Having Surgery when you have a chronic illness can be frustrating because you never have a “full recovery.”  Our baseline is different. Someone, with no prior health issues can have a surgery and that surgery or the surgery with other therapies can essentially get them back to their health baseline.

When you have a chronic illness its a bit of a crap shoot.  What issues will this surgery help?  Will it even fix anything?

Tonight I had a mini melt down. I remembered that this surgery is not a cure all.  Sure, it’s life changing, but it won’t completely change everything in my life.

I haven’t been able to do much, and I am just hating it.  I want to do something.  Especially something with my hands.  I want to create something.  I’m an avid cross stitcher and I haven’t been able to pick up a needle since my surgery. I thought I could try loom knitting again, but nope, I couldn’t find everything I needed.  I started a scarf last winter, but I became frustrated and gave up after I tried to cast off of the loom and it started to unravel.  Finally I settled for coloring in an adult coloring book that friends bought me after the surgery as a get well gift. After a minute of two it began to hurt my neck too much so I had to stop.

This reminded me off all of the things that I want to do, but have yet to figure out.  Of course there are so many active things I want to do, simple things like hiking or bucket list items like skydiving, but one thing that I really want to do is learn to knit and crochet.

It sounds so simple.  So many want to learn, and they just do.  The physicality of it isn’t an issue.  But, my hands just don’t work that way.  My hands cramp up and my fingers aren’t stable. With many forms of  Ehlers Danlos Syndrome, unstable and hyperbole joints are a main characteristic. My hands are literally not capable of holding knitting needles or a crochet hook properly.

Yet, for one fleeting moment I though, “Oh, once I heel I can finally learn to knit and crochet.”

So here I am, once again being reminded that this surgery is just a little fix.  Every joint that wasn’t fused 19 days ago is still going to cause me issues.  I can still sublux or dislocate other joints at the drop of a dime.  My autonomic nervous system is still not going to regulate itself. My mast cells are still going to act up.  Every other issue I took with me while I was wheeled into that operating room I was wheeled back out with.

It’s only been 19 days.  I still don’t know what issues this surgery may have fixed or improved.  I know I should be optimistic, and I usually am, but sometimes it’s hard.