An assault on the senses

I’ve looked deep into the eyes of the MonSter. When I did, everything shimmered with radiating rainbow coloured clouds.

Whenever I glance to the left, he wiggles his outstretched claws and warps the atmosphere so that everything I see, I see twice.

When I stroke my hands across his shaggy hide, my fingertips often tingle, picking up a strange alien static, and my legs turn to jelly.

These legs, of course, are the legs that he clings to when I’m out and about, and the legs he gnaws when I’m trying to relax, kicking behind the knee every 23 seconds or so.

He also has a distinct smell when he gets hot and sweaty. If, like me, you’ve ever burnt out a clutch cable on a car struggling with a reverse park on a steep hill, he smells precisely like that. When I used to run, while I was still able, he would find it fun to chase after me slavering, grunting and panting as I tried to escape him. I’d overheat and, in the shower we shared afterwards, squeezing together too close for comfort in the cubicle, I’d smell the scent of his sweat, like burnt rubber wriggling up my nostrils.

Luckily I’m not sure what he tastes like yet, but if it’s anything like he smells, no thanks.

Strangely though, I’ve recently come to realise that I think I might also be able to hear him making a poor attempt to tiptoe around me at night.

For a number of years, if I’ve been especially tired, I’ve had a tiny bit of transient tinnitus that I’ve thought of as the MonSter’s pulse. It’s in my right ear. Try whispering the following as fast as you can: “pad-pad-pad-pad-pad-pad-pad-pad” like an extra superfast heartbeat. That’s what it sounds like.

Someone on Twitter told me what it was. I think it was to do with an oscillating bone in my inner ear or something like that. Like a twitching eyelid, I suppose. Eventually it goes superfast, rises in pitch and hums off into the void. I’ve no idea if it’s MS related or not.

But there’s something else.

I remember someone once telling me about when the composer John Cage was researching silence, leading to his piece, 4’33”. He realised we could never escape our ambient sound because our bodies themselves also generate it. The piece is actually a serious contemplation of our experience of sound. I suppose silence in music is like dark matter in the universe. It’s there, but what is its shape and mass?

As part of Cage’s research he spent a brief stint inside an anechoic chamber – a room that cuts out all background noise. He was probably excited at the prospect of experiencing absolute silence; silence in its purest form; the maddening slow-burning silence of solitary confinement perhaps. Of course, in terms of his immediate surroundings, he did. He must also have expected to hear his heartbeat, his digestion and breathing, his joints cracking and maybe the damp squit of his eyelids blinking. What he wasn’t expecting, though, was the deep rumble of the blood in his veins, and the high pitched hiss he was told was his nervous system.

I’ve been aware of this nervous system hiss since I was a kid as I thought that was what people were referring to when they talked about a ringing in the ears. I think it must be relatively loud for me, so the fact that Cage wasn’t expecting it surprised me (though there could also be over 30 years of gig-going tinnitus in the mix for me as well of course).

What I hear now is that uniform hiss for the most part, but, again when I’m tired, a brief “tschhh!” noise every second or two; a crash like someone tripping over a speaker, or hi-hat, or when you first switch on a garden hose and it spends a few minutes spitting out the air bubbles.

I guess my question is, if it’s the nervous system, am I hearing the MonSter stumbling around in the crashes or is it a sonic experience that everyone else has?

I imagine any demyelination of my auditory nerves could cause a tinnitus-like noise that a night watching Spacemen 3 at the Leadmill back in 1989 could do, or in the same way as demyelination on the optic nerve can cause expanding, shimmering rainbow clouds in my vision.

Whatever it is, sharing your life with a MonSter can be a full-on assault on the senses at times. When he eventually calms down and cuddles up to me in bed at night, wrapping me up in his big strong hairy arms and breathing his hot smelly breath into my neck, I wonder what he’s dreaming of. What plans to cause mischief does he have when he wakes up late, like the moody teenager he is?

It’s something you have to live with and get used to, no matter how unpleasant. He’s decided to attach himself to me for the rest of our lives and, while I can ignore him, or drug him into submission to a certain extent, he is getting bigger and he is getting in the way a lot more.

Also, it’s probably time to get my ears tested.

“C’mon get in the car. Let’s go for a ride somewhere…”

“So, where are you guys from?

“The UK? Do you guys know Totten-Ham?

“See, I follow your soccer and I support Totten-Ham Hotspur. I’m a Hotspur fan.

“Do you know why I support Hotspur?

“Well, I’m a fan of the Dave Clarke 5, and they’re from Totten-Ham, and they support Hotspur.

“Do you know the Dave Clarke 5?”

Guess where I’ve just been to, on my holidays?

Yep, you guessed it.

As a family, we’ve just completed a road trip from San Fransisco to Los Angeles, driving along California Highway 1 for the most part, aka, the ‘Pacific Coast Highway’, aka, my favourite song on my favourite album by my favourite band*. So, this is just a report based on my personal experience as a milk-skinned stick-using pescatarian English bloke with MS in sunny California.

Hopefully there’s a few useful hints and tips if you have MS or if you have a disability, or mobility issues like mine. I don’t use a wheelchair or rollator currently, but there may be things here you will find useful for a trip to the good old US of A if you do.

We stayed in San Fransisco, Monterey, Morro Bay, Santa Barbara, Hollywood, Huntington Beach, and Redondo Beach.

We stopped at various scenic spots en route including Santa Cruz, Carmel by the Sea, Solvang, Malibu, Santa Monica, Long Beach and other little pockets of the wider LA sprawl.

We flew from LHR to SFO with BA on an A380, and with American from LAX back to LHR on a 777.

Please note that this report is based on a trip in the summer of 2022. A lot of places in California were still expecting you to use face masks and have Covid passports. I have also made a number of trips to New York and Florida in previous years when I was a bit more mobile. Some of these tips may apply to the wider USA and some, like the cannabis one, may only be California-specific.

Cars and traffic

A few months before the trip I applied for a temporary disabled parking placard (like a blue badge) from my local government brothers and sisters in Sacramento. I strongly recommend you do this if you’re using a car on your trip. Allow the process to take 3 or 4 months as you’ll need the application to be signed off by your GP or consultant before you send it off, also it allows time for them to send it back to you if you don’t fill it out properly or if (like me) you forget to include stuff. Having said that, we were hiring a car so this is easily the best thing we did.

