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

Down Day

Written by Katie. Posted in Challenges

Heating Pad.


Lots of pain.

Ibuprofen 800’s.


Massage Pillow.






Throwing up.

Crazy brain fog.

No energy.

Hard to keep my head up…Literally.

Trying to fight going back in the collar.

Trying to fight the wheelchair.

Trying to fight the tears and the fear.

I want to go back to normal.

I’m feeling sorry for myself.

I don’t like it.

I am loved.

I have a support system that would do anything for me.

I have great doctors.

I have my faith.

I just wrote a month’s worth of things I have to be thankful for.

I just want to know that things will get better…

Tomorrow’s a new day.

It could just be the best day I’ve ever had.


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Comments (5)

  • Rob


    Hey Katie,

    Sorry to hear everything seems to be overwhelming you right now. I’m new to all this myself.

    I’m not trying to advocate any possible treatment here but Dr Diana on http://www.prettyill.com/ says she has come up with a regime to help people with POTS, and says she has a theory as to why people with POTS get so sick. Not sure if you’ve been on the site or read about it but give it a try. Shoot her off an e-mail, as she’s had to go through similar things.

    Maybe she could help?


  • Theresa


    Hi Katie
    I love you! I wish I could take away all of your pain. You are a fighter and the MOST inspiring woman I know. This day will pass, this week will pass and with faith and lots of prayers I hope you will have better days. Please let me know if I can help with school/work or errands for you…anything to elimiate some of the stress. Thinking of you always


  • Steph


    Hi Katie,
    So sorry you had such a tough day yesterday… I get a lot of your symptoms and know how difficult it is to be positive on those days when it feels like you just keep getting bombarded with “thorns.” I hope today was better and if it wasn’t, just keep the hope that it will be soon. I know it’s hard to believe so sometimes, but it will be better.
    Stay strong, my dear.
    “If you can’t fly, then run. If you can’t run, then walk. If you can’t walk, then crawl. But whatever you do, you have to keep moving forward.” ~ random Pinterest slide… yep. I’m addicted. :-p )
    Big hugs,


  • Uncle Steve


    Hi honey,
    I am sending you a big cyber hug…hang in there…tomorrow will be better…


  • Meghan


    Love you, love you!


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