Life has a real sense of humor. Sometimes it throws you a little curve ball that can be manageable albeit inconvenient, and other times it tosses you a big, fat, unexpected pile of crap without any means to remove the offending garbage that now sits at your feet. You are unable to walk around it, you can’t climb over it, but rather, the only solution is to slowly chip away at that dismal mountain, before you can walk through the pain in order to gain some sense of life again.
I didn’t intend to start my first blog article in over a year referring to “a pile of crap,” but when I tried to summarize the health issue I was suddenly confronted with over three years ago, well, the first thought that came to my mind was, “It’s been a shitty couple of years.”
Now that I have had some time to sit back and dissect exactly what happened, well, it’s hard to put a clear perspective on my illness, even to this day.
Polymyalgia Rhuematica (PMR) attacked my muscles and joints literally one evening while I slept. I went to bed feeling healthy and strong, yet woke up the next morning and struggled to move my legs without crippling pain. You know that feeling you get the morning after running a marathon? Yeah, well neither do I. So I convinced myself I must have exercised too hard the day before. But then I remembered that was impossible as well. Yet my legs felt strangely heavy and refused to cooperate with me when I attempted to get out of bed. None of this made sense. So, I put it in the back of my mind as my symptoms eased throughout the morning.
However, as the days and weeks wore on, the pain steadily spread up to my hips, arms, and finally my neck and shoulders. Walking was difficult, bending over was excruciating and lifting my arms over my head was a movement I could no longer consider. Much like the nervous anticipation you feel just before jumping in a pool of cold water, and the stunned moments immediately after you submerge yourself, was how I felt every time I needed to maneuver my legs to get into a car, to roll over in bed, to stand up from the couch, even putting on my shoes. Every movement became a painful shock to my once healthy and active body.
Because I thought it was a simple virus, because I had so much going on, BECAUSE, BECAUSE, BECAUSE, I put off going to the doctor until I simply couldn’t take it anymore. Stupid. Mistake number one. Why is it that, as mothers, we anxiously take our children to see the pediatrician the second they sneeze, but we disregard our own selves when we feel ill, tired or anything else for the matter? Apparently, I missed the lecture where you need to put your oxygen mask on first before you can help others.
Yet, I was fortunate. Unlike many patients who wait months for a proper diagnosis, my very good doctor detected my problem almost immediately. A leading arthritis specialist, who initially denied I had PMR because I was considered too young, confirmed my illness a few days later. Apparently, PMR is very common in men and women over 70. I was 49. In his 25-year career my new doctor, who would care for me for the next two years, had only seen one other person under 50 with PMR. Lucky me. I have since learned that this condition has many younger patients than I was lead to believe.
So with a prescription for prednisone, along with the comforting words that my condition could last anywhere from “two weeks to ten years,” and that I may experience weight gain, insomnia, hair loss, mood swings, and in rare cases, blindness, I was sent on my merry way to try and figure out my new normal.
No one knows what causes PMR. It’s a viral condition that physicians feel is associated with the immune system, genetic factors and stress. Okay. That last one made sense to me. Stress and I were, and continue to be, good friends. We know everything about each other. It wakes me up at night sometimes to say hi. We often walk hand in hand and call each other just to check in. And on that one August morning in 2011, my friend “Stress” decided I needed a little reminder that it wasn’t too far away.
PMR doesn’t ever really go away, but the steroids helped ease the often unbearable soreness. While the inflammation in my joints lessened, other problems occurred, such as a physical and mental fatigue so severe that having a colicky baby (which I experienced thanks to my first born) seemed like a walk in the park. I spent many days in bed when sleep was impossible the night before. Because it was extremely painful to roll over or pull up an extra blanket, there were too many evenings where I would go to bed and stay in the same position the entire night. Every little movement had to be thought out and sometimes hyperventilated over before I held my breath and finally plunged in.
After several difficult years under my doctor’s supervision, I was finally and gratefully weaned off my medication and months later declared in remission. While I do have flare-ups, and the PMR has not completely left my system, Advil has now replaced my steroid intake. I may still walk funny at times, as it takes me longer to move my legs after sitting, and I still have trouble lifting my arms over my head, but I am hopeful the worst is behind me.
During my illness, I forgot what it was like to live pain free. Even to this day, PMR crosses my mind all too frequently. I still re-think my steps, and look for elevators until I realize this is no longer required. But it wasn’t just the physical setbacks that plagued me. Ask anyone living in chronic pain and they will tell you that it affects your mental health as well. Depression and PMR go hand in hand for the vast majority of sufferers. I was no different. While mine was controllable, there were some days that stretched into several where living with PMR got the best of me – days where you lack any kind of hope that your body will repair itself. You feel old, tired and ugly when all you want to feel is healthy, active and engaged.
But today, I’m optimistic. After hard work, good doctors, a loyal and caring circle of family and friends around me including an online support group and yes, lots of faith and patience, I was able to plow a trail through that pile of crap and reach the other side.
What happens when life suddenly stands still, and you are confronted with something of which you have no control? What does one do when faced with long days sitting on a couch or lying in bed besides watching bad television? Hopefully, you learn something. And I did.
Joy is hard to find when you live with chronic pain, but today, no longer tied to my bed or hobbling around like a woman twice my age, I now take extreme happiness in a lifestyle I once took for granted. What I considered important before my diagnosis is no longer. Material possessions mean very little. My new saying is: “Stuff is stuff and more to dust.” Most of what we gather has absolutely no bearing on who we are. Kind words, good deeds, a warm smile, meaningful conversations and experiences leave a bigger and lasting impression than anything you buy at the mall.
And while this has taken longer to embrace, I am learning to simply let go. Yes, as I mentioned, “Stress” and I are still in touch, but I try to remember that worrying is nothing more than a waste of time and a lack of faith. My life can no longer be focused on the “what if’s” or the anxiety I feel when I am not in control. When my children can’t (or won’t) answer a text within five minutes, I try not to imagine them in a ditch. If clients ask me to revise an article, I’m not going to assume they will write me a bad review. Worry never solves anything, and when encouraged, it spawns a life of its own. I dwell on the present, because we are not promised anything other than today.