CyclingwithMS: of course, “cycling” and “MS” are not the only things in my life, but, last week, they certainly dominated – and, in their different ways, they dished out the highs and lows in extremis.
Sifting through all my thoughts and emotions from the last 7 days seems to demand a considered blog to try and get everything into perspective, for it was a fairly extraordinary time.
Rewind to last weekend and I was under the thumb of MS.
The (self-diagnosed) “relapse” I’d been suffering was beginning to fade – as historically these periods have tended to after ~8 days – but its last residues were still fairly suffocating. Over that Easter Weekend of socialising I thrice had to interrupt mealtimes to lie flat on wooden floors, overwhelmed by vertigo.
I still seemed to have little, or much reduced, control over my left foot – which seemed to curl or drop on its own accord – and I felt weak and tired, stuck in some sort of permanent post-viral fog.
My contract at work had just come to an end – so I’d formed an elaborate plan of cycling / admin / and interviewing/meetings for the week ahead. On Sunday, as I fell deeply asleep in a cinema, this all still seemed like a folly and the dark tendrils of resignation seemed to be spreading.
The advice to MS patients experiencing “relapses” or “MS fatigue” seems to be to take things as easily as possible. Rest. Sleep.
I quote below from the MS advice I was handed upon diagnosis:
“Periods of fatigue may develop quickly, and apparently without cause, and last for days and weeks, but rarely longer. During these periods patients are generally weak and may find it difficult to get out of bed or do simple chores. These spells of exhaustion usually lift or disappear suddenly, leaving only the underlying persistent fatigue.”
[….]”The only effective treatment of fatigue in Multiple Sclerosis is rest, ideally by lying down. Rest by sitting is less helpful. If the fatigue is severe, go to bed for several days.[…] When a patient overexerts frequently or for long periods, and fails to allow sufficient time for recovery, deep fatigue may be prolonged.”
These advices seem to only partially tally with my own experiences. I can only go with what my body does (/has done) and my experiences of these debilitating relapses are that, after the week or so of being bedbound, I can then back to real-life, albeit at a much reduced pace. I grimace badly for another 3-4 days but things seem to continue to go in the right direction whether I then continue to rest or not.
A big turning point for me last week was on the Sunday morning when a dose of prochlorperazine dramatically arrested a bad bout of vertigo. I went from lying, prone on the floor and pulsing with exhaustion, to robot dancing with my son. It made up my mind that I would get back on the bike the next day, albeit armed with a bag of drugs.
So Monday started with me rolling my bike out of my in-laws front drive. In the pouring rain and wind of Storm Katie.
To say that my legs felt empty would be an understatement – I didn’t have enough strength to push the pedals to get me out of their drive (which is quite some hill) – so I walked my bike, slowly, to the top.
I rolled down the hill on the far side, acutely aware that my balance wasn’t all that it should be, and that the roads were hellish slippery.
This was no good, and a recipe for a crash, so I took some prochlorperazine and carried on very slowly.
The issue with my left foot was, well… an issue. My solution was to put all my effort into my right leg then, once I had built up some momentum, I’d allow my left leg to join in a smoother circles of rotation. This felt like it would cause issues in the future but I’d deal with those in time.
I rolled downhill and saw the sea. No one else was around at 7am on an Easter Monday. It was a glorious, deserted windswept seascape and I thought that, maybe, the day would be ok. In fact, I knew it would be. I would make it so.
By Tuesday the ball was rolling. I was growing in confidence that I could manage the vertigo with drugs…. but the exhaustion and weakness was harder to gauge. But I was minded to carry on, pacing it ever so carefully. Tuesday’s test was the cold. It started near freezing. I rode over the exposed Severn Bridge with a friend of mine (him doing the towing!), through 2inches of hailstones. I’d already ‘burnt’ my morning’s prochlorperazine tablet – so the bout of vertigo that hit as we arrived in Wales was a true concern. I wonder if he really knew quite how close I was to having to lie down (in a puddle!!) – I surprised myself how articulate my voice still sounded as I swirled with confusion – but I think the biting cold was a big factor too. I (somewhat illicitly) took another prochlorperazine and 5 minutes later things seem to settle…. of course, I then immediately got a puncture on the next descent, which had to be changed with cold, fumbling, wet fingers.
Those were tough moments – and as close as I got to calling the whole week off.
Some more over-the-counter medication got me to Cardiff – past the enormous Tata Steel Plant that has been so much in the news this week – and, one jacket potato and beans later, the day had stabilised somewhat. I felt really weak – and never more than a sugar cube of energy away from sleep…. but slowly I was starting to have fun.
It was a tailwind home.
On Wednesday and Thursday I rode too.
Through 2 brutal, headwind hailstorms. And under blue skies and sun.
By then I was on top of the vertigo, so my focus could slowly shift to the next limiting factor – where lop-sided cycling was clearly emerging as next most significant problem.
Cycling for miles (upon mile) only using one leg was inevitably going to have repercussions. Untangling where MS stopped, and where muscular imbalance started, was impossible (and pointless), but my left foot was continue to curl and cramp – and I was beginning to get worsening tendonitis in my left achilles and knee.
If, as a cyclist, you’re ever wondering whether you can ride without full muscular control of your left foot the answer would seem to be “yes” – but with a ~15% power penalty. (For the record, on my very own “cyclingwithMS” scale, the figure for severe vertigo would seem to be about 90%….)
I carried on riding at the same slow pace – along country lanes, up very gentle hills – not yet able to manage a climb of any gradient.
I carried on taking drugs. My energy levels ebbed and flowed – several times I had to pull them back from those dark caves where tired cyclists go to give up.
By Friday, I felt strength returning and the only thing that was then going to get in my way were worsening pains. I grew concerned about what lasting damage I might be doing to my left leg – such overuse of a confused limb would probably be having all sorts of knock-on issues with tendons, ligaments and bone…. my back was getting achey, and my left knee moved from discomfort to sharp pain. But by then I was starting to believe the balance of power had shifted:
I’d started the week under the thumb of MS; it felt as though I had now prised that thumb away; and, with huge effort, was now reversing those roles.
It was only really then that I realised quite how deep I’d had to dig to get through those last few days – and I felt the welling up of tears as I realised that I had almost broken the back of it.
That night I caught up with an old friend – I wasn’t “quite right”… but an evening of socialising passed with no lying on floors; nor risk of fainting. My blood sugar felt seriously low, but now I thought that was more due to the cycling than the MS. Although I slept in fits and starts, it was invigorating to wake up to sunshine the next morning.
Sunday was the culmination of the week. I’d entered the 200km LVIS’s “Ball Buster” Audax out of Bristol. Last year, I’d had to abandon the same event with worsening issues with my vision. It had been a violently windy day and my focus had been largely on surviving unscathed. This year, the sun was shining and the wind was only a whisper. The cramps in my left side were getting really quite bad – and the associated tendonitis was, at times, like a real bad tooth ache – but (crazily?) I absolutely loved it. Proof were it needed that cyclist truly are bonkers.
By the home straight, my strength had returned and I felt happy. I caught up with loads of cycling friends – and made new ones. The rain that had been forecast did not precipitate.
I rode 250km and could have done more.
A week earlier I had been lying in the foetal position on my kitchen floor – feeling nauseous with vertigo if I even tried to lift my head. 7 days later I had cycled more miles in a single week than ever before.
I hope that all of the above doesn’t take a long-term toll… but, MS, for now, there’s no way you’re taking this round. I hard-earned this week – it’s mine, and feels deservedly so.
I just hope that, in trying to win this battle, I haven’t lost sight of the war.