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

Soundtrack

I’ve been slowly putting together a Spotify playlist for this year and thought I’d share it. Every time I hear or think of something I like, I add it and then I play it back on busy days at work or when I’m out walking.

I get bored very easily so the aim is to make it as long as possible and only include things that pass my quality control. It’s nearly 30 hours long so far. Don’t let that put you off, though, just do what I do and dive in wherever.

Think of it as if I’ve made my regular readers a compilation, so here it is:

Download / listen and enjoy

Foot-ups, Fampridine and familiar faces

The other day was a good day for me and my MS.

Not because I felt any better or any different, but because I got a few things sorted, and I dealt with positive healthcare professionals as I did so.

Firstly, I had a hospital appointment with a cheery orthotics specialist to fit me with two foot-ups. Foot-ups are essentially big Velcro bands that fit round the ankle area with a strong elasticated cord, a bit like a bungee rope, that hooks onto the top of your shoe.

I’ve noticed my foot dragging on the floor a few times while out and about, and I’ve even ended up flat on my face once or twice when the stick has failed to save me. Also when I’m fatigued, my feet tend to slap the floor with all the grace of a fully flippered frogman or frogwoman emerging from a lake, so my wonderful physio deemed that I needed some intervention. Foot-ups are designed to bring back some of that heel-to-toe smoothness in your gait, minimising the risk of tripping, and taking some of the fatigue out of walking.

They are a little bit of a faff to put on and I worried that they’d be a lot stronger than they are, but I think the trick is for me to try and ignore them and just get used to my feet regaining some control. I also noticed that I was looking ahead more with them on while I was walking, rather than keeping an eye on the ground immediately in front of me, and that has got to be a good sign. They do take a little bit of getting used to, though, particularly when clutch control comes into the equation, but at least I didn’t stall my car on the way home.

My physio had alerted me that there might be a charge as the orthotics service is now outsourced, but when I asked about this, I was met with a big beaming smile: “No! It’s all on the NHS.”

Good old NHS.

While I’m talking about walking and NHS funding, I read an article at the weekend about Fampridine. It improves walking speed in about 30% of MS patients, but it’s a bit of a postcode-lottery for who can get it on the NHS.

Fampridine has been approved in Scotland and Wales, but it hasn’t yet in England as NICE (National Institute for Health and Care Excellence) have ruled that it isn’t a cost-effective treatment. This may change next year when NICE reassess their decision, but for now it’s only available in England on a private prescription.

It’s going to be an expensive decision for me or anyone else in England deciding to access this drug privately, and it’s particularly galling that it’s available for free in some other parts of the country. Disregarding the ethical and wider economic issues regarding the availability, I’m very lucky that I do have a rainy-day fund for things like this. I thought it worth leaving a message with the MS nurse.

When she rang me back – “Hiya! Guess who it is?” – it was my very first (and favourite) MS nurse. She had ‘retired’ a couple of years ago but has been drafted back in temporarily to answer phone messages and free up the full-timers.

I miss my old MS nurse, so I was comfortable explaining what was going on. She was familiar with my case so talking to her came easily. I mentioned how I’m now stick-dependent; that I’ve been seeing a neuro-physio and that I have just acquired foot-ups. I also explained how I recently spent a weekend in Brighton exhausting myself by achieving a step count of over 11,000 steps a day, but still a few thousand steps behind the rest of my family while they raced off (walked normally).

The long-and-short of it is, I’m going to be referred to a consultant who specialises in movement disorders in neurology patients. If he thinks it’s worth a try, I’ll trial Fampridine for a month at the expense of the drug company. If I’m one of the lucky 30% that notice positive results, which apparently happens pretty quickly when it does, I could get a private prescription.

Watch this space!

It was a positive and productive day all round, I thought. I missed my gym session to go shopping with Mrs Dave, but I squared that away with the thought that I was test-driving my new orthotics so it was a worthwhile exercise and a valid excuse.

I’m just waiting for a day when I can drag myself out of bed at an early enough time to take them for a decent walk.

In the meantime, we can only hope that NICE revisit their decision and follow their Welsh and Scottish equivalents to make Fampridine available on the NHS to the whole nation.

