Susan Midcap lives in Hartville. She's married and has a daughter, Jen, a recent college graduate. Susan teaches at Lake High School and is 52 years old. She smiles a lot and her students know her as one of the “cool teachers.”
And she's tired most of the time. But it's not the kind of tired you feel when you've stayed up too late, or missed your afternoon nap. It's not the kind of tired that goes away after a good night's sleep. Susan has Chronic Fatigue Syndrome and she has experienced what she calls indescribable exhaustion, for more than 20 years.
"The exhaustion is beyond belief," she said. "It's kind of like a drop in the ocean; how you feel tired compared to how I feel tired."
And she's in constant pain.
"Actually, when something stops hurting I think for a minute that something's not right," she said. "And here it's the absence of pain."
Susan was diagnosed with CFS and Fibromyalgia in 1988. She said it's hard to tell which of the diseases causes each symptom, but that Fibromyalgia is what causes the pain and soreness in her muscles. CFS is the one that sometimes forces her to cancel plans, sit down during her lunch hour or take a break while shopping with her daughter.
Both CFS and Fibromyalgia are chronic disorders. CFS affects the brain and multiple body systems according to the CFIDS Association of America's Web site. It affects more people in the United States than multiple sclerosis (MS), AIDS or lung cancer. Fibromyalgia causes muscle pain, fatigue, and multiple tender points, according to the Web site for National Institute of Arthritis and Muscoskeleta and Skin Diseases and the Department of Health and Human Services.
A jarring realization
Susan isn't sure how long she had symptoms of exhaustion related to CFS before going to the doctor, but her daughter was about 5 years old at the time Susan was diagnosed.
"I figured it was just because I was a new mom," she said. "And then it just never went away."
That's when she had the car accident. It was just a fender bender but it was enough.
"I got rear-ended and it just kind of shook up my system enough that it trigged it," Susan said. "Sometimes a traumatic event in your life, a lot of stress in your life, something like that will jar you."
Her symptoms became more pronounced after that.
"I would wake up in the middle of the night and my arm had fallen asleep and I knew I wasn't sleeping on it. I wasn't laying on it or anything," she said. "And then I would have these really strange dreams and stuff and all the sleep disturbance things were happening."
So Susan went to the doctor for what she thought was severe premenstrual syndrome.
"I said, 'you've got to give me something because I'm pretty sure this is PMS," she said. "I feel like I'm going crazy. I'm just having all these weird symptoms."
Susan was lucky. Her doctor was able to recognize her symptoms as CFS and did the tests to rule out other possibilities.
"I was relieved," Susan recalled. "There was a name for it and I knew I wasn't losing my mind."
More than fatigue
While the syndrome itself isn't progressive, Susan said her symptoms wax and wane.
"I can go through good times and then I have down times," she said. "I've been getting more exhausted and I don't know if some of it's old age or the illness, because I try not to focus on it."
Susan said that unlike someone with a broken arm, whose problem is apparent and obvious, her symptoms are hidden, invisible.
"I have these dark circles," she said, gesturing under her eyes, "but most of the time I don't look sick. How do you tell somebody? I have all this pain that nobody can see."
Susan said she's learned over the years not to waste energy trying to convince others of the reality of her illness. "I do have a handicap sticker on my car. I've had people yell at me in parking lots because they think I'm OK," Susan said, adding that friends sometimes joke when she has trouble getting money from her purse with her numb fingertips or picking something up off the floor.
"And I try to stay positive and not tell people I'm sick, but I know my limits and I have to be firm" she added. "It's taken me a long time, but I'm learning now to budget my time. I'm learning to say 'no.' A lot of times you just want to do things but you can't."
And for as many times as Susan has to cancel plans, she likes to go for it sometimes, too.
"Sometimes I'm doing things and I know I'm going to pay for it later, but it's fun and if I'm feeling good I go for it," she said. "It's too fun and I like to have fun."
Spreading knowledge
Susan hadn't heard of CFS before her diagnosis and since computers weren't as widely-used during the time, she had to seek information on her own. She looked for information elsewhere and found out a friend she taught with at the time also had CFS. Together, the two began attending support group meetings in Cleveland.
When Susan's symptoms got worse, she could no longer drive to make the meetings with her friend. That's when they decided to start their own support group in Akron in 1989.
"We at one time had 350 (members) on the mailing list," she said. "Now I think we have 250 on the mailing list and anywhere from 20-60 people will come to a meeting, depending."
Susan said family and friends of those with CFS or Fibromyalgia are welcome to attend meetings.
"People come to the group if they're feeling good and they can get out, and people will come if they're not feeling good and seeking comfort," Susan said. "I want to get the information out to them so they can help themselves."
Susan's support group
Susan Midcap and her friend started their own local support group in 1989 when making trips to Cleveland to attend a support group there became too difficult. It's called The Akron-Canton Chronic Fatigue Syndrome and Fibromyalgia Self-Help Group and they're holding an event next Sunday called the Fibro Feast.
Fibro Feast
An indoor picnic feast with Fibromyalgia- and CFS-friendly games including Fibro-style Bingo, and a ring toss. Prizes for everyone. Friends and family of those with CFS or Fibromyalgia are welcome to attend. The event is free.
Date: Sunday, August 17
Time: 1-3 p.m.
Location: The Oak Hill Presbyterian Church. 2406 Ardwell Ave., Akron, OH 44312.
Next group meeting
Date: Sunday, November 16
Time: 1-3 p.m.
Location: The Oak Hill Presbyterian Church. 2406 Ardwell Ave., Akron, OH 44312.
Contact Susan Midcap for information about the support group at smidcap@neo.rr.com.
