In 2013 I was diagnosed with epilepsy. During 2016, after various hospital stays in Glasgow, with video EEG analysis, another diagnosis Functional Neurological Disorder seizures (FND) was added to the list.
What happens to your body with FND?
A myriad of confusion, frustration, negative & guilty emotions hit me:- was I suffering from a psychological illness, another neurological illness, was there a mis-diagnosis, was it connected to epilepsy or something more serious? There was relief on one hand that this additional seizure disorder wasn’t causing anymore brain damage but what was happening to my body to cause all these continuous debilitating impairments and daily symptoms?
No single cause but my epilepsy, my sleep apnoea and anxiety combined were abnormally effecting my brain signals being sent along the central nervous system to the body at the correct time. Thus symptoms of chronic fatigue, inability to speak, brain fog, non epileptic seizures, headaches and altered awareness are the norm when I try to wake up most mornings.
Does anyone else have a foot in all these camps….epilepsy, sleep apnoea, anxiety and FND???
Sadly like many of the epilepsy patients and FND sufferers in Northern Ireland today help is needed more than ever. There is only 1 full time Neuropyschologist in Belfast treating FND.
Not enough health staff who fully know FND, lack of access make it vital awareness is raised. And that doesn’t even mention the stigma within the medical profession and among the public.
Now I’m trying my hardest to pace myself through each day but feel after 8 years I’ve lost control of life and my future.
Each of my health conditions became a new beginning, so too I have lots of new things to learn humbly as a Christian, God always rejoices over me, hears my cries, begins and brings to an end. I need to embrace life, acknowledge how hard each day is and not let my disability define me fully.
It’s taking me 8 years to share my story outside of family and friends.
Please please, take your time and begin to share your story, encourage yourself.
By Billy, Belfast