Salty Zebra

      This morning I read an article written by a fellow Zebra (person with EDS) on the benefits of social media for those with chronic illness.  She shared that it helped her to feel connected to those she cared about even when she couldn't see them physically.  Further, she said that it helped her feel like she can, "still 'travel' all over the world and 'visit' friends and family from all walks of life."     For me, social media has a significantly different effect.  I've struggled as my abilities declined watching friends and family out and about doing wonderful things together.  I felt a heavy weight on my heart and questioned if I was a good mom anymore.  I struggled with jealousy at the things that others were able to do easily that I couldn't even consider.  I found that every time I opened Facebook on my phone it brought my mood lower and lower and I eventually had to cut myself off from it entirely.     These days if I want to connect vi

       I am an introvert blessed with a family that loves to be with me.  I love being with them too, but sometimes I feel so... smothered?  I wouldn't change it. I so enjoy that they seek me out and want to spend time with me.  I love them so much, but sometimes it is SO HARD to say, "Yes, let's hang out!"       If you're not familiar with the concept, WebMD defines it this way, " An introvert is a person who needs to recharge their social battery rather than being energized by socialization. The characteristics of introversion tend to include spending time in solitude, avoiding or rarely participating in large group activities, or preferring interactions involving one or two close friends."     So that means I need time alone to charge my social battery, and that's not something I get enough of.  You'd think someone who is stuck at home much of the time due to chronic illness would get plenty of this, but my husband works from home most of the

      One of the main reasons I am writing this blog is to find my community.  Because of the conditions I deal with, I find it very difficult to get out and meet people and then maintain in-person relationships.  I'm an introvert at heart so being social is draining, but at the same time I have come to realize that it is critical.  It is so easy to become isolated when your health traps you in your home.  Yes, in this post-Covid world we have a bunch of options for connecting virtually like zoom and teams, but it's hard to meet people that way. Also, people around me don't get me.  I look fine, they don't understand why I can't go for a walk or go to a party or volunteer with them.  They don't understand what it would cost me if I did.  Sometimes I do because it's worth it, but I can't do those things on a regular basis.  I'd love to connect with people that get what my life is like, people I can be real with. I've hoped that by putting myself o