“You’re proving irritating difficult to kill, (Mr Bond)”

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In Chuck Palhniuk’s Fight Club, Tyler (played by Brad Pitt in the film) accosts a terrified high-school drop-out and threatens him with a gun, [“You are going to die, Raymond”]. When satisfied of his victim’s fear, Tyler persuades him to return to his studies and then lets the man go: “Tomorrow will be the most beautiful day of Raymond K Hessel’s entire life. His breakfast will taste better than any meal you or I have ever tasted.”

The last few weeks, since my MS symptoms have subsided have felt like the coming of a second summer. A (patchy) series of dry-ish days has arrived in Bristol – and I’ve been out on my bike. I’ve not only felt good, but felt happy. Pins and needles in fingers and toes barely a mild inconvenience. I’ve felt… intensely free.

I have cycled to my in-laws (twice); and back. I rode an unexpectedly competitive hill climb time in my club’s monthly competition. I got sunburnt. The mornings felt light. The nights short. I chased my boys: my life has felt like it was back to what I wanted to be doing.

I have now lined up the next critical stage in my offense against MS: during my latest appointment with the neurological consultant we decided to book me in for a course of “Lemtrada” treatment in October. There were several drug choices available – the decision is to balance effectiveness against side effects. Lemtrada, within the confines of the NHS, is probably the most nuclear of options. It’s (mild) chemotherapy served cold over a week long period. It’s designed to “reset” the malfunctioning elements of an auto-immune system – but it’s a careful balancing act. Choosing the treatment is taking something powerful into your system that can knock other processes as well – perhaps most commonly, your thyroid. So it’s not something to be taken lightly (and I’m not). The list of side effects is both intimidating and long. The consultant had to be convinced I was serious.

These last few weeks have been the best of 2015, by far. But then, today, as I cycled on uneven surfaces and dirt tracks, the same vision issues that had plagued me early this year returned. Disappointingly. It’s still there, inside me.

https://www.strava.com/activities/335010510

I have anthropomorphised my MS. I imagine it (him) like a pantomime comic book super-villain – dastardly and cunning; never to be trusted in his deceit. My own arch enemy. I thought I’d shaken him for a while – but now I see that he’s still clinging on by his finger nails. Conniving. But today I smiled to myself: he may think he’s weathered the worst, but my defences so far (a new diet, a few steroids) will feel like mild irritants compared to the Lemtrada Bomb that he’s going to be hit with this autumn. Poor him. Perhaps it’s even overkill – even comic book bad guys elicit pity when they’re beaten.

So is the title of this blog being said by me, or to me? Maybe I just like the phrase. I hope my arch enemy doesn’t have the breath to speak so many words. If he’s reading this he should be warned: I’m not only saying it with a smile, but with a playful accent as well. I have a plan, and he doesn’t yet know it.

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Getting back on track

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For me, winter has always been a season to endure: the dark; the wet; and the cold.

Summer is the light at the end of the tunnel.

The seasons change, the clocks move on – and, by the time that june arrives, the sun is shining and my moods are lifted. The skies are blue. Over the last 4-5 years (what I know now to have been MS relapses) have moved in time with this, almost like clockwork. My worst bouts have always coincided with those dark months – typically peaking in March and October.

This year these bouts can now be seen to represent a tangible ailment – MS – and it was with this in mind that I met with my neurological consultant last week. The last time I saw him a month or so ago I could barely walk into his room. I was depressed, ill with MS and rundown after weeks and weeks of suffering interrupted nights’ sleep. This time, I cycled to the appointment in good health. Given this, it felt odd signing myself up to a course of “Lemtrada” treatment for later this year. This is a mild chemotherapy designed to modify my misfiring immune system. It will involve a week in hospital; probably plus several weeks of illness afterwards (and the very real risk of some serious side-effects). But in making the decision to go-ahead I only had to think back a couple of weeks to the day I lost the ability to walk. I might be feeling good now, but there’s something going on in my body that I need to take action to stop.

Today, I have residual pins and needles in my toes and fingers; and some slight numbness and hypersensitivity in my legs – but I feel good to go.

