So along comes the day I had been looking forward to, the Young Epilepsy Champions Awards. I was very much looking forward to an evening out and hearing some inspirational stories. I rested up on the day and the day before and I managed to last the whole evening. I wanted this to be a totally positive post but in the interest of being honest and painting a true picture of life with epilepsy I have to be honest and say that however brilliant the night was my epilepsy and pregnancy sickness being what it is I had a really horrible episode at 2am, and as ever I’m grateful to Chris for being there. I clearly am doing too much even when I do next to nothing but I shall leave the negative at that. It was a much needed night out with my sister and husband just taking time out to relax.
I want to say thank you to the Young Epilepsy Team, a few days before I had an email saying they had reserved me an aisle seat so I could get out during the ceremony if I needed to. This was very thoughtful and greatly appreciated. Well it was either that or they just didn’t want me throwing up on the carpet! :-)
Living with Epilepsy
This post is just going to be a general overview of what it is like to live with uncontrolled epilepsy, and to try and give you some insight into what it is like for those around me. I know people have it worse than me, then some have it better than me, this is just a snapshot of our life. The two weeks that have followed the TC have been two of the hardest of my life, because of the epilepsy, pregnancy sickness and because of things that have happened to my family. In this blog I have always tried to find the balance between being honest and respecting people’s privacy, and in the interest of their privacy I won’t go into detail, but it has been an incredibly hard time for everybody. There have been a few positives such as the meeting I was asked to attend as Patient Representative (blog post to follow shortly) and also being asked to cover the Young Epilepsy Awards as a writer, and I am clinging to these in my weaker moments.
Neurology Appointment x4
This appointment came just five days after the TC and four after I was discharged from hospital. I was now taking Clobazam daily, still very sore from the physical injuries, tired and confused. I’d spent the days in between resting up; well I hadn’t really been given an option in it. Also in the week and a bit since the seizure we have had a lot of bad news as a family, it has been a hard week. This post isn’t as detailed as I’d like but as I say my memory of the appointment isn’t the greatest.
I’m sure this blog post was destined to never be posted, and after the last one is pretty tame. My memory of these two appointments is hazy now as I’m trying to cover things that happened the best part of four/five weeks ago and bare in mind this was prior to my epic face plant down the stairs but I shall do my best, so this is a quick summary to bring us up to date. The blogs following this one will cover the aftermath of the TC seizure.
The thing I had been fearing for so long and knew was coming happened on Friday; I had a tonic clonic seizure and fell down the stairs at the tube station on the way to work. I hate that I am even having to write this post but I’m writing this post so soon after as I’m hoping it will be a bit therapeutic and help me make sense of it all. However I’m currently taking Clobazam daily, am a bit confused still, tired, in pain and the events are a little hazy to say the least so this has been put together with the help of my sister, husband and notes from the hospital.
I had been off of work the previous week feeling rough with both general pregnancy and epilepsy, however I decided that I would be going back to work on the Friday. Why did I decide to do this against doctors and family advice when I didn’t feel 100%? Because I didn’t want people thinking I wasn’t making the effort, or saying that I was taking liberties with the amount of time off I was having. I was trying to prove that I was pregnant and not ill. I had felt unwell with the epilepsy the night before and should have taken Clobazam but because of how groggy it made me and knowing I had a 0445 start the next day I made the decision not to take it. I always tell people to listen to their bodies but in that instance I didn’t and I have paid a price my decisions.
My names Faye, mostly known for being a tea addict and keen runner and swimmer. I'm 32, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.