This rear-view-mirror mounted placard opened-up the world to us. There’s disabled parking everywhere, I’d say more so than in the UK, so this is an absolute must if you hire a car, or are being driven anywhere. The relief of having the priority in a country where the car is king is something that could turn what could be a mediocre and slightly stressful day into one of near bliss. A packed car park at Santa Monica, for instance, had only one space left and it was a disabled space right on the beach.

Also, we basked in the glory of the car park staff at Universal Studios waving us past all the queues of traffic to a spot right at the front gate.

Even on the busiest days, and after battling traffic on the freeways, you could be pretty confident a big beautiful space with your name on it would be waiting for you exactly where you needed it.

Bays and on-street parking are marked with blue paint and cross-hatching. Note that some (but not all) car parks are cheaper or even free if you’re disabled.

Airports and flights

My top airport tip is to get accessibility assistance. A wheelchair will be your chariot as a member of accessibility staff with a death wish will wheel you frighteningly fast through the sea of air-travellers, parting them like Moses on speed. There’s a little bit of self-awareness to overcome if you’re not a wheelchair user, but that disappears as soon as the first barrier is unclipped in front of your nose. It’s such a breeze! Basically, you’re wheeled from the bag check to the actual aircraft, by-passing all the queues at security, though you still have to get up and walk through the scanner, removing belts and dumping stuff in trays like everyone else. It’s just a lot faster and your family/carer can skip the queue too.

At LAX, we were the very first people on the plane being at the front of the queue at priority boarding. The guy at Heathrow even came on to the plane to stow things in the overhead locker for me. We were also the last off, but again, you by-pass the queues at security, so you arrive at the luggage carousel at the same time as everyone else. Simply contact the airports you’re using and in the USA be prepared to tip; in the UK ask your helper if you can give them a good report online (he handed me a feedback card from his shirt pocket after I asked).

Another useful airport tip is to get a sunflower lanyard to show you have a hidden disability. I don’t have one but a friend of mine with ME just used his while travelling in Eastern Europe and said there was even a lounge area for people with chronic fatigue at one of his airports.

On the plane, make sure you get up and stretch at regular intervals. I get violent clonus in both knees if I stand up after sitting for a long time, so I would get up over Greenland while everyone else was fast asleep and hope no-one was watching the guy in the aisle having a standing seizure. Have a walk to the end of the aircraft and back, turbulence, balance issues, and flight crew trolleys permitting, of course.

I have never been asked to explain medications or catheters at luggage drop or security, but as I take a lot of pills, I also take the little leaflets that come in the boxes to justify them if I need to.

Get a hotel near the airport for the last night so you’re not stressed out on the day you leave

Buses and taxis

“Hi, you guys. Are you from the UK? Did you just get the bus? Oh my God, I haven’t used the bus in like twenty years!” Avoid the public buses. They might drive through unsavoury areas unexpectedly. The drivers don’t seem to be checking the tickets in San Fransisco, so our family were treated to a man struggling vainly to keep his trousers covering his arse, and another man staring one of us out while doing a strange dance with an apple as if it was a mystic orb.

There were also people openly taking drugs in one of San Fransisco’s BART station entrances and lying on the floor in our way, so when out-and-about we tended to rely on…

Uber or LYFT: Download the apps if you don’t have them already. One can be pricier than the other, depending on where you are, and if you’re in an out-of-the-way spot (like when we were at Greenwich Observatory in LA) it could be worth using both apps simultaneously as some drivers cancelled our fare at the last minute.

Public Transport in the USA is nowhere near as good as the UK in my experience.

Walking

Pace yourself and rest whenever you can. There are benches, but just like home they’re not everywhere. Luckily Americans seem to have an in-built urge to ease your suffering, so kudos to the staff member at a Brandy Melville in San Fransisco who, seeing that I’d been dragged a number of blocks by a pair of enthusiastic teenagers, cleared part of a window display so I could sit down.

Crossing the road takes a bit of caution. Don’t forget to look left initially for oncoming traffic when crossing the road. Also, cars can turn right on red lights, so even though the lights say no, it’s legal to turn right on a stop sign in the USA and there may be someone turning right as you step off the kerb. Also, watch the kerbs. If you’re in a crowd and not aiming for the relatively narrow drop-kerb at the corner of a junction there can be a bit of a step to get onto the sidewalk that you may not be used to. I didn’t trip but can see how it might happen for someone experiencing heavy legs.

In the UK we have bad areas in towns and cities, but in American cities we found our overall sense of ease could change from block to block. We sat for a nice coffee in a cool hipster-ish coffee shop in San Fransisco’s Mission District with people sitting at street tables and old ladies walking their dogs past the window, but after crossing the road at the end of the block, we found ourselves in the seventh level of hell. If you have a mobility issue, you might be on high alert and worried that you can’t run away if you need to.

Medication and catheters etc

Make sure you order your repeat prescriptions, so you have all your medication for your travel and some you can leave at home ready for your return. See also my tips for airports and luggage earlier.

If you use them, take more catheters than you need, and split them across all your luggage in case some of it goes AWOL. I actually don’t use catheters as much when I’m abroad (I guess I eat and drink less and perspire more), but I take way more than I think I need, and as much as I can fit into my carry-on just in case any go missing. Just think that when you’re using them, you’re actually freeing up space in your case to bring gifts and souvenirs back.

Pack some meds for the flight. Heathrow to San Fransisco is eleven hours. If you use an anti-spasm med like gabapentin, you might need a low dose to counteract sitting still for long periods. Similarly, anti-histamines are a good way to ensure you get some shut-eye.

Cannabis is legal in California. I didn’t use any this time, but I imagine you could do some research and find a good shop with a licensed physician to help you try some for pain-relief if you need to. **Imagine a disclaimer here accepting no responsibility for anything that might happen as a result and that this post doesn’t condone the smoking of weed etc.** Just be aware it’s legal and above-board and no one will bat an eyelid if you enter or exit a cannabis retailer. They often look like chemist shops from the outside, you’ll see the stores everywhere, and you’ll smell it on the breeze wherever you go. Obviously don’t take it out of the country.

Attractions

As previously mentioned, a disability placard in your car will remove a significant chunk of stress from your day.

Most attractions have disabled access. Alcatraz, for instance, has a bus/tractor thing to take you at walking pace from the ferry to the prison for those that don’t need to make a 13 storey climb to the Traz entrance.

Universal Studios and presumably other parks have a queue pass, so if you want to go on a ride but there’s a 50-minute queue, the person overseeing that queue will give you a time to return so that you can just go straight in when you come back. You can spend that time sitting somewhere shady or checking out interesting things nearby.

