I have been dealing with vertigo as a chronic condition for almost six years now. I also had singular attacks of BPPV (Benign Paroxysmal Positional Vertigo) twice before the onset of the chronic vestibular disorder. I've had more brain scans than I would like to admit, but they were all looking for gross abnormalities, not fine visualizations of my inner ear structures. So while I have a vague diagnosis I don't have anything more specific.
Having an invisible condition like this means many people don't understand why I can't do certain things or why I am hesitant or uncomfortable in certain situations. Or why I almost never wore high heels for the last six years. I am much better than I was six years ago, most of the time I can drive, walk a straight-ish line, and sit upright. There are times though that I turn to look at my daughter, or to take a step, or stand up, or see something on the tv, or hear a loud sound, and I fall over. And then I'm done for a while. I see the eye rolls and sighs from friends and family when I mention that I'm having trouble. I'm sure it gets old. And most of my family has no idea how it feels.
This morning I got a text from my kid sister, she had to go to ER yesterday, for vertigo. She's been diagnosed with BPPV. And she was so sweet and understanding, while asking for advice and help. I felt like such a shit for being glad that she finally gets it! She was so funny (she really is a funny person) when she asked "how do you deal?"
Honestly?
Practice.
I've been doing this so long that I just compensate, all the time. I know that I need to stay fairly close to walls or furniture if I'm feeling unsteady. I know when to say I can't drive. I know when not to wear heels. I know when to sit down and put my arms on the table or arms of the chair to give my body as much surface area as possible from which to receive positional data. I also know that some things are more likely going to trigger an attack than others. Loud sharp sounds, flashing lights, quickly moving visual stimuli, dehydration, stress... Even my vestibular therapy exercises can set me off, but I have to try to keep up on them to reset my brain to read the damaged signals as "normal" to make me more steady.
I'm not talking about this to get pity. Just to explain why sometimes I am so tired I can barely think, even if I've been laying down for ten hours or more. My body is virtually constantly fighting to maintain balance in a world that feels like it is perpetually moving. Muscles I don't even know exist are adjusting and compensating at all times, just to keep me upright. Sometimes, if I'm lucky, I am almost symptom free, and I feel fucking FANTASTIC. I wish those times were more common. Most of the time I feel a little fragile, just that tiniest bit dizzy or lightheaded or unsteady. Just a little bit, enough to feel "not quite normal." Sometimes I'm absolutely debilitated by the spinning and nausea. Luckily that isn't as often as it used to be.
Yesterday, my daughter was standing on a stool in the kitchen and said "Mama, look at this! The kitchen is moving!"
I stopped everything and ran to her. Put her on the floor and asked her to follow my finger with her eyes (try doing that with a 3-year-old), asked her if the room was still moving or if it only moved when she was on the stool. She was giggling and I asked "was the room really moving or where you pretending?" "Pretendin' Mama."
Oh thank you Universe!
When I was pregnant I was so worried that my child would have vertigo. I would absolutely sob thinking that I could pass this on.
So far so good. She is only 3-years-old. But I'm crossing my fingers. At least if she does end up with a vestibular condition, she will have a Mama who understands.
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