Warning: this post contains experience of intense pain and some details of sensitive medical procedures.
Sometimes I think of my MS as a monster. A monster who is always there tugging at my neck, poking me in the back, tripping me up or holding my ankles like a deadweight. As a child of the ‘70s, the picture I have in my head is of Sweetums from the Muppet Show following me around. Except this monster (or MonSter, if you will) is invisible and his footprints can only be seen on an MRI scan.
Other times I think of it as a terror cell, biding its time and plotting quietly in the background. Conspiring to set something off when I least expect it; unbalancing and toppling the status quo.
Well, that unbalancing, and toppling happened some months ago, as I awoke, regular as clockwork, at 3am.
I was taught at school that the early hours of the morning is the time of day the Germans used to launch their blitzkrieg attacks. This is the time of day that our groggy body clocks are least able to mount a fightback or cope with a sudden situation. This is also the time of day that I tend to need a wee, and it’s partly the reason my bladder was Botoxed a few years ago.
Well, that September night, the MS terror cell detonated a bomb in my bladder, so I thought I’d better go to the loo.
I like to think I’m quite adept at creeping quietly to the bathroom in the dark without waking anyone up. I gingerly hold on to windowsills and furniture as I inch along, using my phone screen to dimly illuminate my surroundings.
My internal terrorists must have planned for this, of course, and had consequently set up some invisible tripwires to upset my balance at precisely the moment I would let go of the chest of drawers. As I let go, I swung helplessly to my left and followed the path my body took in much the same way you might steer into a skid in icy weather.
I think my aim was to collide gently with the bedroom wall opposite, keep my feet and find some purchase without knocking any picture frames off the wall. I would do this, I hoped vainly, without disturbing my other half who was still soundly sleeping a sleep Snow White would be proud of.
Unfortunately, my internal terrorists knew that the corner of the bed would be in the path of my trajectory, and I would pivot over the corner and slam to the floor like Goliath being hit on the head with a slingshot stone. This I duly did and face-planted on the floor with my feet in the air and my knees on the bed, snapping my spine back suddenly in an explosion of pain. I raised enough noise in the resulting howl to wake half the neighbourhood.
I remember a few things about the immediate aftermath. I remember being astounded that my wife wasn’t intensely annoyed with me for disturbing her slumber and was instead tenderly stroking my shoulder asking if I was alright. I remember one of my teenage daughters managing to haul themselves out of their bed to find out what was up with Dad. I also remember receiving a call from the British Geological Survey wondering about the recent seismic event that seemed to epicentre on my house. But I also remember lying there in agony, with stars in my vision, really needing that wee and somehow, by some Herculean effort, still managing to make it to the loo. I almost blacked out in intense pain as I fumbled firstly with pyjamas and then with a catheter, my body feeling as if it had been snapped in half.
I took the following days off sick from work as I struggled to come to terms with what had happened. The pain in my back felt dry and boney in a way I hadn’t experienced before, but then also achey like I’d been kicked in an extra testicle from another dimension. A testicle I didn’t know I had.
I had abdominal pain that seemed to suggest I’d been in an argument with a wrecking ball. Every muscle and tendon seemed to have been ripped apart and pushed through a shredder. I felt like a walking bruise.
I found I could lie down free of pain so long as I didn’t move. I could also sit down painlessly, but in the act of going to sit or lie down and, again, in the act of standing up, it would return in a flash and stay for a few minutes with an unimaginable intensity.
In the days that followed, my body took control and seemed to trigger an emergency narcolepsy like a hospital might induce a coma and I slept solidly for the best part of 48 hours while sitting upright in an armchair. I lost just over a stone in weight as well almost overnight.
Strangely, it seemed I still had a full range of movement – I could swivel and I could bend and I could reach. But if I did the stretches my neuro-physio had given me, I would start back at square one and the pain would crash in again afterwards.
As the week progressed, I realised my normally sluggish bowels were even more sluggish than normal, but to an increasingly alarming extent as the days rolled by and turned into weeks.
My GP, after sticking her finger you know where, prescribed me laxatives, painkillers and muscle relaxants. She asked me for a stool sample when the laxatives started working, and then booked me in for a colonoscopy just to check on things and “eliminate possibilities such as colon cancer, or more likely, polyps” she said.
