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by Eunice Beck, RN
February 13, 2002
Dear Friends,
I feel like writing this column is a privilege and an honor. I would like to thank Immunesupport.com for the opportunity to serve my community, and to get to know all of you.
All the other things I have learned and gained while writing have been a bonus. When I started writing for ImmuneSupport.com, I was not sure what I would say. Talking with friends, I am usually able to hold up my part of the conversation without any difficulty, and sometimes ‘hog’ time from others. I was not sure how able I would be to do this in writing. As I got started, I found writing these columns is much like talking to friends. As I began to explore my adjustments to my disease, I found plenty to write about. I also discovered things about myself of which I was unaware.
In the past I have been encouraged to write about how I was feeling, or things that were problems for me, but I was never very good at following this advice. I found that “writing for others” gave me the opportunity to do exactly that without feeling the self consciousness of writing about myself. I have been able, with you, to delve into the experiences of high stress situations, retirement, disability battles and many of the other things this disease makes a part of our lives. While writing about my experiences, I have also had the chance to explore the feelings more completely.
When I first left work, I dealt with a lot of guilt, and negativity toward myself. I had to convince myself that the disease was truly bad enough that I was unable to work. To do this, I forced myself to keep a daily symptom journal for several months. I had read about how helpful this can be in assisting your doctor with proper diagnosis and treatment. It can also be invaluable in your disability battles, especially with Social Security. For me, it had a more important purpose. It provided me with proof on a daily basis that I was too sick to work. It helped me delete the word “lazy” from my vocabulary. It let me recognize the fatigue and pain levels, as well as the frustration and irritability of dealing with these things every day.
While I’m not suggesting that we keep such diaries on a continuous basis, they can be a positive for our mental health in the beginning. It can also be helpful to do this if you are having symptom changes, or when you change medications, in order to present an accurate report to your doctor.
But I do think that keeping a journal can be a very positive thing. Simply by having a journal or diary, we are reminded to record our lives. Writing these columns has been a sort of journal for me. It has helped me investigate subjects I would not have thought about otherwise. It has helped me to see that there are accomplishments and successes in my life, despite the disease.
Journaling can also help you to identify those things which may be triggers for you, whether it is stress, chemical or noise exposure, or overdoing when you have good days. If you can identify triggers, they are more easily avoided. Writing may also help you find things which help you feel better. If you find a way to handle a particular situation or problem which makes your life easier, you will not have to fight “brain fog” the next time you have to confront something similar if you have written about it in your journal.
I have a dear friend who has kept a journal for years simply because she finds life so exciting and challenging that she does not want to forget a single detail. She has recently been sharing some of her observations with me via email. Her descriptions are so vibrant and beautiful that I feel as if I have experienced the situation with her. I have been encouraging her to compile parts of her journal for publication. Sadly, I think she doesn’t believe she can write anything that would be of interest to others.
I felt much the same way before I started writing for you. I didn’t think anyone would be interested in what I had to say or how I said it. I have been surprised and gratified by your responses.
Whether you write for yourself, as most of us will, or for others, keeping a journal is a worthwhile occupation for anyone. I believe it can be especially rewarding for us. Journaling can help us contemplate our relationships with our families and the world, as well as our disease. It is important to validate our successes and worth for ourselves. We are more than our disease.
Your journal need not be an actual diary. Perhaps it would be easier for you to keep it on your computer. A file in your word processor is easily accessible when you want to “jot down” a few thoughts. Whether you keep a pen and paper journal, or an electronic one, I think you will see the value in a fairly short time.
Like the teenage girl who can tell her diary “anything,” a journal gives you a place to express the negatives in your life as well as the positives. Writing about what is happening to you may well give you solutions how best to handle a particular symptom or situation. It will also provide a place to “put” all the anger and frustration we feel at the changes in our lives, changes we didn’t ask for and don’t want. Perhaps by expressing the feelings about these changes, we will be better able to cope with them in our lives.
Your journal will also give you a place to celebrate the positives. For those of us facing the challenges of CFIDS/FM, any success should be applauded. Take care and be well.
Yours in Health,
Eunice
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I welcome your comments and questions at: copingcorner@prohealthinc.com. My
articles and email responses are not being offered as those of a health care
provider. The information and opinions included are intended to give you
some information about your disease. It is very important that you empower
yourself with knowledge and participate in your own search for care. Any
advice given is not intended to take the place of advice of your physician
or mental health care provider. Always follow your physician's advice, even
if contradicted by something written here. You and your physician know your
situation far better than I do. Thank you and be well.
Eunice
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