How I Live Well With Fibromyalgia

I am having a hard time posting this one. A couple months ago, I started a little series that I asked some of my friends to participate in. I had chatted with them through email and text about helping others by sharing our stories. We each talked about hoping to help people see that they are not alone. Life is painful but beautiful. That's the message. On Saturday, Amy and I exchanged messages, and on Sunday, she was gone. Just like that. And I've been holding off this post.

With the permission of her family, I am sharing the words that Amy shared with me a few days before she left this earth. I pray her story helps you.

Growing Through Chronic Pain Well With Fibromyalgia

by Amy Kohl

I was 26 years old with a newborn; exhausted all the time. My body hurt in ways I never knew possible. More than anything, the overwhelming exhaustion was about to take over my life. I was struggling to keep my head above water. I felt like one misstep and I would drown in the pain and exhaustion. Everyone said it was because I was a new mom. Lack of sleep and the constant needs of a newborn is exhausting under the best of circumstances. I knew how I felt. I knew I was progressively getting worse. I knew in my heart there was something more going on with my body.

By the time I gave birth to my second baby at 28, my health was in total decline. I almost died giving birth, I could barely stay awake to care for an 18-month-old and newborn, and there were days my arms just wouldn’t move. I knew this was much more than "new mom exhaustion". It wasn’t normal to have muscle spasms and feel like I had been beat up all the time. During this time, I went through three mattresses and more Ibuprofen than I want to admit. I was on over-the-counter pain killers all the time, to the point my blood was thinning and I was bruised all the time.

By the time I was 30, I was in bed about 20 hours a day. I was barely able to take care of my children or my home–barely surviving. The daily guilt of not being able to play with my kids was almost more than I could take most days. There was a mental fatigue that overwhelmed me dealing with the constant pain. I was a mess. There is no other way to describe my situation than an all-out hot mess. I was defeated, lonely and isolated. I was so weighed down with my symptoms I couldn’t see any hope, or even a different way of living. I was stuck in a depressed, unhealthy state.

Doctors kept saying nothing was wrong with me. I heard it was depression, I just needed to get up, I was faking, and it was all in my head...the accusations that I was lazy hurt the most. Then one day a rheumatologist put a name to the demon that haunted my days:

Fibromyalgia with Chronic Fatigue Syndrome.

It seems weird to say I was excited about hearing the word Fibromyalgia. I finally had the validation that it wasn’t all in my head. I wasn’t lazy. I wasn’t faking. I was SICK. When reality hit that I had an illness, I decided that I needed a plan. My first question was, “Where do I go from here?”. I had to ask myself, “How do I live with a chronic illness with 2 small children?”. Could I even change my circumstances enough to make this doable?

I really tried to be a fun mom and create amazing memories, even though I was sick. I was the mom that bought bubble wrap to dance on so it echoed on the wood floors, we danced in the rain, we would sing loud and off key to our favorite songs, we had glow baths with 30 glow sticks in the tub and the lights out. But I was also the mom who taught her three-year-old how to get water from the fridge dispenser and her five-year-old knew how to microwave chicken nuggets. Some days I could be the mom I wanted to be and some days I was barely there. I knew the barely there days were just part of the package. I just needed to find a way to make those days far and few between.

Then, there were days of massive guilt. I had days where all I could do was cry, grieving over the mom I wanted to be and the mom I had to be. My body had put limits on me and I had almost resigned myself to those limitations. Almost. It would have been easy to throw my hands up and just give in to it all.

Now, I tend to have a Pollyanna-type personality. I knew there had to be a better life for me. I knew I would live with Fibromyalgia, and I had accepted that fact. But would I choose to live defeated, or would I choose to live well? I realized the choice was mine. No, I couldn’t change my circumstances, but I could change my reaction to what life was throwing at me.

Here's the thing about bodies, health, and chronic illness: there isn’t a one size fits all way to deal with everything. I had to make some decisions.

What did I want from life and how would I get it?

Was I brave enough to do the hard things?

Regaining your health isn’t easy by any stretch of the imagination. I started to research how to achieve maximum health with fibromyalgia. I began to walk about 15 minutes a day. That first step was the hardest step of my life. I really didn’t know how I would do it since I was drowning in exhaustion, but I just put one foot in front of the other. I began to look at vitamins and food as a medicine. I began to naturally heal my body from the inside out.

At the time of this writing, I am about 7 years into my health journey. I would like to tell you I have always felt amazing and I eat right every day. The honest truth is, somedays I rock it and others I fail miserably. As a whole, I do feel like a completely different person than I was seven years ago. I work full time. I stay active with my daughters. I try my best to be as healthy as possible.

I have found the main ways for me to live well with a diagnosis I never wanted is first, to stay positive. Because I tend to be a glass half full person by nature, I assumed this part would be easy for me. It wasn’t.

The mind games that pain plays on a person can take a toll on positivity.

Now I keep post it notes of affirmations and Bible verses in places I will see them. I want to keep my mind focused. If I think I can’t, I won’t. The mind is a powerful player in restoring your body.

The next focus for me is health. I do my best to put only good things in my body. Your body is like a car. If you run a car without oil you will lock up the engine. If you run your body on junk, it will respond accordingly. I stay away from a lot of chemicals, cook from scratch and sadly gave up french fries. I knew I had to make some huge changes to reach my goals.

Lastly, I try to make the most of every day. I want to make memories and be present. I want to live now, because I never know when my body will decide it won’t respond to all the vitamins, workouts and healthy food. There are days it doesn’t and I have to be prepared for that. I feel great, but I still have Fibromyalgia. If I am in the moment when I feel good, it is easier to rest when I feel bad. I already know I am living my best life, complete with self-care.

I have had to learn the balance between taking care of myself and being a busy mom. I have learned to release the guilt on days I just can’t do everything. There are days I have a "laundry couch", and my bed isn’t made. There are days I hate the treadmill. And I have learned that’s ok. When you have uncontrollable circumstances learning to roll with the punches is one of the hardest things you will do. It is also, the most necessary thing you will do. I can’t be the person I want to be when I’m stressed out over things out of my control.

I am also a single mom. Staying on top of my game is a lifestyle, not an option. I cannot fail, even though I will. When those failures come, I will lift my head and march forward. It will not be the end, but a learning process to a beginning. Making sure my daughters see a strong woman even when I feel weak is important. Life isn’t always easy, but I have chosen to have a good life regardless of the circumstances. You can too!