Checking my NHS app, she’d put “suspected cancer” ignoring the more obvious diagnoses of a chronic neurological disease and a body in shock.
If you’ve never had a colonoscopy before, don’t worry about it. It’ll be fine.
In the waiting area’s ante-room I coldly ignored the man, at least ten years my senior, whimpering about “invasive procedures” like he was on Death Row, reminding myself I’d had far worse: ‘You’ve had bladder Botox, Dave, and in the company of medical students, what could be worse than that?’
In actual fact, the worst thing about a colonoscopy is drinking the two litres of what tastes like pure salt the night before. It’s a liquid so toxic, you can feel your stomach contract in shock the moment the solution hits it. If you can picture a stomach sobbing uncontrollably at the unfairness of it all, that’s what it feels like. Then only a matter of a couple of hours later – oh boy! – that two litres reappears like… well… like a dose of salts, I suppose.
At the hospital I was offered either gas-and-air or sedation. I was planning on going to work later that day, so sedation was a definite no-go. I was also advised by someone who had had it, that gas-and-air might make me feel ‘a little bit queasy’, so I passed on that as well. The part of my brain that still thinks like someone in their early 20s reminded me that gas-and-air has always seemed a potentially recreational pursuit as well, and frankly I wasn’t in the mood for it.
‘I’ll tough it out’ I thought ‘it can’t be worse than bladder Botox’.
It’s actually very different to bladder Botox and more akin to an operating theatre experience than the dentist-at-the-wrong-end procedure of anything bladdery. There’s more pushing and pulling involved, the attendant nurses also pump your belly in a similar way to a CPR but lower down, to force the camera round the next bend, and you have to shift position so the consultant can manoeuvre the bendy camera rod, which isn’t easy if you had the eye-wateringly intense back and abdominal pain that I had. On top of this, there’s an overwhelming and disorientating urge to pass a non-existent poo when the end of the camera is anywhere in proximity to the exit region, shall we say?
There were three screens in the dimly lit room, all showing the wonder of my insides as the camera wriggled and forced its way along my large intestine. I had originally thought I’d ignore these screens imagining all sorts of cancerous horrors, but none were to be found so I lay back to watch the show. It was quite pleasing to see how vibrantly pink everything is, with little red veins scampering around the intestinal walls. The bowel is also ridged a bit like the inside of a vacuum cleaner hose and it was between two of those ridges, and close to my appendix that a polyp was found to be hiding. This was removed with a little wire lasso and then patched up with what appeared to be miniature crocodile clips which I was assured were so tiny they’d be inconsequential and probably out of my system by the time my next MRI rolled around. Apart from that and some ulceration due to my recent heavy ibuprofen use I was given a clean bill of health and informed that my bowels will probably sort themselves out as if a reset button had been pressed.
So, after this, the rest of autumn hobbled slowly past. I found that my mobility had markedly deteriorated and walking had become more difficult. The 18,000 steps I’d only just about managed one summer’s day on a trip to London seemed like fantasy, and still does. I was still in pain and my neuro-physio suggested I request an x-ray of my back.
“Are you medical?” asked one of the other GPs at my practice.
“Hmm?” I replied.
“Are you medical? Do you have medical training?”
Oh dear, maybe he wants to give me the lowdown in a brutally honest fashion. The worst-case scenario.
“You’ve just described your pain really clearly. I just wondered if you knew what you were talking about.”
Yeah, I wonder that too sometimes.
I suppose if you’re in a constant dialogue with medical staff, as you might be after 13 years with an MS diagnosis, you should be well used to describing your torment.
An x-ray of my thoracic and lumbar spine was duly organised as requested, and when the day came, I was in and out of hospital in a jiffy, like that dose of salts I’d consumed a couple of months before. The only thing impeding my progress was my usual fumbling about with the back-to-front hospital gown.
