Awareness Month
October is Global Awareness Month for Dysautonomia. So I’m taking this opportunity to remind myself that I have POTS (postural orthostatic tachycardia syndrome), which is a form of dysautonomia. Anyone who knows me, already knows of course about my chronic illness because I blog, bitch, debate, beseech and then rinse and repeat. I have a life limiting illness. There’s probably a genetic component. Its real. And still … sometimes, I forget. I don’t forget because I’m feeling great and can’t remember that I have a life limiting illness. I forget and wonder to myself WHY do I feel so awful? Isn’t that odd? I have POTS, among other autoimmune disorders, which create a wide range of symptoms for the body and the mind… and yet .. I still sometimes WONDER .. why it is that I don’t have the energy to take a shower, fix something to eat or even sit up and type on my computer.
My son, the stand up comedian (who sometimes has problems standing up himself) came to find me this morning after he woke up. After searching the usual hangouts (my recliner or the loo) he wandered outside and saw that I was curled up like a ball on what would be a yoga mat, if it wasn’t a cheap bench cushion. My head was down, a hot pack was draped over my shoulders, and the dog was standing guard on my side. “Morning Mom, how’s it going?” Best I can remember, I made some soft guttural sound. To which he replied “Well you have POTS.” And I do. And he understands. Because he’s my son. And because his heart rate goes up 40-50 beats a minute too when he stands. He knows what its like to feel like crap. The heat intolerance, the nausea, the pain. The wide range of insane symptoms that can sometimes come on like a flash flood or linger relentlessly for hours.
Odds are from what we’ve learned about POTS and read about connective tissue disorders, our case is probably hereditary which means my mother’s fibromyalgia is likely some form of Ehlers–Danlos syndrome (EDS). And with all these leaves on my family tree, I can still FORGET and wonder why it is that I feel so sick? That boggles my mind. But in truth I think it has to do with the ebb and flow of the symptoms. I always want to apply the scientific method and try and determine .. what I did, how I did it, and how can I avoid one of the BIG crashes in the future. But in truth, I can’t. Some days I just wake up feeling like I’ve been hit by a bus. And at other times, I get an hour or two of ease before the dis sets in. My kids ask me why I stay up sometimes well past midnight and I tell them .. that I had a “window” when I felt better. And I wanted to enjoy it. Because I knew that in the morning it would be ground hog day again.
If even I can forget the nature of my illness, you can imagine what my new neighbors think about the misfit family at the end of the street. Some days I use my cane, not that my hips hurt, well actually my hips DO hurt but that’s not why I use a cane, its more for stability, something to counter lever against and tighten my muscles to help the blood come back up from my pooling legs. Some days I use my wheelchair. And I really hope one day I can get an electric wheelchair so that I can “walk” farther up the street. The other day one of the neighbors saw me without my cane and said .. “Oh, you must be doing better!” Actually I was picking some figs in the side yard and didn’t have enough hands for my cane. I smiled and did my best to give the 20 second explanation of a disease that took my doctors 20 years to diagnose.
There’s something lovely about a zen chick discussing awareness, is there not? Dysfunctional awareness at that. Non-abiding awareness, where I slip every now and zen and forget why it is that I am sick. Non-abiding awareness. When we know our true nature but still at times we find ourselves lost in the embodiment of our physical circumstances. And of course, when we do slip is it not wonderful to have family and friends near by who can hit us with a stick (or a cane) and shout YOU HAVE POTS!
