Finding the Balance with Chronic Disease

It can get discouraging -- the spectrum of pain and ability (or dis-ability) my health can span in a single day. Yesterday, despite raging back pain, I was able to dress nicely and go to church, chat with friends and draw encouragement from church members who took the time to thank me for my writing and even a family friend / deacon who always notices when I make it to church, and as he is aware of the challenges of my disease, will say to me affirmingly, "Nice to see you vertical!"

It is truly amazing sometimes, the amount of pain I can be in and still appear "normal." Ankylosing Spondylitis, especially if the patient does not use a walker, cane, or wheelchair to get around, and is not yet fused into a curved, stooped position, is truly an invisible illness. I look normal, but inside inflammation rages through my spine and joints and I experience the pain others can't see.

One normal day for others is like a marathon for me. I am so tired and being out and about tires me with systematic efficiency -- draining me of energy and pumping up my pain levels. Something as routine and simple for most people as grocery shopping, can leave me too exhausted to speak, feverish, and in severe pain.

It's really frustrating that people can't understand. It's awful to think that people around me may think I am making this up, faking it, or that my pain is really just some mild aching.

Pre-diagnosis, I enjoyed an outdoor walking routine. Never one to enjoy exercise or athletics, I discovered walking offered many positive benefits: increased energy, decreased stress and anxiety, improved posture. I loved my "artful walks" -- enjoying the skyline, backdrop of pastel sunsets to black tree silhouettes, music in my ears thanks to my MP3 player, fresh air, and the scent of laundry detergent from neighbors doing their laundry. Sometimes I paused to capture one of these images with a camera, or to jot down a snippet of a sentence in a notebook. Inspiration was all around.

I became unable to continue my walks about a year ago -- three months before I was diagnosed. The walks caused a spike in the pain and limping, and elevated my low-grade fevers.

This week I determined to try again. According to Arthritis Today magazine, walking is an excellent form of exercise for arthritis. Walking lubricates the joints, releases pain-fighting chemicals... It sounded great to me.

The first day I walked 1.5 miles, divided into two walks.

It was wonderful! I was back to my old routine. The beautiful afternoon or pre-sunset skies, the fresh air, the drifting laundry scent hovering in my neighborhood right along with a very real sense of hope. I was strong, I would prevail, and I would show Ankylosing Spondylitis who was in control!

The next day I went out again for another 0.75 miles. Not that far. The walk increased my spinal pain, and by the end I had knee and hip soreness. Oh well, I mused, I was strong and I would walk through it and soon I would be better.

By the end of the next day I could barely gimp through my tiny house, my hip on fire with inflammation, the ligaments and muscles that support the joint feeling pulled and bruised.

My spirits and hope sank.

What if I wouldn't be able to reclaim my walks? What if walking for exercise aggravated my hip joints to the point that it claimed the ability to walk even the small bits I need to maintain my life? I just don't know what the future holds for me with this disease. I don't know if I may be one who needs to have hip replacement surgery, or ends up in a wheelchair.

I'm 32 years old. I'm not prepared to choose a cane or use a wheelchair for trips to the zoo or the mall.

It's a very isolating sense of worry; a very isolating pain. I thank everyone in my life who takes me at my word when I say I am exhausted or in severe pain, even when I "look normal" and am smiling.

So while I take a day or two off from my walking and turn to research to try to find the answers to my questions, I cast out the proverbial net and pull in my thrashing, fighting hope, and know that tomorrow may be better than today.

I will keep fighting to find the balance.