Pre-truths. The eve of March

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The eve of March.

Previously I have written about the seasonality of my MS relapses – and about my frustrations that my own “March / October” cycle cannot be broken.

https://cyclingwithms.wordpress.com/2016/03/24/ms-and-seasonality/

https://cyclingwithms.wordpress.com/2015/10/04/october-h-ill-season/

So, as the “danger month” of March approaches, I’ve again started pottering around the internet in search of hints, hope and (any) advice.

You don’t need to search for long to find message-boards and patient forums that offer anecdotal reports in the same vein as mine. These complaints may vary in the detail, but are united in their frustrations.

A little bit more web-surfing and it becomes clear that the vagaries of such “eye-witness accounts” are backed up by more scientific / academic studies:

from Buenos Aires

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4570563/

to Rome

http://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-10-105

via Melbourne

https://www.ncbi.nlm.nih.gov/pubmed/25283272

The majority of the reports I could find had taken statistical approaches. The first of the links above, however, takes a decidedly more “molecular” explanation. My reaction is that such cold, hard science (although less accessible to the layman reader like me) seems to further beg the question why a better solution hasn’t been found given this apparent granularity of understanding.

My own summary of the situation would seem to be that the links and causations of seasonal correlation are still only hypotheses rather than findings: be they links to Vitamin D deficiencies; melatonin levels; diurnal temperature ranges; changing seasons; or even air pollution levels. As a result, NHS patient-advice has had to remain woolly: take Vitamin C and D supplements; rest; avoid stress and germs; and eat healthily. Arguably, do what you should be doing all the time anyway.

It seems to me that the most reliable solution would be to up sticks and move to a more tropical clime; whatever the reasons/causations, incidence and relapses are markedly reduced the lower the latitude you live at.

I wonder what the cycling is like in Belize?

 

It probably goes without saying that I hope my March this year is better. But I do also have a genuine optimism that it might be so (the danger of hope):

I’ve now got two rounds of Campath chemotherapy under my belt; and twice since Christmas I’ve contracted ‘minor colds’ but, unlike the familiar pattern of yesteryears, these have not developed into 2 or 3 weeks of MS fatigue and illness – but have passed after a few days.

I’ve even been encouraged to break my own golden rule and have entered a March bike race (next week): the rather intimidatingly named “Chippenham Hilly” (it’s hilly and quite near Chippenham).

I do worry that my optical neuritis continues… but, this last weekend, I cycled 270 miles, so I can’t complain of MS-related weakness on the bike.

I’ve even fitted my race wheels to my race bike. And oiled the chain.

My bike, at least, is good to go – aiming to hit March head-on rather than trying to sneak round the sides.

If the above blog is a statement of “pre-truth”, I hope my next one, post-March, is a glorious confirmation of my hope – it feels as though I’m betting quite a lot of morale on this one.

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I read that the “average” bout of Optical Neuritis lasts 3-5 weeks.

I am now counting over 3.

Like a watched pot, there’s no benefit in fretting – I want to just get on with life as best I can.

But that’s not necessarily human nature:

Like many youngsters these days, my young son has an obsession with his game-consol – to the extent that we, like many parents, impose “screen-free” hours/days/weeks as appropriate.

A recent exchange was typical – being told he couldn’t play for another hour, every 5 minutes he kept asking, “Is it time yet?”

My response was that each time he asked I’d add another 5 minutes to his wait.

After a reasonable pause, he countered with – “I’m not asking how long it has been…. I just want you to know that I haven’t forgotten….”

Such is the way with my optical neuritis. I’m ignoring it. But wilfully so.

Strong and Ill

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There are bigger things at play in the world than MS. And than cycling.

In the last few weeks my extended group of friends has seen tragedy, and births – so I write this somewhat cautiously, wondering whether there should be room on the internet for such trivia; but the latest developments in my MS are interesting (or perplexing) enough to be worth sharing.

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Every month my bike club does a Hill Climb Challenge – with members recording timed ascents of a nominated road around Bristol. The proper racers, finely tuned machines that they are, tend to eshew this format to focus on actual events. but, for hacks like me, it provides a (very) light-hearted bit of competition. In January, I was the fastest rider (for the first time since early 2015). I hadn’t been doing too many miles, and felt as though I had more of a kick in my cycling legs than I’ve had for awhile. Towards the end of the month, I then did a couple of longer weekend rides: firstly, a tentative one; then more confidently. Last week, I rode a “100”, non-stop (apart from a couple of punctures). I’m not going to get the fastest time this month, but I set a respectable mark that others will need to try if they’re going to beat….

