We’re not lucky… but we’re fortunate.

Fortunate – by Atmosphere

I highly doubt that y’all think about sex
Anywhere near as often as I think about death
Go ahead and shout at the top of your lungs
But don’t wake the baby up, we got a lot to get done
That little light indicates a connection
And if it’s all the same I’d like to make a suggestion
See, if everybody on this comet agreed
We could set the clock to whenever we want it to be
I just might just modify the mileage
I don’t know much, but I’m confident the fight’s fixed
So high that I feel like a pilot
Falling out the sky full of brilliant brightness
Hurry up, stir me up
You gotta learn the words before the whole Earth burning, but
We wouldn’t even need to recognize your birthday
If you were the center of the universe in the first place
If I had feathers I would fly away
If I felt fresher in fur I would hibernate
If I ever figured out how to communicate
Maybe then we could accumulate
For now face the wall, I ain’t the same as y’all
A real friend wouldn’t make you take the fall
Sometimes life’ll try to break your balls
With the long list of missed wakeup calls

You know I wanna feel special
Walk around the festival carrying a big stuffed animal
I try not to make a mess though
Gotta stay sensible, ain’t nobody coming with the antidote
I wanna watch you grow
And I wanna leave the planet better off than it was handed to me
And I don’t know, there’s possibility
So I settle for selling my soul to the slaves of the land of the free
I don’t wanna leave my family tree behind
I don’t anyone to miss me like I miss you
But I don’t wanna take up too much time
I’m not trying to run away from the line we drew
The sunshine seems to feel so seamless
The soldier is a dreamer and a realist
And history sealed this
Taught me that a hero ain’t nothing but a field trip
Nah, I know you’re down to do something profound
Put a stick in the ground to prove you was around
No amount of time will ever be considered enough
I’m trying to tether it up and live forever through love
We’re not lucky, but we’re fortunate
I’m pretty sure of it
And all the life we wasted trying to make some bread
Might’ve been better spent trying to raise the dead

Dehumanizing

Dehumanizing: to deprive of human qualities or attributes

Someone in one of my support groups used this word to characterize MD.  I was stunned (and a bit jealous) at how I had never thought of it before.

We humans have that pesky little part of the brain known as the hypothalamus – which is responsible for a ton of hormone release, including those hormones involved with fight or flight.  This is lovingly referred to as the animalistic part of the brain – for instance, hunger is primarily controlled here.  I am not an expert on the brain, but I hypothesize when an MD attack strikes the rest of the brain is attempting to steady the world, that fun loving hypothalamus kicks into high gear.  When I have an attack I feel like an uncaged animal.  My ability to concentrate, control emotions, even speech is affected.  My hypothalamus goes into overdrive – here is the fight or flight.

The philosophical question is: how does one-self flight from one-self?  You can’t.  You can’t ‘flight’ – unless you have the ability to disassociate, which is another super intriguing psychological phenomenon.  You are forced to fight, often silently, while the rest of the world whirls around you (yes, I’ll just leave that pun right there).

Here is how dehumanizing this disease is.  When the vertigo hits, even the bad off balance days, I don’t feel human.  I feel like an animal.  My primary concerns: using the bathroom, eating if possible.  That’s all I get.  I lose all control over parts of my body.  I couldn’t put a 10 piece puzzle together some days.

Sort of in line with this train of thought, one of my great friends from Facebook posted this amazing meme today:

Chinese

If you click on the meme it gets bigger so you can read it.

The meme is pretty self explanatory so I will leave it at that.

MW

Brain Fog: Dennis Stelling

DISCLAIMER: I wish I could take the credit, but I can’t for writing this one.  My new friend Dennis Stelling wrote this on his blog: http://dennisstelling.blogspot.com/2015/03/brain-fog-exposed.html?spref=fb

Brain fog: that moment in time when you are having a discussion and …………Wait what was I writing about again????

Oh, yeah. Brain fog.

That moment in time when you meet and old friend and…………….Who was I talking to?????

Oh, yeah. I am trying to explain brain fog.

This should be easy. It’s right on the tip of my tongue………………or fingers………….or???

You get the point.

But there may be a logical explanation of why we Menierians (I stole that word) have trouble remembering things.

It was recently explained, although not directly, to me as it pertains to hearing loss.

You see, our brain is an amazing computer. One that cannot be copied for it’s complexity.  Each part of the brain is created with it’s specific portion to do a specific job.

But here is the interesting point.  If a part of your brain is not doing the job it is designed to do, it doesn’t just sit there waiting for something to do, it does something else.

Brain scans have been done of people who are born deaf. In the beginning, the portion of the brain that is supposed to understand hearing just sits there. But as time goes on, that portion of the brain is used for something else.  Maybe it is sight. Maybe it is taste. Maybe it is reflexes. The point is, the brain finds itself too valuable to just sit there doing nothing. And in the case of deafness, by the time a person is 12 years old, the entire brain is occupied doing something and the portion of the brain used for hearing may be lost. Permanently.

