the Haiku International Association, but apart from that, the most substantial amount of work he’d submitted had been for that first issue.

I often wondered afterwards if David had been testing the water with me. Had he made it his mission to settle me into the role? Had he tested me out with an imperfect haibun that needed polishing? Was all this his way of introducing himself and sealing his approval?

I think the reality of the situation is that David is a man who acted generously towards anyone with the wellbeing of the form, the society and the journal at heart. Without his input, putting together my first issue would have been like struggling up a scree slope peppered with wobbly boulders, and wouldn’t have set the standard for the following editions to live up to.

In my early days as a proto-editor, David Cobb had been my angel in the bracken, walking away having given me the impetus to jump.

After my tenure of Blithe Spirit was over he sent me a lovely letter which I now keep in the folds of my copy of British Museum Haiku – an anthology he edited. In the letter he explained in typically self-deprecating humour that one possible translation of his name into Japanese (kobu) might mean ‘old turnip’.

Today I was saddened to learn of his death at the age of 94 and I will be thinking of him and the generosity he showed not only to me but to the many others sharing their memories today on social media. Farewell Old Turnip and thank you for all the help and imparted wisdom. The haiku world will be poorer for your loss.

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:


or should I say…


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.


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


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


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.