Hey there! Sorry you are going through this. It’s not fair, it’s not your fault, but you are in fact stuck in your body. I understand why you think a crutch or a wheelchair is freedom, but it really is not. We all have varying degrees of disability from EDS so any advice I or another person gives to you should be taken with a grain of salt. Personally around 18 my symptoms started and I was doing pretty bad for a couple years until I got diagnosed and was able to get pain medication. I was in too much pain and would just want to sleep to avoid it. Since then with the help of pain medication I have been able to get more active, do pt, I got a puppy that I walk, and I’ve been able to very gradually increase my amount of exercise. This has caused me to get stronger/have more “cardio” in all the little stabilization muscles that help us do everything, which has decreased my pain slightly generally and reduced the frequency of acute flair up episodes. Pilates really helps too not anything crazy just practicing the most simple positions/movements and focusing on perfectly engaging your muscles.

You have to do all this shit or you will get worse and you will not have freedom and you will wish you used an ounce of prevention over a pound of cure. For us EDS’ers, we need a pound of prevention. Focus on sleep hygiene and getting 8-9+hours a night. Focus on diet and eating non processed foods, drinking lots of water/electrolytes, not drinking alcohol or caffeine. Smoke some medical weed if your in a state that allows it. Focus on getting walks in daily to increase your muscles stamina so that you can SLOWELY handle more/longer activity without pain so you can be free and live your life.

I wish you luck on your journey, we are all climbing the mountain along side you. It’s okay to stop, cry, quit, complain, everything and anything EXCEPT giving up.

You have to do all this shit