N.E.A.D Myself and I

My name is Louise and I am part of the Friends In N.E.A.D team. Two years ago when I was diagnosed with N.E.A.D, everything in my life just seemed to stop. I had to stop working as it was a health risk due to the fact that I worked in childcare.

I stopped going out with friends and was very involved in the church I attended, I stepped down from singing, from working with children, from sharing the word and I also stopped travelling, especially going abroad. which I loved so much. Yes stopping all of this minimized my seizures as all of the stress in my life was gone, but I started to become depressed which was not like me. I was a happy person who always had fun and never took life too seriously. I was, as my friends called me a social butterfly, who loved life, but this all slowly started to change.

The once happy confident woman that I was, slowly started changing into a sad, lonely, never out always in and slightly depressed person, who was becoming scared of going out in case I had a seizure in case something happened to me while I wasn't with it. I was also worried that I might embarrass myself or others and also the fact that when I came round I was confused and often had memory loss.

I was 25 years old and my life had come to a stand still. My memory was bad most days, I was constantly tired and I was no longer doing anything I loved. After a few months of this I started getting upset, down and slightly depressed. This was when I decided enough was enough, I was having it no more, something had to change. I wasn’t going to be depressed, I wasn’t going to head into the a dark place or let the fact that I had seizures keep me from having any form of life. Yes ok I couldn’t go back to work, yes I can’t go out on my own due to the fact that the seizures come without any warning and have no pattern to them but I wasn’t going to stay in and let it confine me to the house for the rest of my life. After all I was 25 and had many many many more years ahead of me. So I rang up my best friend and made a plan for us to go out for coffee, start small and do it one step at a time. So that’s what I did and the next day after my friend finished work we headed to starbucks and had coffee and chatted with each other for a few hours. It was great. Yes at first I was self conscious and constantly thinking "oh gosh I hope I don’t have a seizure" but after an hour of us sat in the coffee shop talking, I started to relax. I knew I was safe as I was with someone who knew about what I was going through and also knew what to do if I did have a seizure. Luckily I had coffee, had a nice long chat with my friend and all was well. This gave me the confidence I needed to start going out again with friends, gave me the confidence to tell other friends and family members all about N.E.A.D and to explain what to do if I was with them and had a seizure. I didn’t go out all the time and was no where near the social butterfly I used to be but I did have a bit more confidence in leaving the house every now and then to either go for coffee or a small walk around the park with friends or my parents. The first year of having N.E.A.D was not an easy ride. For most of the year I had no idea what was actually wrong with me and had never heard of N.E.A.D before. It took a full year of going in and out of A&E, having hundreds of different tests and seeing loads of different specialists. Some just dismissed me and told my parents if she’s ill and having seizures you need to take her to A&E, not wait here for her appointment, even though they where a neurologist. However, I eventually saw the right person who took one look at the videos that my dad had taken on his phone and he knew straight away that it was N.E.A.D. Within a year and half I was finally with referred to a Neuro Psychologist.

This was when things started to really change. Within two weeks of being referred, I had seen a specialist and was put on a four day course over four weeks.

During the course I was told about N.E.A.D, what it was, what to do when I had a seizure and ideas on how to manage and cope with it. We talked about how our bodies are like pressure cookers and that people with N.E.A.D don’t know how to release the pressure (stress) that stores up in the body ending in a seizure. We also talked about how we could learn to let the pressure out and even eventually, with help we could learn to manage and maybe even stop the seizures so that we can go through life with little to no seizure. However just like anything this will take time, practice, learning to recognize when we are getting stressed and when our slow cooker is piling up. Learning how to ground ourselves in order to not prolong a seizure etc, I was also then put onto one on one sessions in which my specialist would work with me to try and figure out the underlining issues causing the seizures and also ways in which I can help myself. It is now two years later and I have started to do loads more than I did before. I now go out more with my friends and have even been on a few girls weekends away. I have also been on a family holiday to Kent. In November 2017 I even went aboard for a few days with my mom and grandparents and enjoyed it. Yes I have seizures and yes sometimes I have them while I’m out and about. Yes they are a pain but in no way will I let these seizures define who I am or what I do. No I can’t work at the minute and may never be able to work in childcare again due to the seizures however that doesn’t mean I have to stop living a life. It doesn’t mean I have to be confined to the walls of my house or that I can’t have fun. I can’t do certain things anymore like go somewhere with flashing lights, as it now causes me headaches which then causes me to have seizures. Yes there are a few things I can no longer do but I don’t let that stop me. I just have to find new hobbies and interests and do the things I can do, but I find looking for something new and exciting to do, well, really exciting. I also have gotten back into reading which I use to do before and have no idea why I stopped.

Having N.E.A.D also brought me along to this wonderful support group, which I love helping and trying to bring awareness to as a cause. I have always loved helping causes etc but now it just happens to be for something that affects me personally. I am trying to raise awareness for it which is why I’m writing this blog and have decided to write a few more blogs as well. As time goes on I will be doing more and more stuff that either I stopped doing due to the seizures or I will be trying new things as well.

I want to bring awareness to others about it so that it becomes more well known and understood by others.

I also want to help those who are like me who have N.E.A.D to get through it, to know that they are not alone but also to encourage those with N.E.A.D to step out and to not let it get you down. To not let it confine you to the walls of your house, to step out and live life as well as you can despite having seizures, despite having limited funds or not being able to do something that you use to do. Lets not let N.E.A.D define who we are. Lets live life and tell N.E.A.D that we are in control, that even though we may have seizures that randomly happen. We may not know when or how long they will last, we may have days when we are tired, or have memory loss or are confused or forgetful but that isn’t what defines us. Life is what we make it so let’s make it rock.

In my next blog I will be talking more on my trip to Spain with my mom and grandparents, my experiences while I was there and the shock I got when I bought my travel insurance. So keep an eye out for N.E.A.D, travel and I.

I will be back soon, take care,

Louise B