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

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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Comments (1)

  • Tonya


    I’ve always wondered how I am going to get to be able to go to stores without the wheelchair? Maybe I have to keep moving. For me though, sometimes when i walk too fast i feel like im being pulled. I don’t know why. I also walk slower than everyone else.
    When ppl are ahead & look back at me all I think is “I’m walking what more can expect?”!!!! Hopefully in time I’ll get out of my wheelchair at stores.
    I’m learning to loose the inhibitions of it all, it’s not easy though.
    I’m also trying to find the balance of how hard to push and how tired to let myself get.
    Thanks for posting this one!


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