But I don’t type the above to show off – believe me when I say I’m beaten enough to know how slow I ride compared to actual athletes, (I still remember trying to join a Bristol-based chain gang of road cyclists 3 weeks in a row… and riding a cumulative distance of about 500 metres before I was dropped by the group…) No – I type the above because it sets the scene as to how fit I feel at the moment. In summary, for the first time since late last summer, I feel strong on my bike; and I’ve long used my cycling-health as a barometer for my MS-health. MS symptoms – muscle fatigue or shakes; and numbness or pins and needles slow me down; their absence speeds me up.

How odd then that I also now feel too ill to work.

Psychologically I would say that I feel “upbeat” –  “chipper” even. When my early alarm sounded this morning, I felt well rested and ready for the day.

But I can’t see properly.

My vision is disorientated and confused. I’m trying to type numbers onto gridlines on a computer but can’t get them in the right rows.

I am happily sitting through meetings at work, feeling pretty buoyant, but, as has been an longstanding symptom, I am struggling to hold a pen dextrously enough to write notes.

It’s confusing.

It’s “optical neuritis”.

The advice is that is ‘usually’ passes, or diminishes, after 3-5 weeks. But 3% of MS patients go on to experience temporary or permanent blindness…. The last time I had it, I recall it lasting about a month before it gradually subsided. But, for now, I’m back to stalling at work; attending meetings instead of typing results; and booking half-days…

Strangely though, I feel quite happy – pleased that I’m racing around on my bike. Not sure if this credits my cycling as a valuable crutch; or suggests that my life priorities are utterly wrong – you certainly don’t get paid much cycling at my pace….

Campath +14wks: the data says…. it’s only MS

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It’s been 14 weeks since my 2nd dose of Campath.

Hopefully I’m still only on the very first rung of the long ladder of “the rest of my life” but I thought it’d be worth typing out my experiences of the last few months – not least for those who about to embark on the same.

The similarities in the way my body reacted to Round 1 compared to Round 2 have been marked:

After both treatments it took 3 weeks before I could get back to work – and even then, I had to spend a further week largely working from home. It’s worth adding a footnote to this: I am self-employed so was unpaid during this time. There was certainly no reticence on my part to get back into employment – I just couldn’t overcome the lethargy and spells of vertigo. I have heard accounts of patients returning to work a week after their treatments – however brave or weak you might think I am, there was no way I could have got myself to work that soon.

After 2months the feeling of perpetual hangover seemed to fade. By then I was doing some gentle bike rides and breathing fresh air again. I probably could have been back to full time work – but, luckily, I was in the position of being able to slowly ramp up through 3, 3 1/2, then, for the first time just recently, a 5 day week. I am still probably working at half pace though – concentration and memory both seem like fuzzy relics of what they should be.

As the new year rolled into gear, slowly the side-effects of my treatment began to take a back seat. My day-to-day concerns began to focus once more upon the minutiae of getting a family routine going again. I was still taking the chance to work from home whenever possible – but, on occasion, this started to become a luxury rather than a necessity.

Getting back to cycling was hard – like it always is. But by January, friends on a Saturday ride were rolling their eyes as I overtook them on climbs – “thought you were meant to be recovering”; “easy for some!”. It hadn’t felt easy though. Cold, dark mornings wrapped up in thermal gear – trying to get my body going again, when it didn’t really want to. It was mid-January when I started to be able to accelerate up, rather than just survive, the steeper climbs – and at our weekly “Lunch Club” I started to be able to do my turns at the front again. Then, this last week, when my alarm sounded for those 5.30am starts, a strong coffee was enough to get me going; a month ago it felt as though I could sleep another 8 hours as I craved more rest.

So… so far, so tentatively good.

But the neutrophils (infection-killers) in my latest blood tests are still low (~0.5 vs a healthy minimum of 2) so I’m still vulnerable.

