The mind is a mysterious place. I felt good. Life was moving along. The new support group for the seizure unit given the green light. Another laser surgery to treat my glaucoma booked, my twice weekly volunteer shifts at the hospital going well, the only box not ticked was my sleep. I’d managed a mere 5 hours a night average over the last weeks. Waking early restless and unable to fall back asleep. I couldn’t even blame it on my four-footed friend wanting his breakfast. Since injuring my leg prior to Christmas, I’d not been getting the exercise I should, sitting on the couch or my chaise watching Shemar Moore flex his adorable muscles on SWAT. Too much stimulus not enough reading, relaxing, stretching. But, hey I felt good. I thought. My mind knew otherwise.
A long overdue visit with my brother and sister-in-law up in Red Deer, a few days of catching up spending time with my nephew and great-nephew, all the usual teasing and laughter I’d missed since before the pandemic. Did it overload my system? Was I stressed about my laser surgery? Was it? Could it be? What hit the switch? Why? Why? Why?
Within the first hour of my volunteer shift that first Monday back home, showing a newbie around the unit., and then…are you kidding me?
Thank God I have an early warning system, regardless of the seizure type. A whooshing sensation, a head rush, overwhelmed me as we chatted with a patient at their bedside. Temporarily stunned, it only took a moment for me to realize I had to leave the room. Excusing myself, I went out to the corridor out of sight. All the grounding exercises in the world couldn’t have stemmed the flow, slow deep breaths, gripping the handrail behind me, made no difference at all. The rising flood swept me up and took me away. Of all the places to have a seizure, Unit 111 was the perfect venue, nurses who knew me, staff trained in reacting to seizures regardless of type, was the best place to be.
Ironically, I awoke in the early hours in the same room where it started. The patient either discharged, transferred out, or moved to another bed.
And so here we go again.
Another three days in hospital, another seizure. PNES? Probably. Are you sure? Likely.100%? The signs lean that way. Yes. No. maybe. So. True or false. Right or wrong. Who the hell knows?
Despite no ambulance ride, no upcoming $385 bill to pay, my bra, shirt, and volunteer vest were still ripped apart, useless and beyond repair. Just another addition to the remnants of clothing to be replaced, a consequence of the situation, EMTs doing their job. At least my warped sense of humour remained intact, with a chuckle, and a sigh, I shook my head and recall thinking, ‘I should have kept track of all the bras, shirts, mittens, destroyed, just to see how much money these seizures had cost me in replacing those basic items of clothing!”
One day shy, I was, of two months seizure free Errgghhhh! But, to paint a silver lining on this constant black cloud that continues to plague me, this past January was the first time since 2019 I hadn’t seized. Progress, right? Possibly the change in antidepressant/anxiety meds may have contributed to it, or my volunteering, the tools added to my toolbox through the teachings gained by UPLIFT, Devon starting his program at SAIT, and, oh so many things. The completion of my memoir, the creation of this blog, and so on.
PNES would be the better choice. It’s treatable, more so than epilepsy. But the stigma it carries, that God awful pseudo term used decades ago, and still uttered periodically by the uninformed, ignorant, professionals who should know better. What the body goes through, how the mind comes to a screeching halt is real. I have no more control over that than stopping the earth from spinning. It’s no fun, it can be painful, the drugs mess up the body, screw up thought processes, hours and days are lost. A PNES seizure is no better than an epileptic one, and not something I’d wish on anyone, let alone pretend to experience.
So. As I’ve done countless times before, I pick myself up, shake out the cobwebs, wash away the dirt, and move on. Up, down, one step, two step, forwards, backwards, side to side. It’s important to keep moving, not to give up. To stand still and sink into the mire isn’t an option. To fall victim to the dark side, to wave that white flag isn’t part of who I am. I’m like that little train chugging up the hill…I think I can…I think I can…I must…I must… I will…I will!
It’s a snowy day here in Calgary, I guess that means March has come in like a lion? Or, maybe more like a snow leopard?
I hope the day is sunny and warm wherever you are.
Take care and stay safe.
Hugs,