Welcome to the 16th edition of the Patients for a Moment (PFAM) blog carnival. This is my first time hosting PFAM and I really enjoyed the experience. Thanks to Duncan Cross for allowing me to pose this Valentine's Day inspired question:
Love? Hate? What are the four letter words you use to describe your life with chronic illness?I enjoyed reading all the submissions and found a whole range of four letter words that describe life with chronic illness. They include: real, help, much more, near and dear, full, work, care, muse, loss, miss, risk and defy.
In a post that is a true expression of love, Ashley of Lymenaide: living in Harmony with Lyme submitted a post written by her husband Sander about her struggles with Lyme disease. Ashely educates us that in her husband's native Australia, the term fair dinkum means real. This post touched my heart as Sander describes the real sacrifices he has made to help Ashely get on the road to recovery from Lyme disease. Read Lyme is a Fair Dinkum Disease.
Trudy of A New Beginning: My Life with RSD starts by talking about love, then gets to the heart of the matter. After being diagnosed with Reflex Sympathetic Dystrophy in 2005, Trudy needed a whole lot of help from her husband with just about everything when she lost the use of her hands. Her post illustrates what can happen when a marriage transforms from a husband and wife team to a patient and nurse relationship. Read Keeping Love Alive During Illness.
"The word pain just sounds so insignificant," Jolene of Graceful Agony: Living your best life despite chronic pain states. For something that impacts her life so completely, she thinks pain should be a word that is bigger, bolder and commands more respect and attention. Her post reminds all of us who live with chronic pain that pain is what we feel, not who we are. In her post she invites us all to get to know much more about who Jolene really is despite living with chronic pain. Read Pain is a 4 letter word.
NEAR & DEAR
Annie's blog title is both provocative and full of truth: It's Time To Get Over How Fragile You Are. Tired of life being dictated by her health problems, Annie endeavors to be proactive about really living. Annie shares with us a "beautiful lie" from her childhood and her discovery that chronic illness has brought her more love from the people that are near and dear to her than she ever thought she would have in her life. Read Love and Chronic Illness.
Laurie at A Chronic Dose ponders the roles of love and hate in her 29 year journey with chronic illnesses. On the one hand, she notes that time and acceptance have helped her not feel hatred when she thinks of the various losses linked to her health struggles. On the other, she admires how she has figured out how to build a life full of things she wants to do and how she fortifies it against the attempts of illness to take little pieces away from her. She realizes that living a full life means she doesn't have to hate her illnesses. Read Give and Take.
Take a trip through time with Lisa at the blog Brass and Ivory, brought to you by the four letter word work. Her post demonstrates how chronic illness can change the course of a life through its up and downs. Her definition of work has changed over time and, yes, managing health problems is work. Yet despite it all, she shows us how our desire to work--to shape, form and improve ourselves and proceed towards goals or along a path--still remains. Read Illness in One Word: WORK.
Enjoy a little Valentine's Day whimsy with a poem written by Dot at Fibro World. Like she says, living with fibromyalgia might be blue, but the support of all the people she cares about helps her get through. Read Fibro Valentine: Roses Are Red, Fibro Is Blue...
Sharon at After Gadget: Facing Life After the Loss of My Service Dog writes a loving and touching post about her life with her "hindrance dog." It seems that life with Gadget didn't start out very well, but after struggles and frustrations during training he transformed into a magnificent helper on which she came to rely. Though he is no longer with Sharon, the memories of their time together now bring her happiness and Gadget lives on as her blogging muse. Read Sick Humor Retro: The Hindrance Dog.
Living with illness brings many changes to our lives, both visible and invisible. Kelly at Rheumatoid Arthritis Warrior took the time to create a list of 20 ways RA has changed what she sees when she looks in her mirror. Her simple list recounts for us of all the little ways illness creates loss in our lives. Read 20 Signs of Rheumatoid Arthritis in the Mirror.
All too often part of the illness experience is letting go of previous life plans and careers that just don't fit any more. Finding yourself on the path not taken can make you feel totally lost and missing your old, pre-illness life. Diana from Somebody Heal Me: the musing of a chronic migraineur shares with us what it feels like now that chronic migraines have taken away her ability to pursue her dream profession. Read Lost: Chronic Pain Erased My Plans.
How difficult it must be to know that each time you eat a new food you risk worsening your Crohn's disease and suffering some very unpleasant, gut-twisting consequences. Such is the life of Duncan from Duncan Cross: ill. humored who is the founder of the PFAM blog carnival. Food is his four letter word, and until science comes up with a better way for him to get nutrition, he is resigned to having to eat it. Read Food is a four-letter word.
My contribution to this edition of the PFAM blog carnival is a post about the words can't, won't and don't, which symbolize the barriers and limitations people with chronic illness face. While it is true there are things I can not do or change, I can defy those limits by focusing on the can's, do's and will's that still exist in my life. I'm rediscovered my fighting spirit, striving to live my best life despite chronic illness. Read Can't, Won't, Don't.
That's all for this edition of Patients for a Moment. Join us next time when Leslie from Getting Closer to Myself hosts on February 24th. Her question for us then:
What’s Illness Got To Do With It? What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?