So, it was a day of many words beginning with F: Fampridine, family, foot-ups, friendly faces and so on, but for once it was fantastic that there were plenty of F words missing.

Thanks where it’s due for a badge of blue

OK, so purely in terms of disease progression and mobility it hasn’t been an easy year for me (pandemic? …what pandemic?) so I’d just like to give a shout out to my Derbyshire County Council colleagues in the Blue Badge team for processing my application and delivering a shiny new badge to me in less than a fortnight. When you consider it took the DVLA a whole year to supply me with a new 3-year driving licence, it’s safe to say this is a fantastic turnaround.

As I know from personal experience, local government teams are very often in the social media firing line for things going wrong that are out of their control, so I’d just like to give some thanks and kudos where it’s due. This will be business-as-usual for our Blue Badge team but I’m a firm believer that the business-as-usual should be celebrated when it works well and gives people a sense of empowerment.

I didn’t know how I’d feel if I ever needed a blue badge, but far from making me feel disabled it’s opened up a whole new window of possibilities. Last night I took my eldest to the supermarket just so I could christen it by parking in a disabled space. We were the only car in the car park, but hey!

I’m now really looking forward to using it this weekend. We’re all off across the Pennines, where I’ll become Great Uncle Dave with our newest family members, the mental burden of parking and accessibility well and truly lifted.

Accepting the stick man

As I mentioned in my last post, I have recently started Ocrelizumab infusions. After a year of lockdown, this has involved a couple of trips to the city for long days in hospital hooked to a drip and, face-to-face interaction with other living and breathing human beings outside of the family bubble.

I have noticed on these trips that the more powerful disease modifying therapies, such as Ocrelizumab and Alemtuzumab, seem to be offered to MSers as a first line of defence instead of the relatively ineffective ones – the beta interferons and copaxones (the ones I’ve been ticking over on for all these years). I‘m a little bit rueful that it took a relapse to rob me of some mobility and balance, before the possibility of changing medication presented itself. It’s no-one’s fault though, it’s just the changing medication landscape and the fact that the old meds did a pretty good job at keeping relapses and disability at bay for over a decade. I’ve just swapped my hand grenades for napalm, that’s all.

The consequence of this is that when I arrived at the front door of the neuro- ward, those waiting for their infusions seemed to be newly diagnosed youngsters – a term that, in my fiftieth year, I now bestow on anyone in their thirties. One of those waiting 30-somethings had instantly clocked my stick and sprang forward in his chair to offer it to me.

I was taken aback by this as this is the first time anyone has ever done this for me, and I tend to forget about the stick and what it might represent after a while. As a walking tripod I’m an expert wall-leaner, so I was more than happy to do some leaning and I politely declined the offer, but a door had opened; the gesture was a friendly supportive one, and it broke the ice nicely to talk about why we were both there. We made a connection.

I see the stick as an overwhelmingly positive thing anyway – a force for good – and when it comes to other MSers it’s a great way of connecting and breaking down barriers. When I decided to take the plunge and buy it, just over a year ago, I had been initially reluctant to be seen out and about with it, but it soon becomes second nature – almost an extension of yourself – and I even use it for walking to the end of the garden and back without a second thought. It’s not as cute and full of personality and intelligence as an assistance dog, perhaps, but it’s still an invaluable tool in my arsenal. I am mobility-enabled now and a whole new landscape to trample across has opened up in front of me.

The stick represents so much. An able-bodied person might assume a negative viewpoint, whether they mean to or not, seeing me as a victim (and I’ve had one or two tactless comments from people I know), whereas a newly diagnosed MSer might visualise themselves crossing this particular bridge at some point in the future.

I used to share a house with a philosophy graduate who once postulated there was no such thing as altruism – everyone has an agenda behind their actions whether they realise it or not, so I’m just going to project a bit and hazard a guess at his subconscious motives. I wonder if this offer of a seat to a bloke with a stick was to appease the mobility gods or maybe he was cementing his perceptions (in his newly-diagnosed way) of being part of the ‘MS family’. He may also have been understandably nervous about attending hospital for what is essentially a big deal and needed the connection for reassurance. If I’d wanted the sit-down, I would have accepted his offer, but I think it was good that I refused.

