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I Have Postural Orthostatic Tachycardia Syndrome

When Will It Become Real?

By: kbarrios93
Written on November 13th, 2012
First they didn't believe me, once they did they wanted to help. Now, they "think" they're helping, but when I tell them what I need to do or how I feel it seems like its not important. They all tell me how important it is that I take care of myself but while I'm trying they keep distracting me like it's no big deal, and then get upset with me because I didn't take care of myself properly. I try to tell them that I can't get out of bed most of the time and then they  ask, "so when are you getting a job?". I try my hardest to act like there's nothing wrong with me but sometimes I just can't and I have to rest. I don't know how to get them to see that, hopefully it's just a "it'll take time" thing.
By: kbarrios93
Age: 18-21 , Female
196 people have read this story

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4 responses
  • jayne16
    jayne16

    hi there, my name is Jayne and im 16 years old. I was diagnosed with POTS about 3 months ago. I had always told my family that somethings wasnt right and i needed to see a doctor because of all the symptoms i was having, but they just told me i was being "lazy" because i couldnt get out of bed sometimes and was literally dragging myself around the house and not able to go out with friends etc. eventually i began oassing out almost every day. I researched my symptoms and right away i just knew i had POTS. Even after trying to show everyone, they didnt want to hear it. Eventually i got a app. with a POTS specialist and was diagnosed with one of the most severe cases he had seen. I thought now my family would want to support me, but every time i have a bad day they make me feel guilty and like im not trying hard enough. My dad just doesnt want to believe that im this sick so he looks the other way.
    sadly, this means that i do almost everything on my own. I set up charts and notes around the house to remind me of things since i have severe memory loss, I set alarms for my meds and to remind myself to eat, i get up and work out to keep my circulation, and dont even tell them when i get a migraine or have thrown up in the middle of the night.
    Do not let anyone rush you into a job or anything. I had to leave my job waitressing because i cant be on my feet for too long. My dad was dissapointed but i know my limits and what i need. YOU know what your body feels like. NOT THEM. however, you still need to try to stay up and moving. I know its hard to pull yourself up but you need to keep the blood flowing or youll feel worse. you CAN still rest though! sit with your feet up for 20 minutes every hour or so. it will help you body relax to the adjustments. :)
    I dont know all of your symptoms or even how bad they are, but do not give up hope. Support is very important with any illness and if you dont get it there, you HAVE it HERE. Thats the reason i joined :) and i wanted to meet people like you who know the struggle like i do. Keep your head up and keep researching, youd be surprised what neat tricks you learn that really help you feel better.

    Supportively, Jayne

    Dec 28, 2012
    2 likes
    • kbarrios93
      kbarrios93

      I wont even lie to you, this made me a little teary eyed. I know you wrote this so long ago, but thank you for taking the time. I guess I got a little overwhelmed because im seeing so many people that are younger than me [not that its a bad thing of course] and they seem to try so much harder than I do. it is really hard, I still struggle a lot but im trying to find motivation to do better for myself, and somehow people like you seem to give me that inspiration. so thank you so much for your support, I really appreciate it, its good just to know that others are struggling like I am and that they have hope

      Apr 14
      1 like
    • jayne16
      jayne16

      hi again :). I'm happy to hear from you again. I've actually not been on here as often as I had hoped because of some health issues that came up and needed dealing with. I'm so glad that my comment meant something to you. I really do try to be supportive of anyone going through this because I know hoe hard it is, especially when you don't have the support you need around you. Don't worry about not trying hard enough, hon. You're case may have different limits and such than other peoples which is why some patients can go around for a walk in the park while I cant because my body temp rises. Or a girl i know with pots who eats normally while I almost had a feeding tube. You work as hard as you think you need to. You're in charge of it. As long as you don't give up than you have all the time you need to work it out and find a balance. And of course, I'm right at my keyboard if you need a boost. :)

      Apr 14
      1 like
    • kbarrios93
      kbarrios93

      Thanks doll it helps :] I hope your doing well or at least getting better, and even if not just yet then I hope your still trying as hard as you can! I'm working on making my habits better, sometimes it's other people but mostly it's me, so I've got to try harder on what I know I can do, thanks again though we should talk more :]

      Apr 15
      1 like