My EDS Challenge Day 15- Home/Isolation in Hypermobile Life

I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.

Day 15-Staying home/ isolation

Not sure if we are talking about the pandemic here with today’s subject or just being stuck at home in general. Going out in public is a gigantic ordeal for me. From the energy it takes to get ready.. (dressed, shower etc)… to deciding what i should or shouldnt eat prior to leaving. What do I need to take with me? ( a backpack full of stuff) to prepare for myself to be in pain. Better safe than sorry. If I eat too much or too little this could have consequences and i will be in more pain. I need to stay on an eating schedule of 6 small meals a day. Also I need to make sure im drinking enough water but going to the bathroom is problematic for me. If i am out in public and the pain begins to present in certain ways, its time to go home. This puts an end to being social. The planning and actually mustering up energy to be with people takes too much out of me so I have little to nothing left for folks when im with them.

Most of my able bodied friends have left me behind to live their lives. Some of them will check on me every few months to see how im doing. I never have any good news or anything new to report. I feel very stuck, and isolated. The pandemic happening actually made me feel LESS isolated but still isolated none the less. I go months sometimes only traveling within a 2 mile radius (for walks and PT appointments). My social life exists all on zoom and via instant messaging only.

Staying at home has made me depressed but its how I protect myself from pain and flare ups, and public embarassment. Too much walking, and too much eating hurts my internal organs and makes my muscles spasm. I dream of going places even just driving myself 15 minutes to get some food would be amazing. My days of driving to work every day or going on vacation to sight see and have fun are over. I really wish I could be on a beach somewhere.

Maybe someday 😭