Rachel was diagnosed with epilepsy after given birth to twin boys. She shares her story of living with epilepsy and how her condition affected her bonding with her children.
I was first diagnosed with epilepsy after having my twin boys. I had a difficult pregnancy and a traumatic birth, which meant my hormones did not regulate after birth, this hormone imbalance is what caused my seizures.
My first seizure was when my boys turned three months old (March 2020), a full tonic-clonic seizure which lasted about four and half minutes.
I lost consciousness, I lost concept of time, I had no idea where I was until I was already on my way to hospital. I then had more tonic-clonic seizures on the 4th and 5th month milestones and was diagnosed as epileptic.
Epilepsy ruined my bonding with my children. I was afraid to pick them up, to hold them, to do things with them in case I collapsed.
I fell into post-natal depression alongside my epilepsy and struggled to balance the two. Luckily, lamotrigine worked quickly and got me stable.
Once I was stable, I started to bond with my kids. It was difficult not driving, but COVID hit, so I did not feel like I was missing out not being able to drive as no one was allowed to go anywhere.
I went on long walks with my kids, looking at flowers and getting fresh air and it let me feel independent again.
I went back to work once the twins were nine months old and as I had not had a seizure, forgot that I even had epilepsy at work.
Then I had a seizure one lunch time in my classroom, luckily a child saw me go down through the window and a staff member was coming through the corridors at the same time, so my seizure was timed accurately.
This has happened twice at work. It made me nervous to be in a class by myself, responsible for 30 kids but the “what ifs” always came to the forefront of my mind.
My manager put me into a non-class contact teacher position while I found my confidence for teaching again since the seizures.
I struggle to remember children’s names in class and frequently forget my words and sentences. Pupils are extremely helpful and always help me pick up where my memory stops.
My seizures have caused some damage to one of my nerves that communicates between the brain and the eyes, so I must use pink tinted glasses, pink paper, pink overlays, and pink tinted screens to help me at school and home.
Reading used to be one of my biggest pleasures, but I need to use these things to help me.
Living a normal life
I started living a normal life, I got my licence back, was able to drive my kids to fun things for us to do ourselves, I was having fun!
My confidence was back at work, I was getting to be myself and being close with my husband and friends as I was starting to live life.
Then in August, I had a five-and-a-half-minute tonic-clonic seizure with torticollis in the neck.
I was in agony for days afterwards and was signed off work. It was devastating, I felt like I was losing everything I had just gotten back. I was back to being useless and losing huge parts of myself again.
I could not get back to archery (another hobby of mine) also I struggled to read because I was having seizures, so I lost my stress coping mechanisms.
Also, I started on new medication and started having sleep seizures. The exhaustion and pain the morning after a sleep seizure left me unable to function in a basic way through the day.
I lost a month of time in my memory to sleep seizures. It is frustrating to lose parts of your life with no reason or any clues to help pinpoint what has happened. Time has just magically disappeared.
Teaching my children what to do if a seizure happens
Now that the twins are five, we have told them properly about my seizures and what might happen.
They do not fully understand it yet, but we have protocols in place to help me if I were to have a seizure and we do seizure drills every so often, so they remember what to do.
They have taken it very well and take their responsibilities seriously when it comes to getting help from neighbours or our wider community if we are out in the streets.
They have become so grown up and sensible with such a huge responsibility to get help if I have a seizure on the street that I am proud of them but also regret forcing them to take this on with no choice.
Epilepsy for me has been more than seizures. It is constant memory difficulties, struggling to remember names of people I have known for years, forgetting words for simple things.
Also, chronic pain in my neck, shoulders and back from seizures.
It is anxiety waiting for the next seizure to happen or compartmentalising my life, so that my old life can return, if only for a little while.
I have small tremors in my hand, I have muscle weakness with my medication side effects and struggle to carry things, so I must use a suitcase/granny trolley to do shopping independently. I have timers to remember to take medication.
But I am more than epilepsy. I had a period over the last few months where epilepsy invaded every aspect of my living being. But have been seizure free a few weeks now and getting little bits of my life back.
I am more than epilepsy – I am a mum who loves playing with kids in whatever way I can manage.
I am a teacher looking forward to going back to school and supporting children in their learning.
I am a woman who loves to go for a walk or read my book with a cup of tea. I am a friend who will be there for anyone who needs a shoulder to cry on or a listening ear.
If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at dcoates@epilepsyscotland.org.uk or call 0141 427 4911.