The black dark
oily slithery monster
waiting for an
opportunity
to overwhelm
to drag me off
to the dark abyss
I have learned
from experience
how frighteningly
easy it is
to get sucked in
and how terrifyingly
difficult it is
to crawl out
So now when I
see you approaching
I try my darndest
to keep you away
using my weapons
of my loved ones
their warm hugs
keeping you at bay
I know you have help
with the jerk who is residing
uninvited in my body
Mr. Parkie
Both of you rub your
hands in glee
Thinking you can win
but I have grown
wiser to your tricks
So while you may get me
I refuse to drown
I will do whatever it takes
to find the light
so help me lord
Tuesday, December 2, 2014
Thursday, November 13, 2014
Life's lessons
As i
sit here in my comfy chair, my legs beating to a tune that only it
hears, the weird rhythm created by Parkinson's , which by now, ten
years later, controls my body,, mind and yes thoughts.
I do not want to identify myself with Parkinson's. I want to be just a regular 46 year old women going through my mid life crisis, worrying about my job or career, my kids, my hubby, my family.
But as they say, You make plans and then life happens... I mean it is hard enough to maintain relationships and raise kids, but with another twist or spoke in the wheel it gets very difficult. It did not help mattters that I was in denial desperately praying, hoping and wishing it was something else, something with a cure, something that i could get out off, desperately scouting the internet....meanwhile taking mind altering drugs.....while outwardly maintaining the facade of normalcy, I was in a hell that I could not share as there was no one who understood.
I was going through my honeymoon phase of Parkinson's which fueled my and others denial of the condition. I continued as before but pretty soon I had to accept the fact that my body was really deteriorating. So while my friends and peers were out making their career or making major decisions for their kids, here I was lost and bewildered and scared out of my mind and lonely. My husband was sill in denial and had work pressure, my friends heard me out, but it is impossible to express unless one goes through it.
Ten Years with this unwanted, uninvited guest in your body as I look back on these past ten years of my life defining moments I have realised that yes, I have had dark, challenging, frustrating days, days where i was ready to end it all ,...days when I have shed buckets of tears, so many "Why me's" and If onlys there have been some life lesson's learned, through all the hurt, the pain and challenges that comes with a chronic condition.
1) I have always been a pleaser....and I realised that one does not need another's approval to do something...you cannot please everyone.
2) It is ok to say NO
3) Don't sweat the small things.. Believe me life will throw you bigger curves.
4) Don't worry about what others think. After all they are not living your life
5) Health is Wealth
6) We freak out and worry ourselves endlessly about things we cannot control. Worry and take care of things that are in your control
7) Don't compare yourselves with others. Everyone's family and situations are unique to themselves. Do what works for your family.
8) This is a difficult one and one that I still have a problem with.....Guilt! Don't feel guilty if you are unable to do things that others do ( for e.g with me it is the fact that I cannot be the mom that my kids need, or the wife that my hubby needs or.......the list goes on)
9) Accept your strengths and limitations. Know yourself (very imp)
10) your attitude is in your control....positive or negative.... you choose
11) It really is up to you to be happy or sad, especially for things within your control. I understand there might be exceptions
12) It is very easy to curl up and say I cannot and difficult to get up and say I can, but you CAN do it.
13) It is so easy, sitting in our own live's to judge someone else's...Don't you have no idea what the truth is
14) Be kind to others. It does not cost a thing
15) You have a choice to laugh or cry....I choose laugh cos it is great for your facial muscles:))
Many more...but for now I leave it here....Now would I have come to these realisations if I did not have Parkinson's? That I don't know:) But this is what I have learned these past years while dealing with my condition. While none of them are rocket science or any out of this world lessons...this is what i realised were missing from my life:)
I do not want to identify myself with Parkinson's. I want to be just a regular 46 year old women going through my mid life crisis, worrying about my job or career, my kids, my hubby, my family.
But as they say, You make plans and then life happens... I mean it is hard enough to maintain relationships and raise kids, but with another twist or spoke in the wheel it gets very difficult. It did not help mattters that I was in denial desperately praying, hoping and wishing it was something else, something with a cure, something that i could get out off, desperately scouting the internet....meanwhile taking mind altering drugs.....while outwardly maintaining the facade of normalcy, I was in a hell that I could not share as there was no one who understood.
I was going through my honeymoon phase of Parkinson's which fueled my and others denial of the condition. I continued as before but pretty soon I had to accept the fact that my body was really deteriorating. So while my friends and peers were out making their career or making major decisions for their kids, here I was lost and bewildered and scared out of my mind and lonely. My husband was sill in denial and had work pressure, my friends heard me out, but it is impossible to express unless one goes through it.
Ten Years with this unwanted, uninvited guest in your body as I look back on these past ten years of my life defining moments I have realised that yes, I have had dark, challenging, frustrating days, days where i was ready to end it all ,...days when I have shed buckets of tears, so many "Why me's" and If onlys there have been some life lesson's learned, through all the hurt, the pain and challenges that comes with a chronic condition.
