An Unbalanced Existence

Living with chronic conditions is complicated. Understatement of the year right? Well, lately my vestibular system has gone wonky...ok. So it's been since late summer, but it's been getting really annoying lately. I almost fell on the stairs at work. I almost fell in dance class-twice. I ran into the door jamb at home. I felt like I was going to fall off the ladder yesterday while I was painting (it's only a three step ladder). I lost balance in the shower. This stumbling, clumsy, spinning, and falling forward problem is causing me a great amount of consternation.

Totally not feelin' the balance, my goat friend. You go ahead though. I'll catch up in a few months.

It's tough to isolate which condition is making me unbalanced right now. I've had a bit of a migraine burst thanks to the ever-changing pressure systems that accompany the onset of autumn. I've also been under a wee bit of stress with the start of the school year and the fact that I'm being evaluated this year. I've also had some pressures and worries with the dance troupe and play upheavals. I had a cold that wouldn't let up. Who knows which one's to blame at this point really. It could be any one of them or it could be all of them. I'd just really like it to stop.

You tell 'em, NPH.

I had a vestibular flare many years ago and my rheumatologist sent me to an ear-nose-throat specialist who determined my hearing was fine, but suggested that I do some vestibular retraining exercises. This was about 15 years ago mind you. I did those Cawthorne-Cooksey exercises faithfully every morning. They helped. I stopped running into walls and feeling like I was being pulled ass over tea kettle when I was just walking around. It was always worse in the dark or low light. The exercises helped me feel steadier and more stable. So of course I thought things were hunky-dory and stopped them after several months of consistent application. Things were fine for a long time.

And then they weren't.

Then the weird disconnected episodes started again a few years later. I never felt comfortable calling it a dizzy spell or vertigo as the room never spun and I never felt like you do after getting off of a merry-go-round at the park. I just felt like it would be a really bad idea to move until the constriction in my brain stopped. It's almost like being instantly drunk and removed from your body.  It lasts a couple of seconds, but I feel immediately wiped out afterward. Then, I started having them back to back. It was getting to where I couldn't walk down the stairs at work because I kept being pulled forward by an invisible force. My doctor then suggested that they were connected to my migraines. They never happen when the pain does. Actually, they often happen without direct association to a migraine cycle, which is one of the indicators funnily enough. So I started the vestibular exercises again and also tried the Epley maneuver. I wasn't sold on the idea that the episodes were benign positional vertigo, but I figured I'd try anything.

Doubting moose doesn't think so, but sure. Let's try anyway.

I stopped having episodes back to back for a long time. I kept having them every few weeks, but it wasn't a daily event any longer. However, maybe 18 months later, the frequency ticked up again. I got stumbly and unbalanced again. More Epley, even though I didn't have the nystagmus. It didn't seem to help this time around. Honestly, I was really annoyed because the vestibular issues seemed to be accelerating. The benefit of the interventions seemed to be losing its effectiveness. It was frightening to do things like walk out the door let alone get behind a wheel to drive.

It could happen and it scares me.

Lately though, it's been really bad. I can't do yoga in the morning without wobbling over. Turning around in the shower throws me off. My vision keeps getting blurry. I was hoping that the trip to the eye doctor would fix that, but it didn't. My eyes are healthy and my script is fine, but my eyes fuzz out a lot anyway. I thought maybe it was just the contacts, but nope. They fuzz out even with glasses.  Walking down the hall at school I will suddenly have the sensation that I'm floating or that I'm in a fun house where the floor moves. I can't get through my squat exercises or the drills for belly dance without holding on to the wall or taking things more slowly. I hate showing weakness like this. I can do these things ordinarily, but not right now. I have to remediate myself for the time being.

Yes, Jayne. No one needs ever know that I'm doing this because I'm too scared of falling over in front of everyone.

So I started the vestibular training again. I have a performance for class this week and my song is rather fast-paced at times. Part of me wants to switch songs to something slower. Part of me wants to do the whole song sitting down. That's actually an option since it's arms class, but again it pisses me off to consider it. No one else would know, but I would and it's just something that makes me depressed and embarrassed. It shouldn't, but I never feel that my explanations do justice to the sensations and utter lack of control over my movements.

It's only a matter of time...

I guess it's time to adjust my routine. I've added the Cawthorne-Cooksey back in. I suppose I need to check the inflammation angle, too. Time to decrease anything that causes inflammation like sugar and other high carb foods even though I don't eat a lot of that stuff anyway. Increase the breathing exercises and meditations to manage any stress. Most of all, I need to be patient with myself until things get back under better management. Between the lupus, Sjogren's, and migraines, I guess vestibular involvement is here to stay so I best incorporate a daily routine for it, too.

Fuck you, vestibular system. Fuck you.

ADDENDUM: The fact is, I'm tired. I'm tired of fighting right now. I'm tired of doing everything I can to mitigate my illnesses, yet here I am afraid to practice for my dance performance because I don't want to stumble or be a clutz. I don't want to be reminded that I'm sick. I know others have it way worse than me, but gorammit! I do shit to make it better. I do a lot of wellness crap like change my diet, yoga, medications, supplements, and mindfulness. I drink water more than other liquids. I swish with coconut oil because it actually helps the dry mouth and dental hygiene. I still manage to do strength training and exercise regularly. I get plenty of sleep. Why the fuck can't it be enough?