When thinking of Epilepsy or a person who experiences seizures of any type, most people automatically think of the actual seizure, whether it be an absence seizure, where a person seems to ‘zone out’, or a grand mal seizure, where a person loses consciousness and they have muscle spasms throughout their body. What a lot of people often don’t realise is the impact these seizures can have on someones day to day life. A seizure is not just a three minute experience. Before and after a seizure a person can be in pre-ictal or post-ictal for quite some time. Sometimes it can take days to sleep off the effects of a seizure.
I have experienced uncontrolled seizures since I was six weeks old. The diagnosis for Sleep Deprivation Photosensitive Epilepsy didn’t come until I was fourteen, by which most of the damage to my body had already been done. Medication was an issue for me and for many years I was constantly trialling one medication or another, suffering severe side effects that often left me bedridden and in agony. Eventually I made the decision to stop medication and attempt to ‘control’ or at least monitor my seizures as best I could without the help of pharmaceutical drugs. Some may see this as a bad decision and many people have claimed that I am not taking my ‘condition’ serious enough, but until said people have walked my path and experienced what I have, their opinions really hold no value to me. Sometimes you need to take a step back and evaluate a situation where whatever choice you make, it is going to be bad. When I had to choose between the worse of two evils, I decided to do it without toxic chemicals that would eventually cause damage to vital organs, as well as not completely ceasing my seizures and the extreme side effects that made day to day living pretty much unbearable.
This means I now have to live with my seizures, whether they be epileptic or not. Some scans have come back showing Epileptic activity and other times they show nothing, however the seizures continue. When I tell people I have seizures, they usually think I simply have moments of weakness where I shake my body around a bit. I wish that were true. I would like to share a few of my own experiences in the hopes of informing people about the reality of living with seizures and not just epileptic ones either, but seizures in general.
Over the years the amount of seizures I’ve had have impacted on my general health, not only physically, but mentally, psychologically and emotionally. I fear doing basic tasks such as grocery shopping or checking the mail, because too often now, I have collapsed before large crowds of people, during which I’ve even had my handbag, jewellery (including my medic alert), Prescription glasses and even my shoes stolen from me while I have been unconscious. When I tell people about this they seem to think this would be a far and few between incident. Sadly however, it isn’t. Over the years this has happened to me countless times and upon speaking with other seizure sufferers I have learnt that I am not alone in this experience. This has caused me to develop social anxiety to the point where even among friends I find myself chattering consistently about irrelevant topics merely out of nervousness. My brain can no longer seem to identify when I am safe around people and when I’m not, so I constantly fear being around anyone. As simple as that may sound, it’s a nightmare when you are also afraid of being alone for fear of having a seizure whilst in the shower, checking the letterbox or even changing a light globe. The simplest every day task can become a horror story very quickly. Even sitting down with a cup of hot chocolate is dangerous, because if I have a seizure and that liquid pours over me, how long will it be before I am alert enough to put a burn aid over my searing skin? If I have a seizure checking the mail, how many people could walk past and be able to help themselves to my home? And yes, that has happened before. My questionable faith in humanity may be beginning to make sense to you now.
It’s not just the fear of having a seizure at any time, in any place, around any person though. There are other factors of seizures that many people wouldn’t even think of, many of which I didn’t even think of until it happened.
I can’t watch television, or sit in a car at certain times during the day, due to the sunlight flickering through the trees. I can’t go swimming unless I have someone within arms reach at all times. Baths are out of the question, I can only shower. I can’t handle severe temperatures, whether they be hot or cold, even food has to be only moderately heated or cooled in order to reduce any shock to the body that could cause a seizure. I can’t watch fireworks or lightning. Even cooking dinner can be a dangerous experience.
Over the years my seizures have caused irreversible damage to my body. Not only are my muscles noticeably weaker, but my joints and ligaments are damaged beyond repair. Often when I sit down people turn their heads to the side trying to place the sound they hear. Yes, that’s my joints creaking and cracking as they move. Even typing this is painful and I have to wear a brace to protect my wrists and constantly flex my fingers so they don’t seize up.
Yesterday I was at the dentist, complaining about a bad toothache that has been keeping me up at night and we discovered that even my teeth aren't safe from my seizures. During my seizures and nocturnal seizures, I have been grinding and snapping my teeth together, which has caused hairline fractures across the enamel coating of my teeth. Also the ligaments along my jaw bone and at the roots of my teeth are swollen and inflamed, creating the sensation of a bad toothache. I feel as though I have no control over any single part of my own body. No matter how much I brush and care for my teeth, they will still be damaged, just the same as the rest of my body.
Why am I writing this though? I am not looking for sympathy, I have a wonderful life despite all this and I am living my life the best way I know how. What I am hoping for is some awareness. Too often now I have been looked down on because I don’t work a 9 to 5 job and I receive a Government Pension. To many I am seen as a drain on society. Most days I seem perfectly normal, I talk too much and laugh too loud and there is no reason I can’t be sitting behind a desk or serving people at a checkout. I have worked and I have held managerial positions and had some quite important jobs in the past, yet even the most mundane and simple job cannot be done during or whilst recovering from a seizure, so every job I’ve had has been temporary. I’ve even had seizures where I have lost so much memory, I’ve forgotten I even had a job. For some unknown reason every employer wants one thing from their hired staff - reliability. When it becomes obvious that I am never going to be 100% reliable, no employer wants me on their team. Even a simple phone call to advise I am unable to attend is beyond my capabilities during a seizure.
So next time someone tells you they have Epilepsy or seizures of any kind, please try to look beyond the seizures to see and understand just how invading seizures can be to a person - not only to their body, but to their emotional and psychological wellbeing. Understand that we don’t ask for this and we have no control over it. What we do want is to be able to be a part of society and live our lives as best as humanly possible. Some of us can do this quite well and hold a job and even a drivers licence, but some of us are just trying to get from one day to the next and do the best we can.