Divided me...

Last week in counseling, I was so distracted by the shirt my counselor wore that I could barely concentrate.  Eventually, I interrupted her to blurt out how bold and powerful she looked in that shirt, suggesting that if she were teaching a workshop or something, it was most certainly the shirt she should wear.

I go round and round with what was the "first symptom" of dysautonomia.  I know when I started fainting and started trying to get help for that, but I keep landing on other symptoms of NCS that have been around before that search.

I was sent to a cardiologist at the beginning of that period, and it occurred to me today that had I been treated differently, I might have gotten help sooner.  The first test ordered was an echocardiogram.  If you have never had one, whilst you can wear a gown, you are very, very, very exposed as the tech holds a sonogram wand over your heart.  I asked for, ahead of time, a female technician.  The day I arrived, there was only a male technician.  He walked into my room and I refused the test.  I asked, again, for a female technician, and was told that I apparently did not have a problem with my heart if my chief concern was the gender of my technician.

It was three years before I went back to a cardiologist.
Three years of fainting.

Having this thing happen to my brain wherein I become so distracted with a thought that all else falls away still, to this day, confounds me ... and shames me.  I once worked with a residential program coordinator whose eyes were so beautifully blue that I struggled to ever conduct a lucid meeting with her.  I think I would have been better off if I, like I did with my counselor, just stopped and told her that I found her eyes beautiful.  But I think that is weird.  Why were they so distracting?  Why the shirt?

A while later, in that same counseling appointment, pre-syncope washed over me.  Translate that, I almost fainted.  I know I vocalized what I felt with some words, but I do this thing where I try to push through with the conversation, no matter where I am.  I try to shove what's happening to my body to the background.  There I was talking when all I wanted was to be on the ground.  What would she think if I just laid down?

I stayed in the chair, despite being fairly certain that my counselor would not be one of those folk who become extremely disconcerted with my lying on the floor.

I found out that Dysautonomia International has medical accommodation cards for the different types of dysautonomia.  When I saw this card, I wanted one immediately, printed in color and laminated.  I saw it and thought that when I sit or lie on the floor in public, I could just hold it out to all the folk who seem so insistent that I get up off the floor.

The floor is my safe place.  Why don't people understand that?  Accept that?

Over the past few months, I have started fainting whilst sitting or lying down.  That's a "new normal" for me.  SIGH.  It is hard to feel safe when lying down doesn't keep you from fainting.

Basically, what I am trying to write about is the Divided Me.  The Me who ever so often has one part of her present in the exchange with someone and the other part of her trying to hold her body together long enough to finish her social interaction.  This happens most when I am standing, knowing there is a finite amount of time that I can stand.  From the first couple of minutes, no matter how much I am leaning against something, clutching my cain, or even draped myself on something, when the pain in my leg beings, I start calculating just how much longer I will be upright.  When talking, you generally do not move. Not moving means the effort of remaining upright is concentrated on few muscles ... that is to say the burden of standing is not borne as widely as it could be.

Gosh, how I hate checking in at medical appointments.  I seriously BOGGLES MY MIND that they do not have chairs and lowered counters for those who need accommodation.  Of course, this is far more difficult for me having had to walk from my car to that desk.  It is a far, far walk at the Integrative Medicine Specialist's office.  So far, sometimes I despair a bit just looking at the front of the building from my parking space.

But Divided Me happens all the blooming time, not just trying to stand and converse.  Divided Me is battling the work of holding a conversation with battling one or more of the following:

• Dizziness
• Flushing
• Nausea
• Abdominal Pain
• Blue feet (cold and painful from Raynaud's)
• Reduced or blurred vision
• Chest pain
• Palpitations
• Headache
• Migraine
• Cold spells
• Drop in blood pressure
• Poor concentration
• Word access
• Ringing in my ears
• Exhaustion
• Blood pooling in my legs
• Pre-syncope
• Weakness
• Anxiety
• Shortness of breath
• Roiling innards
• Heat intolerance
• Balance
• Hollow legs
• Sensory overload
• Blood sugar drops

There was that birthday dinner that I tried to hold for myself a couple of years ago.  I worked so hard to have a lovely meal and a social interaction, but during dinner, stool began pressing on my vagus nerve.  I tried to hold myself together, but soon ended up sliding from my chair to lie on the dining room floor.  My guests were appalled, but I finally managed to get them to leave since I knew I was going to be on the floor for a long while.  Maybe ... maybe if they were someone else, I would have asked them to join me, to sit (or even lie) with me in misery.  But ... really ... who would do that?

Anyway, during that dinner, once the nausea and dizziness began, I stopped following the conversation at the table.  I tried.  Part of me did, at least.  The other part of me was busy calculating just how long it would be before I couldn't remain in my chair even if I wanted to.  I was fully engaged in Pretending Mode and only partially engaged in dinner.  Then, I was not engaged at all.

In thinking about Divided Me, I realize that, for the most part, I wish folk would go into interactions with me as if I have dementia.  That way, I think, folk wouldn't expect me to follow everything or to always be engaged.  To always be present.  I want them to understand, to remember that often I am only half there, the other steadfastly trying (and of failing) to ignore the ailments of my body.  To remember would keep them from always expecting comprehension.  Or response.  That way, I can still have interactions but also remain free to try to hold onto the pieces of me.

Though, to be fair, I have no clue how that could be, how such an interaction would go.  All I do know is that Divided Me is here to stay.  SIGH.