Hill reps

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I’m making some big cycling plans for later this summer – some serious undertakings for adventure. I’m planning to do what I love doing: getting out on my bike; travelling to new places, on new roads, through new landscapes.

I hope that my blog will soon see a steady drip-feed of happy ride reports as the season unfurls, so more on this to follow…. I hope.

However, I know that I can’t just pursue these dreams on a whim. Preparation will be ‘all’: logistics; equipment and, of course, body. ‘Preparation’… then very much keeping my fingers crossed that my MS remains locked in its box.

Of course, in many ways, cycle-touring is what I’ve already spent years gearing up for: as I’ve commuted by bike and entered events which have dangled goals just beyond my easy reach. And I’ve long sought to explore new roads and find new hills, be it on my own, or out with clubs or friends. But the time is now nigh to train specifically for this summer’s miles, uncertain weathers and rugged terrains; and to get ready to ride with the inevitability of the unexpected. So, to this end, I’ve been doing some “hill reps” – i.e. finding some hills then riding up them on my bike.

As any cyclist will attest, it can be a tough medicine. But I’m of the opinion that every such obstacle surmounted now, can only stand me in better stead for the future.

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On the 23rd June, I started early on my bike – the summer solstice. Even at 5am, it was already uncommonly hot – the previous, truncated night I’d spent tossing and turning beside the biggest fan I could find.

Because I wasn’t planning to venture far from home, my bike was as light as it could be: race wheels; new tyres; and even a cleaned cassette. I was in shorts and a T-shirt. If I was to be climbing hills, I couldn’t have done it any lighter.

So I sought out some gradients…. and rode up them.

I rode up hills, paused for breath, then turned around and descended back down again.

The pain I’d been having with my right foot had gone. I had only the merest hint of MS pins and needles.

I felt good.

 

The ascents ticked past. The first became 4, then 5. Then I began to lose count as I lost track of water breaks, and stops for food.

The temperature was slowly rising. And rising. It hit 20 degrees when it was still early morning.

I tried to drink as much as I could – and I soon realised that dehydration would become my biggest impediment – but the drip-drip of my sweat soon became a flow, and salt began to sting my eyes. My pauses at the summits became longer, and my recovery breathing deeper.

I knew I wasn’t drinking enough – but couldn’t manage to get more liquid down.

The thermometer reached 33 degrees.

 Tiredness began to creep in. Firstly my calves, then twinges of cramp in my thigh. The pressure points on the balls of my feet and palms of my hands began to hurt in the heat. I was beginning to get a dehydration headache.  But I chose to carry on: once a year I choose to ride to my max until I’ve got nothing left to give, just to see where I am. Today was going to be that day.

Another ascent to the same summit. Back to the same starting point again. The Grand Old Duke of York.

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 I recalled a memory from my childhood when my mother would read me a book of fairy tales (” fairy tales and fantastic stories”). I always found them unduly spooky, and a bit unsettling before bed. But I couldn’t help but be enticed by the sensation of eeriness.

As I started another climb, I remembered tale of a goblin, tempting a young girl to the magical “goblin city”:

“Short or long to Goblin City?
The straight way’s short
But the long way’s pretty…”

I found the image of the goblin unnerving, as was the beat of this repeated rhyme.

As it turned out, the girl was so beset by indecision over this choice that the tale ended abruptly with her invite removed

I turned back down the hill again.

Back to the start.

The long way round

I mulled over that I would have chosen the long, pretty way. Unless I was late for something important I guess.

A straight line through life would feel no more than a race to the end. Without the hill reps

I was getting more and more tired as I climbed my bike back up again.

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I had known when I started that the heat of the day would be my biggest impediment, but I just couldn’t do enough to counter it.

I was beginning to feel seriously dehydrated – I began to wonder if I was dangerously so. I had drunk ~8 litres of water – and hadn’t gone to the loo once. It wasn’t enough.My ride began to feel as though it was almost done

I was low on energy, but stopped being able to get food down. I tried sucking on some boiled sweets as I rode but had to spit them out as my body refused. I began to feel pretty sick

What was this all about?…. Setting the bar for the summer.

Putting down a building block.

Seeing where I was, and where I could go.

 

Eventually I stopped my bike for the final time that day. My hand was starting to cramp up on the brake levers.

Tired.

I had done 8,950 metres of climbing.

Slightly more than the height of Mount Everest

When I got home, I lay down, both my legs pulsing with cramp. But nothing was going to stop me drifting off into the deepest sleep.

 

The long way round indeed. And, like life, certainly not straight.

I’m really happy for that to be my choice.

 

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Remittance

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Two years ago my MS felt out of control.

New symptoms were appearing every few weeks and, by late 2015, my neurological consultant had accelerated me onto a course of “Campath” chemotherapy.

I had a second dose in October 2016.

