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.

Feeling the heat

Well, last week was a scorcher.

So much so, that I gave up on Fathers’ Day activities halfway through the afternoon and went to bed for a bit. The following day, I dressed for work, drove my youngest to school, and then turned round and headed back home I felt so rough.

Again, I had an hour’s kip during the afternoon. After this I felt brave enough to step outside into our south-facing garden with some crazy idea about hanging out some washing.

Stepping out of the back door, I felt sure, was pretty similar to stepping off an aircraft in Saudi Arabia.

I turned round and went back in.

I felt so fatigued, dizzy and achey that I even Googled to see if I’d given myself cyanide poisoning. I’d made elderflower cordial, and elderflower and gooseberry jam a day or two previously and the stems apparently contain cyanide (in the same sort of way that apple pips do).

To a paranoid, heat-addled, MS-scarred brain like mine, it’s pretty amazing how similar the symptoms of MS and elderflower-induced cyanide poisoning are.

Tuesday, I was pretty much right as rain, so I ventured back to the office knowing that I could leave any time I needed to, and on Wednesday I’d booked a day off anyway to attend school sports day.

My youngest daughter’s school sports day involves a lot of standing up and moving from one event to another. The weather reports said partial cloud.

After two and a half hours of hanging around in full burning sunshine, I ventured back to my car that I’d helpfully parked about a mile away.

It was then that I found it was incredibly hard to walk in any meaningful foot-in-front-of-the-other kind of way. As I was the first one out of the school gates, I wondered what the other parents thought of my stumbling feet; feet that felt like they were made from bags of sand, and legs that felt like they were wading rather than walking.

At least I’d had the forethought of deliberately parking somewhere shady. Slumping into the driver’s seat, I allowed myself a rare emotional moment – probably no more than a few seconds, but enough to release the weight of what I’d bottled up – before turning the key in the ignition and just getting on with the rest of the day.

When I eventually got home there was a letter from Big City Hospital waiting for me. It was my neurologist to say the results of my recent MRI were back. It showed new lesions, apparently.

Now here’s the interesting thing – my neuro’s exact words look designed to set my mind at rest: ‘a small number of small new lesions compared to the scan of three years ago’. For someone who proof reads as part of their job, the use of the word ‘small’ twice in the same sentence stuck out like a luminously sun burned neck. The scan of three years ago that he mentioned had itself shown no new activity since the previous scan when I was first diagnosed, so these are the first new lesions on a brain scan of mine in nine years.

Anyway, my neurologist didn’t think this ‘necessarily need prompt a change in treatment’, but he’s asked that I come in to see him anyway ‘to discuss’.

Hmmm… all well and good if I’m being summoned to ask questions and set my mind at rest, but there’s also a little part of me that feels a little worried.

Back to Blighty blues

I’m just back in the UK after a fabulous trip to Australia and Singapore.

I don’t normally do this, but while I was away, I re-evaluated things a little. What I should be doing to make myself happier, more comfortable and healthier.

The thing about Australia is that there are so many similarities to home – the food is similar, they drive on the left, they seem to have a similar dry sense of humour – that the differences really stand out. Here are a few things I noticed:

  • Jogging is a big deal – I counted 100 joggers on one stretch of path within a couple of minutes from my Brisbane hotel window one morning, and everywhere we went, I’d see people in lycra shorts, tracksuit tops etc just going about their business.
  • Families and social life are a big deal. Parks, green spaces, football stadiums, museums – they all have little huts with barbecue equipment underneath for anyone to roll up and insert a coin or raised wooden picnic platforms.
  • Friendliness – I was only there for a couple of weeks, but they couldn’t have been more accommodating. Even the supermarket shelf stackers were matey when pointing out the milk aisle.

Arriving back to the 70s monstrosity of Manchester Airport, the racist cab driver and people with a weary chip on their shoulder, accentuated things even more and brought me back to Blighty with a bump.

It might just be my holiday state of mind and the places we stayed, though, because I’m sure that Australians can be as grumpy, un-fit and unhappy as the best (worst?) of us. With the wide-open spaces and the better weather, though, it certainly seemed that the quality of life down under outstripped anything we enjoy.

