When Real Life Collides With My Virtual Friedreich’s Ataxia Updates

Since my Friedreich’s ataxia (FA) diagnosis in 2013, I have chosen to openly share my journey with this progressive, degenerative disease. I share updates about both the physical and emotional changes in my daily life as dictated by FA, on social media, in columns, in text threads, and in conversations.

Sometimes I share the information because I believe that people genuinely want to know what is going on with my health. Other times I share because I am seeking encouragement, prayer, advice, compassion, or an opportunity to educate.

I usually choose to share my updates in real time. I write about my symptoms, what my doctors said and suggested, any action items I need to implement, and how the event makes me feel. Writing about my feelings is therapeutic. Putting the facts and my feelings out there for the world makes them real, which helps me move to acceptance.

After I make the necessary physical adjustments and adaptations required of me by my disease, my feelings about those changes follow suit, and I keep moving forward. I sometimes share an update, or just continue living my life.

When I am caught up in my daily life and someone asks for an update about something I shared, it is momentarily disarming. I have usually gotten used to the “new normal,” and those adjustments have fallen by the wayside in my mind as I prioritize life with my family.

For example, my latest new symptom is painful peripheral neuropathy. My update essentially communicated that over the winter, I unknowingly neglected to take care of numb toes, and therefore damaged them pretty severely.

I posted on my social media accounts about my appointment with the podiatrist and the follow-up care protocol that I would have to adjust to. I now have to wear diabetic socks 24/7 and acquire a new army of recommended shoes that will allow my toes to heal, and then hopefully prevent an acceleration of my neuropathy.

Although new socks and shoes seem rather minor compared to all of the medical adjustments I’ve had to deal with thus far, it felt huge to me at the time. And my social media post reflected that. What people often don’t see is what comes after my updates.

As usual, I was forced to go through the stages of acceptance pretty quickly. When FA symptoms disrupt my life, I quickly follow the doctors’ orders so that I can shift my focus back to my precious family rather than my disease. I find a way to make my disease fit into my lifestyle rather than adjusting my lifestyle to fit my disease. This mindset usually makes the seemingly big and catastrophic adaptations demanded of me seem more manageable and less scary.

So, I ordered dozens of different brands of diabetic socks and several different shoes to try, and I found the combinations that work for me. My painful damage is on the path to repair. My toes are back to just being numb and discolored rather than painful and covered in blisters. I am used to wearing socks 24/7, and the new shoes aren’t as hideous and obnoxious as I anticipated.

Over the past few weeks, I have seen many people for the first time since my peripheral neuropathy update. They ask about my toes or comment on my “cute new shoes,” and I have to switch back to my FA state of mind to give a proper update.

I am honored that people care enough to ask. I am proud when they say kind things, such as, “You look great,” “You seem to have taken this in stride,” or, “Good job.” I am humbled when they tell me that I inspire them by simply continuing forward with as much joy and gumption as I can muster. That is why my motto is “Grit & Grace.” I do what I can to grit my way through my problems, and then I rely on the grace of God to keep going, despite my disability.

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Friedreich’s Ataxia News 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 another 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 or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.