A quick intro to Clair:
Random Fact: “I used to ski race at kids morning with a girl who went on the be on the Great British ski team!”
Seizure freedom is a funny thing, from the moment you are told by your doctor “you have epilepsy“ it becomes the ultimate goal. Life revolves around drug choices, lifestyle changes even surgery all striving for seizure freedom, for a normal life again.
I remember waking up from so many seizures saying “now I have to start all over“ and no one helping me at that moment could understand. They see the end of that seizure as their goal, that I am “better” when I am fully conscious and physically recovered. But for me the seizure itself is less important, it’s the huge set back in seizure freedom that it represents that hurts more.
No one really understands this concept until you are counting down the days to that magical seizure-free year when you get your driving licence back and suddenly don’t seem such a risk to everyone around you.
But what does seizure freedom really feel like? Is it the ultimate goal? Does life just return to normal? I hate to shatter the dream but unfortunately, it’s not quite that easy.
Please don’t get me wrong seizure freedom is amazing, being able to drive again, being able to apply for jobs without having a huge occupational health interrogation, not having to worry about having a seizure every day. These things are amazing, and I am so thankful that currently I am four years seizure free.
But I have been two and half year’s seizure free before and then a tonic-clonic seizure has stolen all that happiness. And the longer you go seizure free the more choices you have to make that will be shattered if you do have a seizure.
Do I take a job that if I have a seizure I will lose or at least will be limited in? Do we move house to a better area for schools but worse for public transport? Do I sign my kids up for clubs that I need a car to get to? The impact of a seizure isn’t just on me anymore but my kids as well.
Everyone says you should live your life to the full but it’s not always that easy when there is so much to lose if you chose to change your life so that you are reliant on that seizure freedom.
And there are so many threats to seizure freedom, you could forget a dose of your medication and have a seizure, easily done when seizures aren’t a daily threat and you are trying to “get on with life”.
You could have a tummy bug and can’t keep your medication down, or take another medication for another problem that interacts with your meds and causes a seizure. Then there is travelling and jet lag, running marathons, high temperatures, having a drink or two or three… how much can you stress your body before it causes a seizure… whatever the cause of the seizure everything is reset, and you lose everything you have gained from the previous seizure freedom.
On top of all this pressure to stay “seizure free“ and live life to the full, you also start to feel like a fraud sharing your worries with other people whose epilepsy is far worse, people who are battling seizures on a daily basis. You start to feel out of place in epilepsy forums and groups, like your worries are so less valid than people with active epilepsy so you keep these worries to yourself (probably another reason you could have a seizure). So, who do you share these worries with?
Seizure freedom while amazing in so many ways can be at times very lonely and isn’t as easy as it might seem to the outside world. But there are lots of us in this boat so keep talking, keep sharing your epilepsy experience and your worries because it raises epilepsy awareness and I find helps to keep me sane while living in that no man’s land of “seizure freedom“.