Warning: Tired travel analogies may continue to be employed in this post.
“I know the C word and the F word. The C word is cor blimey, and the F word is flippin’ ‘eck” – Rat, lead singer of Chesterfield based punk band The Bland on stage at the Take Two club, Attercliffe c.1988
It’s been a funny old year, and when I say ‘funny’, of course I mean ‘funny-peculiar’, and not ‘funny-ha-ha’.
I have to say that medically, the last 12 months have been the hardest of my life. Even harder than the MS diagnosis year, as that became something positive in the end, and the overriding emotion for me at the time was one of relief that I had something that wasn’t going to kill me.
2021 saw a routine MRI scan picking up evidence of an MS relapse which then necessitated a change to my main brain medication, from the relatively low efficacy glatiramer acetate, (Brabio/Copaxone) to the full-on big guns of ocrelizumab (Ocrevus). So, while I no longer need to inject every day, I do have to attend hospital for an infusion-fuelled B cell murdering spree every six months, which is a little bit daunting when there’s a global pandemic raging outside your door.
Then, last September, I tripped and fell, fracturing two vertebrae. It’s six months later now, and I still can’t walk past the place where it happened without a degree of trepidation. It’s as if the psychological pain is as great as the physical pain in terms of what still exists in my system. It took three months before an x-ray confirmed the fractures, so it was three months of worry about what the actual flippety flip might have really happened in my spine. That’s three months of reduced mobility, and three months of feeling like I’d been snapped in half. I now have ongoing pain in my lumbar spine to deal with, and I’m currently controlling it with what is apparently an addictive medicine that some in my team of medics seem keen to wean me off.
Let’s also not forget that the fall triggered a 48 hour coma-like sitting sleep, a loss of 16 pounds in weight, and an inactivity in my bowels so severe the GP suspected cancer.
This cancer scare necessitated the downing of two litres of liquid salt, and a colonoscopy that redefined the word ‘uncomfortable’.
And then I turned 50…
…Wow!
…Happy birthday!
Weirdly, the colonoscopy was a high point (and the birthday was as well, of course). It was a very strange experience but it was nice to see myself from a new angle, so to speak, and it certainly woke those bowels up again. Nowadays, my level of colon traffic is more-or-less back to where it should be.
I guess when you consider a colonoscopy to be the high point of your year, you know you’ve been to some decidedly dark and difficult destinations.
My latest MRI took place the other week for which I’m still awaiting the results. After the hour of magnetic slicing, the radiologist, in a first for me, actually had to help me off the bed and into a wheelchair, pushing me back to the changing room. I’m just unable to lie flat on my back for the zap-time and then do the sit-up-stand-up afterwards.
I’m so exhausted by life at the moment that I still managed to nod off in the alien techno disco that is an MRI scanner.
And then there was the DEXA scan to assess my bone density and the ensuing wait for those results which is where you found me in my last post: languishing in the lounge of Limboland Airport.
Well, the results of the DEXA scan came in, and that’s how I found myself on a flight to Osteoporopolis.
A DEXA scan measures bone density in three places: the hip, the hip neck, and the lumbar spine. The results, after being fed into an equation, that I haven’t fully absorbed yet, are expressed as a ‘T-score’.
If it’s a T score of zero, you’ve hit the bullseye – your skeleton is as dense as it should be for someone of your age, and a T score between +1 and -1 is considered normal. My hip has a T-score of -0.1 so my hip is ‘normal’.
If the T-score is between -1 and -2.5 you have osteopenia. This is the stage before osteoporosis – a warning that your bones are in peril. My hip neck – the bit at the top of my femur that connects it to the ball of the hip joint – has a T score of -1.1. My hip-neck is therefore ‘osteopenic’.
If the T score falls below -2.5, then it’s osteoporosis. It’s an exponential scale and as osteoporosis progresses, the T score can get as low as -4. My lumbar spine has a T score of -2.6, and I now have the second biggest diagnosis of my life.
I have osteoporosis of the spine.
Like MS, it’s chronic and it will never go away as I age, but I can take steps to try and improve those T scores. After the age of 30, your body is still building your skeleton, it’s just destroying it a little bit faster, and it’s that imbalance that I need to work against.
So now I’m dividing my time between my comfortable house in the heart of MS-ville that I’ve made my own over the last 13 years, and my new pad on the outskirts of Osteoporopolis.
