My Pipe Dream Life

The unmistakable sense of deja vu comes over me as for the third time in six months I find myself online booking accommodation for a foreign adventure. After being bitten by the travel bug on a gap year from college new runaways are a staple of my yearly calendar. Along with study, travel has shaped who I have become today. Besotted with the almost too perfect views of Lake Bled I finalise bookings for my 25th country while finishing breakfast. Its scenery will make it a far cry from my last unforgettable trip to Chernobyl! Taking my morning medication I pull myself away from the laptop, grab my bag and keys and head out the door of my city centre apartment to work. My walk takes me through the heart of Dublin to the offices of one of Ireland’s biggest architecture firms where I work as a project architect. The latest construction boom is evident as the office hums with activity. Gathering up our drawing pack I head to a design team meeting with my colleagues for our project in the Docklands. To be part of projects that are influencing the city we live in is an incredible thing. To see a project i have worked on take shape before me is the greatest reward of my career. My work-day is broken by a weekly muay thai class with my friends which serves as both stress relief as well as exercise! After work I run for the bus to take me to my weekly driving lesson. On the bus out I check my calendar for the coming week while taking my evening medication. The following evening I have a concert with my friend, Wednesday I have kept free, Thursday I have a photography workshop and Friday I have kept free. Balance has become the core to my routine. In my twenties driving was one goal I had accepted I would never achieve and now I am ending a day’s work with drives around Dublin.

Diagnosed at 19 the life I am currently living was a pipe dream. “You will never be able for it” was almost a mantra. While I always had my family around me who stood by my stubborn decisions, the support structure desperately needed for further research, mental and emotional support and understanding was not there yet and still has a way to go in Ireland. I learned by doing, by pushing my boundaries too far, having seizures and starting again. The important points to note are I was never starting from scratch as I had always learned something and I was doing what I loved.

In 2013 under the expert care of my neurologist, I spent 6 days in Beaumont Hospital’s Epilepsy Monitoring Unit. What we learned during my time here has taken me from strength to strength – from guaranteed seizures every three weeks to now dormant epilepsy. The right combination of medication along with a balanced lifestyle means I now use my epilepsy to live a rewarding life rather than have epilepsy dictate it.

I will always remember words of a family doctor when he said “The brain is the most complex organ in our bodies, it can make you or it can break you”. Without the treatment I did receive I could easily be leading the first life I described, not a day goes by that I do not realise how lucky I am. Epilepsy is an almost incomprehensibly complex neurological condition – one that affects its patients physically, emotionally and psychologically. With 40,000 people in Ireland suffering from it we do not have adequate facilities in place to both treat and research this condition to a high enough standard. Anyone can develop epilepsy at any stage in their lives. The reality and complexity of this needs to be addressed and an Epilepsy Centre provided to ensure we can treat Irish citizens and help make and re-make their lives, as too many currently feel broken.

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Gina’s Story

Me, Myself and Epilepsy

My name is Gina and I’m an epileptic.

I was a 19 year old college student enjoying a house party when I had my first known seizure. While I was sleeping I had a grand mal seizure. The seizure caused me to bite my tongue, gums and to vomit. An ambulance was called and alcohol was blamed. My second seizure arrived later that day while resting. This time I was taken to the hospital and the usual tests were run but nothing was found. I was in so much pain after the seizures. My muscles hurt, I could hardly walk and I had badly bitten my tongue and gums. I can barely remember anything it was all a blur to me.
After this I gave up alcohol for a year and was an outpatient in the Our Lady of Lourdes Hospital. The seizures continued but were few and far between. Despite this the hospital told me I didn’t have epilepsy and I was checked out. It didn’t make medical sense as to why I was suddenly having seizures and this scared me. After experiencing another bad seizure while in college I was taken to Blanchardstown Hospital where I was told I did have epilepsy but to be properly diagnosed I had to see a specialist in Beaumont hospital. The waiting list was ridiculously long but thankfully I got an appointment in St James Hospital. I was so nervous about the appointment and even though I knew I would be diagnosed I was still devastated when I was. I felt confused, embarrassed and ashamed. I knew very little about epilepsy and I couldn’t understand how I could be epileptic. There was no family history and no explanation to why I was having seizures. The seizures followed no pattern and there seemed to be no rhyme or reason. The uncertainty left me feeling alone and afraid. People reacted differently when I told them and that made me want to hide and to ignore my epilepsy. I tried to forget about it and just get on with my life but ignoring it made me feel ten times worse.