It was good because it conveyed the message, ‘even though I have a stick, I’m still OK. I’ve had all kinds of crap to deal with and I can still manage. I’m still strong. I’m still a cool dude in my WFMU T-shirt. I rock the stick. I’m still me. Watch how well I can lean on this wall.’ But more importantly, it also says: ‘You could be me. You will also be OK. You will manage too’.

As well as completing my first infusion, being offered a seat is also a major milestone on my MS journey – wow, two milestones in one day! I hate accepting assistance from anyone, even if it’s for something I wouldn’t be able to do in a month of Sundays, like I did when a couple of guys I knew shifted a washing machine for me recently. To do so reminds me of what I should have been able to achieve had I not been dealt the blow of this disease. Maybe I also beat myself up a bit for not being paralympian in my efforts to look after myself. It has to be a concept that I’m going to have to make peace with if I’m to do myself any favours growing into my fifties and beyond.

My mum always brought me up to offer my seat on the bus to anyone who needed it more than me. I thought I’d feel like an old man myself if I were ever to be offered a seat, particularly with a landmark birthday looming. In the end I actually felt a lot of acceptance: that of being accepted by other MSers on a level playing field – always a good thing; of me accepting the stick as an extension of myself with its positive vibes and its marvellous powers, but also, most importantly, me coming to terms with being offered and accepting help from others.

Ocrevus checklist

I’ve just had part 1 of my initial Ocrevus infusion. Beforehand, I asked the MS community on Twitter for their top tips for infusion day and I thought I’d combine them with my observations so that I can share them here.

This may be useful for new Ocrevus patients, and I’ll also refer to them myself as a checklist every six months on top-up as, knowing me, I’ll only forget otherwise.

Packing a bag

What to include:

  • Your appointment letter if you have one on the off chance that the hospital staff stare blankly at you and claim they’ve never heard of you.
  • A facemask and hand sanitiser. You’re clinically vulnerable and actually need to isolate for a week after infusion day so don’t risk picking anything up from anyone else, and don’t pass anything on to the hospital staff either. You may not be able to attend without a mask in this age of covid, anyway.
  • Sweets and snacks to counteract the taste of the steroids they give you pre-infusion. I didn’t get a metallic taste on any of my infusions but I think it’s a good idea for keeping up blood sugar anyway.
  • A cold drink in a bottle to keep hydrated (counteracts headaches). Water is fine but squash is probably better for the same reasons as the sweets.
  • Something simple to keep you amused because it’s a long day. I packed a fully-charged tablet (mainly to save my phone battery for sending essential messages). Hospital guest wi-fi was easy to log into and didn’t require a password. It’ll also give you something to look at, so you don’t spend the day avoiding eye contact or pretending to sleep. Don’t pack a book – I packed a Haruki Murakami and found it frustrating and impossible to concentrate on after one page.
  • Headphones for the tablet. Maybe download a film, or maybe a playlist / podcasts from Spotify or similar.
  • A sandwich / lunch. The NHS is a marvellous organisation and I thank my lucky stars that I was born in the UK because of it, but their sandwiches are certainly something to write home about, and not in a good way, unfortunately.
  • Walking stick / mobility aid / blue badge/ catheters / other MS essentials
  • Your appointment letter might tell you to bring your old medication. Don’t bother. The nurses seemed a little frustrated that no one had bothered to delete that sentence from the letter.

