Tricks of the disease

Non epileptic seizures are not curable, nor do doctors fully understand their origin. Therefore, it is up to me to figure out what works and what doesn't. Here are a few tricks I have learned that work for me...

1. Distraction can be a good word. Managing stress is often a balancing act and sometimes I need to choose to be distracted from tasks that stress me out at that moment. 10 minutes or an hour can make a world of difference when I switch to a task or activity that does not stress me out. Regularly practicing this helps me avoid multiple seizures.
2. Physical activity helps. I know people say this all the time, but physical stimming, dancing, walking, bike riding, any kind of physical movement really does make a difference. Sometimes I can't do much activity because my muscles are too weak, but whatever level I can manage helps me process my thoughts by physically releasing my emotions in this way. 
3. You need a support system. 
   Honestly, embarrassment and panic when my legs get weak from Porphyria is probably one of my most common triggers for my seizures. I hate being incapacitated in public or when I have a task to do or a meeting to attend and it often makes me panic to just imagine it might happen. Muscle weakness can also be debilitating but can easily be managed by rest and sitting down. A seizure, however, can keep me down for hours or days or weeks and I never know how bad the consequences will be until I'm facing them. The only way around this panic and embarrassment is a support system. People at work, at home, on every vacation you go on who know how to help and are not afraid of or too irritated by your varying limitations. My family and friends and workplaces are the only reason I have a choice not to panic. Because of them I don't have to be afraid of losing my job, or of not being able to get to a bathroom. I know that I have support when I need it. All I have to do is ask and someone is there. If you don't have a support system, remember that good friends step up when you start asking.

If you know someone who struggles with Porphyria or NES or any number of other debilitating and inconsistent diseases then remember that you are the one who can help, so stay calm and be there. We can't help it. This is who we are. Make sure your friend or family member knows that you are not afraid or irritated but simply there for them. 

Hope these posts continue to help, 

Kelly Ann