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

R & R

Written by Katie. Posted in Physical Therapy

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 told her that this is my problem…I know how to train.  I trained 30 hours a week growing up to do a sport I loved.  But I am not sure how to train now for my new sports of EDS and POTS.  These are two completely different animals. 

My PT talked to me about the importance of rest and recovery for me and how it is just as important a part of my therapy program as my exercises and medications.  She explained that each cell in my body that expends energy needs the proper recharge time to deal with these disorders.  I told her that that made sense, but that I feel so guilty to just lay and rest during the day.  I said I constantly feel like I need to be doing MORE to get better.  

This is when she bopped me on the head and said, REST and RECOVERY is part of the equation in getting you better! Sighhhhhhhhhhhhhhhhhhhhhhhh. 

I told her that I feel like I HAVE made progress in the last couple of months and that I feel that therapy has been crucial in making me stronger to help control the pain.  I also explained that I feel like the activity I have been doing has allowed me to slowly become more functional.  She did not argue with me, and in fact agreed with me wholeheartedly but, again stressed that part of therapy with two chronic illnesses is to learn pacing and to figure out my limits.  And the fact that I was sick Tuesday showed I surpassed my limits and it caught up with me.  

So long story short, my PT is going to call Dr. Lavallee and discuss with him his views on training with EDS and POTS.  I am going to work hard on resting and trying out some meditation tapes after I complete an exercise or therapy session.  I am going to try not to feel guilty because “taking care of me is what is most important, and R & R is part of my therapy program.”    

I am going to continue to keep a journal to recognize my limits.  We talked about the analogy of being given a two liter of energy everyday and figuring out how I was going to expend it to do what I needed to do (while PACING the use of my 2 liters) to get me to the end of the day still feeling okay. 

My therapy program is going to remain consistent with what I have been doing.  We will continue to add exercises and more and more joint strengthening as I go but I must keep up my end by allowing enough recovery time each day.  That is my new CHALLENGE, which is gonna be a hard one for me, but I will do my best.  After many tears on my part, we hugged it out and she told me she was proud of me and that I have come a long way since summer and she needs to ensure that I keep progressing.  I told her I was proud of myself too.  I was then allowed to go to work for the next half hour in the therapy gym.  And now I am home, sitting here resting, resting, resting…. 

“Rest when you’re weary.  Refresh and renew yourself, your body, your mind, your spirit.  Then get back to work.” ~Marston

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