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.

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

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.

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.

The Beta Interferon blues.

I’m about to go back on Rebif after a four week trial period of coming off it.

It wouldn’t be the first time I’ve done this, I tend not to take it on holiday (just a hassle) or over Christmas (to give myself a break).

So, have I noticed any changes?

On the negative side, I’ve noticed some extra dizziness and tingling arms and hands. A couple of days ago I woke up with a partially numb right forearm extending into my little finger, which isn’t usual for me.

And that’s it!

Of course I realise that a prolonged period off the meds increases the chance of a relapse etc, so I’m going to start injecting again tonight to see what happens next.

On the positive side (and this is a big one) I’m happier.

Granted, I’ve been on holiday to Florida over the last four weeks which might explain my improved Disneyfied mood, but I haven’t had the usual back to work blues this time.

I can quantify the improved mood as well.

A couple of months before I came off Rebif, my GP asked how I was feeling and handed me a mood questionnaire. The same questionnaire is available on the NHS website. I scored pretty highly: 15 out of 20, I think, which puts me bubbling under ‘severely depressed.’

If I complete the questionnaire now, I score 3 or 4, and I get those for MS related things rather than anything mood related. I might get up a lot in the night, for instance, because of my bladder.

Because my mood has improved, I’ve been eating less and been more energetic. I’m also sleeping better. My wife jokes that she doesn’t know many people who can go on holiday to the States and lose ten pounds, but I did. Ten pounds!! In two weeks!

Among the listed side effects of beta interferon 1a (Rebif and Avonex) is suicidal thoughts and depression, so it will be interesting to see what happens when I resume the meds. I’ll be monitoring my mood score and contacting my MS nurse if my situation changes.

The medication choices have changed in the six years since I was diagnosed, so if the worst comes to the worst I’ll have some research to do.

Anyway, wish me luck. Time to get those syringes ready.

Making lemonade #2

Way back when I started secondary school, a rumour went around that all the boys would need a medical during the first term. This would involve a procedure where a nurse would hold our testicles while we coughed.

This never happened, of course, but a part of me believed it. It made the eleven year old me unduly anxious to say the least.

I often think about how cool it would be to be some sort of guardian angel to my awkward, shy, younger self. I’d put a supportive arm around my own shoulders and whisper something into my ear… some mature advice to make me feel better: “That thing about a nurse holding your bollocks? It won’t happen. It’s utter nonsense… ha ha! Just you wait another 30 years.”

Fast forward to the other week…

I’ve learnt a new skill!

It involves passing a foot long length of tubing into the most sensitive and private part of my anatomy.

The first time I did it, I had my trousers round my ankles, while a nurse (female), who I’d met for the first time barely 20 minutes previously, looked on, rubbing my shoulder in a supportive, encouraging manner.

Yes, I have to catheterise myself at least twice a day, now, due to the fact that I retain approximately one pint (500ml) of urine in my bladder, even after visiting the loo. The urology nurse who came to visit told me that anyone who regularly holds 400ml of urine is advised to catheterise (the MS Trust say anyone holding more than 100ml), so I fall (un)comfortably into that bracket.

I’ll be performing this procedure for approximately… hmmm… how many months? Oh wait!… The rest of my bloody life!

I’ll be honest with you. The first few days you try it, it isn’t easy to do. I winced each time at the prospect of threading the tube into such a seemingly tight space. I also had to change the type of catheters I was using as the initial bendy latex ones were causing too much pain and I was finding blood in my urine. Plus I found them as easy to hold as a live eel. But two weeks on, with stiffer, differently lubricated catheters, it’s a lot better, and I feel a lot calmer doing it.

So has it worked? Do I visit the loo less urgently? Do I go less often? Do I finally have an unbroken night’s sleep?

The answer to that is yes and no.

I can’t describe how crestfallen I felt on the first night. After painfully tubing myself before going to bed, I woke up at 2am, 4am, and then 6am desperate for the loo. It was as if nothing had changed. Nothing except for the fact that I now had to perform some sort of low level surgery on myself.

After a few nights of this, a phonecall to my MS nurse and a visit to the GP meant that I’ve started taking solifenacin tablets to relax the bladder muscle and reduce the urge to pass water.

