The other night, the MonSter made an appearance in one of my dreams. I rarely recall any of my dreams, but this is his debut as far as I can remember. I think I’m always able-bodied in my dreams.
I do have a set of recurring nightmares that tend to crop up when I take certain medications*. The nightmares involve me moving towards my doom. They often involve feelings of heaviness, an impending threat, a stifling darkness, no turning back, and a sensation of sinking – whether that involves walking down some steps, or a hill, or another form of descent.
They’re the sort of dreams I imagine I’ll dream in my last moments.
This dream was more of your classic anxiety dream, the sort where you’re naked and everyone else isn’t.
I’d won a competition to join the first manned NASA lunar mission since the 70s.
It was a big deal. I was the civilian astronaut. The Christa McAuliffe in the crew, if you like, and the lunar landings were going to be streamed around the world. Classrooms of children back home were going to gather round their TV sets to see me set foot on the lunar surface.
I think I’d been chosen because I had a disability.
I was chatting excitedly to a friend outside my house, “just imagine – this time in two weeks, I’ll be walking on the moon!… The actual moon!”
There was no training or preparation or anything, of course, because it was a dream.
Anyway, the dream fast-forwards to the moon landing and I’m somehow nervously negotiating and struggling a bit with the ladder from the lunar module. Hyperventilating and, realising I should have prepared something to say, I end up fluffing the same lines that Neil Armstrong said when he set foot on the moon in 1969.
I’m getting used to not being weightless again after the space flight but in the weaker lunar gravity, just like in nervous Earthbound moments, my legs have turned to jelly, and I can’t move. It’s that kind of panic that you have when you’re learning to swim as a kid and find yourself out of your depth.
Suddenly I’m aware that I’m standing in the vacuum of space, and my spacesuit is only a couple of centimetres thick. The features of the moon look much larger than I’d imagined, like hills and mountains back home, but without the colour, and all the eyes of the little shining blue jewel in the dark firmament overhead – all the classrooms full of children, all the world leaders, my proud family, everyone – were on me. They depended on me being the ordinary guy. The guy taking their place on this one-of-a-kind trip.
So, I’m just standing pathetically on the surface of the moon lost for words while the real astronauts get busy setting up the scientific equipment they’ve brought.
Encouraged by the other crew members, who must’ve been thinking I was a right sap, I make a step and I fall flat on my face. I’m aware that I’ve bounced back up a bit, so I manage to get onto my feet, but fall backwards and basically make a fool of myself losing my balance and bouncing helplessly around for a bit.
Eventually someone takes some of their valuable time out of whatever vital experiment they’re doing and brings me a bowling ball and a feather, and I realise what I’m meant to be doing and I finally get my space legs.
So, I stand in front of a little tripod mounted camera to demonstrate gravity in a vacuum to a world full of school students.
And then I woke up.
Well, I’m no psychoanalyst, but I know what a lot of this dream means.
I’ve tailed back most of my mental bucket list now. I don’t think I’ll ever make it to some of the destinations I’ve dreamt about – the Tokyos and Macchu Pichus of this world – as I don’t think I’d be capable of the physical demand or mental preparation that they would entail.
More pertinently, I feel there have been a lot of allowances rightly made for me and the MonSter, but every time I need help, I feel very self-conscious and a drain on other people’s time and good nature.
I think it goes beyond embarrassment at the way I walk or wobble about as well.
I wonder what value I bring to the world. Am I just standing with a bowling ball and feather while others are living their enriched and fulfilled lives? Am I just going through the motions?
Maybe I’m just living with imposter syndrome.
Perhaps I’m only pretending to be a normal functioning human after all.
The other day, I went for my first functional electrical stimulation (FES) appointment.
I’d had a chat about FES with another MS patient at my most recent Ocrevus infusion. He’d told me about how it had changed his life from only being able to walk a few metres to being confident enough to walk ‘normally’… whatever normal is. But he was talking about walking down to the tram stop, and that was a fair enough distance from where we both were and down a fairly steep hill as well.
