So today I got to therapy ready to get on the full body gym, and my PT pulled me into one of the exams room instead.  She said we were going to talk first today.  Uh oh.  She said she was watching me on Monday and was worried that I am overdoing it, and that we need to think more about pacing.  Ughhhhh, “pacing”…I have developed a strong dislike for that word ever since I was diagnosed.  She asked me how I have been doing after therapy and I was honest.  I said some days I feel great and do completely fine and other days I crash hard.  She asked me about how I was after Monday and I admitted that I went to Meijers afterwards (I was supposed to go straight home and rest), and by Tuesday morning I was throwing up and had to sleep during the day.  Busted. 

I am striving for “SOMEWHAT NORMALCY!”

This pretty much sums it up.  Honestly, the first thing I thought of when I watched this, was “Welcome to my world.”  Out of all the videos I have watched and things I have read, this one has rang the most true for me…And she talks about struggling with POTS as well. I love, love, love that she is working towards a marathon.  Makes me wish I could hug her.

Let me just say that I am realizing that Ehlers Danlos and POTS are such weird disorders.  There is so much inconsistency with how they affect me day to day.  Last week was such a better week for me.  I didn’t need my cervical collar as much, it felt like my meds were really doing a good job controlling the POTS, and I was able to rehab with much more stamina. Then Sunday and Monday came and POTS and EDS decided to hit me like a ton of bricks.  My joints felt so loose and I had to use my wheelchair again.  Sigh.

I keep saying I just don’t understand these disorders.  I have kept journal after journal trying to pinpoint patterns so I can try and predict good days and not so good days.  So far these are a few of the patterns I have been able to find…

I have been told I am now a zebra.

Why a zebra?