My Toothbrush, My Trophy #pots

Keep Calm and Go Vertical. "My Toothbrush, My Trophy" an article about baby steps with POTS and Dysautonomia Awareness month. POTS Meme. abodyofhope.wordpress.com

Keep Calm Go Vertical POTS

My toothbrush is relatively small and lightweight. My father would say, it’s “smaller than a breadbox.” It is inexpensive and is of no real value, but my toothbrush is a measuring stick for my ability recently. Independent tooth brushing is a high goal I set long ago, and I have finally reached it!

Just one year ago I was unable to brush my teeth without assistance. Whoever was caring for me (usually my husband) would help me to brush my teeth from a horizontal position in bed. This is how I have done just about everything for the past 3 years. With help, lying down. This past year, however, I have been working hard toward more independence and “going vertical.”

I have a condition called Postural Orthostatic Tachycardia Syndrome (Whew! That’s a mouthful!). P.O.T.S. causes my heart to race like crazy whenever I stand or sit and then my blood pressure drops so quickly and sharply that I pass out or nearly pass out. It’s like you are running a marathon for a moment and then you suddenly get very familiar with the floor. It’s quite a riot, let me tell you. It comes along with other problems like vertigo, chest pains, fatigue, head pain, labored breathing, dehydration, and sometimes I feel like I’m having a full-on panic attack all day. But the most disabling part is the passing out disorder (obviously, being unconscious is pretty disabling).

POTS Meme | My Toothbrush, My Trophy #POTS

So, my fight with gravity began by quite literally crawling slowly with lots of rest stops- and only to the restroom. Then, for a couple of years, I was walking slowly to the restroom, held up by a caregiver, bent over with my body in an upside down “L” position so my head was down, keeping my blood pressure up. Now, on my good days, I am working on being fully upright, without help, for (drumroll) about ONE MINUTE altogether. It’s very exciting!

Brushing my teeth means trying to get out of bed, walk about 10 feet to the bathroom, and balancing to brush my teeth without passing out or falling down (P.S., I’m a tumbling expert).

POTS Memes | Weebles Wobbles

Weebles Wobbles Poster

Even though I’m not able to stand or walk vertical throughout, this is HUGE progress in my recovery. A minute upright gained in three years sounds very small, but for someone with an Autonomic Nervous System disorder (Dysautonomia) like POTS, it’s such a big step. Getting to the restroom on my own, and now doing my own dental hygiene on MY terms feels amazing! And guess who has given a stand-up hug? That’s right! THIS GIRL.

I have other neurological chronic pain and chronic illnesses, which many of those with this disorder do. But I am not alone, as so many young women and teen girls have POTS as well. Just know that people with POTS can range on a broad spectrum. There are those who have some mild heart and blood pressure symptoms once in a while, but are functioning normally otherwise, then there are those like myself who are in/out of hospitals for care and are bed-bound for years from the disorder (though hopefully not for much longer…). I’m coming for you POTS!

*******************

Defying Gravity Wicked POTS Awareness Month Plaque

Defying Gravity Wicked POTS Awareness

If you liked any of my images today, they are all original and you may share them, along with my POTS Awareness Plaque.

Great article on Dysautonomia from Elle and the Auto Gnome

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About abodyofhope

I do not know why it is that we must wade through tragic circumstances to find truth. We nearly drown! But under the water, there are pearls. I hope in writing this blog, more will come to the surface. Over the past 11 years living with chronic pain, patient advocacy has affected my life through so many remarkable young people, women and men: SURVIVORS. These individuals are HOPE personified. I wish to honor them in the same spirit they have encouraged me to press on. Four years ago, I became bed-bound from a variety of chronic illnesses after a procedure meant to help the pain condition I had been managing for several years- went bust #BIGTIME. In the last 4 years, my entire life has changed. I have changed, but I am still striving to live my best life possible. Along with sharing inspiring pieces, medical/holistic research, and awareness articles, this blog is also an attempt to put my own pieces back together. Welcome to A Body of Hope, and thank you for visiting. [Complex Regional Pain Syndrome/ RSD, Postural Orthostatic Tachycardia Syndrome (POTS), Dysautonomia, Chronic Intractable Migraine, Cluster headache, Trigeminal Neuralgia, Occipital Neuralgia, Hypersensitivity to Sound & Light, Fibromyalgia, Cerebrospinal Fluid Imbalance......blah, blah, blah] >>> P.S. My headgear is protective for pain. I just rock it hard.

Posted on October 8, 2014, in Bed Bound, Being Myself, Chronic Illness, Health, Hope, Inspiration, POTS/Dysautonomia, Recovery and tagged , , , , , , , , , , , , . Bookmark the permalink. 14 Comments.

  1. I don’t know much about POTs so it was really good to learn more from your post. I love that you are so positive and determined in what is extremely difficult circumstances. It makes me feel more determined in my own situation and I’m very grateful for that inspiration x

    Liked by 2 people

    • Thank you for reading and commenting Lisa. Thank you for your encouragement.
      I hope you celebrate your own small steps in your life.

      PS, there’s something very ironic about posting my first POTS entry and the same morning going to the hospital for an ekg. Just sayin!

      Liked by 1 person

  2. Love it! who knew brushing your teeth could be so much fun, right? Boy the things I took for granted before… heh. Though I’m much more vertical than you these days, I defo relate. Keep fighting, you will eventually prevail!

    Liked by 1 person

  3. Congrats on your accomplishment! Even the seemingly baby steps are huge in the life of a chronic illness warrior 🙂 Keep fighting…you’ve got this!

    Liked by 1 person

  4. Yeah!!! Way to go warrior!! I am blessed to have found your FB pg. and blog!! You are truly an inspiration.

    Liked by 1 person

  5. Wow! Thanks so much Niiki!
    So glad you found me and left such an encouraging comment ❤

    Like

  6. You my dear are a walking testimony. Your story alone will inspire the universe. Much Love!

    Like

  7. Such a great post! I love the title ❤ When POTS knocks you on your backside (literally!) the smallest things can mean the most! Congratulations on achieving verticality (I don't know if that's a word, but it is now!) and on sharing your own truth on your great blog 🙂 I'm rooting for you!

    Like

  8. You are, indeed, a walking testimony! Reading this makes me feel like a cheerleader at a football game, cheering you on. ..love your determination. ❤ And you, of course! 🙂
    .

    Liked by 1 person

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