I could expect the results in about four to five weeks, I was told. They showed up in a matter of days via the NHS app on my phone:
I had fractured two vertebrae: T12 and L1. Exactly where I’d described to the doctor, at the border of my thoracic and lumbar spine. According to the GP, the abdominal pain is likely to be just an echo, a reverberation of the spinal injury. I also have some narrowing of disc space and some evidence of osteoarthritis, which is apparently nothing to worry about and quite normal for someone who’s been at the mercy of Earth’s gravity for half a century.
The upshot of this is I’m currently on strong painkillers and a pill the size of a horse tablet satisfyingly called, like a military command to my skeleton: ‘Accrete’ – a calcium and vitamin D supplement they give to osteoporosis patients. I’m also awaiting a bone density scan (a DEXA scan) to see if I am indeed suffering from brittle bones.
After a few days, and worried about the apparent side-effects I might experience from the painkillers while driving, I set off to see my neuro-physio.
Halfway there I realised I really was feeling weird. Not drowsy, but definitely a sensation I wasn’t used to or prepared for – and I’m an old hand at experiencing weird sensations. I couldn’t quite put my finger on it, but the realisation came washing over me as I pulled into a space in the hospital car park:
I was completely pain-free.
I suppose you don’t really compute how much you’re used to something until it disappears.
That would be a nice neat and tidy end to this post wouldn’t it? All sunsets and smiles. A bittersweet ending to make you feel glad and tear-up a little, but life is never that simple and neat is it? My painlessness is only temporary when it happens, and the pain always wheedles its way back somehow. It’s at its most acute when I get up out of bed, it aches for most of the day, even after popping both codeine and paracetamol together, and it starts to properly annoy me by the time I’m due my next dose of pain relief.
My GP (the one who ordered the colonoscopy) has prescribed more of the painkillers telling me that the pain might come and go “for a very long time”.
“Hmmm… how long is a very long time?” I wondered out loud.
“Well, not everyone, but some people report pain coming and going for a very long time after an incident of this nature.”
“Yep! That could be the case.”
“OK…” I paused. “The rest of my life?”
I love my GP.
So, it’s a slow process. It’s currently four months after the fall and I can just about manage rolling over, and getting into and out of bed, without wincing in agony.
I was due to see a musculo-skeletal physio soon but covid, and I’m assuming inadequate government funding, have knocked that on the head for a while – all the physios have been seconded to help on the wards.
I have my bone scan in the osteoporosis clinic still to look forward to and I have one more appointment with my neurophysio that hasn’t yet been cancelled.
Also, in among all of this, I saw a consultant in my neurology team to see if I might be eligible for Fampridine. Fampridine is a medication that helps some neurology patients with their walking – stamina, speed and distance. It hasn’t been approved by Nice in England though, so I’d have to fund the treatment myself if I’m one of the lucky 30% of MS patients it works for. I have a rainy-day fund for eventualities like this, so while it’s expensive and unfair that I don’t enjoy the access that other parts of the UK have, it won’t ruin me financially if I want give it a go and I definitely want to give it a go.
I want my mobility back.
To see whether Fampridine works, I first need a level playing field to assess its effectiveness. It’s useless trialling it while my back, and therefore my mobility, is getting better after a fall, because I won’t know what’s causing the improvement – drugs or time. I need to wait until I’m elevated to my normal levels of crappiness before I start, and this means being able to walk my usual daily circuit of a mile and three-quarters with no major issues apart from mild fatigue and a couple of rest-stops on the benches en route.
My legs have been complaining that they’ve been cooped-up for too long, so I trialled it the other day and I can do a mile and a half with some shuffling and wobbliness to start with, but once the paracetamol and codeine kicked in, it seemed OK and while I didn’t do the full distance my neuro-physio has advised baby steps to start, or I could easily overdo it.
I’m not quite at the level playing field yet. I haven’t done the full distance, and I haven’t gone out on consecutive days, but at long last I think there’s a sliver of light at the end of the tunnel. It could be a long slow process though and I need to learn not to be impatient and rush things as that could damage me more in the long term. I was also advised by my GP not to try and tough it out. If I need pain relief I should allow myself to have some pain relief.
Being in pain and stuck in the house, I’m well aware, is making me difficult and grumpy. As the mobility returns I should experience the endorphins I can generate from a daily walk round the neighbourhood again, and that’s best sort of pain relief there is.