...White Matter/Part III...Diary of a Type A

ENTRY #5 
Oct. 1, 2017

Bummed at how my forehead feels -
The pressure -
Makes me want to close my eyes -
Driving to CT
To go through more boxes
Of my mom's project on farmers' interviews
To give to UConn.
Hopefully they'll give it to the Dodd Center and Oral History there -
So that people have access to it.

Full time job
Assisting with a fifth grade class
Contributing to the way my head feels...
Have to talk lots each day...
With many tasks that are visual
And cognitive
Throughout each day.
Giving it my best.
Hoping it works out.
Need to have this job,
And not be trying to apply for disability.
Don't have the wear-with-all to do that,
Too.
Enough to get on board
With a new job -
After all that it took to get it...
Two years.
But hard to make sense
Of the written material sometimes.
I just look at the papers.
Can't put it all together
Like I used to before the onset of Lyme.
I have to break things down
Into simpler parts of the whole...
As with the many sheets
Of grammar lesson plans and activities.
Some of the process on the sheets
Were going vertical -
Some horizontal.
All very hard to process at times -
And not at the speed that I used to...
But then there are the bursts
Of being more than able...

Did I write about Visual Agnosia?
Very difficult to make sense
Of any mound of clutter of any type...
And identify an item in it.
Can't see it.
Can't find it.
Not being able to find a flashlight
On a counter top,
Or a cash drawer
On top of a desk,
Or a box of honey labels
Under a counter -
When there was so much other clutter around the object -
So much other stuff to process.

Spoke with the fifth grade teacher
That I assisted two days ago -
Felt like I was 'coming out' about Lyme,  -
(As a well known author did
In CA,
Where she had been hesitant to do so
Because of the stigma
Of hypochondria
That she said goes along with
The life style of so many urban Californians.)
I told the teacher that I'm still very capable,
But have problems
With my vision and focus,
And headaches -
Can be upsetting.
Mentioned the tendency to 'ocular' migraines,
But finding comfort
In what I know about music
With stroke patients,
And making new connections
Around damaged areas of the brain,
And learning 'en pasant'
And 'castling' this past summer.
She was supportive
And said she was glad that I told her.
Didn't mention the sensitivity to light and sound...
Hasn't been a big issue -
But plugged my ears
Along with a couple of the kids
At a recent fire drill. :)

On the ride to CT
Thinking about how difficult it is
To listen to most music now -
High pitches,
Low pitches,
Fast music,
Complex arrangements,..
And music was
(is?)
Part and parcel to my life -
Who I am as a musician,
Singer,
And career as a music therapist.
Now on the New Normal,
As I'd written about earlier.
Drive to CT in silence
After trying to listen to a CD -
And likely will again
On the way home.

DIARY OF A TYPE A
A 'Type A' personality
Is on the go,
And driven
To get things done.
A Type A personality
Can multi-task indefinitely.
Multi-tasking does exist.
(The widely discussed study
That showed that people can't multi-task
Wasn't actually measuring multi-tasking,
Because the results discussed
How people can't be be focused
On more than one thing at a time.
So the study was addressing multi-focus.
A study on multi-tasking would,
I propose:
-Look at a given number of tasks,
-And see how long it takes
-To complete them
-In a given period of time.
Simple.
I used to be pretty good at that -
One of the best, perhaps. :)
Not so much now.
But there are times...
When I forget that my head is in a 'bubble' -
In a bit of the ever present fog -
And just do or try to do
What was my Old Normal.
Sometimes it works.
Other times my body
And brain
Call out to me
To please stop,
And settle into the New Normal
I've already written about in detail.
But it's hard to do
After more than five decades of living this way.

(From journal writings of March, 2017 
20 months after the onset of Lyme:)

March 2, 2017

~Part of the New Normal
Includes awareness of a daily ‘threshold’:
If I’m not careful
Of my diet,
Physical activity,
Influence of stressors,
And influence of sensory input (light and sound),
I will likely extend past a threshold that is comfortable
And will need to lie down.
It means more than being ‘uncomfortable’;
It means being non-functioning, unproductive, and unavailable.

To help achieve a daily health
And quality of life
That allows me to participate
As an employee,
Parent,
Partner,
Friend a
And community member,
I ….
(that's where I left it in March... guess I'm still working on it.)

~New experiences,
Particularly those
That have something familiar about them,
Have been helpful
In making new connections.
For example,
I substituted as a teacher
This past week
For a special education teacher –
And had to return
To math concepts
I haven’t used in 40 years.
I remind the students that it takes repetition –
At least six times to learn something new…

Other challenges
Are now including
The learning of many, many new students
And their names
Each week.
This is making new connections in my brain –
Circumventing the damaged areas:
The ‘white spots’?
One class team, of two classrooms
Had three Aidens,
Two Caydens,
A Leah,
An Eleana,
A Callie,
A Caylegh,
Two Thomas’….
Seriously.
And they weren’t all spelled the same.
And I was just there for the day.
Seriously?

~It seems that my health is on a good plateau
These past two weeks,
Considering:
‘Subbing’ 4-5 days each week-
(Some of these are ‘half-days’),
Extensive office work-
(Taxes,
Financial aid,
Bills
And budgeting),
And child care.

I’ve had vitamin D3 and zinc 
(have since found that this might contribute to cold metallic feeling in my head, etc.)
Almost daily,
Probiotics occasionally,
Minimal alcohol and sweets,
Classes at the gym three days each week,
Avert my eyes from bright lights,
Maintain a quieter speaking voice,
Take a few minutes at least
Each day
To just breathe
And sit quietly,
And cook vegetables for myself whenever possible –
Even when family won’t necessarily eat them. 

