10 Ways I Manage EDS and POTS
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.
Tags: Awareness, Ehlers-Danlos, Lists, POTS