It also probably helped, that I’d deliberately left my medication at home.

After popping that first injection when I got back, I felt a familiar weariness in my limbs that wasn’t anything to do with jet lag. My clay legs couldn’t bear to climb the stairs any more times than they had to and the energy I’d had exploring the streets of Singapore had been sapped. A day or so later I had my first big argument with a misbehaving daughter. The idea that I might get up early and start a pre-breakfast jogging routine seemed more and more unlikely.

It’s been a few days since I got back, now. I wisely took a few days off work to get over jet lag and this has been achieved more or less. But the idea that a week ago I was walking through a humid Singapore with a backpack creating a sweaty square on my t-shirt and a camera that immediately fogged up as soon as we’d leave anywhere air-conditioned, seems almost unbelievable. Particularly when you consider that I was striding through the streets with the rest of the family lagging behind and begging me for a rest.

So what can I do back home?

The biggest issues for me that I can do something about, MS-wise, are fatigue and the pain due to muscle spasms in my legs and feet. Of course, the pain feeds the fatigue and most certainly, vice versa.

I don’t take any pain medication as everything I’ve tried so far (gabapentin and amitriptyline) has given me unwanted side effects ranging from more fatigue to hallucinations. I met my wonderful MS nurse before I went away and she suggested that I give pregabalin a try, so I may do that. I guess it works on the same centres of the brain that gabapentin does though (?) so that’s something to bear in mind. She also mentioned a muscle relaxant, but that might be a bit full-on at the moment and could be a last resort.

The fatigue could be combatted by changing from beta interferon to the relatively symptom-free copaxone with the added complication of daily injections (which, perversely, might be easier to remember).

More importantly, a major contributing factor to both of these symptoms is the fact that I spend seven and a half hours of the day sitting at a computer. I don’t want to keep taking sick leave, but I easily could, I feel dreadful at the end of each working day and even worse by the end of the week.

It’s taken a long time to consider my options, and I’ve spent more than a year weighing this up as it’ll inevitably lead to a drop in wages, but I’ve requested a reduction in work hours to a four day week spread over five days. This would effectively give me a six hour working day. When you consider that I work flexible work hours anyway, this would be a dream come true, give me some much needed space and improve the quality of my life no end.

It would give me the space I need to move at a less hectic pace, to drop the kids or pick them up at school without worrying about making up the hours at work. I would be a less grumpy dad in the evenings and I’d have more time to take up some gentle exercise. I could even water my tomatoes and weed my allotment plot before heading to work in the morning. When I think of the possibilities, the image I have is suffused in a golden glow… an ideal world.

I have requested this as a necessary adjustment to my working life under the Equalities Act. I work in a large public sector organisation and everything they have done regarding my MS to date has been exemplary. I even have paid time off to attend meetings of our disabled workers group if I want to (I don’t, but that’s another story).

I made my request two months ago to the day and apart from an occupational health appointment before my holiday, I’ve heard nothing so far. No letter from human resources, no email in the inbox.

It’s a bit disappointing, but I don’t work for the DVLA, so I expect I’ll get results when I chase it up. I’ll look forward to it opening a new chapter in my life. I’ll keep you all posted.

Relapse

Just thought I’d let y’all know that I had a relapse in the last couple of months.

It mainly involved vertigo and dizziness, so I spent a good couple of weeks crashing into things, nearly falling over, feeling nauseous and actually vomiting a few times. It also involved some fatigue, L’Hermitte’s and a not unpleasant hot sensation near my right ankle.

GP reckoned it was labyrinthitis to start with, so he gave me some drugs for that, to see if they worked even though my MS history has been peppered by vertigo. They didn’t, of course, so instead of going back to him, I went to my neurologist. One Dix-Hallpike manouevre later to eliminate BPPV and my first relapse for three years was confirmed.

I was prescribed steroids, but I didn’t take them in the end as I felt I was getting better and I didn’t fancy a week of the side effects.

Thinking about my GP, I asked my neuro about the possibility of an ear infection…

“Can you hear that?” rubbing his finger tips together next to my right ear.

“Yes.”

“And that?” next to my left ear, this time.

“Yes.”

“Do your ears hurt?”

“No.”