In fact, at a recent appointment at the orthopaedic department, the consultant grew concerned about apparent painful infection in my shin bone – which he had heard could be linked to patients with suppressed immunity. This led to another hospital visit, another scan… with a 4 week course of antibiotics on the cards.

Lots of letters are still pinned to my kitchen notice board with dates and times for future appointments of one sort or another, as both the NHS and I keep a careful watch on my ups and downs, my readings and my scores: monthly bloods; quarterly catch-ups; and umpteen referrals for this and that.

And then the kicker.

Out last Sunday morning, my optic neuritis came back. It’s a really foreboding symptom and pretty debilitating. The sensation is being unable to focus where you want to look – as your eyes and brain play tricks on you. It’s been 18 months since I last suffered this – and then it was my left eye. This time it’s definitely my right hand side – this creates concern that this might be a “new” MS symptom (or relapse – i.e. another lesion on the spine or brain). As I type this, I’m struggling to focus on the letters or to keep them in my gaze. I am losing track of the mouse curser when it moves across the screen.

I liked it that my day to day concerns had become about the minutiae of getting a family routine going again. I hope nothing else is going to get in the way.

It’s three weeks until March – my “MS Danger-Zone”. I wonder what it will hold this year – I’m getting ready to circle the wagons….

 

Happy Christmas

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Out on a bike ride last week, one of my companions lamented (/laughed) at the phone-calls received from his son, who was away at university. These calls would come out of the blue, and would start with teenaged charm turned to the max. After the pleasantries though, the request for a little financial help would never be slow to follow (!). And, of course, the love/curse of a parent is to succumb.

Poor parents – always reached for in times of need. I’m probably guilty of calling mine most typically when one or other of my boys (or me!) are ill – “what medical emergency is it this time?”. It is usually when I’m most seething with frustrations at my MS that I’m sufficiently exercised into writing a blog – I have wondered if this is just my own way, subconsciously, of reaching out for support…. – “o pity me!”

So what disaster is it this time?

59 days post-lemtrada and I’ve just been out on my bike.

I wheezed on the hills – but for the first time in ages, I felt strong. This mild excuse of a winter’s day, had blue skies and not a breath of wind. On one of the longest steady descents I reached forward on to the drop bars, and pushed my highest gear. I stood on my pedals coming round the corner on newly laid tarmac and raced to the next bend. My malaises seemed to melt away.

I’ve now ridden 12,000 miles in the year – few have given me as much pleasure.

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After all the professional turbulence of the last few weeks, and uncertainty, a previous client has just offered me a new contract for next year. As a contractor you rarely get feedback (unless it’s criticism!) or praise… a repeat contract is probably as near as I’ll ever come to, if not praise, at least some level of acceptance. And a financial breath of relief.

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The building work, which has been going on in our house for over 15 months now, is coming to an end.

The damage caused by a burst water pipe a fortnight ago has been decorated away.

As I type, a painter is putting the finishing touches to our new, white gloss door frames.

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A couple of weeks ago, our Ford was written-off, “T-boned” side-on by an errant driver. We’ve then enjoyed the stresses of a front wheel blow-out; and the delights of filling our diesel engine with £65 of petrol.

…but my wife has just successfully navigated a week of smooth commuting in our new car without so much as a parking ticket – at least, not one she’s admitted to! 🙂

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Our Christmas tree stands, freshly decorated, ready for the weekend to come.

My 5 year old, has penned his letter to Santa with a dedicated focus that brought a tear to my eye. He spent his nativity play, back to the audience, showing impressive stoicism as he tried to attach his “King’s” cape, which seemed to have a life of its own.

For his part, my 9 year old, had atop his own Christmas List: “More Independence”. In case the point wasn’t made, this was swiftly followed by: “More Freedom”. So the teenage years approach….

I sit at my desk drinking a fresh, strong coffee. I look out the window at our garden and ponder the fact that our fencing could probably do with a clean.

A job for next year.

Happy Christmas, everyone.

 

7 weeks post Lemtrada Round 2

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My in-laws came to visit last weekend. And nephews, uncles, aunties and all. I never thought I’d be the adult saying this, but, my goodness, those kids really do grow fast. “I remember when you were just this tall….” Toddlers become boys become teenagers, in what seems like the blink of an eye.

