Article by Wendy McCance
This weekend was super busy. On Friday, my husband and I spent a few hours at my mom’s house having a garage sale. My son had a baseball game that evening (thankfully my husband took him to his game). My daughter had a “red-carpet” sleepover party for her birthday. As soon as she got home from school, I had to run her over to the party store to pick up an actual red-carpet, a v.i.p. rope, a trophy. red and white striped popcorn boxes and movie candy (the candy you see in the boxes at the theater). When we got home we rushed around setting up rows of seats in the front room, laying out the carpet, putting up the V.I.P. rope and popped popcorn. 7 girls came over at 7:30pm dressed as their favorite celebrity. The girls watched a movie, voted on best dressed (the winner got a trophy) and then had a surprise. Underneath their seats we had taped flat packages that contained a giant beach ball that you could blow up. The kids got their beach balls and headed down the basement to toss them around (I was secretly hoping that they would wear themselves out and be too sleepy to be wild later in the night). No such luck. The kids were loud well past 1;30am. It was a long night.
5:40am I had to get up and wake up my oldest daughter who was being picked up to go to the farmer’s market at 6:20am. I went back to bed and got a few more hours of sleep. Up at 9am to get the girls from the party woken up and ready to be picked up by their parents. My husband had left soon after to get over to my mom’s house to set up for the second day of the garage sale. I took a shower, fed the kids and then we all drove over to help out at the sale.
The day was a long, hot one, but also very profitable. By 6pm we were packing up and heading home. By this point I was exhausted. I could have laid down and fallen asleep without any problem. My body ached so bad and I couldn’t think straight. For someone with Fibromyalgia, I thought I had done fairly well getting through the day.
After dinner, my daughter wanted to go for a bike ride with me. I explained that I was much too tired. Her reply was that I was always tired and I must be getting really old. My husband explained to her that it wasn’t my age but the illness that was making me feel so exhausted. He offered to ride with my daughter and I was grateful for his support and understanding.
Later that night my daughter was watching some tv. At the commercial I asked her if she really understood what Fibromyalgia was. What she said blew me away. She said she didn’t know I had it. She knew about my thyroid problems, but thought that was it. She had never questioned the pills she saw me take each morning and each night. She never gave a second thought to afternoon naps or complaints that my body was so sore and stiff or that I wasn’t getting around so well that particular day.
I had thought I had explained the pills to the kids before. I thought I had always been pretty direct when I wasn’t feeling well and why I felt that way. I started at the beginning and told her when I first had symptoms, reminded her of doctors appointments, when I was in the hospital and times she saw me barely able to get around. I had really thought that all of these years I had been open about what I was dealing with physically.
It’s amazing what your own interpretation of communication is. My daughter had seen me not feeling well, going to doctor appointments and taking pills and didn’t get it. I couldn’t understand how this was possible. It took some soul-searching to realize that I don’t want to define myself by having Fibromyalgia. I also don’t want to have the kids growing up feeling that their mom is out of commission. Honestly, I would try to ignore the symptoms and try to keep feelings of exhaustion and pain hidden from my kids as much as possible. I did talk about it, but I tried to keep it to a minimum.
I poured my heart out to my daughter and explained Fibromyalgia is not life threatening. The pills I take help take the edge off my symptoms. I said that before I was taking the medication the pain was like a horrible migraine. All you could do was lie down and hope for as little commotion as possible. Sleeping was all you wanted to do, but because the migraine was so bad, sleeping would be difficult. When I started taking the medication, the migraines became like an annoying headache that would never go away. You could get through your day, but you were always aware that the headache was there. If you do too much, the headache still gets worse. I told her that Fibromyalgia is just a completely annoying illness. It would never be horrible or scary, but it would always be there.
I felt better after we had really talked about it. My daughter asked questions and I believe she walked away from the discussion truly having a better understanding of why things are the way they are (only time will tell). I have to admit that it was a good jolt to realize that my version of communication might not be enough for the kids. In the future if the kids seem rather indifferent to a situation and I am left wondering why they don’t seem to get it, I will have to make an extra effort to make sure we are all on the same page.
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