“Then it’s not an ear infection.”

So there you go. It was inflammation of the balance centres in the brain stem apparently. I’m very much better than I was, though I did have a funny turn yesterday so I reckon it’s there in the background somewhere.

Mild relapse?

I have been on beta interferon (Rebif) for nearly two years now and in that time I haven’t had a relapse.

Or have I?

Beta interferon is supposed to reduce the likelihood of having a relapse and minimise the effects if you do get one. Back in January 2009, when I came off gabapentin, I experienced a temporary worsening of symptoms such as fatigue, pain, heavy legs and one instance of flashy lights in front of my eyes. Was it a minor relapse as the neurologist thought? Was it the side-effects of coming off the gabapentin? Or was it the underfoot rumbles of the MS volcano?

I don’t know. I suspect all three depending on when you ask me.

I have a similar thing going on at the moment. In addition to the usual symptoms, I have had a couple of weeks where I have had a worsening of pain in my arms especially, mild spasticity in my left arm and both feet, hands that feel as if they are gently transporting a cactus as opposed to the usual background tingle, heavy legs again, fatigue, mild vertigo, uncontrolled movements in my calf muscles and last night, definite phosphenes in my right field of vision as I moved my eyes around.

So is it the hot weather?

Is it the MS Monster rolling over in it’s sleep?

Or is it a mild relapse?

I’m not inclined to bother anybody about it until my next yearly meet up with the neuro. My neuro is “running late” this year, apparently. Running late in the sense of he can’t see me in June as would normally happen, but will be able to when his appointments begin again in August, and the 115 people in front of me in the queue have been seen first.

In the meantime, I have restarted taking the amitriptyline.

“Sorry, there’s nothing we can do”

There is a stand up routine by Sean Lock where he recounts being told off for swearing by belligerent airport staff. His exasperated reply finishes with “This is exactly the sort of occasion swearing was f***ing invented for!”

Excuse me a moment…

a$%e!…  &u$%&!!…  (%d%*!!! %^&*!!…   f&*^:~!!…  ~*()&*&^$%$”!!!!!!

There – out of my system…

No, wait, hang on…

%&^*£$^%$!!

There. Feel a bit better, now.

I went to see an orthoptist about my doublevision, nystagmus, intranuclear opthalmoplegia and oscillopsia the other day.

I spent about an hour undergoing various tests. I followed a torch with my eyes. I had various lenses passed in front of each of my eyes and I had to say when the image became double and single. I pointed at dots with a long stick (and missed). I looked at various patterns to find the hidden 3D shape and of course I read the all too familiar eye chart.

Things I didn’t know before: I also have doublevision looking up to the right and my left eye doesn’t pull in towards the nose as much as it should do.

I have been looking forward to my doublevision being ‘sorted’ for a year and a half. As I mentioned in my last post, this is the one constant symptom, the one that doesn’t fade away and then come crashing back. The symptom that is constantly breathing down my shoulder reminding me I have MS and it is the symptom that spurred me on into visiting the GP in the first place.

It is also (as I screw up one eye to look at you) a symptom that makes me feel dizzy, tires me out, drags me down and makes me look like a weirdo. I was convinced that the magical people in the eye department of my local hospital would be able to build me prism lensed spectacles to straighten things out for me. Not to wear all the time, you understand, just when I’m at work, or in a meeting, or driving my car, or walking along the street. I’m not asking for much really. Just some semblance of normality.

“Sorry, there’s nothing we can do…”

Apparently, they can’t (or won’t) correct doublevision unless it occurs in the primary position (straight ahead). Also, my eyesight is pretty good – I can read most of the bottom line on the eye chart and if I did have glasses, they would have to be plain glass and the prism lens would blur things a bit for me.

So there I was watching the orthoptist as he moved his head left and right to demonstrate how you look left and right.

Yes, I should be grateful for the fact that I can see, and yes, I should be grateful for the fact that I can see pretty well and yes, it could be a whole lot worse – a hell of a lot worse. I could have been maimed in an accident, I know. But days like this remind me that MS is a complete an utter uncurable bastard. Things will never be the same. I will never be able to look around with my eyes travelling the same speed again. I will never be able to look left and see a single image. I will never be able to look right and keep my eyes perfectly still. I will never be able to read a book without it tiring me out. Things will never be how they used to be.

