It’s not something a Red Bull or cup of coffee can fix. Pre-workout only goes so far. No matter what I do, it’s completely exhausting. After doing a load of laundry, I need to sit down and recover. And I mean, sit down for about 20 minutes to regain energy to repeat that process, until my legs give out and I can no longer walk. This happens every day for me. It’s like I’m a character in a video game who needs energy boosts to continue playing, but I can never find the right ones.
Every day, I have to decide how much energy to exert in each activity I do. I work out every day and I constantly am thinking about the amount of energy I give per exercise.
There are two parts to FAtigue, however: physical and mental. While I am fighting to stay awake during the day, there are now about 1,000 questions I have to answer before I set foot out the door instead of worrying about whether I had the right lip gloss and a jacket, as I used to do.
Cane? Walker? Wheelchair? How long will I be out? Is there parking? Where’s the bathroom? Is there disabled parking? How big are the curbs onto the sidewalk? What is the distance from my car to the door? Am I going to have someone there to hold onto? Will it be OK if I hold on all night? Left foot. Right foot. Left foot. Right foot. Don’t fall on your face. Focus on the cane. Fight the fatigue. Will there be alcohol at the event? Bathroom? Do I have to talk to the security guards and tell them about FA first? Should I bring my diagnosis paper? How far is the bathroom? Is it accessible? Will there be long lines? Left foot. Right foot. How many people will get mad when I cut them off because I physically can’t hold it? Left foot. Right foot. How many people will be there? Will I see people I haven’t seen in a while? Bathroom? Do they know I’m sick? How many times will I have to explain FA? How’s my speech tonight? Are there stairs? How many stairs? Left foot. Right foot. Is there an elevator? Where’s the bathroom? How far is the elevator? Will I have enough energy to last? Can I leave when I want to? Or will I have to get up in front of everyone? Where’s the bathroom?
Just going through that portion of the checklist is completely exhausting. Almost as exhausting as going to the restroom so much (breaking the seal has a whole new meaning now). Fatigue and closeness to the bathroom are what encourage me to work from home and be comfortable.
I am completely appreciative of where I am in my progression and I can only imagine the checklist other FA patients encounter every day, but this is me. My list isn’t getting any shorter, only growing, and those energy boosts aren’t getting any easier to find, either.
Note: Friedreich’s Ataxia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.