Dave's Magical Brain

My mum used to tell a story about a well educated young man going for his first teaching job in a tough North Derbyshire mining village.

He was still wet behind the ears and he had traveled a long way. He didn’t know the area and someone had given him directions on a scrap of paper.

He eventually arrived at the school on a road of terraced housing. The road was unmetalled and the worst of the potholes had been filled with clinker from the nearby iron works. Looks were being shot in his direction from the doorsteps.

He was slightly early and he was shown to a seat next to the headmaster’s door.

Feeling nervous as the clock ticked past the interview time, he realised that he was still holding the scrap of paper.

The note was getting dog-eared and there was no obvious place to dispose of it.

Eventually, twenty minutes late, the forbidding figure of the headmaster blustered past. He was a well set man with a thick moustache and he looked like he took no nonsense.

He wordlessly gestured that the young teacher should come into his office and sit at the heavy oak desk.

Sitting directly opposite, he glowered at him.

The young graduate was conscious of the paper he was still holding and, desperate to break the ice, he stuttered “Um…er… excuse me but.. erm… wh.. where’s the bin?”

The head took a deep breath through his nostrils.

“I’ve been for a SHIT but it’s nowt to do wi’ thee.”

..and that’s Mum’s story! For context, Mum came from a mining family and taught reception class at Park House School in Pilsley in the 1950s. This story was a well-worn staff room favourite.

My dad used to share a story about a newly ordained vicar. The young priest was happy to be meeting his bishop in the field for the first time, and very excited to be shown his church, as he’d been promised.

(My mum had a funnier story about a newly qualified primary school teacher. I’ll tell that story at some other time though.

Not that it matters, but to me the story sounds very contrived, like a parable told to young theologians as they graduate and commence their careers.

Equally it could be about Dad himself meeting the Bishop of Chester in the centre of Stockport as that’s the image I always had in mind. Stockport is where Dad did most of his vicaring.

The bishop had shown the green cleric around the centre of the town where he was to serve. Here, they went for a long walkabout, talking to the public, market traders, delivery people, and shopkeepers who’d crossed their path. 

The townsfolk either avoided eye contact, laid out their lives and worries in detail, or just held amiable smalltalk.

After what seemed like an age, the nascent reverend could contain his impatience no longer. In a quiet moment, he turned to his bishop and asked “errm… excuse me, but when are you going to show me my church?”

The bishop twinkled, and sensing an open goal he gestured widely, and delivered his punchline: “Son… I’ve just spent the morning showing you your church. These people are your church!”

And that’s the story. 

It neatly sums up my dad’s attitudes and philosophies though. During his professional career, Dad had always been very mobile – visiting his flock in their homes with his pocket bible and his travel sized communion kit. His hospital chaplaincy came with a bleep for middle-of-the-night end-of-life emergencies.

I remember once watching Antiques Roadshow with him when a young vicar from somewhere middle class, rural and ‘down south’ brought what turned out to be an almost priceless oil painting to be valued. This was a painting that had been hanging on the vestry wall for longer than anyone could remember.

It was worth a hell of a lot and provided the culminating highlight of the show. “Oh…” came the reaction in the TV primetime money-shot, “that’ll buy us a new bell for our church!”

I wondered if his terrestrial employers, and indeed his heavenly ones, might have other ideas.

“…or you could donate all the money to your local food banks, I guess.” I opined.

The government’s ‘austerity’ policies meant ordinary people were feeling the pinch and worse. Real poverty was on the rise.

I glanced at Dad.

He looked cross, nodding his head and loudly tutting at the screen.

So that gives you a bit of a feel for where Dad sat, and also, actually, his attitudes to some elements of the Church of England, years before he crossed the Tiber. 

The education wing where I now do my volunteering is situated to the rear of the large sprawling hospital where Dad was chaplain until his official retirement in the early 90s.

I pass Dad’s old chapel every time I visit. This is about once a month. I’ve often thought about having a look inside. The chapel door is always propped open as it should be but, for the first time since Dad’s retirement, I decided I should go in to have a think about both him, and the enjoyable but exhausting teaching session I’d just been in.

I knew he’d wholeheartedly approve of me loaning my living head out for the day. He would have popped in to watch, I’m sure, so I wanted to soak up some of his vibes.

When Dad had been the chief chaplain, the room had been fairly simple and spartan with just chairs, a set of shelves for hymn books, an organ and a wooden altar with maybe a candle or two. Everything in his day had looked new and fresh. Now, there were all manner of cloths and banners draped over the walls and altar. It looked well used and well cared for… cluttered but simultaneously uncluttered.

There’s a dedicated multi-faith prayer room opposite now, but Dad was always careful to point out that his chapel should be welcoming to all faiths, beliefs and non-beliefs. It provided headspace for anyone who needed it. These days people might find this in the coffee shops and the boxy blinker-winged socially-divided post-covid seating of the entrance lounge.

The chapel now feels very churchy and very firmly Christian. 

Two of the pennants placed next to each other on the wall read “love” and “joy”. ‘Hmm…’ I thought, recalling a fictional TV antiques dealer. And then I paid my full attention to the two windows which were now stained glass.

One of the windows seemed to symbolise birth. It depicted a rising sun and daffodils. An Easter scene, perhaps. The text on the window dedicated the scene to ‘all our babies’ with the unspoken implication that it included those who hadn’t made it, or whose births hadn’t gone to plan. Comfort perhaps to parents who had entered the maternity unit only to leave with their lives upended.

The other window depicted a local landmark – a church spire – nestled in a pastoral scene of green rolling hills. It was dedicated to ‘all our patients’ – in other words the local community. The image incorporated a stylised ECG pulse.

A heartbeat.

While I sat and absorbed everything, someone entered the chapel and sat behind me. I greeted them quietly over my shoulder and an older female voice quietly said hello.

I knew what Dad would make of the windows. He would have generally approved of them, I think, but he would have followed up with “and what about the staff?”

A hospital after all, is not just the people who use it. Stress, heartbreak and fear affect those who work there too.

I eventually stood up to face the door and I smiled at the woman behind me. Oddly, she didn’t smile back but seemed to be glaring at me almost in awe. Maybe she recognised me from somewhere; maybe I had been surrounded by a mystical aura.

I called a taxi and I had a delightfully friendly and chatty driver all the way home – a down-to-Earth local ex-miner type who told me a story about his lovely neighbour. His neighbour was apparently a Polish man whom he seemed to have a lot of time for. 

He sounded like the kind of guy you’d like to live next door to. The sort who’d take your bins out and feed your goldfish while you were on holiday.

My taxi driver had only recently discovered that his neighbour had worked in the Accident and Emergency department when he’d kindly treated Mrs Taxi’s broken foot.

How nice, I thought. The literal embodiment of ‘love thy neighbour’.

When I got home, I had a sit down for another good long think. I had the house to myself and my tired introverted sensibilities demanded some downtime.

With a cup of tea in one hand I opened my phone with the other.

It was December the 9th.

Funny I should choose that day to pop in to the chapel. It dawned on me that it was precisely seven years to the day since my dad had died.