As the building work still going on in our house continues (at what feels like glacial pace), removed observers occasionally pop round ‘amazed at all the change’ – “can’t believe how much has been done…”

Our friend nearby has just had her baby. “No way! That’s been 9 months already??!”

This last week, I rode my bike again. And got myself into work.

I heard, “I can’t believe you’re back so soon!”; “You’re so brave to be back on the bike!” To me, it’s been a very long 7 weeks…. and, although the trees must now be thinner, I certainly don’t yet feel ‘out of the woods’.

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Tiredness (fatigue), and indeed pain, are so subjective. My experiences of A&E, being asked to grade my own ‘pain’ between 1-10, immediately prompts the thought that I could be anywhere on that scale depending upon who is asking and why… But, right now, I feel like my batteries are seriously low whoever is doing the asking. Kind comments of “I can’t believe you’re back so soon!”; “You’re so strong back on the bike!” tempt me to retort with how far from easy I’m finding this recovery process.

Yesterday morning, I briefly rode my bike alongside some friends in Bristol. It was a beautiful, blue sky, winter’s day. “…back on the bike!”… Yesterday afternoon I was phoned by my neurological consultant to discuss my latest blood results. [Excuse the technical terms but…] My lymphocytes (which my treatment was designed to target) were still ~zero. My neutrophils (another element of the body’s immune response) were still considerably lower than ‘normal’ and fall within the boundaries of a condition called “neutropenia” – and neither had moved in 7 weeks. And, perhaps most pertinently to the phone call, my overall white blood cell count had actually fallen a further 50% since my first readings taken immediately post-treatment (the overall figure is now 2 vs a healthy range of 4-11). All this information can probably be summarised as:  yes, I may be back on the bike; but I’m still cycling in the woods, not yet through them. The consultant encouraged me to continue to take things easy and to perhaps avoid work (and its germs) for a bit longer…. (I pointed out that, at home, both my boys had been pretty ill last week, off school with coughs, colds, sickness, headaches and vomiting….)

Vulnerable to infection. Sleeping 10 hours a night. But also “back so soon!”; “strong on the bike!”. Health, like A&E pain, would seem to be in the eye of the beholder. I hear of Lemtrada patients who returned to full-time work a fortnight after their treatment… I wonder what they would give their “fatigue score”- and, perhaps more interestingly, I wonder that they would report if they were me? How do they cope when their vision starts swimming and they need to lie down when they’re mid-task – or are they just made of sterner stuff (!)?

<<<Always see your glass as half full – then you shall never suffer from thirst>>>

 

 

 

 

 

Pharmaceutification

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Over the last month I’ve been suffering from symptoms that have had new, usually very long, names; and I’ve been given drugs with new, even longer names to tackle them.

It feels like the pharmaceutification of my body – a new, long name of my own.

 

The problem is that new side-effects and symptoms keep popping up as apparently discrete events – without neither rhyme, reason nor apparent pattern.

I complain about them.

Then report them.

Then the poor health care professional faced with the spaghetti-junction of a post-chemotherapy case, deals with them one-by-one, as only they can.

So far I’ve been prescribed:

metoclopramide – for the nausea that was besetting me for several hours each day – like a bad hangover or seasickness;

prochlorperazine – for the debilitating vertigo which, at its worst, was pulling me so powerfully to the floor that I actually got a bump to the head as I lay down on the kitchen laminate;

omeprazole – for the intestinal cramps which hit me half an hour after food and bent me double, again, (my new party trick), on the floor;

and

gabapentin – for the swelling pins and needles in my hands, which is a familiar symptom to me, but, of late, has been painfully bad at night.

 

Then two days ago, my youngest son fell ill during the night. Cleaning up his sick and washing the vomity bedsheets, cushion covers and clothes predictably saw me hit by a feeling of grim sickness myself.

I took him to the GP worried about his ongoing fever, but the doctor took one look at my grey pallor and started examining me instead. Unusually low blood pressure and the beginnings of a throat infection apparently – so he was minded to prescribe me some penicillin in addition to the co-trimoxazole that I’m already on.

Add in the anticlovir anti-virals that I’m still taking post treatment.

And the daily Vitamin D tablets.

And the regular paracetamols to tackle these ongoing headaches.

And this isn’t where the healthcare stops.

