I am often asked what it feels like to suffer from epilepsy and it’s really very difficult to describe. It differs for every person, as no two seizures are alike. If there was a Richter Scale for seizure activity, I think it would be very difficult to categorise the type, strength and severity of each seizure into neat little numbers. They’re not earthquakes, after all, and are even more unpredictable.
I never was shown my sleep-deprived EEG results, but I was informed that there was plenty of “abnormal” activity and this picture is pretty much what I imagine things to have looked like, as I’m aware of the troughs and peaks of brain signals. With epilepsy you also get these jagged spikes forming as the activity goes off the charts.
My friend Maggie has written a wonderful blog describing her own experiences, feelings and emotions. It is she who has inspired me to attempt to describe my own. Thank you, Maggie – your writing is wonderful and so thought-provoking!
Unlike many people, I don’t tend to get the “aura” – or if I do it gives me only seconds to attempt to reach a safe place, which isn’t anywhere near long enough if I’m out and about (the Numero Uno reason that I no longer leave the house by myself). I am one of those epileptics who can be suddenly stricken down with no warning at all, and I have frightened myself and many strangers that way – especially the young driver who rounded a curve and found me lying helpless in the road.
I can always feel those strange brain signals and patterns, though. It feels as though my brain is occasionally being gently squeezed – a throbbing, pulsing sensation which brings waves of dizziness and disorientation with it.
When a seizure strikes it isn’t neccessarily violent to the point of a grand mal. For me it’s often very gentle, as though I’m falling into a big soft cloud or my loved ones arms. Something seems always ready to catch me, in spite of the fact that it really isn’t there. Many a time I have tumbled down the stairs for that reason – I enter a dreamlike state and lose all knowledge of where I am. Never take me cliff walking!
That soft fluffy cloud is always present inside my head; it never completely goes away. I would like to be able to tell you that it’s comforting, like a wide, warm duvet, but it doesn’t give me any comfort. It only serves to remind me that the next seizure could be moments away, or weeks away. I never have any way of knowing.
Fortunately I have found support, in the form of Epilepsy Action – and there are many other Epilepsy charities and support foundations all across the world. I have been a member for about three years and have even been quoted in a lecture at one of the AGMs, in which they asked for feedback about epilepsy (Sapphire) nurses and I praised mine to high heaven. Without my neurologist and my epilepsy nurse, you can bet that I would spend more time in hospital recovering than I would spend living my life to the best of my ability. They are literally lifesavers.
And, of course, I have to thank my Tribble – who looks after me on my bed-bound days and makes certain that I have my laptop and sewing to hand, with plenty to eat and drink. I even get hugs on the side every time I’m brought a bowl of soup or a cup of tea.