I have been in some Deaf (note the capital D for Deaf Culture) groups where I hear them saying that they have better eyesight or other senses than hearing people, and that may very well be the case because the brain is using more than the originally planned “space” for those senses.

Now, for my interpretation, with some scientific backing, for “brain fog”.

Being a computer, your brain loves information. The more the better. It can’t get enough.

Also being like a computer, it goes by the same rules that I learned in my first exposure to them: GIGO- Garbage in, Garbage out.

If the information that your brain is receiving is “garbage”, it doesn’t know what to do with it so it spends a lot of time and energy trying to figure it out.

And when something completely new and foreign is introduced into your brain, such as tinnitus or vertigo, it needs to find someplace in the brain to try to figure out what it is supposed to do with it. That means something else it was doing, it no longer has time for.  The more intrusive the “new garbage” the more space and energy it spends figuring it out.

Again a computer analogy.  How many of us love our brand new computer? It runs fast! It never locks up! But over time, as new programs are added, and errors occur, it slows down, s l o w e r, and s  l  o  w  e  r  and s   l   o   w   e   r.

Here is my scientific backing.

In the case of people who are born deaf, and later in life (past that magical 12 year old point) get a cochlear implant, the part of the brain that is supposed to understand hearing is busy doing something else that the brain finds important. It doesn’t stop doing that because it now is hearing things. It doesn’t know it is supposed to. Therefore, the sound is going to a different part of the brain. Brain scans are showing it going to the part of the brain responsible for short term memory! AHA! Brain fog!

The same may very well be the case when we start having tinnitus and vertigo. The brain is using a part of the brain not designed to figure out what the heck is going on, so it uses the energy from short term memory to try to sort out why there are birds chirping in my head 24/7 and why the world spins.  No time for things like memory anymore!

Now, wasn’t that a great (in my humble opinion) explanation of brain fog?!

You remember it, right?

Yeah, I didn’t think so.

‘Til next time

Dennis

Rocks right???

MW

A topic no one wants to talk about

Let’s talk about sex.  Not just sex, but intimacy, which doesn’t always mean sex.

I promise not to get explicit, but for us Meniereians who are in a loving, intimate relationship – intimacy can be difficult.

If I have somehow not made it clear by now, MD affects each and every aspect of our lives.  It is no biased against what it can ruin.  Going out with friends, concerts, big family get-togethers are not off limits.  Sex and intimacy is no different.

I think it’s important I write this because we all struggle with this but because sex still remains this taboo topic we choose not to talk about it.  Or maybe it is just too painful.  But we have all felt it, the longing to be intimate but it simply isn’t possible.  Not only the positional issues, but the endurance, the ability to let everything go and focus on your partner is no easy task when you feel like you are on a pontoon boat all the time.

Not only can the act of sex be difficult, but just simple intimacy can be uncomfortable.  There are some days when I don’t want to be touched – my skin feels like it’s on fire, physical touch hurts.  Sitting on the couch and holding hands can be awkward.  Matt has restless leg, so he is always needing to fidget.  I need total stillness.  For some reason when something is near to my face I have a hard time concentrating, it can put me into a spin.  When he comes in for a kiss or a hug it can throw me off.

You know what I am talking about don’t you?  We don’t talk about it because it is no f’ing painful.

I think there is also the issue of partner vs. caregiver… where is the line drawn.  It’s difficult to be intimate when he has to hold my hand when I am going to the bathroom.  Fifty Shades of Gray makes taking a bath together sound sexy – but after my second surgery Matt had to bathe me while I clutched the sides of the tub and wept.  Not sexy.

The other issue is body image.  I have gained weight, as in I am the biggest I have been in my whole life.  I am in no way fishing for compliments.  I also am in no way shaming women who are my size or larger.  I feel unhealthy, I feel fat.  I am a feminist, women of every size, shape, weight are beautiful.  Confident women are beautiful.  I am not confident at this size.  This is a small part of the difficulty I experience when wanting to be intimate.  On top of everything else – will the world spin if I lie down?  Did I remember to take my meds this morning?  I feel fat.  I look fat.  I should have showered this morning.

Thank goodness I have such an understanding man in my life who is willing to be patient with my crazy, silly, messed up, turned upside down life.

This post was super difficult to write but I think it’s important we are comfortable to discuss it.

MW

When your body betrays you…

Today, I ventured out into the world.  By myself.  This is monumental.  It’s Matt’s first day of his new job.  I wanted to practice being a good wifey so I told myself I would gather the necessary supplies for dinner.  I walked through Byerly’s like I owned the place.  Head held high – acting like my shit don’t stank ya’ll.  In my mind I was chanting to myself, I can do this.  Is that lady looking at me because I can’t walk a straight line?  Who cares, I am doing this.  A taste of freedom.

