I was wondering why I had one outbreak after another for five weeks. I couldn’t seem to stop them. Every time I thought I was well, a new rash developed. As a result, I wasn’t sleeping properly because of the constant pain I was experiencing. Another interesting detail I noticed, and could not initially interpret, was the odor of my body. I found it acrid, even after a shower. I believe that cortisol and adrenaline were to blame. Like an injured animal, I was in high-stress alert. Stress was prolonging my shingles, causing me more pain. Here’s what I now understand:
Real pain needs real medicine.
It is time to take a look at the body’s Central Nervous System (CNS). Our bodies have a dual nervous system, the CNS and the PNS or Peripheral Nervous System. The Chickenpox virus lives in the spinal cord, the CNS. The rash itself attacks along the PNS on the body and skin. Neuralgia, associated with shingles is a consequence of nerve damage on the PNS. The PNS system contains the nerve cells that travel to the CNS. Nerve cells, unfortunately have a kind of binary functionality; they’re either on for off. After weeks of being on, nerve cells may no longer know how to shut off. In a sense, they atrophy in an “on” position, which is why a very common side effect of shingles is the chronic pain caused by nerve damage, known as neuralgia. Some unfortunate souls experience neuralgia for upwards of six months post-shingles! Poor dears.
It was only while talking to a friend of mine who lives with chronic pain that I understood that my pain had not been addressed by my medical provider. Even though the doctor herself told me to expect pain, she never prescribed a pain medication beyond Motrin, and even with Motrin, I was not prescribed the maximum dose available. My gynecologist gives me a higher dose of Motrin for menstrual cramps. At any rate, after trying to “bite through a nail” for another week, I crawled back to the doctor, balled myself up on the examination table, and wept openly. I managed to finally get the lowest dose of Vicodine available. It didn’t help much, but I stopped sweating. My offensive B.O.? Gone by morning! Also, the doctor doubled my dose a day later. I finally slept the entire night. The next day, I had a smile on a face. I knew my body could finally begin the healing process.
I’m fascinated that while in my doctor’s office, writhing in pain, she was trying to give me antibiotics. Surely I had something else, she thought. This was not a normal shingles outbreak. Well, what if one’s skin is brown and one has had about four consecutive outbreaks in a five-week period? How will that look? Through my pain I had the presence of mind to reject the antibiotics, which were in part responsible for my weakened immune system, leading to my original outbreak. At home, while awake in the early morning hours, I looked at pictures of shingles rash. They, in fact, looked exactly like what I had, only on brown skin, no big surprises. But, was my skin color playing a leading role in my treatment? I think so. An additional powerful realization of how lucky I really am, knowing things were bad for me, was seeing that I’ve had a relatively mild case of shingles. My heart goes out to people who are suffering with severe cases. That pain must be unforgiving. I pray that those people had proper opiate pain medicine. I’m convinced that untreated pain will prolong shingles. This is a compounded travesty. Let no one who reads this allow anyone you know to go without the appropriate pain medicine during shingles.
I have had some comforts, one of which is laugh therapy—did you even know that there’s such a thing as Humor Therapy? Well there you have it. We all need a good friend, or ten, to make us laugh, let us cry and miss us when we’re down and out. One friend in particular has seen me through this crisis with sheer exuberance. Somehow, just at the moment when we are both about to cry, Robyn will say something that brings tears of laughter to my face, sending me running to the bathroom to void my bladder and avoid an accident. I don’t know how we manage it, but this unexpected joy has brought me back from the brink of darkness numerous times over the past five weeks. I know it has been the same for her. Even when we are laughing at ourselves, we look through a lens of compassion, understanding and childishness, touching the innocence in ourselves. We get silly people! And, it heals us deep down where the hurt curls itself up. Laughter is one of the few ways I know to naturally get high, elevate your mood, and stay in your body.
I don’t have all the answers or even fully understand this episode in my life, yet. What I do know is that talking to friends has helped. They have led me to alternative care. Their advice has translated into self-advocacy. Friends have driven me to the doctor’s office. Friends have let me cry when I couldn’t hold back the tears any longer. Friends have made me laugh my head off. Mostly, I don’t feel alone in my suffering. This has changed everything. I know I can’t rush ahead blindly. I must be mindful and manage my stress, avoiding extremes. I get to start over. Tea, anyone?