THE BLOG

Dealing With An Epilepsy Diagnosis

17/03/2017 17:09 GMT | Updated 17/03/2017 17:09 GMT

So the purpose of this blog is to see the funny side of life. Life may be very difficult right now but I still have my sense of humour. I can only compare my life at the moment to one of a slug. I spend most of my time horizontal and moving slowly from room to room. The difference is I have arms so while I may feel as useless as a slug right now I still have the ability to type.

It all started when I decided to buy some trainers for Christmas. That was a big mistake. Then in January we booked trips for the summer (first time to take both kids abroad). I tempted fate and by the end of February last year I was in a wheelchair.

Countless hospital appointments, vials of bloods taken, every test the NHS does and finally I was diagnosed with epilepsy. Atonic and myoclonic seizures. Atonic literally means loss of muscle tone so at any given moment my body becomes like jelly and collapses. I have knees like a three year old with grazes and bruises all over. Myoclonic seizures are jerks, shakes, twitches, verbal tics and physical tics. Think Tourette's style for the verbal tics.

My personal favourite was shouting "cock" in the middle of the maternity unit at hospital while Chris was creasing up laughing next to me. That's where my sense of humour has to kick in or I'd never leave the house!

A couple of weeks ago I was also diagnosed with fibromyalgia. Add in my previous psoriatic arthritis diagnosis and I collect chronic illnesses like kids collect football cards. Fibromyalgia means I don't get into the final sleep stage so I don't get restful sleep. I can (and do) sleep all night and day and still feel constantly knackered.

So now I'm on epilepsy medication for life. I take Keppra which is most famous for "Keppra Rage". Yes that is a real thing. Imagine a toddler tantrum in a adult's body with the odd bout of Tourettes swearing and movement disorder. It's not pretty. Thankfully I'm getting over the Keppra rage as my body gets used to the drug. Keppra also knocks me out as I'm on a very high dose. The chances of me being awake at any given point at the moment? Slim to none.

Cooking - well that is fun. Bearing in mind my previous cooking method was wait until the smoke alarm went off and then remember I had something on the grill. My current cooking methods are rolling around the kitchen on an office chair so I don't fall and putting a meal in the microwave.

I see many posts on Facebook about people who achieve amazing things like 5k runs, Tough Mudder etc. I'm over here like yep, I walked to the kitchen and got my own drink *takes a bow*. My goal is to be able to walk to the local shop and buy a loaf of bread. Maybe a magazine too! Life goals right there.

So pretty much the only thing I can do at the moment is write and if it can raise some awareness of chronic conditions then all the better.

For more information about epilepsy, go to www.epilepsysociety.org.uk

If you would like to talk to someone about epilepsy, call their confidential helpline for information and emotional support.

Epilepsy Society Helpline 01494 601 400 Mon and Tues 9am-4.30pm, Wed 9am-7.30pm