Raging Waters in a Sea of Emotion
Over the years, in search of answers to the pain and discomfort I have been experiencing, I have cycled through so many emotions, and back around many times. The overwhelming sensations of fear, anger, shame, exhaustion, inability, sorrow, rage, mourning, defeat - all of it - has taken me down a path to insanity. And those closest to me have come along for the ride. Some I even left clinging to a buoy, braving the storm.
AxSpA affects my body and my emotions
The lengthy journey to my diagnosis of axial spondyloarthritis has been burdensome. I carry the weight of it every day. My body hurts. Every. Last. Bit. Of. Me. The saying, "The struggle is real" is by far underrated when trying to understand chronic illness. The moment I rise, I am acutely aware of the effects, the strain and drain, AxSpA has not only on my body but on my psyche. It chips away at my soul, breaking off bits of my humanity, my personality, my humor - the identifying elements that make me, me. I am a shadow of who I should be, and I mourn her every day.
After diagnosis, depression seeped in so deeply that I considered ending it. I began to perceive myself as a boat anchor in a raging oceanic storm, with those I am intertwined with in my life on deck, flailing back and forth just hanging on for dear life. My endless waves of outbursts, tears, and humiliation have driven them as insane as I feel inside. This disease has affected all of us, and the reverberations have changed our life course. They cope with my 4-day sleeping marathons, weekly no-meal plans, or my "angry" months, even when they’ve worked 50-plus hours and have lives of their own to tend to.
This is all encompassing
Inflammatory arthritis - a chronic debilitating suffering that takes over, for some rarely eased by medication or therapy - is an all-encompassing ailment. The inability to complete the least exhaustive of tasks is defeating and demeaning. I do what I can when I can. But lately, it seems to be less and less. My oomph has up and left me, at least for the moment. Chagrined, this "moment" is lasting longer than I ever thought it could. As days pass, I have less urge to get up to wash my face or pull on clean undergarments. Loved ones are finding they need to take over, and I feel shameful that I can't cope with or "get on top of" this illness.
The exhaustion alone is like braving a torrential downpour, getting pushed to and fro, ending up in a pile feeling half dead. There are days I barely lift my head up off the deck to see what's happening around me. Not participating in, but realizing life continues on without me is drowning me mentally. I want to participate in things, in life, but it has slowly decreased to the point of just being an observer in everyone else's life, and it’s depressing. Enough so, that I have considered psychotherapy for those suffering from chronic illness. I need a plan. I need to get back at it - to living.
I feel anger, denial, anxiety, and panic
The chaos and fear that slowly integrated itself into my life as a raging storm of emotions continues to limit me, at times from moment to moment. Anger, coming and going, with cycles of denial and acceptance, keeps rearing its head. Anxiety trails in. Panic is evoked. Who will take care of me when I can't? What happens if they can't take care of me? How will I survive this? Where will I be at 80 years old? Will I even last that long in this kind of pain? I think back about my dreams and where I wanted to be at this point in my life and I weep with sorrow, for who I thought I could become, the person I really wanted to be.
The rage I feel about having this illness punishes loved ones for things they have no control over. It reminds me of a raging ocean on a coast that is being tormented by a storm. Slowly it is wearing away at the shoreline, taking the small essential elements of its being, wearing it down. Seeing the hurt and the pain on their faces for being helpless toward my situation is absolutely heartbreaking. I have become rash and blatant. I spew my anger freely at those who love me the most. Regretful, I do all I can to make up for being emotionally unstable during these times. But, I see how hurt they are. Shame slipped in one of the cracks created by my pain and rage. It has become a constant in my life. I am shameful of the individual I am, of what I am not capable of, of what people think of me. Forever apologizing, for the things I can't do, the person I can't be for them but wish I could be, is what I do. It is all-encompassing, this pain.
Yet, I continue to breathe, even in a pile on deck, waiting for relief to come. I yearn for the pain to end. Still, I forge on trying to find answers and ways to relieve the burden of disease. I honestly do not know what is driving me to continue on, but maybe it is having hope that one day a cure for spondyloarthritis will come, and I will go back to normal - something I vaguely remember. I am longing for a sea-change, a metamorphosis, a transformation that will again alter the direction of my life, and those close to me. Maybe I am out searching for ways to accept this disease and to find ways to learn to live with it, in a sea of ever-changing emotion.
Does reading AxSpA patient stories help you in your journey?