I have been totally seizure free for 6 months now which is the longest I have ever been seizure free for since I was diagnosed 10 years ago. Now don't get me wrong I am really happy but part of me is terrified too...
The seed for this blog was planted by a friend of mine who has really inspired me to talk out about something which I find difficult to put into words and which I sometimes feel guilty for but here goes – I just hope this makes sense and that I don’t upset anyone.
For many years I have felt in a difficult place, my seizures don’t happen, daily, weekly or even monthly but my seizures have never fully gone away, in fact at one stage I went over two years without a major seizure and then had one for no apparent reason. I often find myself feeling bad that sometimes I get down about my epilepsy because so many people have it so much worse.
But talking to my friend made me realise something… now don’t get me wrong I would never want to live with more regular seizures but in having seizures so irregularly sometimes I feel I can’t be completely honest about how I am feeling around people whose seizures are so much worse.
I often feel bad posting on epilepsy forums about my problems because they often involve issues people whose epilepsy is so severe can only dream of facing. When your seizures are under control you have to get on with your life – live it to the full or you are wasting that time but the epilepsy is never gone, it is always there in the background, always posing a risk.
This weekend I mentioned this to my husband and he totally understood what I was saying. He said it’s like if you have seizures all the time someone is constantly hitting you with a bat which hurts and stops you being able to get on with things. But when your epilepsy is controlled it’s like you are being followed around by someone holding a bat who might hit you at any moment for no good reason – you can’t forget it’s there and you always have that worry with you.
He also told me about an experiment carried out in the 1960s where monkeys received electric foot shocks that were signalled by a preceding tone. Monkeys were in pairs, with one in each pair able to press a lever to avoid the shocks. The other monkey in the pair could not press the lever and so received all the foot shocks that were delivered.
The monkeys who had control over the lever quickly began to show signs of stress such as gastric ulcers and some even died. The monkeys who received shocks but could not try to avoid them, remained healthy although I’m thinking probably weren't particularly happy!
They concluded that the shocks themselves were not severely stressful as the monkeys who had no control over the shocks showed little sign of stress; the critical factor was the stress associated with trying to avoid the shocks. Having control was the stressful element.
In a way if we get our epilepsy under control with drugs and by making sure we look after ourselves it’s a bit like being the monkey pressing the lever to stop the shocks – we can avoid the horrible seizures but we have to make sure we take our medication every day, get enough sleep, eat healthily, don’t drink alcohol.
The more we do to try and stop the seizures the more pressure we put on ourselves not to mess up. Then because we don’t have seizures any more we take on more responsibility, we drive, have children, take a job which relies on us being seizure free… and then it’s even more important we don’t slip up – miss our medication, have a bad night’s sleep, get stressed over things, because the consequences of having even just a single seizure are so much greater now…
It’s something I have always felt bad talking about because I feel I should just feel lucky to have such control over my seizures that I can do so much with my life, but suddenly I realised I'm not alone in feeling like this and by not speaking out about it I am bottling up stress and anxiety which isn't healthy.
Maybe just maybe there are other people out there who feel the same and by writing this blog I might reach out to you and make you know it’s OK to feel anxious and down sometimes even when your seizures are well controlled – because we still have to live with the unpredictability of epilepsy just in a different way.