Back in 2012, I started to feel a bit off but figured it was because I was entrenched in running our business, Fireside Production – a professional video production company – and being mom to two young girls. Within about six months, I was having trouble climbing stairs and decided to see a doctor.
The diagnosis came quickly: fibromyalgia. The following five years, there were countless specialists and we tried just about every treatment recommended for fibromyalgia – including light exercise routines, medications (Gabapentin, Amitriptyline, Cymbalta, Low-Dose Naltrexone), physical therapy, acupuncture, cupping, hypnotherapy, elimination diets, visualization practices, special herbs, essential oils, testing for conditions like Lyme Disease.
You name it, we tried it. All the while, researching vigilantly (as a former journalist) and telling the doctors that my experiences didn’t match the descriptions of the diagnosis.
I often shake violently when rising from a seated position. What I thought were “tremors” turned out to be horrible muscle spasms. And yes, this video is embarrassing, but I am laying bare my vulnerability because I hope it inspires others to do so as well. Invisible illnesses and hidden disabilities are lonely.
I’m easily startled, which can trigger spasms – and frankly, that’s humiliating. There’s a lack of fluidity in my movements. We know now that’s the rigidity or stiffness in my muscles. The worst part is the pain. The pain is relentless and round-the-clock. It hurts to raise my arms to even shoulder-level. Stairs are increasingly impossible. At night the pain can be so bad, I drench the bed with sweat (I know – hot stuff!). My husband, Tom hears me crying and whimpering in my sleep – and that’s when I am able to sleep. It’s getting worse. Walking short distances takes my breath and body strength away. My quality of life is diminishing and yet, I am still trying to fight.
I continue to work in video production the best that I can. Why? Well, we need our income and health insurance, but there’s also a saying…
Having the privilege to share other people’s stories is my joy… it is my purpose. My family is my purpose, my light and love. I try to stay positive but often, crumble in private.
I hid my condition – a secret battle with my body – for years. I didn’t want people to feel sorry for me. I didn’t have answers for all of the questions that followed when my symptoms became more obvious. I was afraid that – because we become so close with many of our clients at Fireside Production, we would lose work as my physical abilities became more impacted.