Let me tell you, on first impressions, Osteoporopolis is a pretty miserable and lonely place to find yourself, particularly as a fifty-year old bloke. I’m very much in the minority here.
Most of the people here are a lot older than me and it seems that until the population swings from majority-Boomers to majority-GenX, no-one will really use the internet or post anything encouraging to online forums and social media. Maybe I haven’t tried hard enough to look for it, but no-one seems to look after the younger generation like we do with the newly diagnosed in MS-ville. They all seem to keep their heads down and get on with it, and if they do post online, it seems to be for sharing the hardest of hard luck stories.
The pubs here only serve milk and the only celebrities you see in the media seem to be Miriam Margolyes and Gwyneth Paltrow, who I’m sure are both very nice… but… well…
…I suppose I’m still settling in.
I suppose the nature of the Osteo-beast is different to the MonSter. They’re both on downhill rides, only MS is more of a slalom with large jaggedy rocks that you can either avoid, or smash yourself against.
So, if I’m going to collide with stuff, I’d better improve those T-scores.
Well, my GP has booked me in for another hormone-based blood test to confirm if Mr T is going to catch the flight out here as well and cheer me up a bit. I’m wondering (hoping) that I’ll feel a bit more like the old (young) Dave when (if) he does. I’ll be looking forward to his company, but I still have a little bit of time to wait for that.
I’m still taking the calcium and vitamin D supplements. I’m also taking Alendronic Acid once a week (an apparently heart-burning bisphosphonate) to help build some bone strength.
I need to do a thorough re-assessment of my diet: more protein; more calcium; more vitamins D and K. I reckon that’s fish, dark green veggies, and dairy but I’ll see what I can do when I have a proper look.
I’ve applied (through the GP) to restart my ‘health-by-referral’ gym sessions as well, which came to a premature end when I fell flat on my face. I’ve been in touch with the guy at the local authority gym already and we’re going to do a programme based on weights when it’s all up and running again.
I’ve been seeing a musculo-skeletal physio. He’s made sure I’m doing stretches to increase flexibility and strength in my skeleton as it appears a bit stiff and a bit shorter than what it used to be, in no small part due to the last two years of working at home.
I’ve also seen my work’s occupational health department who are sending me supplies to improve my at-desk posture. They’ve also given me details of an in-house counsellor as they recognise my need for one. I enjoy talking to people, anyway, so I might find that beneficial.
Also, I’ve been advised that the best thing I can do is what is often referred to as ‘weight-bearing-exercise’, or, as I like to refer to it: ‘going for a walk’. I’ve re-started my pre-breakfast dawn walking to get some bone-building shockwaves through my skeleton, and build some bone and muscle strength. I never really realised the need to exercise your bones before and it’s great that I can do this by doing an exercise I love at my favourite time of day.
My main hindrances for walking are devising routes that take in rest stops on benches no-further apart than three-quarters of a mile; also, the fact that my calf muscles tend to spasm as I approach the three-mile mark. To combat this I might redeploy my gabapentin booster tablets (the extra dose I sometimes take on top of my night-time dose).
The good thing about walking, of course, particularly when everyone else is still asleep, is the boost you get to the old mental health. Waking up flipping hurts, and it hurts like a motherflipper as I pull myself upright, but after the painkillers, and about half a mile of walking with my headphones in, Osteoporopolis seems a slightly happier place. It’s parks and gardens are well cared for and after taking the fampridine I brought over from MS-ville, I’ve managed to beat my step targets, reaching a glorious 11,000 steps on one day this week. 8,000 of those before 8am.
Over the coming weeks and months Osteoporopolis Central Library is going to see quite a lot of me, as is the calcium counter at the local supermarket. I’m still picking my way through the neighbourhood and a few friends have said they’re going to pop over and see me soon
I’m also waiting for the right time to phone the specialist nurses on the Royal Osteoporosis Society’s helpline. In these early stages they’re going to become very familiar with my inquisitive baritone.
It feels like I have so much to do and so many questions to ask. I’ve almost forgotten what it’s like to be at the early stages of a diagnosis
Perhaps, the question I need to address first; the most ‘me’ question there is, and one that I’ll constantly be refining in my Osteoporosis journey are to do with the positives. Maybe it’s good that it was discovered as early as this. How huch harder would it be to start all the treatments and therapies if I was further down the line? If there’s one thing I’ve learnt from my years in MS-ville, it’s that a positive frame of mind is half the battle.
Dave's Magical Brain 