That sounded good to me. I’ve been very down about my ability to walk in recent years. As someone who used to walk everywhere and as my principal method of exercise, my mobility has affected my mood enormously. I’ve even been doing trade-offs in my head with the MonSter: negotiating deals where I swap my issues with walking for other equally shit symptoms. Seriously though, I’ve finally reached the stage where I’ve sought counselling about it. It gave me food for thought as I began my semi-controlled descent down the hill to the railway station.
I noticed every time my feet scuffed the floor, and I noted how I didn’t really stop promptly at junctions, and how my downhill momentum would carry me off the kerb and a couple of feet into the road as I stumbled along. Once upon a time, I would’ve welcomed the opportunity to have a bit of a mooch round the shops before heading home, but I collapsed exhausted onto the train just wanting to be home with the kettle on.
So a couple of days later, when I’d recovered, and after watching a few YouTube videos and visiting a few MS websites, I rang the MS nursing service to see what I could get, wondering if the nurses would put a bit of a downer on things.
“Yeah! Sounds like it would be a good idea for you. You tick all the boxes for funding. I’ll contact the specialist mobility service and see if they can arrange an appointment for you.”
Blimey! OK.
Three months later, here I am.
Me being me, I arrived at my appointment an hour early, so I decided to tire myself out to portray myself at my worst. I didn’t want to appear like I was wasting anyone’s time. I did this by walking up a nearby hill, seeing if I could make it to the next telegraph pole or bush as I went. Eventually, I decided that it was time to turn around, forgetting that downhill is almost as hard as uphill for me. By the time I arrived at the clinic and plonked myself down unceremoniously in a waiting room seemingly full of amputees, I was really struggling to remain upright.
“Dave decided to wear himself out for us so we can get an accurate idea of his issues.”
“Oh, thank you, but that wasn’t necessary.”
I still think it was a good idea, though, as I wanted to see any improvement the intervention might make. The assessor who led me from the waiting room had noticed how I’d casually bounced into the corridor wall and held onto it for half a second, and how my feet didn’t always point in the direction of travel. She’d also noticed my right leg jerk lightly upwards while she was concentrating on my left.
“Did you see that little flexor spasm?” I asked.
A smile and a nod: Yes.
I felt that every single movement on my part was being picked up by a crack team of mobility specialists… the SAS of the medical world.
They sat me in a chair, and one faced me, assessing my leg strength and looking at how my feet positioned themselves on the floor. She reeled off directions and numbers over her shoulder while she manipulated my feet and the other made notes. They noted a slight ataxia that my neuro-physio had also discovered a few years previously.
They also gently interrogated me. What medications do you take? What job do you do? Do you work from home? Are you full-time? Have you seen a physio before? Did they give you exercises to practice at home? Do you do them? Be honest… do you? How often do you trip? Which foot trips the most? How far would you say you could walk? Describe what walking is like for you. How often would you say you tripped in a day?
“What sort of things cause you to trip?”
“Ermm… one foot catching the heel of my other foot sometimes, but mostly the planet I live on getting in the way. I scuff my toes on the floor, and that’s enough.”
That’s one of the reasons I use a stick after all. The number of times it has saved me from scraping my face along the floor are many.
I asked about my spasmy legs, my clonus, and my lively reflexes, but they didn’t appear to be a problem when it came to FES.
Basically, FES involves attaching sticky padded electrodes to problem muscles in your leg. A pulse of electricity initiated from a pressure pad in the heel of your shoe buzzes the muscles necessary to lift your foot as you walk. It’s like an electronic foot-up but one that doesn’t involve pulling strong bungee cords, fiddling with metal hooks, or putting up with an itchy velcro-tightened cuff around the lower leg.
With a foot-up as well, I found that if you’re tired and your foot’s really going to drop, it’s going to drop. It also doesn’t straighten your foot. If your foot veers left or right, it doesn’t correct for that.
If you position the electrodes correctly, the FES device will do that for you. It’s a curious thing to watch your foot lift and point forward as they increase the current from the device. You can then use one of the electrodes to position your foot before you walk – moving the pad right points your foot right, moving it left points it left.
There’s a bit of fine-tuning with placing the electrodes initially. They mark the spots with a Sharpie so you can see where they go. They take a picture with your phone as well, and they show you which bits of your leg bones you can use as landmarks when triangulating placement of the pads.