No wonder my chapel companion had been aghast when I stood up. God knows who or what may have been standing behind me.

I like to think it was my dad sharing notes with a host of angels, my guardian angel among them, no doubt.

To me, there seems to be a whole heap of hardship and wrongness in this world currently, so it gives me a lift to have a morning filled with such positive energy.

One of my students, who seemed to be of a more mature age than the rest had approached my head with a lot of trepidation and had seemed very nervous. He voiced that he wasn’t used to being watched when he examined patients. He had a great bedside manner though, and I’d felt completely at ease.

I told him as much. I also mentioned that he had strongly reminded me of a good friend of mine who would also have felt uncomfortable in the spotlight. He had sat up straight at this and his face lit up.

A few days later, I had a chat with a colleague of Asian descent. They had seen a very noticable rise in racism since the Brexit vote and stated they only really felt safe in the city where they lived.

Someone I know often points out that they think things aren’t so bad, and that if you were to suddenly collapse on the High Street, there would be no shortage of people who would come to pick you up and make sure you were OK.

That’s a nice comforting image, but I’m not over-confident you’d feel that way, particularly in some of our smaller towns, if you were Black.

That referendum was the opening of Pandora’s Box for sure.

I don’t make new year resolutions per se, but I think it’s important for me to go out of my way to be kind. Particularly for anyone who may be a target of hate.

I was going to say the church could do more but I have recently heard about the support one of our local churches had been giving to Afghan families. Maybe it’s the Archbishops who could be more vocal on a national stage. Let’s see what their Christmas messages are for a start.

I don’t know. Maybe I’m being unfair.

I for one don’t want to live in a country full of angry racist white blokes, so let’s put ourselves in others’ shoes and spread some peace and love around, just like the woman with an Eastern European accent whose car came screeching to a halt when she’d witnessed Mrs Dave carrying me home this summer.

Anyway, whatever your belief or non-belief is, make sure you have yourselves a lovely Christmas.

At the age of 9, I narrowly missed out on setting a world record.

It was 1980, and I was living in the wilds of Suffolk, about halfway between Ipswich and Norwich and about 7 miles from the coast.

In other words: ‘the sticks’.

In many ways I had the cliché of an ideal childhood for the 3 years I lived there. I did have problems at school – it had taken a while for me to settle in with the local yokel kids, but I also had a little gang of friends that I played out with during the long sun-baked summer holidays. There was so much imagination on our doorstep.

It was farming country with the occasional village and hamlet nested into the landscape between the fields of sugar beet and cereal crops. Above us in the Cold War sky, locally-based American tank busting aircraft would patrol in pairs.

The landscape, though farmed intensely, seemed wild to me, whether it was in the high skylarked summer, or the dark muddy wood-smoky winters.

The ditches and copses were populated with small animals that crawled, hid, slid and scampered, and our garden would often be littered with presents from our cat: the remains of fieldmice, moles, shrews and voles, stiffened with rigor mortis yet wriggling with maggots. What appeared to be the ribs, hip joints and jawbones of larger mammals would occasionally wash out of ditch edges to be prized as trophies by me and my friends. Even our house, a new-build vicarage, appeared to have a substantial population of beetles and earwigs.

The land was both life and death. It belonged to the devil dog Black Shuck and it begged to be explored.

I would spend whole days either on my own or with my chums, building dens, damming drainage ditches, catching sticklebacks in jars and ousting imaginary foes from the abandoned pillboxes that sometimes cropped up at field margins.

I would only return home at the end of the day when the complaints from my empty belly became loud enough to hear.

Our driveway was about a quarter of a mile long. We shared it with the church and the imposing Old Rectory. When I wasn’t booting a football against the wall of our house I would spend hours just cycling up and down. On the long summer days I needed very little encouragement to go out, explore and enjoy life.

One of the navigational aids for the World War 2 American air force pilot returning to the airbase in our village, was the round Saxon tower on the Norman church. Forty years later, my dad was the vicar.

The flint tower had originally been built as a lookout post for spotting marauding Viking invaders rowing inland up the River Blyth. It occupied a slight hilltop in an otherwise flat landscape.

This raised ground was ideal for me to launch myself into the record books and worldwide acclaim by becoming the land speed record holder for someone cycling a Raleigh Tomahawk.

I didn’t have a helmet or elbow pads but I did have an image of myself as Evel Knievel wearing an imaginary cape and pulling imaginary goggles over my eyes as I pushed my bike as far back towards the church door as I could. As I prepared to cheat Death, a statuette of St Peter looked down from above the door and I readied myself for take off.

Counting down from 10, as if on the launchpad at Cape Canaveral, I pedalled my Tomahawk as fast as I could down the incline to the paddock at the bottom.

Raleigh Tomahawks were the baby sibling of the Raleigh Chopper. They didn’t have the Chopper’s gearstick but they did have the iconic banana saddle and unfortunately for intrepid speed pioneers like me, the fatal combo of a small front wheel and a large back wheel.

Over a certain speed this would induce an uncontrollable death wobble for the rider.

I found this out halfway along my trajectory.

I struggled to keep control.

I flew out of the graveyard, across the tarmac driveway, and as soon as the front wheel hit the clumpy grass of the paddock on the other side, my bike became a trebuchet, flinging its pilot high over the handlebars.

The clay soil of the paddock had been baked hard by the long hot summer. My body catapulted into the earth. I must have flung out my left arm to break the fall and my wrist bore the brunt of the impact.

The pain was white hot. Crying hard, I limped my battered, beaten up bike and my bruised body back home.

My mum did what any sensible mother would do when the nearest A&E was over 10 miles away along the back lanes and B roads of East Anglia: She cleaned my grazes, wiped the tears, blood and snot from my face, wrapped a cold wet tea towel around my wrist, and sat me down in front of Jim’ll Fix It with a plate of Findus crispy pancakes and a bottle of ketchup.

Tough love.

The pain and swelling must have dissipated eventually but I can’t remember how long it lasted. A few days, maybe.

Fast forward a quarter of a century and I’m dancing…

I’m dancing in the kitchen with my eldest daughter. She’s about 4 years old at this point and it’s Friday teatime. We have the radio on loud. Popping some groovy moves I turned and my socks slipped on the wooden floor.

I reached out my arm as I fell.

It was my left arm.

My daughter giggled at my wild clumsiness while I gently held my forearm to my chest. The pain was debilitating and I thought I might have broken something.

“You’re not thinking of going to A&E are you?” Mrs Dave asked. “It’s a Friday night. You won’t be seen until the morning. You might as well take some paracetamol, get some sleep, and go first thing tomorrow.”

I don’t think I got much sleep but she was right. I joined the queue at the front desk at 9am.

I was seen fairly quickly, too. I had my arm x- rayed and I was given a splint like a velcroed fingerless glove incorporating a metal bar to keep things straight and supported.

Beckoning me into a side room, the doctor whipped the x ray of my arm onto a lightbox.

“Well, you have broken your arm,” he said, flipping the light switch and aiming a ballpoint, “but not anytime recently. Look…”

He pointed out a v shaped notch in my ulna.

