So today is another of the many awareness days that appear over the months and you will see supported across social media. This one is particularly close to my heart as I am an Epilepsy warrior and I would like to share my journey of growing up with epilepsy with you all, in order to raise some awareness around this illness.
What is Epilepsy?
Epilepsy is a condition cause by a sudden surge of electrical activity in the brain.
Epilepsy can affect a wide range of people of all ages and in many different ways. There can be any number of triggers and reasons for seizures and I can only really speak from my own experience. People can also have an epileptic seizure even though they may not have epilepsy or have been diagnosed.
At 4 years old my mum and aunt knew something wasn’t right with me. My mum would be brushing my hair and talking to me and getting no response. She thought I was just plain ignoring her (after all that’s most kids isn’t it, not listening to their parents?), but that wasn’t the case.
My mum took me to the GP who just decided that as I’d recently lost my grandmother, that it was just how I was coping with it. My mum reluctantly went away, trusting the Doctor knew what they were talking about but still not really believing it, but what else could she do at that point.
When I was round 7 or 8 my aunt was listening to a radio show in which a Doctor, a Neurologist, was discussing epilepsy. All the symptoms he was describing, were signs that I was displaying. She rang my mum and told her to take me back to the GP for what must have been the hundredth time and ask for a referral to a Neurologist.
Eventually the GP listened and I was referred to a specialist and received a proper diagnosis aged 8.
My Initial Diagnosis
Initially, I was told I had Petit Mal, a milder form of epilepsy that sees me going into trances which could last just seconds. I was put on medication, 2 different kinds and one was absolutely vile, so I soon developed a method of taking them quickly, the bad tasting one first, followed by the “nicer” one.
I was told that by age 14 I would “outgrow” this phase. Great I thought that would mean no more problems, but wham, what they didn’t tell you was it could develop into a different type of seizure, or maybe they did but I don’t remember.
BAM! At age 14, I started having grand Mal seizures/convulsions. It was apparent that these were triggered by 2 things, hormonal changes (as I hit puberty) and sensitivity to lights, known as photosensitivity epilepsy.
This meant I wasn’t allowed to attend concerts or disco’s/parties where there would be flashing or strobe lighting to avoid the risk of a seizure.
So my activities had to be closely and carefully considered.
So growing up being restricted in taking part in things all my friends were doing, I became a book worm sitting in my room reading for hours or listening to the radio. I became an expert at taping the Sunday Top 40 on cassette!
Now I only ever had a small number of grand Mal seizures, but they were enough to knock my confidence at times and I really thought that I would never be able to just do “normal” stuff.
School – I enjoyed school, but that wasn’t without it’s challenges. At Primary school I once went into a trance whilst in PE and my mum was called to school to help rescue me from a piece of apparatus (can’t remember which one).
Senior School was tougher. This was more so after I had a fit during a lesson. I was sat at the front of class and didn’t know the light at the back of the classroom was faulty and flickering and this caused me to have a seizure. I never knew when I would have one, I got no warning signs, no aura’s, no smells. I would just wake up from a fit and only at that point would I know I’d had one. After this people started avoiding me, because they didn’t understand it and thought they might catch it. Epilepsy isn’t contagious. This made life at school very tough.
Homework was also hard to keep on top of. I would spend hours on homework, sat at the kitchen table, unable to read or watch TV until I had completed the homework set for that day. This was difficult if I had my Petit Mal absences during classes as I would miss parts of the lesson. I got by and passed my GCSE’s with average results. I didn’t receive any additional support from outside bodies. My parents did what they could but my dad was hard at work all day and my mum had a limited education herself as she had to look after a sick relative the majority of the time, so missed out on some of her own education.
College – college wasn’t so bad as I would do this on day release from my job. Staff were more understanding of the condition and several students were brought together to educate the staff on our experiences of the illness so they could be fully informed on how they could help their students.
Thankfully I only had about half a dozen grand Mal seizures doing these teen years and they then stopped. 1987 is the year ingrained in my memory as the year I had my last Grand Mal seizure. Isn’t it funny that some dates stick in our minds?
Whilst seizures are unpleasant, there are some stories to come from these. One being I was eating a bowl of soup once and my mum walked in to find me having a fit at the dinner table, but thankfully the soup had been moved out of the way. She asked me if I had moved it knowing I was about to have a fit, but I didn’t as far as I knew. I was so lucky not to scold myself, I could have been face first into the bowl.
Work – I work for the NHS and have done for over 30 years. My employer have always been fantastic. I’ve always declared my illness and it’s never been a problem for me at work. Everyone has always been so understanding.
My mum would describe that when I was in a convulsion, I would gain superhuman strength, bit like The Hulk and it was very hard to move me into the recovery position because of this. She even found me holding onto a mixer tap in the kitchen once and had to try to Karate chop to make me let go so she could get me onto the floor and into recovery.
After a seizure I would be physically exhausted, unable to walk and would just sleep for several hours. Total weakness would overcome me and I felt helpless, almost like a newborn baby. My mum would always take care of me, cover me with blanket and watch over me whilst I slept/recovered. She’s amazing!
Getting on with Life
Through careful monitoring and assessments, I went on to learn how to drive in my late teens and after 4 attempts finally passed my driving test. This meant I had a bit of independence.
By the time I met my partner (now ex) and decided to start a family, my dependence on medication had decreased and I was taken off all medication and so went on to have 2 beautiful children now aged 17 and 13. Both are fit and healthy. The decision to have a family was discussed at length with medical professionals as medications can affect the unborn baby and so it’s really important to make sure you take the right steps.
As years have gone by, I have learnt to just get on with life, go to concerts (as long as I’m careful and with people who know of my condition). I can’t let this control me all my life and have managed up until now to just get on with whatever is thrown at me.
Unfortunately, because epilepsy is a Neurological condition, it never really goes away, but can, as in my experience, lie dormant.
A few years ago, I started to experience tremors and twitches and got concerned and went back to see my GP as I knew my epilepsy had re-surfaced. Again this was due to a shift in hormone changes due to my age (over 40). I am now back on medication and see my Neurologist annually.
So as you can see, life throws you challenges, but you just have to keep fighting.
I do hope this blog has helped raise awareness of the condition from my perspective. Please feel free to share with anyone you think will benefit from this or anyone who has epilepsy. I would love others to share their stories and experiences too.
Support and Information
Further support and information can be found from the Epilepy Society here
Until the next blog.
Lots of love ~ Vicki xx