Hi everybody! Today I’ve invited my seven year old daughter to talk about what her life is like since I have fibromyalgia. I’m going to ask her questions and then type her answers.
Q: What do you feel like when your mom is in pain?
A: Angry, sad. Not angry at her, angry at the fibro.
Q: What is the biggest change in your life since your mom got diagnosed?
A: I was surprised and sad when she got diagnosed. I knew there would be a change in life for me. That change is that I never got to spend as much time doing fun stuff with her. It’s blown me off my original track because it made a total change in life for me. I was surprised that my mom got diagnosed with it, because she looks totally healthy, but then she explained to me that it’s an invisible disease and then I wondered how it could be a disease because no one can see it. Then she told me she tries not to show the pain. Now I am one year older and I’ve gotten used to it but it still makes me sad.
Q: What’s your favorite thing you can do with your mom that she’s still able to do?
A: Go out to stores and look out, especially in the art sections. I love art and she always tells me how good I am at it and buys me lots of supplies.
Q: What is your least favorite part of your mom having fibro?
A: She has to lay in bed a lot, so I can’t play with her as much as I want to.
Q: Does your mom do anything to try to make up for the fact she’s in bed so much?
A: Yes. She invites me up to her room to watch TV and she’s bought us a ton of adult coloring books, plus colored pencils, markers, and gel pens. We like coloring together.
Q: How does it make you feel if you do something special together?
A: Really good, but I still know she has fibro so that makes it so it can’t be perfect.
Q: What are good clues that tell you whether your mom is feeling well or bad?
A: Well – My mom doesn’t have eyes that are half-closed. Also, she’s not in bed.
Bad – When she tells me she has to go to sleep – that she doesn’t have any choice. Also, when she takes a bath with epsom salts.
Q: Do you sometimes see your mom crashing before she sees it or you know she’s pushing and will be flaring later?
A: Yes, because she has to sit more, or because she falls asleep while we’re coloring.
Q: What does it feel like when mom isn’t available because she’s resting or flaring?
A: I feel sad, but not as bad as I used to feel because I’m used to it now. Plus, sometimes I spend the day with my dad and that’s usually cool.
Q: Are there any things you know your mother shouldn’t do and so you try to help?
A: Sometimes I see something that has to be done and I tell her I’ll help or I’ll do it for her.
Q: If you could take away all her pain and tiredness for one day, what would you want to do?
A: As much as we could do. Go get ice cream, go to the playground, take a bike ride, just be with her without worrying.
Q: Do you feel like you’re missing out on anything because your mom has fibro?
A: Not really. I know I’m still very lucky and my parents love me a lot.
That’s about it for the small person. It’s time for bed! If you have any questions for her, leave them in the comments and I’ll show them to her.