The day itself

  • Take a day off work for the day after the infusion. Hopefully you won’t feel ill but you will feel tired and, let’s face it, how often since your mid-twenties have you taken a day off work just for yourself. You’re likely to be up late with nerves the day before and up late again on the day itself from the steroid rush if you sleep at all.
  • Get all your blood tests done within two weeks of the infusion if possible. If you don’t (I didn’t) they do them all over again on the day and you’ll be waiting for the results while everyone else is merrily having their infusions.
  • Have a friend or family member give you a lift to the hospital and arrange a pick-up point for afterwards. You’ll probably feel fine to drive afterwards but it’s not guaranteed, and you’ll be in no mood for negotiating city traffic / car parks etc. The antihistamines they give you to counteract any potential reactions may make you a little drowsy as well.
  • Establish what time you’ll be finished and text that through to your chauffer as they may need to alter their schedule accordingly. If the nurse looks at your drip and says you’ll be finished at 3.30, you will be finished at 3.30, guaranteed. They’re the expert here.
  • Aim to arrive early, if only to bag the best seat by the window (see pictures) but also so you can provide a sample
  • Drink a load before you get to the hospital – apparently it makes the veins stand out better and gives your needle wielding nurse something to aim at.
  • Don’t go for a wee until you’re handed a pot for a sample. The sample is a necessary part of the day to eliminate infections and so forth, so if you turn up with an empty bladder you’ll just prolong things.
  • If they’re about to hook you up to the drip, go for another wee (easier if you catheterise, admittedly) as you’ll be stuck to your chair for a few hours. It’s also a good idea to stretch your legs, particularly if, like me, you’re prone to leg spasms. Remember, there’s no need to be embarrassed about your weak bladder – you’re in a room full of people with MS after all.
  • Remove anything with long sleeves like jumpers or fleeces. I learned the hard way by pulling out canulas by accident. If you’re right handed they put the canula in your left arm. If you pull it out they reattach it to the other arm. It’ll be annoying for you if this happens.
  • Accept all cups of tea / coffee that come your way. You need to stay hydrated. If you need a wee, they can always unhook you.
  • When the lunch trolley rolls around, you’ll probably refuse the sandwich in favour of the one you’ve made and brought with you. Do not UNDER ANY CIRCUMSTANCES refuse the cake * (unless you’re gluten intolerant / allergic). You’re having stuff pumped into your bloodstream to kill your B cells so screw the diet; no-one’s watching; you deserve the cake and it’s the only tasty thing they’ll bring you. Plus, what I said earlier about sugar levels etc.

After the infusion, they’ll hook you up to another bag full of saline, just to flush the last of the Ocrevus into your system. This doesn’t take long. When it’s all in, you’ll bleed back into the tube a little bit and the nurse will come and unhook you. You can now phone or text your lift to tell them you’re leaving on time and you can be on your merry way.

So those are my tips for dealing with the day. During the day, you will have your blood pressure monitored and your temperature taken on a regular basis, and the nurse will be in to see you often to press a button on the machine that feeds you the drip to stop it bleeping. This breaks things up a little bit so the day doesn’t actually pass as slowly as you think it might.

It’s quite straightforward really and afterwards you’ll have that glow from being a super-special member of the Ocrevus club for the next six months at least. Enjoy the ride!

* disclaimer: cake may not be available. In some hospitals it may take the form of biscuits. Don’t refuse them, in any case.

Gloves off

Well, I knew I’d be tempting fate to say that I was feeling fitter and more mobile. It seems that the old MonSter has found a chink in the armour and has left its footprint behind in the form of a few new spots on the MRI.

My neurologist has decided to advise exactly what I wanted him to do which is to nuke the f**ker.

Even though they’re four or five small lesions, he’s decided that because I reported an increase in disability (decreased mobility) at our online meeting last autumn, we should take no prisoners.

He basically handed me a menu and asked what I’d like to try.

So, after a weekend reading the excellent info on the MS Trust website, I ended up talking to one of my MS nurses, about my choice. After about 15 minutes of life-affirming chit chat about music, life, Gideon Coe’s radio show, vinyl collecting and so on, my wife decided it was time to roll her eyes and tap her watch and we addressed the matter at hand.

So, in summary, it’s ocrelizumab that I’m going to go with, aka Ocrevus.

I’m choosing it because it’s one of the most highly effective DMDs available to someone with relapsing remitting MS and although it has its side effects – I’ll be compromising my immune system somewhat – that list is relatively short compared to the other main candidate Alemtuzumab. It’s the usual trick of deciding what’s effective and balancing the advantages against the disadvantages and the likelihoods against the will-never-happens and ocrelizumab tends to float to the surface more often.

