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.
Wendy McCance
To contact Wendy McCance about a writing assignment, interview or speaking engagement, please email her at: [email protected]
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That is great you could have that discussion with her. She probably feels much closer with you right now.
It really worked out well. Yesterday I was having an off day. My daughter had asked if I was doing ok and I explained that I was having a “migraine day.” She got it and I was relieved.
Wendy, you are such a source of inspiration to me! This post was something I needed today. As someone who suffers from RA I can totally relate and am finding my voice to communicate to my family, especially my niece and nephews, about that it’s not something life threatening but it is something that is there! I constantly feel the need to apologize to them when I am unable to run around and play games on “bad” days. I like the way that you explained things to your daughter and it gives me much hope. You go girl! I’m keeping you in my prayers that your fibromyalgia stays under control with your medication.
Wishing you abundant blessings,
Kimmy
http://www.withoutalabel.me
(I place my website here because it is not linked to my wordpress account. The one that is linked is one that I am a guest author for. Much love)
Hi Kimberly,
I am so glad that this post inspired you. Your comment means the world to me. Thank you. You might want to check out, The Side effects of Illness That No One Talks About which was posted April 21. It’s directly about having an illness and how it feels when you are around friends and family. I’m wishing you all the best. I’m also glad that you put in your link so I can check it out.
In my PT days, I had a client with Fibromyalgia - I spent a lot of time researching to find out all I could about this so that I could work with her - I’ve never forgotten her and often wonder how she is doing.
Love this post about communication!
Thank you.
Communicating with our children is always an uphill battle since most children think the world revolves around them. It is the nature of the “beast”. My son, at 27, still has symptoms of “what-do-you-mean-I’m-not-the-center-of-the-Universe” illness, though there are times when he does take the blinders off and realizes that his mother is just not having a good health day. I suffer from type 2 diabetes and osteo-arthritis and when he realizes that it’s a particularly difficult day, he pitches in.
Knowing about your illness makes your generosity with regards to the “Blogger Spotlight Fridays” that much more awesome and awe-inspiring!
You rock! =)
Hi,
Your comment was great. One of the best parts of blogging is how it opens your mind to so many different perspectives. I’m sorry to hear you have health issues as well. It is nice to bounce these thoughts off of someone who has experienced the same thing.
I hear you about communication. Sometimes my family spin in their own worlds of work, friends, school, that when you tell them something it simple glides over their heads, they make the sounds they think you want to hear and then go back into their own orbit again
I have learned when I want to say or explain something that is important, I stop them and say “Look at me with both your ears!” Then they listen
I think you are doing exceptionally to manage to do as much as you with Fibromyalgia
Hi Claire,
Thanks so much. Your family sounds a lot like many people I know. I can definitely relate.
I do think that sometimes it is not how we communicate or what we say that is the problem but the other person’s willingness or ability at the time to take in what you are saying. Your children may not have felt ready to acknowledge your illness and the impact it has on all your lives, they wanted their mum to be “normal” so no matter how carefully you explain and no matter how many times if they are not able at that point in their lives to absorb the facts then no matter how hard you try it will not sink in.
I understand some of your frustration with this. I have given up trying to explain to my husband why certain things have not been done or why it can take me days to make a simple phone call. He does not believe in depression, refuses to acknowledge its existence or that I may be suffering from it, he thinks it is only malingering and that I should just snap out of it. There is no way I can make him understand until he is willing to give up his belief that it is not a real illness, that just because there are no physical symptoms that I cannot be ill.
I hope your daughter does now have a better understanding of your illness and that as she matures she is able to make allowances and see that when you cannot do things with her it is not because you do not want to but because physically you are unable to.
What a beautiful comment. Thank you so much. I’m so sorry about what you are going through. My uncle had depression and so does my dad. So many people don’t get it unless they see the physical symptoms. Hopefully your comment will be eye opening for others.
Wow! Reading about your week-end wore me out.
I so get what you are saying about communication. We forget that what we thInk often and loudly in our mInds is not saying out load and clearly to the ones who need to hear it. Dwelling on a subject it not always healthy, but taking time to truly ensure understanding is.
I am sorry to hear about your condition. I know that it can be annoying, frustrating, painful and exhausting. But you have amazing personal strength that allows you to push through it all and that resonates through your writing.
Thank you for the comment and your kind words.
I meant every word my friend. Be well.
This is such a great post in so many ways. It’s all about communication. Your perception versus that of those you ‘think’ you are communicating with. Four people watching a house burn from 4 different sides will all see it differently. Each will think that what they see is ‘obvious’ to everyone else. Great post!
Thanks so much.