Immediately post-Lemtrada, I was told that I might suffering from “neutropenia” because the treatment had apparently not only wiped out my lymphocytes (as intended), but had also taken out my neutrophils (not intended). So, with some parental help, I was told to rush another “urgent” blood test to Bristol…

which showed a concerning drop in my red blood cell count….

so I did another “urgent” blood test….

which suggested that things were not in fact that urgent – but just needed some ongoing review.

For what it’s worth, my last “urgent” blood test yesterday showed that my lymphocytes were still ~zero – but that nothing new was being flagged…..

apart from my “serum creatine” score, which was 550 (against a normal, maximum of 320). This the doctor simply could not explain.

Oh… did I mention the zopliclone to help me sleep?

Or the optional extras of tolterodine?

 

I have been trying to get out the house – but have been struggling to do so.

I walked around the park.

Last weekend, I “rode” (or “wobbled”) my bike down a cycle path, but my body was too used to being in bed and I somehow managed to pull a calf muscle as I sought to register a walking pace. It was still painful the next day. So I took a couple of ibuprofen.

Take that, body, and add those to the mix.

The problem is that the side-effects of Lemtrada cover pretty much every medical symptom that you could imagine. And several that you probably can’t.

But, of all the symptoms listed above, almost all are actually listed side-effects of paracetmol. And metoclopramide. And prochlorperazine. Gabapentin and Ibuprofen too: as a result, all these drugs, however well intended, feel as though they making things even more messy.

Maybe the doctors should just be looking me in the eyes and telling me to toughen up – but it would take a brave health care practitioner to do that. For them, prescribing another box of pills is probably the safe option, and is unlikely to ever be described as being negligent….. So maybe I should just be toughening up all by myself?: As this MS condition goes on, I realise more and more that its treatment has to be self-managed to some degree.  Each consultation with a doctor becomes an act of drama with two participants -it is not just a one-way discussion with a professional as no one can know “your MS” better than you.

Right now, I want to get these drugs out of my system, get back to work…. and get back on my bike.

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The cycling space race

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The cycling space-race

An attempt to get Tri-bars, Man Vs Snake, TUEs and Rocky Balboa all in one blog.

Professional cyclists have long enjoyed heavily-tailored, scientific performance plans. Training zones, VO2 levels, hematocrit scores and measures of residual exhaustion. Peaking and recovering – anaerobic, aerobic – and lactate thresholds.

These seems a world away from the trundling commuters I follow down the Bristol-Bath cycle-path to work. Rather than aero-fit, lightweight mesh-suits, they wear bobble hats, ski gloves and work-boots. They ride ill-fitted mountain bikes with slow flat tyres; packed lunch rucksacks; rattling, heavy D-locks; and fading & muddy rear lights.

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The cycling lunch club I’ve tried to kick start this year has been a bit hit and miss. Sometimes I’ve been the only attendee; other days there have been 8 of us chaffing at the bit in the sun.

One of my friends has turned up a few times on his off-the-shelf bike (read sporty-looking, but built to be robust, rather than fast). He’s happy to carry the unimposing air of a desk-working commuter, donning a flapping windproof – out for a social chat for his lunch hour. I enjoy his company. And, although a strong cyclist, he gets slightly left behind on some of the steeper hills.

This summer he also set a new club record for a team 30 mile time trial.

Photos of his rides reveal a scarcely recognisable bike, and man. His gleaming carbon race bike, the black frame unbroken by neither decal nor logo, fairly drips with speed; his wheels’ spokes have been replaced by expensive looking solid discs; and the forward pointing, horizontal handlebars look about a foot too low to be comfortable. Even his water-bottle is a strange, streamlined shape, tucked neatly away to avoid ruining his ‘lines’.

His all-in-one skin-suit looks like a tattoo (eyes up, ladies), and his shoes look as though have been wrapped in bright cling-film to better slip through the air. His helmet looks life molten plastic dripped onto his head as he’s entered a wind tunnel. Even his gloves look as though they’ve been painted on.

He knows what all racing cyclists know. That lunch clubs are not there to race. Overtakes on the Bristol Cyclepath en route to work shouldn’t be a cause of satisfaction.

If you want to race, train to race…. then race.

But to race at this level (/his level) doesn’t come cheap. Nor, of course, do these levels of fitness and power come easy.

