My Frustrations With How Fibromyalgia Has Affected Me

So now I have the disorder with 12 letters. I grimace every time I say it out aloud. Fibromyalgia.

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

I expected to be able to deal with it in the normal, resilient way. Nope, this monster is so irregular you don’t know what will happen next.

Unlike many, I don’t have insomnia, but chronic fatigue and plantar fasciitis were my undoing. Every morning was a nightmare – I could barely put any weight at times on my legs. Combined with the inability to figure if it was menopause and hot flashes, I sweat like a donkey! I don’t even know if a donkey sweats. Big drops of sweat poured down my face when I exerted myself or when I had a shower.

I didn’t believe I had a fatigue problem, and fentanyl worked, albeit I felt like a zombie. When I came off it, I woke up wondering where I was for a year. I slept for long periods – 48 hours – shuffling with my eyes closed to the bathroom. I dropped off to sleep during conversations which shocked and frightened my parents. This happened when I had a system overload.

 

Ironically, two things became sources of amusement: Every shop I walked into always had a handful of tissue for me. The explanation when people asked was “it’s the change” or “it’s the flu in the middle of summer!” The other was the ability to wake up, go to the bathroom and stay asleep on the toilet for up to 15 minutes, only to wake up because your butt was numb and the tissue paper was on the floor because your body went into complete relax mode.

On bad days I walked like a duck. It was heartbreaking and embarrassing. I lost my confidence. Once known for “walking tall” with the perfect stride, fibromyalgia back and hip pain broke me.

The final straw was my nerve pain and back pain. My hands would suddenly go numb and I would drop what I was holding, so I had to look for plastic cups. One day while sweeping my carpet, I couldn’t stand due to pain, and I couldn’t kneel either. I sat on the floor and shuffled on my butt to finish cleaning. I wept and wept deep cries from the soul, wondering who this person was. I finally gave up and got a cleaner.

I’m having a hard time accepting my person, life and dreams could so easily be flushed down the toilet.

Pacing is still a journey for me, but I took a mindfulness class. “Deep breaths, Waírímú,” I speak to myself. “Keep calm.”

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Thinkstock photo via tommaso79.