When Life With Chronic Pain Feels Like My World Has Stopped Turning

Being labeled as “disabled” really changed my world. It gave me a new perspective I never thought I would have at just 22 years old. I have never accepted my pain as my life. I still can’t, even almost eight years later. Putting into words how I am disabled because of chronic pain wrecks the most delicate part of my life: my heart.

I was just 5 years old when my parent’s world stopped turning, because I had been diagnosed with rhabdomyosarcoma. I have seen the worlds of others stop turning, but I never thought my world would cease.

I have what is most commonly known as complex regional pain syndrome (CRPS) from my waist down, although when I was diagnosed, it was in the time when some doctors only knew it by reflex sympathetic dystrophy (RSD). Telling people that I had something that would never be gone, or never be better enough for me to remain active, is one of the hardest things I have to do, every single day. The curiosity of others can really darken my days, even though most people ask out of kindness. When people ask, I just have to pretend I am fine. There’s a mask I wear each day. Sometimes the pain is so severe my mask is unable to hide my pain.

Getting married to the love of my life in 2015 was a complete joy. It was the moment in my life when my world started turning again. I knew I had a man who I could be honest with, which is sometimes better than any medication I have to take. He never makes me feel bad because I have to rest, or have to take extra Tylenol to make it through. He builds me up, loves me through my pain, and most important on my list, he loves me wholly even with my RSD.

Getting married at 28 was a blessing, by far. I waited to find a man who would love all of me. My RSD loves to get in the way of my life, even to this day. I try to fight it, to keep winning over my pain, but with each day, it gets harder and harder. Most days while the kids are at school and my husband is at work, I am home crying or staying as still as possible to try to get rid of the pain. On the days I feel “good,” I am home cleaning or doing laundry. The problem with RSD is that when you have a low pain day, you can function higher than you normally can. On those days I overdo it. On those days, it is without fail that I set myself back another 10 steps. It means another three days of sleeping with extra meds while the house is quiet, another Epsom salt bath (sometimes four in a single day), or another day of not being able to breathe because of the astronomical pain.

Along with RSD, I deal with severe anxiety and depression. No one told me at age 22 that I would get diagnosed with anxiety and depression along with RSD. Each day, my world can either turn normally, slowly, or not at all. Each day I wake up covered with darkness until I know how my world will turn. Each day I struggle with chronic pain, severe anxiety, and depression. Each day I struggle to call this my life. Each day I pray my world will at least turn a little, because when my world stops turning, my heart suffers the most.

There are many pieces of advice out on the internet, and people with chronic pain will give you all kinds of advice. I’ve even had a pain management doctor give me advice. The thing I learned is that some of the advice works for me, and some of it doesn’t. Being able to try new things, or knowing that some advice won’t fit my life is critical. No one will know your body better than you do! It is imperative to know what there is to try, but to also use your own body as a guide! We all have chronic pain; however, each body reacts differently.

Coping with chronic pain, even seven-and-a-half years later, is a daily task. Some days are easier, but some days are extremely hard. I’ve found that I hold tightly to the things that make me feel better. I have two dogs that always know when my pain is high, so they stay extra close and cuddle with me. I’ve found that coloring keeps my mind occupied and can help redirect my mind from focusing on the pain. I have a wonderful husband who knows there are things I need to do each day, sometimes when I’m home alone.  Coping is harder some days than others, but it also keeps me going. I don’t take my life day by day. I have to take my life minute by minute. I keep telling myself that if I just made it through that last minute, I can make it through another minute. There’s a lot of minutes each day, but I know I need to break it down so I can manage to cope.

When I lost my ability to dance two years ago, I thought my world ended. However, just recently, I have learned other things I can physically do to help me stay as active as possible. There is no end in sight with chronic pain, but I choose to stay strong, focus on the things I can do, and find what works for me. I have lost a lot with chronic pain, but I have gained a lot because of it.

I challenge each person I know to be kind to strangers, because you never know what that person sees, feels or faces. The monsters I face make my world a completely different place than I ever imagined my world would be at 29 years old. If we all grow together in life, we can make sure the worlds of all will keep turning, no matter what we all face.

I just want our worlds to turn each day.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.