I am stuck in bed yet again. Unable to feed myself. Unable to move. The sun beats outside my window. I hear people laughing as they walk by my condo building. I imagine all the things “normal” people are doing on this summer day…working, driving, exercising, playing, walking, dining out on patios, etc. All things I cannot do. No, I am a prisoner in my body listening and watching the world pass by.
Oh how the hours drag. I listen to CBC radio and try to distract myself. I learn about the ceasefire in Gaza. Oh if only the pain in my body could have a ceasefire. I go on to Instagram only to see that my photo group’s topic for the day is “reflection” and realize that I can’t go anywhere to take a picture of a reflection and I sure wouldn’t want to take a photo of my reflection right now. I haven’t showered for two days. The pain I am in is clearly visible on my face. The fact that I didn’t sleep last night is evident with the dark circles under my eyes.
I go on Netflix and try to lose myself in the TV Series “The Killing”. Although the lead character is experiencing deep emotional pain I tell her I would trade my life for hers in a second. She can walk, sit and stand. She can leave the confines of her four walls.
The series ends and I stare out my bedroom window at the flowers wilting on my patio garden. I haven’t been able to water them for two days and in this extreme heat they are wilting as much as I am from the pain.
Is this a poem, a pity party, an essay or a journal entry? I don’t know. All I know is that I have to let it out. I have to share my experiences. I will risk the judgment, the embarrassment, whatever may be the result. I guess I am reaching out…hoping somebody somewhere will read this and understand the isolation and loneliness disability and chronic pain/illness create.
I am really struggling with the fact that I think I have finally given up on believing there is a God.
I just can’t possibly understand the purpose of my housebound life. A life where my spine requires I eat my meals laying down, a life without the ability to have children (whether adopted or my own), unable to drive, go to the movies, grocery shop, and a long list of other “normal” every day activities. Add to that days when I am unable to shower, make a simple meal for myself and walk from my bedroom to the kitchen. Deriving some purpose or point to my disabling chronic pain seems impossible. I ask “why would God allow this”? Why should anyone have to feel like EVERY day is a major struggle? Why should anyone live with this little quality of life?
For the first few years of dealing with chronic pain I held onto my faith despite losing the ability to fly, jog, garden and work full-time. I grieved the losses but pushed forward, striving to be grateful for what I still could do and believing God had a plan for me. Over the past three years as the level of my disability significantly increased, my faith in God was often the only thing that kept me going. I would pray and tell myself I was not alone; that I always had God. I even had people trained in faith healing come and pray with me as I lay flat in my bed week after week. I longed to believe their words telling me that God is real, God is good and always with me. However, as my physical disabilities continued to decrease so did my level of faith in God. Now today as I lay here living a primarily horizontal life barely managing to do the basics of self-care each day, I realize that I have come to a place where I no longer believe in God.
I am saddened by the fact that I have lost my faith. I stare at my “Believe” sign hanging in the living room and wish I still could.
I use affirmations, on a daily basis, to deal with my pain. I seriously couldn’t function without them. In a pain flare-up they prevent me from entering a spiral of negative thoughts that in the past led to depression and even suicidal thoughts. Sometimes I only have to repeat the affirmations a couple of times, while other times I have to read them over and over throughout the day. They have helped me make it through another moment, another hour, another day. I even keep a copy typed up on my IPhone in my notepad app. I can’t tell you how many times I have reached for my phone and read through them forcing myself to try and believe what they are telling me. Affirmations make you focus, make you stay positive and ground you in reality. Otherwise our mind can get taken over by pain demons that are determined to rob one of hope, peace and will.
I hope you will find these affirmations helpful. Feel free to edit them or even just use them as inspiration to make your own. That is the thing, affirmations have to mean something to you, they have to be tailored to your situation. Only you know the messages that you need to hear when you are faced with a bout of pain. Following are the messages I repeat:
- I am aware I have pain but I observe it with detachment.
- This flare-up will pass…it always does.
- I breathe calm and relaxation into the pain.
- I only focus on the here and now. I am not going to worry about how long the flare-up will last.
- I am handling this flare-up calmly and positively.
- I am patiently handling this flare-up.
- I am grateful for the few things I can do despite the flare-up.
- During this flare-up I focus on taking one moment at a time.
- I will make it through this flare-up. The pain will subside. My mobility will increase.