I entered a couple of bike races.

Back to Time Trialling

On the 14th June I rode in my club’s annual 50 mile Time Trial. My headline should read “Great News” as I had absolutely no issues with my vision – which have plagued me this year – and this should be the only news that matters…. but somehow I find myself a bit disappointed by how slow I rode (I’m not sure how I’ve so lost sight of what actually matters?!)

Steady miles ridden this year had proved no substitute for actual training – and I clocked 2hr 18min on the fairly lumpy course. I think I was probably the only rider on a standard road bike, but I came rock-bottom last in my category – miles behind the guys with their aero time trial bikes and posh pointy helmets. But I had ridden the 50, and my limiting factors were typical for a cyclist; not an MS sufferer. Cramps, sore back, tiredness; rather than vision-loss, the loss of feeling in my legs, or an inability to move my fingers.

Three days later, I rode in my club’s 25 mile event. The conditions felt fast despite a strong crosswind. I got my head down, rode flat out and took over 2 minutes off my PB.

 

From my nadir springs a 600km birthday

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nadir

Def: the lowest or deepest point; depths
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When things are not going to plan one must always be hoping that a “nadir” has been reached: by definition, if this is the case, things are about to get better (or strictly, I guess, end completely – which is less desirable!)
Of course, a characteristic of life is that ‘personal nadirs’ are only identifiable with hindsight – at the time, there is always the risk that things are just going to get even worse.
During these early stages of my MS I’ve tried to continue to cycle. Continued, in the most part, to work. And to live family life. As a barometer of my refusal to let MS knock me off my course, I’m still aiming to ride the Paris-Brest-Paris bike ride in August this year – the last qualifying event of which was this last weekend – a 600km ride starting from ~Manchester. You would have thought a 36 hour bike ride would be the subject of the “nadir” in this blog’s title: my body would be getting pushed to an extreme; I’d lose a night’s sleep; my muscles would be exhausted; and the issues I’d been experiencing with my vision would be tested. But, no; my lowest point had been a few days earlier: the first time I thought that maybe MS was going to beat me; a moment that made me realise that whatever drug choices lie ahead of me I couldn’t underestimate the impacts of this condition; and that I had to throw whatever I could at it.
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The low
It hadn’t been a good day. My MS symptoms – muscle ache, pins and needles, bladder control – had not been good. I discussed my low mood with my wife just before my boys arrived back from school and she suggested that I take refuge in a cinema to avoid the stresses of the evening. But as I sat watching a film the aches in my leg muscles seem to grow in intensity until they  were really pulsing with exhaustion. Sitting down didn’t seem to give relief enough – I needed to lie. I still needed to relax my legs more… I needed to curl into some sort of foetal position, as my legs started yelling with extreme fatigue. The film on the big screen went on – bangs and explosions in the dark – as my MS pushed me into the ground. I was marooned in the movie theatre; I couldn’t seem to walk. I had sudden and immediate need to go to the loo but couldn’t move. I decided then (if not already) that I had to get onto my Lemtrada drug treatment as soon as I could.
This was as I low as I’d been.
But this was also as low as I got that week: my nadir.
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The high
On the Friday night I drove up to Manchester. Bad pins and needles. Feeling tired – and grumpy. I also had a sore throat and a nasty head cold. But when I woke up to start the bike event on the Saturday morning the fog seemed to have cleared. As I set off, I didn’t dare even mention it – didn’t want to tempt fate – but barely any pins and needles.
Over the last 4 – 5 years previous bouts of (what I now know to have been) MS relapses similarly cleared – with dramatic suddenness, for no apparent reason, one morning upon waking up.
The same appears to have been the case here. I rode my bike all day with no urgent toilet stops; without numb arms and hands. With no vision issues.
For the first time in 3 months I felt almost no MS symptoms.
The sun was shining. A tailwind blew. The countryside was a lush green and we rode until we could smell the sea.
It was my birthday.
I was riding with my friend. We saw the sun set on one day, then rise on the next.
Wonderful.