I have had epilepsy for about 6 years now and it is been a crazy yet amazing journey. Since having epilepsy, I have learned so much about myself and met so many wonderful people along the way.
Epilepsy is very hard to deal with every day, there are always struggles but I feel that these everyday battles make me stronger. There are many things that need to be done if you have epilepsy. Having epilepsy isn’t just having seizures and taking medicine and that’s it. There are so many things that go along with it.
EEG is a term that I know very well by now. EEGs are tests conducted with electrodes attached to the head. Monitoring can go on for several days, depending on if seizures get recorded or not.
Medications are another big part of having epilepsy. There are so many different medications that someone with epilepsy may have to take. As time goes on, you may even have as much knowledge as a pharmacist—okay not really. But, you sure do know a lot about them.
The many doctors appointents with the same question...”what to do next?“ The constant question of talking about what the next plan of action will be. You see, my epilepsy is medicine resistant, so I have tried many medications and none of them are able to stop my seizures. So, at doctors appointments theres a plan made of what to do next. This can be a very good but also a very scary conversation. There aren’t many options for people with epilepsy. So, the topic of surgery comes quick sometimes.
Epilepsy can be a waiting game. Waiting to see if a medication will work, waiting to try and remember something. Also, waiting to see if you will have another seizure. Not waiting for this with excitement and anticipation, but just hoping you won’t have a seizure. Waiting to see if you will so where ever you are you can kind of “plan” for it. Even though preparation for this cannot be done, you prepare yourself mentally as much as you can.
With epilesy there is always anxiety; well at least for me. The anxiety isn’t as intense as time goes on because you get used to the illness but you never know when seizures will occur so the anxiety is always there. Anxiety is always present.
Sometimes having epilepsy makes you feel like you have no control of things. Which makes sense, because when seizures are not controlled; you never know what will happen. The thing that I have learned is that, accepting the feeling of no control of having a seizure is important. You never know what will happen, which is scary but pondering over this feeling makes you have even less control. Control of your mind and the positive thoughts that you want to have. Pondering allows epilepsy to still be in control.
Having faith and and taking control of your life can change things for the better immensely. When you learn to not overthink as much, over time you are taking back control. Doing the things that YOU want to do and showing that you are a warrior through it all shows that you are taking control!!
For those who know someone with epilepsy, I hope this shows you what our world looks like a little bit. For those with epilepsy, I understand your world. Keep fighting everyday and being the warrior that you are!!