When I reached the age of thirty, I was helping my father-in-law do some gardening when I bent over to pick up a leaf and I felt a twang somewhere in my lumbar region.
This twang put me completely out-of-action for a week or so afterwards.
My GP had simply smiled and said, “welcome to your thirties!” with the jokey implication that I could start to expect things to fall apart from that point onwards.
Little did either of us know, that five years previously I had already had a precursor of what was to come, with an attack of doublevision that had lasted no more than an afternoon and has been documented only in the occupational health records of the London Borough of Hackney – my employer at the time. This was an episode that has been retrospectively diagnosed as Clinically Isolated Syndrome.
I was already being scoped out by the MonSter.
The next couple of years were medically insignificant, and then these were followed by a period where I was relentlessly battered by undiagnosed or misdiagnosed symptoms. These eventually led to my unwanted squatter moving in permanently. The MS diagnosis was confirmed and delivered to me at the age of 36.
Now I’m officially in my early fifties I’ve found that my body is starting to fall apart all over again.
Last year saw me fracture my spine while falling awkwardly, and thanks mainly to a recent YouTube video by neuro-guru Aaron Boster and a subsequent checking of the MS Trust website, I’ve learnt that osteoporosis is relatively common in people with MS.
Currently, after everyone else in the family has gone to bed, I’ve been watching a few ‘Dave programmes’ on catch-up. These are the sort of programmes that I love, and the rest of the family inexplicably have absolutely no interest in. One of these is Mortimer and Whitehouse Gone Fishing, where close friends, Bob Mortimer and Paul Whitehouse catch fish in various spots round the UK and, among other things, talk about a shared diagnosis of heart disease while they’re at it.
Both Mortimer and Whitehouse have featured heavily in my TV watching since my teenage years. Particularly through Vic and Bob, and the Fast Show. Also, I feel a sort of kinship with Paul Whitehouse because we share that same East End ex-employer. So, when their conversation turns towards their ill health, it’s very real for me and the more I listened to them, the more their description of symptoms started to hit close to home.
I think having a big diagnosis, such as MS, can mean that other illnesses and symptoms can often fly under the radar. I get an MRI scan every year, and my neuro always makes me smile in his write-up for my GP, by saying I have “a very healthy brain and spinal cord… apart from multiple sclerosis.” It lulls you somewhat into having a false sense of security. You rightly feel you’re being watched over and looked after, but it’s easy to forget that there could be conditions and illness lurking beyond the realms of your neurology specialist that won’t necessarily be picked up on.
I’ve had an allotment for quite a while which I’ve recently given up as it was getting ‘too much’, and a few years ago I noticed that I was getting a debilitatingly bad back like a dull ache beneath my shoulder blades while digging, or even when I was just strimming the grass paths or hoeing round my fruit bushes. Sometimes when wheeling my wheelbarrow around I’d have to stop, straighten my back for a few seconds, and then sit down until the ache subsided. It felt like someone, probably the MonSter, was jumping on me for a piggyback, giving me a squeeze round the ribcage as he did so. I’d get the same if I had set about vacuuming the house, very often finishing for the day after only doing one floor, promising to tackle the other floor and staircase another day.
I’d also get this ache while walking if I’d not rested adequately en-route. I’ve been going out for dawn walks for quite a while now, and I’ve always made a point of stopping for a rest every half a mile or so, to the point where I only walk along paths and pavements dotted with benches and perching points.
I remember a couple of years before the Covid lockdown in my pre-stick days, an allotment friend had stopped his van and asked me if I’d like a lift the final few hundred yards to my house as it looked like I was struggling to walk. I was walking back from the station after an MS related appointment in Sheffield and I’d had that ache, and was starting to bend over with the strain of remaining upright. I’d waved him off, with an “I’ll be fine, thanks” before lowering myself gingerly onto a low wall to rest for a few minutes.
I had just assumed it was all the MS. Even my neuro-physio had said I’d perhaps been overdoing it and was probably experiencing neuro-fatigue.
