5,000 km = 3,108 miles (05.08.2018)
Today’s a milestone day for me, as a rare disease patient. You’ve probably noticed, if you follow this blog, that I love cycling. I love being out on my bike so much, in fact, that I’m willing to ride one-handed because of CRPS – instead of giving up my rides altogether.
Before I broke my arm, which is what triggered the nasty neuro-inflamatory disease named Complex Regional Pain Syndrome (CRPS), I even had 3 bikes! For longer rides, I’d use my road bike; a women’s racing-style bike that I’d bought on sale in 2003. That bike had replaced an old – and very heavy – Raleigh Record I’d had since I was a kid.
My dad had taken me to choose that Raleigh, and he spent a lot of time making sure that the fit was right for me. Then he and I used to ride together often, even all through my teens. I’d taken very good care of that bike over the years, because it’d been a gift from my dad.
When I was young, my dad was doing a lot of long-distance cycling. He’d ride 800 km (500 mile) return rides, bicycle-camping to join my mom, my sister & me at our grandparents’ place (and then biking back to our home). This was back in the 1970s, when no one we knew was riding long distances; or had ever heard of bike-camping or bike-packing!
So I guess I can say that a passion for cycling’s in my blood ,-)
After almost 30 years, one of the front forks on my old Raleigh cracked and couldn’t be repaired. So when I needed a new bike in 2003, I bought a road bike. Soon after that, I started bike-commuting to work & running errands by bike. My new road bike – with its narrow tires and no room for a bike-pack – wasn’t very practical for either of those types of rides.
So I bought a second bike; a ‘commuter bike’ with wider tires that made it more stable when I was carrying a heavy load. And I had a pack-rack installed on my commuter bike, with an expandable bike-pack that I could cram full of groceries; or the clothes, shoes, and toiletries that I needed to bike-commute to work.
The road bike was for long rides, mainly on weekends and sometimes before or after work. And the commuter bike was for riding to & from my office, and for errands. By then I was riding to work a few times each week during our cycling season (not in the rain or snow, though!) – about 20 km (12½ miles) each way, so 40 km (25 miles) return.
But that all changed on March 6, 2016, when I broke my arm just before the start of cycling season here in Montréal; our cycling season begins when the snow & ice melt off the roads in the spring. Everything changed, because that broken arm was the start of CRPS in my right hand & arm. Some of my doctors told me I’d probably never bike again – but they didn’t know yet just how stubborn I can be!
My first ride, after being struck with this disease, wasn’t until more than 3 months later; on June 16, 2016. It was a very short ride, but was really important to me. It felt like getting part of my life back. I wrote about that in my post From patient to person.
At first I could only bike for a few minutes, all out of balance because I was riding with my right arm across my chest; with my right hand on my left shoulder.
I found a more comfortable one-handed position on my bike after a few weeks, and still ride that way; holding my right arm in front of my waist, so my right hand hovers just above my left hip. I keep my shoulders even, but bend my right elbow and keep that arm slack.
It took a very long time, but now I can sometimes do a 50 km (31 mile) ride – if I stop often to rest my right arm & hand, so I don’t get so many neuropathic pain flares from the vibration of my tires on the road. And from riding over cracks, and potholes – our roads are just terrible here in Montréal!
Last year I started cycling before work, once or twice a week. I was being super-careful not to trigger any neuropathic pain flares; treating my CRPS-affected hand and arm like glass while I was riding. And I’d only ride 20 km (13 miles), because I didn’t want to take a chance that my hand would really hurt all day at work.
This summer I started riding more often before work, trying to ride 3 or 4 times a week. My early-morning rides got longer as well, usually 25 km (15 miles). I’m doing more of the longer rides on weekends, too; sometimes 50 km (31 miles) on both Saturday & Sunday.
I have to wear a huge Arctic mitten on my right hand & wrist, even when it’s 45°C (113 F) outside, though! That’s because wind – or a breeze – passing over my skin can trigger horrible pain in my arm and hand; that’s called allodynia. And I still ride as though my right hand & arm are as fragile as glass; in a way I suppose they are.
But I’ve been very proud of myself, for sticking with something that I love so much – despite the pain and fear that comes with every ride. Fear of falling (onto that hand), or fainting or throwing up from the pain – while I’m on my bike, of making the pain worse; so many things to worry about…
I mentioned earlier that today marks a milestone for me. When I broke my arm, the odometer on my still-new commuter bike was at 1,127 km (700 miles). After my ride this morning, the odometer read 6,162 km (3,829 miles). That means I’ve now ridden 5,035 km (3,129 miles) since I broke my arm, since I was struck with this horrid neuro-inflammatory disease.
That milestone is 5,000 kilometres of cycling with CRPS. 3,108 miles. After some of my doctors had told me that I’d probably never be able to ride a bike again. So I’m feeling really proud of myself today. I’ve already done something that many of my doctors thought would be impossible!!
Photo: Sandra Woods