I was then asked to do a timed walk between two spots, which they videoed. I walked the walk with my stick but with no veering off to the side and actually lifted my face to look ahead of me instead of watching my feet to see where they were going.
“How was that?” they asked after I’d successfully and comfortably walked in an almost laser-straight line from one end of the room to the other and back again.
“Amazing!” was what I wanted to say, but there seemed to be something in my throat that wouldn’t let me speak. A flick of a switch had enabled me to walk properly for the first time in years.
“It’s OK… It’s OK… we get it all the time.”
Another thing they see all the time, apparently – and I didn’t disappoint – is people wearing Skechers. I guess they’re the ultimate in comfort for slipping on and off in a clinical setting.
I’m going back in a couple of weeks to give feedback on how I’m doing and after that there will be a regular series of appointments to see how I am, much like how I might see my neurologist or nursing team. I’m currently keeping a diary to see if it might benefit my stronger right leg as well. I counted two heel scuffs and one toe scuff as I climbed a gentle slope this morning, all with my right foot. My left foot was scuff-free.
It’s not a cure for my motor fatigue, unfortunately. I’m still going to tire myself out beyond my capabilities, but if my walking has improved overall, it should take a bit longer before my system’s overloaded, I think.
I spent the rest of the afternoon walking around the city centre, taking regular rest stops. I managed 12,000 steps overall.
The morning after, I woke up at 5 am, wired myself to the FES device, and did my usual stealthy pre-dawn walking circuit.
Earlier in the week, I hadn’t completed the same walk in any degree of comfort. My strongest leg had been the third one I was carrying in my right hand, and I had practically dragged myself home, trying not to fall as I was leaning over so much. I had bent almost double as I fumbled with my keys and I’d collapsed on the floor of my porch as I struggled with my shoes.
This time, there were no problems at all. A comfortable walk with the usual rest stops, but a normal walk that most people might take for granted. I didn’t even need to lean against the wall of my house as I retrieved my keys.
I know it’s still very early days, but it feels like I’ve won a battle. It’s a battle in a war that I know I can’t win, but it’s an important and decisive battle nevertheless.
Totally wired! The NHS lent me the baggy shorts, by the way.
It has been a while since I’ve published anything on here. I have written posts but they didn’t come up to scratch in my opinion, so they never saw the light of day.
So, with it being Christmas, I thought I’d send my equivalent of a round robin to just bring a few things up to speed.
Angina
You may remember I argued with my GP that I didn’t have angina despite a family history and transient chest pains on exertion. He then prescribed the GTN spray, aspirin and whatnot.
Well, I asked for a referral to cardiology. Cardiology scanned my heart (which is one of my weirdest hospital appointments ever), and they sent me a letter to say I’m fine. No heart disease; no angina; everything fine.
I’m celebrating with a fry up followed by cream cakes and strong coffee now.
It just goes to show though. If I hadn’t questioned it, I’d be living with the stress of a wrong diagnosis and taking pills that I didn’t need. My travel insurance for my holiday in Malaysia last summer would have been a lot cheaper as well.
FES and motor fatigue
Being an 80s indie kid at heart, I felt the strong need to see Echo and the Bunnymen with the Liverpool Philharmonic when they toured the classic Ocean Rain album. This is a pivotal album in my teenage years so I felt I needed to see them. I’ve seen them a few times now and they’re also playing at Sheffield City Hall next year, touring their Songs to Learn and Sing album. All the singles from the 1980s. I can’t miss it really, yet I’m leaving it a bit late getting tickets for some reason.
It was good to meet up with London based friends, and it was also useful to gauge how far I can walk in one go before my legs turn into lumps of uncontrollable meat jelly.
It’s one mile, or the distance from the Albert Hall to where I was staying in Earls Court. More than that might involve collapse.
An indication of how bad it got came when a complete stranger came over and asked, “are you alright mate?” as I clung on to a lamppost in the early hours.
I’ve been sick of the gaslighting from some of my MS team who have told me in the past how good it is that I can walk a mile. So, it was nice to have an MS nurse who knew what I was on about when I said it was about the quality of the walk and how I deteriorate rapidly after about quarter of a mile.
