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 firstname.lastname@example.org.
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.
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.
Recent research is showing links between certain foods and chronic pain. I have reviewed this research extensively and summarized below, what foods and drinks can ease chronic pain and what ones can increase pain.
*Please keep in mind that these are general suggestions and should be tailored to your existing health conditions.*
EASE PAIN by eating/drinking:
Ginger – lowers inflammation and muscle pain.
Onions – contain phytochemicals that reduce inflammation. Sea Vegetables (Kelp and Dulse) – contain fucoidans shown to reduce pain and provides trace minerals. Avocado – high in Vitamin K can reduce pain and arthritis symptoms. Tart Cherries or tart cherry juice – contain anthocyanins, which are thought to reduce inflammation. Pineapple & Papaya – contain enzymes that break down protein that cause pain. Garlic – contains phytochemicals that reduce inflammation. Tumeric – lowers enzymes linked to inflammation…Curcumin is the ingredient that likely provides the benefit. Olive Oil – contains oleocanthal may have the same effect as ibuprofen and other NSAIDs (nonsteroidal anti-inflammatory drugs). Raw Coconut Water – contains potassium aiding in rehydration and thus reduces pain. Walnuts – they are high in Omega-3 Fatty acids and antioxidants which may assist in reducing pain and inflammation. Flax seeds – they are high in Omega-3 Fatty acids and antioxidants which may assist in reducing pain and inflammation. Pumpkin seeds – they are high in Omega-3 Fatty acids and antioxidants which may assist in reducing pain and inflammation. Fish (Salmon, tuna, mackerel, sardines, halibut, shrimp, snapper) – they are high in Omega-3 Fatty acids and antioxidants which may assist in reducing pain and inflammation. Dark, leafy greens – these are high in antioxidants and creates alkalinity vs. acidity. Acai berries – high in antioxidants and Omega 3s. Blueberries – high in antioxidants. Green Tea – contains numerous antioxidants.
Monosodium glutamate – found in soy sauce, broths, soy products, processed foods, yeast products, sprayed on food crops. Stimulates pain receptors. Aspartame –extensive research show numerous dangers from consuming aspartame including chronic pain and fibromyalgia. Activates neurons causing increased sensitivity to pain. Sugar – can drastically increase pain. Causes mineral loss as it extracts minerals from muscles and bones. Sugar also causes inflammation. Red meat -corrosive free radicals from iron may promote inflammation. Also contains arachidonic acid, which may worsen inflammation and related pain and swelling. Egg yolks -contain arachidonic acid, which causes inflammation.
Yeast/Gluten -gluten can be seen as a foreign pathogen and inflammation is caused to fight it. It is found in wheat, rye, barley and some oats and it is also in processed foods. Milk products -contain high levels of casein which is hard for the body to process and can lead to inflammation. Fried foods -contain Omega 6 fats, which can cause inflammation. Carbohydrates -often cause inflammation. Caffeine –increases inflammations and causes loss of minerals, Coffee prevents pain relief by blocking the receptor sites. Alcohol –depletes minerals, causes inflammation, causes dehydration.
I have had a life-long passion for off-the-beaten-path travelling. By the age of thirty-five I had travelled to eighteen countries and my list of future trips was lengthy and included a camping adventure in Kenya and Tanzania. In October 2008 little did I realize when I stepped off the plane from a trip to Europe that this would be my last trip overseas indefinitely. Four days later, my recurring back injury put me in a state of disability that lasts to this day.
Because I am now unable to sit for even the shortest amount of time, travelling overseas is an impossibility. Now even a 30-minute car ride to my mother’s is an ordeal requiring me to lay a custom mattress flat in the back seat of a car while someone drives me to visit her. Long gone are the dreams of exploring other countries. Now I just wish for the ability to sit for the car ride to a nearby town to watch one of my nephews hockey games or to simply to be able to drive myself to the grocery store only a ten-minute drive from home.
The sadness, anger and depression that come with the loss of the ability to travel can be overwhelming. Often these feelings are triggered when opportunities arise that I am unable to participate in. Like two weeks ago when one of my best friend’s decided she wants to celebrate her 40th birthday, with our fellow girlfriends, in Las Vegas. I now have to endure listening to every detail of the planning of the trip and then hear the stories of the adventure upon their return.
Not even a week later, I received a group from my aunt saying she was organizing a family reunion in London, England in 2015. Each of my family members responded to the group email sharing their availability while I of course did not even bother to reply. I understand she was including me to let me know that I was invited but in some ways I wish I never even knew about the plan.
At these times the sadness becomes overwhelming and like so many people dealing with chronic pain, illness or disability, I ask “why me?” over and over. I try to figure out the lesson I am supposed to learn from my situation but in the end I am unable to make any sense of it. I try to be gentle with myself and recognize that these feelings are only to be expected; after all, the losses I have experienced are great. Anyone would be sad and question why it happened to them. In other words I normalize the feelings.
For myself, or anyone else though, I know it is important to not get stuck in this place of questioning and sadness. I allow myself to ask “why me?” and feel the sadness but then I compel myself to try and let go, move forward and get in touch with the present moment. I do this by concentrating on what is happening right now and identifying what I am grateful for, no matter how small. For instance I focus intently on the joy I feel from petting my cat who is curled up beside me or I call my nephew and listen as he excitedly tells me about his latest hockey game.
I reflect on my adventurous travels, each trip planned with the help of travel guidebooks and I realize that I am on a journey now but without any guidebooks. I continue on this chronic pain voyage as if I have been dropped off in the middle of a jungle in an unknown country; unsure of what to do, where to go, wondering if I will be okay. In the jungle I know I would focus, stay positive, take one step at a time and, most importantly, I would take time to appreciate my surroundings no matter how scared or lost I was. So that is exactly what I will aim to do on this, my chronic pain journey.
Do you struggle with travelling due to chronic pain? What do you do to stay positive and move forward? I would love to hear from you.