Epilepsy and Me

I started having fits  when I was 11 years old. I was having  grand mal seizures about once every three months. I would just fall and shake without any warning. At the time it wasn't that big a deal, yeah it was confusing and the amount of injuries I had was continuous, but it was livable. When I was 17, I went straight into training to be a nurse. I was having a great time yet over the next two years everything started to change. It increased to a seizure once a month, then once a week and it got to the point when it was every other day.

Understandably I was kicked out of nursing, lost a lot of friends because I was now their patient and became nearly housebound. I was 19 years old, had just moved into my own place and it was tough. I had two or three friends who stuck around but the rest went off to live different lives, a life that I could never live and I would never hold that against them. Not now anyway.

Five years on,  I was 24. On really bad days I was having 2 grand mal's and over 20 Petite Mals a day. The only time I ever left the house in these five years was on Sunday's. My assigned day to be taken out by relatives was Sunday's so I would plan all week on what to I was going to wear and how I was going to do my hair. I loved  Sunday's and still do.

I was 7 days away from my 25th birthday when I got a phone call from my specialist saying they wanted to see me immediately.  When I got there, I  was told that they had decided to operate. 

My dad is  my hero, he's the man, and the first thing I saw when I woke up after my op was my Dad sitting at the end of my bed crying. It's devastating to see your Dad cry! I thought I was dead and that's why he was crying.  I wanted to shout to him that it was ok but I couldn't move. I tried so hard but during the operation I'd had a stroke. It took me over a year to learn how walk and talk properly and six months to learn how to read and write again.

A year on and the good news was I had been seizure free for 384 days. I had moved back into my own house, was in a new relationship and had started a new job. Everything was fantastic but while watching a firework display it started again but it was different this time. I wasn't passing out and shaking anymore instead. I was having like an abnormal consciousness, memory loss, Hallucinations (visual, hearing, touch, smells), Deja Vu & Jamais Vu and nausea.

I was diagnosed with Temporal Lobe Epilepsy resulting in partial seizures and complex partial seizures. I had too much brain damage to be able to fix it and I had a probable Hypothalamic Haematoma  I was told to take the drugs and hope for the best.

That was nine years ago. It took at least 4 years to get back to my old self again The trick was to surround myself with people who needed my help. I needed to feel useful again, to feel like I could mean something to someone, to not feel written off.

I have a  minimum of  seizures a day now. Sometimes you wouldn't notice but there are times when this condition is impossible to disguise and that's when the fight within you begins. Do you let everyone know or do you put it out of sight by putting yourself out of sight?