After about three weeks of the most painful headaches I’ve ever had, I’ve been a little overwhelmed with trying to make up all that time off. I don’t know what brought them on, but I’m pretty certain it wasn’t lupus this time. After all these years of asking the question “Is this lupus?” with every new symptom that would pop up, I finally arrived at the day where lupus wasn’t the first thing that came to mind. Now that I seem to have come out the other side, I may never really know what was actually behind them. All I know is that the space between my ears was like a little black box with stuff going in and stuff coming out, but the noise going on inside was controlling my life.
The thing about pain is that when you don’t have it for awhile, you really do forget what it is like to live with it. I’ve been so fortunate to have made it through the pain I had right before my diagnosis and left it behind for nearly a decade. I am grateful for every day, believe me. I know that there are so many out there who are begging for a month, day or even hour without being held hostage by their bodies. When my headaches started in, I first blamed lack of sleep and intended to tough it out without meds. By the fourth day, I was taking any sinus, cold or allergy pill within reach. I gave in to the pounding temples, throbbing eyeballs and the sharp jolts of pain that felt like what I only imagine an exploding vessel would feel like. However, the worst thing wasn’t about having to take the pills or even having the pain again. It was being reminded that my life can be brought to a complete stop whenever my body demands it.
While my head was exploding, I felt like I couldn’t do anything. Read, spend time at the computer working or goofing off on Twitter, watch TV or sleep. I couldn’t plant my garden or catch up on any house chores because bending down and moving around just made my head hurt worse. I was just stuck sitting and fuming about the prison term I was being forced to serve without any explanations. Living with an illness can get like that and I was seeing myself as unproductive, not getting to the things that I knew I wanted to do.
The challenge, though, went beyond the pain as I began to truly notice my response to it. I realized that the things I do most often were those things I couldn’t do during my body’s rebellion and it left me aware of how limited my coping tools were in a ‘pinch’. My head was pushing me to step outside the ‘box’ and force me to explore some new skills.
I brought out my art supplies, took walks, made soups and had long talks with my daughters. The third day into it, I noticed no headache until noon, then 3PM, then a day without and so on until now, where it’s been three pain-free days.
This month is awareness month for many illnesses that involve chronic pain such as Fibromyalgia, Arthritis, Lyme disease, and, of course, Lupus. Every day, there will be bloggers, news research articles, internet conferences and radio programs, ad campaigns and updates/tweets on the popular social networking sites. Awareness isn’t limited to online activity either. For example, The Pacific NW Chapter Oregon Branch is holding their walks this month (http://www.arthritis.org/chapters/pacific-northwest/events.php). Also, this weekend, there will be a local health event here in Portland hosted by the Jewish Family & Child Service. ”A Day of Empowerment, Solutions, and Support for Individuals with Acute or Chronic Illness or Disability and their Friends and Family ” will be held on Sunday, May 16th, from 10AM to 2PM. For those of us who are struggling with our health, this event offers a variety of presenters and exhibitors (including MLWT as both) to help find some supportive resources. For us like me, who are blessed with having more of our time pain or challenge-free, it is a valuable reminder of how we still have to prepare for when our bodies rebel. Living well is grounded on strengthening individual empowerment and, even though we may never be able to control our pain or symptoms completely, we can control our responses to it. Not simply by thinking more positive, but being willing to think outside your own box.
Hope to see you this Sunday~ it looks like there will be some great presenters and exhibitors to explore. MLWT Guest blogger and new parent support practitioner, Sarah Nuxoll, will be sitting with me at the MLWT table enjoying the event, too. Stop by and say hello~
