Isolation

[Dystasysta]

In myearly sixth decade, i face different issues in making new friends while dealing with this "condition'. I wasnt diagnosed propelyr;u until my late 50s and by then i was unable to return to work or socialize in the way i had and the many ways people find freinds , work peers, PTA all my kids very grown and dispersed thru out fe states. the gym, going out to large socical functions,that include foot cant eat, crowds and stimulation my ANS just cant handle well anymore .... At my age feiends have moved, passed some and others very involved with grand kids ect( wish but none yet lol) . Its hard enough for our familises to grasy this condition trying to meet new folks with your ahem best compressed stocking foot forward and carrying tem bollets of gatorade just very difficult seems. Bowling is out lolo .. I would so appreicate any hints ideas as how to beat or at least hold at bay this symptom or maybe better worded result of the POTs, Hyperadrenergic syndrome, NCS , Gastroparesis with bynch of other stuff thtorwn in for good measure. There seems to be n onone in the strate of Ct. least in New haven county , shoreline etc area i can connect with. Just to have a freindly voice once a week that really gets it or ocsional cup of tea or if really really doing well catch a local movie thats on its way out so auditorium is empty be a true blessingI have spoken to local library that even offered a room for monlthy meeting if i could start one, and my Ep and other drs think its so needed in the area but i cant post anythingin the ir hospiutal or offices, Not sure why maybe privacy rules. So im not looking that grandeur a dream and rightn ow reaching out to anyone local. Im older but im young at heart and am told have the sickeest no pun intended sense of humor id love to share with a local dysta systa or bredren. I love and appreicate the few that i have met a;beit they are states and sates away from ,e they have been my salvation.Anyone with suggestons. . Blessings to you and your familiesand all touched by this unpredictable thing!

[Chaos]

Hi and welcome.

Think it's hard for people at this age to meet folks even when they don't have our health challenges, but then when you add in those...it really becomes a major issue.

I'm states and states away from you, so can't offer to go to the movies or out to tea with you, but I certainly appreciate a sick sense of humor so feel free to socialize here anytime. Personally this site, along with a couple others has become one of my main social outlets (sad but true) on many days when I can't get out to do other things. I am blessed to have family around so that is another source of socialization for me. Family and a few stalwart friends who hang in there with me. Frankly I don't have the energy to keep up with a lot of people so a few friends are all I can handle.

Have you enrolled in the Meet Others program...which will shortly become the DINET Connect program... on here? That might help you find other local people near you. Dysautonomia International is a Facebook group that has a world map that people can add patients to and you might find someone on that site as well.

Sorry you are having struggles. Hang in there!

[corina]

Hi dystasytasue, welcome to the forum, I'm sure you will find the support you need here. We are from all over the world, I know I felt very lonely before my husband found me this website and forums. I love having made new friends here and found support and the comfort I needed.