There are a few bits and bobs to go through first. My neurologist needs to apply for funding and I need to provide some blood so they can do the usual liver and white cell measurements plus a few new ones such as a thyroid test and then it’s just a matter of getting booked in for the infusions. I’ve had my Covid jabs as well, so that’s a major hurdle over with.

Initially it’s a case of having the meds dripped into my vein over the course of a day and then returning for another session a week later. After this I need topping up every six months or so. And that’s it! No setting reminders on my phone; no room taken up in the fridge by boxes of needles; no worrying about packing for holidays. I’ll just turn up at the hospital on time and have a sit down for a few hours twice a year while I get pumped full of B-cell killing nastiness and Bob’s your uncle. I can even legitimately take it easy for a couple of days afterwards as the initial side-effects apparently take a while to wear off.

So, the potential side effects for me range from the less serious infusion reactions (the team at the hospital can slow down or stop the infusion if they feel it necessary) to the more serious ones involved with what will, after all, be a weakened immune system. I’ll be more prone to infections, particularly of the respiratory tract, for instance, so I’ll have to watch out for any persistent coughs, breathing difficulties and so on.

There’s also a minutely small chance of getting Progressive Multifocal Leukoencephalopathy (PML), a rare brain infection that the MS Trust reassuringly tells me usually leads to death or severe disability. I’ll know what to look out for though. I’ll be looking out for brain-related wrongness, or in other words, symptoms that sound like MS. Nice and easy.

So, there we have it. It’s been a while since I last had my defences breached so I feel reassured that we’re responding quite aggressively, and I also feel reassured that we’re not looking at Secondary Progressive MS which is what I had feared. To find out that there’s new activity on your scan, despite your best efforts at keeping the MonSter at bay, can be so deflating, but a plan of action does give a real confidence boost… Bring it on!

Moderate, becoming good later

“OH!… MY!… GAWWD!… Whadda ya DO?”

This question was once catapulted at me from a woman working behind the counter of the MOMA gift shop in New York.

Standing at the front of the line with my Gerhard Richter postcards, I must have looked more than a little bit flummoxed and in need of some clarification…

“How’d’ya getcha voice so DEEP?! Do you do exercises or sumthin’?”

“I guess I was born with it…” I shrugged, the ridiculous image of me as a baby with a deep voice floating up in my head.

As an early developer, I’ve always been a bit self-conscious of my voice. It broke a year or two before everyone else’s and perhaps sounded unnaturally deep for an eleven year old. Having said that, I’ve always secretly fancied the thought of doing voice-overs and continuity announcements.

I moved around a bit as a youngster, growing up in Manchester, Suffolk and Derbyshire before leaving home. I’ve never really stayed in one place long enough for a strong regional accent to stick, other than having one that was vaguely northern, mixed with a bit of RP.

I think I must inherit it from my grandad. He was the first male on my mum’s side not to go down the pit, preferring to sell groceries in the local co-op instead. He won a cup in the 1920s for his singing, his golden tonsils clear of coal dust.

He was a bass soloist.

My mum, a former primary school teacher who taught me to read at an early age, would pounce on every reqional quirk I might pick up and tell me that unless I was a goalkeeper or politician I’d “never get anywhere in life talking like that”… in other words, talking like someone from her own home town.

She was right. The local neighbourhood produced a couple of well known and strongly accented people who featured on TV quite a lot in the 70s and 80s and they either threw darts, kept goal, played snooker or argued the toss in parliament. *

Our village (where the old ladies would glaze over and remember my late grandad’s ‘lovely voice’) was a working class enclave of such broad Derbyshire dialect that people regularly referred to each other as ‘thee’ and ‘tha’ and, more bizarrely, pronounced the word handle as “angle”, and the word angle as “handle”.

So when one of my colleagues thought I might be ideal for providing the voice in a covid themed spotify/instagram ad campaign directed at young adults, it was a little bit of a Jim’ll-Fix-It moment for me. I leapt at the chance to give it a go and I recorded a series of phrases for it on my phone in my slightly echoey back room.