“If it had been a fresh break” he explained “it would be jagged and splintered. We’d see smaller loose fragments of bone in the image but this has been eroded smooth by the years. Can you think of a time in the past when you may have broken your arm?”

I thought briefly of a time I grazed all the skin off my leg on an icy cross country run. A fall that had given me untouchable status. My sadistic PE teacher had applied neat iodine over all the cuts in front of the hardest lads in my year, digging out embedded gravel as he did so.

As they all watched and winced, I stared into the distance without flinching. It had simply been too cold to feel my legs.

But it couldn’t have been that. I had been running downhill in a blizzard. My legs and elbow had taken the full force. I had skidded down the hill on my side like Roy Keane making a career ending tackle.

“No! Sorry!…”

Unless…

The only time I could think of was my world record attempt.

“That must be it!” Said the doc “this looks like an injury that happened well over 20 years ago.”

I can sometimes still feel that notch on the outside of my arm close to the wrist.

So, this fall, and that x-ray were on my mind 6 months ago when I fell – left wrist first again – onto my patio.

Avoiding the busy A&E department in town I ended up making the trek to a small community hospital about 10 miles away. After about 3 hours of waiting, I missed the mobile x-ray person who clocked off the very moment my name was called.

The nurse, and again, my gp a few days later, had a feel of my wrist, both of them jamming their fingers into what I learned was my ‘anatomical snuff box’ to see how I reacted. I told them it didn’t really hurt that much relative to the rest of my wrist.

The doctor I currently work with when I see the uni students also violated my snuff box with her thumb. This was the other day.

“Are you sure it’s just a sprain?” She asked. ” It really shouldn’t still be giving you grief after 6 months.”

It really does give me grief, though. I cant lie on it. Its very stiff when I wake up and I can’t lift heavy things with my left arm. The pain often feels razor sharp.

“If I was you, I’d ask my gp to book an x-ray.” She explained that while soft tissue damage can be more painful than breaks it really shouldn’t still be painful after 6 months.

So, I’ve seen my gp to sort this. We found the round bit at the end of my left radius to be particularly sore. I don’t honestly know what good it’ll do if they do find a break. I can’t think how any intervention would fix it, but I guess it answers a question and will inform any physiotherapy I now self-refer for.

I guess Mr Knievel will have broken every single bone in his body at some point, but I wonder if he ever had the balls to attempt his daredevilry on a Raleigh Tomahawk.

I reckon it’s a safe bet that he didn’t, the big wuss.

……….

Challenge: a prize for the first person who can correctly identify the coordinates of the Tomahawk crash-zone.

I occasionally take videos of my legs doing weird things to show the medical students I help with.

A common request I hear is for clips showing my calf fasciculations.

They pretty much do this all the time but not on request, of course, so I took the following while resting in the sun.

As a bonus, my right leg threw in a good, strong flexor spasm on 25 seconds.

Two lower limb MS symptoms for the price of one. Enjoy!…

Hopefully, this also illustrates what a misery flexor spasms are. Imagine trying to sleep with this going on every 20 seconds.

Hooray! Hooray! …it’s a MonSter holiday! Da da dee dee dah, da da dee dee dah… MonSter holiday! Hey!

I woke up bleary eyed and blinky. The familiar tune was being piped through the crackly PA system.

“Oh, flippin’ heck… No!”

I realised where I was.

I was on a MonSter Airways flight to the Crap Gap.

I tried to check by having a look round, but I was crammed in so tightly it was hard to turn. I knew I was on the usual beaten-up old DC-10 that was as old as me. There was minimal legroom, and I knew this was the very worst kind of long-haul flight.

My knees were pressing uncomfortably against the seat in front and the console in the back of it seemed to be old and blurry. The screen was a bit faded and shifted in and out of a double image.

I had a bit of a dead leg situation going on and my flexor spasms were really giving me grief. The guy in front was obviously uncomfortable as well, and probably fed up with my turbulent legs, because he kept pressing back on his seat and squeezing them even more.

The lack of air con, the claustrophobic seats and the bumpy ride as we approached the destination was making me feel a bit dizzy.

Maybe if I eat something…

I tried to open the packet with the plastic knife and fork in, but it was difficult. It seemed to be made with the reinforced indestructible material that gives way only if you pull really hard. My hands were clumsy.

“Oh!… Bloody thing!”

The packet gave way, and the disposable cutlery flew into the foot well irretrievably.

I tried to reach, but either I couldn’t feel them, or they were just beyond my wiggling fingertips. I decided to have the bottle of fruit juice instead, so I twisted the cap off.

BANG!

The pilot touched down with the same regard for comfort as a navy pilot touching down on an aircraft carrier in stormy seas. The thin indeterminate juice I’d just opened sploshed all over me.

We taxied jerkily to the terminal and stopped with a lurch. The cockpit door swung open, and there he was…

The MonSter was leaning in the doorway with what I could see was a crazed look from behind a pair of filthy looking aviator sunglasses. He looked like he hadn’t slept in days. He was wearing what looked like an uncomfortably undersized pilot’s uniform that his hair was poking out from in tufts. The shirt and tie weren’t done up all the way, the hat looked wonky, and it generally looked like it could do with a serious dry cleaning… or a serious fumigation. He was grinning his usual deranged grin.

So here I am, trying my best to relax next to the uninviting pool at Crap Gap Hotel. The weather’s nice at least but being out in the sun is wearing me out.

I never know what time zone it is here, but it doesn’t really matter anyway. I’m ready for bed early. I went to see Mark Steel the other night, and even though he was the funniest comedy I’ve seen in ages, I was fighting off the sleep demons a bit in the second half of his show.

I’m getting up at the crack of dawn, and I’m getting some serious rest in for once. I’m not sure it’s doing me any good though as it seems I’m permanently tired. It helps that one of my house panthers, Gatsby, recognises what’s going on and is joining me in bed. He’s taken on the responsibility of keeping my feet warm at night and purring me off to sleep. I’ve given him plenty of fusses as a tip.

I still have jobs to do, and they get done but at my own pace – the washing gets hung out, the dinners get cooked, the lawn gets mowed – but anything physical takes a lot longer to do. I am struggling to stand up for long periods and keeping my balance is tricky. I’m tripping on the stairs and my own legs constantly. I’m also stomping about the house like I’m wearing invisible deep-sea diver’s flippers.

I’m able to go to work as normal, but thanks to the beauty of having flexible working, I’ve been able to build up some hours in advance as part of the holiday prep. I can imagine there will be one or two early signoffs this week.

I think what I’m saying is – think of me as being away, like I’m in another place, or another time zone. I’m not 100 percent all there at the moment.

I’ll be back by the end of the week though. I can guarantee that.

At the end of this ‘holiday’ there’s a party that I really enjoy. It involves a few of us sitting around in the Ocrevus Bar eating cake, drinking tea and taking some hard drugs. We chat about music, films and what we’re reading or watching on TV.

We compare notes on the MonSters we share our lives with as well, and it provides a big boost for my mental health, so it has that in common with regular holidays at any rate.

