Being a survivor of fibromyalgia is not enough for me. Surviving implies barely making it; fighting to be here; a lack of fulfillment; feeling powerless. The meaning is endless for me, but it’s all the same – negative and not what I want. I want will change. It means being more than merely surviving. To thrive, for me, means to be making it and then some leftover; no longer fighting; being fulfilled; feeling powerFUL. Bottom line: I want to thrive in my family life and I want to have fibromyalgia; I don’t want fibromyalgia to have me. I want to be a fibromyalgia thriver.
My First Encounter with Fibromyalgia
I first started experiencing fibromyalgia symptoms in 2006 while still serving in the Navy and shortly after the birth of my first son. Each day I had all-over body pain, extreme fatigue, tender muscles, painful joints, and frequent upset stomach. When the symptoms would not lessen after a few months, I turned to my medical providers for help. I was quickly dismissed and flat out told I was experiencing the normal aches and pains of a first-time mom and to “suck it up”.
For the next year or so, I continued to see various medical providers in hopes of finding the source of my issues. And with each visit, I was told the same thing – it was all normal of motherhood. This made me feel weak, less than, and ashamed. I cried myself to sleep each night with these thoughts in my head. This continued for six years.
All of the symptoms impacted me on a daily basis to various degrees. I couldn’t play with my young children due to the constant chronic pain and extreme fatigue. Frequent headaches and upset stomachs confined me to the house. The pain levels had me uncomfortable, and irritated, and prevented me from getting the sleep my body needed. All of these issues – and their unpredictable nature – led to social isolation deepening my depression and anxiety.
Finally – an Answer and Hope
I reached my breaking point one afternoon in December 2012. I had blacked out from high pain levels and woke to find myself on my bedroom floor. My body was riddled with pain, inflammation, and fatigue. My depression had deepened to the point of alienating my husband and four young children. I knew this had to end. I could no longer go on in this matter.
The next week I visited a new physician and broke down with emotions in her office. Through sobs, I explained to her that I could no longer live with whatever was happening to me. She immediately suspected fibromyalgia and told me my symptoms were normal – for fibromyalgia and NOT motherhood. She ran various tests to confirm her suspicion and I was then diagnosed with fibromyalgia.
That day, I was given hope again. I had no idea what was going to happen or how I was going to heal, but knowing the cause of my symptoms gave me hope to get better. She gave me a book about fibromyalgia which walked me through the first days, weeks, and months of the condition. My brain soaked up all the information and needed more.
Trial and Error: Finding a Pain Management Plan
We tried an antidepressant for depression and pain, but my body did not respond well to it. After walking around like a zombie for two days, I was hit with a massive migraine that left me bedbound for an additional two days. It took me days to recover from it, and I made the decision to not take an antidepressant for my symptoms, but to use alternative treatments instead.
With limited literature on fibromyalgia, I turned to well-known fibromyalgia organizations for resources and help in regard to treatment, healing, and life with fibromyalgia. Each avenue proved to be a dead end. The organizations failed to return my constant emails and Facebook messages. I even donated money to one organization in hopes of getting a response and still got no response.
Knowing I wasn’t the only parent struggling with fibromyalgia while raising a family, I scoured the internet looking for guidance from other parents. After turning up empty-handed, I decided to start sharing my own experiences through a blog called it Being Fibro Mom.
I didn’t know where I would go with my blog, but I knew I wanted other parents to know they were not alone in their struggles. And with any luck, we would figure it out together. I started calling us a group of parents living with fibromyalgia fibro parents and created an online community for us to share our stories, and what we have found helpful, and to support one another during difficult times.
I’m a Fibromyalgia Thriver!
Do you know how some say that once you reach rock bottom the only way to go is up? Well, that was my rock bottom. I was knocked down by my pain and I was done living with it. I was supposed to be managing the pain, but instead, the pain was managing me. I had learned how to survive moment to moment, and that was great, but I wasn’t happy. I wasn’t fully embracing my life as it was and I certainly wasn’t okay with where I was.
I didn’t want to merely ‘survive’ and go through the motions of life. I wanted to feel life; feel fulfilled; happy to get out of bed each day with the excited anticipation of the endless possibilities of life. I had too much to live for, and the bare minimum wasn’t cutting it for me. That is the day I switched my mindset from surviving to thriving. Thriving meant flourishing, growing, and, most importantly, not just surviving. THAT is where I wanted to be. And it was all up to me. How was I going to do that?
I know I am not the only mom living with chronic conditions, and this is how “Being Fibro Mom” came about. My mission is to let all parents living with chronic pain not be ashamed of their condition as I once was and to show them that they don’t have to just survive their everyday life, but thrive in it! My hope is that all of my posts are informative and filled with resources about fibromyalgia and chronic pain, but even more so to show how you can switch from surviving to thriving. And if there is an area where I’m lacking show that, please let me know and I’ll share more.
Visit more blogs about chronic illness parenting.
Updated May 2019
Here it is sometime later, and while I still live with fibromyalgia and chronic pain, I AM thriving in my family life. I still have my bad days, but the good days far outnumber the bad ones. Every aspect of my life involves my conditions and there isn’t one day that goes by that I’m not reminded of it. But that’s okay – I embrace them because they are a part of me and I love me – the good and not-so-good.
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Wow Brandi – what a powerful story. It is so tragic the damage that dismissal can do – I am glad you finally got recognition and also the help required to thrive once more. And what a lovely family you have… xx Thanks for sharing.
Thank you so much for helping raise awareness by participating in the #May12BlogBomb.
Over 90 posts resulted, and links to the others can be found here: https://sallyjustme.blogspot.co.uk/2014/05/May12BlogBombLinks.html
Perhaps we’ll try this all again next year!
Thank you for your kind words, and thank you for having me at the Blog Bomb. Yes, let’s definitely do it again next year!
🙂
What a horrific story but great so see the smiles and the wonderful family you have now. xx
Yes, it is tragic, but it has a wonderful turn around!
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Brandi- thank you for sharing your powerful story of not only enduring such a debilitating disease, but THRIVING through it. I can’t imagine how hard that must have been prior to the diagnosis with an infant and your hubs over seas.
You are one fiercely strong woman, and I’m guessing your mother is too!!
Thank you, and yes, she is! I’m blessed to have her strength.
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I didn’t know you started a foundation? That’s so awesome!
Yes, I did! It was a lot of fun when we were more active with it. We aren’t as active with it now because we funded all events, paper materials, etc out of our own pocket, and it was getting a little expense to keep up with it. We hope to start it up again soon.
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Thanks Brandi, why is that when we know others are experiencing trials similar to ours that it helps? I mean, it’s not like it will alleviate one or the others’ suffering, but for some inexplicable reason it makes it better somehow when we know we are not alone. I was thinking my next post would be a ‘my story’ and this pretty much cemented it. So thankful for ‘Fibro Sisters’ like you! You are all a blessing to me 🙂
Because we share one another’s burdens, making the journey lighter and brighter just as God designed.
I love how you showed us your journey on pictures and that your outer glow matches your inner glow at last. You are an inspiration! Thanks for sharing with Small Victories Sunday linkup. Pinned to our linkup board.
Thank you, Tanya!
I’m a mom of four as well (7 year old and five year old triplets). I’ve had fibro ever since trying to recover from a bad car accident in 2015. I appreciate you sharing your story so openly and reminding me I’m not alone.
You’re very welcome! How awful about your car accident. My mom also had a car accident which triggered fibromyalgia, and it was awful finding her relief (this happened back in the 90s when fibromyalgia was first ‘discovered’). If there is any questions or way to help you, please do not hesitate to contact me! Thank you for reading my story!