Mark your calendars it's a date!
Appointment books, calendars
and
notebooks keep my life on tract.
Doctor appointment: check calendar!
Notebook: remember to call ….
Spend the day with family: check calendar!
Notebook: ask doctor about….
Clean house: check calendar!
Notebook: things to discuss with hubby….
Grocery shop: check calendar!
Notebook: Nanny don’t forget….
Date with hubby: check calendar!
Schedule. Scheduled! Scheduled?
Sometimes I feel like I should be covered in ink.
From all the notes I jot down
and the calendars I check off
just to keep my life organized
and my stress level easier to deal with.
Schedule. Schedule! Schedule?
I keep a notebook and calendar
on the counter at all times.
I feel like I should be a calendar girl!
Wouldn’t life be grand if you had a crystal ball?
You could tell the future.
Just think, you would know ahead of time
when days are going to be good or bad.
Then you could plan when you
want to be
SPONTANEOUS!
I miss being spontaneous the most.
I miss living.
I mean Living my life.
Ankylosing Spondylitis has
taken the spontaneity out of my life.
This disease has robbed me of many small freedoms,
that I used to take for granted.
The weight of this disease is unbearable at times.
I miss the freedom of grabbing the telephone.
Calling a friend and saying hey lets meet for lunch!
Ankylosing Spondylitis has to be picture perfect.
Before you are able to run out the door and have fun!
There are so many things we have to make sure of
that “normal” people have no clue about.
One of the things I can’t be
spontaneous about anymore is bath time!
I am not allowed (hubby’s rule of course)
to get in the tub UNLESS he is home!
Seems he has issues with me falling.
( We won’t go into how this rule was decided!)
Things I worry about
toes painted,
legs shaved,
hair washed,
and on and on.
THEN
and
only then
am I ready to be
SPONTANEOUS!
One thing I used to take for granted
was clean clothes.
No worry!
There were ALWAYS clean clothes.
Now it’s like world war three
between that washer and me!
Even if you are lucky enough
to have all the clothes washed.
Will you find something
you can be comfortable in
Today?
Clothes for me have become painful.
They feel like they weigh a hundred pounds.
They hurt my raw skin.
They hurt my hips.
Sometimes I struggle to breathe.
Pure torture.
Shoes?
We won’t even discuss that.
My style of shoes
are flip flops.
Heels hurt my back.
Tennis shoes can’t tie them.
Shoes hurt my feet.
Shoes hurt my heels.
So flip-flops
are my new best friend.
and I can’t stand them!
There are so many things
you have to consider
when you go out,
that never cross other people’s minds.
Every day outings are difficult.
Doctor appointments.
Running errands.
Grocery shopping.
Ankylosing Spondylitis causes even
the smallest of outings to
seem like a circus show!
It isn’t a life of simply grab
your keys and run out the door.
Takes planning, tools, and being prepared
before you can adventure out.
First you have to find out:
Where are you going?
Who is driving?
Are you able to
even get in the other person’s car?
Then you have to wonder about
how long it takes to get there.
Will there be difficulties in your route,
that place you in harm’s way
if you are driving.
Will you be able to ride comfortably
in their car or for that amount of time?
Something to worry about
when dealing with
Ankylosing Spondylitis
is how much pain
will you be in when you get there.
Then you have to
worry about parking.
Will you find a handicap space
or
one at a distance you can manage
after the difficult ride in the car.
People have no idea how far
a hundred feet can be
for someone who is in pain
every step of the way.
The biggest thing you have to consider
is the social outing it’s self.
Family gathering?
Day with the kids?
Movies?
Is it an activity you can even manage?
Are you in too much pain?
Are you coordinated enough to do it?
Physically able to?
Mentally willing to try?
Too fatigued?
So many questions surround every part of our day.
Living in Texas
our world consists of
Bar Be Ques
family picnics
anything outdoors.
That is the hardest for me.
The heat is difficult for me to deal with.
I worry about the
lawn chairs mostly.
Can I sit in it? Will I hurt sitting in it?
Will I be able to get out of it?
Will I look like fool?
Will there be a place I can sit comfortably and eat?
If there isn’t a table for me to sit at.
I will not eat.
I struggle eating food from a plate on my lap.
I don’t even bother, it’s too much of a hassle.
I’ve always loved picnics.
That is a dream of the past now.
I can’t get up and down off the ground.
I can’t get my legs to work to sit on the ground.
I am unable to sit without back support.
Life is no picnic for people with Ankylosing Spondylitis.
One of my biggest challenges with
social outings for me, beside the car issue,
is the type of seating I will have to deal with.
Movie theatre seats kill me.
I can’t lean back and watch, so I sit straight up.
Restaurants are difficult, booth or chair?
Large table or small table?
Friend’s gatherings are standing room
for me most of the time.
Ankylosing Spondylitis
has caused a lot of obstacles for me
when I leave my home.
Many times when I decline,
my family or friends
I feel like a witch,
because
I don’t have the energy
or I hurt to much to try.
Ankylosing Spondylitis
isolates us from the people in our lives
and from living our lives.
I spend a lot of my time alone.
On those wonderful occasions when everything is good, and I can mark off things on my mental checklist, and enjoy time with family
or friends or a special treat just for me.
Those are the days of my life that I treasure
and help me through difficult times.
I think people fail to realise
how difficult a simple task can be
for a person with Ankylosing Spondylitis.
How hard, painful and stressful
it can be for us to go on outings.
It takes a toll on us physically, and emotionally
and sometimes the price we pay is very steep.
Some days are so difficult and painful
you wonder why you got out of bed.
My new year’s resolution this year
was to be my own best friend,
to encourage my self to do more things,
to take better care of myself
but most of all to love myself enough
to remember I am worth the extra effort
that it takes to live my life.
To remember
every single outing
every single day
no matter if they’re
good or bad
is still a gift.
A gift I intend to enjoy to the best of my ability.
Success is never final. Failure is never fatal.
It is the courage to continue that matters most.
These beautiful calendar pin-up girls are the work of Gil Elvgren.
Calendar Girl By Neil Sedaka
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