After that I’ll be home and getting over the jet lag for a couple of days before normal service resumes for another six months. Until I wake up again on my next flight to the Crap Gap Hotel anyway.

Bloody MonSter…

My legs were killing me.

My calves were being properly wrung out.

This had been building up for a few days and it was getting intense.

I had to stop everything I was doing. The pain was all-consuming. I could barely think straight. All I could do was turn the air blue.

I’ve maybe had a bit of a relapse since Christmas and New Year. I’ll talk about that in another post probably, but if it is a relapse, it seems to be one where some of your nastiest symptoms disappear or lose their intensity, and gentler ones take their place. I’ll trade all night leg spasms for low-level evening tinnitus any day.

So, up to now, I’d been feeling quite positive about it. It would be likely to mean that I was still living with the relapsing remitting variety of MS (RRMS) and not the secondary progressive form (SPMS).

Everyone who lives with RRMS for a long time (20 years in my case) must wonder if or when their disease will progress or will have progressed. It’s not an obvious demarcation. Most RRMSers expect to step over an invisible line into a new disease course at some point, but that could be at some point in the unknowable past as much as it could be in the unpredictable future.

You might be a few years into the progressive form before anyone realises… and by “anyone,” I mean your neurologist, who you may no longer see every year. You’re at the mercy of their interpretations as well. One neuro’s opinion could be very different from another’s.

Personally, I sometimes think I could be 10 or even 15 years into SPMS. I can’t remember any big obvious relapse since diagnosis day, and a lot of my symptoms have been around since then. There’s also been obvious progression in that time typical of an SPMS disease course.¹

There’s not a lot of big-gun, super effective treatments for SPMS in terms of disease modifying drugs (DMDs)², whereas there’s pretty much a menu of options for relapsing remitters like me

So, I just assumed that this was the MonSter wishing me a surprise ‘Happy New Year’ by gnawing and chewing at my legs.

To say it was uncomfortable doesn’t do him justice. It felt like my shin bones were being stretched and twisted. It seemed like they wanted to detach themselves from their fleshy confines and run the heck away.

The pain was medieval in its cruelty, and I wondered how I could possibly be tolerating it.

My phone buzz-buzzed… It was one of a series of daily reminders I have set myself for taking medication.

I normally ignore what these messages say because I know what to take and when to take them and I’ve normally done the business by the time they remind me.

I glanced at this one to distract myself.

It said “statins.”

Let’s rewind a bit…

Last Autumn, I went for one of my regular health check-ups at my GP surgery. This is the usual well-man clinic thing where they take loads of blood samples.

They also insist on taking your blood pressure with the cuff against the skin of your arm for accuracy, and then they go on to see how heavy you are in your clothes, shoes, and winter coat.

“Can I at least kick my shoes off?” I’d asked as I stepped onto the scales.

“No!” said the nurse snippily as she trundled her chair round to frown at the readout.

A couple of weeks later, I returned for the results.

It appeared, according to the tests, that my blood glucose levels were high, and approaching type 2 diabetes levels.

Something about having high glucose levels made me feel guilty, like I’d been caught eating all the Halloween sweets.

I tried to play it off against the fact that I’d genuinely forgotten to fast for the blood tests, and I’d eaten breakfast that morning. I was told that didn’t matter, though, and there was no hiding from the brutal truth.

The nurse fixed me with a momentary stare… Apparently, the glucose numbers indicated the overall levels for the previous 3 months or so, and just one day wouldn’t influence the results at all.

It was clear that there would be no pulling the wool over her eyes, that’s for sure.

I felt bad about an all too brief dalliance I’d enjoyed with a bar of Dairy Milk a month or two previously. It was now waving farewell in my memory, dabbing at its chocolatey eyes with a hanky.

I was guilty as charged.

I was asked about how much fruit I ate as she swivelled to look at her screen again.

To be fair to her, I do eat a fair amount of fruit – a banana a day, and maybe something else like an apple or a peach… Maybe some berries as well.

“It’s healthy right?

“An apple a day keeps the doctor away, yeah?

“Five a day…?”

“No… you’re pre-diabetic according to this. Your dad had type 2 diabetes. You’re heading the same way. Cut down on the sweet stuff…”

She swivelled back from her computer screen to face me.

“You don’t do enough exercise to justify more than one piece of fruit a day.

She must have seen my doleful face…

“Look. Don’t feel bad about it… I was prediabetic myself according to my test results. I just made a few little changes to my lifestyle; I adopted a new diet, I joined the gym, I go for a jog every other day, and I’ve just done my first 10k.” she held my gaze for a second more before her smile crumbled, and she put her glasses back on to look at her screen again.

I expect she’ll turn up next on one of those SAS shows on Channel 4 carrying a muscly bloke over a mountain while another muscly bloke in a black sweater and beard screams at how pathetic she is.

There’s nothing worse than someone who has made a healthy lifestyle change and is getting all evangelical about it. Giving up sweet things can make you bitter, it seemed.

I looked ruefully at my walking stick, then I glanced up at the MonSter. He was sitting on the seat facing me, dangling his feet, his shaggy hair gleefully standing on end with its oily rainbow sheen. He was grinning his ugly, lopsided, snaggle-toothed grin…

…He was enjoying this.

“Do you smoke?”

“No. I gave up years ago.”

“When, ‘years ago?’”

I puffed out my chest proudly: “1999… New Year’s D…”

“Nineteen-ninety… Nine.” She said as she tappity-tapped at her keyboard.

“Do you drink alcohol?” she asked.

“Not really, no.”

“How much is ‘not really?'”

I really don’t drink alcohol. Not since my early twenties when I was trying to escape everything. Maybe two small cans of sweet fruity flavoured cider once a week.

“OK, we’ll take your bloods again after Christmas, and in the meantime try and cut down on sweet unhealthy stuff like fruit, yes?”

…or mince pies, or my mother in law’s Christmas cake…

“OK…”

So, of course, I ignored her.

I felt bad though, and it really played on my mind a lot over the festive period.

It seemed I was heading on a one-way trip to Diabetesville, and I felt suitably glum about it.

One thing I have started, and I’m really enjoying it, is I’ve started seeing a personal trainer. I wanted some leg strength, core strength, and some muscles in my arms because I’ve always been a bit weedy there. I have a bit of a weights routine going on most days and the occasional 15 minutes on my exercise bike.

So, let’s fast-forward again to the moment I glanced at my phone’s medication reminder.

A lightbulb was flickering into life above my head.

I was already on my third set of statins. GP surgeries tend to start you on Atorvastatin, which understandably, is the cheapest. If you don’t get on with that, mine switch you to Simvasatin. Then if Simvastatin causes you problems, they move you to Rosuvastatin. There were another two levels of posh statins above that.

I had ditched the first two statins already and was taking the lowest dose possible of Rosuvastatin.

Why had I stopped taking them?

I remembered with a wince… unbearable muscle pain in my legs. Specifically, my calves.

The NHS website told me the various side effects of statins, and apparently, muscle pain in your legs is a common one.

