Jacquie shares her story of being diagnosed with epilepsy and how Epilepsy Scotland’s Check-In Service has helped her.
“We all have some experience of ill health or loss, but there are few illnesses like epilepsy, which are so common yet so misunderstood, even by health care professionals. This is why I want to share my story.
I was an extremely fit, healthy 46-year-old, making plans to return to my chosen career in medicine as my only child started school.
My husband and I had worked hard to realise our dream of a rural lifestyle, surrounded by nature, and were setting down roots for our son.
Then BOOM! One day is all it took to change my small family’s life irrevocably.
Having seizures
I became acutely unwell and spent months in hospital recovering from Encephalitis and a Traumatic Brain Injury, and was then given the devastating diagnosis of generalised tonic-clonic seizures and mild cognitive impairment.
My seizures were poorly controlled despite medication, and coping with this illness left me barely able to care for myself, let alone anyone else.
My driving licence, proudly strived for at age 17 was revoked. Work was no longer an option. The education I had received and my qualifications, so paramount to my sense of identity, no longer useful.
Our rural retreat, once so cherished, became a huge barrier as it heightened my isolation. Rather than care for my son and I, my husband was left with little option but to work longer hours to support us, leaving us incredibly vulnerable.
Every aspect of life was changed, and a burgeoning NHS left us poorly supported and ill-equipped to adapt.
Years of injuries, hospitalisations, and little to no help of any kind, straight into a global pandemic, left me traumatised, unmoored, and questioning the point of my existence. On retrospect; I was in crisis.
Epilepsy Scotland Check-In Service
My overworked but incredibly dedicated Epilepsy Specialist Nurse recognised this but had very little resources within his remit.
However, he still had one ace up his sleeve – a referral to Epilepsy Scotlands Check-In Service.
To the untrained eye, this may not seem like the answer to such complex issues, but believe me, this seemingly minor intervention CAN, over time, become a lifeline. It became mine.
Until that first call, yes, I was skeptical. However, I soon learned due to the experience, compassion, understanding and patience of “my Uschi” as she is known to us Kiltie’s, I was able to be open and vulnerable.
Through Uschi’s wisdom and investment of all of the staff of Epilepsy Scotland, I was helped into a place where I am no longer in “crisis mode” and feel better equipped to deal with the challenges posed by my illness.
That first call was two years ago, and this organisation, who help so many, have never failed to support me.
They remain firmly by my side. To celebrate my triumphs, enjoy my news and are a constant source of strength to me.
So, when my family were asked to be involved with a fundraiser within our community, there was no debate as to which charity would benefit from our efforts.
I feel so privileged to be able to give back to an organisation that not only helps people LIVE with epilepsy, but in my case helped to save a life.”
If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at dcoates@epilepsyscotland.org.uk or call 0141 427 4911.