Struggling with EDS and Feeling Alone

I'm new. I'm not sure how this works but I've been struggling to get my life on track. I'm struggling finding the right people to talk to that can help me. I know I need to get a good exercise routine or even just a day to day routine. But some days I'm in so much pain, stuck running to the loo or just so unmotivated to do anything. I can't say I will do this activity on this day at this time because I can't rely on my body, I am a wheelchair user for long walks and walker or walking stick userfor short distances. I feel very alone. My doctors don't understand EDS and I feel very unsupported because of that. I have amazing family and friends who do what they can to help but I'm not getting anywhere. I just turned 30 me and my husband want to start a family soon but it just feels so out of reach. I would really like to talk to someone who is or has been made quite disabled by EDS. What can I do?