I have had nocturnal epilepsy since I was 23 years old and I am now 43 years old. I am happy to chat to you or anyone to share my story. I am a mum of 3 boys and I work in a rewarding yet demanding job so I can prove you can still have a normal life living with epilepsy. Even though I had seizures with my last pregnancy. I am happy to say I am 4 years seizure free.
On September 29 2014 my world was turned completely upside down, I was 28 weeks pregnant and ended up having 5 seizures, ( I had been 10 year seizure free). After being intubated and to wake up and not know where I was or not know if I had my baby or not is one of the most terrifying things I have ever had to experience. I really don’t remember a lot but that is one thing I do remember. I was unconscious and pretty much out of it for days. So I think I got out of pretty easily as I was oblivious to all of it. It is husband, my family, my husbands family and my friends that had to go through all the stress. I feel so bad that my son found me having the seizures, but I know that he pretty much saved my life. As it had been 10 years since I had last had one, I normally get over them pretty quick, but this knocked the absolute ass out of me and it has taken almost 12 months for me to recover mentally, physically and emotionally and having my independence taken away from me is something I didn’t cope with very well. To the Drs, nurses, ambos and especially the midwives who just do an amazing job, I will be ever so grateful to all of you. To have 3 healthy children we do feel blessed.
I suffered from post traumatic stress, but I can say now I am doing great and feel the best I have felt in a long time. I have learnt a few things in the past 4 years…
- I am too young to die and will be happy to turn 44 this year.
- Sympathy is the last thing in the world you want or need, it is your health that is absolutely everything
- Family and friends are there for you through the good and the bad, especially my husband and my sister definitely deserve a medal for putting up with me!!
- I feel very lucky as my seizures have been controlled through medication. There are so many adults and children who have seizures every day and they aren’t controlled which breaks my heart as there is no cure.
- So many people go through way worse things in life and you never know what battle some people are fighting.
Whilst I am feeling great and I have been seizure free for 4 and half years, there is still no cure. I will be on medication for the rest of my life, which sometimes have adverse effects. In saying that the side effects outweigh having a seizure.
I hid having Epilepsy for such a long time as I didn’t want to have a label attached to me, but as I get older and even though it almost killed me and my beautiful boy, I am trying to be the voice for the people who are too ashamed to talk about it.
Even though there are 40 different types of Epilepsy and varying degrees, I am just trying to show people you can live “a normal life” with Epilepsy. There are people who are disabled from this horrendous condition, I really feel very lucky compared to so many people suffering.
It just breaks my heart seeing young children being diagnosed and the there is no cure. I know how scared I am when I eventually come out of a seizure. I am always hospitalised and I get no warning I am going to have one (lots of people have an aura). I am confused, emotionally, sore and I would hate to think how that feels for a young child.
For myself personally, I have had to put myself first as in I have to get a good nights sleep, not get too stressed, eat healthy, stay hydrated (as all of these can trigger a seizure if I don’t look after myself).
Even though there are no guarantees with my medication, I know that I have done everything in my own power to prevent having any more.
I have a very supportive husband and both of our families are. I am not sure what I would do without them, when I am having a day when I my medication knocks me on my butt and I have to rest which I still find frustrating, but I have learnt to listen to my body.
The ultrasound photo was 3 days before my seizures and the black and white photo was of Noah when he was about 8 weeks old. I had hardly taken any photos of him as a newborn and this is around about when I can start remember starting to feel better.