Managing Friendships And Chronic Illness 

I've found my wife and my best friends from church (all of whom knew me before I got chronically sick) the best support. They listen well, sympathise and pray with, and for me. I've tried to help others understand my sickness better by saying what specific symptoms I have when I pull out of going to an event etc. However, some people don't understand and think you just need to try harder etc. I'd like to know someone personally who has POTS, but I don't. I do have friends that have other chronic health conditions that have stopped them from working etc, who have been very supportive.

It’s been presenting as acutely and chronically Ill for 10 years, including recurring syncope arrhythmic activity that lead to asystole , ( and recussication) sepsis ,a coma, and being on home nursing for a year , using a wheelchair for 3.years . After I self paid for lipoaspirate and adipose stem cell transplants, my own genetic testing , ivig and Hyperbarics, I’m improved . I have a monthly fun date with my bestie and see my brother and sister in laws on weekends . Also have learned to play multiple instruments and paint .. Having hereditary alpha tryptasemia and VEDS along with hypogamaglobunemia and a son with hypogamaglobunemia is challenging . It limits social circles. Sure I miss having a big group of friends but I’m ok with me and my own company my sons my husband and lots of phone calls ,My husband travels internationally for work from a city we relocated to , and being ambulatory hospital bound one day a week for potassium infusions, daily Hyperbarics for an hour and a half a day and compression another hour , I don’t have much time for anything but focusing on staving off the effects of heart and kidney failure , my nuclear family and some occasional socializing . I’ve grieved adjusted and accepted . Honestly . I worked 60 plus hours a week for 20 years in finance before becoming acutely Ill. It’s great to be home to support my kids . You have to know you are enough and that you are your own best company . Live life in your lane and accept what you do have . Grieve your losses and then move on .

I have made some lovely friends via the Chronic Warrior Card Swap (it's a world wide programme)