I have a book review for you. To my mind, this is a “must read”. Although Cee has been ill for nearly thirty years, we’ve only had a name to put to her illness for the last few years. For all the time before that, we were just wandering with this black cloud over us, threatening to come and strike Cee down without warning or reason. For the last three years, we’ve been teaching ourselves how to come to terms and live with her illness.
I’m glad to be guest blogging for Cee today. Sometimes I think it’s nice to hear things from the point of view of the caregiver / companion of the person who is chronically ill. So it’s my turn to write.
We’ve had to monitor her energy levels, plan ahead for any activity, and say no to a lot of invitations, often at the last minute. Chronic illness not only zaps you of your energy, but it also wrecks havoc on your job, your friends, your social life, your spiritual life and your marriage. It can destroy everything you hold dear if you don’t learn to manage all aspects of your illness.
We fumbled through, searched for support groups, trying to find others who could guide us. There weren’t any support groups to be found. We thought of forming one, but with chronic illness you don’t have the strength or the energy. You have a lot of time, but not much else. I’m busy earning a living for both of us, and then I have to run the errands and do the chores around the house as well, so creating a support group was out of the question.
So where do you get the help you need to understand what is happening to your life? I finally found a book that I wish we had three years ago, when Cee first received a diagnosis. If we had known then what we know now from reading this book, we would have saved ourselves a lot of heartache.
In “You Don’t LOOK Sick; Living Well with Invisible Chronic Illness”, by Joy Selek describes her journey with chronic illness, writing her stories so that all of us can find a common link and benefit from her experiences. She co-authors the book with her rheumatologist, Dr. Steven Overman, who contributes his own experiences and knowledge. Together, they create a practical and human guide to living well despite your illness.
Over the months to come, we’re going to be telling our own stories of Cee’s illness, from both our perspectives. So look for many interesting blogs coming up. Send us your questions or stories, too. We’d love to hear from you.
Blessings and hugs!