needafix Posted April 25, 2015 Report Share Posted April 25, 2015 Let family and friends read this site so they might better understand what you are going through. People see you and you look perfect. People look at you crazy when you have to race to a seat to sit down before you fall down even if it is on the curb while you are walking outside. People wonder why you have to carry around your own chair or why you no longer go outside on sunny or hot days. You begin to feel like a vampire. Everyone wishes for the warm weather to come and we wish the cool weather never ends. Why you always feel cold, you always get gifts from people but you notice that the gifts are either heavy PJ's (no more silk), thick long socks, even gloves and ear mits. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted April 25, 2015 Report Share Posted April 25, 2015 Hi needafix,I was having a similar discussion with a friend of mine who has POTS the other day. We talked about how easy it is to go into isolation with this condition. The symptoms are so difficult and overwhelming, it makes it really easy to want to stay in bed or on the couch, and then there are those periods of time when you are so sick that you can't get out of bed or off the couch. I know for myself I have explained it as best as I can to my family and my friends, some get it, and some don't get it. It's understandable, as most medical professionals don't even understand it yet.Do you have a supportive family or friends that help you through this? I know what you mean about "not looking sick". When I first meet someone and they find out I have POTS, after they say they've never heard of that, they say "But you don't look sick". I think for the most part people mean it as a compliment, when in all actuality it really isn't a compliment at all. Most people don't think before they speak, they don't realize the impact of their words. There are a lot of websites out there for support on Invisible Illness.I've formed close relationships with a few people from this forum, a couple I've been fortunate to meet in person! I talk to them on the phone a few times a week and they've been somewhat of my lifeline! 2 of them have actually become some of my closest friends. They understand what challenges I face on a daily basis and the emotional effects the POTS has is something we have bonded over. Hang in there! Quote Link to comment Share on other sites More sharing options...
needafix Posted April 29, 2015 Author Report Share Posted April 29, 2015 Congrats and thank you on your new title. I have someone living in my apt. with me just for this reason. They thought I was faking until I passed out a few weeks ago. One minute I was fine the next minute I was on the floor. I also have people that call and or tex daily. I am almost 2 hours from my closest relative because I wanted to be closer to a hospital that knew about my condition. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted April 29, 2015 Report Share Posted April 29, 2015 Thank you needafix! I'm glad you've got a support system in effect! I know how difficult it is, but hang in there! Quote Link to comment Share on other sites More sharing options...
needafix Posted April 30, 2015 Author Report Share Posted April 30, 2015 Has anyone gone to a chiropractor or had accupuncture or tried functional medicine? Quote Link to comment Share on other sites More sharing options...
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