My Toothbrush, My Trophy #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).
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).
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!
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
Posted on October 8, 2014, in Bed Bound, Being Myself, Chronic Illness, Health, Hope, Inspiration, POTS/Dysautonomia, Recovery and tagged awareness, Cardiac, Chronic Illness, Dysautonomia, EDS, living with P.O.T.S., Neurocardiogenic syncope, Postural Orthostatic Tachycardia Syndrome, POTS, POTS Awareness Month, Recovery, Spoonie, Syncope. Bookmark the permalink. 14 Comments.