My chest is going to collapse

I have cateminal epilpesy. This means that my seizures are hormonally based and therefore occur at certain times of the month. All of my seizures normally happen in this small 2-5 day window (sometimes a couple outside of it as well). Within these days my chest feels like it’s going to constantly collapse, my breathing is that little bit faster, tears often come out and my focus is always distracted. It’s not until after I have gone I would say 2 full days of having no seizures that these feelings go away.

The question is; what do I do during this time? Do I stay alone where I have no support and am a prisoner to my own thoughts and fears? I mean, coming back from a seizure is weird no matter what because I can’t recognize anyone I see anyways… but as I recover when I recognize faces it brings me so much warmth and a feeling of safety. Do I go out in public and continue with my life where I risk straight embarrassment and failures? By failures, I mean that feeling when you go to work and are told you should go home, are participating in some activity and told its probably best that you just sit down for the rest or when you are the downer of a party and have to explain to everyone what happened and just communicate with awkward, sympathetic faces the rest of the time?

This is a debate I constantly have, every single month. It is not in black and white and is honestly a balancing act. I actively have to force myself to participate in social events/ situations. I may not do it on my super heavy day where I have already have 3 plus seizures. On that day, I give myself the respect to have some time alone and rest. When I have a seizure at work, I give myself the respect to go home. I have a disability and have to face that there is a hand full of days each month I will need a break. That’s okay. I need to have realistic goals. I need to not blame myself for my disability.

However, on the first day I think that I am going to be seizure free I make sure to go out and not limit myself. On this day I have been wrong many times and ended up having a (complex partial, not grand Mal) seizure. However, it may not be a thing that I ever wanted to aim for, but the more seizures I have in public, the less traumatic and catastrophic it is to me. It’s about facing my fears to make them less fearful. I listen to myself and try to find the appropriate balance. Although, I recognize that this is not doable for everyone as every person is different.

I believe having epilepsy places you at great risk for having social anxiety which makes sense for sure. That is why I believe that I have to make an active effort to combat it. Epilepsy almost sets you up for social anxiety. Having epilepsy is going to affect you in many different negative ways for sure. It is about making it having the least amount of impact on you as possible. Some would think that the least amount of impact would be that you never have one in public. However, I believe that the least amount of impact means that you don’t give it the power to traumatize you through rational and nonrestrictive goals. It may not be easy to achieve this. But, the rewards from battling it is worth it for sure. Set goals and ask yourself “would I be more traumatized if I had a seizure in public or if I developed a constant fear of going into public?”. In the end, you become more afraid of what you are not familiar with.

Epilepsy is a very difficult and unclear battle to fight.

You deserve a break.

You deserve freedom.

2 thoughts on “My chest is going to collapse

  1. Thank you so much for sharing your experiences with Epilepsy. It sure makes a person realize how little most of us know about it. You definitely deserve a break and freedom. Hugs


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