“Normal Town”

by | Feb 2, 2018 | Current BHC Patient News, ME/CFS, Patient Voice

One morning three years ago, I woke up early determined to do something “that normal, healthy” people do. I donned a t-shirt and sweats, went to the gym, and jogged on the treadmill for 20 minutes. No big deal, right? Think again. The aftermath of my 20 minute stay in “Normal Town” earned me a spot on the ground next to the treadmill, unable to move after such a tremendous exertion, crying in excruciating pain, and spending the rest of the day bedridden.

Having lived with ME/CFS and Fibromyalgia since I was 16 years old, I am accustomed to dealing with debilitating symptoms and limitations. I oscillate between Normal Town and my home life, ME/CFS a constant shadow. Relentless pain. Profound exhaustion. Words and ideas that swim in my head, yet never emit where or when I want them. Everywhere I turn, I am constantly reminded of what I cannot do. This is my normal.

So, why do I have this urge to visit Normal Town- to exceed my limitations, and risk relapse?

I simply want to participate in life, in “normal” everyday activities. To feel I am still alive and part of the human race. You see, in Normal Town, taking a shower, making a meal, dropping my child at school are automatic behaviors. Yet these ordinary acts are not so automatic for those with ME/CFS. Whenever I exert myself, there is a trade-off and my pain will typically skyrocket while my energy plummets. It then becomes a matter of: which activity will I choose, and which ones will I need to forgo?

So, do I attend my daughter’s concert, or tell her why I can’t go? Visit a dear friend, or postpone our meeting? Make dinner, or buy take out?

Amidst my mental battle, I deliberately and defiantly throw caution to the wind and accept the consequences for visiting Normal Town, whatever they might be. I choose to attend my daughter’s concert, sitting in the front row. My daughter spots me and smiles the biggest smile. My husband sits beside me, holding my hand. I feel alive. I feel present. At that moment, I am reminded I am more than my illness. I am more than my pain. I am a woman. I am a wife. I am a mother. This is who I am.

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