Living with chronic pain can be debilitating. Often times we swing from isolating ourselves or trying to pretend it doesn’t exist. But neither works. We have chronic pain. We live with it every day and being able to share how we feel with those we care about and express our needs is imperative. But that’s easier said than done. The temptation to stay at home and not engage after hours is strong. I know it can be for me, especially when I’m exhausted and in worse pain. But, there’s no question pushing myself is the best medicine.
Starting this blog was not just a means to share data that could help those suffering from chronic pain and their loved ones but also to let them know they’re not alone in this journey. I too understand their struggles, worries, fears, pain and hopes that tomorrow will bring a better day.
I choose to share my story and my experiences to show people that pain is often invisible and diminished even by those who mean well. People dealing with chronic pain disorders are some of the greatest actors around. Too often we have to hide our pain to survive. Those close to me always know the truth, but to everyone else I’m the pillar of perfection -or so I’d like to believe. To me, no one else could possibly see the truth- the underlying grimace that’s always part of my smile, the slowing gait as the day progresses or the struggle to stand up straight. Until they do. My eyes that can no longer hide the fatigue I feel, the cane or arm of a friend I require to walk any further and then the rest stop needed to recover. I even tried using an umbrella for months thinking no one would notice it was really my cane. I’m pretty sure the hot, clear skies of sunny Arizona gave that one up quickly!
As a physician, patient and chronic pain sufferer I realized this wasn’t helping anyone, including me. By opening up and putting myself out there I hope it’ll help others. It’s an opportunity to provide important resources and current options. It’s also a chance to discuss my own experiences that may help others to deal better, become more active, learn ways to live with pain and share their stories. That’s what so powerful about this venue. Social media allow us to educate ourselves in ways not available before, but it also helps us to realize we aren’t alone. Maybe the most important aspect of all. Whether it’s right here in our own community or a world away, at any hour there’s always a place to go to when we’re hurting and feeling alone.
I’m new to this arena. Until my posts, I’d never had a Facebook page and to say my website was minimalistic would be kind. So I’d never understood or realized the vast amount of information and ability to exchange ideas that has become available. Some can be incredibly helpful. Others I fear may bring false hopes and predators hoping to make a fast buck at our expense. Or just a constant spewing of anger and frustration without reasonable options for a resolution of those feelings. As a profession, providers have a long way to go, but we’re moving in the right direction. Find those that can understand and guide you through the myriad of issues we all suffer with, at the same time honoring the truth we need to hear. If you hurt, you hurt, period; there has to be a balance between denying someone’s pain because they can’t find a cause, and another who just throws pills at you and never expands their treatment plan.
Social networks can be an enormous asset. Even if it’s just by the volume of perspectives it can provide. I recently learned there’s even a name for those with chronic pain- spoonies. I used to explain to people that I have only so many steps per day. Once used, I’m done. Period. There is no more (see post on Disneyland episode). As I explained then, this is called neurological claudication. With activities such as walking, the nerves from my back into my legs can’t continue to send the signals needed to keep me moving due to inflammation and/ or impingement on those nerves. Eventually the inability to transmit these signals causes such pain I have to stop and rest. I just can’t move another foot. With rest and time the signals catch up and I’m ready to go again.
The term “spoonies” is another way for saying the same thing about the “amount of energy” we have available each day to function. It so wonderfully depicts how those of us with chronic issues must constantly pick and choose our priorities because we have only so many “spoons” a day. Apparently this is a term commonly used in the chronic pain/illness community. Everyone has a different number of spoons, and the number of spoons you have varies from day to day. Based on the “spoon theory” by Christine Miserandino, the analogy of spoons can help explain what it feels like to be chronically ill. Being a spoonie not only means managing physical symptoms such as pain or fatigue, but constantly being aware of your condition and deciding how to manage these spoons effectively. Maybe this analogy can help others to understand that living with chronic pain is physically and mentally exhausting.
It’s a succinct way of helping others understand our daily issues. And gives those with chronic pain a quick way to see a fellow traveler. Living with chronic pain is a constant struggle and balancing act. Often it can be made easier by taking advantage of everything available to us- medications, healthcare providers, physical therapy, exercise, alternative treatments, diet, and sharing. Social networks are here to stay. Next week I’ll discuss how they can help and sometimes harm those looking for help.