I am hosting a 21-Day Chronic Pain/Illness Photo Project in a closed Facebook group starting Monday, April 27, 2015. Each day there will be a photo prompt related to chronic pain/illness. Participate as much or as little as you would like. No experience necessary. Just use your phone-camera, snap away and share in the group.
If you are interested in joining the project click on this link.
Follow Chronic Pain Life on Instagram – @chronicpainlife
Hashtag your chronic pain photos with #chronicpaininfocus.
I posted back in September that I had completed a 21-day meditation challenge. Now I can proudly, and more importantly, gratefully, say I have completed a solid 6-months of daily meditation practice.
I continue to reap the benefits of using meditation to deal with the challenges of chronic pain. The challenge is to put into words how exactly meditation has specifically helped me manage my daily pain. What I do know is I have a greater sense of calmness, increased gratitude, and I have developed the ability to not panic when I have a flare-up. I have learnt how to stay in the moment, to feel my body as it is and accept it. These abilities grew gradually with time.
I don’t find that meditation has in any way reduced my pain but it has become the most effective tool I have ever used to cope with the challenges of living with pain. By this I mean that meditation has significantly diminished, if not prevented, the feelings of anxiety, panic, depression, and fear that in the past would overcome me every time I had a flare-up.
I have to clarify though, that this took time. I think around the 3-month mark is when I really recognized the difference in myself. The shift was somewhat subtle but at the same time powerful beyond measure. Now that I have been meditating for over 6 months I can’t imagine my life without this practice.
Another benefit of regular mediation is the spillover into the other aspects of my life. Meditation is assisting me in dealing with relationship, financial, and many other life issues. I have learnt how to stay calm, grounded and connected to reality and the moment, not to the stories that swirl in my head and attempt to control my thoughts, feelings and emotions.
Back to meditation and pain…I did find that specific approaches to my practice made me ‘successful’. I have found that regular body scan meditations are the most beneficial type of meditation. I do one every night before I go to sleep. I have also personally experienced, and recently read research, that the regular use of the same guided meditations is more beneficial than flitting from one to another meditation to another.
For instance, In the past I would get bored of guided meditations and want to listen to a different one each time I meditated. Over the past 6 months I took a different approach, I downloaded the Insight Timer app (a highly recommended meditation app which has 87 guided meditations and/or a meditation timer). I tried out many of the meditations and then selected approximately 8 that I really enjoyed. I then began to use these regularly.
The other thing I like about the Insight app is you get rewards!!! Yes, STAR rewards just like in elementary school. I have to tell you, you have no idea how many times the lure of a star on my meditation profile ensured I meditated every day! Hey, whatever it takes! The app also keeps a tally of how many minutes you have meditated, and provides a variety of charts showing your meditation practice. More recently I have joined the groups that are in the app and have connected with others who are using meditation for dealing with chronic pain and illness.
I know many of you have likely read that mindfulness meditation is a great resource for dealing with chronic pain and like me you probably really struggled with sticking to it. I am here to say give it another go, keep trying, I know if you stick with it you will experience incredible benefits. Maybe you are like me and have stuck with it and appreciate all it offers you, I would love to hear about your experience. Maybe you have even been meditating for years and can offer myself and other readers more insight and knowledge about using meditation for the management of chronic pain/illness. I would love to hear from you too.
What I do know is I will be continuing my practice and sharing my experiences here on my blog. On that note, it is time for my nightly body scan meditation 🙂
As of today I completed my 21-day meditation challenge and I succeeded! Honestly a huge part of me didn’t think I would, due to how many times I have attempted to maintain a regular meditation practice and not followed through. I think the 6-step approach that I laid out in my blog post 21 days ago really assisted me in successfully meditating for the past 21 days. Below I will comment on how I found each step to be helpful or how I amended it to be so.
1) Make a public commitment to meditating I wrote a blog post about my meditation challenge which made me feel super accountable. I suppose I could have not written a follow-up post but I would have felt like I failed at meditating and blogging!
2) Make a daily checklist or write daily meditation time on a calendar
I printed a checklist and posted it on my fridge. I found that this was the BEST type of reminder since I go to my fridge multiple times a day. In the past I have put a “meditation” daily notation in my online calendar but I found it is too easy to gloss over. A checklist cannot be so easily ignored as that empty box beckons to be filled. For a list-maker, type-A personality like me it is very satisfying to be able to check an item off a list.
3) Create reminders on my phone
I pretty much forgot all about this step. I did initially add a reminder to my phone but I dismissed it the first time it went off and I never did receive another reminder again. I still think creating a phone reminder could be a valuable idea for helping to ensure regular meditation practice.
4) Make a list of meditation resources for quick reference
I referred to my list of meditation resources and made a point of utilizing a variety of them so that I wouldn’t get bored. What I found was that I really do love using the meditation apps on my phone because no matter where I am I have my phone by my side and it was easy to just click on the app and select a meditation. I actually created an app “Meditation” folder and put it on the home screen of my iPhone so that I would see it throughout the day. I can’t tell you how many times I ended up meditating because I glanced at this folder when checking my emails.
