Editor’s note: I first “met” Marilyn in Carol Sveilich’s amazing book of profiles titled “Just Fine – unmasking concealed chronic illness and pain.” I am indebted to Carol, and Marilyn, for sharing these stories, and lending their insights and support.
Marilyn Mason: Poet, Fibromyalgia and CFIDS Patient
I remember vividly my first days at home after having to discontinue my long career as an accountant.
I was in my kitchen turning around in circles wondering what to do next. I could hardly recall a time when I wasn’t working, or doing any number of a dozen things of interest that occupied my time. I loved to golf, hike, cycle, dance, travel, play piano, go to movies and plays, read, and of course shop. I kept up my house and yard, and raised three children, sometimes taking college courses at night. When I was a child, my father often said that he would give me a nickel if I could sit still for five minutes.
I do remember having bouts with pain and fatigue. I had a childhood illness, and was in a couple of accidents which slowed me down, but I always continued on. I had a lot of responsibilities, but also loved to have fun, so I ignored my pain, and of course, I was young.
I was experiencing more than a little stress at work, and began having frequent bouts with what seemed to be flu-like symptoms. I had traveled at lot that year, both for work and for pleasure, and after the last two trips I felt as though I was completely out of gas, and experiencing a lot of pain and anxiety.
I began the long day’s journey into the night of Doctor’s, blood tests, x-rays, misdiagnosis, and total frustration. No one had even heard of Fibromyalgia or Chronic Fatigue Syndrome (CFS) at that time. Finally I tested positive for the Epstein-Barr virus, and went on permanent disability. Eventually the diagnosis was changed to Fibromyalgia and CFS.
I have heard so many similar stories of people seeing numerous doctors and having months, and even years, of testing before they are finally properly diagnosed. Even now, there are many health professionals who treat these conditions with a lot of skepticism, and even with condescending attitudes.
Family and friends are mystified by the changes they see occurring with their loved one. It can take a toll on relationships, and put stress on marriages. Many people whom I have met (and including myself), spend a great deal of time at the beginning searching for answers to what has happened to us. We read all of the material we can find, surf the Internet, and reach inside of ourselves to see if we did something to create the problem. There seems to be a lot of guilt involved with these conditions; we feel as though we have let ourselves and everyone around us down. We are so used to being self-sufficient caretakers, and suddenly we can’t even take care of ourselves.
Thus my journey into another phase of my life began. Through all of the pain and the sorrow (yes, there is sorrow, almost like a death, because you have lost the person that you used to be), I have become a survivor. I believe that we have to go through all of the stages of grief, as in losing a loved one, before we can begin the inner healing process — and it is a process.
Fibromyalgia is so much more than muscle pain. Your entire being is affected. Whatever the process is, and there are many theories, your condition can change and your symptoms can be different from day-to-day, even from hour-to-hour. Sometimes these symptoms are very scary, even to the point of ending up in the emergency room, as they can mimic very serious conditions. Recognizing this fact can go a long way in learning to stay calm, and being able to analyze whether the problem at hand is serious or not.
The best thing that happened to me was that in my quest for answers I attended pain control classes, and joined a support group, and eventually a research group. The tools that I acquired there, and the life-long friends that I have made, and the support I have received from these friends, has changed my life. I learned that I had to redefine my life within the confines of what I am capable of doing. I have learned to pace myself, and to cope with this condition, not just live with it, but live a full and happy life. Over the years, with more time to reflect, I found that I had untapped talents, which I previously didn’t have time to pursue, and I have had the privilege to mentor people who are just beginning their journey into their chronic conditions.
I learned decorative painting, learned to play Bridge, and I made many new friends, who understand what I am going through. I began to write poetry, which led to having several pieces published, earning Publisher’s Choice awards. I’ve also learned how to spend quiet time alone, and enjoy my own company, which was a luxury when I was working. I have acquired many email pals, who entertain and inspire me, and this enables me to be in touch with my far-away friends and family, and expands the world that had closed in on me when I was first home-bound.
Recently I was diagnosed with coronary heart disease. I had five blockages, and went through several stent procedures. The tools that I learned while going through my other journey, and the friends I have made who have supported me, have made all of the difference in my recovery. These tools can be used in every area of life. My husband has been my greatest source of strength and support, he has been my angel. I realize that not everyone has this kind of support from their spouse. I would encourage you to have your spouse attend appointments, and support groups with you.
The moral to my story is: there is life to be lived after being diagnosed with any chronic illness. Try different things until you find something that is right for you, it may take a while, but keep trying. Get up every morning with a fresh attitude, get dressed, have a routine, even if it is just something simple. Sleep problems are a factor, so rest frequently during the day, that’s okay. Leave yourself open to new possibilities, and most of all, have hope.
I am sharing one of my poems with you. This one has been published. One of my goals for the future is to self-publish a book of poetry for my friends and family. Good luck on your journey!
By Marilyn L. Kish Mason
People collect the most curious things,
Such as thimbles and spoons, old toys and rings,
An assortment of dishes that are packed up in boxes,
With old stamps and rare coins and pocket watches.
There are buttons and bows and pictures galore,
Their house is soon full, but they keep buying more.
But where is the joy their possessions should bring,
When they fill up their lives with such trivial things?
I know a man, who boasts of no solid gold pens,
His contentment is found in gathering friends.
His worth is not measured by what he may own,
He gives of himself and will always be known,
As a man of kindness and deep affection,
And we are blessed to be part of his collection.
Copyright © 2002 Marilyn L. Kish Mason. All rights reserved.
For more information about “Just Fine – unmasking chronic illness and pain” by Carol Sveilich, MA, please visit http://www.immunesupport.com/shop/Books.cfm. Carol Sveilich’s website is found at http://www.writefaceforward.com/.