Monday, March 29, 2010

Parenting with a Chronic Illness (like Fibromyalgia)

I had to repost this article from the National Fibromyalgia Association’s website:

FM in the Family
Reprinted from FMOnline

Chronic pain adds an extra challenge to every task, to every relationship, to every aspect of life—and parenting is no exception.

Recently we asked people with fibromyalgia to share their parenting tips. No request for tips has ever received such an enthusiastic response. Clearly, people with fibromyalgia understand that maintaining healthy relationships with their children is just as important as managing their symptoms—and they have plenty of advice for doing both successfully.

Here we present a selection of the best tips we received, hoping that they will be helpful to other parents with FM.

Time Management
Parenting requires so much energy—and people with FM are constantly focused on how to use their energy wisely, without draining themselves completely.

Chris Robbins, of West Bend, Wis., spent three years bedfast, fighting infections and fevers—and she had three children to take care of. Her solution: she taught the kids to set the kitchen timer for 15 minutes; when it rang, one child would come into Robbins’s bedroom to check on her (and, though they didn’t know it at the time, to give her a chance to check on them one at a time). When she had to get out of bed—to make a trip to the bathroom, for instance—she used that opportunity to teach a simple household task to one of her kids. “Soon, someone could cook eggs or macaroni and cheese. Another child learned to do laundry and another, how to vacuum and do dishes,” she says. “They started young and were proud of their accomplishments.”

Now the mother of two teens and a tween, Robbins has her kids well-trained to carry a cellphone and check in with her regularly—though not, she quips, every 15 minutes.

Making preparations in advance is a great way to keep stress levels down, and energy levels from dropping too fast. Try making school lunches the night before, and teach the kids to keep their backpacks near the front door—already packed with homework and textbooks—so that all of you can rush around less before heading to school in the morning.

Also, be sure to write your children’s commitments on a calendar, so you don’t have to worry that you’ve forgotten that PTA paper drive, that school dance, or that book report due date.

A kid’s schedule can sometimes be a boon to a parent with FM, as Leisa Ryan of Coral Springs, Fla., points out. “My advice for new mothers that suffer from fibro pain and symptoms is to nap when the baby naps—always,” she says.

Kathleen Kay Muir developed a unique system to explain to her family what kind of day she was having. She broke the day into a ratio of work time and rest time. A “50-50 day” was one in which she had to work and rest equal amounts of time. This helps the family understand how Muir feels better than if she simply said she was having a “good day” or a “bad day”—and it helps her teen daughter intuit whether she and Muir can go shopping or hiking, or if they will enjoy a “PJ day” of chick flicks. She has also explicitly told her family which tasks particularly strain her; when her husband and daughter take on those chores—like vacuuming and carrying in the dry cleaning—rather than Muir being stressed or frustrated by the chore, she feels grateful for her family’s willing teamwork. 

For Michelle Hock, spending time with her kids took priority over anything else. When they were little—they are now teenagers—that meant playing with them when they wanted to play, regardless of how much pain she was feeling. It also took priority over household tasks when her energy was at low ebb. “Don’t beat yourself up because the kitchen isn’t clean or the laundry is undone,” she says. “The kids only want their mom—and they want her to be happy, healthy and pain free just as much as you want to be.

“Take care of people first—things later.”

Take Advantage of Alternatives
We live in a technological society—and that can be a boon for parents who are experiencing an FM flare.

“I made sure I had every video available that they enjoyed—also, a remote-control VCR,” says Susan S. Muehlstein. “I taught them how to change the tapes. Timers on TV programs are also great!” She also relied on an alarm system that sounded off when someone opened a door or window; even if she was resting in a different room, she always knew if one of the kids went outside.

Remember that there is a lot of educational programming on TV—your kids don’t need to watch cartoons all day.

If volunteering in your child’s classroom is out of the question, seek out other ways you can be involved. Perhaps you can take on a small PTA project, be in charge of email reminders for your child’s sports team, or be on a planning committee.