So when someone tells you there is nothing they can do, that little ember of hope at the back of the hearth that you thought might be coaxed back to life with some newspaper and a bit of careful blowing, is snuffed out with a gallon of water.

And what makes it all so much worse is that I will probably look back on this day and think how lucky I was back then compared to how I am ‘now’.

Doublevision is one of those symptoms that can come and go in Relapsing Remitting MS, but I’m pretty sure that after a year and a half we’re not just talking about demyelination on the nerve controlling eye movement. I think there’s been some permanent damage.

I have an appointment with an opthalmologist in a couple of weeks and they want to look at the back of my eyes and document the “state of things” I guess. They will probably also want to patronise me by telling me stuff I already know about nerve damage and so on.

So, having taken the knock and bottling up all the crestfallen feelings I’m back to the bustle of the hospital lobby. Past the people in Costa coffee. Skirting the guy with the mop and the couple with the walking frames. Through the automatic doors, past the A & E entrance, then the maternity wing with a handful of expectant mothers in dressing gowns, fags in hands.

Back to the car…

Negotiating the one-way system through the car parks…

Waiting for the ambulance to go past…

out onto the main road…

Whack the stereo on full blast to take my mind off things as I head back to town…

The music starts: “There’s no escaping from / the man it seems that I’ve become…” *

…The grief.

* test your music trivia – identify the track and you may or (more likely) may not win a prize (not decided yet, but nothing big and nothing amazing).

Doublevision

Wahay! I am off to see an orthoptist tomorrow to talk doublevision.

Doublevision and eye movement problems in general have been my one constant since I had my last major relapse in 2008. My MS history is littered with symptoms and side effects that have come and gone or have fluctuated with other external factors such as stress, medication, temperature, exercise or pure  bad luck. Doublevision has remained constant since the spring of 2008.

Just like the MS in general, it is a companion but not a friend. It is the doublevision that reminds me I have MS when the other symptoms are lying low for a bit. I also think I have the doublevision to thank for the diagnosis – if I didn’t have it in the first place, I may not have made the fateful GP appointment. I would have probably lived with the tingling fingers, the fatigue, the occasional vertigo, even the pain for a bit longer before seeking medical advice.

Doublevision affects me only when I look left. From a single image looking straight ahead, two side-by-side images appear the instant I start looking left and the displacement increases the further I go. When I first discovered I had it, I tested it every breakfast-time by gradually looking left at two chimneys on the next street. These chimneys would eventually match up becoming one chimney with two TV aerials. It never got any worse, it never got any better. One and a half years on, it is still the same.

People ask me how I manage to drive with it. The answer is, I close one eye when looking left. Simple as that.

I find that I am constantly screwing up one eye in everyday situations, though, or I would have difficulty recognising people in the distance, crossing the road, participating in meetings and so on.

When I go out for a drink (I honestly don’t drink very much), I makes me feel drunk/ill way before I should do.

It doesn’t normally bother me. It’s constancy means I have learned to live with it. But it does tire me out and this has an impact on my mood and fatigue levels.

There are two possible solutions. One is to wear an eye patch. The other one is to wear glasses with prism lenses. I have no idea what these spectacles look like, so I have the fear of becoming the kid with the sticking plaster holding together a pair of national health specs. But then again I don’t fancy becoming Long John Silver either, therefore I have the orthoptist appointment tomorrow. It has been a long time coming and should hopefully have a positive impact on my quality of life.

A further appointment with an opthalmologist is scheduled for later this month.

Birthday hangover

It was my birthday at the weekend and now I’m hungover.

I must have had a good time… Hmmmm… Yes, I guess I did…

Saturday started by taking my eldest to her dance class and back. I started my pottery tuition in the afternoon and on Saturday evening, I ventured into Sheffield to see Reverend and the Makers play a storming hometown gig.

Sunday was my actual birthday, so I managed a little bit of a lie-in before bombardment by breakfast-in-bed wielding daughters. This was followed by a long trip to the supermarket. Then, picking up their Grandad en route, we visited one of the local parks’ play areas where we had a go on the resident miniature train.

