By Sabrina Dudley-Johnson (aka FibroDiva and Fibro Cop)
May 13, 2018
I’m going to start straight out the gate and say, "being a grandparent is a whole lot easier than being a parent." Especially when you throw in Fibromyalgia. Now I do admit that I cringe every time one of my grandchildren say, “YaYa, you are so lucky that you don’t have to go to work”. I take a deep breath and remind myself that they are children and this statement is an opportunity to educate another generation on Fibromyalgia and invisible disabilities.
As a divorced mom with Fibromyalgia, I lived on an emotional roller coaster. I wanted to attend every event of my children. If I couldn’t make it to a game or dance recital, I would feel guilty and worry that my children were being disappointed by yet another parent (I was going through a divorce and my ex-was a some timey father). So, I would drag myself to events even if I felt like I was on my deathbed. Then I would faint from exhaustion or crawl out doubled over with pain. Of course, I thought my children were mortified and embarrassed as the school principal or the church pastor had to call for an ambulance and mothers of my children’s friends jumped to volunteer to take them home for me. Eventually, I learned that even though my children were worried, they were never embarrassed. My children went above and beyond the call of duty to learn what was wrong with their mom and how to help me cope.
The tips that I learned to make life as a mother with Fibromyalgia a little easier are the same tips that are making life as a grandmother with Fibro enjoyable.
Tips for parenting with Fibromyalgia
1. Discuss your health with your children in age-appropriate terms. My children knew that their
mother was sick and couldn’t be a police officer any more. They knew that my sickness made me hurt and tired but that it was not going to kill me. My grandchildren know that their YaYa is sick and will always be home when they get out of school. They know that my sickness means I can’t do all the things they may want to do with me but that it is not going to take me away from them.
2. Don’t make a promise you may not be able to keep. I never say, ‘yes I will do such and such, or, yes I will go to _______ (fill in the blank).’ I always told my children, ‘I will try, or, let’s see how I feel when the time comes.’ Now my daughter, who works the overnight shift in a stressful industry, says the same thing to her daughter and even to me if I ask her to attend a workshop or event.
3. Set up a backup person, someone whom you and your child are both comfortable with and is trustworthy, who could step in for you and attend events if you cannot. Extended family and friends were a lifesaver for me. Stand-ins were ready and waiting for a call to attend events. Nowadays my children have adopted this strategy as busy parents. It truly does take a village to raise a child, no matter if the parent is disabled, chronically ill, or just overworked.
4. Develop alternative ways to perform activities. Let your child do homework in your room if you are bedridden. Have your child bring the laundry to you on the couch and allow them to help you fold it. Get an adjustable bar stool chair to sit in at the kitchen counter and let your children cook simple foods that are age appropriate. My 6-year-old granddaughter Victoria thinks she invented Ham and Cheese sandwiches and loves reteaching me how to make them. She has to reteach her YaYa every time because YaYa has Fibro Fog and is rather forgetful.
5. Let your child be a child, not your caregiver. If you need ongoing assistance preforming activities of daily living, look into hiring a housekeeper or check out services offered to residents with disabilities in your state, county, and city/village.
6. Let your child know what color your light is each day. My children developed a way of knowing what I could and could not do by asking, ‘Mom, what color is your light today?’ The answer would be either Red Light, Yellow Light, or Green Light. If it was a Red-light day, that meant my pain and fatigue were too high for mom to do anything. If it was a Yellow light day, that meant that it would be difficult to do a lot but I could probably do 1 activity and they got to pick the activity. If the answer was, ‘it is a Greenlight day’, that meant that my pain and fatigue were low and we could have a good old time.
Parenting with Fibromyalgia is difficult but it is not impossible. Grandparenting with Fibromyalgia is much better because like with any grandparent and grandchild relationship, you can love and spoil your grandchildren and then send them back home to their parents.
Happy Mother’s Day.
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