It had become difficult to separate the side-effects of the drug from further MS activity but, in summary, it’d be fair to say that my health had been patchy over the intervening 12 months.

 

When first diagnosed, of course the hope was that my variant of the condition would be towards the less aggressive end of the scale. This basically translates into a “relapsing-remitting” type (i.e. one that dissipates (or remits) between bouts (or relapses)), right at the benign end of the spectrum.

The very best possible scenario would be that my MS actually remits entirely. There have been cases where patients diagnosed with MS have gone on to live long and healthy lives with no further interference from the condition at all, but the fact that I had already suffered so many relapses, and had so many visible ‘lesions’ on my brain and spine to show for them, makes this less likely.

The law of averages dictates that 85% of newly diagnosed patient in their 30s (i.e. me) will have one of those relapsing-remitting types, likely to appear, then diminish, over a period of years. And I’m afraid that the most likely overall trajectory is one of deterioration: 65% of patients become “secondary progressive” within 15 years of diagnosis – this basically translates as a “sustained build up of disability” with little or no recovery between relapses.

My relationship with my MS is now one of seeking to avoid this mathematical probability; to avoid the occurrence of relapses; and to rejoice as much as possible in the fact that I’m not there yet. And, of course, fingers crossed, might never be.

 

I don’t know the exact reason why, but, June 2017, I’m certainly feeling much, much “better”. My MS symptoms feel like no more than murmurs, and I’m recovering from the minor bugs of everyday life within normal timeframes, rather suffering from them for weeks at a time.

Statistically, this is probably no more than where I should be: a period of remittance in between relapses. But I can’t help but be more optimistic than that: I’ve now got 2 bouts of chemotherapy under my belt; and have now been adhering to a much healthier regimes of MS-Diet and careful sleep patterns for 30 months. Although I remain mindful to the false dawns of ‘hope’, I can’t deny myself the excitement of feeling so very improved:

I would judge that I have been as healthy as I can remember for perhaps 8 or 9 years.

I am pushing niggles to the side – and I’ve been out cycling; working full-time; painting garden fences; and mowing the lawn. All things I have stopped taking for granted.

I’m lining up big cycling plans for the summer and have been getting myself ready, body and bike, for adventures to come.

 

I gritted my teeth when a stress fracture in my right foot took 6 weeks to heal; and I continue to do so now with an issue with my right knee. Frustratingly the pain there is being caused by a titanium pin inserted there many years ago- the surgeon is reluctant to do anything whilst my post-chemo immune system remains low: my latest blood results still show my ‘lymphocytes’ (read: infection killers) struggling at 0.5 against a ‘normal’ minimum of 2.

So I ignore my arthritis, cope with my grumbling optical neuritis and aim my bike at the horizon. As fast as I can.

 

65%. 15 years.

 

I chase more time. I chase life, perhaps always thinking that I might find it at the top of the next hill.

I feel pretty tired today but I’m planning a quick spin at lunch.

Despite the drizzling rain, I don’t want to risk missing it.

 

<< drink them in, for the gifts of life are why we are all here>>

Potential stress (fracture)

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One barometer of my MS that I’m currently reflecting on, is the scope of my “future gaze”: whether I have the capacity to look at future months & years, or am just focussing on the next day. Everyone will empathise with how your world view and forethoughts shrink during periods of stress or illness (I’d have thought that everyone with children will empathise with that sensation of just trying to get through each day, juggling water and herding cats).

To some extent, I have been living in week-long blocks for the last couple of years. I’ve been making plans for each weekend, but being a bit tentative on a grander scale. My confidence had been a bit dented when I had to drop out of a long planned Alpine Cycling trip – letting a friend down at the very last minute as I tried to work out what was going on with some grumbling MS symptoms – and I was finding that pre-planned weekend plans were proving to be the source of anxiety, rather than excitement….. But this year, I do think that things are definitely evolving (for the better). I’ve been booking summer holidays, both en famille and solo – and have (somewhat cagily) been letting my optimism grow. Over the next fortnight I’ll be dipping my toe back into the water of a night out in London, and a weekend playing golf with some old friends; although I approach these “MS-tests” with trepidation, there is also the definite emergence of a new confidence.

Reading between the lines above, you’ll see that I’m currently feeling pretty good regards the various challenges of my MS – a “block” of time that I’ve been awaiting for quite some time….

So – to use what I believe is the technical term – I cycled the hell out of April.