These are the good times.  These are the manageable days.  There are days when my body betrays me.  These are the harder ones.  I have to pee.  Like, I really have to pee, but if I get up the room may spin, I may fall.  I want something to drink, so I get up, moving slow… the room shifts.  I fall.  Knee hurts for three days.  My body betrays me.  I want to tell Matt a funny story and can’t remember the punch line because the brain fog is so heavy.  He looks quizzically – like is there a punchline?  Damn it.  I can’t remember.  I try to not cry.  Sometimes I do quietly when he isn’t looking.  He gets frustrated when he asks me a question and I just say yes.  I have no f’ing idea what he just asked but I just say yes because it’s easier than saying ‘what’ for the 3405034598th time.  He knows I don’t have a clue what he just asked and gets frustrated I don’t just say what.  What he can’t understand is the embarrassment that comes along with this.  Just because we have been together for almost nine years and he has seen me at my most vulnerable, I still want to put on the smile for him.  I still get embarrassed.  I still try to trick him into thinking I am ok.

I am almost 27, I should be spry – spontaneous.  I am hardly able to be.  I stand up with intent and forget what I am doing.  Sometimes I get hyper-focused and jolt back to reality and it takes a minute to remember where I am in time and space.  My body betrays me.

The moral of this story is don’t take for granted the good days when you have control over your body.  I usually refer to my physical body as my husk – because that’s all it is to me.  I grew up corn-fed in the Midwest so I equate these feelings to when you shuck corn on the cob.  When you peel away the husk (physical body) you expose what is truly inspiring about the corn (the spirit, the mojo, whatever you want to call it).  That dead, crusty, dry husk protects what really matters.  My physical body is foreign to me – just a husk.  It’s whatever the gooey insides are what really matter.

MW

Heated

I read a beautiful blog post from Huffington Post – it was a teenage chronic who was writing about how difficult it is to be diagnosed as a teen with a chronic illness.  It doesn’t matter what her illness is, because all of our pain is the same.  Our anger, frustration, sadness, loneliness, it’s all the same.  Grief is the hardest feeling to tackle.

I there is one thing that gets old fast when it comes to this disease is the sympathy – and pity.  I don’t think non-chronics truly understand the difference between sympathy and empathy.  I beg for empathy, not sympathy.  I want you to put yourself in my shoes, not feel bad for them.

I feel bad for myself enough, the last thing I need is a pat on the head and “there, there, things will get better”.  To be brutally honest, things don’t get better – you learn to MANAGE.  A chronic illness never goes away.  My symptoms will probably never go away.  You know how big a pill that is to swallow?  Try to swallow the state of Texas and maybe then you can grasp the finality of a chronic illness.

An even bigger pill to swallow is the chances of me being fully deaf someday.  Not losing my hearing from old age, but being deaf in the next decade or two.  I will be 27 in May – I want to hear my children call me mommy, I want to hear my teenagers sneaking out of the house – I want to hear my grandchildren.  I may be able to.  I may not.  The cosmic joke of it all is that I don’t know.

Again, I feel bad enough for myself.  The last thing I need is pity.

I don’t tell you these things for you to feel bad for me.  I tell you them so the next time I walk out of a room at a get-together or I start fidgeting you understand why.  I tell you these things so when I turn down a night out or I leave early, I am not being rude.  I tell you these things so the next time you meet another chronic you don’t give us the classic non-chronic look.  The same look you give an abandoned dog in a shelter.

I tell you this stuff because I am still here.  I AM HERE.  LOOK ME IN THE EYE.  I am not contagious.  My disease may be invisible, but I am not.  I am a fighter.  I will never give up.  My reason?  All of you.  My family, my friends, my partner, all of the people I have met on Twitter and Facebook, for Viv.

Sure my anger bubbles to the surface and makes me lose control.  Sure I still swear at God, cry my eyes out, beg for death during an attack.  But that’s the beauty of being a chronic.  I wake up everyday and push forward.  This disease is a bitch and I refuse to let it define me.  I have learned how to cage my monster.  I do it by binge watching Fringe or listening to rap music, digging in the dirt in my gardens, being a crazy cat lady, reorganizing my closet for the 495,867th time.

I get out of bed everyday because I refuse to let my legacy be suicide.  I fall apart and shatter into a billion pieces and then Matt and I pick up the pieces and glue me back together.

This is my life.  I know it makes some people uncomfortable.  This is my story and it is my own.  It may not be everyone’s taste, but the key is to understand it is Amanda’s story – with a little Meniere’s Disease.  Not the other way around.

MW