Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Physical Therapy Week Two

Written by Katie. Posted in Physical Therapy

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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)…

Looking back, not knowing my true diagnoses was not the only thing holding me back from making progress, but the fear contributed as well.  I didn’t know how hard I could push my body, since I had no clue what was happening to it; I was so afraid to make myself worse, since I knew in my heart that there was much more wrong with me than herniated discs…I just didn’t know what.  No one knew.

In October, my PT made the decision that it would be best for me to stop therapy until we really knew what was wrong with me.  I remember leaving my last therapy on October 6th feeling so hopeless and deflated.  I felt like no doctor would ever figure me out.  What a difference a few months makes.

As I have learned since November, because POTS and EDS are two rare disorders, not many people know much about them, or have even heard of them for that matter.  Therefore, most of the people treating me are learning right along with me, which is okay with me.  All I ask is that the people on my health care team are willing to learn and change things as needed as we plug along…I love that I feel I have found a physical therapy team that is doing just that…I am being treated like I am a partner in my treatment, just as it should be.  I am thankful I am not being treated as “You are the patient, and I am the expert…”

I finished week two of PT this week.  The first week was mostly trial and error…This second week has still been trial and error, but I have been following more of a concrete plan of attack.  As I mentioned before, I am doing two to three minutes of exercises with one minute of either sitting or laying down rest (depending on how I feel as far as dizziness, and sickness) in between.  I am working through a circuit-like regimen that works various parts of my body, and that alternates with standing, sitting, kneeling, and laying down exercises.  My therapist talked to me yesterday that she worked it out so that I can come early or stay late and work through more exercises.  This makes me so, very happy.  This time around I feel like all of the therapists are really pulling for me.  

Yesterday I stayed late and I made it through sets of rows and squats on the body gym, back stabilization exercises, and sets of using my arms on the recumbent bike.  I was proud of myself yesterday.  I felt strong(er) and I loved the independence I was given in the therapy gym.  For a minute it felt like I was back to being a regular athlete, just doing conditioning. 

I’m also trying out new tape jobs.  Monday, my left shoulder blade was taped along with my first few ribs to give me more stabilization, so that they would not sublux.  The tape helped with stability, and I kept it on until Tuesday night when I realized I was breaking out in hives because of the tape.  Always something, I tell ya.  Thursday we tried a different tape job to help give me more shoulder and neck stability.  This technique also helped.  This time around we used caladryl lotion before I was taped, and we used a different kind of tape.  My PT also told me to take it off before I shower, since I broke out in hives after my shower on Tuesday.  She’s thinking the moisture and heat may have caused the reaction.  It’s all trial and error, you see. 

There are PT students who have just started their internships at therapy.  Many have asked to talk to me about my disorders and/or observe.  Maybe part of my purpose is to teach people more about these little known disorders?  One student in particular has been following me closely.  She has been reading up on my history and Ehlers Danlos. 

On Wednesday for therapy, I had my soft tissue work session and I was fitted for more sturdy compression stockings.  I was also given a tutorial on how to put on my compression stockings without ripping them, using special gloves.  The student asked if she could observe my session.  As I finished, we were talking and she asked how between my nerve being accidentally removed from my arm when I was a gymnast, and through all the surgeries and therapy I did to regain function, along with what has happened in the past year, how I still come to therapy smiling and positive after all of that?

Her question took me by surprise.  I just shrugged it off and said something like, “I’m not all smiles all the time. Just ask my husband.  And you learn that life goes on.”

In the car on the way home, I thought more about what she said.  And I thought about other ways I could have answered her.  Like I’ve spent years in psych therapy which helps.  I have learned that you gotta look at these things like curve balls rather than life ending tragedies.  That I’m 29, which is way too young to be bitter and angry.  That smiling usually feels better than crying.  That negativity won’t help me in recovery. 

That student doesn’t know it, but she filled my bucket that day.  She encouraged me to continue working hard towards my goals, and to try and continue to keep positive…I truly feel that positivity contributes to healing.

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