So, time for another round of back injections. A true pain in the butt!! Yet, I was taking it all in “typical day stride” until I told a new friend yesterday that I would not be able to get together today; explaining that I will be otherwise indisposed. And her reaction surprised me. I recently found out that she, too, has an autoimmune disease. We don’t know each other well enough to share details but I assumed she was familiar with the constant juggle of symptoms, pain, treatment options, appointments, etc. You know, the ol’ Chronic Condition Round-Up: “Admission is steep, but the ride is never the same!” And I am sure she has her own daily struggles, but her gut reaction to discovering I was going to have corticosteroid injections was filled with compassion, awe, and even a little fear. She instantly responded with “Oh, bless you! I am so sorry you have to go through this ordeal!”
Ordeal!? And that’s when I realized, it is an ordeal. I am so used to being poked and prodded, that I have become numb to it all. And, truly, this has been a very effective coping mechanism. I think if I let down all my defenses, I would become paralyzed. Because when I pause to think about everything my conditions entail on a daily basis, it is extremely overwhelming. And when this friend so clearly reacted to this, I became uncomfortable. She was shining a light on my dirty little secret: my life is hard.
Three weeks back, I was “poked” in one form or another 3 out of the 5 days. It began with a PPD test (Tuberculosis), no big deal but a prick just the same. This was just the warm-up though; on that Wednesday, I had double corticosteroid injections in both my sacro-iliac joints (tailbone) and my bursa (hip). Then I rounded out the week with 20+ Botox injections in my forehead, temples, and neck (for cluster migraines); imagine being stung two dozen times in less than 10 minutes! And again, when I relayed my weekly adventures to friends and family, it was like I was informing them of that week’s weather patterns. “Oh a small storm front came through in the middle and end of the week, but for the most part, skies were clear and sunny!” My voice was even, the facts were relayed without feeling; I had lost all affect.
Perhaps I need to pause. And hold my own space for a little bit. To give myself a hug. To let myself know that I am proud of the strong and resilient woman I am. To cry for all I have to endure on a daily basis. To mourn for the pieces of “normalcy” I have lost, and will never regain. To celebrate the Survivor that I am. To appreciate and honor the fact that I don’t let my illness consume the all of me. To feel my feelings, whatever they are. To just be.
I get uncomfortable when others are sympathetic to my plight. I still struggle with vulnerability. And in accepting that others don’t view me as a “sympathy case,” they just have empathy and respect for my daily struggles. And even more so, for how I choose to handle these situations. Those are the pieces within my control. And it’s okay for me to have pride over my tenacity and courage in the face of some very difficult daily hurdles.
Each day of my life is like walking through a field of landmines. They’re old landmines, some are deactivated while others are extremely unstable and reactive. I never know which one is going to go off or when I am going to trigger a reaction. Prime example? The Steep Price of Admission I paid for going to the movies with a girlfriend the other day. But even since then, my body has been “a-buzz.” It’s like a feeling of after-shocks that will suddenly shoot down my arm or explode up my spine; intermittent and completely unpredictable.
And then lying amongst this field of mines, are hurdles. Those steep inclines I know I’m going to have to muster the strength to surmount. Like today’s injections. I know in the long run they will (hopefully) provide relief. But in the short term, I have to accept increased pain and aggravation of my symptoms. I also have to measure the risk of even trying these treatment options that provide sporadic results. The sacro-iliac joint is the most difficult joint to inject. It’s nestled deep amongst tissue (nerves, muscle, connective) and is a very small opening. I’ve observed them searching for it on imaging, watching this enormous needle poking around inside me trying to find the sweet spot. There is no guarantee that it will hit its mark.
And that’s where I just have to remember to bring it all back to today, to the present moment. Because if I (and many of you!) were to let my mind expand and wander into the days before and all the days to come of this illness and its trials and tribulations, I would curl into a ball like a potato bug and hide forever behind a hard shell. This is not an acceptable answer for me either.
So, where does that leave me, today? The conversation with my friend yesterday and my meditation on this today, has given me a clear direction. It’s time to re-focus my energy on Balance. Often, I equate this with the delicate balance of doing just enough activity (not too much, not too still) that will support my body’s health without sending it into a flare. But, today, I need to practice Emotional Balance. Giving myself the space and the permission to feel the emotional effect all of this has on me; to honor the wear and tear it takes on my mind and spirit. But this “delicate balance” comes into play in feeling my feelings just enough and then letting them go, finding acceptance and peace in them, sharing them with a friend so I am not alone in my pain and fear. Letting my feelings flow through me, but not get stuck within me.
Where do you need to create balance in your life today?