When Everything Hurts

Pain is the last thing I am conscious of as I fall asleep each night and the first thing to greet me every morning. It’s a burning, tingling and numbing neurological pain. It has been my constant companion these past 20 years. Although it varies in intensity, it never, ever disappears. When I have a flare-up, which also produces severe weakness on the right side of my body and an overwhelming fatigue, the pain becomes excruciating.

My first flare-up occurred soon after the birth of my third child. At first, doctors thought it might be a stroke. Then they ruled out multiple sclerosis and other neurological diseases. To this day, my family doctor calls it “Neurological Syndrome X.”

In the first years, I struggled with discouragement, frustration, and even depression. The simplest daily tasks turned into impossible challenges. Tying my shoes, taking a shower, getting dressed, making supper, walking to the park – I couldn’t do any of it. I enjoyed being able to accomplish my job and please those I love. I felt like I was continually disappointing those around me.

So often, I found myself crying alone in my room because once again, I had to tell my loved ones “I cannot do that today. I am so sorry.” I wanted so desperately to be healthy enough to do what I wanted each day. But every time I tried to push my body to do more, the symptoms would get worse, a lot worse. Desperate to escape this situation, I begged God more to heal me, but he didn’t.

In those first years, many people around me tried to help by offering unsolicited advice. Some told me I was sick because I wasn’t taking supplements or trying the unconventional treatments they were selling. Others told me that it was all in my head and that I just had to suck it up and believe I was strong and healthy and all would be well. Still others were absolutely sure that I was sick because of a lack of faith or some horrible secret sin. I know they all meant well, but their attitudes and words hurt me so deeply. I felt alone, judged, and misunderstood.

Every time I tried to push my body to do more, the symptoms would get worse, a lot worse.

For seven years I went from relapse to relapse without relief. Then, one day, my eldest daughter was diagnosed with celiac disease. She had to switch to a gluten-free diet and I decided to switch with her so she wouldn’t feel alone. Within three days of eliminating gluten from my diet, I saw my fatigue begin to lift and my right side regain its strength. The pain, however, never went away.

In the 13 years following that crucial discovery, my activity level increased greatly. I only had a few relapses, nearly all due to contact with gluten. I still struggled with daily pain, but at a manageable level. I was even able to go back to work part-time as a writer and translator and begin doing regular exercise again.

But in the last six months, I’ve had one relapse after another. I am slowly getting worse. Symptoms are beginning to appear on the left side of my body as well as my right. My eyesight is going because the muscles of my right eye have grown weak. I can only work at the computer in very short spurts. Reading is an exhausting chore rather than the delight it has always been. I’m back to constant fatigue, pain, and weakness.

I feel so powerless against this relentless and mysterious enemy. I thought that I could control my disease by avoiding gluten, but I now know that other things can trigger relapses. Will I be able to figure out what each of those triggers are and find a way to make it stop? Will I be able to get better? I dread the thought of becoming more and more trapped in this unresponsive body. I thought those fears were all behind me, and yet here I am, right back to where I was 20 years ago. I know that the solution to worrying is to live fully in the present, focusing on what I can do rather than what I can't, but it’s hard to avoid thinking about the future.

I know what it is like to face daily pain and weakness, what it is like to lose all hope of getting better. If you are going through chronic pain or illness, know you are not alone. Please feel free to write in and talk about it with us. Sometimes, when we are hurting and feeling all alone, what we need most is a loving, compassionate, caring presence… someone who will simply listen and understand. I know how much that helps me. I know it could also help you too.