To be honest, I struggled with writing this post, and I’m sure it’s because I was afraid people would feel bad for me (please don’t) or I was afraid people would think I’m exaggerating (I’m not). I even feared that people would think I’m lazy which is the furthest thing from the truth (goodness, when did I start caring what other people think of me!?). As a woman with whatever unicorn muscular dystrophy I have, I’m constantly tired, eating can take a tremendous amount of effort, walking certainly is exhausting, really almost any daily task can be exhausting. But I don’t let this stop me.
Fatigue management is something I’m slowly learning and working through. I love to be on the go, and doing as much as I can during the day, but I’ve realized that as I get older I have to better plan out my days, so I’m not in a constant state of physical exhaustion or pain.
When I’m thinking about my week, I think about what will require the majority of my energy, work and spending time with loved ones. Before I made the choice to bring my wheelchair to work, I would come home beyond physically exhausted; I could not do anything for the rest of the day. So the first thing I do to conserve energy is use my wheelchair; walking can be a literal marathon workout, like damn only if it was because I’d be in tip-top shape!
At work I use my wheelchair to save my energy for the important stuff like teaching or facilitating a meeting; I’m not going to spend my energy walking to different areas of my building when the main objective isn’t walking. Using my chair has allowed me to have a better life outside of work and have more energy for my job.
Deciding to use my wheelchair in other situations hasn’t been easy. When I am out at a bar or concert, people often assume that my friends I’m with are my caregivers. Or others feel inclined to tell me how great it is that I’m out and about; like yea I’m going to turn into a pumpkin before midnight though, so stop wasting my time. But in all seriousness, using my wheelchair in all aspects of my life has been a serious way to manage my fatigue. When I’m out I don’t have to worry about loosing my balance or tripping because worrying about that also takes a lot of energy, energy that I don’t have.
I go bike riding because it’s something I enjoy, but it’s also exhausting (as it would be for anyone). When I know I’m going bike riding, I don’t plan anything for the rest of the day; I have to build up my energy again.
So my point in writing this is to hopefully reach someone who needs to hear what fatigue management is or that it’s ok to use your mobility aids; it’s self care.