The rides also have a notice to say whether the ride is suitable or not for someone like you. It’ll say things like ‘this ride is not suitable for people who get motion sickness, or for people with the following conditions…’ and then it’ll list things like heart problems, bouts of dizziness and so on. I found out, on the Harry Potter ride, that I don’t do travelators or moving walkways, with humiliating results.

If you have a disability you may also be able to skip the queue in some attractions. We were ushered into the planetarium at Griffith Observatory in LA, for instance, before everyone else and as I was apparently the only disabled person in to see the show, we had a whole row to ourselves.

A lot of Covid restrictions existed in LA at the time we visited so, before you travel, download your Covid passport to your phone or you could be turned away from some places. Don’t forget a mask as well.

Food

Dining out is very expensive, particularly while the pound is weak against the dollar. If you want to put together a light lunch while on the go, I’d recommend a regular supermarket. In a 7-Eleven the range isn’t as good, but it’s way cheaper and more geared up for breakfasts: coffee, muffins, pastries yoghurts etc

Vegetarian options are thin on the ground. I didn’t find a vegetarian section in the local supermarket. I asked someone behind the counter in a burger place if they did a veggie burger: “Sure!” and when it arrived, it was a bun with some lettuce, some onion, a slice of tomato and some mayo.

On one of our last days, I found a guy on a market selling vegan food, so we ordered 4 boxes for the four of us and he did a deal without us even asking, cutting the price and throwing in an extra box. It was delicious, but I suspected business had been slow for him.

Toilets

Most toilets have a disabled cubicle with a bin in case you need to throw away a used catheter, pad or ostomy bag etc. Be prepared for seemingly able-bodied people using the cubicle as well though. I can’t remember seeing a separate disabled toilet anywhere except at Santa Monica Pier where they were all just a row of cubicles anyway.

Most toilets have hands-free taps and hands-free paper towel dispensers.

Accommodation

You will be extremely unlucky if you don’t have air con but…

Does it have stairs or a lift?

Does it have a safe in the room?

Does it have an ice machine?

Does it have a coffee machine, and does that coffee come fully caffeinated?

Is your room overlooking a busy street with sirens going past in the middle of the night?

Just keep in mind what I said earlier about the overall vibe of a place changing suddenly from block to block in San Fransisco and LA. Ask at the front desk about dodgy areas. When I asked this question to the guy on the front desk at the Union Square Hilton in San Fransisco, he just said “When you go out the main door, don’t turn left.”

In LA, our block seemed OK, but over the road was a big encampment of rough sleepers, and the next block along was being paced by sex workers.

Americans

For the most part, I love ‘em.

If they look friendly and approachable, and most of the time, even if they look unfriendly and unapproachable, they’ll go out of their way for you. They’ll see you with your stick (your ‘cane’) and hold open doors and free up space on seats without being asked. A seemingly able bodied bloke exiting a disabled toilet held the door open for me and asked if I was OK.

They all automatically respond to your thanks with “You’re welcome!”

They’ll find you interesting and ask you questions about London, and driving on the left, and punk music, and Scotland, and Totten-Ham Hotspur.

I tended to attract American dads while waiting for the family to finish their rides in theme parks, including one smiley guy who stopped me from nodding off in the shade (“Hey man, are you still with us?”) before asking me where he should take his brother when they visit London in the fall.

They still say ‘handicapped’ instead of ‘disabled’ though, so you may need to look out for handicapped toilets, handicapped access, handicapped parking etc. In the USA they can be a little behind on the social model of disability in some ways but thankfully not in others and the overall provision of disabled access is generally excellent from my point of view, but you may have a different opinion depending on your needs.

Weather

The UK and western Europe were enduring a heatwave while we were in California. The temperature in San Fransisco was bearable and cool – I often wore jeans and a fleece when out and about. It was foggy all the time we were there and all down the coast to just beyond Morro Bay.

Research the weather. Just because it’s California doesn’t mean it’s guaranteed to be hot. We found that once we left the coastal fog zone, things heated up considerably. It’ll be a dry heat though, and I think it rains about 4 days a year in LA. You feel sweaty, but not grimy necessarily, and everywhere has air con.

In the sunnier spots, I found it nice to just lie on the beach and ease my painful calves by burying them in the sand. The sand is hot, and for me, it was soothing to be able to do that.

Returning home

Have someone meet you at the airport.

Don’t book anything for a week after you return. Your blog posts will be riddled with errors, and you’ll be jet-lagged for a few days after you get home. You might feel OK, but your rhythms are out of sync and your body needs to do a reset.

Try not to feel too sad that you’re back.

Pacing yourself

Before we left for the States I’d expressed worry to my MS nurse that I would be fatigued and unable to keep up with everyone. She said that was nonsense and I’d be on a holiday high and therefore immune to the darker sides of the disease. She was wrong of course, MS is MS at the end of the day, no matter what you’re doing or where you are, and it can severely impact on your ability and enjoyment of what you’re doing. There were days I had to push through, barely able to walk upright, and days where just ‘one more block’ seemed more arduous than an eleven hour flight.

There’s a method of explaining fatigue that virtually all MSers have heard of called spoon theory where you start the day with a handful of spoons and each time you do an activity you give away a number of spoons equivalent to how difficult the activity is for you. Getting out of bed and getting dressed can equal a spoon or two for some people, and a day at work can use up the day’s supply for others.

I like to think of it as like charging a phone. You start the day with 100% and this starts draining as soon as you open your eyes. Whatever you do then uses battery life. Some apps (activities) drain your battery more quickly than others, so you need to find a charger, preferably a fast one so you can take some photos and post them on Instagram later. The faster chargers for me were often found in shady quiet coffee shops and involved an iced latte or similar, and I’d just like to say a big thank you to Mrs Dave and my two teenagers for silently recognising when I was flagging and allowing me some pockets of time and space to recharge the battery from 1% to 20% before carrying on.

I averaged about 11,000 steps a day according to the reasonably accurate pedometer on my phone, maxing it at 23,000 steps on the Brandy Melville day. Pretty good going which I put down to the fampridine.

And that’s it!

I hope it was useful and/or interesting, and… have a nice day!

...

* SY PCH

A gift to medical science

One of my new year’s resolutions (made in April or thereabouts) was to keep in touch with people more; become a little bit less of a hermit, and generally be more sociable. Those of you who know me well, might think that a bit of a tall order, but I figured the COVID lockdown hadn’t really affected me much, and that was probably indicative that I should put myself about more.

Also, working from home and finding any excuse to contact colleagues or attend virtual meetings made me realise I was probably less of an introvert than I thought.

