by Melissa Swanson, writer for the NFMCPA
It can take many tries until we find the correct physicians, therapies, medication, supplements, etc. It is no different in finding the right support group. I joined a long list of groups before I found the right fit. The group name, about section and rules may sound good; but until you have read posts, comments and read the admin's responses you will not know the true atmosphere of the group. If you are lucky, you have someone you trust that will give you that perfect reference.
I found Clarissa's wonderful group Fellow Travelers, Support and Chat (FMS/CFS/ME) through my dear friend Celeste's introduction. I have, in turn, shared my love of Clarissa with my friends; and now have the great pleasure of introducing Clarissa Shepherd to you.
“Clarissa helps those of us living with invisible illness in a special way. As a humble person with great empathy, she guides us to our own path by asking questions that evoke self-awareness. Because she personally knows the hardships so many of us encounter and understands the obstacles, yet all the while, she approaches life with an affirmative eye. One only has to read one of her many affirmations to know how she shares her gift with the world. I am lifted up as a person by knowing this leader of souls. She constantly reminds me that living with a chronic illness and pain can bring great joy if we appreciated those taking the journey with us. Thank you for helping me stay the course my friend. In healing and hope, Celeste Copper, R.N. Author, Patient/Advocate/Fibromyalgia health expert.
NFMCPA: What was your life before Fibro?
CS: “I was a very active person. I was in a high pace management position and I loved a challenge. My husband and I traveled a lot and enjoyed every minute of our time together”
NFMCPA: When did your first signs show?
CS: “I had some leg pain before the illness hit me. It began on August 11, 1992. I came home from work and was cooking dinner when the room began to spin and I went down. After a lot of testing I was diagnosed with Mono stemming from Epstein Barr virus and Fibromyalgia. Beginning from the moment I got ill I was bed bound for years not even able to feed or bathe myself.
NFMCPA: What other co-morbids have been diagnosed?
CS: I have ME/CFS, RLS, IBS, Chronic Vertigo and Ocular Migraines
NFMCPA: How did it initially change your life?
CS: My life is nothing like it was before my illness. I have vertigo which restricts the length of time I can spend in the car. We can no longer take trips or family outings. I've missed so much of my daughter's life and missed the birth of my grandchildren. It has cost me so much time and things that are dear to me. ME/CFS and Fibro stopped me in my tracks. I had to resign a job that I loved. I needed constant care and wasn't able to sit for me than 15 minutes and that was stretching it.
NFMCPA: What changes have you had to make in your life?
CS: My entire life has changed. We are still unable to take trips or go out with friends. We've learned the art of pacing I have to rest before going anywhere.
NFMCPA: How is your relationship with your family and friends?
CS: After the first couple of years our friends and extended family left us. When you are no longer able to entertain or go out – you get forgotten. So sad as to the truth of some peoples character.
NFMCPA: What are your biggest personal battles now and how do you confront them?
CS: I battle something every day. I always seem to have new symptoms arising. There is no other choice but to meet the battles head on and continue to try to heal. Due to my exhaustion and weakness my Daughter and her family come to our house for visits & dinner. At least this way we can keep it low scale, order in and still stay in touch. This works for all of us and I feel I have some sort of social life. It is a huge challenge due to my illness to do simple things such as taking a shower, bending over to wash my hair, etc. Missing life, in general, is such a source of grief.
NFMCPA: What inspires you?
I have an online support group. Hearing that I'm not alone and that others are living this way inspires me. It helps me to pass on all that I've learned doing research to help myself. The courage and compassion of that 24/7 in pain, and still reach out to others is the ultimate inspiration.
NFMCPA: How is your life now?
CS: I'm better than the first years, yet life is very different. I live a very low key life without much contact with the world around me. I'm very chemically sensitive so if I do feel like going to the store, etc I must be very careful. Being exposed to perfume, cleaning supplies, etc. can send me into an attack of all my symptoms and put me in bed. It’s extremely stressful on a marriage so that takes constant adjusting.
Yet, I've done years of research in order to get up and out of bed. I've learned that my illness is neurological in nature. This answers a lot of questions to many of my symptoms. I've found how to eliminate foods that cause symptoms to worsen, to find proper supplements to rebuild and repair a weakened immune system, and especially do learn and practice deep breathing each day to help with pain, brain fog, energy and more. I live in gratitude that I've come a very long way and I am no longer confined to my bed.
NFMCPA: You are an inspiration to so many. What advice would you give them?
CS: Avoid drama, for its draining of precious energy. Learn to eat better, get on supplements for deficiency such as B12, Vitamin D, etc. Rest as you need to without placing blame on yourself. This isn't of your making. It is my pleasure to have written a short guide which has helped so many find proper supplements and many life changes to diminish symptoms. My hope is that all of you may find some healing. There is no cure, yet improvements, even small ones, mean so much when you're living with Fibromyalgia or ME/CFS. Learning that the new way of life can still be meaningful is important. Adjusting to how you must do things, in a different way is just that = readjusting. Its not giving in or giving up. Allowing yourself to heal by letting go of the grief from the past, opens up the possibilities of finding what you're to do with the future. You may even discover talents, that you didn't know you had.
“My Inspirational Mother has fought years with Chronic Fatigue Syndrome & Fibromyalgia all while wearing the hero cape labeled Mother. Her cape should be lined with golden stars!
She has lived her days coping with the everyday struggles of CFS & Fibro, sleepless nights all the while raising a carefree, rambunctious teen who like most teens worry their parents with coming in well passed curfew and being too carefree to check in. She has taught me with God’s grace, guidance, patience and most of all unconditional love that has shined my whole life through.
She is not only my mother, she is truly my best friend, and she is my hero! I can only pray to be the mother to my children as the mother she is to me! I could never say Thank You enough for all she has ever done for me!” Love you dearly Mom ~ Sylvia
“Walk in that light that still shines from your heart. Many may not see your courage, yet you're brave beyond measure.” ~ Clarissa Shepherd
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Accepting and Surviving Chronic Illness
Walk in The Light of Your Fearlessness
Facebook support group; http://www.facebook.com/group.php?gid=109937565707495&ref=mf
Clarissa's book: Find your way: A Guide to Healing While Living With Chronic Fatigue Immune Dysfunction Syndrome and Fibromyalgia
A step by step guide of several life changes such as proper supplements, breathing techniques, eliminating chemicals and toxins from your life and body, Etc.