For the past month or so, I’ve been considering using some sort of mobility aid to help me be able to do more and last week, we found a good deal on a used scooter called a Travel Scoot.
The reason why this is so useful is that my illness makes it so my body doesn’t produce energy properly. Let’s pretend that each day you have a certain number of energy points that you can “spend” on whatever you want. You may have say 5000 energy points, but I may only have 800. Taking a shower might use 100 points, walking 2 blocks might use of 500 points, and something like cooking scrambled eggs may use of 100 points.** If I use up all my energy points, not only am I exhausted, but I get other weird symptoms like tachycardia, dizziness, brain fog, headaches, trouble remembering things, muscle aches, and a sore throat. I’m constantly trying to go about my life and do things I enjoy while exerting as little energy as possible so that I don’t feel worse and end up in an energy deficit. To give you an idea of what this looks like for me, here are some things that many people don’t need to do, but that I do to save energy: ordering groceries online, sitting down while doing my makeup, cooking while sitting on a stool, sitting while taking a shower, lying in my bed while I study, etc.
Yesterday, I used my scooter for the first time and it was so liberating.
There’s a little town near my house that we used to walk around and explore all the time, but since I got sick about a year ago, I haven’t been able to walk around it freely. Yesterday, I scooted around town for about an hour and a half and looked in shops and enjoyed the fresh air. I was able to go everywhere I wanted to go without feeling horrible or having to set aside days afterward to rest and recover. Just breathing the fresh air felt so good and being out in the sunshine without feeling faint or having my legs feel shaking was so wonderful. I felt so free and I couldn’t stop smiling as I scooted across the sidewalk.
I was really afraid that people would stare at me and make rude comments since I don’t have anything visibly wrong with me, but it was quite the opposite. I had 3 elderly people tell me things along the lines of “ that’s so cool” “ I wish I had one of those” “wow that’s great,” which was really encouraging. There was a bookstore with about 3 stairs leading up to it, so my grandma and I lifted my scooter up the few stairs. When we got into the store, the lady working there really kindly told us that there was a ramp at the back of the store and that whenever we wanted to leave, we should let her know, and she would show us where it is. I feel really grateful that my first experience went well because it gives me the confidence to use my scooter again in the future. While I’m still nervous to use it, especially at college (!!), any amount of self-consciousness was made up for by the fact that I just did something I haven’t been able to do in over a year.
Although it was hard to make this decision, I’m so happy I did. It’s a step to being more present in the world and getting more out of life, despite my body still not working the way it should. I got tired of waiting until I got better to go out and do things and with this new tool, I’m looking forward to being able to do things like going for a “walk” ( albeit a scoot!) or going to the mall, or just walking to the bus stop without pushing too much.