So, I decided to investigate volunteering, and not the sort of volunteering where you sit behind a till in a charity shop, but volunteering in ways that would be of unique value; somewhere I could bring something purely Dave to the table. If this could be in a way that fitted in with my ideals and values as well, then that would be perfect.

So, to me, apart from work-related skills, the obvious thing was to put the MonSter to good use. He’s generally well behaved after all; he’s mostly house-trained, but still sufficiently interesting in the right circles.

I can no longer give blood because of the MS, and hopefully it’ll be a good while until I can donate my organs to the NHS and my brain to a medical school brain bank, so I wondered if I could contribute to medical science while I was still alive. The ideal opportunity came-a-knocking when I saw an advert from my local hospital looking for volunteers to help in their brand-new education unit.

After a couple of telephone chats, and a quick medical exam, I was placed on their books, and a couple of weeks ago they called me up for my first mission.

I’ll mainly be working with undergraduate medical students, for a day here and there, but it could also be with hospital management, nurses, junior doctors, or consultants. Students need practical hands-on experience of dealing with real (living) people with real medical issues and because I have such lovely examples of nystagmus (shaky eyes) on extreme left and right gaze, fasciculation in the calf muscles (twitchy legs) and my legs sometimes spasm after I sit down too long, they thought I’d be a good test subject.

I also display another symptom that I’d demonstrated to the facilitator, Dr W, in our initial chat, something that I knew was pretty darn cool, and something she said she’d only ever seen a couple of times in her career, but more of that in a bit.

And so, it has come to pass. I’ve finished my first morning as an example patient, literally having my head examined by ten students from a university hospital in the midlands. After an hour listening to a rundown of head wiring, I took part in ten cranial nerve examinations split into two sessions. Each student took their turn with me one-on-one for about ten minutes while the others watched.

Because you have someone’s full attention and they have yours, it reminded me of the time when the artist Marina Abramović sat and stared at people individually, one after the other; giving them the full eye-to-eye across a table.

So, for the cranial nerves: I made a grin, I screwed my eyes up; I stuck my tongue out, saying “aaaah”; I had my uvula examined to see if hung normally; I had my pupils looked at while they swung a pen torch into each eye; I resisted having my eyelids pulled open; I turned my head left and right while they tried to stop my head turning left and right, and I shrugged my shoulders and resisted them being pushed down. I said whether I could feel my face being touched in six different places corresponding to trigeminal nerve endings; I had a ringing tuning fork placed behind each ear and then placed in front and asked which was louder; I recounted numbers whispered into each ear while a noise was made in the other; I had my field of vision tested and probably some other tests I haven’t remembered.

The students were all a little awkward and shy, and no-one easily volunteered to go first. They varied in ethnicity and background; they were eighty per cent female; some knew their stuff; some needed prompting, and some had to be shown the correct way to do something, particularly for the field of vision tests which are a little bit tricky to coordinate.

And it was following a finger left and right with only my eyes moving where I truly shone.

I still get a bit of doublevision looking left which can’t really be detected externally, but when I get the lateral nystagmus on extreme left and right gaze, it is a bit of a textbook example, so they were all glad to uncover this. I’m fairly normal with my other head functions, so this was such a good thing for a medical student to find and they were all rightly proud of themselves to unlock this particular trait. It is a low hanging fruit for someone on the hunt for visible symptoms, but it’s a good one to discover, and they each had their moment of “aha!”.

Eventually, each session ended.

“So… What do you think the patient has?” asked Dr W.

The room fell silent, everyone focused on a spot on the floor in front of them.

“Anybody…?”

There was one guy who’d answered all his questions correctly in the lecture room, and had been a little more confident than the others, volunteering first to do my exam. “Erm, when I watched his eyes move, I think, erm… one of them stopped where it was for a fraction of a second while the other carried on moving.”

“VERY good! You only ever really see that with one condition.” said the doc, and then, annunciating each syllable: “It’s called inter-nuclear opthalmoplegia. It’s a bit of a smoking gun. Do you care to hazard a guess at the condition?”

“Erm… is it… MS?”

And now for the big reveal, a ‘ta-da!’ moment like you get on the telly.

“Dave, what condition do you have?”

“I have… MS!” I replied smiling at the guesser.

I then answered a few questions about my diagnosis journey, and I recounted how important it was to piece together a medical history. What might, in isolation over a period of time, be diagnosed as a potential detached retina, an inner-ear infection, and a mystery virus causing a debilitating lack of energy, could actually be optic neuritis, vertigo and fatigue: three pillars of an MS symptom-portfolio.

And because everyone else had been too wrapped up in the nystagmus to notice the more subtle elements of my eye movements, Dr W gathered everyone round and made my eyes do the left-right one more time, illustrating the blip in movement with both her index fingers, so even I could understand what had happened.

Chatting with her afterwards, she told me they were all third-year medical students and none of them had really practiced on a real living person until now. “Every year, I tell them they really need to get over their fear of touching a stranger and being one-on-one with them. It’s an essential part of the jobs they want to graduate into after all. These barriers need breaking down, so having someone such as yourself volunteering is really valuable, thank you.”

I thought with a smile of the time an initially chatty student had fallen silent, unable to make eye contact after they’d watched a rod being inserted somewhere very private to inflict Botox into my bladder wall.

I enjoyed the morning too and I really felt like I had been of real use. One of the students had stayed to chat with me for fifteen minutes in the tea break. She had had a squint corrected as a little girl, so could relate to my doublevision and eye problems. Also, she had recently been diagnosed with ADHD, so I asked her questions about that and her career ambitions, and I learned something from her too. I said it must’ve been like jigsaw pieces falling into place on diagnosis like it had been for me, and I just provided a listening ear while she bounced from one thing to the next.

I’ve spent most of my adult life losing contact with people and regretting it, and I think that’s where the new year’s resolution came from. Just days before my fiftieth birthday last year, I’d bumped into an old school friend, completely by chance, at a family wedding reception of all places, fifty miles from where we’d both grown up.

This was someone who I’d hung around with a lot as a teenager, and had been very good friends with for a couple of years. Seeing her again was like the intervening thirty-five years hadn’t happened and we both remarked on the other members of our little crowd and who we’d lost touch with since we’d seen each other last. I reflected afterwards that I need to value the people around me more. In another thirty-five years, chances are that I’ll be dead and buried, and becoming a gift to medical science all over again.

DVLA 2022

Like most MSers in the UK, I have to renew my driving license every three years. What should be a simple job – where I tell the licensing authority (the DVLA) that nothing has changed and I get my licence back – often turns into a year-long tug-of-war between me and the authorities.

