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.

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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….