Karen’s Story

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.



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





Layers of thick black gloom

Curtains of ebony doom

Full of dismal thought

And endless empty rooms.


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.





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.


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.


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