I raced up a hill or two with my friends at “lunch club”; made new friends climbing up to the ridge and viewpoints of the White Horse above Avebury; did a 200 mile ride up to the “Heart of England” (and beyond); and enjoyed a weekend away in the stunning hills of Southern France.  These latter 2 days certainly hit the “cycling sweet-spot”: a friend and I toured the “gorge du verdon” upon roads that clung to precipitous cliffs and hair-pinned through tunnels and caves; up to ski-resorts and mountain-top expresso-stops; and down to cobbled French villages, where we filled our water bottles in age-old fountains. We even fitted in a “gastronomic” 7-course dinner in our remote overnight stop-over – our ravenous 200km-cycled appetites were given a lesson in patience as ‘amuse-bouches’ followed one bite-size course after another. “Encore du pain, s’il vous plait?!!”. But ageing, arthritic and MS, I can’t just click my fingers and do weekends like that – 400km and almost 30,000 feet of climbing required some serious base miles under my belt: these were the archetypal “summer smiles” earned by “winter miles” – and a labour has been necessary to bear these fruits:

April started with my slightly murky, MS-related left foot ataxia. I’m pretty used to the symptom now, and wouldn’t even say that it was hindering. But as I started peddling some greater miles, I started getting muscle strains dotted around my left calf as I increasingly favoured a ‘pull’ of that pedal, rather than a push. A tendonitis in my left achilles started to niggle more and more. I started to consciously favour my right foot and the hints of cramp, then strain, transferred over to my that calf. A week later, as I was finishing off my ‘200’, my right foot started to ache more and more as my pedal strokes started to rely almost entirely on a ‘right foot push’. The next day, on my commute to work, the pain in my right foot started getting sharper, a couple of slipped gears (when the pedal suddenly slips/drops dramatically) hurt. Another trip to Southmeads hospital and it seems that I’ve got a stress fracture in my right metatarsal. Talk is of 4-6 weeks rest. I contemplated this as I cycled home. [I recited that song, my experience confirming the lyrics, “hip bone connected to the thigh bone… etc etc”. One body, one holistic system only as strong as it’s weakest link]

So, another little hurdle. But – let me check – my “future gaze” barometer still reads well. My thoughts and ambitions are still looking at the summer and beyond – so all is well. Roll on.

Putting March to bed

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March started with my MS grumbling away.

Quite how much of this was in my head is difficult to say – but for several years I have had MS relapses in March, so I was watching the month like a hawk.

And although the saying goes that a watched pot never boils – this rather misses the fact that, if you’re watching a pot carefully, you can see every little change in the water’s surface, and every little ripple is a potential simmer.

I had tiresome pins and needles – especially at night – and was struggling to focus on my work, and on the screen I was meant to be working at.

Both possibly just indirect symptoms of a wider anxiety and nothing to do with MS at all (?) – who knows….

 

On 6th March I rode in a local bike race, the “Chippenham Hilly”. The headline news was that I finished – and afterwards felt a nice euphoric glow of vaguely-competitive endorphins (rather than the blurred vision vertigo I had feared).

The fact that I finished 28th, I must face, is of no interest to anyone except for myself. I’m going to have to consign it to my own personal memory bin (alongside that time I holed out a 7-iron in 2008; and scored a first time volley for Cockfosters FC under-16s, in what must have been sometime in the previous century). Never to be mentioned in polite company again.

 

Then March started to take its usual turn.

Over the next fortnight I had 5 days off work.

I moped about complaining of vertigo and incessant tiredness; and towed my same old line about my vision “not feeling right”.

I started going to bed earlier and earlier, having more and more broken night’s sleep, with cold sores and buzzing legs.

 

Towards the end of the month, my project at work finished and I saw a light in the tunnel – a week of pressure-free work. My little piece of the project-jigsaw had been delivered in time (just!), and it was now up to more senior bosses to discuss and present, whilst I kept my head-down – my job description became largely not getting in their way.

Because of this, or just a pleasant coincidence of timing, I almost immediately started feeling better.

Certainly the correlation has made me re-visit the extent to which I exist under too high a level of “normal-stress” – a pressure release at work seemed to trigger an improvement in my condition almost overnight.

Any adult, any adult with children, or any adult with MS would say that life can be pretty tiring at times – I’m afraid that work isn’t quite an optional choice just yet.

 

Anyway…. I immediately started riding my bike to excess – with growing delight that I seemed to be fit. Healthy. And, quite suddenly, MS free.

So, although there had been a dodgy fortnight, looking back at it now, I can say that this is the best March-health I have been in for over 7 years.

Of course I don’t really know why. Luck perhaps? But I’m realistically optimistic (if that’s a term?!) that I seeing some of the benefits of my latest chemotherapy treatment from last year. I very much hope that’s the case.

 

Certainly the last week or so has been hugely buoying, but one irony is not lost on me:

As I rode my bike last week, I was once again going to bed early.

And my legs were feeling pretty fatigued.

And, as it took a while for the adrenalin of those rides to wear off, I wasn’t sleeping brilliantly.

But I was really, really happy.

Maybe “good” and “bad” are not so removed, just dictated by the eye of their beholder.

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….