Because you’re still legally entitled to drive while they spend a year doing their detective-work, it ends up being valid for just two years by the time it returns.

I know I don’t need the plastic license to drive, but try and hire a car on holiday, or try and provide some photo ID without taking your passport out and about with you, and you’ll see where it becomes difficult. I’m embarking on a road trip along the Californian coast this year. Without a physical licence, life on my hols could become very difficult indeed.

After they receive your forms, the DVLA medical group might write back to ask you to make appointments with medics and opticians to prove you’ve told them the truth. They might also send you new application forms frustratingly repeating the same questions as the ones you’ve already submitted.

Of course, when this happens the annoyance, and let’s be honest, the worry, starts to build up. Every letter postmarked Swansea dropping to the doormat is accompanied by an equivalent drop in mood.

So, it’s a bit of a battle. On one side there’s the DVLA Medical Group, and on the other, there’s me and my MonSter, my family and friends, my neurologist, my GP, my optician, my physio, my cats, the entire population of driving licence wielding MSers in the UK, and this year for the very first time, my Member of Parliament, Mr Toby Perkins MP. Toby was drafted in to send the DVLA a stiff email to ask them why they were taking so long.

So, within a week of Toby sending his email, I received a phone call from a friendly sounding woman with a Swansea accent, just double-checking everything on my form was correct. When I assured her it really was, I was informed that my application was now on its way to one of their doctors for approval, and it shouldn’t be long now.

“How long, roughly?”

“Within a couple of weeks.”

Hooray!

A couple of weeks later a brown envelope with a Swansea returns address arrived in the post.

Eagerly, I tore it open.

“Dear Mr Dave”, it read, “We’ve nearly finished processing your claim,”

Hooray!

“Before we issue you with a new licence, please can you provide an up-to-date picture of you with your MonSter for the card? Just fill this form in, and stick a passport photo on the sticky bit. Make sure you return it to us in the next 14 days or we may get nasty and revoke your licence”

What?!?… Booooo!

OK. Strike while the iron’s hot. “C’mon MonSter, let’s go to ‘big-Tesco’ to get a passport photo”

It being a weekend, I knew it was going to tire me out. I knew big-Tesco was going to be busy and I knew my MonSter was going to be super-excited to have his photo taken. Indeed, he was – bouncing around with that ugly grin of his. I locked the front door of my house and turned to walk towards my car when he accidentally bumped my walking stick just as I was about to lean on it. The bottom of the stick flew in front of my ankles, and I fell forward, tripping and entangling myself in the very device I use to keep myself upright.

I headbutted the cobbled path in front of my house.

Badly shaken, and with a throbbing nose and forehead, I eventually picked myself up, headed back indoors, and checked myself in the mirror. Yes, a nice bruise was forming on the bridge of my nose. Thanks MonSter! Even though I no longer feel physically up for it, I really am going to have to go and get this photo done today now; I can’t have a huge bruise in the middle of my face and on my driving licence photo for years to come.

So, after I’d recuperated with a sit down and a cup of tea, I ventured out again. Big-Tesco was every bit as bad as I expected it to be and the MonSter, although a bit tiring, largely behaved himself and actually sat still to have his picture taken.

I dutifully stuck the picture of us both on the relevant bit of the form and signed it, remembering to keep my signature within the box. Mrs Dave then kindly offered to take it to the Post Office as she was going there anyway on Monday morning and she’d send it as a next-day signed-for delivery. I agreed even though it was going to cost about £8 to do that. We weren’t going to have any margins of error on our side.

Literally three days after the form was sent, a Swansea number phoned my phone.

“Hello? Is that Mr Dave?” asked the woman in a rich, Welsh timbre.

“It is…”

“Hello. I’m calling from the DVLA. Just to let you know, there’s a letter in the post asking you for a new photograph. “

“Yes! I’ve received it! I sent it back with a photo… next day delivery… to be signed for… you should have it already…”

“Oh! …OK… Ermm… I was just ringing to let you know to ignore it. It was sent in error.”

I let out a long sigh. It’s never easy.

About a week later my new licence arrived. The whole process had taken nine months. Without Toby’s involvement, it could easily have taken over a year like it has in the past.

I understand why, with a progressive condition, you need to be investigated, and I understand the need for temporary licenses, I just think it could be a quicker process. I’m not sure of the resource levels at DVLA HQ in Swansea, but I wonder if some investment from the government is required here or are disabled drivers as low on the list of priorities as I suspect they are.

To put it into perspective, in preparation for the trip, I also applied for a temporary disabled persons placard (the American version of a blue badge) from California State in February 2022.

The form involved getting my GP (my “physician”) to fill out a section stating that I had MS, and after I’d included photocopies of a hospital letter with my diagnosis and a photocopy of my blue badge for good measure, I sent it to a post office box halfway round the world in Sacramento.

A couple of weeks later it was returned. I’d forgotten to include ID.

Damn! I need to get this sorted before my holiday. I photocopied my passport and sent it back.

Again, a couple of weeks later, an envelope from Sacramento landed on the doormat. It was the disabled parking placard. The whole process from beginning to end took just less than two months.

Remember, the DVLA took nine.

This isn’t the first time I’ve written about the DVLA. Sadly, I don’t think it’ll be the last.

Continue reading “DVLA 2022”

The Magical Brain

Blimey, this feels a bit like a newsletter, but I think there’s a few updates and loose ends on recent posts to tie up, so here goes:

Fampridine

I have my first official batch of fampridine to help with my mobility. As mentioned before, I hadn’t really noticed how much it was helping me walk until I finished my initial trial, after which my legs felt like they were wading through treacle. I’m on doctor’s orders to go out for a walk every day to build bone strength and I’m doing that daily at dawn. I’ll just be waiting to see if I can increase my current walk distance from one and a half miles, up to the Fampridine trial record distance of four and a half miles per walk.

Also, my previous post on this matter mentioned that I hadn’t noticed any increase in walking speeds when I was on the drug, well that’s obviously not the case to me now as I’ve certainly noticed a very marked decrease since coming off it.

Update: It’s 24 hours after my first official dose of F, and while my step count didn’t increase by very much on the walk this morning, I did feel a bit more mobile today, like I’d had oil squirted in my hinges.

Ocrevus and MRI scans

I’m still on Ocrevus as my main disease modifier and I’ve now had dose number 3. My MRI scan showed no new disease activity in the 12 months leading up to it, so it’s doing its job and keeping my internal terror cell in check. So, good news there.

