After receiving my epilepsy diagnosis, I spiralled into a state of shock, disbelief, fear, and , yes, self pity. Emotions I’ve spent decades burying rushed to the surface. Sadness, anger, grief, and even guilt. It’s taken a long winding road full of hills and valleys, moving along narrow rocky paths inches from the edge of a bottomless hole to grudgingly accept my new reality. I didn’t have to like it, let alone love it, but I did have to acknowledge it at least.
And then came the PNES diagnosis. I thought I’d turned a corner moved forward, left the fear of an inadequate system, and feelings of isolation behind a barrier of towering mountains blocking it out of sight.
But life has a way of taunting you, stalking you in a sense, and basically bites you in the ass! All the stuff you once did, the independence you once had and the disease that stole it away.
But. Yes, there’s another but. Always a but. No matter how dark it is, no matter how many gloomy clouds hang overhead, a light does shine in the distance, sometimes hidden from the naked eye. It’s the dawn of change, acceptance, a new reality, a new normal, whatever normal is. For me, the no driving meant more walking, healthier, right? The no working opened up doors to rediscover my love of writing. The poetry I used to do as a teenager. It was therapeutic, the journalling , diary, whatever you want to call it, documented not only my emotions but provided a history of my epilepsy and PNES, tracked the events, the anxiety, depression, the seizures and treatments. It was a record of my journey of the good, the bad, and downright awful.
But. Yes, there it is again. But, what it also gave me, was the gift of progress. Memories fade, especially with epilepsy, medications, and surgeries, and yet, by writing everything down it was like glancing in a rear-view mirror, time travelling with Dr. Who. I could go back and see where my mind was, how I struggled, how the seizures changed over time, the results of each surgery. It validated the challenges I’d faced, and still do to an extent. It showed my growth, how I adjusted , the changes made to reduce the frustrations. It proved I could let go, free myself from always being in control. Of realizing what was important, and what wasn’t, or not so much. I recognized what I could do and what I couldn’t. accepted what I had to let go and what needed tweaking.
I learned how to set limits, to listen to my body and the signals it sent. I eased back on my unrealistic expectations, lowered that bar I’d placed so high I could barely meet it before my diagnosis. I set boundaries for myself and my activities. Restricted outings to every other day or two allowing me to recharge. I stepped back, looked myself in the mirror, really looked, and rejigged my priority list. Where I’d placed myself in the bottom half, or even at the bottom, before, I now put at the top. My mental and physical health was now Numero Uno, my primary focus and nothing would deter me from meeting that goal. Unfortunately, I lost a few relationships with my ‘selfish’ behaviour, leaving me isolated even more than before. And yet, I thrived, I managed, I coped, and was proud of my achievements, something I must continue to remind myself, even today. By setting limits, by creating boundaries, I’ve been able to focus on managing two seizure disorders, my anxiety, depression, and suicidal thoughts. I’m not saying this will do the same for everyone. Our situations, our seizures, our mental well-being are all on different levels and how we deal with them will vary.
What I can say, is limits and boundaries, are lines drawn in the dirt. They’re not written in stone, they can be erased, rewritten, or engraved. They’re your lines, no one else’s and you can do what you wish. Just remember to acknowledge , accept, alter, and keep moving. Eventually you’ll reach that light, that torch on the horizon.
Take care and stay safe,
And as always,
Big hugs,