Guest Blog: I Have Epilepsy

For the first time ever, I'm turning my blog over to someone else to share their story. In this instance, it is my amazing sister Nicki, who as you will read, has been through a lot recently and is doing incredibly well in her recovery. Here's Nicki's story:

After recently seeing a number of friends and family, particularly Daniel, open up about their own health to improve mental awareness, I was inspired to write this.

There is a lack of awareness about numerous different medical conditions and the number of individuals affected. One reason for this is that many people are not open about their conditions. I was definitely one of those people. I only told my closest friends and family that I have epilepsy. I have had a few seizures in front of friends but they didn’t know as I just blacked out for a few seconds. Only myself and my husband knew it was a seizure (many people aren’t aware of what seizures can look like). I hardly ever spoke about my medical condition. I didn’t even like talking about it with my husband or parents.

I have had epilepsy since I was 10 years old. It has been part of me for two thirds of my life (as I’m now 30). The last few years have not been fantastic as my epilepsy has not been under control and I was continually trying new med after new med and increasing doses and so forth. My doctor introduced the idea of epilepsy surgery a number of years ago now, which I was not keen about at all. I actually left his office crying the first time he brought the idea up. He talked about it over the years and I researched it weighing up the pros and cons. I then realised that I couldn’t go on the way I was, constantly having my meds work for a short period of time and then I’d start having seizures again.

I had neurosurgery (left temporal lobectomy to be specific) 6 weeks ago and am now recovering. I actually think I’m doing really well after such a short recovery period. So far so good. I am yet to have a seizure so let’s hope that lasts forever. I do not feel like I have suffered from any side effects, so anyone out there considering the surgery I highly recommend talking to your neurologist about it (I know it’s early on for me). I have been lucky enough to have a wonderful husband, family and close friends to support me throughout this recovery period, which I’m sure has made a difference. The last few months have been a major time in my, my husband’s and my family’s lives and support is really important for everyone. I originally did not want to tell the world about my surgery, but more and more people knew in recent months and all I and my family have been receiving is love and support. I was quite astonished with the messages and gifts people sent me over my initial recovery period. It’s made me realise that being open about your own medical condition is actually highly beneficial as it increases awareness as well as your support network. I still have my closest friends around me who have watched me recover over these last few weeks but also know that many people (around the world) care about me and will always be there for me.

I have a number of close friends and family members with medical conditions, including psychological, neurological as well as others. Some are now open about their conditions whereas others only talk to their closest friends and family members. I completely understand why people wouldn’t discuss their medical condition with others, as I didn’t for 20 years. However, it is important to improve the awareness of these conditions, including just how common many are in society. I hope after reading this (and other recent blogs, such as Daniel’s) others also feel encouraged to open up about their medical conditions.

If anyone with epilepsy or any other medical condition want to contact me, to ask me any questions, to chat or for support, please feel free to on nickicousens@yahoo.com.au