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

10 Ways I Manage EDS and POTS

Written by Katie. Posted in About Me, Ehlers-Danlos Awareness, Lists, POTS Awareness

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I have learned a thing or two since I was diagnosed in 2010.  I always have to preface these posts with the fact that I am speaking for myself, since EDS and POTS are such “spectrum diseases.”  However, I thought that some of these may be relatable to other POTSy’s and/or EDS’rs…

1.  I do not have ADHD, nor am I abused.  I am constantly moving and fidgeting because it is more painful for me to hold still in one position.  I have bruises all over me because I have a connective tissue disease.

2.  If I am shopping with you, I am not being rude by walking away from you. If I am upright, I must keep moving in order to keep my blood pumping.  I can’t tell you how many times I have run into people because I am so focused on moving so I do not get sick.

3.  If I go more than 3 weeks without OMM (Osteopathic Manual Medicine), my joints let me know.  I benefit greatly from gentle manipulative medicine.  Especially cranial work.

4. If I go more than 3 days without some kind of cardio/strengthening workout, I become a rice krispy, with my joints snapping, crackling, and popping (and subluxing) all over the place.  I also become a lot more POTSY.

5.  I no longer freak out about flare-ups.  I have learned that it is a matter of riding them out. “This too shall pass” continues to be my motto.

6.  Naps are my miracle drug that allow me to function past 4 o’clock.

7.  I now know that increased neck pain means more POTSiness.  On that same note, my period means more joint pain and increased POTSiness.  There’s not much I can do about it.

8.  I do so much better with managing symptoms and my gastroparesis if I eat smaller meals more often and less bread.

9.  It’s best if I can forget about my inhibitions.  POTS attacks can come on anywhere, at anytime.  So far, I have had to lay down in the middle of Target, Subway, Hallmark, and the doctor’s office lobby in order to keep from passing out.  I have learned to just smile at the gawkers.  (That also goes for the days I need to use my wheelchair and handicap sticker).

10.  These diseases are about pacing, picking and choosing what I want or need to do the most, and making the most of the energy I have each day.  They are also about always keeping the faith.

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