The Battle Between Mind and Body When You Have a Chronic Illness


So many times I have heard the saying, “Life is about balance.” How very true this is, and how much truer it becomes when life is affected by chronic illness.

I have always been a “do-er” with a self-motivated and driven personality. My motto was, and always has been, “If you don’t try you will never know.” I have always been a very goal-driven and independent person, setting very high standards for myself. In my mind, I had no limits. If there was something I wanted to do, I became determined and made every effort to make it happen. If someone told me I couldn’t do something, it only fueled my fire to achieve the impossible even more.

 

When I was diagnosed with complex regional pain syndrome (CRPS) at 16 years old, however, my high-achieving world suddenly came to a screeching halt. My ability to walk was taken away, my independence and physical ability had become compromised. Mentally, my goals hadn’t changed. I was still driven and wanted to do big things with my life. But physically, I felt incapable and held back.

Unfortunately, with physical pain comes physical limitations. There are things I can no longer do now, or have much more difficulty with, that I would have been able to do with ease only eight years ago before my diagnosis. To me, it is the feeling of being “stuck.” The feeling of having a young, goal-driven mind and a dreaming heart trapped in an old, malfunctioning body. I have limitations and restrictions other people my age don’t have with things most don’t even need to think twice about.

Having chronic illness, sometimes my body makes my decisions for me. There are some days when I don’t feel safe to drive on my own due to the overwhelming pain in my legs. Chronic migraines often leave me bed-bound for the entire day, and even several days in a row. I have the need to bring a lumbar support cushion everywhere I go because of the aching pain and uncomfortable leads in my spine. Brain fog and exhaustion creep over me like a shadow when I need to concentrate or focus on a task. These are all obstacles people like me with chronic illnesses face on a daily basis.

Unfortunately, these are things we have to take into account in both daily life and future planning. Whether it be a career, our jobs, our social life, spending time with friends or family or even running a simple errand. Energy is hard to come by and very hard, if not impossible, to get back once we’ve lost it, so we have to plan our day and activities accordingly. I’ll admit this is an area I have struggled with ever since my diagnosis eight years ago. Finding the balance between what I am mentally capable of and what I am physically limited to. Feeling a longing in my heart for something I know might never happen. It is a heartbreaking feeling. It is the feeling of defeat.

Finding this balance and applying it to daily life is a fine skill I have not yet mastered. My body fights me, but it doesn’t always win. I have pushed through and accomplished many things I never thought would be possible with chronic illness, but I also have had to learn to compromise with myself. I have had to learn it is OK to rest, it is OK to cut myself a break when I need it. I have had to learn to say “no.” I’ve had to learn to say no to things I really wanted to do, to places I really wanted to go and to people I really wanted to see and spend time with. Not always by choice.

Sometimes I know better – that I need to stay home and rest for my own good, but I don’t always listen to that small voice. I don’t like when I hear that voice in the back of my mind. I disagree with it. It makes me angry. It makes me feel frustrated that I can’t keep up with everyone else. It makes me feel jealous of other people who have the freedom to follow their dreams, to do what they want whenever they want without any limitations. Because of this I don’t always listen to that small voice and end up paying the consequences.

The girl people see out and about in the spur of the moment is very different from the girl who can’t sleep that same night from the pain flare she put herself into, and the entire next day she spends trying to recuperate. I know now I have these limitations, but I still struggle to accept it. This is not who I am, and I am not always able to accept it. This has been the most difficult thing for me to learn, and I am still trying to enforce this practice of balance and acceptance in my own life.

It’s one of those things that is easier said than done. I like to be available, but sometimes I spread myself too thin. I like to have fun and be active, but sometimes I don’t get enough rest to keep going. I have dreams in my heart and goals in my mind that I want to accomplish in life, but sometimes I need to keep an eye on what is realistic for my circumstances and limitations.

Balancing life with chronic illness is about learning to compromise with yourself. It’s like a dance. A dance between mind and body. Learning your limitations but taking advantage of and being thankful for what you are able do. Realizing your dreams but being willing to explore other options and compromise. Unfortunately, we don’t get the privilege to choose our dance partner, and we have no say over the hand that was dealt to us in life. We may not get along very often (ever), but we can choose to take what we have and make the best of it.

When watching two people dance, there is a flow and a chemistry that is eluded. We don’t know the true relationship between the two people, we just see the dance. Just like dance and living with a chronic illness, balance can make the dance look beautiful. You don’t see the struggle, you only see the beauty.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Orla.

TOPICS
JOIN THE CONVERSATION

Related to Complex Regional Pain Syndrome

black and white photo of a person walking in wide landscape

I Am a Superhero Battling the Villain of Chronic Pain

I am a hero, dueling a villain. Each day I wake up and interface with my inner computer to analyze my armor. Where are the weak points today? How can I log the raggedy bits, the parts burning away and the holes piercing my defenses? Every night before bed, I ask my interface to record [...]
The writer in a wheelchair, and two of her friends.

10 Things I Wish I Knew When I Was Diagnosed With CRPS

I was 17 years old when I was thrown into the world of chronic pain. I’ve  been fighting this pain for five years now and have learned a lot. Everyday isn’t perfect. I still have days where the pain is too much. However, I’ve learned that I am so much more than my pain. I am [...]
A pain scale, ranging from one to 10, and smiley faces to upset faces.

Why I Lie About My Pain Level at My Doctor’s Appointments

In 1971, two individuals from McGill University developed the McGill Pain Questionnaire. It includes questions about the type and quality of pain that an individual may be experiencing. If you have ever gone to seek medical care for any type of pain, whether acute (sudden and short-lived) or chronic (lasting longer than six months) you [...]
drawing of a woman on an orange background

Trying to Keep Track of Your Symptoms When You Have Multiple Illnesses

One chronic illness is bad enough but oftentimes, having one chronic illness means you have at least one more. As for me, I live with multiple chronic illnesses and it’s hard to keep them straight. I can tell you the name, description, cause, symptoms and treatment of each one so I keep them straight that [...]