Develop a Tool Kit
You may have special tools you use to make housework easier; why shouldn’t you use tools to make parenting tasks easier, too?

If your child plays sports, bring a cushion to make sitting on the bleachers less painful—or a light folding chair to sit on. If your children are infants and toddlers, keep a bag of supplies—diapers, wipes, nonperishable snacks, and whatever else you may need during an outing—in the car.

Parents crave communication from their kids; parents with chronic illness need to make sure they are also sharing information with their children. “I try to let the kids know how much energy I have each day,” says Robbins. “It really helps what they will then ask of me or how they ask.”

Hock agrees. “Open communication about this is key, so the kids don’t think you are trying to avoid them or avoid being with them,” she says. “They are the most forgiving, understanding people on the planet; give them the chance to help you and love you through it.”

“I have a 4-year-old with a great imagination and energy level, and I have explained to her that I have a disease that some days makes me a bit sore and tired sometimes,” says Nancy in Pennsylvania. She also explained to her daughter some of the ways she is managing her symptoms, and bought a yoga tape the two of them can do together.

“The way I conduct myself with an adversity is the way she will see how to handle things that may come her way,” Nancy explains.

Cathy Stenger, who has a 13-year-old son and an 11-year-old daughter, is careful what she promises her children. “I never know what is going to come up that will use up my energy, so I find that in order to avoid disappointment, it's best not to promise something that I don't know for sure that I can follow through on,” she explains.

“My daughter knows that I have ‘an owie’ in my back and it hurts bad sometimes,” says Jennifer Betts, mother of a 3-year-old. “She shows true concern and helps me by picking up her own toys so I don't have to. Children understand a lot more than you think they do. And they love you unconditionally, despite your fibromyalgia.”

Tonya Walmer tried to prevent FM from affecting her children, despite knowing that was an impossible goal. With the help of a counselor, she came up with a way to offer age-appropriate explanations of her condition to her toddlers, who responded well. “That first conversation was amazingly helpful, but even more amazing has been the opportunity for openness and communication that it sparked,” she says. “Three years later, we have had many small conversations about life, the human body, FM, other disabilities, and even my children's own limitations. It has been truly incredible to discover that the very thing I was afraid to own is teaching my children—and myself—so many positive and wonderful things that serve them well now and will continue to influence them for the rest of their lives!”

One mom introduced her children to the world of FM a different way. “The best thing I have done was to encourage each teen that I could help them with a report or paper they had to write—if the topic could be on fibromyalgia!” Deb writes. “The end result was that they came out of it knowing all about the disease. Each of them came out with a greater understanding of why things were the way they were, why I reacted in certain ways, and how our lives were changed by the disease.”

No matter how carefully you explain FM, a sensitive child may react badly. One mom wrote us about her tween daughter’s excessive worrying; the girl is always checking on her mom, even when the mom says she feels fine. The two of them made an appointment with a therapist, who told the girl that she had to trust her mother when she said she was feeling fine—and trust that her mother would ask for help when it was needed. The therapist also emphasized that the child was not responsible for her mother’s health. “Although I have said those things many times, our daughter never really heard it until it came from a third party who she respects,” the mom wrote.

Be Child-Friendly
Keep in mind that your kids are a lot smaller than you are—but that doesn’t mean they can’t take on some responsibility, if you child-size it. Muehlstein used to keep small plastic cups in the lowest kitchen cabinets, so her kids could reach them to get themselves glasses of water; she also kept juice boxes and snacks on the bottom refrigerator shelves so the kids could serve themselves.

Tiffany Grimm, of Kenai, Alaska, has taken even more steps to allow her four-year-old son greater responsibility. “His clothes are in a cabinet that he can reach so he gets himself dressed,” she says. “There is also a hamper in his room for his clothes. It is small so he carries it to the laundry room on his own. As I am folding the clothes he puts away one stack at a time.”