My seizures had started off as irregular grand mal seizures that occurred in my sleep but got progressively worse. I had different types and they became more frequent as I got older. I had grand mal, partial, complex partial and everything in between. Had seizures both in my sleep and when I was awake. I could sense I was going to have a seizure when I was awake. I would have a strange feeling in the pit of my stomach that would take over my whole body and left me feeling like I was losing control over my mind. I would freeze up, look disorientated and smack my lips together. After a seizure I would struggle to go back to “normal”. I had little or no short term memory and it could take anywhere between 15 minutes to an hour for my memory and speech to improve. I would be out for the count for the rest of the day; slow, in pain and upset. I’ve been told by the people who took care of me that straight after a seizure I was pretty funny; acting like a drunk with no clue what was going on, barely able to walk and I went from giddy to cranky at the drop of a hat. Thankfully I have very little memory of this. Over the last few years I have tried different medicines and different dosages but the medicine wasn’t working. It got to the stage where I was tried, stiff and often sore every morning. My energy and concentration levels were dropping, I was moody, angry and depressed. I let the seizure’s take over and I was lost in my own mind. This was a difficult time for my family and friends. They all wanted to help but couldn’t. I often forget that the people who surround me are also affected by my epilepsy and have also gone through anguish and worry. They may not know how I feel but I don’t know how they feel.

After years of trying medicines I went to the epilepsy ward in Beaumont to fully understand my seizures. Despite the cabin fever and the discomfort of having camera’s watching over everyone, it was a good experience as I got to meet people who were going through similar situations. Talking about my epilepsy to other patients gave me a sense of relief and I didn’t feel so alone anymore. I made the mistake of hiding from my epilepsy for years when I should have reached out. I recommend anyone going through similar situations to reach out to Epilepsy Ireland and talk to people who will understand.

After finally learning exactly where my seizures were happening and how to deal with them I made the decision to have surgery. Medicine was not working for me so surgery was the best option.
A year on and I’m seizure free and happier than I’ve been in years. Now I will go and learn how to drive and finally be myself again.

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Darren’s Story

Darren* is 36 years old. Born with an intellectual disability, he has been lovingly raised by his parents, and subsequently by his sister and her family. He enjoys word searches, and roast beef dinners. He has also battled epilepsy most of his life, with regular disabling tonic-clonic convulsive seizures, despite multiple medications. He developed psychosis and violent behaviour three years ago, prompting psychiatric admission and medication. He started attending Beaumont Hospital in 2017, where he first attended the Accident and Emergency Department eight times there, and he has had five admissions to an acute neurology bed. He has had five neurology clinic visits and eight telephone encounters with the nurse-led telephone advice line. He has developed osteopenia (thinning of the bones), kidney stones, and falls, as a result of medication.

During one of these admissions, his sister was unable to take him back – dedicated and caring, an unsung hero of our healthcare system, she couldn’t cope anymore whilst waiting two years for community placement. He remained on the neurology ward awaiting transfer to a managed care setting for 166 days. As a result of being confined to the hospital ward he developed a pulmonary embolism requiring blood thinning treatments, and also a degree of institutionalisation resulting in the development of non-epileptic psychogenic seizures. These resulted in further visits to the Accident and Emergency Department and over-treatment with anti-epileptic drugs. Finally, a care package worth 250,000 euros per year was approved and he is now in a managed care environment, and much more stable and content. Darren is one of our most vulnerable members of society, with complex neurological and medical needs, who is now thriving in a managed respite environment, but having gone through intense excessive and inappropriate utilization of healthcare and financial resources to get there.

*Not his real name.

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Married To Epilepsy

My husband is now fifty three years of age and has Focal Epilepsy. He has been seizure free for the past five years.

I have lived with his active epilepsy for twenty five years of our thirty year marriage. During that time I dealt with the rearing of a family of three children, holding down part time jobs and dealing with his condition. It has affected my life and that of our children on many levels but in particular as follows;

a. Financially
Employers distrust people with epilepsy leading him with no option but to become self employed. This meant that our financial position has been very erratic and at some times perilous.

b. Isolation
Epilepsy is a condition nobody wants to talk or hear about. We hid his condition from family, friends, employers, colleagues, etc. Don’t get me wrong, they all knew he had epilepsy but nobody ever saw him having a seizure. I felt I was totally on my own and still do!

c. Personal Relationship
I feel I have carried this family, shielded my children and my husband. At times he was like another child in the family.

d. Stress
Watching my husband having at least two seizures a month for twenty five years caused enormous stress on me personally. He didn’t drive for eight years so I was driving everyone everywhere including driving him to work. It also affected our social life as we always had to leave parties or gatherings early. Sometimes we could not attend!

Let me add that my husband is the most courageous, honest and upright person I know.

EPILEPSY IS A VERY LONELY PLACE.

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