I had a quick Google around (I studied health informatics to Masters degree level before you mention me googling the web). I found a paper on GOV.UK, reporting that statins may also raise glucose levels and increase the risk of New Onset Diabetes (NOD) among high-risk individuals, such as those with a diabetic parent.

One or two other trustworthy websites seemed to back that up. Apparently, the risk of ending up in the land of NOD for the general statin-taking population is far outweighed by the benefits of the drugs themselves. It’s not common, but it happens.

I decided that I couldn’t put up with this level of torture anymore. I decided to end my statin use, at least for now, and monitor things going forward. So far, my legs haven’t repeated their torture rack moment.

I know I’m not a health professional, but I do get monitored often and I have enough confidence, and assertiveness, I like to think, to know enough about what’s going on in my own body and if anything needs to be done about it.

Since Christmas, I’d also stopped taking my blood pressure pills due to swollen ankles and what turned out to be the healthy heart scan I’d insisted on having at the hospital.

My blood pressure and pulse rate have been fine ever since and a different GP to my regular doom-and-gloom one had OKed me coming off them so long as I kept an eye on things.

In fact, I’ve been on a bit of a mission over the last few years to reduce the numbers of medications I’m on.

I wasn’t too worried about changing my food because, in all honesty I don’t often eat junk, and I’m currently bringing my weight down anyway on a fasting diet.

I haven’t eaten red meat (or poultry) since the 1980s. I eat nuts every day and other things with healthy cholesterol, too. I eat wholewheat pasta, and I use honey and wholegrain seeded flour if I make bread instead of refined sugar and white flour. I don’t use salt generally. I drink a lot of water. I eat oily fish often, and yeah! I bloomin’ well enjoyed bloomin’ Christmas.³

If the bloomin’ Quality Streets were doing the  bloomin’ rounds, I’d have a bloomin’ Quality Street (unless it was one of the orangey ones, in which case, no thanks).

I thought I’d let my return blood tests do the talking with their results…

BRING IT ON!

I went for the test the other day…

“A sharp scratch…”

I haven’t had the follow-up meeting yet, that’s in a couple of weeks, but the results have arrived on my NHS app.

Cholesterol levels: Normal. No further action.

Triglycerides: Normal. No further action.

Glucose levels…

Yeah?… Go on then…

Normal. No further action.

Everything – and I mean EVERYTHING, from Calcium levels to liver function to full blood count numbers were all well within their normal, healthy ranges.

I may not look like it or feel like it, but it seems that the stats are telling me loud and clear that I’m as normal as I can normally be.

As fit as a flipping fiddle, apparently!

…for a slightly overweight 50-something MonSter keeper, anyway.

Hurrah!

Let’s hope the practice nurse sees it the same way.

I suspect they’ll try and get me to return to the statins again, but I’ll try other methods of keeping my cardiovascular disease risk at the level it is now (low).

I get measured and checked often enough.

---

¹ walking problems and balance, especially

² just Siponimod (Mayzent) at the time of writing.

³ apols to Raymond Briggs

The behaviour of a health professional in this post may have been exaggerated very slightly for comic effect but genuinely captures the gist and direction of the conversation. My GP’s reaction to me never having covid in a previous post was exactly as described.

“I tend to shake infections such as colds within 24 hours. I’ll suffer for an evening, but it’ll be gone by the morning…”

I said this to a group of final year medical students recently, well aware that I was tempting Fate. It was in answer to a question about being on an immunosuppressant.

So I thought I’d camp out on Fate’s front lawn and learn the bagpipes in the middle of the night.

Bloomin’ Fate…

A couple of days later, I attended a university offer holder day in Sheffield with my 17-year-old, along with about 50 other potential students and their accompanying family members.

The day after that, I attended a birthday party in Manchester for one of the youngest members of the family. So I spent an afternoon with lots of Moanas and a couple of Spidermen as well as lots of family I haven’t seen for ages.

The open day was great. I love poking around on university open days, picking up free goodies, and noseying around the departments and students unions.

One thing I did pick up, independent of the open day, was a Sheffield alumnus library card.

This means I can do some undercover library research or pass on my details for any students in the family should they need to search online databases that they otherwise can’t get access to.

They won’t need to, of course, and I don’t expect them to. The real reason I have it, if I’m being honest, is to have a memento of my year as a master’s student.

It’s nice to have a tangible connection to my past, and also, after two decades, I probably need to feel I got something out of it, even if it is a plastic card with my tired looking face and a barcode on it.

It’s a reminder that I can achieve things if I set my mind to them. When you have a disability like MS, it feels like the world is stacked against you. Everything seems so uphill and… well, exhausting frankly.

I did a masters to enhance my job prospects, and sometimes I feel jaded about that, so I’m hoping that even at a superficial level, it might rewind the clock a bit.

Everyone needs to know they’re providing and attaining some value in life. It doesn’t always seem like that with some people, but surely that’s what life is about. It’s finding a reason and a meaning behind existence.

I’ve been coasting along for a few years now. The kids are practically grown up and although I’m quite a tolerant person (stop sniggering), It does feel like I’ve outgrown some elements of my life. I’m buckling at the knees a bit, like a camel carrying a large bag of straw.

There’s one area in my life that I need to transform radically before it completely does my head in, and now might be the ideal time to do it before all manner of stuff hits the fan.

Hmm… I think I’ll leave it there. This is probably going to have to be the subject of another blog post in a couple of years. This requires some deep thought.

I have a survival plan, shall we say, but like a desert island strandee with a makeshift raft, some bravery will need to be called upon when I push it away from the shore.

Maybe this is the mid-life crisis I thought I’d avoided. Or maybe I’m at a stage in life where reevaluating everything is inevitable.

On a practical level, though, the library card means I can access the groovy new Information Commons (library) coffee bar overlooking the Henderson’s Relish factory before and after hospital appointments.

Other highlights of the day included sniffing out the depleted geology section on a mezzanine level in the old Western Bank library. It was populated with a meagre showing of old dust-gathering textbooks that were so old that they pre-dated the discovery and acceptance of plate tectonics. I remember referencing one of these when I was a student in Manchester, and being told by my personal tutor that it was too out of date to be a credible reference. And that was circa 1990!

So, I knew that these books should have been pulped about 50 years ago, but I quite liked the fact that they were still there. For me, they added to the 50s/60s Kubrickian ambience of the building: a moment in time encapsulated in a bookcase.

They’re never going to be accessed again, of course. I imagine I could check in on them again when I reach my 70s. I wonder what collection management systems they may have and whether they pick up old unpopular textbooks.

Sheffield’s Geology Department had closed and been absorbed into other science departments and universities in the late 1980s. Nationally, there was a big shake-up of university Earth Science departments in the year before I began my studies at Manchester, so some had extra funding, and others were shut down.

Over in Manchester, the closure had gifted me lectures from Professor Grenville Turner who had jumped ship over the Pennines. He had worked with NASA on lunar samples as part of the Apollo program, as had my mineralogy lecturer, Dr Pam Champness. I remember studying meteorite samples under a reflecting microscope when I was a student, some of them very possibly collected from the lunar surface itself, and that will no doubt be thanks to this duo.

