This is it folks: the one-year anniversary of my new life as a part of the chronically dizzy community. A year ago at this moment, I was undergoing my first and only true vertigo attack. Perhaps by 2:00 p.m. (the current time) I had already made it home from the last-day-of-school picnic, and had completed the vomiting, and at this time was stationed with my head on the closed toilet seat, feeling that room was spinning violently in all directions at once, unable to move, while the children variously climbed me, destroyed the kitchen, and brought me snacks.
So. What is there to say about this dubious milestone? I am making progress, gradual progress, but dizziness management is a major part of my life. I'm proud to say that I spent the morning running around doing last-minute errands like a normal person. And then just before I had to go and get Elias and bring the teachers their year-end presents, I completed the daring and fearless rescue of a tiny baby bunny that Bagheera was killing for sport. We have the bunny now, ensconced in a sparkling new critter tote. I put some vitamin E on his wounds and, so far, a few hours into it, he's apparently surviving fairly well. (So adorable!) (Probably the same dude we're going to great lengths to fence out of the garden!)
This is to say, SOMETIMES, I think about things other than being dizzy and dizziness management.
Yesterday, I was at vestibular therapy, where I rode a stationary bike for five minutes with two people watching me, and the elliptical machine for two minutes while seeing stars. I did a tiny bit of pilates on the reformer, which I love not only because I used to do pilates classes regularly, but because I can be horizontal so I don't have to try to exercise while also coping with the pesky forces of gravity. They very kindly draped a sheet over the top of the machine, like a canopy bed, so that I didn't get hopelessly dizzy due to the moving lights on the ceiling. My balance was for shit– tipped over after about four seconds, eyes closed. Eyes open, after several tries, I made it to 22 seconds.
AM I making progress? Sometimes I feel sure that I am– I think, Hey! Look what I did today! Other times, I have to wonder. That can get disheartening.
I read someplace that if your POTS is caused by a virus, you can expect a slow recovery over 2-5 years. So, if that's the case, then I'm only a year into that process.
Other times, I feel quite normal and I think– What is normal anyway? How will I know that I've attained it? Will I even recognize it anymore? Am I here now? Ben pointed out, "Honey, your balance really never was all that great." True!
On June 23, I'm going in for this echocardiogram of the heart and genetic work up. Will this shed any light on the matter? Or should I just forget it? Sometimes I think I should just give up on trying to figure out WHY this all happened. I think, Okay, clearly something bad happened to me last June, and clearly something is very gradually getting better. We're closing the gap between this and normal life. What is gained by any further investigation of it? And for each appointment, I decide, THIS will be the last one and that's final. And then, once again, that appointment leads to another and the cycle repeats.
This time, I'm actually driven by concern for Isaac. If I have something genetically wrong with me, maybe he has it too, and therefore it would be good to know early in his life so that we can work with it better. (I don't think about Elias in this matter, because he doesn't have the red flags that Isaac does.)
In the meantime, I'm what I would call moderately impaired. Not terribly so. I just have to lie down a lot and rest a few times during the day. I have to hit my numbers every day of two liters of water and two teaspoons of salt. I have to watch possible migraine triggering foods, with still quite a long list of problems. I have to wear the damned support stockings as much as possible. Today I'm not because I got poison ivy on one pair, and lost one half of the other pair, and so this morning I was at an impasse. Also it's so warm today, I just would rather not. But I do feel it. I feel my blood being somewhere else, get light-headed at times, and notice the tremendous effort it takes to do simple things while fighting that negative blood flow all the time. But not falling– not that bad. No "sudden loss of posture" where I'm choosing suddenly to lie down on the kitchen floor. That used to happen way too often and not anymore.
The Cymbalta seems to be great. I feel that all the start-up issues are resolved and now I just take it to feel as close to normal as I can. Food issues, too, seem to be getting better. The other day I inadvertently ate some raw onions, which were hiding in something I thought was safe– I did feel it. I felt strange the whole next day. But still functional. I mean, I wasn't confined to bed from it. I still did the day.
So. Progress. A year later I have a much better grasp of what is wrong with me. I feel that in Vince and the neuro I have a good team who understands me, works together in a coordinated way, and is actually reasonably effective at bringing me ever closer to normal life.
A year from now, I certainly hope that this is all a distant memory, that I can look back and say, "Boy– that was a tough year. I'm so glad it's behind me."