It confused people – the woman cycling through the forest happily who then has to engage in a rather complex set of manoeuvres to get off her bike, pulls a stick from her bag and limps off. But MS is nothing if not inconsistent and unpredictable.
For a long time after MS really started to affect my walking, I was able to cycle. Foot drop means my left foot drags and my leg is very weak. First a brace, the later carefully selected shoeware and one or two crutches depending on the surface allow me to walk but not easily or comfortably, or even these days safely since trips and falls and ankle sprains are par for the course. The worse and more exhausting the walking became the more I loved the times on the bike. On a moving bike, no-one knows you have MS. My weak leg just needed enough strength to keep my foot from slipping from the pedal and I was off, my strong leg doing all the work. It wasn’t without its dangers; poor balance and slow reactions meant road cycling was off the agenda, and stopping and dismounting became harder and harder, but still I was able to reclaim that non-sense of body that used to be my accompaniment when walking when I was cycling. Moving through space was a combination of upper body movements for direction and lower body movements for power. When walking is difficult the sensation of moving easily and largely unthinkingly through space is like that ice cold beer in Alex in the film of the same name – more welcome than any beer ever was. The benefits of cycling are perfect for MS -the motion of pedalling gives spastic muscles a stretch. Moving means a cooling breeze to help keep temperature down (a real problem for MSers exercising is that symptoms are triggered by heat), and whilst aerobic exercise via walking is impossible as I can’t move fast enough to get heart rate up it is possible with cycling.
Before MS, like most people I was very rarely aware of my body as I moved about. I didn’t need to think to walk. I just did it. But after MS every move is like those early attempts to ride a bike – frustrating and difficult. Ironically because of a sensory problem in part – my ability to sense where my left leg is has been damaged and my balance is affected by that, weakness and vertigo. Normally we are utterly unaware of that ability to sense where our limbs are in space (it’s called proprioception). It’s only when we lose it that we realise we had it (Joni Mitchell was right, we don’t know what we’ve got till its gone). Walking , going up or down stairs, moving around something, none of these are difficult if you can without even knowing it be constantly adjusting the position of feet, making tiny corrections, judging where to move your foot and when, firing muscles at just the right point. But without it, well it all gets very effortful, and scary.
Like a lot of people who acquire disability my feelings of loss and grief are really challenging. When balance issues finally meant that cycling was became too dangerous I felt the loss dreadfully. Having those moments of freedom, of non-sense of body, taken away was painful. As a young woman I had been a really keen cyclist, that I was still able to cycle was a real emotional boost. A stationary cycle in the house felt like such a slap in the ego – a poor substitute for the real thing. I tried to convince myself a tricycle might be ok. But my heart longed for that feeling again. Until recently it seemed a dream, but technology has come to the rescue.
A vertigo training programme on the iPhone has meant that slowly but surely I am getting a bit more stable, the spinning and tipping feelings have become a little less intense. Suddenly the prospect of perhaps one day getting out on my bike again seemed less fantastical. And then I discovered the world of virtual trainers. So this week for the first time I set my beloved Trek up on a trainer, got myself a virtual ride app, and with a bit of faffing around to attach my weak leg with brace on to the pedal so it wouldn’t slip, I was off. On my bike, not some sad pretend bike. It felt so real. I selected an easy ride around part of Australia (!) on the app – the screen displaying video shot by someone actually cycling the ride while the trainer resistance adapted to the details of the route.
And for those minutes once again (some correcting for tipping aside that vertigo still produces – though at least this was not happening while travelling at speed along a road, much less scary!) I felt the beautiful feeling of a non-sense body moving through space. My target of course is to get back out in the real world, but for now this virtual world will do just fine.
If you are interested the set up I am using is:
- Wahoo Kickr Snap trainer which I have found really easy to use. The big plus for me is no need to take the rear wheel off. You just need slip the rear wheel onto the trainer and snap the mount in to place and you are done. It also folds up for storage.
- Wahoo Fitness app on iPhone to control it and save ride details to the Apple Health app so I can monitor training effects
- FulGaz app on iPad for the virtual trainer.