Also, while in Sheffield, my prospective student and I also went for a play on the paternoster lift in the Arts Tower.

A colossal ammonite in the foyer with the amusing but appropriate Latin name, Titanites giganteus caught my eye (see pic).

Why it’s in the foyer of the Arts Tower is anyone’s guess. I imagine that it had been loaned for an art project at some point and never returned to the equally extinct Earth Scientists.

I remember it being there 20 years ago – reduced to a prehistoric doorstop.

I can imagine it’ll end up in a skip at some point, which would be a titanites giganteus shame, of course.

Anyway, I’d had a couple of very tiring days in close contact with a varied bunch of people of different ages from all over the country:  students, sixth formers, and pre-schoolers.

Within less than a week, I would barely be able to stand up.

What started as a bad head cold turned into whole body weakness and the inability to even turn over in bed or pick myself up off the floor after I unsuccessfully attempted that very manoeuvre.

Mrs Dave phoned the GP who asked me if I’d ever had Covid.

“No…” I replied, monosyllabically.

Judging by the verbal explosion at the other end of the phone, I think I must be an anomaly.

“WHAT?!? You’ve NEVER had Covid?” and then repeated an octave higher in case the local bat population hadn’t heard… “YOU’VE NEVER HAD COVID!?!”

“No…”

I had been effectively quarantined during the lockdown months.

“OK, well, it could be flu, but I’ll order you a Covid test that Mrs Dave can pick up from the pharmacy, and I’ll prescribe you flu antivirals in case the test comes up negative. Have you had the flu jab?”

“Yes.”

“…and your Covid booster?”

“Yes.”

“OK, it could be a strain of flu that wasn’t covered by the jab.”

Anyway, long story short – the Covid test came up negative.… and flu it was.

Coccooned in a duvet in the mausoleum of the spare bedroom, I watched the daily cycle of the spring sunlight shining and fading as it leaked through cracks in the curtains. I also heard the local primary kids making their bubbly way to school and then back again at the end of the afternoon.

Oh, my word… I’m back at work now, but I’ve been in my pjs for a fortnight. I did change into my least heavyweight pair of jeans to take the bins out when I was convalescing, but they were still so heavy (as were the bins) that I needed to take a nap afterwards.

I don’t think I’ve had proper flu before, but I did think I was on my last legs at one point. It seemed to take so long to leave my system that I started to wonder if I’d ever come out of it unscathed.

So, I’ve spent nearly a fortnight of sleeping, watching stuff on YouTube, sleeping some more, fussing the house panthers, and listening to Steely Dan – my aural comfort blanket.

(Steely Dan take me right back to my 1970s childhood. I grew up with an older brother who was, and still is, a big Dan fan).

All I needed was my mum to bring me a big glass bottle of Lucozade in orange crinkly plastic wrapping. The 1970s childhood cureall.

I hadn’t felt like eating for three whole days. Part of that, of course, might be down to the bad taste left by watching the Trump and JD Vance sh*tshow unfolding online.

Of course, as any MSer might expect. The flu became a playground for the MonSter, and he decided that a bit of optic neuritis should also be in the mix, along with a lot of numbness and weakness below the knees, and fatigue which could either be MS or flu, or both.

Lawd alone knows what Covid would do to me.

Ever the professional, I was hoping the optic neuritis might last until my next teaching session so that when I’m asked if I have any pain behind the eye, I could answer in the affirmative.

After about a week of feeling at Death’s door, I declared to Mrs Dave that I was finally fit for work. I then rapidly changed my mind the following morning, and I spent another week on my death bed with at least one of the panthers curled up, keeping watch and keeping my feet warm.

I’ve mentioned this before, but it’s lovely how my cats get clingy when I’m not well.

Apart from feeling wiped out in the evenings and with a persistent dry cough that probably comes from being an Ocrelizumab patient, I’m mostly over it…

I think.

I can wear trousers again anyway without getting exhausted.

So, now I’m back on my feet, and my boss has told me to mark myself as “do not disturb” on all the systems so I can gently ease myself back in. I’m not doing a phased return to work because I’m using up loads of leave anyway, with it being the end of the leave year.

This weekend I’m in Newcastle to celebrate another birthday, which is going to make me feel very old, and immediately following that I’m seeing another batch of students for their neurology training.

I could be running literally before I can walk here (it took me about 45 minutes to walk half a mile last night), but at least I’ve managed to avoid extinction; at least I’m not still collapsed face down on the bedroom floor…

At least I still haven’t had Covid. Ha ha! Up yours! Take that, Fate!

In many ways, being stuck in bed or soaking up the sun in a chair on my south facing deck for a fortnight gave me a feeling of rebirth. I’ve survived the ordeal, and I can reinvent myself and get involved with new situations such as I have recently with my volunteering.

I’ve avoided my own personal extinction, and while I do feel a bit like I’ve been procrastinating with life, I think this is a wake-up call to find new roles and connections.

So long as I don’t end up as a doorstop myself.

Both my offspring are at crucial points in their lives.

My eldest is about to graduate from university while my youngest is about to fly the nest and start her own journey into higher education.

So, I’ve been the accompanying parent on the open days around the northern Russell Groups. Because we’ve been dragging the MonSter around everywhere with us, I can’t help but assess the establishments in terms of the number of opportunities to sit down and grab a coffee.

If that was how we ranked our preferences, my alma mater, Manchester, would top the list by miles, but maybe it’s because I already had a nose for where the best hangouts are.

It’s a very strange feeling to reach this point. I feel very excited for my two, but I remember being at the same stage in life and it’s bringing up a lot of bad memories.

It is not unreasonable to say that despite the degree, I was defeated, depressed, and directionless in my early 20s. In fact, I remember feeling a bit of a failure.

“Why don’t you think about becoming a mental health nurse?” I remember my hospital chaplain dad suggesting, “I have a feeling you’d be great at that.”

I reckon Dad’s Myers Briggs personality type wasn’t far off mine. If you’re into these things, I tend to come out as INFP, so apparently I’m a sensitive mediator and a creative deep thinker, governed by a strong set of ideals.

That sounds about right, I internalise and ruminate a lot, but I’m not sure how much I hold with putting people in baskets. You’ll probably now tell me that’s a typical response for my personality type.

Apparently, Kurt Cobain, Holden Caulfield and Frodo bloody Baggins were INFP, as was Princess Di, they reckon – Gawd bless ‘er – and they all turned out alright, didn’t they?

Of course, while researching for this blog post, one of the suggested careers I recently found for an INFP is, you guessed it…  a mental health nurse.

So, Dad was probably making a very astute observation. One formed by his professional life and his years of experience at the emotional sharp end of the National Health Service, and just before he took early retirement through stress, as well.

I’m pretty sure I dismissed the suggestion without too much thought.

My final year at university had been a particularly tough one in terms of my state of mind. Life had been a big struggle. Some mental health support was something my subconscious mind was actually screaming out for.