One of my Ocrevus crew told me about how FES (functional electronic stimulation) had been a lifesaver for him. He’d gone from being able to walk about 5 metres to walking anywhere he damn well pleased. He still had a stick, but I’ve heard cases of people throwing the stick away after the treatment.
Basically, it involves attaching electrodes to problem muscles in the legs which are stimulated while you walk. Anyone familiar with TENS machines will recognise the principles involved. I have an appointment at the Northern General in Sheffield to see if it’ll help me. Fingers crossed for that.
Then I’ll have to see if I qualify for funding with my local clinical commissioning group.
I guess it’s… ahem!… one step at a time. 😊
Clonazepam and breathing
My yearly neurologist appointment ended with me being prescribed clonazepam to quell my nightly muscle spasms which have got a lot worse recently.
It worked a treat on the legs but also stopped me breathing, so I’ve binned them.
I’m just letting things get back to a base level and assessing if I can just control my legs with better timing of the gabapentin tablets. I may resurrect baclofen which weakened me when I tried it years ago, but I might decide a decent night’s sleep is worth it.
Volunteering
I’m still volunteering once a month as a ‘patient educator’ with medical students at my local hospital and I’m loving it. I like meeting them and feeding back how I find their examinations; answering their questions honestly and without embarrassment.
I guess for me it’s also about taking something dark and turning it into something positive.
Malaysia
I’m still on a mission to go on long haul holidays while I can still afford to, so Borneo and Kuala Lumpur were my destination in summer ’23.
Excellent holiday, but not really set up for the disabled unfortunately. I went flying on a ridiculously slippery rainforest walkway much to the rest of the family’s embarrassment. I wasn’t the only one either, some of the able bodied in our crew did the same.
I also caught a taxi at one point just to cross a road in Kuala Lumpur. The weight of traffic, the heavy thunderstorm going on and my tired legs meant I didn’thave the confidence to cross the road without incident.
My late mum was the fount of all knowledge when it came to family history.
She knew the names of all the distant cousins; who was born out of wedlock; who had died before their time and why; who had problems with alcohol; who was concealing their extra-marital affairs; who was LGBT in an era when this wasn’t mentioned, and things like that. She must now be a bit of a gossip among the ancestral ghosts, I think.
And she’d know all this on my dad’s side of the family, too.
Family history has always been a bit of a jumble in my head. Growing up, any innocent question about family on my part would be met with a reply that would instantly send my brain into an emergency shutdown, subconsciously maintaining a polite, listening face, while my mum – in her element – would start reeling off the facts: “my mother’s second cousin’s husband’s uncle was once married to the daughter of…” and so on.
Both my parents are no longer here. Mum died seventeen years ago, and my dad’s clogs popped relatively recently. Since I cleared their (my) old house I’ve been storing a few carrier bags in my loft, all stuffed with old photographs spanning the last 150 years or so.
Looking through them, has been informative, particularly because mum has helpfully scribbled a note on the backs of them explaining the situation and circumstance each was taken in. She’s also scribbled a note listing names and saying how those depicted are related to each other.
So, I thought it would be a good opportunity to build my family tree online; see how it all fits together, and store a few of those photos that I’ve scanned. I used Ancestry to do this, and frankly found it a breeze. I uncovered quite a lot of interesting information too. I’m also exploring the roots of the tree as much as I can, following them into areas where the gene pool generally stayed in a single spot over several generations.
Dad’s side of the family are quite a varied bunch, hailing from Scotland, Sussex, Devon, West London, Ireland and County Durham as well as a long line of Serjeants based in Ipswich (which is where my dad was born and grew up).
Mum’s family are very heavily East Midlands, and by that, I mean I have one strand in my direct bloodline from Nottinghamshire, one from the other side of the Pennines in the Staffordshire potteries, and the rest, the vast majority, are all north Derbyshire.
They came from Newark, Uttoxeter, Ashover, Heage, Chesterfield, Tupton and Wingerworth and they all converged on the new industrial town of Clay Cross to work in the collieries. A new railway tunnel had exposed viable coal seams as it drilled through the north Derbyshire landscape.
