adaptive riding – Multiple Sclerosis & Me

I was never a girly girl. I didn’t need 2 hours to get ready for anything – especially when I had the “come to Jesus” moment and realized that hair on my head is overrated and completely unnecessary. I could be ready to do whatever at the drop of a hat. Anytime J told me that he was picking me up at 5 (and I learned that unlike a lot of Trinis, when he said 5, he meant 5), I was ready to jump in the car at 5. I wear makeup but it is not a shitload of gunk on my face and so the time needed to apply it is minimal. I could go on…but you get the gist and long story short, I was never a “high maintenance” person. That is…until now. Steups. I always say that multiple sclerosis has made me so damn high maintenance that it’s downright annoying. Everything has to be “just so” or “just right” for me to indulge/participate etc. I cannot do everything willy-nilly like I used to anymore – I’ve talked about the due diligence steps that I sometimes take before – not getting into that right now but the shit gets tired.

Sunday was the regular monthly bike ride with Catalyst. J and I usually go down together because he rides the same trail that Catalyst uses. It’s always from 10-12, so we get there at 10, he leaves to go do his thing and by 10:30, I’m “gearsed” up, on a bike (read MY bike) and ready to roll with at least one of the Catalyst volunteers. Catalyst has a fleet of adaptive bikes (hand powered, foot powered, upright, recumbent…you name it, they have at least one) and through much trial, error, frustration and a lot of cussing, I finally found the best bike for me – hence the “MY bike” description prior. It’s an upright, foot pedaled, nifty lil thing – it’s too low to the ground for me to get in and out of on my own but everything else is “just right” for me to get a good ride in. Last month, I did 3.5 miles and I was BEAT by the time I got home, but it felt so damn good. Anyhoo, Sunday was a little different because he was going to do a 60mile ride, so I didn’t get there till 11 and so, by the time I got there, MY bike was gone. Here’s where the high maintenance frustrations came in. My bike is compact so when I sit on it and start pedaling, my legs remain bent (even at the greatest angle); they never actually stretch out enough to the point where it’s difficult to bend my left leg (that likes to be stiff and straight out) and bring it back in. The first other bike I tried on Sunday was long and stretched out so you know what happened. I had suspicions, but figured I’d try anyway but after 2 rotations, that left leg straightened up and I had THE MOST DIFFICULT time bending it to bring it back in – I don’t even think I made 1/2 mile. Writing and describing the problems with the second one will take too much time and words but suffice it to say that I rode even less than the first. It was annoying, frustrating, depressing and I always feel bad for the volunteers with me, even though they have always been good sports about everything. I’m not going late ever again. Truth be told, I really want to put a “StaxBike” license plate on it, but I guess that is not acceptable and might be frowned upon 🙂

In other news, I’ve started experiencing a weird pain. and by weird, I mean really weird. I’m not trying to be dramatic here but imagine someone took the divider or compass from your geometry tin and jammed it in your armpit and then dragged it down your arm to your hand. It’s a jolt of pain that starts in my armpit and travels very quickly down my arm. I’ve never experienced anything like this before, in fact never any pain at all. The first time I felt it was April 8th (a Friday) and it happened once a day till the Sunday (odd). Didn’t feel anything again until last week but now, it’s happening multiple times throughout the day and even at night. At this point, it’s more annoying than anything else, course it’s painful too but I think that because it actually only lasts a few seconds at a time, I don’t have enough time to study the pain. I also can’t pin it down to my arm being in a certain position or figure out any kind of explanation at all, so I just have to suck it up and keep it moving – ugh! I actually have a doctor’s appointment later today so I’ll bring it up and see what suggestions he might have. Another MRI might be in order…is it a new lesion? If that’s the case, do I have to live with this? Geez…I’m not really looking forward to what he has to say I don’t think. Anyway, more to come I suppose.

MS sucks!

It’s been a while but I’ve had some long days at work and just haven’t had time to post.

The Catalyst Sports organisation is one of my best finds ever. I’ve talked about Catalyst before – this is the group with which I am able to rock climb. The group affords people with disabilities to enjoy/participate in different sports that we would not be able to under normal circumstances. I started rock climbing in 2018 and we would meet every Wednesday night for indoor climbing and I was even able to participate in one outdoor climb that was an amazing experience…but then, covid came along and everything shut down, including the gym. Rock climbing was out, at least for the hour. Mid 2021, the gym re-opened and eventually Wednesday night rock climbing resumed but at the time, I wasn’t comfortable yet. It was around that time that meh boy J started cycling and I remembered that the Atlanta chapter of Catalyst has a cycling program – I looked into it.

They offered hand pedaled and foot pedaled bikes and I was able to rent one on a monthly basis if I wanted. I thought about it and as much as I wanted to use the foot pedaled, I decided it might be best to go with the hand (a little back story – there was a time when I felt comfortable using a stationary bike in the gym and then I had 2 falls after using it (the last one resulted in a black eye) and that was then end of stationary bike use). Fast forward to 2021 and I decided that I’d rather be safe than sorry so I went with hand pedaled. The issue that I knew I could have is that the bikes are low so getting on and off by myself would be close to impossible BUT maybe I could ask my personal trainer to help me and we could incorporate bike riding into our weekly routine – I had a plan. Well, u know what they say about the best laid plans – sigh, altho I did get a chance to ride in Piedmont Park one Saturday. As it turns out, a few months later, Catalyst started monthly group bike rides and I was able to take advantage of those – for $10, I could rent a bike and ride with a volunteer or 2 on one of the bike trails in the area.

It was while on the last of those rides where I was really struggling with the hand cycle – u see my left arm is spastic too and (especially) when I need/want to use it, it tends to lock up so I don’t have the arm span that I have on the right side. That day I was REALLY struggling and it was getting me upset so I told Brad, the volunteer who was with me to forget it – I had taken soooo long to ride 1/4 mile, and he suggested that I try a foot pedaled bike. I was skeptical because at the end of the day, I would still have to function at home but I figured what the heck; I’ll give it a shot. Well it turned out that it was the best thing; I took 15 minutes to ride the same distance that took 45 on the hand cycle. I was ecstatic – hey, it’s the little things – and I refused to think about what the situation might be at home. When I eventually got there, I took it easy and happy to report, I had no drama; I’ve already signed up for next month’s ride and can’t wait to get back on to see how far I can go. On that same day, I found out that they were getting ready to launch the kayaking program and I can’t wait to try that out even tho I’ll probably have the same arm challenges, but we’ll see.

Anyhoo, I’m in Trinidad as I write and I have Mackeson to drink and good food to eat so I gone so but first…a few pictures.