Posts Tagged ‘ dizziness ’

Pseudo-ble

“I have had a better hold on my symptoms for the last several months,” says the silver lining proudly. And for that I am proud, and I am grateful. Things started getting rougher right around Christmas, culminating in a full week of the kind of daily pseudo-exacerbations that really make one tickle the chin about needing the prefix “pseudo.”

air-stone-2The end of last week began seeing the escalation from moderate dizziness/clumsiness to the kind of fishtank-aerator-inside-the-body level of disability that brought me more than once to tears. Yesterday was less severe a day, so it gives me hope for today being a better grasp at baseline.

Monday I fell out of the chair at my PT’s office. Went to sit, ass off-center just enough to pivot the seat with my body towards the ground. My arms are still luckily quick to respond, and kept me from eating the trash can. I don’t know whether to be embarrassed or glad that there was a witness.

Despite the best efforts of Urogynecology, Pelvic Floor Physical Therapy, Myrbetriq, and even (physician-recommended) Dr. McGillicutty’s Wand for Female Hysterics, I am still sleeping poorly. My bladder wakes me up 3-6 times a night now — an improvement over 12+ times each night, but doesn’t address a now infamous inability to go back to sleep after stumbling across the hall. No matter how tired I am or how many bubbles are rocketing through my extremities.

But today is better than yesterday, and I netted 6 hours of sleep (in various lengths of time) last night. Despite a bad week, I worked with clients and even picked up a new one. I am trying to move away from carbs to vegetables again (it was cold and festive for a while, damnit). Tonight’s dinner was created with less difficulty, but all the love: broccoli soup from scratch for optimal cruciferous goodness.

That is why the house smells like farts. The soup. Really.

 

 

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Wait, Where am I Again?

the-world-must-hate-me

*Just kidding, guys: does any of us ever really know where our futures will lead?

Has disability been a fevered dream, or has my brain been now so warped that it has decided on its own in which mortal plane to dally? Do I have any remaining gullibility that lends itself to hoping I have actually walked in both – all! – these planets? Can I be so lucky as to have remit the symptoms that not long ago I was told to accept as normal while my life was chewed slowly from inside to pieces so small they could no longer be divined?

I lost my cognition, and nearly almost too my legs in the bed from which I sometimes could not move. The world always spun and I trained my body into successful accomodations for a 4-dimensional 3-dimensional existence. I accepted that I might never read another book.

Many of those things have largely ebbed now and I find myself stopping with them as though frenemies had been made with the foes and I am still calling kind farewells from the dock across a blank ocean. I am tired of reintroductions between other selves and feel it is my blessed entitlement at thirty-four to not have to deal with myself in this fashion anymore.

ill-just-wait-hereEntitlement is a distortion of veracity and I know better; there are still symptoms that remain steady or pop up are little haunts. My vision is still blurry and moves like like a poorly-animated .gif. There are times of occasional fatigue, and during walks the dizziness and slurring of words remain palpable.

But I am awake again and for the first time in years looking at the path I want to take in this world. I imagine I should know where I’m going.*

This is How We Learn

not-a-big-dealOf course pepperoni isn’t gluten free. Gluten is in everything, and pepperoni is MADE OF EVERYTHING. Why didn’t I have logic at the ready in the face of hot bread I can eat covered in forbidden cheese?

Because it was hot bread and cheese at a hungry dinnertime. That’s why. I threw caution to the wind. I ordered… double pepperoni. I had just eaten pepperoni on a gluten-free pizza in Brooklyn and had come out unscathed (not all, just most pepperoni is made with gluten, I have since well learned); there were no immediate side effects from this pie either, other than a full belly of Italian goodness.

my-potionsA day passes. The next, I wake up unable to move. The old gang of disabling symptoms is back: fatigue, cog fog, sublime dizziness, slurring words and at times unable to speak much above a whisper. Oh, and the GI tract drumline showed up to complete this celebration of learning. I flipped the memory Rolodex through the last day and caught a flash of the girl making my pizza looking up to ask “have you had our pepperoni before?”

With eyes wide and feeling stupid, Google confirmed my suspicion: of course you can order a gluten free pizza topped with gluten.

