“Freedom is the oxygen of the soul.” Moshe Dayan
Well, once again I have stepped away from this space for a bit. Recently, I have started to breathe a bit better. Things seemed to have eased a bit in the world and hopefully for many of you who live with chronic illness. I’m sure many of you, like myself, have felt like we have been stowed away for the last 15 months during the Covid pandemic. As the sun starts to shine a bit more with summer coming in the Northern hemisphere, things are starting to feel a little lighter so I thought I would provide you with a bit of an update on my life and I am optimistic that I will have much more to say moving forward.
Where I live in Alberta Canada, the Covid situation is getting much better. We went through a daunting third wave, and are now coming out of it. We have almost 70% of our population with first doses of vaccines and 10% with second doses. I am one of the lucky ones who have recieved two doses of Moderna. Because I am on a monoclonal medication that targets my B cells, I was able to get my second dose 3 weeks after my first, unlike most of the population who have to wait 16 weeks between doses. The first dose was super simple with no side effects. The second was a different story. I almost called an ambulance the first night. I had intense side effects for a couple of days. I lost my vision and couldn’t move my leg at all. On the third day, things started to ease up. I talked to my neurologist who said it was likely because I had a sustained high fever for a few days. This caused my MS to kick into high gear and lots of my symptoms to rear their ugly head. Now, I have no residual side effects and am so happy to have as much protection as I can get now from a vaccine. I would strongly recommend keeping an eye out for fever and doing a better job at keeping it in check than I did. I also booked my next Ocrevus infusion for the end of this month with out delay which will fix me up even more.
That is the medical stuff updated. Why I am so excited about having received my vaccines, is that I can now get back to living my life that I have felt has been on hold for awhile. I started going back to acupuncture which is making me much more comfortable. Because I am more comfortable when moving around now, I went ahead and took the leap to spend the money on buying an ALinker which I talked about ages ago in a post from July 2019 https://anundefinedlife.com/2019/07/12/alinker-walking-bike/.
It took me awhile to follow through. When it first arrived, my husband put it together and I started using it on the sidewalks around our house. I was instantly frustrated at how intensely hard it was for me to use. Partially because I have not been walking much at all during the last year and a half. Because I am so immune-compromised, my husband had been doing all the groceries and going out in the real world. My muscles had atrophied so much that they were so weak. Also, because it took a bit to get the settings right for me with the seat positioning. Finally, our road is sloped upwards. I had to go only one way so that I was doing the “climbing” on the way out or I was too tired to climb on the way home and my husband had to push me part of the way. After a week or so, I started to think about taking it out more in my real life. That would be the real test to see if it was worth all the money that it cost.
My first expedition was to my favorite farmer’s market. I brought my walker in case they wouldn’t let me bring it in. The man at the door didn’t even blink an eye. That is why I love markets. No judgements from my kindred folks. It is a really big market and has concrete floors which normally kill my back and legs. I normally have to sit down many times to do the whole thing. This time was different. We walked the whole market, some parts twice. It was so easy to maneuver on. I could get right out up to booths. I know many of the vendors who asked so many questions about the walking bike. Even bigger than that, was that no one was talking down to me because I was the same height as everyone else. It was such a boost to my self-esteem to be at the same eye level as everyone else. Two new friends that we have met through our dog park, where we bring our new puppy Dax, joined us at the market. To be able to walk and talk with them, even with masks, was so fantastic. I normally have to worry so much at looking at the ground ahead of me with my walker so that I don’t trip, it is hard to be really involved in conversations. While I was walking, the woman I was chatting with accidentally kicked my back wheel. She said sorry and that she had forgot I was even on the bike. She had no idea how much that meant to me. I felt like an able-bodied person who was just walking beside her. I am not embarrassed of being disabled, but it was really nice to be able to forget about it for a bit. When we first met the other couple at the market, they said they thought that I would be tall. I thought about that and thought “Oh yeah. They had only ever seen me at the dog park where I am always on my scooter.” Those little things meant so much to me. So many people came up and asked me about it and were so interested and said they knew someone that this would change their life for. When we left the market and went to get into the car, I almost started to cry. I cannot remember the last time I have walked that far and not been so fatigued and sore. I usually can barely get into the car and would have to go home to rest and the rest of the day would be a write off. That day was different. I was not tired at all and not even slightly sore. I went home and still was able to do some gardening and made dinner. I feel this new device will change my life. Way more my everyday life that just using it for exercise.
A few days later, I took it to Costco and walked to entire store with it which I could never have done with my walker. It took a lot longer because so many people stopped us to ask questions about my bright yellow bike. I don’t mind because May was MS Awareness month and my banana bike was all the advertising I needed to talk about MS awareness. The only downside that ever came was when people asked about the price of the bike. They are $2600 Canadian. It is so worth it to me, but it is quite inaccessible for a lot of people on limited incomes and it is not considered a medical device which infuriates me. That is my next area to focus on so that many more people can access this device. The company has three ways to purchase it. You can buy it outright. They also have a rent-to-own program where you pay $1000 to rent for 4 months and then $200 a month for the next 8 months if you want to keep it. They also have a Crowd fund program that you can apply for which makes it a bit more accessible.
My right leg did start to get tired by the end. The good thing with the ALinker is that I could rest my right foot on a post on the bike and keep walking with my left leg which is much stronger. As we were cashing out, I heard someone yell “Hey! Want to race?” I knew right away who it was. A great friend, Tahir and his daughter Hanna. We had travelled to Mardi Gras with Tahir and his wife Shadya 6 years ago. Tahir and I had raced on my scooter at which time I flipped my scooter. We had a great chat. Again, being able to chat at eye-level. That is who we are with in the picture that started this post.
I had originally wanted to update you on my life, but the ALinker has taken over my post. I am so excited about it and how much freedom this simple device is going to provide me. I can focus on doing things rather then just focusing on walking. An added bonus to my bike is that the other day, my dog tripped me in the back yard. I went down pretty hard. I was worried because my husband wasn’t home and I have not been able to get up often on my own lately. I gave it a try and got up without any issue. The walking is obviously strengthening my legs more than I realized. Such a bonus which also means I might be able to try going back to yoga and being able to get on and off the floor again. I’m going to add a section called “Where is the ALinker Now.” I want to come up with a name for it. If you have any ideas, send them my way.
There are so many other areas of my life that are opening back up that I am so excited about and will update you more frequently now that I have something to say other than “I have been home doing nothing.”
Glad to be back home in An Undefined Life with all of you. Let me know ways that your life is beginning to open back up.
Hope you are all finding things to look forward to.