Mommy moments come in all forms of days at the beach, backyard BBQs, or kids reading groups at the library. These are all wonderful times to get to know other mothers and share in wearing out your kids, as well as gaining some understanding from other parents. But the number of women who live with chronic illnesses such as fibromyalgia and diabetes continues to grow, the spontaneity of these fun activities is easily disrupted.
According to the National Fibromyalgia Association, fibromyalgia (FM) experts estimate that about 10 million Americans and approximately 5 percent of the population worldwide live with this disabling condition of FM, one of the fastest growing auto-immune diseases in the USA. When I recently went to my adoptive moms play date group, even within this niche group, three out of the six of us had chronic illnesses. Being aware of they illness symptoms a friend may cope with, and the daily changes in their limitations and abilities, can make a big difference in how much they are willing to be a part of a mom's group and feel comfortable around other moms who all seem to jump hurdles at the speed of light.
[1]. Find out the best times of day for play-dates or activities. This will vary from season to season (weather and heat can affect it a great deal); and it also is different from one illness to another. For example, for some moms, mornings are good and afternoons are exhausting; for others they aren't moving or out of PJs before the clock strikes noon.
[2] Be understanding if she has to cancel, rather than bombarding her with guilt. Coping with a chronic illness means that every day is unpredictable. Last week I did nothing other than take a step and my knee locked up for four days. I did all the heat and ice therapies, took extra medication and tried not to complain. But all my plans were cancelled with no advance warning.
[3] Ask her to clarify what she's comfortable doing. For example, you might say, "How far do you want to walk today?" and try to accommodate. Even though you can see the park from your house two blocks away, she may not be bale to make it. Stairs may be impossible, and I won't even take escalators any more because of my knees, so take the elevator with her. Walk at her pace, recognizing that she may have to take rest stops every few minutes even though you've only walked fifty feet. Do her a huge favor and chase after her kids for a few minutes. Standing for longer than a couple minutes may also be a challenge. Despite the pain of walking, it's better for me than standing. Even though the line at the carousel looks like it's only five minutes, she may need you to offer to stand in line and then let her jump in beside you at the last minutes.
[4] Show some interest in what she deals with but ask politely. For example, say, "What is your greatest challenge?" Avoid sharing with her about the many cures you've heard about on TV and in the magazines for her illness; don't try to sell her products from your trunk that will cure here overnight; and don't think that it will encourage her to hear about your mother's cousin's sister who has the same illness but still manages to raise four children and work a midnight shirt at the local hospital because she "refuses to give in her illness."
[5] Simple things that may be difficult for her. For example, if you go to the beach, ask her if she'd like to be dropped off with some stuff and save you a spot. She may not be able to plop down on the hard sand so remember to bring a few lawn chairs so she isn't the only one two feet above the others. Most people on medication need shade and limited sun exposure. And don't expect her to carry the cooler, the poodle, the beach toys and watch the twin 2-year-olds while you park the car. While you don't want to make her feel helpless, and she doesn't want the attention, be aware that she may need some extra considerations.
[6] Don't presume that she can watch your children diligently, even for five minutes, unless she volunteers. Taking care of kids is exhausting and caring for her own may be draining the little strength she had left. Plus, if your kids are run out into the street, keep in mind that she may not physically be able to sprint after them as fast as you could.
[7] Plan activities that she can be a part of. While you may love your stroller exercise groups, and mommy and me gym classes, these may not be possible for her. Find out what types of things she likes to do and then ask if you can join her for these. Keep the activities under two or three hours; even though you may typically go to the zoo for six hours, understand that she may need to leave earlier than you. Don't say, "A little more walking may do you some good!"
[8] Lastly, say the words to her that every mom wants to hear: "You are an amazing mom and I don't know how you do it all. I truly admire your perseverance and strength."
[1] Recognize that the illness is chronic You will swim through the phases of grief for the rest of your life, because with a chronic condition comes new limitations as the illness progresses. Don't be too hard on yourself; reach out to others, build up friendships with those that understand, pursue new hobbies that get your mind off of the illness, take a second look at your faith and how this effects it.
[2] Be a good advocate for your health. You know your body better than anyone else and the likelihood is that you will get tons of well-meaning advice from both friends and strangers. Be discerning in what you choose to follow and what you choose to let go. Kindly thank those that offer their advice but don't make any promises or feel obligated to try anything they offer.
[3] Do research on new medications and study possible alternative treatments carefully. Be wise in how much money you invest in alternative treatments; don't continue to dump money into alternative treatments when the practitioners continue to offer promises and testimonials. Recognize that alternative supplements are not regulated by the FDA and may not be as effective as they claim or even safe.
[4] Choose your doctors carefully Ask for referrals. Find a doctor who your personality clicks with. Don't be demanding or act like you know more than s/he does, even if you occasionally do. Build a team of doctors that is willing to work with you to give you the best quality of life.
[5] Refuse to give into bitterness It's easy to get caught up in the blues of ?but they don't understand!? and ?they are so lucky and they don't even appreciate it!? Defy the tendency to feel sorry for yourself and instead choose joy. One of the best books I've read on the this topic is Tim Hansel's ?You Gotta Keep Dancin?.?
[6] Step outside yourself Even if you aren't happy about the diagnosis, in time you will witness others going down this same path and you may have a desire to reach out. Follow that passion! Reaching out to another person who is dealing with similar circumstances can be healing for both of you and will give your illness purpose, even on the days with great physical pain.
[7] Get a grip on guilt It's natural, especially if you have a family, to feel intense feelings of guilt that you are bringing everyone down with you. Recognize that this illness is not a judgement or punishment'it simply is. You may not be able to choose to live without it but you can choose how to live with it. Your kids and spouse are watching to see how you will handle this. Make them proud.
[8] Allow yourself to be vulnerable On the flip side, you don't have to be a steel magnolia and always keep a stiff upper lip. Find a friend, a mentor, a buddy?someone who you can let down your frustrations, struggles, hopes and fears with. You'll find that illness may leave you with fewer friends than before but the quality of relationships may be much more precious.
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