I’ve been taking “Gabapentine”, which seems to have reduced the painful symptoms in my legs and feet. The incessant pins and needles that I’d had for almost a month have improved from pain to mild discomfort. It feels as though I can walk again without having to adopt hobbling pigeon-steps and suddenly this whole bout feels much more manageable. Numbness, hypersensitivity and the occasion spasm, especially in my thighs, remain, but these are completely bearable. My main concern remains the distortions to my vision, which have now crept off the bike and into my daily life. Several times this week I’ve been struggling to focus my eyes at work. There is the possibility that these latest issues might be a side-effect of my latest drug (the list of potential side-effects includes pretty much every medical condition you could think of).
I await my appointment with a consultant.
Buoyed by this improvement in my symptoms and some stunning, sunny weather in Bristol, I’ve been out on my bike. A few rides this week have been an absolute joy – clear skies, dry roads and longer days. On Wednesday, I rode out to nearby lake to meet some of the riders from my club and the route had amazing views across the city, with hot air balloons in the sky. Beautiful – and as good as it gets.
On the way back from that ride, the fog around my leg muscles suddenly seemed dissipate. It had been there for weeks – but then just disappeared in a matter of seconds. I can pinpoint an exact moment it happened. The sensation almost boosted me forwards – as if muscles that had forgotten how to work kicked back in. Goodness knows the neurological reason for this dramatic change, or an apt word for my reaction… maybe “elated” or “exhilarated”. I had a spurt of excited adrenalin that would keep me awake that night. For the first time since probably November I felt good again – as if something inside me had been unlocked and I was working again.
I was wary the next day and careful not to overdo it. If that was the end of this bout, that was easy.
On Friday, of course, I woke up and the pins and needles were back. My whole legs felt dead again. The bout had not yet given up.
There’s a scene I like from the film Batman Begins: Bruce Wayne is in a muddy gaol and is being confronted by an increasing number of “bad guys” that he has been locked up with. He battles to fight them off until the prison guards drag him away, “for protection.”
“I don’t need protection,” he says.
“Not for you,” the guard replies. “For them.”
I want MS to regret being locked up with me.
That day I cycled down to work. With each push of my pedals I envisaged forcing my MS away. Each movement of my legs was another blow landed.
When I got to work I decided not to stop. I just carried on.
I sped up a hill called “Clarken Combe” and only at the summit did I stop, heart racing. (“A really nice day,” I thought.) I felt both euphoric and very bad; a mid-point compromise between the two would not tell the tale. Maybe it equated to a bloodied, but victorious, pub-brawler the moment the police cars roll up.
But my legs felt no worse for the rest of the day. And neither did my eyes. My natural urge was to go out and fight MS again; so, after work, I rode up Clarken Combe a second time. With a tailwind behind me, it was probably the fastest hill climb I’ve ever done on a bike.
<You haven’t even touched the sides of my fight, MS. You’re going to regret being locked up with me. For the rest of your life.>
Upon diagnosis, I had bought Roy Swank’s MS ‘Bible’ – “The MS Diet Book”. The ‘bible’ analogy seems an apt one, as its devotees are almost religious with their fervour, as are its detractors.
Swank writes [edited], “It is difficult for people who have been active all their lives to slow down. To have been driven all one’s life by some poorly understood mechanism in the one’s body, and then be asked to cut the speed by a half or two thirds is asking a great deal. At times the patient is like an automobile with less than one gallon of gasoline in the tank. He or she can travel fast for but a few miles, then stutter and stop Pace yourself. Don’t rush. Listen to your body and very carefully monitor and control your desires.”
Much of his book that describes some of the issues, especially the early symptoms of MS, feels as though it has been written personally just for me.
I need to learn. And to adapt.
Maybe fighting MS is like having a fist-fight with the sea. I have always liked the urban myth (?) about the Geordie dock worker who, to prove his toughness, used to try and brawl with 200 tonne frigates as they rolled down the launching ramp into the sea.
I need to realise that there are days when I need to lie in wait. Pretend to be swaying on the ropes – so I can better beat my foe tomorrow. Pulling back from what I’ve always done, what I do, is going to be the hardest thing for me to do.