It was as if George Stephenson himself had pulled a plug from a plughole as he chuffed through, and in the subsequent vortex all eligible men for miles had been sucked underground to mine coal.
So, I’ve found the tree building illuminating, particularly with the little stories it throws up. For instance, my great grandad on my mum’s side (my grandad’s dad) is an interesting one. He was born out of wedlock to a 19-year-old mother, taking her name, Davies, instead of Swift like his dad and siblings. He had children with two sisters (one of the sisters had died young). Much later in life, he also discovered his parents dead in their brand-new retirement bungalow, asphyxiated in their sleep by a faulty gas fire.
On my dad’s side, I have a great grandad who worked as a butler in a large country house, who was himself the son of a Royal Artillery gunner, which probably explains why I can lose myself when polishing shoes using a pair of heavy-duty antique shoe brushes (family heirlooms, which I now figure must be 19th century military issue).
Also on his side,I was interested to explore Dad’s Irish ancestry. I was always told I had O’Dowd family hailing from Sligo which is a part of the country Mrs Dave has strong connections with, and so is already quite familiar to me.
I’ve discovered, according to UK census returns, that my great great grandmother, Mary O’Dowd, was born in Roscommon in 1851 and not Sligo as originally thought. She died at the age of 51, an age recently arrived at by myself, and judging from photos and portraits, she had a relatively comfortable life in Pimlico, west London. She’s still a big grey area though, as I know nothing about her first thirty years, and I’ve only seen her married name written down. Even that changes from Sanderson (the official name) to Saunderson, and to Saunderson-Burage depending on where you look.
I can imagine it might be needle and haystack time when looking for a Mary O’Dowd, born in 1851 Roscommon. Particularly when you only have your family’s, admittedly reliable, word that she’s an O’Dowd.
I just wish I had more info on her family and her migration, which must be famine related, but who were her family members and how did she end up marrying into the English middle-classes? Did she make the journey alone? Who were her parents and family and what became of them?
I have three photographs and one watercolour of her, and she’s the spit of my eldest daughter. The earliest photo is of a little girl sitting on a stool in a photographer’s studio in London according to the info on the back, which suggests she migrated at a very early age.
Speaking of the spit of my eldest daughter, I bought her an Ancestry DNA kit for her to send off her saliva. I figured she’s a history student, so she’ll be into that.
She is.
Ancestry breaks your DNA down by parent and her reports that she had no Irish on my side but 6% Norwegian and a whole lot of Scottish spurred me into action.
So, what makes me me? How did I get the Norwegian? Which elements of my parents influence my genetic breakdown? Did I get any Irish from Mary O’Dowd? What geography shapes my English blood? Do I come from farming stock or mining stock?
So, I waited for the DNA kits to come down in price, bought one, did nothing with it for about a year, and then sent it off and waited a couple of months while the boffins in lab coats did their thing.
The breakdown goes something like this:
I’m 6% Irish which ties in mathematically to having an Irish great-great-grandparent. Thank you, Mary O’Dowd.
I’m 9% ‘Scandiwegian’ (a fantastic word I picked up the other day) – mostly Denmark and Sweden and mostly on my mum’s side which explains her love of IKEA, ABBA, Bjorn Borg, and Carlsberg Export (kidding, sorry Mum).
I’m 35% Scottish, explaining why there’s pictures of my great grandad Kay fully sporraned and kilted out in McKay tartan. Mostly dad’s side for that.
And I’m 50% English of which practically all of it is Mum’s, so East Midlands, a little bit of potteries, and some South Yorkshire. This ties in with where I live right now. There is nothing of note from the south of the country.
So, I’m not genetically a Serjeant it seems. My DNA shows no Ipswich, no Suffolk, no East Anglia at all!
It’s funny because I have a love/hate relationship with my family name. I’ve spent the last half century spelling it out for people. It’s even a legitimate alternative spelling of Sergeant (with a g), so actually appears in most trustworthy dictionaries as a more archaic version of the word. It lives on particularly at the opening of parliament and the serjeant-at-arms who accompanies Black Rod. But it is an absolute pain in the backside.
