I’m sitting…ok lying here after PT trying to get my body to move but not having much luck.  I guess that is to be expected with my first PT session after prolo.  I did surprisingly well during therapy but I am definitely feeling it now.

On the Dysautonomia POTS FB page this morning, this status caught my eye:
“It is important that you recognize your progress and take pride in your accomplishments. Share your achievements with others. Brag a little. The recognition and support of those around you is nurturing.”  ~Rosemarie Rossetti


This quote was very timely today. 

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…

This week I feel I like I finally hit my stride with physical therapy.  I felt like I was an actual athlete again for a moment.  That feeling is a high, let me tell you.

This time around, it is comforting that there is a plan in place.  It is comforting that we actually know what is wrong. 

In my first round of PT from July to October, I would go to each session and we would try so many different things, not understanding why I was getting so sick with standing up exercises, and why it felt like my body just kept breaking down and falling apart no matter what I did.  I was living in a fear-gripped bubble at each session, as I was being tested for MS, ALS, other neuromuscular diseases, nutrition deficiencies, vasculitis, etc (throughout the same time frame of these therapy sessions)…

This week was a struggle.  I think I cried more this week than I have in a long time.  I have been pretty quiet on the blogging front, because I have tried to take Thumper’s advice of, “If you can’t say anything nice, don’t say anything at all…”

On Sunday, I knew this week was already going to be tough.  I had gotten used to having Brad around the last two weeks, and I knew I would have to adjust to being on my own again during the day, since he went back to work Monday.  That in itself, got me kind of down.