Sudden Epilepsy Diagnosis: A Learning Curve
Jacynda-Leigh Greenwood, Clinical Training Centre Co-ordinator at Health New Zealand | Te Whatu Ora Te Tai Tokerau, hopes to share her personal story so others with epilepsy do not feel alone.
Recently diagnosed in January this year, Jacynda-Leigh does not recall any of her seizures due to them happening during her sleep. Her partner shared with her what happened.
“The first seizure I had was back in November last year, which occurred in the early hours of the morning. He woke up because he knew something wasn’t right, and sure enough, when he looked over at me, I was stiff, shaking and turning blue. He completely froze and didn’t know what to do. Luckily, my mum had been visiting at that time, and he managed to get her, although he could barely speak. She rushed in and told him to place me on my side and call the ambulance,” Jacynda-Leigh shares.
The seizure was about a minute long, then she fell straight into a deep sleep for roughly twenty minutes.
“I then opened my eyes, but I was not with it until a further forty minutes later. The first thing I remember is waking up in the ambulance and wondering what we were doing and why we were there, I just kept laughing. My partner was beside himself from what he just experienced. It still took quite some time for me to fully realise what was happening as I had no recollection. I then had two more seizures in January, with a day in between them both.
This sudden diagnosis has affected not only Jacynda-Leigh’s life but her partner’s and kids’ lives too.
Jacynda-Leigh is not allowed to drive, so she can’t just get in the car and take her kids to the park, pools, shopping, fishing, or any of the fun activities that the family used to enjoy.
“I can’t jump in the car and drive down to the shop for milk or bread. I can’t be left at home with just me and my kids without being worried about, or constantly asked if I’m alright. This has been a huge hit mentally and really does take a toll on the mind, body and soul. By the afternoons, I am majorly tired and exhausted.”
Jacynda-Leigh is currently raising a baby and a toddler, therefore they miss out on her full energy and so does her partner.
In saying this, she adds that she wouldn’t have asked for a better partner and loving kids to go through this with her, as they have been nothing but a blessing.
“My partner is doing an amazing job with getting us to wherever we need to go when driving is required outside his work hours. He has been amazing with asking me how I am managing it all, mentally and allowing a safe space for me to vent, unwind and talk about how I am feeling each and every day.
“They are patient, understanding, and kind, loving me just the same as before, if not more. We have all learnt a lot with this diagnosis and are still learning more each and every day. It’s a bit of a journey.”
The Clinical Training Centre Co-ordinator mentions that her workmates have been amazing supporters. Her team celebrated Epilepsy Awareness Day in March, and everyone joined in wearing purple, sharing morning tea, setting up decorations, and offering a donation.
“Since I found the courage to share with all my teammates, they have been nothing but supportive. They all have had little tips they’ve shared with me or simply been an ear for me to share my experience with. They have all reassured me that this is ok, and they are here for me in any way that I may need. I am blessed to have such a great team to work with,” she says.
Other support networks include her mum who helps while her partner is at work. NorthAble has also done an amazing job with getting her a card that allows a discount on any driving service she may require.
She has been on medication since early January which has helped a lot.
“Fingers crossed for no more. I am doing my best at making a few lifestyle changes to help improve sleeping, eating and drinking. In return, I have felt this has made an impact on managing my epilepsy.”
As tough as it has been with recently being diagnosed, there have been many learning curves and self-growth she says.
“This diagnosis has shown me who is truly there for me and loves me regardless and also who is not. It’s allowed space for myself and those close to me to open up to a new way of navigating life. I am stronger, wiser, and braver than ever before. I am proud to show who I am and to not let something like epilepsy stop me from achieving anything that I want to achieve in life,” smiles Jacynda-Leigh.
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