So, I’m wondering what would be a good replacement surname? What would I like to be called instead? What would fit in with my DNA? What would be cool?
I’m looking to my mum’s family tree, as ultimately, while I can claim the heritage from Dad, I’m not Scottish and I’m certainly not Irish. It would be cool if I was, I think, but I don’t want to be pretentious and I now feel more rooted, snuggled in the bosom of my Derbyshire ancestry more than ever. I think a Derbyshire name would be more relevant.
My first thought was my gran’s maiden name Wain. Wain is very much a Derbyshire name but it does have negative connotations among local secondary teachers I know, as a family of ne’er-do-wells and ruffians. Plus, I’m not sure about how it rhymes: Dave Wain, Shane Wain, Jane Wain, Dwayne Wain, Wayne Wain etc
So, perhaps my mum’s maiden name, Davies? Too Welsh, I think, and a bit like a Welsh version of Smith. I have no Welsh. Also, considering the family tree, it represents the potteries. I remember going to Leek once for a wedding and that’s the last time I set foot in Staffordshire, so I have no connections apart from a thin bloodline.
But there is a top contender. It sounds cool. It has a good meaning and derivation, it comes from a long line in a village local to me, and it died in my lineage when my great grandad was born out of wedlock. It would make a good tattoo of one of my favourite birds swooping past my ears or spiralling down my arm.
It should have been my mum’s family name:
Swift.
If I were to go through the hassle of changing my name. This is the one I’d choose for definite. Maybe it could be my nom-de-plume – David Swift. In my mind there’s nothing I feel uncertain about in this name, so I told my youngest about it.
“Cool!” she said, “Like Taylor Swift!”
Hmm… Maybe I’ll get the swift tattoo and leave it at that.
I’ve admired your films and enjoy them for their melodrama, irreverent humour, bold colour, glossy décor, quotations from popular culture, and complex narratives.
I appreciate that desire, passion, family, and identity are among your most prevalent subjects in your films and I recognise that your work represents a cultural renaissance that followed the end of Francoist Spain.
But using multiple sclerosis as a lazy plot device to kill off a character in your film Julieta is unacceptable to me, and I’ve just got to say one thing:
No!.. Pedro. No!..
Your films have gained worldwide interest and developed a cult following. The last thing your audience needs to see is a person newly diagnosed with MS sitting in hospital being feeble in one scene, and lowered into the ground in a coffin in the next.
I’m disappointed in your insensitivity and your apparent lack of research or consultation with people affected by multiple sclerosis.
I will still enjoy your films, but you need to sort yourself out before you tread on the toes of any other people living with chronic illness.
Life limiting does not mean life ending.
***
Apologies to Paul Whitehouse, Harry Enfield and Wikipedia for the blatant plagiarism.
When I reached the age of thirty, I was helping my father-in-law do some gardening when I bent over to pick up a leaf and I felt a twang somewhere in my lumbar region.
This twang put me completely out-of-action for a week or so afterwards.
My GP had simply smiled and said, “welcome to your thirties!” with the jokey implication that I could start to expect things to fall apart from that point onwards.
Little did either of us know, that five years previously I had already had a precursor of what was to come, with an attack of doublevision that had lasted no more than an afternoon and has been documented only in the occupational health records of the London Borough of Hackney – my employer at the time. This was an episode that has been retrospectively diagnosed as Clinically Isolated Syndrome.
I was already being scoped out by the MonSter.
The next couple of years were medically insignificant, and then these were followed by a period where I was relentlessly battered by undiagnosed or misdiagnosed symptoms. These eventually led to my unwanted squatter moving in permanently. The MS diagnosis was confirmed and delivered to me at the age of 36.
Now I’m officially in my early fifties I’ve found that my body is starting to fall apart all over again.
Currently, after everyone else in the family has gone to bed, I’ve been watching a few ‘Dave programmes’ on catch-up. These are the sort of programmes that I love, and the rest of the family inexplicably have absolutely no interest in. One of these is Mortimer and Whitehouse Gone Fishing, where close friends, Bob Mortimer and Paul Whitehouse catch fish in various spots round the UK and, among other things, talk about a shared diagnosis of heart disease while they’re at it.