Manchester was a refreshing place to revisit though – all the places I’d hoped had changed on campus, such as the students’ union and the Precinct Centre, had either received a much-needed makeover or had been mercifully flattened along with some dark memories. Even some of the roads had become pedestrianised, and there seemed to be a much brighter, happier vibe about the place despite the torrential Mancunian weather.

I was allowed an hour of nostalgia, so I was very happy to see that my old department had remained relatively untouched.

I’d forgotten what a wonderfully cosy building it occupied – I wouldn’t be surprised if it was listed with its 1960s feel – all red brick and weathered copper, and with its frontage adorned by a wonderful golden sculpture like a rising sun or a medal for first place.

The area in front of it had been widened and opened up with the demolition of the brutalist and seemingly Mordor-inspired maths tower. It was apparently modelled on the shape of a slide rule (how quaint!), but to me it was always more Barad Dûr.

The maths building had always seemed to have had a light on in one of the higher windows when I stumbled past on the way back from a late night. It was as if Sauron himself was staying up late, stuck on a tricky sum.

Its absence increased the sense of space, light and flow around the campus.

I was happy to be reminded of my steep and compact lecture theatre, the Earth mural in the undergraduate lounge, and the carboniferous coal swamp mural in the palaeontology lab.

The only changes were for the better – fire doors, and a wheelchair friendly ramp, and rather excitingly… get this… a gorgosaurus skeleton in one of the foyers.

It seemed the undergraduate Earth Science programme had changed massively for the better as well. Away from the focus on petroleum geochemistry of my day (preparing us all for life on the oil rigs) and while maintaining the traditional pure geology elements, the focus seemed to slant more towards environmentally applied subjects.

What topped it all was a second-year undergraduate in a Stiff Little Fingers T shirt who entered our orbit and attached herself to us after I had confirmed my geology graduate status. I had pointed excitedly at a slab of rock in the labs with a criss cross pattern and asked, “is that Thalassinoides?”

“Erm… I don’t know… let me have a look… erm… yes, I think it is.”

Most people would know a dinosaur if they saw one, one or two might recognise a trilobite or ammonite, fewer that one in a million could point out a graptolite I reckon, but I’m 100% certain I’m in a microscopically small minority of people, even among geologists, who would know the name of a fossil burrow system. Thank you Dr Pollard.

We let her show us around.

This was great because – like me – she hated the geochemistry and the igneous and metamorphic petrology side of things and preferred sedimentology, palaeontology, and palaeobiology. I had been gripped by fossil lagerstätten and trace fossils while a student, so we both geeked out about Burgess Shale fauna and ‘Georgie’ the Gorgosaur’s noticeable bone tumour.

Looking around the old department library, I was also met by a couple of postgrads who indulged me like an old war hero returning to the scene of his greatest battles.

“When did you graduate? 30 years ago? Wow!”

Longer than they’d been alive… back in the Cretaceous, actually.

I noticed one of the PhD students who had accompanied us on field trips in the early 90s now had his own office and was a senior lecturer. I realised at this point that I was a bit of a dinosaur myself.

“Yes …a long time ago.”

I felt completely at home, but simultaneously very sad that I wasn’t starting all over again. It was a strange mix of feeling very excited for my 17-year-old, but with a bit of a lump forming in my throat as well.

I’m retrospectively gutted that I ended my undergraduate life in a very bad place. It’s something I’ve tried to forget over the years but is now something I can start to slowly and tentatively unwrap.

There’s no other way to put it, but I was crippled by anxiety at the time, and this manifested as bad panic attacks and an unwillingness to even contemplate outdoor life and crowds of people.

I won’t go into what caused my distress because you really don’t want to know, and equally, I don’t want my mum to turn in her grave. Let’s just say a number of things blew up or imploded at the same time.

Two wonderfully helpful things also happened, though, enabling me to bundle my balrog of bad mental health into a lead-lined box and throw it down a deep, dark mineshaft.

One was that I shared a house with a clinical psychologist researching his Ph.D. who instantly knew what was going on. He described and explained everything I was experiencing in forensic detail, meaning that I no longer thought I was ‘going mad’.

The other was that my intrinsic life-support system kicked in, and it knew that I needed to get far away from everything, and thanks to help from a couple of my best friends, I got the hell out.

I escaped to the more off-beat, wild, and (at the time) unfashionable corners of the East End of London.

I fell into a lovely house-share. The house had a cat; the local pub a few doors down, did lock-ins every night; my communist hippy landlord collective seemed pretty laissez faire and they charged rent levels not seen since the early 1980s. Also, Northern Exposure was on the telly once a week, and most of the house came together for that like a big stupid family.

Plus… I was in London! Yeah! Woo!

I could disappear but I could also find myself.

I could explore the coolest, most exciting city in the Western hemisphere while I still had age on my side and the energy to do so.

Everything was good.

After seeing a notice in my local Job Centre, I ended up working for my local council, which eventually led to a job visiting former tenants of temporary accommodation to sort out their housing benefit arrears.

These were people who had gone a bit further than me. They’d come from far tougher backgrounds, lived chaotic lives, and hit rock bottom before bouncing back.

Some had admittedly bounced sideways rather than upwards and had flown headlong into hard drugs, crime, or severe mental illness. I’d say there were also some who I still swear didn’t have very long to live. A heroin addict who has gone past the point of no return is unmistakable, as is the sight and smell of the space they occupy.

There were also obvious ‘Care in the Community’ cases who looked like they were struggling to cope and had seemingly been left far behind by society.

I visited a lot of very vulnerable people in very tough situations; I also visited a lot of very tough people in very tough situations.

By and large, though, it seemed that our clients had amazing resilience on the whole. They were sorting themselves out and doing a fine job of rebuilding their lives.

Importantly, I felt that I could now detect the difference between the flagrant time-wasters, stoners, and attention seekers at one end, and those doing their best to conceal bigger issues at the other.

Looking back on it I’d say that my own experiences with poor mental health probably made me a good person to do the visits. I’d empathise as much as I could and accept the detritus of life – even the months old excrement crushed into the carpet and the poorly concealed drug paraphernalia.

I had toughened up very quickly, and I had built a resilience while watching other people doing the same. I’d come a long way, and it seemed I was learning how to cope with life’s knocks.

My flight to the capital was one of those marvellous periods of transformation that can happen in life. One that gives you the extra push; that extra spring in your heels. It’s almost tangible. You can feel it coursing through your veins.

It helped to work with some great characters. I had positive, cheery colleagues from all over the world in both my team and the various departments I liaised with. After particularly challenging encounters, it would be good to decompress with someone else afterwards in the safe space of a coffee shop or stuck in traffic on the high street.

Back behind my computer screen in the office, I would be taught the Urdu, the Hindi, and the Gudjurati for accepting a cup of tea. 

On my non-client days, I’d look forward to my regular visits with the lovely staff in the temporary accommodation unit, and I’d wave across the office floor to familiar friendly faces when I reached the busy benefits building at the other end of the borough.

Traversing the borough on foot every day, I’d go out into the fresh air in all weathers, across parks, through street markets and along graffiti framed canal towpaths. I’d listen to a soundtrack of Aphex Twin and Autechre on my minidisc Walkman.

