Published 12:00 am Saturday, September 23, 2006
By Angie Long
Dealing with an invisible chronic illness (ICI) is made much easier if the person has a strong support system in place.
Getting family to understand the condition and to realize the ICI has changed their loved one permanently is crucial, Donna Toxey of Opelika said. Toxey, a minister's wife, suffers from fibromyalgia (FMS) chronic fatigue syndrome (CFS), mitral valve prolapse and several other ICIs.
“Life is going to change, and you have to accept that. Get your family to help. Kids should do housework. It's how they learn responsibility,” Toxey said.
“They should learn to cook and wash dishes (even boys). My grown sons have never turned their underwear pink!”
While Toxey says her loved ones have sometimes been resentful of the extra stress and work her condition has put on the family, she adds it is a “day by day thing.”
“At other times (my family members) are very loving and supportive. I've lost many ‘friends' due to the fact people want a quick fix to health problems and don't understand my having to cancel outings, etc,” Toxey explained.
Ellie O'Steen of Auburn, who battles osteoarthritis and FMS, said her family and friends have largely been patient and supportive.
“They try to help when I ask but I try not to make that a habit. I try to pull my own weight. I do have one special friend who doesn't deal with pain herself but is very understanding and supportive and that helps a whole lot,” O'Steen said.
“She is a rare individual to have that sensitive insight and I am blessed to have her.”
Don Sprayberry of Anniston, forced by CFS to go on disability, said his wife of 36 years has been “the biggest blessing in this illness.”
“She believed from the first day of my illness that I have a real illness and spent many hours praying for me. My wife has spent many hours in doctor's offices, hospital rooms and hospital emergency rooms with meŠno one could have a more loving wife than Ann.”
Sprayberry said the CFIDS Association of America and all the help and encouragement given to him over the years through the organization had also been “a big help.”
“This group has fought the battle for Chronic Fatigue from Congress to the smallest town in America. They have been used by the Lord to give thousands of us hope a cure will someday be found for this illness.”
Medications can relieve some of the pain and fatigue brought on by ICI, with anti-depressants often used to help boost the abnormally low serotonin levels seen in many ICI patients. Low serotonin levels equate higher levels of pain perception. Pain relievers used to treat arthritis can also be helpful.
Medications for sleep can help restore the restful nights many with ICI desperately need. Other treatments that seem to help some, if not all, patients are therapeutic massage, acupuncture, chiropractic adjustments and water therapy, the latter being the “most beneficial” to Sprayberry.
O'Steen has also found relief in the water.
“I love lap swimming and have been doing that on a regular basis for 24 years. Swimming helps each the pain. I do often deal with pain for several hours after the workout, so I have to learn how to read my body each day and set reasonable goals for that particular day.”
For Ann Bearden of Greenville, who suffers from FMS, a therapeutic vibrating machine similar to the ones used by chiropractors has been helpful.
“I am vibrated from the back of my neck to my ankles. Sometimes this can be very uncomfortable because the muscles are so knotted and sore. Choosing to persevere will loosen and relax the muscles.”
Bearden has also found relief from the use of toning tables.
“These tables manipulate your body for you, so the muscles aren't stressed, blood flow is increased, flexibility is improved and it leaves you feeling more energized.”
Regular, gentle, low-impact exercise, such as water therapy, walking and riding a stationary bike, is strongly recommended for ICI patients to help control the symptoms of their illness.
Helping others helps you
Other “therapies” bring relief from ICI, including the companionship of pets.
“We have both a dog and cat and caring for them lets me get my mind off myself and give back lots of affection and love in return,” O'Steen said.
The ICI patients also said such activities as working crossword and soduko puzzles, reading, surfing the Internet, listening to relaxation CDs and Christian music and connecting with other ICI patients online brought them comfort and relief.
For Sprayberry, serving others brings him relief from his CFS.
“I try to take my mind off myself and try to encourage others fighting far bigger battles than mine; this can only be done through God's love. I can't do manual labor, but I can cook a meal or write a note for someone who is hurting and share the love of the Lord with them.”
When his health allows, Sprayberry says being outdoors with a fishing pole in his hand is great physical therapy.
‘Keep on keeping on'
Educating yourself and others about your illness once you are diagnosed with an ICI is very important, ICI survivors say.
“You have got to learn everything you can about your illness and many times, you have to teach your doctor about the illness. After 13 years of illness, I still carry every new thing I read about my illness,” Sprayberry said.
O'Steen said learning to adapt your lifestyle to the changes ICI brings is crucial.
“With FMS try to recognize it is not life-threatening, but it is life-changing, and learn to embrace those changes for the better. It will take time though, so be patient with yourself. Each day will be different and it takes patience to keep on keeping on.”
While there are those who still question the validity of ICI, Toxey wants to remind readers other diseases of the past were also ridiculed, “until science caught up.”
“For those who have a family member or friend with an ICI, please stick in there with them. Many times, the only thing that keeps chronic illness sufferers from committing suicide is their family and friends supporting them. If you don't have that support, it will kill you - literally.”
Toxey recommends ICI sufferers and their families and friends visit websites such as www.restministries.org
to get free articles and brochures.
“I think churches should consider a ministry to the chronically ill in their community. We bring food to those in grief or in chemo, but we don't know how to do an ongoing ministry for years,” Toxey said.
“We have a fast food mentality when it comes to illness. When a person doesn't get well quickly, others get tired of it and give up on them. People with chronic illness need at least one person to be in it for the long haul for them.”
O'Steen, who has worked with chronic pain patients as a licensed massage therapist for over 20 years, said she has come to respect the true “survivors” of the world.
“I get so tired of these TV programs where people attempt to beat the elements, eat bugs, etc. but are healthy and strong individuals. People in pain are true survivors, and I'd like to see more media publicity of those with disabilities who just go about living their lives day to day.”