In addition to the ease of using apps, I really like how some of the meditation apps, such as Insight Timer, keep track of your progress which I found REALLY encouraging and motivating.
As for types of meditations, I really found “body scan” meditations really helpful for when I was feeling pain and even when I wasn’t. I am slowly learning to just “be present” with my pain through the use of these types of meditations.
5) Pick a realistic time of day to meditate each day as well as a realistic length of time
I originally said that I would meditate after eating breakfast. That happened exactly ONE time! I quickly realized that upon waking up I enjoy activating and stimulating my brain (ie. reading the news) not meditating. To ensure success I knew I had to choose a different time so I started meditating once I got into bed at night. The only problem with this time I realized what that I often fell asleep during the meditation. So I revised my goal time to the broad period of “after dinner but before bed”. This ended up being the most successful goal. The result has been that I have ended up meditating at all times of the day with evening being the most common time.
As for length of meditation, I have been meditating between 5 and 45 mins. per day. My original goal was 10 minutes per day so I am happy with what I have been managing to do. Some days are less than 10 mins but others are much longer. I would say that overall I probably average 15 mins. per day. I often find that I start with a short guided meditation but I enjoy it so much that I do another longer one right after the first.
6) Report back to someone
I told my therapist about my 21-day meditation commitment. I provided her with an update after one week of meditating and told her how I was going to amend my practice to be even more successful. I am to report back to her next week again. I think having a specific person to check in with REALLY increased the feeling of accountability.
Overall I am really, really happy and proud of myself but I don’t want it to end here. I want to ensure that I keep meditating every day. I also want to expand my meditation practice to include more specific chronic pain resources. So here are my next steps:
*I am going to keep doing all the steps in my 6-step process. I think it would be too easy for my practice to wane if I am not checking off a checklist, reporting back to my therapist, etc.
*I am going to incorporate more specific “chronic pain” meditations such as those by Jon Kabat Zinn and Peter A. Levine, some of which are listed on my website’s Meditation page.
*I am going to do more healing visualization guided meditations. I will try and see if there are any guided visualization apps for iPhone.
*I will report back here with another blog post!!!
I am always looking for more resources, inspiration, and suggestions so I would love to hear from you! Happy meditating!
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Internal Disc Disruption/Derangement (IDD) 2. I was diagnosed with it in the year: 2012 3. But I had symptoms since: 2008 4. The biggest adjustment I’ve had to make is: Not being able to participate in even the most normal day-to-day activities as I am unable to sit, stand, walk etc. the majority of the time. 5. Most people assume: I look great so I must not be as disabled as I am. 6. The hardest part about mornings are: Waking up and realizing a have another day to persevere through. 7. My favorite medical TV show is: I don’t have one. 8. A gadget I couldn’t live without is: my camera. 9. The hardest part about nights are: waking up from dreams in which my body is working normally. 10. Each day I take __ pills & vitamins. (No comments, please) A couple of non-narcotic meds and many vitamins. 11. Regarding alternative treatments I: have spent thousands of dollars trying everything with no results…acupuncture, acupressure, cranio-sacral, Reiki, healing touch, plasma injections (that athletes use), prolotherapy, body-mind therapies, visualization, etc. 12. If I had to choose between an invisible illness or visible I would choose: hard to choose…I am grateful that I look “normal” but daily I wish I had a way of showing people what I am truly dealing with each and every second of the day despite my “normal appearance”. 13. Regarding working and career: So sad to know that I will never have either again so I have to find purpose some other way which is hard to do when I spend 90% of my day laying horizontally. 14. People would be surprised to know: that to get anywhere I usually have to lay horizontally in the back seat of my car and have someone drive me. 15. The hardest thing to accept about my new reality has been: I may be this disabled forever and I am only 39. 16. Something I never thought I could do with my illness that I did was: keep on persevering through it all. 17. The commercials about my illness: there aren’t any. 18. Something I really miss doing since I was diagnosed is: sitting…to drive, to eat my meals, to watch a play, to fly, to watch a movie, to watch my nephew’s play sports, etc. 19. It was really hard to have to give up: the reality that I will never travel by plane ever again. 20. A new hobby I have taken up since my diagnosis is: blogging. 21. If I could have one day of feeling normal again I would: hop on a plane to Kenya…a lifelong dream. 22. My illness has taught me: life is not fair, good health should be cherished every single moment, nothing should be taken for granted. 23. Want to know a secret? One thing people say that gets under my skin is: “have you tried…” 24. But I love it when people: say “Wow, you are so strong to handle how you have to live your life. I bet not many people realize how hard it must be.” 25. My favorite motto, scripture, quote that gets me through tough times is: “At the end of the day, we can endure much more than we think we can.” – Frida Kahlo 26. When someone is diagnosed I’d like to tell them: stay strong, no matter how alone you feel, you are not. 27. Something that has surprised me about living with an illness is: how there can be so few medical solutions or answers to my situation and so many other people’s. 28. The nicest thing someone did for me when I wasn’t feeling well was: My Mom has repeatedly dropped everything to take care of me and comfort me. 29. I’m involved with Invisible Illness Week because: I really want people to learn not to make any assumptions about someone’s health based on their external appearance. 30. The fact that you read this list makes me feel: happy.
