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.
Six years ago if you had told me that drawing or music could assist me in dealing with my pain I would have said, “no way, I am not an artist and I need medical treatment not art or music”. Interestingly as the years passed and my pain and disability increased, I opened up to the idea of utilizing the Arts to help me deal with the pain. I realized that the Arts can be an excellent form of distraction from pain and, on a deeper level, a way to explore and express my feelings about living with chronic pain.
Art Therapy brought the tears forth…
I remember the first time my counsellor suggested that I use art to explore my feelings regarding chronic pain. I said “oh no, I am not artistic”. He persevered though and convinced me to go home and try drawing with pastels and just see what would happen. Let’s just say I was EXTREMELY reluctant and very skeptical as for one, I “couldn’t” draw and two I didn’t understand how art could possibly help with the suffering my chronic pain was causing me. I had been doing traditional counselling for some time, including the highly-touted cognitive behavioural therapy (CBT) as well as acceptance and commitment therapy (ACT) and felt I had reached a plateau with these more mainstream types of therapy. I knew I needed to try something different.
So after my session that day I pulled out a some paper and pastels and sat there staring down blankly for what seemed like an eternity. I finally starting drawing the only thing I knew how to, a daisy. Hmmm I thought that didn’t reveal anything knew to me. I turned the page over and stared at its blankness. Before, I knew it, I grabbed a dark brown pastel and started to draw a circle over and over in the centre of the page. I added black to it. A deep dark pit that transformed into an eye. I drew tears falling from it. There were so many tears falling from the eye that they created an ocean that I drew over the entire bottom two-thirds of the page. I stared at the drawing, stunned that my hand had just created the image. Soon, real tears were falling from my eyes and falling into the ocean on the page below. I allowed the sadness to pour out of me. I wailed, I cried, I yelled. I did this for about half an hour until I was tired and exhausted but a whole lot lighter. I realized that I had been holding an ocean full of tears inside me for quite a while now. Drawing had allowed me to access my feelings again, which lately I held in tightly as I was trying so hard to be strong and to hold myself together.
Music Therapy brought joy… Next my therapist suggested I try exploring music. Well this prompted more anxiety than when he had suggested drawing. Flashbacks of skipping out of high school band class flooded my mind as I remembered how I would do anything to avoid playing my flute. I came back to the present moment and reminded myself of how helpful drawing had turned out to be. I agreed to go home and play a recorder. Yes, a recorder…that funny plastic instrument we had to play in elementary school. I called up my best friend and asked her 8-year old daughter if I could borrow hers. They arrived on my doorstep a few minutes later with the recorder in hand ready to witness my musical talents! I must say recorders have improved in appearance…no longer brown and cream coloured, this one was all colours of the rainbow! I was immediately inspired and in giggles before I even touched my lips to the mouthpiece. Once I regained a little composure, my fingers quickly found their places over the holes and I immediately remembered how to play “Hot Cross Buns”. What fun! I absolutely howled with laughter each time I finished playing the song. It was seriously the most fun I had had and the hardest I had laughed in so long.
While drawing had provided me with a way to release my tears, the recorder allowed me to let go, be in the moment, laugh, reconnect with my inner child, and escape the reeling thoughts about pain.
I then brought art and music to my Chronic Pain Support Group…
After personally experiencing the benefits of drawing and music, I decided both would make great topics for the chronic pain support group I was facilitating.
I coordinated with one of the members and we organized a meeting where all the members sat and drew their own mandala (just google if you want the details on what a mandala actually is). It was fascinating to see how each person’s mandala was unique in colour and design. As we sat working on our creations, the group members shared personal examples of how engaging in making art allowed them to escape feelings of pain, even if only briefly.
For another meeting, I collaborated with a member who was a piano teacher. I shared the story about my recorder therapy session and talked about the numerous studies I had read showing that just listening to music can ease the level of pain one feels. Our resident piano player provided her own testimony of how music was her main escape from pain. She handed us each a cd of her beautiful music. Her classical piano cd has helped me many times, to calm down when the a pain flare has occurred, and I am on the verge of panic. Other days I put on my “Fun” playlist on my iPod and crank it up. Even if I am bedridden, I can’t help but feel uplifted. It has become clear to me that music can be very powerful for those of us struggling with chronic pain.
My favourite artistic outlet though is photography…
Prior to being disabled with chronic pain, I travelled the world taking photos of sites around the globe. When my disability prevented me from ever travelling again, I put down my camera too. A couple of years later, I picked it back up when I started Susannah Conway‘s online course, “Unravelling”. The class was about exploring your inner self through the use of photography. As I worked through each of the “assignments” I was shocked by how taking pictures of my reflection and even my feet could be transformative experiences. Sharing and explaining these photos with fellow course participants further increased the positive impact.
I learned how powerful photos of “everyday” things could be. Since that course, I have rarely put my camera down. Even when I am bedridden I take photos of my cats on the bed or I open up my computer, edit photos from the past and share them on the Internet. These various processes allow me to escape my current circumstances, provide an outlet for my feelings, offer me a way to share my reality and a avenue to connect with others. This past year I even created a daily theme photography group on Facebook, called “Life in Focus“.
Next, I plan on starting a project called “Pain in Focus“. My mission for this project is that it will encourage individuals to use photography to express and share their feelings about, and the reality of, living with chronic pain. I hope to have the project “live” by November for National Pain Awareness Week. Please check my blog for updates or email me at email@example.com.
