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Newly Diagnosed and Feeling Alone/Discouraged
Mon, 11/16/2015 - 14:08Hi, I am a 19 year old girl. I just started college and was diagnosed with JME in February. Since then I have had 3 tonic-clonic seizures. My last one was on October 24th, and since I live in Utah I have to be seizure free for three months until I can drive again. I am living at home during my first year of college. Since I was diagnosed I have struggled to talk to my family about it. It is really hard having to rely on my family for everything because I have been extremely independent my whole life. My mom has now put a baby monitor in my room so that she can listen to me if I have a seizure (she works from home), because of this I feel like I have no privacy anymore. Along with that my family will not let me study in my room at my desk anymore. I have to study upstairs. Usually I like to watch shows on netflix when I am getting ready in the morning or when I go to bed as background noise - it helps me sleep sometimes. I can't do this anymore because it is disruptive to my mom and sister who have the baby monitor receivers in their rooms. I have to rely on them to drive me to work and any other place I need to go. Often times though they are unavailable to take me places so that I cannot get the things that I need. I'm really struggling with adjusting to all of this and I'm feeling guilty for making my family drive me places. I don't know what to do. I don't feel like myself anymore.
I hated being watched all the
Submitted by just_joe on Fri, 2015-11-20 - 16:55
I hated being watched all the time. There were no moniters back when I was diagnosed but parents did keep an eye on me and in order to know more they had my brother watching me at times. You are not alone.If you want more privacy then ask your mother if she would let you put a moniter in her room so you can listen in just in case she started having a problem. It might make her think a little about you having some privacy. Mine knew once my chores were over I was gone and I got baack in time for supper. As for homework I did it on the kitchen table. Well Mom started it because of my seizures. I left it there since I was watching her cook and at times she needed a hand. I also learned more about how to cook and how to put meals together with few items.The family still says I have good recipes and they enjoy my cooking. Some will call now and then wanting a recipe. All it takes is hearing what they have to cook with and I can come up with something for them. Larry had beer and pinto beans Well He now likes beer beans with cornbread. He will grill something and fix those beans, Give it time and soon the moniter will be out and you will be driving again. I hope this helps Joe