I hate this feeling. Today wasn't the first time that I got sick after eating. It's been happening more and more frequently lately, but today it seemed to hit me the hardest. Right now I'm hungry, but the fear of eating and getting sick again is over riding the hunger. I guess the good thing is I'll lose weight from skipping a meal...haha On a serious note this really stinks. I'm home alone with the girls, and just don't want to take any chances on getting sick with no other adult here. What will I do if this whole getting sick when I eat thing sticks around. How will I know if it will make me sick again like it has recently. I don't think it's an allergy thing since it's happened with such a wide variety of foods. I hate Dysautonomia and all it's stupid unknowns. I hate that one minute I'm feeling perfectly fine (well fine if you have dysautonomia, I rarely feel perfectly normal fine) and then the next second I'm writhing in pain that is so bad it brings out the tears. And you know me, I hate crying. I remember getting migraines and headaches when I was younger and my mom would say, "Try not to cry, crying will make your head hurt worse." So I learned and taught myself to breathe through my pain. I deal with a lot of pain by breathing and trying not to cry. Mom was right, all that crying did just make my head hurt worse. So now, when there are tears falling, with me that means there is some serious pain. Especially when I'm doing all that I can to stop those tears yet they still fall. I'm tired of pain like this! I'm fed up with daily headaches that send most people to bed, but I keep pushing through them. I'm tired of constantly feeling as if the ground below me is moving and I never know which way it will tilt. I'm tired of being in the middle of a great book, only to go completely blurry in my vision to the point that I can no longer make out the words. I'm sick of spending beautiful days inside on the couch because I'm a fall risk and I have no one to go outside with me other than my kids, and I definitely do not want to get sick out in the yard alone with my kids! Today, I'm more than usual really just fed up with this stupid disease.
I have so many things that I want to do! Places I would love to see. Events I would love to attend. Just hobbies that I wish I could pursue with extreme gusto instead of hit and miss learning and experience because I'm stuck indoors more than anything else. I just wanna be the person that I know that exists inside this broken body.
4 comments:
aww I'm so sorry hun :( *hugs*. People don't understand that when we have our symptoms.. they're ten times worse than what reg. healthy people would be dealing with, and we have to deal with them on top of a ton of other horrible symptoms. It's very frustrating, and you have every right to be mad and upset about having dysautonomia. Even a good day is never actually a good day. I wish I could be there to help you out!
I feel your pain. I too have dysautonomia and trouble with eating. Had a pacemaker for my heart put in, but that kicks in every time I eat. Which gives me terrible heartburn as well.
Doctor to doctor to another doctor, no one seems to really understand what we go through.
I think that you just wrote about my life! I have three boys at home and I have the same fear being sick with them here. Thanks you letting me know that I am not alone.
I got dysautonomia 13 years ago, when I was sixteen. At that time, the disease was totally unknowned in Chile so I was diagnosed like a "extremely stress sensitive" person, and a hypochondriac. So when you people also say how hard it is not only to cope with the disease but also with healthy-but-not-empathetic people I smile to myself. it sounds crazy, but I feel happy when I read all these comments. I finally belong somewhere. You guys understand. It has not been easy. The first year was hell. Besides fainting the pain was intolerable. I got fibromyalgia. But somehow I finished school with excellent grades, though I had to give up my dream of becoming a doctor because shifts were out of question. I'm a strategy consultant now, and although I've had to take several times off because of dysautonomia crisis, I've manage to survive. I understand and cry with you when you say how much you hate being trapped on this broken body. Right now I'm on medical absence from work because I'm living the side effects of antidepressants withdrawal syndrome, which has been like coming back to first year. I got up this morning with all my intention of making this day a productive one, but my body told otherwise. And for the first time I got this terrible sensation after eating. This is why I came to this blog. But let me tell you something. It's not all lost. One the one hand, it could be worst. We could all be dead from this disease without our current treatment, and we have to be thankful for not having the worst type of dysautonomia. Those poor folks don't even have strength to write. On the other hand, this condition allow us to value life itself, and we do have some windows of time to enjoy it. There is a lot of people in perfect conditions but suffering for the stupidest things. Sure, is not perfect. There is a lot of misunderstanding. But we live our lives taking advantage of every flow of energy because we know it could end any minute. Let's support each other when we feel blue and encourage us to live to the fullest when we feel ok. Thank you so much for your sharing, it helped me to cheer myself up.
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