Manda, 35, UK
I'm not going to lie, me and my epilepsy definitely have a love hate relationship! I was first diagnosed when I was 10, a result I was later told of having meningitis when I was 4. I'm 35 now. And I get the feeling this may be a longer post than I expected in the first place to write!
I remember being diagnosed, feeling as claustrophobic in a room as was possible, my feet hardly able to touch the floor from the chair I was sat upon, and then being told a word that I could hardly say, let alone comprehend what was going on with me! No one properly explained to me what was going on. The doctor was telling my parents what was going on, but me, the one who was going through it... I felt in the dark when it came to knowing what I was going to be living with. At first I thought it would go away. I was diagnosed that day with myoclonic jerks and also thought that this wonder drug would cure them. They'd put me on this foul tasting liquid (Epilim) and my 10 year old self was convinced that this foul tasting liquid was my miracle drug. It was so foul I'd sneakily pour it down the sink! That probably didn't help matters but I was 10 and extremely uneducated about my condition. All I knew was that I'd be having blood tests every 2 weeks and that was the one thing that stuck in my head from the appointment.
I would learn in my life that there are far too many people in this world that are as uneducated as I was at 10 years old. They'd think I had the answers to explain what was going on with me. I'd ramble something which I thought would be true just to get them off my backs but the stress of that got too much. I developed an eating disorder a few years later, which thankfully took the edge off everyone asking me about my epilepsy and instead trying to get me to eat. Now I don't know how well the 2 are linked but to visit doctors and not need to talk in depth about my epilepsy could come as a huge relief!
I managed to get a place at university with my epilepsy, which at the time was just petit mal. I learnt far too much in an awful lot of ways whilst I was there. I learnt to listen to my body when it came to triggers. I learnt how to calm down and find ways to deal with things whilst still being able to enjoy my time there. The Student Union were amazing for whenever they knew I was going to visit their club they wouldn't use their strobes that night. There was a lot of guilt there that maybe others wouldn't enjoy the night without them but I had some great friends who helped with that by saying that it wasn't spoiling their night. I'd already learnt that alcohol was not the thing that was going to be good for me so I'd dance my night away on stage with my friends. Something I could only ever dream of when it came to going out when at home.
Not all that I learnt about my epilepsy at university was good. The seizures were becoming more frequent. Mostly down to the stress, I think. My parents had to come up and take me home for what was supposed to be a few days break. On the way home in the back of the car I had the first of two Grand-Mal seizures. The second came about 5seconds after the first. Altogether lasting just over an hour. I don't know how I arrived at the nearest hospital but I was starting to come around from the second seizure when someone tried to get me out the car. My ankle was twisted around the seat in front quite badly. I hardly felt the pain of them releasing it. All that I felt was everything going on in my head. People were trying to talk to me but yet and I couldn't even understand myself, let alone what people were saying! It took about 2 days for that feeling to wear off.
Despite the situation I found I had been taken to the right hospital. A well respected neurologist had a clinic at that particular hospital and was more than willing to take my case. From the get go we have got on. For example he came round and said he wanted me to have a lumbar puncture done as soon as possible. I looked up at him and just said "Not until Friends has finished!" That had us both laughing! I couldn't see myself trusting any other doctor with my condition. He's well aware how temperamental it can be. He took on my case and for the next 2 weeks in that hospital all I felt like was a guinea pig whilst we tried all different kinds of medication to see what was working. My seizure diary was always about 5 pages, if not more on some days! Eventually we discovered that Lamotrigine and Oxcarbamazepine seem to like me, along with Keppra and Zonisamide but I've been since been taken off it. Phenytoin really doesn't like me!
I wish I could say that that was the worst that has happened but it's not! I've been hospitalized twice in my neurologist's main hospital a few times. Staying there for a couple of weeks each time. In my local hospital a few times. This is not due to grand mals, but cluster seizures, which can last as long as one grand mal can. These ones are the ones that terrify me the most for there's literally nothing I can do until my right leg starts shaking uncontrollably, and I'm conscious throughout. Weird I know but that always signals when it's close to ending. They can feel like a broken record at times. One that sticks in my mind a lot is that for half hour, during a cluster seizure. I had one, but the only thing I had in my head was that Ian Fleming wrote the James Bond series. When I lived with my parents and felt one coming on I'd literally call down the stairs because I get so terrified of being alone during them. And they drain me so much more than any other kind of seizure I have ever had. My mother was once asked, when I was 25, what my body did when I went through a cluster seizure and as she explained it I found myself in tears for some of the things that she was saying I had no idea I did. It was that appointment when I realized exactly what my condition was really like. And it was also around that time that I finally found I could spell "epilepsy" properly.
Post seizure I can feel terribly drained. There's an ache in my head that is as far from a headache as possible. Headaches pound. This doesn't. This just stays there and feels like it's never going to go away.
The positives that I have actually gained from having epilepsy is that I understand other medical conditions so much better now, as well as myself and what my triggers are. My boyfriend has Crohns Disease and we both learn about each other’s condition from talking to each other. The majority of the time we make far more sense to each other than reading up something medical that the other has happened to have found! I've been so lucky to have met people from all different walks of life who aren't ashamed to accept their epilepsy. That took me an -awful- long time.
Having it during school years really knocked my confidence to the point where I would do everything I could to not feel judged by others by admitting I had epilepsy. I was seriously in denial about having epilepsy back then despite still having seizures. These days I've managed to surround myself with people who not only won't judge me about it but are willing to just accept the epilepsy as part of me. I didn't think that was possible!
There's still a lot, I feel like, I don't know about my condition but I'm ok with finding out about it all now. I'm absolutely fine with wanting to ask questions with what's going on inside my head from someone in the know's perspective. I think it's the fear of not knowing what is exactly wrong and what is even going on inside the brain that needs changing. I don't mind telling people how it feels to have a seizure, that the pre and post parts of having a seizure are just as important as the seizure itself. If not more so.
The more I've learnt to live with my epilepsy the more I've come to accept that it's a part of me and not a condition that has ruined my life. It makes me sad when I see people talk about how it has ruined their life. Having had it for 25 years I feel like I can't comment on that as much as I would like (saying that I did want to be in the Royal Air Force when I was 10 but that was a hope and dream). But I'm totally ok with not being able to drive (I go watch cars race instead) and I'm totally fine with the fact that there's flashing light warnings on the TV (time to make a cuppa!).
What I'm not fine with is the fact that people think it's a life sentence. I can definitely assure you it's anything but that when you learn to listen to your body and understand what is going on. This is where people need to realize that epilepsy doesn't deserve the stigma that it has and it is actually alright to be epileptic and enjoy life.
- May 31st, 2015
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Twitter: @Jewel_Down
