I can never forget

Round and round I go
running from an unseen foe

A dark shadow threatening to shallow me.
I try so hard to stay free,

but everywhere I be
that shadow runs with me.

If I look I can see,
that shadow is a part of me.

One that will never leave on its own,
for it is part like skin and bone.

I must accept that I am never alone.
It always is my shadow and me.


This poem I wrote expresses my frustration that smacked me in the face again tonight.   When you are disabled it seems that middle ground disappears.  It is like balancing on a huge crack that an earthquake has opened in the ground beneath your feet.

I have spend years dealing with various medical conditions.  The last 12 having been struggling with increasingly frequent and severe pain.  I worked for 30 years before I left the work field for disabilty.  Before I left I spent a year and a half saying "no way" to my doctors who suggested going on disability.  I was brought up with a strong work ethic.  I saw myself in my younger years as working to my 70s.  As my conditions worsened I finally had to admit that I couldn't continue to work productively and manage my conditions.  Working was putting more demand on my body and mind than I could manage.  So I began the 18 month trip to get my social security disability.  It was a horrible journey.  I had to fight all the way.  I felt like I was being condemmed a liar and lazy by goverment standards.  Finally I won my case.  To this day I have never read what the judge based his decison on.  I know that my illnesses can put me in a horrible dark place.  I can do things I am not proud of and do not wish to feel the need to do again.  I fear reading the judge's comments would be too painful.

I manage fairly well in my daily struggle with pain and depression on disability.  I know that gainful employment is well beyond my capacities anymore.  It was and still is a very difficult thing to accept.

Tonight I experienced total frustration for how my life has become.  Often I get the sense that others look at me and think "but you don't look sick".  Sometimes it seems people look at me like I have 3 heads when I try and explain my limitations.  No I am not wheelchair bound or visiable ill.  In fact I have had years of practice hiding my pain and fear until I couldn't anymore.  this is the common problem spoonies face from others. 
then there is the other side, like I dealt with tonight.  You had to be careful on disability.  The monsters from the goverment are just watching to trip you up and show that you are faking.  I volunteer 1 shift a week that is 6 hours long.  Of that time we get 1 or 2 calls at the most.  I may be out doing actual EMT stuff for 3 hours total.  I do not lift and have made that clear because of the arthitis in my neck, shoulders and upper back.  I do a shift during the day because I am physically tired by 9 pm.

I know people mean well, but I hate when i heard that I need to be careful or I will lose my social security.  What am I to do; sit home and wait to die!!!   may be I should do what I sometimes want to do and bury myself under the covers and not get out of bed.  I set a goal for each day.  I need a reason to get out of bed and stay out.  I hate that people either think that there is nothing wrong or I should act like I am dying.  I do not want to spend the last 25 or so years of my life that way.  I might as well lie down and die now.

My volunteer work saves my sanity.  I don't even do a week's worth of work in a month's time.  However it gives me a reason to feel that my life is worth something.  It took time for me to accept that what I do is as important as the full time work I did before. 

Also what really pisses me off is that I know enough about social security to know that you are allowed to work on a limited basis.  You also have a 9 month work trial period for your lifetime.  That means that if you go back to gainful employment you continue to receive your benefits as a safety net for a max of 9 months.  the amount is adjusted depending on your income.  It is set up that if say you go back to work and in 2 months find you can't continue.  Your benefits are still active.
One of the people who worries so is my brother in law who worked for the IRS/US immigration dept for years.  he should at least have a better understanding than others about SSD.

Sometimes I want to scream at people that I am disabled not dead!  I will not curl up and let life pass me by.
I tell myself "breath and relax".  I can't let others' ignorance tear me up.  I have to find balance in my life and they in theirs.

Thanks for listening to my venting.  Now I am going to do some gentle yoga.  BB and hugs.