Consider, though, how any quest for self-improvement blurs the two:

The fairest, truest times are against yourself – same bike, same conditions, from a week before. Or a month ago. Or from last year or the year before – seeing if you can get your body to evolve to the demands you make of it.

For my part, I’ve spent many weeks entering time-trials ridden around Chew Valley Lake – trying to chisel down a faster time, whilst acknowledging the variances in wind speeds and direction, isobars, humidity and so on (et cetera et cetera ad infinitum).

I was enjoying the challenge – and was shaving down my time by handfuls of seconds.

Then I bought some (cheap) clip-on “tri-bars” (these hold you, the cyclist, in a more unbroken aero-position), and my PB dropped by over a minute (out of ~23 total) overnight.

I should have felt delighted… but, strangely, this was the point that my interest in time-trialling began to dwindle.

Progress began to feel like a factor of how much money I was willing to spend.

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Last week I watched a documentary called “Man Vs Snake”: one man’s journey to set a computer high-score, not just his own PB, or the best ever score on his computer, but the best score ever. In the whole world. Out of everyone that had ever played the game. And, I suppose, this is the crux of these quests for self-improvement: at some point, you wonder how your “self-improvement” compares to everyone else’s. For these are the arenas where glories are won – in bird’s nest stadiums, public leaderboards and trophy rooms, not within mental notes-to-self regards week-to-week differences between social TTs. And the problem with these public arenas is that this is where ‘others’ can spend their money on all the lighter-weight tri-bars; solid disc wheels; and molten-plastic-dripped helmets.

And in a professional cycling world, willingness to spend that money becomes willingness to add all those other marginal gains. I echo the above: to race at this level doesn’t come cheap. Nor, of course, do these levels of fitness and power come easy. Pros have to tick-off the latter, so that they’re being efficient with the former. Neither this blog (nor it seems the whole internet) is big enough to nail down the moral rights and wrongs of Bradley Wiggins’ TUE steroidal asthmatic injections – but if the “kit” isn’t the same, if the “base lines” aren’t aligned, how can efforts at self-improvement be fairly compared? How can I be expected to keep up with that guy riding a carbon space-ship?

Last winter, amongst my cycling friends in Bristol, a new device was in town.

As the roads freeze over and the rains come down, there has always been a retreat to indoor spin classes and garage-based turbo trainers.

But this year the craze seemed to explode. Indoor bikes can now been linked up to laptops and the internet, and riders can “race” friends, avatars and other assorted pixelated AI-creations around any famous course or climb you could mention.

My friends did so, and my friends got fast.

They could assess the threshold levels, heart rate zones and suffer scores that were once the preserve of the pros.

And it worked.

Meanwhile, I slowly rode my commuting bike with its knobbly tyres, in the rain. With my pins and needles.

For my part though, when the winter skies were clear, I got to see Orion’s Belt in the early morning darkness.

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Some of the scenes from Rocky II still stick with me from my child-hood. (Paraphrasing from imdb.com) Rocky’s boxing-foe, Drago, scientifically uses high-tech lab equipment, steroid enhancement and has a team of trainers and doctors monitoring his every movement. Rocky, on the other hand, throws heavy logs, chops down trees, pulls an overloaded snow sleigh, jogs in heavy snow and treacherous icy conditions and climbs a mountain.

The film leaves the viewer in no doubt as to the romance of the two approaches.

But maybe, amidst all the other suspensions of disbelief you’re asked to hold for their final fight, the fact that Rocky ultimately actually triumphs despite the above is perhaps the least believable. But the viewer knows that it is Rocky that holds the soul. Not the science.

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Back to CyclingWithMS.

It has become cycling when I can.

When I can, I cycle fast.

When I can’t, I am relieved I can still ride my bike.

I race myself on hills where I know my PBs.

I fight my MS when it tells me I’m weak.

And when I race new found friends at lunch-club as they don their heavy commuting shoes, billowing wind-sheets and cyclo-cross bikes, I don’t forget who my real race is against.

Winning is being there, on my bike, for another day.

When, like now, I’m off my bike, I do need to acknowledge that there are bigger things at play, but I can’t escape the feeling that I’m getting spat out the back – and life is so much easier when you’re cruising at the same speed as the pelaton surround.