In my quest to free forgotten files from full and overstuffed filing cabinets in the dusty basements of different council departments, I must’ve walked hundreds of miles in the name of my employer.

As a learning experience, I value my time working there as much as any qualification I’ve ever earned. That doesn’t make me a University of Life nutcase, by the way – it’s just a time I think of as another string to my bow of knowledge.

I’m sure I spent great swathes of time bored out of my mind too, but the rose-tinted specs don’t need to tell me that this era was one of those pivotal times of life. One that ended with me meeting Mrs Dave and moving back north to go back to university – Sheffield, this time – to do a Master’s degree.

Not long after I completed and exhaustedly handed in my dissertation, I started falling apart again but this time physically, and for no apparent reason. My MS diagnosis arrived a few years later.

These days I volunteer with medical students at my local hospital. I provide a head for them to practice cranial nerve exams. It lets them get hands-on with a living patient for often the first time as fledgling medics. After they’ve interviewed me as a group and successfully come to a diagnosis, I talk to them about what it’s like to be someone living with a MonSter.

I tell them that my initial symptom onset started in earnest after a year of great stress – I’d moved twice; I’d bought a house; I’d got married; I’d finished a master’s degree; I’d started a new job, and I’d become a dad for the first time.

It has happened like that – the times post-London when I’ve been at my worst in terms of my physical health, are the times I’ve been otherwise overloaded by life. Back in the early 1990s it would be my mental health that would take the hit.

I’ve been through the mill with the MonSter over the last twenty years, and I’ve dealt with the darker moments with a mental strength I eventually recognised I had. That’s not to say I don’t let it get me down because it invariably does, and occasionally everything gets too much and my pot will boil over. I’m in a better place to cope these days, that’s all.

I’ve used the MonSter as a force for good whenever I’ve found the opportunity. On a couple of occasions recently, different students have approached me separately after the sessions to share their experience with the various diagnoses they’ve had. The most recent one was from someone still raw from dealing with their own baby MonSter.

This was a bit of a signal for me that I needed to become more involved with supporting others experiencing difficult times, particularly as my own family are at pivotal points in their own lives. The same pivotal points where I fell apart and rebuilt myself, of course.

I’ve recently felt the need to challenge myself at work a bit more, so I’ve completed a couple of training courses from MHFA England in the last few months and I’m now a fully qualified mental health first aider.

The training courses were very interesting, and I threw myself into them like the dream student I like to think I am – not afraid to chip in and good at recognising areas I’m strong in as well as those I could improve.

I’ve also recently been accepted as a peer support buddy for the national charity Shift.MS befriending newly diagnosed MSers. Initial feedback for this has been positive.

It’s good to learn and diversify your outlook at any point in life. I certainly see fellow colleagues my age who are stuck in a rut without realising it. Maybe it’s a product of growing up, going to school, and being employed within an area just a few hundred yards square.

I feel that I’m gently making a few life changes to make things more interesting and become a model citizen – in my own idealistic INFP eyes if no one else’s.

I know there will be more things in life that will kick me off kilter, and you’d hope someone of my years is now able to recognise them when they arise and know what to do about it. The journey here has been far from easy, and I now feel capable of supporting others as they get to grips with the emotional pinball of life.

So maybe there was something in what my dad said after all. I never did end up on the rigs, but, you know I can’t imagine myself doing that anyway. Maybe I could have achieved a slightly higher degree grade in a different head-state and ended up doing a Ph.D. I could now be residing in an office with a dinosaur skeleton at the end of the corridor. Maybe I could also have enjoyed a career as a mental health nurse after all.

Who knows? So long as both me and my loved ones are sorted mentally, that’s all that matters

…

It’s early days, but it seems that my Ocrelizumab infusion days could be coming to an end and potentially replaced by a ’15-minute injection’.

This news seems to have caught the main UK MS charities on the hop as the first I heard about it was about a week ago on the BBC website  and the MS Society doesn’t really have any details as to what it might entail. The MS Trust seems to have a bit more info on the delivery method, saying that it can be administered in a more local setting whatever that means. I currently have to drive or get a train to the big city to get my infusion, so this could be a big game changer for me.

I’m assuming the injection will have the same efficacy as the infusion, and I’m also assuming the infusion is there as an option should I want to carry on with it.

The injection is delivered over 15 minutes into belly fat, apparently, which seems an awfully long time to deliver an injection. So, I’m thinking the 15 minutes includes other procedures such as monitoring blood pressure and a dose of steroids and antihistamines such as you get with the infusion.

But, I wonder, do you still get these, or is the Ocrevus taken neat?

Also, who administers it? I think I’d feel safer having the injection in a hospital setting, wonderful though the nurses at my GP practice are, and preferably from a nurse with some background in treating neurology patients.

I think the thing I’ll miss most if the infusions come to an end for me, is the social aspect of going into hospital and catching up with the same little crowd every 6 months. I know the important things to consider are convenience, time-management, cost, and effectiveness of the medications etc, but the mental health angle is also important.

I’m not a fast-paced career-oriented person, so I like taking a day off, finding my own space, getting a change of scene, and talking to other MSers. Currently, the infusion days are my only opportunity to do that, really, and I come away from them on a bit of a high (which is no doubt at least partially due to the steroids).

I guess I’m not that keen on making big changes, and there will need to be some clarification before making any decisions.

I’m sharing this from Dr B because I think it’s a very good summary and intro to life with a MonSter, and could be useful to signpost people towards when they want to learn the basics of MS.

I follow a couple of neurologists online but this is the first time I’ve shared any of their content (I think). Dr Bieber usually comments on published research papers and he’s quite a fast talker so unless you’re comfortable with statistics he can often leave you standing (I often have to pause and rewind).

He’s worth a follow, though, and this is one of his more accessible videos.

I’ve been living with my MonSter for long enough now, possibly since my teenage years (and maybe even further back if my bad childhood tremor was a precursor) that most of this video resonates like an MRI machine in an earthquake (see the tag cloud at the end of the page).

There’s only one thing to take issue with and that is the reliance the global medical community seem to place on the EDSS scale. This concentrates heavily on mobility as an indicator of MS related disability progression, and there seems to be no equity of progress between the scores.

I have mobility issues myself and just like the example in the video can only walk about a mile in one go when I used to be able to manage several. I’ve been maimed but not that severely ravaged by the MonSter otherwise – nothing I can’t live with, anyway. Having tempted fate by saying that, I do feel I might have crossed the line into secondary progressive territory now.

I’m not 100% sure of my EDSS score, but if we say it’s 5, due to my walking and balance, it would seem I’m halfway to being killed by the f**ker.

There are other scales but I suppose you’d need to be assessed on a number of them to gain a reasonably accurate picture. It’s not Dr B’s fault that it’s the standard, and I’ve never been given my score; it has never been in the letters sent to my GPs, so I’m pretty sure my MS team don’t even consider it in the first place.

Anyway, I think this is a very good overview. Even I learnt a few things. Enjoy!