Keep an eye on your medicines, too. Julie McCloskey, an attorney and a mother of two, keeps her prescription medications and herbal supplements in a locked safe, so the kids don’t have any opportunity to get into those bottles.

Younger children love to be picked up and carried around—something that can really exacerbate FM pain. A good option is to get down to the child’s level: play together on the floor, or snuggle together on the sofa. (A good stretching session before getting down on the floor may make playtime even easier on you.) 

Seek SupportMany parents reference a strong prayer life and spirituality as a way they manage their symptoms—and gain the strength they need to fulfill their parenting duties. Many are fortunate to have the support of their own parents, their spouses, and their children.

Whatever your situation, you must develop a system that allows you at least a little time to yourself, to relax, to meditate, to take a warm bath. If your budget allows it, you may choose to hire a babysitter once a month so you can have an afternoon all to yourself.

Part of a parent’s job is to set boundaries for the children—but parents with FM must also learn to set boundaries for themselves. “The very best thing that you can do for yourself is know your limits,” says Suzanne Stierwalt. “Know when and how to say no, and know when and how to ask for help.”

Walmer phrases it differently: “Put your oxygen mask on first,” she writes. Parents often instinctively consider their children’s needs first, but it’s important to maintain a balance. You can’t parent successfully if you are not meeting your own needs, and managing your FM symptoms. “If the balance is off too far in either direction, we are headed for crisis!” she says.

All in the Family
Is FM a genetic condition? That’s a hot topic in research right now, and the jury is still out on the extent to which genetics may influence whether a person develops FM. But what is inarguable is the fact that more and more kids are being diagnosed with fibromyalgia. What happens when a parent with FM has a child with fibromyalgia—and another without it?

“My 10-year-old girl has FM also and she has most of the symptoms that I have. I try to make it up to my 12-year-old girl, who is high energy, by doing things with her on my good days,” writes Shelly Tilley. “On my okay days, I do things with both of them, just keep it kind of low key. On my bad days, I cuddle up with the one with FM, and we make each other feel better just by knowing what the other is feeling. We do quiet things together, like reading, or watching a movie.  That's how I handle being a parent with FM.”

Carpe Diem
“Don’t let a day with your kids slip by,” advises Michelle Hock. “Do what you can do to be with them, pain or not; then rest later. The last thing you want to do is lose precious days with your kids due to this stupid, unnecessary illness.”

Remember that, while child-rearing can be stressful, it can also be joy-filled—and therapeutic in its own way. “My children have kept my spirits up and keep me very active, which is the most important thing right now,” says Juanita Martinez.

Seeking alternatives and creative solutions to parenting challenges can add up to wonderful memories for parents and children alike—and remember, the kid perspective is different from the adult perspective. “My kids remember the hardest times of my fibro (they were in their first years of school) as ‘the best times!’” says Muehlstein.

“For a while I felt like a failure as a mom because I hurt to much to take the kids to the park, play soccer, etc. One day my oldest son, when he was in first grade, said he felt so lucky because he had me around all the time,” recalls Mary Ross, who lives in Oregon. “This made my realize that while I couldn't necessarily be as physically active with my kids, I could still be a good parent for them.

“In fact, I think fibro has been a blessing in that it has forced me to slow down and truly get to know my children.”

“Be laid back,” Grimm adds. “They are kids. Their standards aren't high. It’s ours that are hard to meet!

“As a former child psychologist and teacher I would say it is most important to give your children their own responsibilities, help them understand and help, and be involved every way you can (even if that means watching a movie together or ordering the pizza for their friends).”

“We find small reasons to celebrate resting, or exercising to keep energy flowing,” writes Paige L. Koehler. She also makes sure to emphasize the things she can do, rather than the things she can't. “I couldn't carry my son—he was too heavy—but I used a wagon and stroller quite a bit,” she says. “I had to stop bowling, but I could still walk. I had to quit chopping and cutting food but I could still supervise a small cooking group with the family. 

“Find the fun, and you will do fine.”

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