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Missing Out


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I'm missing my old self so much right now. My sister and all of my friends just got back from a One Direction concert and I soooooo wish I could of gone. The lights and noise and everything would have just been too much. I miss school, I miss having friends, I miss being a normal fifteen year old. I have been doing a little better with not feeling bad for myself but things like this just make it so hard. :(

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puppylove, since you're so young, i hope that you outgrow this condition. it seems like you have a pretty good chance? i got stuck with this in my late 30s. i can totally relate to what you're saying about missing out on stuff. for me, there is also a mourning that goes with missing the person i used to be. i was slender, highly employable, a musician with "fans" (which is a total trip!). i really miss being on stage! even if i could handle it, which i can't, i would never put my fat gross self out for the world to see, take pics and post on the internet. LOL

aside from that, i have just been able to travel successfully for short trips, which i couldn't do before. so, now i can go visit relatives nearby, and that makes me very happy. :)

i really hope that your situation falls into the category of having it young and therefore outgrowing it. crossing my fingers for you!

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I'm sorry that you feel this way. I'm sure it's very hard to be young and changed by pots. I, too, struggle with this-- so don't feel alone.

Maybe it's time to try something new, that you are able to do that is fun? Maybe water aerobics? Synchronized swimming? Do you get on pinterest, it has tons of cool crafts, or maybe get into photography?

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It has taken my daughter a year to arrive at a tiny bit of acceptance that she has some limitations that other teenagers don't have. She is so determined, and has told me that 'there is no part of me that wants to sit on the couch all day and drink 6 bottles of water...', and yet many days that is all she can do. I understand how you are feeling. She finally arrived at the conclusion that she cannot continue with regular school, which she was pushing so hard to do because she wants to be around people, and her old friends - and she really has learned who her friends are through all of this. It was a hard decision for her, but I see her coming to terms a bit more with herself. One thing she does have is a minimal part time job, in an air conditioned place, that gives her only a couple of 3 or 4 hour shifts a week. That gives her something to feel good about, gets her out of the house, and gives her some spending money too. The only reason she is able to do it is because of the air conditioning and the short shifts, and she often sleeps most of the day before her shift and then sleeps right when she gets home, but she says it is worth it.

Not much help, just understanding how you are feeling.

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Puppylove:

I know it is so hard at 15 to not be able to go out with friends. The good thing is that you are young and will hopefully outgrow this miserable thing called POTS. In the meantime, perhaps your sister and friends could come to your house once in awhile, instead of going out, and you could all do something fun (watch a movie, talk, play games).

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  • 2 weeks later...

It's ok puppylove!! Everyone misses out with dysautonomia. (Ive been out of school for 6 months:() Try doing some of your hobbies, I always like working on my book:) it takes my mind off of everything. I am soo sorry you couldnt go with your friends:(. But, you can go on YouTube and you can watch one direction videos, I bet theres millions!

Hope you feel better!!

Kayla, 10

P.S Try and think about your favorite things, from you name it sounds like you like dogs, (go dog lovers!) so think about cute little puppies. That'll help.:)

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Hang in there. I got sick after my 19th birthday. Hopefully you're symptoms get a lot better after some time.

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