Back fractures and painkillers

It turns out that it could be the fampridine giving me back pain and not what I had naturally assumed were my fractured vertebrae. Now I’m back on F I’m wondering if the pain will return, and whether I’ll need the use of the prescribed painkillers I had before.

Osteoporopolis and Mr T

I still need to have a chat with my GP to discuss potential reasons for having osteoporosis of the spine, but one thing it isn’t down to appears to be anything hormonal. According to a blood test, Mr T was here hiding in the corner of my Osteoporopolis flat all along, so I do have some company here, although he’s currently beetling his eyebrows at me and calling me a fool.

I’m taking the calcium, the vitamin D, and dropping a tab of acid (alendronic) in the nightclubs of Osteoporopolis every week, so I’m still doing my best to build that skeleton back up again.

Voluntary work

I’ve volunteered to be a test patient in my local teaching hospital.

This means sharing my experience to medical staff at all levels, answering questions, and acting as a test patient to student nurses and doctors. I’ve had an initial phone interview and I’m expecting to hear back soon about when I’ll be deployed and what I’ll be expected to do.

I see it as a chance to give something back to the NHS after all the years of care I’ve received, plus it’ll get me out of the house and keep me out of trouble etc.

Cats

After too long a break, I’m sharing a house with cats again. Two rescue cats, discovered with the rest of their litter living on a wasteland in Mansfield. A brother and sister that follow me everywhere, and despite coming from Mansfield, are super-affectionate and are bringing a lot of joy into my life

Meteorites

On the evening of the day I had my Ocrevus infusion, before it got dark, I witnessed a meteorite break up in the atmosphere. It lasted about 2 seconds, flashed white like a magnesium burn and broke in two as it descended. If I was superstitious, I’d say that it was an omen of some sort; if I was the ultimate cynic, I’d say it was the infusion messing with my head. It’s not either of course.

Thinking about it now, it doesn’t seem real, but I reported it straight away to the UK meteorite and fireball network, or whatever they’re called, and as someone who’s analysed meteorite fragments under the microscope at university back in the day, I’m just happy to have witnessed what is likely to be a once in a lifetime event.

And, finally…

Healthcare professionals I need to big up

There are two key figures in my healthcare that have gone out of their way to reassure and rehabilitate me recently:

The first shout-out goes to my neuro-physio. I can’t say how much she’s done for me, but I feel more balanced, literally, since our first session pre-covid. I’m finally off her books now but she’s seen me through some dark times and has been the most holistic healthcare professional I’ve ever had, even asking about my kids and what they’re up to.

The second shout-out goes to my local pharmacist who rang me to find out how I was getting on with the bisphosphonates (I’m getting on fine with them and I’ve managed to incorporate them into my week with no hassle). He set my mind at rest though and when I asked if I’d be able to build bone back up and reverse those declining T scores, he answered “absolutely you can!” which is exactly what I needed to hear. He also told me about a former colleague of his (another male, but younger than me) who did exactly that. He also said I could give him a ring and talk medication anytime I wanted to.

So, two individuals, one in MS-ville and one in Osteoporopolis who stepped up to the mark when they were most needed. It doesn’t always happen, and there are one or two faces I can think of who need to up their game, but until that happens, I can thank my lucky meteorites these two individuals have blazed across my path.

Fampridine trial thoughts

I’ve just come off my trial period of Fampridine and I’ve decided to carry on with it.

Fampridine is a potassium channel blocker which ultimately means that messages can travel along nerves more efficiently. It’s prescribed for MS patients like me, with a walking disability.

It’s something I would take alongside the other medications I’m ready on and it’s not currently available in England on the NHS. So because I’m English and not Welsh, Scottish or Northern Irish and at the mercy of not-so-Nice and their judgements, I needed to perform a cost-benefit analysis before I made the final decision. I was quoted a price for the medication before I took up the offer and, while it’s a price that won’t ruin me financially, it’s still money isn’t it? And with the cost of living currently rising I do have to watch the pennies.

I think if I’d carried on driving 20 miles a day to work and back, I would have considered cutting my already part-time hours back even further. Post-covid I’ll be working from home so it’s a cost I can absorb.

The success of Fampridine is evaluated by how much walking speed increases when you’re on it, but if, like me, you’re not particularly slow in your first 50 metres, how well it works won’t show up if it’s assessed that way. For me, it’s how quickly that speed drops away; how quickly I fatigue. Also, the more subtle changes that you don’t notice until you stop taking the meds. About 30% of English MSers who trial the drug extend their prescription beyond the trial period

I took Fampridine to see if it could increase the distance I could walk, or at least give me the confidence to walk a bit further. I’ve always been a big walker and I’ve blogged multiple times before about this. So, over the 4 weeks of the trial, I’ve been out almost every day just before dawn – the best time of day – and I’ve plotted and measured the length of the route on Google Maps afterwards, making any additional notes in a journal I keep on my phone.

I’ve noticed that I really shouldn’t walk much further than half a mile at a time or I can get severely neuro-fatigued, particularly deeper into my route; my legs stop working, and my back refuses to hold me up (thank crikey for walking sticks!). This really isn’t a pleasant state to be in, particularly if you’re not close to home, so walks with benches are an absolute must.  I’ve planned various circuits that allow me to join the dots of benches and convenient places to recharge. Walking at dawn also helps – there aren’t many people around taking up space where I want to crash-land.

When I perhaps don’t feel as good, I have a basic circuit close to home, that allows for quick escape routes, a bit like sliding down a snake in snakes and ladders. When I feel stronger, the more adventurous walks will often have a goal in mind such as exploring a new neighbourhood, taking pictures of something cool, or staying a while in an area I particularly like.

The longest distance I’ve managed on Fampridine is 4.6 miles. When you consider that I couldn’t really manage more than 2 miles before the trial, you can see the improvement in my confidence if nothing else. At the moment, I don’t even want to attempt a distance of more than the 2 miles I did the other day which I felt very much was my limit. Now, I need to rest and collapse into my sofa after 2 miles; on Fampridine I can stand for a while and do things like get breakfast ready, make a pot of tea, and empty the dishwasher straight after a 4 mile walk.

