The Battle Between Taking Care of Myself and Letting FA Ruin My Life
I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
The most unexpectedly disruptive symptom of my Friedreich’s ataxia (FA) has been fatigue.
When I was diagnosed with FA in 2013, my initial research focused on the big symptoms, such as loss of balance and coordination, heart failure, loss of speech, and severe scoliosis. I read the word “fatigue” over and over, but I didn’t pause to give it much thought. In my mind, how did “being tired” compare to being dependent on a mobility aid?
How naïve of me. I had no idea what true fatigue was. As it turns out, fatigue has become my most life-altering symptom. Fatigue sets the tone for my entire day. Fatigue can exaggerate my other symptoms drastically. And what makes fatigue even more problematic is that it is an invisible symptom.
People can see my balance getting worse and understand my need for a walker. People can read the cardiology reports and see how FA is beginning to affect my heart function. Yet, people can’t see how my fatigue has gotten so extreme that it makes me ache down to the bone and depresses me more than any other symptom. And they can’t understand how a single nap doesn’t allow me to overcome the symptom’s hold on me.
Thanks to fatigue, I am locked in a constant battle between taking care of myself and letting FA ruin my life.
I know that I need to make adjustments for FA symptoms, but I also want to just live my life. I know that I need to give my body the rest it needs, but I also need to exercise so that my muscles can retain strength and keep making connections with my nervous system. I know that most restaurants and friends’ houses can be accessible with help, but is it worth the extra energy I will need to tap into? I know that most days I can muscle through and find joy and purpose in my loved ones, but what toll will days, weeks, and months of pushing the limits take on me?
I am stubborn enough that I don’t want to let FA sideline me and call all the shots in my life, but I have enough self-awareness to realize that sometimes that is exactly what needs to happen.
When my fatigue gets so out of hand that my back aches, I stumble more, I am grumpy and short with my kids, I quit exercising because I can’t muster the energy, I snack on sweets all day desperate for the sugar high to get me through the next hour, and I wake up more tired than I was before I went to bed, I am forced to acknowledge that I can no longer muscle through my fatigue. I have to aid my fatigue, just like I do my mobility.
I have to rearrange my life, even if only for one or two days, to let my fatigue call the shots. I have to prioritize my energy. I sleep for as much of the day as I can, I stretch, and I detox from my sugar overload. I binge-watch a show or movie series and seek counsel from my peers, mentors, and loved ones. I do the work to get into a clear, positive, and determined headspace. In short, I rest, recharge, and reset.
Having FA is a lot of work. Battling fatigue is exhausting and ever-changing. There is no quick fix for this invisible symptom. The successful combination of remedies that get me through one rough fatigue spell will not necessarily work for the next one. But figuring out the way forward is worth it. Fighting the battle against fatigue is worth it. Life, even when complicated by FA, is worth it.
As Albus Dumbledore said, “Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.” Find your light and keep fighting.