So here I am, I’m now interrupting music in the headphones of tutting teenagers and young adults within a certain radius in the East Midlands. And, as my colleague jokingly pointed out, I now have a little portfolio of videos for any future career change.

So if anyone would like to buy my voice you know where to come, and if you ever hear me reading the shipping forecast you can rest assured that I have achieved my ultimate goal in life and the old ladies of north Derbyshire would be proud.

* Barbara Castle, Dennis Skinner, John Lukic, John Lowe, Bob Wilson, Nigel Bond, and Gordon Banks to name but a few.

“It’s a miracle!”

I don’t want to tempt fate and I don’t want to count chickens before they’ve hatched or any of that but…

…It seems I can walk again.

Now, this doesn’t mean I’ve been to see some Jim Jones style preacher, and it also doesn’t mean I’ve quaffed some magical elixir derived from a temple in a South American rainforest either.

What I mean is, I can now walk a bit further than I could.

I often go out for a walk before breakfast on weekdays (weekends are for ‘lie-ins’ *). Until last week, I’d tell anyone who asked, that I wasn’t able to walk more than a mile or so before my legs would turn into some sort of high-density jelly; my feet dragging on the ground; getting tangled with my walking stick etc.

Over the last week, I’ve been able to walk (fanfare)… three miles!

Not quite as exciting as an Indiana Jones adventure, but massively exciting for me. I live on the edge of town, so I can now access some countryside, and I’m also achieving my rather modest daily step target of 6,000 steps by 8am.

I’m currently leaving the house at six, wrapped up warm as the sky becomes lighter. I’ll find a footpath across some fields behind my daughters’ secondary school and head off on some farm tracks, the early morning air filled with the sound of woodpigeons and blackbirds, and the gentle rumble of traffic in a town waking up just a few fields away.

It takes me an hour and a half to do three miles, which isn’t that fast compared to the way I used to be, but I’ve been following my physio’s advice by planning a route that takes in as many rest stops as I can find. These rest stops include benches, low walls and grassy hummocks to plonk myself down on, and fence posts to lean against.

I’ll get back home, just as the local dog-walkers are emerging from their front doors. I’ll make a nice pot of tea and pop a couple of slices of toast on while the rest of the house is waking up.

Crucially, I have enough strength and energy to stand and walk within the safe confines of my kitchen whereas before I’d still be lying in a quivering heap on the floor of my porch, struggling to prise the shoes off my feet.

I’m not one hundred per cent certain where this sudden capability has come from. I’ve been worried about my mobility getting worse, and I suspected Secondary Progressive MS might be on the cards, but I had a full brain and spinal MRI the other week and I haven’t heard back from my neurologist yet.

I’ve decided this must be a good sign.

I’m hoping this is just the remission after a relapse. One of those stealth relapses you don’t notice have happened until it’s too late. There will also be an element of my neuro-physio’s advice echoing round my head as I walk.

I’ve always been into walking as my favourite physical activity. Even when I lived in the East End of London I used to knock up a good eight miles some days, while working for Hackney Council, striding between offices and along the canal towpath that used to skirt where I worked.

So I’m not mincing my words when I say that not being able to get out for a good walk has been really distressing over the last couple of years. I’m tentatively hoping I can reassemble the broken shards of this relapse – if that’s what it was – and build on what I can do now. I find I’m now spending slow moments in my working day, planning small extensions to my current route on Google Maps.

You don’t really appreciate what you’ve lost until you lose it, so while the rest of the country is getting their jabs and anticipating the end of the COVID lockdown (I’ve had mine, by the way), I’m struggling to feel anything about it. Instead, I have something precious and delicate; something that could be snapped away from me in an instant; something that seems to be showing some signs of life again, and that’s all I can focus on right now.

* weekends = 7am

Formula

Assam

in a pot

pre-warmed

rinsed not washed

piping hot

leaves not bags

don’t over-mash

milk just a dash

red as brick

drunk quick twice a day

twelve hours apart

leave it neat

nothing sweet

let it fire up the heart

let it scald the osophagus and make you frown

forcing you to sit up

as it goes down

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* mash = brew (local dialect)