To a certain extent she was probably right, but Paul and Bob had set me thinking…
I like to moan about my MS a bit internally: I do have fatigue and balance problems; I do have leg spasms, and I do have doublevision which has itself improved somewhat over the years. I’m dependent on some serious medications, a walking stick, and a catheter prescription, but if I view everything objectively like my neurologist or nurses do, I must admit that I’ve been fairly stable since my diagnosis with only the occasional minor bump in the road.
Compared to some higher up on my neurology team’s list of priority patients, I’ve been lucky.
So, what about this debilitating ache?
Is it the MonSter?
Is it related to the squished discs in my lumbar region caught by my recent x-rays?
Is it pain caused by the compression fractures in my vertebrae reverberating round my abdominal region like my GP said it would?
Or is it something else entirely?
From my vantage point on my watchtower, keeping my eye on the known inmates, did I miss that ninja-like shadow flitting around the perimeter fence?
My blood pressure has always been a little bit on the high side. Nothing too serious, but once, when I turned up for an Ocrevus infusion, the nurse on duty later told me they’d been on alert, keeping an eye on me as it had initially been ‘through the roof’. Also, my dad had taken early retirement back in the early ‘90s, due to a diagnosis of angina and heart ill health. He had been signed off as medically unfit to work.
So, with the Gone Fishing thoughts swimming around my head, I thought I’d better see the GP.
It’s noticeable how GPs seem to me to be on firmer ground when talking about heart disease than they are about MS and neurological symptoms. I guess it makes up a larger proportion of their caseload and it’s something they can get hands-on with. He agreed that my blood pressure could do with coming down a bit, so he put me on pills for that and he arranged for a blood test.
I agreed to come back in a month to see how things were.
I had a blood pressure monitor already that I’d bought online, so I made a daily reading and happily watched my bp sink to safe levels over the space of only a day or two. I also made a few small changes to my diet that I’d been planning for a while anyway. I cut out coffee, reduced my bread intake, ditching my breakfast toast for porridge with nuts and seeds, and I upped my oily fish and daily fruit.
My follow-up appointment delivered yet another big diagnosis.
It turned out that my blood tests came back fine apart from the monoglycerides which were a tiny bit high.
“It’s nothing to worry about” said my doc, “they’re borderline, but because of your angina I’ll put some statins on a repeat prescription for you.”
“Erm… excuse me? …did you say angina? Are you sure it’s not just muscular? Some sort of muscle fatigue?”
Apparently not. My dad had angina, he pointed out, so there was family history, and my pain had always subsided when I rested, ruling out anything muscular. He also pointed out that I’d said I’d had a recent episode where I’d struggled to catch my breath after watching something that had made me emotional.
Because I’d been experiencing it for at least three years, he was happy to call it ‘stable angina’, but in his eyes it’s angina, nonetheless.
So that’s where I am. My blood pressure seems to be under control (105 over 69 when I measured it this morning with a resting pulse of 61 bpm) and I’m not experiencing the aches under my shoulder blades on exertion currently. I also have an as-yet-unused spray for under my tongue if I get an angina attack, and it’s a call for an ambulance if that doesn’t work.
My pre-dawn walks are taking on a less slippery, less leaf-sludged winter route currently and I managed a full two and a half miles without stopping this morning which is something I haven’t been able to do for a very long time. I’m pleased that I can walk with confidence and at a clip. If anything cut my walk short today, it was spasms in my leg muscles and a little bit of footdrop rather than chest pains. In other words, just the MonSter waking up.
So, I guess this is a welcome to my 50s. It’s a warning shot in many ways, but perhaps most notably it tells me that just because I have one big diagnosis, it doesn’t mean I’m otherwise invincible.
I can also take away the positive thought that had I not been used to talking with medical professionals on a regular basis, and if I hadn’t had things go so dramatically wrong in the past, it may not even have occurred to me to approach my GP in the first place.