What is essential for me,
And perhaps could help others,
Is a daily/weekly regimen
Of physical activity,
Relaxation, 
Supplements
(applicable to my health needs),
A balanced diet,
Mental tasks
And environments
That are not overwhelming
With sights and sounds.

I met a a classroom aide yesterday
Who spoke of her husband,
Who’d had Lyme,
And who also was sensitive to light and sound,
And was having troubles with his memory.

~So glad to have a morning off
That had been scheduled as a substitute.
Was scheduled all week…
With something each evening.
Losing my voice by yesterday, Wednesday,
After a day with a first grade class,
And had to lead a tone chimes rehearsal last night. 
Just being quiet now…..
Doing office work….
Will lie down before the pm ‘shift’ with kindergarten….
And a gardens meeting tonight…
Tomorrow subbing with 7^th and 8^th grade band all day….
ommmmmmmm.

My back needs cupping.
The asthma is kicking in again –
Too much phlegm that I’m trying to cough up –
Takes my head hurt…..
Drinking Breathe Easy
And Throat Comfort teas…
And taking True Calm ,
Zinc
And vitamin D3 –
And generic over-the-counter painkillers a bit –
Usually just one – and not regularly.

******************************************************************************

~Soooooo….
Not even sure how to write this:
It reflects where my brain is ‘at’,
And why I cannot
Have anyone interrupt me
When I’m trying to reconcile accounts,
And do any kind of finances, or even writing….
oy:

It just took me a final hour, plus,
To 
Again 
Go through my work site ledger,
And the checks received from the two districts
(One has recently gone to online payments)….
Breaking down each district
To the different schools
And dates
And classrooms,
And whether full or half day assignments,
And the amounts and the check numbers and the check date and the period ending dates….

I thought I was missing a paycheck…
And had been into one of the district office managers….
She was very patient with me.
I cross-referenced with my check register,
And thought I’d finally found the missing deposit….
BUT, the bank statement then had the amount checked off
(by me!)
And when I went back to the check register,
It was indeed there.
Omg.
It doesn’t help
That I’m filling in credits and debits
In very small spaces –
Sometimes two to a space
That should only have one.
And it doesn’t help
That one of the districts
Doesn’t note which schools each of the line items applies to.
And it doesn’t help
That a couple of the invoices for that same district
Were submitted after the applicable time frame –
(Once, because I hadn’t submitted it,
And once, because the school hadn’t submitted it. )
And, of course, I can no longer multi task.
I have to do things    one      at        a       time……..
Particularly when it comes to things
Involving my vision,
And how my vision
Is connected to my thinking.

*******************************************************************************

I learned the ASL sign for
‘I’m toast’
In class two nights ago.

Lying down for an hour
Before subbing the afternoon with kindergartners.
Thank god/dess this morning was cancelled
At the other site.

Tomorrow is all day
With the 7^th and 8^th grade band….
I think I’ll be doin’ some low hummin’
(For my brain).

March 24, 2017

SOOOO sick….
Face planted myself
On the bathroom floor
In the middle of the night
When I got up to pee
And passed out from the toilet.
Glad I was already close to the floor.
Came to with Rob over me, talking quietly….
Been in bed all day.
Couldn’t really stand up without feeling faint.
It’s 4.
Did not go to the high school band…
Felt so badly cancelling…

Later, tried to get up
And take a shower
To go to work at the farm…
But the shock of the water…
Which couldn’t get hot enough
After warming up the house at 5 (on a timer).
It was all I could do
To keep from passing out
As I tried to turn it off,
Find a towel
Through the curtains,
Wrap myself
And make my way through the curtains
And get to the bed…
Still wet,
Naked….
oy.  But did not faint…. 

******************************************************************************

I eventually went through my datebook:
Crossed off many nights
And some days –
All the way into August.
Definitely exceeded my threshold this week –
Four nights out:
(Airport,
Class,
Rehearsal,
Meeting),
And four scheduled days of subbing…
Can only do two nights out
And three to four days subbing (not four full days )

March 25 Saturday

oy ve. 

Spent two hours at the Urgent Care clinic this morning –
Being treated for pneumonia,
Exacerbated asthma
And a GI virus.
Had to contact church folks today,
Cause I can’t be there tomorrow
To direct to the tone chimes for the Prelude.
Bummer.
I hate cancelling something I’m committed to – i
It involves the time and energy of other people, too.
But need to see if I can be up for working my two sites Monday, etc.
And we can use that song for the Easter service –
Means one less evening rehearsal in April.
And Rob will still bring our peacock's feathers
For the Blessing of the Animals theme of the service.

My mouth tastes funny.
Milk tastes funny.
Sweet Dreams tea tastes funny.
And my head is buzzing.

Just stood in a hot shower…
Thinking about how Rob
Is stepping up to the plate a little bit.
It takes me passing out to do that?
Like the husband of the woman
Who gets seizures
That I'd read about?

I mean,
I've been seriously considering that I grow old on my own –
(But with my community).
Because, for some inexplicable reason,
Women aren’t allowed to get sick.
Women are supposed to be the omniscient
Ever present nurturers.
Without pay.
This is the less tangible
And more subtle sexism
That has continued to be woven
Into the fabric
Of our 21^st century culture.
Of course there are exceptions.
But they are not the norm.
Not even today.
As ‘modern’ as we are.

************************************************************************

Until next time -
When it's Back To The Beginning,

Peace and good health to you and yours...
Lisa