Because I’m not about to make such a grievous error again. This was a schooling I do not want again — the worst was a full day, and yesterday was slightly better (I was able to get out of bed, an act which I have grown to love). This is the third day and I feel almost back at the “new” baseline Manhattan proved; I’ve eaten 3c of greens and 1c of fruit already today. I’m drinking some coffee. There is so much to do that being bored would be selfish and I am not going to stick around in Malaise-town. Learning experiences come at a variety of costs, and if I am feeling better again in 48 hours after [delicious, delicious] exposure then I can file the information away if this happens again [I hope to never let it happen again].

Damnit, double pepperoni. I thought we could still be friends.

Walking Vision Photos

Accidental selfie is accidental

Accidental selfie is accidental

Of course it’s going to get difficult and uncomfortable, but there are benches galore along the path at the Riverwalk and an unlimited number of natural photo ops while on those benches. The camera can capture on what my eyes won’t be able to for the next several minutes. In the meantime, while my neurological self bemoans its tough time, I know that my actual human body benefits from the aerobics.

With respect to the moments I can’t walk on or see, please enjoy these photos — they were all taken while my vision was spinning/doubling/blurring. I still consider it largely unacceptable to not appreciate what’s around me, and I was excited to see how nicely a couple came out.

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In the last two days I’ve walked over 3 miles, and for it I get beautiful photos. Things get bad for a while, but just look at what beauty would’ve been wasted on me without a few snapshots. I guess this is my official middle finger to the deep-seated fear of losing my vision. My middle finger tries to keep it classy.

Sanford and Sums

10559923_10152218824763038_6324198464558348437_n (1)This weekend my wife is taking an adaptive yoga training with Matthew Sanford. Have you heard of him?

“It took a devastating car accident, paralysis from the chest down, and dependence on a wheelchair before I truly realized the importance of waking both my mind and my body.”

I was lucky enough to attend two of the training events with my wife yesterday. I ended up being one of three MS patients who were there, and by that happenstance became one of the training aides for a class of yoga instructors.

“What do you like about having sand bags on your lap?” he asked me when everyone was positioned in a simple stance. I was seated with two sand bags on my lap and one on my feet.

“Because I can feel the floor,” I replied.

“How do you know you’re on the ground otherwise?”

“I trust that I live in the reality I see everyone else living in, and therefore I trust that the floor exists.”

My Wednesday night Adaptive class.

My Wednesday night Adaptive class.

…But, in truth, every Wednesday at our regular adaptive yoga class the floor surprises me. I’m set up in a chair, legs strapped together and sand bags on my lap. Doing this, my legs no longer feel the constant panic of existing in a space they no longer understand. Doing this, my feet feel contact with the ground beneath them.

It is a silence I get to hear in my body once a week. More often than not, the unexpected joy of this quietude will bring tears to my eyes.

I’d had a rough day, and I feel like I can see that in the above photo with Matthew.

“When you say ‘dizzy all the time,’ do you mean ‘dizzy’ like you’ve been spinning in circles and suddenly stopped?”

“All the time, yes.” It is the first time, somehow, I have connected that action as personal metaphor. But all the time, yes. At my best I got off the merry-go-round… a minute or two ago. At my worst I am trapped against the spinning disc of reality’s plane wherein all the pieces you’d normally see and register in a linear fashion are spinning as though kaleidoscope.

It’s amazing what becomes “normal,” isn’t it?

sandbag_-_purple_filled_website_2Coming out of yoga class often feels like coming out of a therapist’s office after a good sob; it always reminds me that I still have a relationship with the parts of my body that feel “offline.” It’s so easy to forget everything that’s part of the package when, before your eyes, the package keeps growing before you’ve finished its unwrapping.

Hypotheticals Without Hypochondria

This is a scene from my dad's train layout that he's titled "Family Gathering." Thankfully, our family gathering this weekend required no police cars.

This is a scene from my dad’s train layout that he’s titled “Family Gathering.” Thankfully, our real life family gathering this weekend required no police cars.

