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potsgirl101

Looking for spoonie friends!

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Hey guys I'm quite alone in my journey as a spoonie I don't have a lot of propel that understand what I go through and I would like some! I'm 18 and have pots and nureocardiogenic syncope :D

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It can be very isolating. I can't work, so I'm at home alone most of the day, and when I'm have a relapse, I can't even go out with my friends and hang out. 20 minutes in the store...tops.

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Hello I am new here only a few months in but understand there is a lot of alone time with this disorder it limits you on doing a lot of normal things. I am here to chat most days so just say the word we need to remember we are still human and need to talk out things. We have more time than most people as we are limited in going out much. There seems to be a lot of great people on this site. We should start a time to just blow off steam.maybe even start a voice chat with an online app has anyone done that here yet. 

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On 5/6/2016 at 6:03 PM, potsgirl101 said:

Hey guys I'm quite alone in my journey as a spoonie I don't have a lot of propel that understand what I go through and I would like some! I'm 18 and have pots and nureocardiogenic syncope :D

Hi there! It can be really hard even with supportive family. No one can really totally understand what you are going through, and how you feel. It's awesome to have this community to be able to talk, if things are good, if things are bad, any old time! 

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I'm new to this forum but not to chronic illness. I've been sick for 16 years and I'm only in my early 30's. Everyone in my life ditched me, including my father, but I have an awesome: mother, brother, and grandfather. I have met a lot of people online with ME/CFS who also have dysautonomia. We started a support group on FB but it's private so you'd have to add me as friend and I'd have to invite you to the group, but it's a friendly bunch just not a lot of posting b/c some of the admin are literally bedbound. 

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