Elspeth was diagnosed with epilepsy when she was just 19. She shares the challenges she has faced whilst living with epilepsy and how different types of seizures affect her.
How did you feel when you were first diagnosed with epilepsy?
I don’t know, maybe bewildered when it was first mentioned. It took so long to conclude I actually had epilepsy and it was explained in such an open-ended – wait and see – manner I just went with the flow.
What type of seizures do you have? How does it affect you?
Nocturnal tonic-clonic seizures, atonic seizures, and atypical absence seizures.
I was 19 when I had my first nocturnal tonic-clonic seizure. I had several over the next couple of years and then they stopped.
When I was 23, I had an atypical absence while driving. The only reason I know is that the police driving behind me told me I had been driving on the wrong side of the road.
I remember nothing between feeling a weird aura-type sensation and seeing the blue flashing light a mile further along the road.
A few years passed before atonic seizures started. I’d have one every couple of years or so until 2012.
I’d get the same weird sensation then next I knew someone would be asking if I was ok and tell me I’d had a drop attack.
In 2012, I had another absence, during which I sustained 3rd-degree scald burns to both forearms and hands.
I was home alone and started to feel that aura sensation so made my way to my “safe place” – my bed and I remember getting on to it.
I then became aware I had really sore hands. During my absence seizure, I had gone back downstairs to the bathroom, turned the hot tap on, and put my arms under boiling hot water.
I have absolutely no recollection. An 11-week stay in hospital with multiple operations, skin grafts, and amputation of my left thumb and almost all of my index, middle, and ring fingers.
Then in 2020 without any warning, I had an absence again. Like the first time, I was driving and thankfully with a passenger who was able to stop the car.
What challenges have you faced since being diagnosed with epilepsy?
Overcoming the feelings of being weak and learning to accept I need to manage my stressors. I felt I was seeking special treatment, and I hate that.
Keeping the heed! It would be so easy to over analyse how I feel and become completely absorbed trying to determine if something was a stressor I need to avoid.
Coping with my nearest and dearest. They try to protect me and keep me safe.
I often feel smothered and controlling my frustration is difficult, but my husband especially sees things about me that I don’t so it’s wise to listen to him when he tells me to slow down.
Seeing him hurt is horrible. It’s taken time to learn its best to be honest when I don’t feel well.
Having times I can’t drive, managing logistics practically as well as dealing with feelings of being a burden and loss of independence.
Dealing with lack of support at work. Most people are great and really help me, but there were some who used to make me feel I was playing on having epilepsy to avoid duties and get more time off.
It took my burn seizure to prove to them I did have epilepsy!
Another challenge I have just now is not worrying about the future. The thought of how symptoms of menopause (poor sleep, hot flushes, palpitations, etc) might affect my epilepsy terrifies me.
We always say that epilepsy is more than seizures. Do you feel this has been your experience?
Definitely! A seizure itself leaves me feeling a bit dazed and confused at the time, then tired and sore for a few days.
It’s what I do during a seizure that’s dangerous and the unpredictability of when they’ll happen has the biggest impact and creates the knock-on effects: worry, fear, stress, anxiety, loss of freedom, and limitations to activities. And the guessing game trying to avoid them is a constant head occupier.
Do you feel that epilepsy has stopped you from doing what you want to do?
Overall, I’m where I want to be and doing what I want to do, but I do feel I stop short of my potential because I don’t want to risk triggering seizures.
The fear of having a seizure means I won’t drive the 200-plus miles to visit family and friends on my own. So, epilepsy stops me from seeing them as often as I’d like to.
Less significantly, having epilepsy has stopped me from being as socially active as I might have been. To avoid becoming overtired I go home early on nights out.
I didn’t even see my wedding reception to the end. It stopped me from drinking any more than an infrequent taste of alcohol. I’ve not experienced being drunk – maybe not a bad thing?
Indirectly, if I didn’t have epilepsy I would still have all my fingers. Not having fingers means I can’t play my pipes or wear my wedding ring.
We hope to find a way to adapt a chanter so I can play, but it’ll never be to the same standard that it was.
When I burnt my hands my husband had to cut my wedding ring off my finger, that was a huge emotional hurt in itself.
What’s left of my finger is too short and bulky for a ring. We do intend to incorporate the gold into a pendant but it’s not the same.
What would you say to others who have been recently diagnosed with epilepsy?
Don’t try to fight it, learn to work with it. We may feel weak, but we all have different strengths, and save your energy for yours.
Be honest and speak up, you won’t see triggers, stressors, or limits if you’re kidding yourself, and people can’t help you if they don’t know what’s wrong.
Stay sensible, and accept help if it’s offered when you need it. We might create bigger problems by being stubborn and pushing past our personal limitations, it’s not a weakness, but a strength to acknowledge that.
It can also help people who care about you to do things for you – they may well feel useless.
Don’t fret if standard advice isn’t right for you – you might need to experiment a little.
I’ve found rather than going to sleep in a dark, quiet room I get better sleep if the light is on and there is background noise, it keeps me relaxed.
Medical knowledge and understanding are constantly evolving. Be informed and keep a check on current thinking.
If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at email@example.com or call 0141 427 4911.