Yesterday was a long, but good one — meaning perhaps that though I did wake up late (10:45am is now “late,” unbelieving college self), I did so clear-headed and happy. I got a lot done before scaling towards the plateau on which I currently rest in patient quietude. When it passes, I’ll have done a lot of laundry, there’ll be 7 cups of fresh kale washed and frozen in individual smoothie portion, and a lot of things will be cleaner in the kitchen. Today I began adding small changes to my routinized dish-washing process to keep my hands from being under hot, running water for over 5 minutes.

Dishes need to be washed in hot water to be clean. I have believed that starting somewhere in the deepest recesses of my childhood memories, and I feel like science can plainly back me up here re: food viscosity in relationship to temperature. The trick this morning was to get dishes clean using soapy, hot water but to do so without brandishing a metaphorical starting pistol for my great kaleidoscope races.*

Now heat intolerance is a real easy foe to dispel, either through combative cooling or complete avoidance. Something I can’t sidestep during the day is changing direction. The sink is on the wall opposite the stove, to the left of the trash can, to the right of the fridge and anything else I’d need to do is not on the sink side of the room. To achieve shorter time under the water without having to face adding more turns to my kitchen repertoire (just to, say, space out moments of self-heating-via-faucet between other kitchen tasks) I settled on a cold rinse and scrub before a final hot rinse.

37044736 It’s not as if I no longer possess the physiological capability to turn my body, it’s that changing more than one direction at a time gives my body a spectrum of pause aligned in severity with any increasingly circular journey.

When sitting I can still easily turn my head from side to side in gentle conversation; if I do it while walking, I risk throwing the “on” switch that lives in my [brain/inner ear]. Going up and down grocery store aisles, for example, requires two direction changes at each’s end that results in one long circle after another. If I go up and down each aisle of a grocery store with 10 aisles, I will have changed direction at least 20 times by the time I make that always-gotta-have-the-last-word turn into a register line.

It is why I am often too dizzy to properly handle myself at cash registers. I’m that young lady ahead of you who’s got to be drunk because she’s dropped three cart items and had to run her card twice before payment went through.

It’s four turns to the toilet from my bed, resulting in anywhere from 12-40 turns during the time my body should be staying prostrate for a while in recovery from a day of engaging a minimum of three directions of space. Any bathroom anywhere requires you to turn round to sit; I use the bathroom around 30x day. That, friends, is a pun-intended real pisser.

The poetic irony here isn’t lost on me — I’m trying to look figuratively at all sides of a given problem, and said problem is my own inability to physically negotiate the facets of each literal side toward which I turn.

SILVER LINING: Grocery shopping, dishes done. Time to have a seat.

 

 

*I will spend the rest of my life trying to find succinct turns of phrase that adequately communicate how my bad moments feel.

On Anger and Cutlery

no-matter-how-inconsequentialGetting mad and flinging knives out of the sink aren’t usually unrelated instances for those to whom this happens daily, but for me perhaps it’s a slightly different monkey — getting angry or easily riled now seems to be its own kind of aura pre-discombobulation. If you’ve met me, I will hopefully have come across as the generally-(and sincerely)-positive person whom exited their tumultuous twenties.

Life is short and being a dick about it is not going to do anybody any good.*

That being said, I still get mad at myself. So mad that I’m missing the mark in the short transfer between sink and dish-drainer. “Doing the dishes” gets to be the official chore of dispute today because, as temperatures outside rise, it takes less than ten minutes of hot water on my hands to engage a kaleidoscope of confusion and its side-kick, a 50% chance of finger cutting.

+1 Vegetable Peeler

+1 Vegetable Peeler

My universal serenity in this mortal coil is largely attached, however, to doing what benefits those around me… which on its most foundational level includes housework (it’s easy to start feeling some semblance of control over the many inorganic, utilitarian objects which might otherwise like to mock you — yeah, talking to you dripping bath tub). I’ve recently made some peace with the fact that occasionally doing nice things for myself helps ensure the happiness of others.

Breaks are taken more often and less begrudgingly, at least.

 

 

*I make this statement with a full understanding of the irony implied by tossing it into a post about what a dumb jerk I can be.