My Mom has Fibromyalgia. Actually, yes my mom does, too, but this isn’t about her. This is the story about a 10-year-old boy who saw someone struggling and stopped to ask the hard questions.
Sometime its the littlest ones in our life that take your breath away with their love, compassion, and forgiveness. Tiffany Case follows my blog on Facebook, and she shared this story with me. Her sweet 10-year-old son had to write a paper for school about someone he knew that has to deal with daily struggles. First off, I want to thank this teacher for even thinking to have this assignment. I think it’s so important that children learn early on that we will face struggles in life, and that it’s how we face them that’s important.
Dylan is obviously an amazing child. He looked around his world and he chose to write his paper on his mom, Tiffany, who suffers from Fibromyalgia. Tiffany said that this was the first time she’d really had anyone ask such imploring questions about her illness, and sadly she doubts she ever will again. As she said, “people don’t like to talk about things that make them uncomfortable”, but children haven’t quite learned that filter yet, and we could really learn a lot from them.
For Tiffany this was no easy conversation. “What do I tell my baby boy who I have disappointed numerous times from being sick or in pain. That was such a hard conversation to have with someone so young. I had to choose the right words to try and make my 10 year old understand something that most adults, nor science, can even understand.
I began telling my story of pain and loss over the last 13 years, through tears I didnt want him to see. I told him what my life will mostly always be like and of the hopes and dreams I have for my life. It took me nearly an hour to minimally explain to him the harsh reality that this invisible illness has dealt. He listened the entire time, asked questions, and proceeded to tell me I was the best Mama in the world. His easy forgiveness and compassion towards me and others is completely amazing. Oh how I love that boy!!!”
Here is the letter:
Struggles by Dylan Shaw
My struggles paper is going to be about my mom and how she deals with her Fibromyalgia, my mom calls it Fibro. My mom had is since she was 20 and [is] now 33. “People think you are lazy and crazy. It takes a toll on my family and it causes pain in every part of my body to where it is so bad my hair and toenails hurt.” The worst thing about Fibro is there is no cure for it.
People with Fibro will live with it to the day they die. It took my mom’s dreams away from her and took her job she loved so much as a nurse. 9 out of 10 times my mom is not feeling good. Other than pain, the other two things are the complete lack of energy and the misunderstanding of others. My mom does not get to spend time with her family and that really makes her sad. If she gets sick, it takes a while for her to get better. But, at the end of the day, I will always love my mom, and she has made it 13 years with Fibro.
Chronic pain is increasingly rampant today.
Yet, chronic pain and chronic illnesses are often invisible. In many cases there are no casts, visible rashes or runny nose involved. Chronic pain sufferers often appear “normal,” perhaps only a bit more fragile or sad than average. I suffered from chronic headaches for four-and-a-half years and from chronic hip pain for two-and-a-half years.
Often I looked depressed, uninterested and angry, when I was simply in pain. There were many days I couldn’t get out of bed. Following a conversation became difficult at times.
I lost a job due to my pain. I canceled plans and ignored friends. I felt misunderstood and alone. I was suffering. I know the answer was out there and eventually I healed myself.
Yet at the time I wanted to scream from the top of my lungs all the things all chronic pain sufferers want you to know
1. Just because you can’t see it, it doesn’t mean I am not in pain.
2. It’s not all in my head.
3. It is not just the flu. It won’t just go away in a week.
4. Please, don’t ever say, “Just don’t think about it.” Being in constant pain this is impossible.
5. Hugs can do magic. So are nice messages. I need to know you are here for me.
6. Thank you for sharing the “magical cure” that you’ve read about online. Trust me, I’ve heard about it, and if it was any relevant, I have tried it.
7. I am trying extremely hard to live a normal life.
8. I try my darn best not to cancel plans and I would never cancel plans, if I had a choice.
9. I can’t just snap out of it.
10. Some days are better, some days are worse. Some days I may even feel close to normal, other days I can’t even get out of bed.
11. I do care about you. I want to know about your life and dreams. I want you to be happy and healthy.
12. My chronic pain is different from the other people’s chronic pain. All illnesses and pain symptoms are unique. Our experiences may differ, but we are all in pain and can relate to one another.
13. Please, don’t try to convince me to have drink and to “live a little.” All I want is to live a little—actually, to live a lot. A drink, however, is the last thing on my mind.
14. If I look all depressed or bored, it means I am actually in tremendous pain and trying my best to appear to be happy and normal.
15. I can’t really explain how chronic pain feels. Yet, I can’t say, “You will know once you have it” because I would never ever want anyone to feel so much suffering.
16. I need a lot of sleep. But sleeping can be difficult with so much pain and often still leaves me exhausted.
17. Just because I have chronic pain it doesn’t mean that I know how to manage it or to live with it.
18. Sometimes it feels like I am in a prison, living someone else’s life.
19. I still have interests, passions, goals and dreams.
20. I don’t want you to forget about me. I don’t want you to give up on me.
The daughter of a fibromyalgia sufferer posted a poem to our Facebook page that touched us and many of those in our online community. We hope that you are inspired by it as much as we are.
Everything that once was changed in the blink of an eye,
Why my mom, just why.
Its an incurable disease that won’t go away,
living with her in our home day after day.
A disease caused by overactive nerves,
Causing destruction as it serves.
Not a day goes by without pain,
Living with fibromyalgia puts all other priorities in the back lane.
Some days we hangout or go to the mall,
But other days we stay home and roll the ball.
One day she’ll be fine not a pain in her head,
The next day in excruciating pain laying in bed.
Day after day, night after night,
Together as one we fight.
Against fibromyalgia the score is always zero,
My mom, well my mom is my hero.