Both Mortimer and Whitehouse have featured heavily in my TV watching since my teenage years. Particularly through Vic and Bob, and the Fast Show. Also, I feel a sort of kinship with Paul Whitehouse because we share that same East End ex-employer. So, when their conversation turns towards their ill health, it’s very real for me and the more I listened to them, the more their description of symptoms started to hit close to home.
I think having a big diagnosis, such as MS, can mean that other illnesses and symptoms can often fly under the radar. I get an MRI scan every year, and my neuro always makes me smile in his write-up for my GP, by saying I have “a very healthy brain and spinal cord… apart from multiple sclerosis.” It lulls you somewhat into having a false sense of security. You rightly feel you’re being watched over and looked after, but it’s easy to forget that there could be conditions and illness lurking beyond the realms of your neurology specialist that won’t necessarily be picked up on.
I’ve had an allotment for quite a while which I’ve recently given up as it was getting ‘too much’, and a few years ago I noticed that I was getting a debilitatingly bad back like a dull ache beneath my shoulder blades while digging, or even when I was just strimming the grass paths or hoeing round my fruit bushes. Sometimes when wheeling my wheelbarrow around I’d have to stop, straighten my back for a few seconds, and then sit down until the ache subsided. It felt like someone, probably the MonSter, was jumping on me for a piggyback, giving me a squeeze round the ribcage as he did so. I’d get the same if I had set about vacuuming the house, very often finishing for the day after only doing one floor, promising to tackle the other floor and staircase another day.
I’d also get this ache while walking if I’d not rested adequately en-route. I’ve been going out for dawn walks for quite a while now, and I’ve always made a point of stopping for a rest every half a mile or so, to the point where I only walk along paths and pavements dotted with benches and perching points.
I remember a couple of years before the Covid lockdown in my pre-stick days, an allotment friend had stopped his van and asked me if I’d like a lift the final few hundred yards to my house as it looked like I was struggling to walk. I was walking back from the station after an MS related appointment in Sheffield and I’d had that ache, and was starting to bend over with the strain of remaining upright. I’d waved him off, with an “I’ll be fine, thanks” before lowering myself gingerly onto a low wall to rest for a few minutes.
I had just assumed it was all the MS. Even my neuro-physio had said I’d perhaps been overdoing it and was probably experiencing neuro-fatigue.
To a certain extent she was probably right, but Paul and Bob had set me thinking…
I like to moan about my MS a bit internally: I do have fatigue and balance problems; I do have leg spasms, and I do have doublevision which has itself improved somewhat over the years. I’m dependent on some serious medications, a walking stick, and a catheter prescription, but if I view everything objectively like my neurologist or nurses do, I must admit that I’ve been fairly stable since my diagnosis with only the occasional minor bump in the road.
Compared to some higher up on my neurology team’s list of priority patients, I’ve been lucky.
Very lucky.
So, what about this debilitating ache?
Is it the MonSter?
Is it related to the squished discs in my lumbar region caught by my recent x-rays?
Is it pain caused by the compression fractures in my vertebrae reverberating round my abdominal region like my GP said it would?
Or is it something else entirely?
From my vantage point on my watchtower, keeping my eye on the known inmates, did I miss that ninja-like shadow flitting around the perimeter fence?
My blood pressure has always been a little bit on the high side. Nothing too serious, but once, when I turned up for an Ocrevus infusion, the nurse on duty later told me they’d been on alert, keeping an eye on me as it had initially been ‘through the roof’. Also, my dad had taken early retirement back in the early ‘90s, due to a diagnosis of angina and heart ill health. He had been signed off as medically unfit to work.
So, with the Gone Fishing thoughts swimming around my head, I thought I’d better see the GP.
It’s noticeable how GPs seem to me to be on firmer ground when talking about heart disease than they are about MS and neurological symptoms. I guess it makes up a larger proportion of their caseload and it’s something they can get hands-on with. He agreed that my blood pressure could do with coming down a bit, so he put me on pills for that and he arranged for a blood test.
I agreed to come back in a month to see how things were.