Despite research showing that mindfulness-based meditation is very beneficial for those of us dealing with chronic pain/illness, I have yet to maintain a daily committed meditation practice. I have definitely tried…I have taken meditation classes through the pain clinic at my local hospital, as well as online classes, I have mindfulness apps on my phone, I have chronic pain mediation CDs, YouTube mindfulness videos favourited, and I own many books on the topic. I have resources galore but somehow after a week or two of meditating I stop. Often a month later I will start my practice again. I don’t think I am alone in this start and stop relationship with meditation. Am I? Please tell me I am not!
As my level of disability and pain increase, along with corresponding depression, I recognize that I truly MUST make meditation be part of my daily routine. This time I am adopting a multi-step preparation approach to ensure I stick to my goal of daily meditation! I would love for you to join mefor the next 21 days (this is the length of time it apparently takes to make a practice a habit!).
6 STEPS TO PREPARING FOR A 21-DAY MEDITATION CHALLENGE
1) Make a public commitment to meditating I am writing this blog post. 2) Make a daily checklist or write daily meditation time on a calendar I have printed a checklist and hung it on my fridge. 3) Create reminders I am setting my phone to remind me daily. Once at 10am and again at 4pm in case I chose to ignore the first reminder! 4) Make a list of meditation resources for quick reference My resources are listed after these steps (see below). 5) Pick a realistic time of day to meditate each day as well as a realistic length of time I am choosing to meditate after I eat my breakfast cereal which is the first thing I do each morning.
I am committing to meditating a minimum of 10 minutes per day but with the hope that I will do more. 6) Report back to someone I am reporting back to my therapist in two weeks.
I am also going to do a follow-up blog post.
I encourage you to follow the steps above or create your own. I would love to hear what additional steps or ideas you think would be help yourself and/or others to stick to a 21-day meditation challenge.
MY FAVOURITE CHRONIC PAIN MEDITATION RESOURCES I have used ALL of the resources below so I can personally say I found them valuable. I will put this list of meditation resources on the Meditation page of this website so you can refer back to them in the future. I will also add additional resources and details to the Meditation page that aren’t in this blog post.
I am honoured and thankful to Nicole, at Born a Lemon, for nominating me for a “One Lovely Blog” award! I still have a long way to go with my blog but this award encourages me to work harder at it. As per the award guidelines here are…
7 Random Facts about Me:
I own a glittery ten-pin bowling ball with my old bowling name “Princess” engraved on it.
I once took a Speedreading course so I am a super fast reader.
My most proud accomplishment was raising money for a young woman’s kidney transplant in Kenya. We are still very close friends and hope to meet each other one day.
I can’t watch or hear anyone brush their teeth. I get goosebumps all over and freak right out!
My middle name is “Gesine”. I am named after my aunt and grandmother who live in Germany. If I would have had a daughter I would have passed the name on to her.
I have numerous “tickle trunks” and love to dress up in wigs and costumes.
The most rewarding job I ever had was working for the John Howard Society, helping male prisoners prepare for their release from prison.
My nominations for a “Lovely Blog Award”:
Life in Slow Motion – the words on this blog so accurately capture what it is like to live with chronic pain.
Para Las Fridas – a fellow Frida lover and super talented woman who is a disability and human rights activist as well as visual artist. Her blog, too, shares what life is like with chronic illness and pain.
Chronic Fatigue Warrior -the following isn’t a blog but she has my favourite Facebook group about chronic illness/pain. I love her artistic soul and she shares some great stuff!
A Bowl of Cherries – Grace’s blog has already been nominated but I can’t help give a shout out to her and her blog…both of which are beautiful! She is a courageous woman with a big heart whose blog is a combination of her lovely photography and thoughts on life.
The Late Bloomer Revolution – Michelle’s lovely designed blog offers “complimentary seeds of inspiration, humor and mildly irreverent advice on how to awaken your inner bloom.
Sweet Sunflowers – A fellow photographer and life coach whose “helps her clients to visualize their dreams and take first gentle steps”.
Lolalina – Laura Gaskill’s serenely beautiful blog offers so much – inspiring “interiors, decor, food styling, flowers, art, and craft”.
B’s Bytes – a wonderful artist, writer and photography who shares a lovely sampling of each on her blog.
I know I was supposed to list 15 blogs but I only read a few at this point. I like to think of this as quality over quantity!
Guidelines for the One Lovely Blog Award:
Thank the person who nominated you for the award;
Add the One Lovely Blog Award logo to your post, your blog or both;
Share 7 facts about yourself;
Nominate 15 bloggers who you admire and consider “lovely.” Let the nominees know they have been nominated by commenting on their blogs.
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?