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.
Cycling with MS 