My favourite links about the Arts and Chronic Pain… Pain Exhibit – the PAIN Exhibit is an educational, visual arts exhibit from artists with chronic pain with their art expressing some facet of the pain experience. The mission is to educate healthcare providers and the public about chronic pain through art, and to give voice to the many who suffer in abject silence.
Para las fridas (for the Fridas) – my favourite blog about chronic pain. Like me this blogger is an appreciator of the amazing artist and chronic pain sufferer, Frida Kahlo.
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.
Living with chronic pain would be a lot harder if I didn’t have pets. My two cats are the biggest blessings in my life as I deal with the challenge of a life with chronic pain.
So often with chronic pain we are physically isolated from others. For me, I am rarely able to drive and I often can’t participate in social activities with friends and family. I spend the majority of at home but I am not alone…I have two wonderful cats, Coco and Simon, who take the edge off what could be a very isolated and lonely existence.
Furthermore, with pets, one doesn’t experience the emotional challenges one can experience with friends and family. Often people close to us do not know what to say to those of us dealing with chronic pain or they say or do the “wrong” things. Additionally when we are with them, we may feel we have to put a mask on and fake feeling okay. On the contrary, pets don’t say hurtful comments or judge us. They are there to snuggle us, comfort us, and gaze at us adoringly no matter how we feel, what we are able to do physically, what we are able to accomplish or not accomplish, etc.
Our pets ask for so little yet offer those of us with chronic pain so much. Give your pet a little extra loving today to say thank you for being by your side through the challenge of living with chronic pain.
How have your pet(s) help you with your chronic pain?
Today I had one of those glorious moments when I briefly forgot that I live in pain almost 24 hours a day.
I was feeling well enough to leave the house and go on a short walk in a nearby park. The air was crisp, the sun was shining and the birds were chirping. At one point I stopped walking in front of a gorgeous waterfall, turned to the sun, and just let it beat down on my face. I thanked the Universe/God/whomever for blessing me with this moment of happiness. I so rarely have those times anymore, where the joy is so strong it stops my brain from thinking about my disability. Oh what a gift it was today to experience this wonderful feeling!
A few minutes later a thought came through my mind, “I am still me”. I spend 99.9% of my life thinking about how my life isn’t what it used to be, how I am not who I used to be, but for an instant today I felt like “me”.
Do you ever experience moments of “normality”? Do you cherish these occurrences and feel gratitude for them?
Like most people with chronic pain or illness, I have had to say goodbye to many beloved hobbies. Gone are my world travelling days, my biking adventures, and, often, even my waterfront strolls. So I have had to search out hobbies I can physically manage.
My new hobbies have slowly evolved over the past few years. There are some I tried, like sewing, that ended up not being possible on a regular basis, while others like blogging which continues to be a fun and rewarding endeavour. Most recently, I took up knitting. Knitting had never appealed to me but now the prospect of a hobby that is physically possible was downright exciting! Did I seriously just use knitting and exciting in the same sentence??? Uh yes I did, and may I remind you I am under 40! That is how chronic pain changes your view of things. Now the opportunity to do ANYTHING new or creative (including knitting) is a wonderful discovery.
As human beings, no matter what our physical situation, it is important to stay inspired, productive, and experience enjoyment. So be open to new possibilities and new activities. Go on and try that Sudoku puzzle, pull out that sketchbook and pencil, ask your aunt to teach you to crochet or maybe even take up stargazing…you just never know you might enjoy it!
What new hobbies have you adopted since dealing with chronic pain?
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.
Tomorrow my boyfriend arrives to visit me. He lives a 12-hour drive away from me and comes to visit every two to three weeks. Normally I would be very excited but I am in panic because I am having a major pain flare-up.
I am mad that my pain has flared right before he is coming. My mind races about how disappointed he will be that I am essentially immobile. I think about how I won’t feel well enough to go anywhere or do anything. It amazes me that even though I have been living with chronic pain for the past five years, I still immediately go into a negative panic mode when my pain has a major flare-up. The thoughts race so fast I don’t even realize they are happening…
“oh no, how long is this going to last?”
“am I getting worse?”
“I can’t take this any more?”
These panicky questions are then always followed by the never-ending attempt to figure out what exactly caused the flare-up…
“was it that I drove?”
“is it this damp weather we are having?”
“was it from picking up the cat?”
So my mind races through every single action I have done in the past two days trying to figure it out. I know from past experience that I am rarely ever able to pinpoint an exact cause, but nevertheless my brain desperately tries to make sense of what is happening in my body. My mind wants control. That is the thing when you live with chronic pain you lose control. For type-A people like me losing control is VERY hard.
I am learning, however, that if I want to stay calm, at peace and in a positive frame of mind, I need to relinquish my desire to control what is happening inside my body. I have to let go and become a neutral observer of the pain. Instead of worrying about why the pain is there and fearing it will last forever, I remind myself that the flare-up will pass and simply state “for right now this is how my body is feeling.”
Although this counteraction of “catastrophic thoughts”, as my therapist would call them, feels nearly impossible when my body is screaming in pain and my mind wants to continually yell “why me?”, I have learnt that the “why me?” question, along with all the others, don’t get me anywhere but depressed, anxious, and yes, even suicidal. Furthermore, stressing over the pain and analyzing every detail of it is not going to lessen the pain or make the flare-up end any sooner.
So tonight as I am faced with this surge of pain, I acknowledge that I may not have control over the pain but I can control my reaction to it.