Friday, August 30, 2013

Parenting with Fibromyalgia




One of the most common themes I hear in the Fibromyalgia community is the difficulties of being an active parent in the lives of our children. Because this disease causes overwhelming fatigue and debilitating pain, those who suffer find that being active in the lives of their little ones not only painfully difficult but sometimes impossible. While I too have made similar complaints, I have worked hard to be there for my daughter the best I can and to educate her about my disorder. This has made her into a more understanding and empathetic child.

When I lay on the couch or in my bed after a massive flare or while fighting through a migraine, it is my baby who is my constant caretaker. She gets me towels, fresh ice packs, and keeps my water bottle full. At 5 years old, she is an amazing little caretaker. The past 48 hours though, I have gotten to baby my baby the way that she has taken care of me. After starting Kindergarten on Monday she seems to have gotten a bug and spent the last 12 hours with a fever of 102F. She was born with bad hearing and after constant ear infections when she was younger, she had surgery on both her ears when she was only 18 months. Ever since then, with proper nutrition, exercise, and only the top rated children’s nutritional supplement she hasn’t had any significant health problems. Needless to say, I found it very upsetting to see my little angel in obvious pain and misery. I wanted to cry with her.

Being the parent that I want to be to my overactive kiddo has been a learning curve of trial and error for me. My first words of advice to parents with Fibromyalgia are to talk to your child. While they may not fully understand the disease you may be surprised at what they can comprehend. My daughter can’t tell her friends that I have an invisible disease that has no cure, but she does understand that “Mommy has booboos and she gets tired”. I used to sit and cry because I wanted to run and play with my daughter and I truly believed that I was going to miss my daughter’s life because I was sick. I felt robbed. And then I realized that I needed to change the way I looked at “participating” in her life.

My child understands that I can’t always do everything with her physically that I want to do, but she also knows that I am going to be there to encourage her every step of the way. I play with her when I am feeling well, take her to the museum, play in the park, and splash at the water park – that way when I am struggling and can’t do as much as I would like we can talk about the fun we did have and plan our next adventure! We read together, play games, and learn new skills when I am hurting too much to run and play. I make sure that I am there for her regardless of how I am feeling and she knows this.

I know that it is depressing, devastating, and frustrating to not have the same energy levels or abilities as “other parents” but my encouragement is to not dwell on what you “can’t” do but rather focus on and celebrate what you CAN do. You have a unique gift that will allow you to help your child to recognize that everyone, healthy or not, has something to contribute and should be respected regardless of their lot in life. Yes, my child is growing up understanding the disease and it would be harder for older children to accept right away, but I truly feel that to be open with the young ones is important.

My first contact with an adult with Fibromyalgia was when I was only 12-14 year old and because Fibro was not well known then and we kids weren’t told that my god-mother was fighting a sickness, I remember thinking that she was being whiney and trying to get attention (I am so sorry – I could not have been more wrong). I feel though, that if someone had just tried to explain to me that it wasn’t “just in her head”, that something was making her sick, I would have been more understanding of her situation and might have had a better understanding when I started to experience the same problems I had seen in her. This is also why I think that we as adults should be more open about the disease, and the way it makes us feel, to our children. Explaining the details of brain fog, depression, and muscle spasms might be a bit much, but letting them know that you have a pain in your arms and it makes you sad that that you can’t play all the fun games you want to, seems to be enough for at least young children to start with.

Don’t let your Fibromyalgia take away all the beautiful experiences that life with children has to offer. Find ways to enjoy their favorite activities in a manner that won’t trigger a flare and bear in mind that Moderation is the name of the game with Fibro. Children are a blessing. Let them be your eyes to the simple pleasures of life and revel in your little victories and let trivial matters be. Teach your children to be open-minded and understanding, to see and understand the pain of others, and to be strong in the face of adversity as these are things that they too will encounter as they grow. Our children emulate us. We have a unique gift – use it to make them stronger.

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