I had a blood pressure monitor already that I’d bought online, so I made a daily reading and happily watched my bp sink to safe levels over the space of only a day or two. I also made a few small changes to my diet that I’d been planning for a while anyway. I cut out coffee, reduced my bread intake, ditching my breakfast toast for porridge with nuts and seeds, and I upped my oily fish and daily fruit.
My follow-up appointment delivered yet another big diagnosis.
It turned out that my blood tests came back fine apart from the monoglycerides which were a tiny bit high.
“It’s nothing to worry about” said my doc, “they’re borderline, but because of your angina I’ll put some statins on a repeat prescription for you.”
“Erm… excuse me? …did you say angina? Are you sure it’s not just muscular? Some sort of muscle fatigue?”
Apparently not. My dad had angina, he pointed out, so there was family history, and my pain had always subsided when I rested, ruling out anything muscular. He also pointed out that I’d said I’d had a recent episode where I’d struggled to catch my breath after watching something that had made me emotional.
Because I’d been experiencing it for at least three years, he was happy to call it ‘stable angina’, but in his eyes it’s angina, nonetheless.
So that’s where I am. My blood pressure seems to be under control (105 over 69 when I measured it this morning with a resting pulse of 61 bpm) and I’m not experiencing the aches under my shoulder blades on exertion currently. I also have an as-yet-unused spray for under my tongue if I get an angina attack, and it’s a call for an ambulance if that doesn’t work.
My pre-dawn walks are taking on a less slippery, less leaf-sludged winter route currently and I managed a full two and a half miles without stopping this morning which is something I haven’t been able to do for a very long time. I’m pleased that I can walk with confidence and at a clip. If anything cut my walk short today, it was spasms in my leg muscles and a little bit of footdrop rather than chest pains. In other words, just the MonSter waking up.
So, I guess this is a welcome to my 50s. It’s a warning shot in many ways, but perhaps most notably it tells me that just because I have one big diagnosis, it doesn’t mean I’m otherwise invincible.
I can also take away the positive thought that had I not been used to talking with medical professionals on a regular basis, and if I hadn’t had things go so dramatically wrong in the past, it may not even have occurred to me to approach my GP in the first place.
“I’m pretty shit to be honest. I’m in the crap gap.
“Sorry, I should explain. It’s that time between my medication wearing off and my next dose or infusion. I get an infusion every six months…
“In hospital, yeah. I have to go to Sheffield for it. I get a day off from work for it.
“Yeah, I know, lucky me. It’s something called Ocrelizumab.
“…Ocrelizumab.
“It’s a bit of a mouthful, isn’t it? There’s someone on YouTube who calls it Ocreloozimab, I’m not sure if he’s doing that deliberately or not. You can also call it Ocrevus. Anyway, it wipes out all the B cells in my immune system and it starts to wear off about a month before the next infusion and I start to feel crap again, like more fatigued, and a bit…
“Sorry, not a bit….
“I can get very depressed and less able to walk, keep my balance, and stand upright, hence the stick – which I need constantly now anyway. My leg spasms really kick in at night as well, ‘scuse the pun.
“Yeah, they spasm every 20 seconds or so, my calf muscles, and they stop me sleeping. I get them every night anyway, they just seem to be a bit worse right now.
“Yeah, it is painful, though it’s not what you might think of as pain. It’s more like an electrical jolt that makes my knee fly up and my foot curl upwards. I take Gabapentin for the spasms, but it doesn’t always work, and also sometimes I take it too late in the evening because I’ve forgotten, so it’s probably my fault as well.
“The crap gap is a pretty miserable time and I’m slap bang in the middle of it.
“Yeah, it is my birthday next week.
“Thank you! Ha! Sod’s Law, eh?
“No, I don’t think the doctors came up with the term ‘crap gap’, I think it’s just MSers like me on social media.
“Yeah MSers – people like me with MS, they’re a pretty cool bunch by and large.
“I don’t think my doctors even think the crap gap really exists to be honest – the ones that have heard of it – but then, they don’t have MS and they don’t take the meds do they?
“Anyway, how are you?”
What I really say
“Yeah, I’m OK, soldiering on, you know? How about you, are you OK?”
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.
“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!
Dave's Magical Brain 
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