It’s early days still, but I mostly wake up with my bladder just once a night now (and I catheterise when I do). During the working day I might make a trip to the loo, two or even three times in my six hour shift, instead of three times an hour, so to me, it’s an unbelievable turnaround. In the daytime I couldn’t be happier. I’m getting to be friends with my bladder again and it turns out he’s quite a nice guy.

There’s still the element of waking halfway through the night to contend with, though. I wonder if part of it is to do with learned behaviour. Perhaps my body automatically wakes up at regular points during the night and now needs to be retrained. I’ve tried to combat the night time loo visits by cutting down massively on the amount of caffeine I take in and the drink of water I have with my evening meal is often the last liquid to pass my lips every day.

It’s early days on the pills, though. Tomorrow marks one week of taking them and the GP told me it takes about seven days for them to kick in (the MS Trust says up to four weeks), so we’ll see how it goes. I don’t remember the last time I managed to sleep through the night without waking. The day I finally do, I’ll be partying.

Making lemonade

“To make lemonade out of the lemons life throws at you, you sometimes have to strangle kittens.”

Somebody tweeted that recently. Oh wait!… It was me! I tweeted it!

Why?

Because to aid a restful night’s sleep and to stop myself getting urinary infections, I will now have to self-catheterise every day, at least once a day, for the rest of my life.

Hooray! MS rarely gets sexier than that, eh?

Oh well, something else to put on my health CV.

So what’s happening?

I went to the hospital for my yearly check-up this week. I had to have a bladder scan after my usual neurologist appointment. Despite this, I needed a wee really badly when I finally got to the clinic and I used the loo before I’d even checked in at the desk. I’m sure you won’t mind me saying – it was a nice big wee.

45 minutes of waiting room passed as all sorts of MS patients came and went. Some who looked fitter and healthier than me to those in wheelchairs. MS waiting rooms are funny places. I always sit at the back, so I can look out over the city (the clinic is on the 11th storey of a hospital on top of a
hill). I always feel like I’m being weighed up by the other patients when my name is called and the very slight limp I have and the clumsiness I feel as I circumnavigate all the chairs seems amplified all of a sudden).

After my usual questions with the neurologist I got to see one of the MS nurses. Not my usual one.

He scanned my bladder – I had about 640ml of urine in it. I was just about ready for another wee, so he gave me a bed pan and off I went to the loo again. Again, it felt like a nice satisfyingly big wee. As it trickled to a stop I had a slight residual feeling there was more there but the feeling passed and I couldn’t go any more.

The reveal moment came when he told me that I’d managed to pass 120ml of that original 640ml and sure enough the follow up scan revealed that I had about 500ml of wee still inside me. To put it in context, a bladder can hold up to 1.5 litres, so that pint of wee I’m carrying around everywhere is about a third of a bladderful.

I think I can say I was mildly shocked.

Anyway, treatment options were discussed and we both decided that self catheterisation was the way forward. This will involve passing a thin lubricated tube, about a foot long into my bladder every day, once or twice (or more) a day.

It sounds potentially painful, but to his eternal credit he intimated that he’d tried catheterising himself to see how it felt. Just so that he could talk honestly about it to his patients. I felt completely reassured about it and I’m sort-of looking forward to the nursing team who will visit me in the next
week or two to show me how it’s done.

Actually, I’m not looking forward to it at all, but if it needs to be done, it needs to be done, and I’ll have a follow up appointment with the MS nurses in a month or two to see how I’m getting on.

A lot is said about specialist MS nurses and how great they are, but let me say this… I have received care from my MS nursing team for about five years now and going to see them is like going to see a good friend. Even though I’d only met this nurse for the first time, we had a long chat about music, bands we’re both into, cycling, drumming, vegetarianism, local neighbourhoods I wanted to explore after my visit and so on… He even made me a cup of tea. Despite the white coats and the technical equipment hanging from the walls, I completely forgot I was in a hospital.

I said as much on the online hospital feedback form the next day – credit where it’s due, and all that.

Travelling the ten or so miles into the big city and the usual pains of parking spaces, students and traffic congestion put aside – it’s always a pleasure to visit. Long may it continue to be so.

Three cheers for MS nurses!

Incidentally, I nearly chose “Taking the piss” as the title for this post, but felt that would have been unfair.

More soon…

PS – the shaking I experienced recently, didn’t tick the boxes of a fit, but may have been some residual dream-movement, like I thought.