1) I have always been a pleaser....and I realised that one does not need another's approval to do something...you cannot please everyone.
2) It is ok to say NO
3) Don't sweat the small things.. Believe me life will throw you bigger curves.
4) Don't worry about what others think. After all they are not living your life
5) Health is Wealth
6) We freak out and worry ourselves endlessly about things we cannot control. Worry and take care of things that are in your control
7) Don't compare yourselves with others. Everyone's family and situations are unique to themselves. Do what works for your family.
8) This is a difficult one and one that I still have a problem with.....Guilt! Don't feel guilty if you are unable to do things that others do ( for e.g with me it is the fact that I cannot be the mom that my kids need, or the wife that my hubby needs or.......the list goes on)
9) Accept your strengths and limitations. Know yourself (very imp)
10) your attitude is in your control....positive or negative.... you choose
11) It really is up to you to be happy or sad, especially for things within your control. I understand there might be exceptions
12) It is very easy to curl up and say I cannot and difficult to get up and say I can, but you CAN do it.
13) It is so easy, sitting in our own live's to judge someone else's...Don't you have no idea what the truth is
14) Be kind to others. It does not cost a thing
15) You have a choice to laugh or cry....I choose laugh cos it is great for your facial muscles:))
Many more...but for now I leave it here....Now would I have come to these realisations if I did not have Parkinson's? That I don't know:) But this is what I have learned these past years while dealing with my condition. While none of them are rocket science or any out of this world lessons...this is what i realised were missing from my life:)
Wednesday, March 5, 2014
A moment in my life
Toes curled
Feet pulled inward
ssharp pain shooting
up my legs
my shins cramped
my legs tingle and harden
hard as a rock
pain fully stiff
Does not stop there
Onwards n upwards
fingers stiff n bent
yup both
forearms and upper arms
stiff as a board
shoulders harden,
neck locks up in pain
locked and frozen I
am in my body
Mind frantically
looking for an escape
but trapped
in the body
it tries in vain
a pill i swallow
promising relief
but careful i have to be
too much and it cud
go the other way
where i shake
but am still frozen
Aah yes the
joys of Parkie
Feet pulled inward
ssharp pain shooting
up my legs
my shins cramped
my legs tingle and harden
hard as a rock
pain fully stiff
Does not stop there
Onwards n upwards
fingers stiff n bent
yup both
forearms and upper arms
stiff as a board
shoulders harden,
neck locks up in pain
locked and frozen I
am in my body
Mind frantically
looking for an escape
but trapped
in the body
it tries in vain
a pill i swallow
promising relief
but careful i have to be
too much and it cud
go the other way
where i shake
but am still frozen
Aah yes the
joys of Parkie
Friday, February 21, 2014
Dear Parkie
I would like to start off by saying that you are one of the most rude, obnoxious, shameless and stubborn thing i have come across. First of all without a "May I, please?" you go ahead and enter my body and slowly but surely killed most of my dopamine cells. I mean, how very rude is that? You know very well how important those are for me.
It is bad enough you come in uninvited, but then you proceed to shake things up....first my left side, then my right side and now u greedy jerk, u jerk my whole body around. You are cunning and take your time but boy do u devastate.....For a long time you damage the inside, disabling, demeaning, demoralising, and others have no idea why......before u start to show urself to others. You may not be a death sentence but u are definitely a life sentence.
And you know you don't just trouble me but because of u my kids, my beautiful boys, my hubby and all my extended family n friends are affected....though as u progressed further and got more complicated, i did find out who my true friends are.
People, most of them, think you are all about tremors, but we know differently, don't we. They have no idea about the damage u can inflict.
To get you to calm down I even had holes drilled into my head, but....not much change, at least for me.
I have a favor to ask..... I know you have settled in long term, but can you take me back about 5 to 6 years. Even though life was not perfect, it was much better that it is today.
Do u comprehend?
It is bad enough you come in uninvited, but then you proceed to shake things up....first my left side, then my right side and now u greedy jerk, u jerk my whole body around. You are cunning and take your time but boy do u devastate.....For a long time you damage the inside, disabling, demeaning, demoralising, and others have no idea why......before u start to show urself to others. You may not be a death sentence but u are definitely a life sentence.
And you know you don't just trouble me but because of u my kids, my beautiful boys, my hubby and all my extended family n friends are affected....though as u progressed further and got more complicated, i did find out who my true friends are.
People, most of them, think you are all about tremors, but we know differently, don't we. They have no idea about the damage u can inflict.
To get you to calm down I even had holes drilled into my head, but....not much change, at least for me.
I have a favor to ask..... I know you have settled in long term, but can you take me back about 5 to 6 years. Even though life was not perfect, it was much better that it is today.
Do u comprehend?
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