once upon a time…

once upon a time
I was fearless

now I am fearful
and feel futile

“what happened?” one asks
Brain Damage…in a word?

Concussion

actually “accumulated brain damage
as a result of repeated concussions
and years of medical interference
due to large amounts of medications ongoing”

sounds intense eh?

it is…
and
it isn’t.

I’m still intelligent
and articulate
but I have issues brain-wise…

I was first diagnosed in 2015
and it’s taken me a long long time
to come to grips
with my current
limitations

I’ve lost a 40 yr career
as an administrator
because I no longer recognize
when my work is wrong

yet I’m calmer
than I have ever been
in my life

I no longer suffer from rages (nor do my friends and family)
but I’m sad and depressed a lot (big dark hole depressed)
and of course
have the added pressure
of several
autoimmune diseases

So I had this whole meltdown yesterday about my new G.I.
saying that my Crohn’s is mild and my upper G.I. is normal…

I had myself convinced that I’m a hypochondriac
and all of the symptoms are a figment of my imagination

My counselor talked me down….

so I’ve been doing some research on signs and symptoms of adrenal diseases
(because that is what the endo is researching on my behalf)
just about every symptom I have
except for the screaming trots in the morning’s
can be attributed to brain injury or adrenal diseases….

I am absolutely flabbergasted at how many of the symptoms
I have and have had for most of my life
can be attributed to brain injuries….
Holy shit Batman, it’s amazing to me that I got as far as I did.

one of the things
that is really hard to do
is to focus on today
to not spend a great deal of time
living in the past
or hoping for
grandiose things in the future…

And by grandiose I mean
getting back to what I perceive as normal
so what is important for me
to do is to live in the moment
and be happy with what I do have

it really is hard to narrow my focus to the now…
and not get caught up in movies and maybe if’s

I think I can honestly say that

I was type A for a long time in my life…
I sure as hell ain’t now lol

Which leads me to another statement
about the way, my brain works now…

I used to joke around
about having ADOS
(attention deficit oh shiny)
but when that occurred
I was always able to go back
to my original thoughts and plans
without losing anything in the translation…

There simply is no translation now.
if I start to do something and lose
for whatever reason, my train of thought
I often don’t go back to that train of thought
for days

which is why things don’t get accomplished the way I used to
there’s a futility that comes
with not understanding
that what you’ve done
for the majority of you life
easily
no longer works
how does one move on
at 63 almost 64 years of age?
I likely only have about a year
of work time left

so
what to do?

“would you like fries with that?”
looks ike it may be my only option

I keep applying for jobs
like I used to
proud of my accomplishments etc

but I’m overqualified
for everything retail
and have no experience
in that

I often have
days and days
where I get nothing accomplished
because of depression

so I’ve finally decided to apply
for disability
which brings with it
a whole new set of
inconsistencies

for instance
in this province
you are given $375 a month
for shelter…
in Victoria?
where a 1 room bachelor suite
is $1350
but they are telling me I have to move

it’s no wonder
so many people are homeless here

but still
I will strive
to find something

to make life liveable

once upon a time
I was fearless

now?

not so much

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Hot showers and clean bedding…

Seriously?

Is there anything that could possibly feel better when you’re sick then a hot shower, a clean night dress and a clean bed?  Unless it would be to still have your mom around …

I really do need a housekeeper…too bad I can’t afford one  lol

I’m not sick again, I’m still sick.

I’ve been sick my whole life. I was born this way…had my first surgery at 21 days old. The next person that suggests I should do something about my health and feeling better is going to get throat punched…oil of oregano will not fix everything…just saying.

I mean seriously? Do you not think that I haven’t tried every possible medium in an effort to feel better?  In spite of a brain injury I’m still relatively intelligent. This is not a ploy to get attention. This is the mind boggling, day to day drudgery of living with chronic disease/illness/pain.   Yes, there are millions of people in the world that are worse off than I am, that does not lessen my conditions or my reactions.

I can’t work in administration anymore because administration jobs are 9 to 5 or 8 to 4 and I spend anywhere from 2 to 6 hours every morning running between my bed; where I lay to try to keep from throwing up and the bathroom in an effort to not crap myself…cos that’s fun.

I am endeavouring to find myself some sort of job that I could work afternoons and early evenings because I also always completely run out of steam by 930 10 o’clock… It’s so easy for people to say “just get a job” or “you should go to work or there’s lots of jobs out there”. But for a person who has restrictions on the hours they can work, the type of work they can now do and the length of time they can stand on any given day… it ain’t a cakewalk.   So… while I don’t mind  suggestions please only suggestions that could lead to a positive outcome … losing your career at 63 years of age aint a cakewalk either.

I hope to be applying for disability… but that’s not a walk in the park either. They don’t offer enough money to actually live on so you have to have a part-time job and the process for application is anywhere from 3 to 5 months long …  how the hell are you supposed to afford food in the interim?

Oh…also…there’s no guarantee that in spite of having Crohn’s disease, diabetes, arthritis, depression, high blood pressure, and a brain injury (andnow also the possibility  of an adrenal disease ) that I will even qualify for disability.

Juggling doctors and counsellors and medical tests is a full-time job…one  that we don’t get paid for… unless of course they can make you feel better and so far that hasn’t worked but I’ll keep tryin.

… just don’t be silly enough to tell me I really should do something about my health.

 

 

 

 

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