Remittance

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>>

Putting March to bed

 

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

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

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….