This was followed by a slap-up meal in a local eaterie, including an ice-cream dessert with a candle on top before a round-trip to show the girls Matlock illuminations.

Monday involved a day off work to do some much needed gardening, followed by helping my daughters decorate my birthday cake. By the evening, I was dropping off in my chair, so I had a brisk walk around the block to blow some life into me.

So, yes, a very enjoyable birthday… and now, even though I didn’t drink a drop of alcohol, I have a hangover. A hangover caused by dragging a monster round with me all weekend. My head feels fuzzy, my hands and arms are buzzing, my legs feel like lead. I can’t stop yawning after midday and I know I am going to struggle to keep awake after the girls’ bed-times tonight.
I often hear people of “a certain age” claiming that “you’re only as old as you feel,” before twirling their umbrellas and tappity-tapping out a dance routine. If that’s the case, I guess I have just reached 98, not 38.

STOP-PRESS: as I was typing this I recieved a phonecall from my local Occupational Therapist to say that I had been referred to her fatigue clinic. My first appointment is next week. The OT sounded very dour, like the last thing she wanted to do was see me, so I will keep you posted.

Experience of fatigue

Up to eighty-seven per cent of people with MS, including myself, experience fatigue at some point. It is important to us that people don’t think fatigue is the same as tiredness. It is the most draining experience imaginable and it can happen for no apparent reason.

I went to a talk by an occupational therapist the other night on fatigue and it’s management. As part of his presentation, he included quotes from some of the people with MS he has consulted with over the years.

I thought it would be useful to re-quote them here as I am sure these statements will resonate with the fatigued among us and go some way to help explain what it is like for others:

“Fatigue can literally reduce me to tears, for no reason, I just find I’m crying – it’s like the plug has been pulled out and my energy, almost my life feels like it is going down the drain…”

“I feel like I’m in a jail cell as I’m so tired all the time…”

“It feels as though my legs are full of lead, it’s literally like wading through treacle trying to do things…”

“It hits me like a wall and then I can’t do anything… There’s no real warning to it happening. Sometimes I’m not even sure if I’m awake.” (Oh boy, yes!)

“It’s hard to describe to someone that you’re feeling fatigued and tired when you’ve not actually done anything. I used to be so active.”

Prior to my diagnosis, when I was going through the darkest hours of a relapse, I had a number of afternoons at work where I had what can be best described as a waking sleep at my desk. It was deeply worrying to say the least and I remember the thought “What’s happening to me?” playing on a loop in my head.

Perhaps the hardest thing about fatigue is that it is invisible to everyone else. I’m not being lazy or unhelpful and I can still do everything I could do before, it is just that sometimes I can find everyday tasks exhausting.

Further information

ffffffaaaaaaaatiiiiiiiiiiiiguuuuuuueeeeeeeee…… er.. [ctrl-alt-del] Damn!.. Didn’t work.

I have been reading a recent issue of ms matters (quarterly MS Society magazine). It had invited readers as part of MS Week, what they thought was the most common misconceptions around the disease – usual stuff – wheelchairs; appearing to look well etc.

One of the more common misconceptions centred around fatigue, how it is generally percieved as being a bit tired or even plain laziness.

The only way I can describe full-on MS fatigue is, imagine you are working on a computer and you want to install a new program or you are downloading several megabytes of information and you PC crashes. Everything freezes, the egg-timer doesn’t look like it is ever going to be anything other than that indefinitely.

Having MS fatigue is just like that – a sudden brain-crash. Nothing works. I have been jolted ‘awake’ from such moments when I have realised that I have just spent a period of time (seconds? minutes?) where I have been thinking zilch, nada, nothing at all – a completely empty thought process. I just didn’t seem to have the energy to think. While that’s quite a scary thing to realise, it’s even scarier to feel your mind sliding back into that position again only seconds later. It’s like my brain has been determined to shut itself down, but without the luxury of a ctrl-alt-del.

Of course, that’s the mental side of it. Physically, it’s like being in a four-legged race with both legs strapped to sumo wrestlers.

Right – now I’m off on my holidays. Going to do battle with hot weather.