So, here are the pros and cons so far:

Pros

  • Fampridine seemed to increase the distance I can walk. I managed a maximum of 2 miles without Fampridine, and a maximum of 4.6 miles with.
  • Fampridine gave me the confidence to try and walk a bit further than I could before, and the confidence to make life more interesting by trying new routes. If you consider shopping trips and forthcoming holidays, you appreciate how the extra distance will become a necessity.
  • Fampridine gave me a more assured gait and tripping and stumbling, while not entirely absent, were much less frequent while trialling the drug.
  • My early morning clonus stopped while on Fampridine. This is something I didn’t even notice had happened until after the trial when it returned with a bang
  • Fasting for 2 hours before and after each tablet means I can manage my diet better. I generally took my tablets at 10am and 10pm, so I was practically nil by mouth between 8 and 12. Normally I’m often tempted to graze or give in to a snack in this time.
  • After the trial period, I’ve noticed I have difficulty standing for extended periods. My knees can give way one-at-a-time like Bambi on ice, with no warning.

Cons

  • There’s no real increase in walking speed while on Fampridine. While I’m not walking-impaired enough to be snail’s pace over the first half mile, I’m not like Speedy Gonzales either. I would have liked to feel like I was getting a little extra out of the exercise in terms of speed but I’m probably burning more calories just by walking further.
  • The cost. I’m no longer considering cutting my work hours post-covid, and I have a rainy-day fund for this sort of thing, but my hard earned cash should be spent wisely so is this drug worth it?
  • Back pain. I had naturally assumed this was due to my broken back, but it’s listed as a side effect and has all but disappeared since the trial ended. It’s not just the odd twinge either – I needed some strong GP prescribed painkillers for it, so if I go back on the fampridine, while I might have to take the pain pills again, I will, at least recognise the pain for what it is …and what it isn’t.
  • Fasting for 2 hours before and after each tablet can get in the way of life and needs to be carefully managed when it comes to social events. I don’t feel able to have a cup of tea in the 4-hour fast, for instance. Seeing as this, in the evening at least, can coincide with settling back to watch something on TV, you will appreciate how it can impact a tiny bit on my quality time.

Considering the pros and cons, I think the pros outweigh the cons, but it is tricky because some of the differences between being on the drug or not being on it are very subtle and I didn’t notice them at all until I stopped taking it. Also I’m wary of feeling a bias towards taking it: am I unwittingly talking myself into it? The only real con I can see is the back pain, which can get pretty severe, but that’s what painkillers are for and if I know what’s causing the pain, I wonder if I might take them less often.

There are other side-effects listed in the leaflet inside the medicine box, and I think my worry is that these might kick-in at some point in the future. Apart from the back pain, I did have a very upset stomach one day on the med and I put that down to something I’d eaten, but it was one day, and it doesn’t mean that other side effects will pay a visit at any point.

Another quite important point is that some people notice the benefits of the drug in a matter of days and some take a bit longer. I reckon most people in the 30% of MSers who notice a difference are like me and notice an improvement over a 4 week trial period rather than relatively quickly, but I’ve also heard it can take 6 weeks before a benefit is noticed. Whether that’s due to drug efficacy, the neurologies and symptom sensitivity of individual patients, or, a gradual dawning that a subtle improvement is underway, I don’t know. Maybe all 3. Maybe more than the 30% notice a benefit but decide the cost involved isn’t worth it. Maybe I have benefits still to be unlocked. Who knows?

So in summary, it was a toss up between feeling confident on both feet against something that gives me back pain, costs money, and forces me to timetable my food and drink. It was a no-brainer for me, and it fell on the right side of the quality-of-life scale and, knowing me I’ll try and turn the cons into pros.

Postcard from Osteoporopolis

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.

A postcard from Limboland

A month ago, if you asked me how tall I was, I’d say I was a six footer.

It seems I’m not. I’m a five-foot-ten-and-a-half short-arse apparently, so essentially I’ve lost an inch and a half (4cm) in height. Even if you consider I may have always rounded up by half an inch, and I may have always measured my height first thing in the morning when I’m at my stretchiest – that’s still quite a lot of height to lose.

Let’s say it’s an inch or slightly less. It’s quite a reduction, and I feel like I’ve lost some of my identity along with that inch. There’s an inch of Dave that’s gone forever.

I was measured just before I lay down for my DEXA scan, so it was something to ponder as the technician asked me to shuffle uncomfortably this way and that on the scan-table.

A DEXA scan is a type of x-ray to measure bone density and it’s used to determine if you have osteoporosis.

My GP has already pre-empted this as the diagnosis and the scan should either confirm it or show that I have osteopenia which is basically osteoporosis-lite.

So it seems I’m back in diagnosis limboland.

This is not a happy place to be in. I’ve been here before, of course, but back in 2008 I caught the flight out of Limboland Airport to a new life in MS-ville instead of Brain Tumour City, so when my emotional baggage rolled around on the carousel, I was able to deal with it all and load it up myself onto my trolley. My family, other MSers (some of whom follow this very blog), a few but not all of my friends, and some health professionals were also there in baggage reclaim to help me push it along until I was able to manage it all by myself.

Now I’m back in the departure lounge, sitting down with some egg-mayo sandwiches (the only ones left in the shop) and looking for somewhere to charge my phone, wondering why the screens aren’t showing my destination yet.

So why could it be osteoporosis?

Well, the type of fracture I have is only really seen with weaker bones. Spinal compression fractures, along with wrist and hip fractures are the commonest types of fracture in osteoporosis. If you see elderly people walking with a stoop, osteoporosis of the spine is a likely cause.

It’s most common in post-menopausal women, of course, and it’s a risk due to the reduced oestrogen resulting from ‘the change’. Hormone replacement therapy (HRT) is a commonplace treatment for women at that stage in life. Male sex-hormones tail-off on a shallower trajectory, so we fellas don’t show signs of osteoporosis until much later in life. It’s a silent condition; you don’t have any symptoms until you fall over and break something, which, as I documented in my last post, is exactly what I did last September.

So, you might be wondering why a fifty year old bloke with MS has osteoporosis.

Well, I’ve not been feeling right for some time and I’ve been honest with myself recently and I’ve come to the conclusion that I’m actually quite depressed. If you do an internet search for low testosterone, without going into too many gruesome details, I pretty much tick all the boxes. Hormones have a pretty nasty way of letting you know something’s wrong.

To put it bluntly, I feel pretty shit!

It’s definitely not a mid-life crisis. That’s something completely different. I made some pretty crap decisions in my younger life and I haven’t set the world on fire (yet), but I’m largely happy with who I’ve become. I think I’m pretty cool. I’m generally at peace with myself. I’d still like to have a challenge in life, but I have no urge to grow a ponytail (again) and buy a sports car.

I had already asked my GP for a blood test to check my testosterone levels at the same time as she booked the DEXA scan.

