My niece Dani is thirteen years old. I have been living with the symptoms of Fibromyalgia almost every day of her life. This is the only way she knows me. With the guidance of her mother and a naturally compassionate heart, she has always been very loving and even nurturing towards me. We have a great relationship and I am so proud of the young woman she is becoming. I love spending time with her and have her at my house often. She sees firsthand the difference between a “good” and a “bad” day. She is with me today and it gave me the idea to interview her for my blog. I thought you might be interested in her perception of Fibromyalgia. I know I am!
You were just an infant the day I had my accident that eventually developed into Fibromyalgia. What is one of your earliest memories of having an aunt with Fibromyalgia?
I remember that you were not always able to pick me up so much or do things together like I did with other people in the family, also I remember when we would go to places like amusement parks or Tustin Tiller Days you didn’t always go on the rides with me and C.J. (C.J. is her older brother/my nephew)
Your mom has always been very caring and compassionate about my health issues. Do you remember any advice or information she gave you about Fibromyalgia?
Yes, she always would tell me, and still does, “your auntie isn’t having such a good day so don’t be too hyper or be too much of a bug.” and that always made me know that you were not feeling too well and I understood that it was your Fibromyalgia.
Even when I am not feeling well, we always manage to have a lot of fun together. What is one of your favorite memories of a time we spent together when I was not feeling well.
My favorite day together over all, and you were not feeling well was when we went to the beach and fed the squirrels and then went to Cabo Grill and met Bam Margera and Tony Hawk.
That was a good day! The very next day we went to the beach again and got caught in a rip-tide. It was very scary for both of us, but I hated not being strong enough to rescue you. Thank goodness we were both safe. You spent a lot of time with me last summer. How did it affect you when I was not feeling well?
I always knew when you weren’t feeling well, it would upset me sometime because I knew that we weren’t going to be spending so much time together or we wouldn’t do much or go places and it was summer so I wanted to but I always understood that when you don’t feel well that you say no to something like the beach and I would know that means no.
So on the days when I was not up for going to the beach and we stayed home we still managed to spend quality time together. What would you say is your favorite way to spend time with me when I am having a “bad” day?
I like it when we just sit around and watch tv but my FAVORITE thing is poker=] (I taught Dani to play poker several years ago, and she is a shark! If you sit down to play with her, expect to lose all your money.)
If you could use just one word to describe Fibromyalgia what would it be?
hmmmm…. painful
What advice would you give to a friend or classmate with a loved one with Fibromyalgia?
I would first of all tell them that I have an auntie with Fibromyalgia and I would tell them its a disease that controls your body and sometimes takes time out of your life because you are so sore from doing something the day before and I would tell them that whoever it is that has Fibromalgia wouldn’t be able to do the things they used to be able to do and I would explain to them some examples that happened between us and the family concerning your condition.
Do you think we would be closer or that I could love you any more if I had never been diagnosed with Fibromyalgia?
NO!!! I could never ask for anymore of your love because I know that you love me a lot and we are already so close I don’t think we could get any closer to each other. I love you so much and you are my favorite auntie and the best auntie a niece could EVER have and just the time I spend with you and the love we share is enough for me=]
How much of your participation in this interview had to do with the $20 I promised you?
Hahahaha well you just told me right now so I was just doing this because you asked me to and because I think it was awesome to do something like this. I don’t need money to tell you how I feel about you and your condition and I love you so much you don’t need to give me money this was something for fun.
You are a wise and loving niece Dani. I am a lucky and proud Auntie!
WOW!!! That was just awesome! Of course I am sitting here crying, happy and proud tears. That was a great idea for you to interview your little Peanut. She really does get it and she cares. She is right she has the best Auntie ever. You have always been a constant in her life and such an incrediable role model. She is very much like you! Of course she is the best at Poker because you taught her how to win. I am very proud of both of my Dani’s. LOVE YOU GUYS!!!
I have also always been proud of my niece Dani for how understanding she has been over the years of my Baby’s daily pains. It’s not easy for a young kid to be selfless but Dani you have been a great niece and supportive and loving. My Sis (The Big Sis) has a lot to be proud of in her little Dani! — When she’s not making trouble 😉
Okay, I liked Dani already and then I saw thew picture of her with Bam and Tony! How cool is THAT??? I am soo envious and so is my son. We have watched all the shows. How is Cabo grill too? We have never eaten there. great interview and what a cutie!
thanx auntie for letting me do this with you it was fun=]
love you
Your niece is loving and sweet. Having you as an aunt has taught her about compassion and given her an understanding of invisible illnesses. She is blessed to have you as you are to have her in your life.
Dani, you are wise beyond your years! I call my daughter Peanut too. I know you’ve made your aunt proud already. Keep it up!
You have one amazing niece right there. And it seems she shares your ability to make me cry (in a good way). Great interview!
This interview was such a great idea and what a special relationship the two of you have. I am really wanting to share this with my niece because I am not always sure if she knows that I have fibromyalgia. I don’t know if it is my own doing or the feeling within the family that there is a “stigma” about it that we don’t seem to talk much in regards to the actual diagnosis in my family. Often people will ask if I am not feeling well, or ask what is wrong, and I feel the need to explain something in particular … this is interesting. Such a reminder of how people so often don’t “get it”, but your niece has a great grasp on it and is a very special girl, just like her auntie!
Thanks Jasmine! I know I am fortunate to have her in my life, but even I was surprised at her depth of understanding. This was a good exercise for both of us. If she knew she made you cry she would totally give you a hug!
What a way to start my morning. Reading this was just so beautiful since you are both so special to me (or I should say special to us). Uncle Dan is going to sit down and read this now also. We love you.
i was showing this blog to my friend dakotaand telling her about your condition and she stopped me and told me that her mother also has fibromyalgia and i got excited and wanted to tell you(:
Well I look forward to meeting your friend Dakota. If she is half as sweet and compassionate as you are Peanut, then her mother is very fortunate.
she’s a great girl(:
but she doesnt live with her mom:(
Now that I’ve dried my eye’s . I just want to say your neice and you are beautiful people!! It’s made me want to diccuss my fibro with my 18 yr old Daughter, She has lived with it for 9 yrs. She handled it very well until She became a teenager at 15 She ran away and we are just now back in touch. I just texted her and she said it was one of the reasons she ran away, and that’s O.K. we need to dicuss it! After my I lost total use of my hands for 6 months when she was about Dani’s age she would bath me and feed me at the time no one knew why it happened until yrs later,She also had to deal with my back problems that started the whole thing I had to have Back surgery when she was 15 and it was too much for her. At the time I thought if I did’nt talk about it it did’nt exist! I wish I had known to do what you did face it head on !! I beleive both of you just gave all of us sufferers of Fibro a very special gift, God bless you and your family!! Rebecca
Rebecca, I am so please this post opened the door for you to reach out to your daughter. It sounds like there are some very deep wounds there, but by starting the conversation you can begin to heal them. You both did your best in the moment and have learned a lot along the way. There is no right or wrong way to handle chronic illness. We all make mistakes, often shutting out the ones who love us and can help us the most. I hope you and your daughter can come together and heal some old wounds. Love and forgive yourself and each other. My best to you!