Living with Fear

 

    As you've probably read by now, I have Ehlers-Danlos Syndromes (EDS) which means my body creates defective collagen leading to weakened connective tissues.  This causes hypermobility as well as a heightened risk of injury.  That might come in the form of connective tissue tears, sprains, dislocations, you name it.  The other challenge is that my body does not heal well from the injuries, if at all.  That means what would be a simple injury for someone else can be a life-long disability for me.  I have multiple sprains in my body (including both of my ankles) that I have accumulated over the years and continue to affect me to this day.  Prolotherapy can help with some of those, but not all.  

    Enter fear.  Knowing that one small wrong move can lead to a lifetime of pain and disability can cause a person to be afraid to do anything, including rolling over in bed (yes, I've been injured this way many times). I am limited in what I can do to begin with so I'm not going to sustain injuries from hiking, skiing, etc.  But I'd be truly embarrassed if you found out exactly how many times I injure myself on a daily basis just going about my normal life at home.  Some of that comes from a common comorbidity of EDS, Dysautonomia, which messes with my proprioception or awareness of where my body is in space.  That means I miss the step or run into a doorway a little more often than the average Joe.  

    So how do I get out of bed in the morning knowing that everything I do can hurt me?  Very carefully.  Let's just say I DO NOT jump out of bed in the morning 🤣🤣.  I actually keep a pair of walking sticks next to my bed because I often encounter frozen hips when I get out of bed and cannot walk unaided.  Really, I try to be reasonably careful with most of my life, but I don't wrap myself in bubble wrap.  Knowing that I am more prone to injury though, I am more aware of my surroundings and my body movements.  

    What do I wish I did better?  Accepting help.  I can't tell you how many times people have offered to help me up a step, out of a car, or put my bag in an overhead bin and I declined - only to injure myself doing that very thing.  Pride.  Plain and simple it's pride.  For me, pride goes before an injury.  Just last week I was getting on a plane and a nice person offered to put my bag up by I said, "I've got it," and I torqued my thumb.  For days after that I worried, "Is this permanent?"  I'm very happy to report that it seems to have healed ok, but I'm hoping that experienced works to remind me to ACCEPT HELP!

Here's the thing: No matter how careful I am, I still get hurt.  These injuries are long term and cumulative.  So how do I not live in fear each day?  Jesus.  He's got my back.  He watches over me, warns me, and protects me - even from myself.  No, He doesn't wrap me in bubble wrap either, and that's why I still get hurt at times, but He provides for me every step of the way.  Sometimes that's through preventing the injury, and sometimes that through taking care of me after.