potsgirl101 0 Report post Posted May 6, 2016 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 Quote Share this post Link to post Share on other sites
katcanny 0 Report post Posted November 12, 2016 Hey potsgirl101, im new to the forum and same goes for me I have recently been diagnosed and get lonely at times too! Quote Share this post Link to post Share on other sites
EGorman 0 Report post Posted November 15, 2016 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. Quote Share this post Link to post Share on other sites
BillC 0 Report post Posted December 7, 2016 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. Quote Share this post Link to post Share on other sites
MarieR 0 Report post Posted December 7, 2016 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 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! Quote Share this post Link to post Share on other sites
Pots1990 0 Report post Posted May 8, 2017 i am new to it really hard to make friends keep friends . I found Quote Share this post Link to post Share on other sites
CallieAndToby22 0 Report post Posted February 25, 2019 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. Quote Share this post Link to post Share on other sites
Lisajohny543 0 Report post Posted July 10, 2019 Hi dear, dont worry everything would be fine soon. Quote Share this post Link to post Share on other sites
