Phantom (Having) Hands Feeling

I try to write these blog updates with everyone in mind, but sometimes it’s just for my own record keeping.  Writing “Self observations” down as they happen (like this one) so later when I meet with my doctors and develop game plans, I’m not recalling feelings from memory. Also, I know many others share the same experiences. It’s not meant to be a downer, so don’t read my blog if it gets you that way.

Picked up a basketball today we have in storage.  Tried pumping it up with the infusion pump (yes, pumping is so much more fun with the infusion pump).  As I held the ball and was pumping it, the feeling of the ball’s texture felt somewhat foreign in a way I can’t explain.  I’ve played a little ball the last couple of months, so it’s not the first time I’ve got to touch one since my hands have fully healed.  I guess I was just too excited that I got to play that I didn’t pay attention to feeling the texture of the ball.

I’ve had this similar “foreign” feeling recently, sometimes at night I’ll wake up with the phantom feeling that my skin was still gone and the layers underneath were sticking to the bed sheets.  Thankfully it was just a feeling, but I could swear it was real even after I woke up.

I guess after almost 2 yrs of my hands and most of my skin has fully healed, muscles and nerves have “memories.”  What doctors call “phantom” feelings but this term is usually applied to amputees and other victims who’ve lost a limb or other parts of their body.  Your body’s nerves (and the brain wiring network that has built to support those nerves) is still active, though the limb is gone.  ( I learned this in AP Psychology 11 yrs ago :) )  I believe I’m experiencing the same “phantom” nerve memory, but in reverse (in a sense).  While my hands and skin weren’t always “raw” as they were when my allergies was at its worse, my skin wasn’t far off from that.  So there was always a constant stimulus on my skin, whether it was infections, itching, bandaging, or just discomfort.

It’s weird.  Just because my hands and skin “look” ok doesn’t mean it always “feels” ok.  But I’m so thankful and glad I’m experiencing phantom hands phenomenon for HAVING my hands, not thinking I have them after losing them.  Whether conscious or not, I think I’ve been unable to really let myself go and do all the things I SHOULD be able to do now because, while it looks better, time and again I “feel” like I’m not as well as I am and have reservations of using everything I have now.  Just not used to having them and it’s not NATURAL to use them.

P.S. Saw the movie “Soul Surfer”, which helped put these feelings and thoughts together.  Great inspirational movie about Bethany Hamilton, who was a star teen surfer until her whole left arm got taken off by a Shark attack.


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