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My life with FSHD

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Tali

My life with FSHD

I am Tali (@rollwithasmileblog), and I have FSHD (Facioscapulohumeral Muscular Dystrophy). The first symptoms appeared about 15 years ago, at 25, and I was officially diagnosed in 2009. FSHD is a muscle wasting disease that affects people of all ages and genders. Most commonly affected are facial, shoulder and upper arm muscles, but other skeletal muscles also gradually weaken and in 20% of cases, people require a wheelchair.

Currently, there is no cure or treatment available. The tricky thing with this disease is that it operates in bursts of deterioration, followed by periods of no change. With every burst, you become weaker, you lose another physical ability, another part of independence. With every burst, you need to reassess your life, make adjustments, learn to accept and love your new self. With every burst, you can’t escape the dark thoughts about the future; what kind of life quality will you have or how it will affect your loved ones. Every time the disease pauses, you become hopeful that that’s it, it will not get worse but there is always the fear that it will.  Over the last 15 years, my life has totally changed. From being an independent, career-oriented woman with a full social calendar, I am fully dependent on caregivers and mobility aids, unable to work or maintain an active lifestyle anymore. It has been an endless cycle of shock-mourning-adjustments-acceptance but every time I came out a little bit stronger, more humble and more accepting of me. The biggest realization for me on this journey is that everything is a choice. Not an easy one sometimes, but a choice. Every day I choose to look at the positive, to enjoy life and my loved ones while I can, to love myself and take care of my body even if it has failed me, to learn from the hardships and better myself. I choose to be HAPPY!

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