Rarely There

The worst part of having a rare disease or any disease is the fact that you have limits. We all have limits but sometimes the the limits I have are normal day to day things for others. Like going to church. Going to the store. Seeing people. Talking to people. Cleaning. Spending time with others. And much much more.

And you get left out. Alone. Because you can’t be there. You can’t do things. You are rarely there, you are rarely here.

You want to be there you want to go to church the store just be around people. Be normal. Persay. But you can’t be. Because your body can’t do it. Can’t do much. Can’t be normal persay.

I’m not normal. But what is normal you may ask? Normal some say is boring. And it seems boring to me. But it also seems almost safe.

As I walked out of church I was so close to the car almost there. I had a headache for the past few hours and I knew I felt off. I had used my magnet for my VNS a few times. I don’t like having seizures around people. I feel guilty. I scare people.

Normally people don’t know what to say. Don’t know what to do. And they have a right to be scared of the seizure. I get it.

when you can’t hang out because you are vomiting. Or seizing or both. You feel as if people can’t relay on you because you never know how you will feel that day. You don’t have enough energy to spend two days in a roll going somewhere like the store, or church.

I use to be someone who never canceled plans because I felt bad when others did it to me. But I had to learn how to say no. How to cancel.

I use to be always there. Then I was rarely there. Now I’m somewhere in the middle… I hope I can stay that way…. because now I’m here..

Shayweasel is here

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