End of year, part two:
The first clue about what was wrong came in the emergency room in April. I desperately wanted to get out of there and head home, but before I could leave, the nurse announced that he just had to check my blood pressure again. He checked it on the hospital bed - a bit high for me, but considerably lower than what the EMTs had found earlier that day - and then asked me to stand up.
My blood pressure plunged. The nurse shook his head. "Quite a drop," he said. "Oh, you are most definitely getting fluids."
So the emergency room pumped me full of fluids and had me drink Gatorade - not a bad idea, since for the previous seven hours they hadn't let me drink anything. And yet, when I stood up, the floor still lurched and spun, and my blood pressure still dropped, to 92/54 - although I'd originally been taken to the ER in part because EMTs had recorded my blood pressure at 158/113. Without C's help, I would not have been able to return home; I could barely walk.
No one, including me, thought to check the rise and fall of my heart rate upon standing.
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Depending upon which of my doctors you are talking to, it's called chronic orthostatic intolerance, postural orthostatic tachycardia syndrome (POTS), or sometimes just postural hypotension, diagnosed by a increase in heart rate by over 40 points from a supine position to standing, with a corresponding drop in blood pressure. It happens because my autonomic nervous system, the neurological system that controls the automatic blood pressure and pulse response to body movement and gravity - sitting and standing - has simply stopped working. When I lie down, my blood pressure can be high; when I stand still for any length of time and sometimes when I sit, my blood pressure drops too low to be measured.
In non clinical terms, it means dizziness, severe fatigue, loss of appetite, swollen feet and occasional falling. In addition, the fatigue seems to bring on horrific headaches. The falling is the part that freaks out most people - and strangers - the most; the worst for me is the fatigue and the headaches.
And for me, the most frustrating part is that my symptoms are not consistent in the slightest. On my good days I feel absolutely fine. In fact, this has been a problem, since I assume I'm ok to do anything, go ahead and do stuff - and then find myself collapsed, dizzy, head pounding. On my bad days, the world continues to tilt and swirl even when I am lying down in bed; the headaches make it painful for me to hear or see anything, and I can find my only - temporary - comfort in sleep. Which I'm doing a lot more of, despite occasional relapses into insomnia - these days, I can sleep 14 to 18 hours out of the day.
The majority of my days are medium days. Things are set up here so that my feet can always be elevated, which seems to help, and thanks to having a laptop, I can sometimes type while lying down. And I'm getting used to planning my activities with care.
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The ER was not, as you might have gathered, much help. Although they were the first to actually observe the actual problem, they ignored the blood pressure issues, and decided that I must be having ear problems. At my insistence, C took me home, where I rested for a few days before heading to the first ENT, who after several tests determined that my ears were fine, and something else was going on. He sent me to a neurologist and to a cardiologist who sent me to another cardiologist. This took longer than you might think. The second cardiologist suggested that I head up to the Mayo Clinic. The neurologist told me I had to stop driving.
By June, it was apparent that I could no longer live at home alone. My friends had been beyond marvelous - and this seems as good a time as any to again thank ancient_arcane, coldecho, athenakt, urbanwebkat, and C, who took me to doctors and grocery stores and various errands from April to June, and with gargoylerose, helped me move up here at the end of June.
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I exercised and ate well - fruits, vegetables, lean meats. Admittedly in 2006 I didn't eat much at all, but by 2007 and 2008 I was back to my schedule of walking, swimming or ice skating an hour per day, and eating well, feeling better for it. My fifteen mile hike through the Everglades last March was a major highlight of the year. This naturally increases the frustration - I watch other people eating junk food, and think, why me? And as a former varsity swimmer, I have another issue: when I don't exercise, I get twitchy. Thanks to some very helpful internet forums, I've found different things that I can do while lying down or sitting, which have helped, but I miss my walks - especially since I now live within a two minute walk of a major hiking trail, and a ten to 30 minute drive of miles and miles of trails in state parks, so different than South Florida's limited half mile or mile long "trails" that served as an exercise in frustration.
These days I walk with a cane or use a wheelchair. The cane, alas, is one of those four pronged deals, so it isn't even chic. I keep meaning to put stickers on it, but I forget. I find the wheelchair more horrifying, but I will admit it does help, even if I only use it on days of long term activity.
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In August and September I spent some very unhappy hours at the Mayo Clinic with my parents, going through tests to determine what was wrong. It was horrible.
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My worst days are usually brought on by activity - which can mean, incidentally, a trip to the grocery store. Three days of activity leave me utterly wiped. Because of this, scheduling has become a real issue. In order to have the energy to see people, I need to know in advance - I can't necessarily predict bad days, but I can at least ensure that the day before, I rest up, which means that I'll be able to hang out - not walk, but hang out. Which makes last minute cancellations, however inevitable, that much more annoying - I feel that I haven't just lost the whatever it was, but the day of resting up for it. At the same time, since I'm otherwise pretty much housebound, I hate turning down an invite.
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Incidentally, I made the discovery that my little Grey One makes for a superb companion animal -- she's better at reading my dizziness/blood pressure levels than I am, and on my bad days, she will not allow me to move (enforced by claws) until she determines that I'm stable. This is remarkably comforting.
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This all sounds incredibly depressing, I know. But surprisingly, not only have I mostly managed to avoid clinical depression this year (outside of a few bad days, including this morning), I've been oddly content ever since moving here, when not at the Mayo Clinic. In part, this is thanks to moving to Central Florida; in part, this is thanks to friends, books, and writing (and cats), in part -- well. I can't explain it.
I'm still adjusting to all of this. As noted, one of my biggest problems is overdoing things on days where I feel fine, or feeling twitchy on medium days, like today (I'm pretty tired and mildly dizzy). 2008 caught me so off guard that I won't be making any predictions for 2009, although I'll be trying to write.
In the meantime, I'm about to sell my old car, so, later, internets. Indulge yourselves today. And have a wonderful new year.