As the title of this piece suggests I was diagnosed with epilepsy quite late on in life. Until that point I hadn’t even met anyone with epilepsy nor come across anyone having a seizure. Ashamedly the only thing I associated with epilepsy was seeing people convulsing on the floor. Therefore being diagnosed myself was a shock. To find out about the different types of epilepsy, their triggers, and adapting to life with epilepsy has been educational.
My diagnosis was 7 years ago and yet this is the first time that I have written about it in such detail. It has been very cathartic putting down my feelings. They are as strong now as they were all that time ago. Here is my story.
Background and diagnosis
My first recognised seizure happened as we travelled around Ireland by motorbike. There is a photo of me lying on the grass verge feeling awful having just been sick. My husband took the photo to capture the landscape and I am in the foreground ready to be cropped out at a later stage. At the time we assumed I just had motion sickness. I fell asleep on the back of the bike later on in the journey – not recommended! We brushed it off as just one of those things. Then over a course of a couple of weeks I started to get multiple “funny turns”. On one such occasion I was with my sister. At the doctor’s she was able to explain in detail what she saw, and I was able to explain how I felt. The doctor referred me immediately to see a specialist where I then went for scans and awaited the results. The next few weeks passed in a daze. Understandably I was floored when I heard the words “….you have epilepsy”. How could that happen? I was 35 years old, fit and healthy.
I have simple partial epilepsy. On the epilepsy seriousness scale of 1-10 I am pretty near the bottom. Before I have a seizure I get a strong sense of deja-vu. My face drains of colour, I can hear my voice but it doesn’t sound right. My eyes glaze over. It lasts for seconds. Yet the after effects can go on for hours. Immediately after having a seizure I feel sick and have a strong fight or flight sensation. I always fall in to the flight category because I feel scared and vulnerable. The tiredness that follows is crippling. I can sleep for hours, wake up, and then go to bed as normal and sleep through the night.
Immediate impact on my life
First and foremost I had to give up driving. I found it very difficult to surrender my driving licence. Ironically I had driven to the appointment and found myself being driven back. I am not ashamed to say that I cried all the way home. It is not until something is taken away that you realise how much you use it. My car was my independence. Everything just took so much longer relying on public transport and travelling by foot. Especially where we live as the public transport system is not great. Trips out were on a “must do” basis rather than a “like to do” due to the inconvenience. When my pride let me, I accepted lifts and offers of help. My world became a lot smaller.
We had just started planning for a family and going down the IVF journey. Our plans had to go on hold. I needed to get used to my medication, and we needed to understand the implications of the medication on both me and an unborn child. It was an emotional and confusing time. I was in my 30’s and by most medical standards we were late in starting a family. Risks were already there. Time was against us and now my epilepsy diagnosis decided to make things yet more complicated. I felt like my dream was cruelly slipping away.
Lifestyle changes to help me cope
Over the last few years we have established that my trigger is tiredness. So we have chosen to make a few changes.
Our social life is limited. I find comfort in the fact that having a child does that anyhow. Prior to my diagnosis my alcoholic drink of choice was gin. But I can’t have it now because it takes me to some very dark places. “Mothers Ruin” is an apt nickname. Just the whole mix of alcohol, the late night and the inevitable tiredness the next day are a toxic combination.
I follow a diet that maintains my blood sugar levels. I find that in doing so I don’t have peaks and troughs where I crave something sweet to try and keep me awake. Whether this is scientifically proven to help I have no idea. It works for me and I am sticking to it.
Our holidays are closer to home. I don’t want to take the risk that a long haul flight messes with my sleep pattern and could put me at risk of a seizure. It just isn’t worth it.
I combat stress by exercising and taking in fresh air. Where possible I avoid confrontational situations. I avoid anything that can affect my mood and unbalance me for fear it will affect my quality of sleep.
I nap at every available opportunity!
The here and now
Thankfully I have my driving licence back. Albeit one that has restrictions and has to be re-assessed every three years. It took 2 years to get it. I treasure it.
My short term memory is shocking. It worries me how much I forget. I try to laugh it off but it does make me feel anxious and vulnerable. I mean it is bad now, what is it going to be like when I am a lot older? Will I be able to care for myself? I don’t want to be a burden. It sounds dramatic but that is how this illness plays on my mind. I remember classmates names from 30 years ago, who the teacher was, and who I sat next to. But I can’t remember holidays I have been on or restaurants I have eaten at in the last 10 years. I just play along because it is easier – and often kinder to the person sharing that fond memory they have of you together. My biggest fear now is not being able to recall key moments in Harry’s life, hence the reason I blog.
My son has never seen me take my medication. And that is deliberate. I don’t want to worry him that something is wrong with Mummy. Children need that security that their parents are invincible. I also don’t want him to think that taking medication is the norm.
At time of writing my epilepsy is under control – but I don’t take that for granted and live with the threat that I could have a turn at any time. I have no idea how we would cope without a car trying to fit in the school run as well as getting to work. It doesn’t even bear thinking about.
I still get angry. I am angry at those that don’t know how lucky they are. Those that have minor medical conditions that are unpleasant, but that are not life changing and have far reaching consequences. Those that can’t see the positive in the every day.
Some days I get a bit down with it but then I give myself a good talking to. I just have to get on with it. There are people coping with far worse in the world. If this is the worst that is going to happen to me then I consider myself to have got off lightly. I have a good job, I can still do all the activities I did before (albeit it in moderation), and I have an amazing and supportive family. I certainly don’t want anyone’s sympathy. Despite the medication, the stress and all the worry during pregnancy I have a perfect little boy. My epilepsy doesn’t define me.
There really is nothing to get down about. It is all a matter of perspective.