As good as it gets

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Four months post Lemtrada.

No spells of vertigo for over a week.

And, today, a bike ride that was as good as it gets. Clear, windless, blue skies. Cold, fresh air; and me feeling strong, fit and happy to be alive. Those weeks and weeks of grimacing through stormy winds and tough winter rain; weakness and occasional dizziness; all felt worthwhile. The bike felt fast and light; I felt free and high on adrenalin.

This is why I want to cycle through MS. And, touch wood, long may I do so.

Residual MS symptoms do persist… but you can’t have a party without a few guests. If this is life, then they’re welcome.

https://www.strava.com/activities/501956704

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A mixed bag. The paradox I can’t articulate.

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Last year I was bed-ridden for 22 days. There are many shades of grey – but I believe that the clear majority of these were MS-related. I also had 2 bed-ridden weeks off work after my Lemtrada treatment; not to mention countless (ok – I did count – 9) hospital/doctor appointments; and, now, monthly blood tests. However, I am still self-employed, and am currently the only income-earner in my family. So, after promptings from an internet message board, I started to looking into what disability benefits might be available should my condition deteriorate: disability living allowance; incapacity benefit; and Personal Independence Payments (PIPs).

“PIPs” appeared to be the most pertinent to my position – designed to help those who require care during periods of disability or chronic illness. Qualifying as being appropriately “disabled” is the first step; but, to my surprise, alongside cancer and Aids, an MS diagnosis automatically qualifies you in this regard (who knows the politics behind this – Parkinsons (to give one example) is not on the list). You then have to be assessed against a list of tick-boxes to determine whether or not your condition qualifies you for financial help. But the concept was making me feel edgy: I had visions of an undercover Panorama report sensationally revealing the fraudulent nature of my claim: “This work-shy bed-sitter missed 22 days of work last year… but also cycled almost 12,000 miles, entering bike events with reckless abandon and racing up hills across the South-West, laughing with friends and having a wail of a time.”

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I actually started writing a blog last week but never finished it. Last Thursday I was on something of a high: I was feeling as strong and fit as I had done for months. I’d had two hugely enjoyable, fast days on my bike – and felt an inner reserve that I hadn’t had since mid-summer. My blog was to have been laced with tentative optimism; and a growing belief that my treatment last year was already doing its good work.

Then I had a real set back last weekend. A family wedding turned out to be something of a perfect storm for my MS: lots of standing up; an alcoholic drink; then as the disco started, echoing noises, lights and blurs. My neurological system just couldn’t cope. A bit of light-headedness became dizziness; then nausea and a growing sense of vertigo. I went pale and became glued to my seat. Physically I could walk; but my mind wouldn’t seem to let me – like I was refusing to let go of a hand rail.

After a solid night’s sleep, the noises in a coffee shop were again too much for me: I had lost the ability to differentiate between sounds – background conversations became all I could hear and my family’s voices became disorientating; spinning my senses and my balance.

But the next day I felt largely better.

And today (Thursday) I seem to feel fine.

So a week ago, I blasted my bike up one of the steepest climbs in Bristol; and rode 70 miles into a furious headwind and rain just because I wanted to.

A few days later, my wife was telling me just to put one foot in front of the other in order to walk.

So does that make me “disabled”? A cyclist? Neither? Both? Or – like MS – some in-between truth lost in a hundred shades of grey which, one day, seem half-full; the next day, half-empty.

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Footnote:

My research into a “PIP” claim was an interesting one…. although my MS automatically qualifies me as being “disabled” the number of days in a year for which I require “care” is not sufficient for a claim. Claimants have to require “care” 175 days a year to qualify; if they do reach that cut-off,  only then are they then assessed for the seriousness of their condition.  These “tick boxes” are an interesting morale debate: a claimant could be horribly disabled 174 days a year but not qualify; whereas a claimant who requires supervision the whole time (but who never exhibits any symptoms at all) would qualify (e.g. if you had epilepsy and ‘might’ suffer a fit at any time; you could qualify because supervision might be deemed as necessary 365 days a year).

So here’s hoping that I never qualify…