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.
These are some of my daughter’s favorite markers for coloring with!
Melissa Keir said:
Very nice post. She’s a wonderful young lady!