hard time today- Saturday POTS and EDS combo.

i'm going to write out a message i had to send to my husband on saturday. he was out of town filming a wedding and i didn't know who to call to help me. 

my oldest daughter is something else.. she wants to help me so bad. i have such a hard time asking her to do that though, she's still a kid at 12.5, and i (maybe selfishly) don't want her to have to help her ailing mother. that doesn't paint a good picture in my mind, i don't want her to remember having to do that. 

ironically, when i asked her the next day what her favorite parts of girls day was, one of the things she said was "helping you when you were hurting". this girl and her heart.. am i taking that chance away from her to help me? is this something that she could possibly really WANT to do? 

my body feels like it's shaking all over inside, my left knee feels like it's going to collapse, like it's barely holding me up. this morning, when i was at my moms house, me and the girls were having coffee and i snapped at Jazmine for hanging on me and touching me. so my anxiety is part of it, my POTS syndrome is part of it, all of this is created by the fact that my connective tissues don't work. because i was born with a connective tissue disorder, i basically feel like my left hip is going to pop out of socket, it doesn't feel like it's going to stay underneath me. i'm glad I have a cane. 

"i'm having a hard time with my POTS syndrome today.. just sitting on the couch, i felt like my body was tumbling upside down, just sitting still. and i also felt like, like when i stand up and get light-headed, i felt like that just sitting down. just now we had a little bit of like a snack lunch, and Jazmine wanted to do something herself, and I wouldn't let her. i took over because i'm having a harder time letting people do things for themselves because i want to feel like i'm in charge, like i can do stuff. but i can't. 

and i'm having a really hard time with that. so.. Alivia went up front to play her clarinet, Zoe is playing her.. recorder? um, Jazmine and I are on the bed, she's taking care of me. there are parts of my body that are hurting *sniff, I just can't think clearly. Jazmine's here with me, she might say something *sniff.

we're gonna call your mom and see if she can come over, just to be with us today, because I don't want to put this stuff on Jazmine to help me with, no matter how much she wants to. i'm just having a hard time and i can't call you, you're working. 

but i really agree with the lady at GIFT gathering *sniff, that you need to have a support system, too. especially at times like this when you're not going to be home, we need to have other people to call to help.

Jazmine: I love you daddy."