Being the consumate professional, she also booked about 5 other tests at the same time, ranging from liver function to diabetes tests.

Everything came back fine, apart from one tagged “ABNORMAL”.

And so it’s almost confirmed. It looks like Mr T isn’t pulling his weight, and it could be due to a lesion in my brain.

I still have to do a fasting blood test in a month to confirm it for some reason, and then I’ll be sent to an endocrinologist for treatment, which Dr Google advises could be anything from injections to pills and patches. Once they start to work I should start looking forward to becoming a sexy beast again complete with a slimmer waist a hairier head (maybe?), a gold medallion and hopefully a more positive outlook.

So, what now? I’ve been necking the chunky calcium pills to build my bones up like a pelican gulping down fish. I’ve started walking a couple of miles every day before breakfast just to keep my body moving and get some natural endorphins flowing. I have to swallow some painkillers first to get me going, but it’s a chance to have some me-time with my headphones in the fresh-air of the pre-dawn.

I’ve also seen a physio. A muscolo-skeletal (MSK) one this time.

They were happy with the stretches I’ve been doing and gave me a couple of new ones to try to counteract my sedentary job. They were pleased when I said I’d asked for an occupational health referral at work as it’s been a few years since my last one. They also seemed pleased that I was walking first thing, saying that’s exactly what I should be doing. They adjusted my walking stick so I don’t lean into it as much. They also said any thoracic fractures shouldn’t really affect how I move as that part of the spine doesn’t really move much anyway. The concern I should have is with my lumbar region.

They had my x-ray on their screen so I asked to have a look.

What I saw surprised me. I had expected to see that my spine had crumbled like the last biscuit in the tin. Instead, I was shown what looked, to my untrained eye, like relatively normal vertebrae. There were areas on a couple of bones that weren’t as sharp on the image as they should be, and I was told that these were likely to be the fracture zones, but I struggled to see from these where I’ve lost the inch. Other than these little grey fuzzy patches, it looked fairly normal to me. What I wasn’t prepared for though, was the loss in disc space. It looked like there should be plenty of healthy looking discs for sure, but there were at least two intervertebral spaces in my lumbar spine that looked like someone had let the air out. They looked more like they should be filled by pancakes than rubber rings.

It’s still sinking in a bit, and it’s funny how visualising something helps. I wasn’t aware of anything wrong in the lumbar region until I woke up on the morning after the appointment and felt the ball of pain at the base of my spine. This is pain I obliterate automatically with strong painkillers in my half-asleep state. I’d been focussing on the larger and sharper ache halfway up my back without even noticing anything else was going on.

And when I do my sideways stretches, it suddenly makes sense.

So here I am, like I said, in the departure lounge at Limboland Airport waiting for Mr T to show up, and wondering if I’ve got what I need in my mental suitcase to cope with whatever’s at the end of the flight.

Wherever it is I’m off to, I just hope that this time I have a soft landing.

The aftermath

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.

“No… why?”

“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:

“Abnormal”

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.

Wow!

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.”

“Months? Years?”

“Yep! That could be the case.”

“OK…” I paused. “The rest of my life?”

“Possibly, yes.”

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.

Remembering Pam

Today I’m remembering, and shedding a tear, for my wonderful neighbour Pam who was laid to rest the other day after dying at the age of 89.

Pam was easy company, constantly chuckling to herself as she spoke. Relentlessly good natured, and an eternal optimist, she was always of a sunny disposition and all our worries and troubles would vanish in her company.

We would enjoy many a time just sitting together in the garden in the sun, sharing each other’s company and a pot of tea.

Pam sometimes seemed like she belonged to a bygone era. An era of Scott of the Antarctic or Sir Edmund Hillary scaling Mount Everest. She was very well spoken and exuded an open minded Britishness of the sort that includes a natural inquisitiveness – an explorer mentality – rather than the insular, closed off little Englander. In fact, the only time I remember her getting angry was at David Cameron after the EU referendum. Pam was truly a woman of the world… A woman without borders.

And she would tell us stories of her globetrotting youth – her time living on Pacific islands or exploring the Australian outback. A lover of opera, she would often tell us of the time she cajoled and harangued her sister into joining her for a once-in-a-lifetime night at Sydney Opera House. Conversation and good humour, always flowed, along with a brimming teapot or the bottle of wine we were sharing.

A conversation with Pam often led to some interesting and mysterious places. It seemed that every other sentence was a question that made you think, and think deeply… but not too seriously.

If you ventured into the back garden while Pam was around, you could always rely on her to give you a much needed boost from over the fence:

“Don’t you look wonderful?”;

“I love your daffodils!”;

“Isn’t your garden beautiful?”

…often followed by a string of gardening questions I had no hope of being able to answer.

We were never quite sure of her profession. Not knowing whether it was as a care assistant or a nurse, but Pam was thrilled when our children were born as if they were her own flesh and blood. She was like a surrogate mother and grandmother to our family, and when the children were small, she could be relied on to offer gentle advice or to pop round and babysit, or lend a hand so we could have a rest.

When the children grew older, she would invite them round and they would keep her company and help her in her house or her well loved garden. She’d pay them in juice and biscuits, or she would give them a little money for sweets as a thank you, writing out a little payslip for “work undertaken”.

Living alone, she never seemed short of company, but she could also be fiercely independent. She also had a gently rebellious sense of humour and delighted in anything quirky, or anything that subverted what was expected of her as a woman ‘of a certain age’.

The people who sold us our house, nearly 20 years ago, told us that part of the reason they’d chosen us as buyers was how well they thought we’d get along with Pam…

We did…

Famously.

I miss Pam. I’d often hear her through the wall late at night. We both seemed to be night-owls and I miss the sound of her listening to Wagner in the early hours, or the sound as she stoked her fire, or filled her kettle.

Every now and then I would hear her rattling the coat hangars in her fitted wardrobe in the dead of night and smile – a warm sound in the dark. Slightly alarmingly, I also heard her rattling them when she was visiting her family on the other side of the world.

I let her know on her return and after pausing wide-eyed she started chuckling again about the ghost she must be sharing her house with.

She was like an extra member of the family. She would bake us cakes. She would bring us presents. She would snooze on our sofa.

She would tell us that she loved us.

Pam is still part of the universe. The wind plays in the long grass of the field next to where she is buried. And while her physical remains are lying in the graveyard of the church she attended every Sunday, part of her will also live on in our memories and in our hearts.

We love you too, Pam. Rest in peace

Bringing me cake for my birthday.
Pam Smith, 1932 to 2021