Karen’s Story
I have been struggling with ME/CFS, FMS and MCS, along with associated problems for at least twenty years. In fact, the real beginning may have been two decades before!
During my twenties, I struggled with on-going health problems that seemed to defy diagnosis. Often, after working only two days, I would spend the next two days in bed. Eventually, after a couple of surgeries, I had some improvement and the next ten years were better. I did still have frequent infections and gastro-intestinal problems as well as unexplained long-lasting fevers. However, it was still a real shock to me when I found myself flat on my back in my early forties, unable to work and some days unable to even perform the most basic acts of daily living. It took many months of research even to find the medical diagnosis, and then five more years to find a physician who could help me.
The last twenty years have been full of struggles and disappointments, disillusionment with the medical system, and extensive costs to myself – financially, socially, physically, mentally, and emotionally.
T.I.R.E.D.
Tired,
I’m so tired
Of being tired.
Tired of sleeping
Tired of waking
Tired of laying down
Tired of walking
Tired of reading
Tired of eating
Tired of thinking
Tired of dreaming
Tired of trying
Tired of confusion
Tired of talking
Tired of crying
Tired of anger
Tired of guilt
Tired of making goals
Tired of never getting there
Tired of fighting
Tired of voices
Tired of sitting
Tired of nightmares
Tired of the past
Tired of the present
Tired, too tired, to see a future
Tired, very tired, of this life.
I was blessed to find a physician in Calgary, Alberta, Dr. T, whose practice specializes in ME/CFS, FMS and MCS. I have been even more blessed that she has stuck with me for the past 14 years as my health continued to spiral downward for some years and then, finally, has begun to show improvements.
It has been a long hard struggle to learn how to manage my illness, especially as my chemical sensitivities preclude the use of most medications. Over time I have become better at working on diet, rest/activity, balance, and sleep problems. I have been able to do that through establishment of habits and routines as well as listening to my body. It took eight years and a lot of intravenous fluid and oxygen but over the last several years my system learned to maintain blood pressure so I can be up more. I moved to a lower altitude and less polluted environment, even though it meant leaving behind friends and family but this paid great dividends.
From the Pit
Dark
Damp
Dirty
Deep
Layers of thick black gloom
Curtains of ebony doom
Full of dismal thought
And endless empty rooms.
Light
Tiny sliver
Teeniest ray
A hand reaches in
A whisper touches
A breeze disturbs
A foot steps up.
Slope is steep
Feet pulled down
Thoughts pulled up
Another step
Another voice
Another hand.
Reach
Listen
Feel
Try
Slow, so slow.
But always up
Keep moving
Keep reaching
Keep trying
Go up
Eyes on the light.
The road to recovery is still very long. However, I have begun to change my viewpoint about this experience. More and more, I realize that I have been given a great opportunity. I have a second chance. Everything in my life was totally changed by my illnesses. The things I did before, and the person I was before, are no longer possible. Today, I am a person on the road to “becoming”. Just as a newborn babe follows a route to somewhere, so too do I. But I have the advantage of starting as an adult. I do the choosing of direction. I mold myself and my characteristics. I choose the speed. What a great gift I have been given – a second chance!
The Journey
In every hello is the seed of Good-bye.
Birth is the beginning of death.
Starting is the beginning of finishing.
Coming is the beginning of going.
Loving is the beginning of hating.
Happy is the beginning of sad.
Plenty is the beginning of scarcity.
Winter is the beginning of summer.
In a handshake, hands grasp and let go.
So every meeting is the beginning of a parting.
Hello is the beginning of good-bye.
An ending is a beginning.
Enjoy the journey.
NOTE FROM KAREN:
June 18, 2014
Thanks, Lydia, for all the typing and proof-reading. I’ve ‘penned’ in any corrections I saw. I had forgotten about sending this, but it came back at a time I needed encouragement. Thank you.
Karen
