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When I graduated from college, I thought my days as a student were ended. I learned how erroneous that assumption was as my life changed, first as a new nurse, then as a new parent, and now as a reluctant member of the Chronic Illness Club. It seems that life has a never-ending curriculum. And yes, there is always a test. It will be interesting to see what grade I will earn on the final.
In all honesty, membership in this new club stinks. It has, however, forced me to continue my role as a student, and as always, I am most successful as a student when I do my homework. I found an impressive number of great books to add to my required reading list.
Joy Selak and Dr. Steven S. Overman, in their book, You Don't Look Sick! Living Well with Invisible Chronic Illness, lists several strategies for life students dealing with chronic illness. They title them as the "Top Ten List for Living Well, Even While Sick":
1. Put yourself first.2. Never, never, never give up.3. Know who you are now, and let others know who you are now.4. Enroll in the School of Whatever Works.5. Make friends with fatigue.6. Live as a child.7. Step out of the box.8. Search for silver linings.9. Find a way to share your gifts.10. Avoid any medicine that will make you fat.
My favorite item on the list is number four - Enroll in the School of Whatever Works.
I love this idea, but it has taken me awhile to transition from appreciating this concept, to actually putting it into place. Change is hard. Even if the change results in a decrease in fatigue, it requires expending a certain amount of energy to discard old expectations and behaviors in order to learn the new. Living with a chronic disease forces one to look at all aspects of one's life in a whole new light.
I enrolled in this school kicking and screaming and feeling pretty sorry for myself.
Early on in this process, it seemed that all of the adjustments that I had to make following my diagnosis involved lowering my expectations. Expectations for my quality of life, my income, my ability to contribute to my family and community. This perception, while not entirely incorrect, was an underestimate of my abilities and future.
This school taught me that there were still an enormous amount of opportunities out there for me to make things work.
I did have to quit my previous job. But, with the increased amount of free time, I was able to begin volunteering for a few hours per week in a church ministry which allowed me to continue to use my education as a nurse. It worked.
I learned that being engaged in my family members' lives wasn't limited by my energy levels. What worked for me was using cell phones and computers to keep connected when I couldn't be there in person.
Knit pants, air dried hairstyles, sunscreen, and moisturizers took the place of work clothing, hair dryers and makeup.
Expectations for a spotless home and elaborate meals went by the wayside. In all honesty, this one was easy to let go.....and it worked.
The School of Whatever Works has indeed taught me several important lessons, and the most important of these is this: I can make a difference. I can enjoy my life, I can continue to be involved in the lives of my husband and kids, and even though my impact will not be made in the same manner as previously, I still have a useful place in this world.
I'll bet there are many more semesters ahead for all of us.
Top Ten List from: Joy H. Selak and Steven S. Overman, MD, MPH. You Don't Look Sick! Living Well With Invisible Chronic Illness, 2005, pg.85.