We’ve all seen articles telling us how to ‘indulge’ in self-care in a curated, Instagrammable, Pinterest-worthy way. You know, bubble baths and pedicures, mojitos with your friends and charcuterie boards. And that’s… nice for those who can manage it. But if you read those articles, and the very thought of all that is exhausting and makes you want to cry, read on… we’ve got you covered.
What is Self-Care?
Here’s the thing: Self-care means anything that you do for your own good. And, just like Maslow’s hierarchy of needs, we can classify self-care in a pyramid.The bottom of the pyramid? Things like: taking your meds, brushing your teeth, getting out of bed (with or without getting dressed), making yourself eat. And if those are too much, try and think of the smallest thing that you could manage to do in your day, and prioritize. It’s probably more important that you eat something and take your meds than get dressed or brush your teeth. Of course, those things are important, too, but when you’re in crisis, you need to choose the absolute essentials.
Once you have the basics covered, the next most important thing is to add in some joyful things which will fill your cup. Are you rewatching all of Star Trek in order? (That’s mine!) Do you like to knit, crochet, paint or draw? Do you have ‘$20 in your pocket’ and enough energy to make it to the thrift store? Can you make it out for a Starbucks with a friend?
Self-Care is Necessary
If you find yourself struggling with self-care, try gently asking yourself why. Are you exhausted and in chronic pain and it’s just physically difficult to do tasks? Are you in the bottom of a depression and shame spiral and you don’t feel like you’re worthy of love and care? Do you feel like any time, effort or money spent on yourself is ‘bad’? Maybe some of these things are issues to take up with your doctor and/or counsellor. If you are struggling with everything, including eating and taking meds consistently, it may be time to make a decision to ask for help.
Make Self-Care a Judgement Free Zone
Things that tend not to be helpful: Beating yourself up about what you ‘should’ be able to do, or listening to helpful relatives suggest that ‘if you just got to bed at a decent time’ you’d be able to do everything with ease. In order to work on making changes in our lives, we first need to accept where we are – without judgement, shame, blame or self-hatred.
It can help to find someone whom you admire who has also struggled with similar issues. For example, one of my favourite authors, John Green, struggles with intrusive thought spirals due to OCD, like I do – and it makes me feel just a little bit better.
If you struggle with certain self-care tasks, look for alternatives. Please know that many, many people have specific struggles with tasks like showering, brushing their teeth, visiting the dentist or doctor, taking their medications, etc. Instead of looking at those Instagram-perfect lives, use social media to your advantage, and find YouTubers and TikTokkers who understand what you’re going through and can give you some ideas:
If you struggle to take your meds, think about whether it’s a problem remembering (and put them somewhere you will be sure to see them every day), or a mental struggle (you may have to bribe yourself with a treat, or get a loved one to check in with you to help you to be consistent).
Dentists and doctors: if you have fears or specific issues, it can seem overwhelming to tackle medical appointments. Here’s the time to take your loved ones up on their offer to advocate for you, and let them take care of scheduling, transport, being with you and checking in on you during the appointment if they recognize that you are overwhelmed.
It can be hard to work on decorating your space when you don’t have a lot of energy or motivation, but if you spend a lot of time in your room, it’s important. There are resources which can help you. Try this YouTube video for some good ideas: https://www.youtube.com/watch?v=ABof7aqVSoQ
The Best and Bravest Decision
Deciding to work on self-care is a very brave decision. And one of the best ways to do that is to ask for help. This is often really hard! But you probably know some people who would be happy to help if they just knew what you needed. This might involve swallowing your pride a little bit. It takes courage to let even a trusted person into your space when it’s messy or dirty. I 100% promise you that they are not judging you like you are judging yourself. I also promise you that if they were living your life right now, they’d be struggling, too. This isn’t about your sickness, disability or lack of motivation. It’s about figuring out what you need to in order to create a life worth living.
So, self-care can be hard. And yes, that sucks. But it’s the foundation which will allow you to build towards all the good things that are waiting for you. Remember that every tiny act of self-care you can manage will build up into a forward momentum towards feeling better.
What is a chronic pain? This term is tossed around so freely nowadays. I don’t think there is one person who isn’t either affected themselves or knows someone who uses this term regularly in describing themselves or their situation. It seems like the pain is all around us!
According to Neil Pearson, who teaches at UBC, lectures worldwide, and has been working exclusively with patients who suffer from chronic pain for over 20 years, “Scientists explain aspects of chronic pain through explanations of neuro-immune plasticity. They are able to show that when pain persists there are relatively permanent changes in neural and immune systems and cells. The problem is that attempting to change these back takes effort, practice, and patience. Our efforts are required, to rewrite this story and to create lasting ‘positive’ neuro-immune changes…and most include disruptions of breathing and muscle tension. For many of us when the story has continued to play for some time, it includes changes in our feelings of competence, difficulties in letting go of tension, being out of balance in life, being disconnected from our life’s purpose, and as such, if we direct our yoga practices (or any contemplative movement practice) towards these, we can rewrite the story.” Persistent, chronic pain requires a different approach for healing than acute pain which usually goes away eventually on its own.
What Yoga Therapy provides is an individualized practice specifically aimed at your needs.This is why it’s important to view yoga therapy as a physical and/or rehabilitation process, not a studio style practice, and also includes integration of practices for mind and breath. We teach students to experience their practice from the inside out. It’s not about how it looks on the outside, it’s about how it feels on the inside.
Viniyoga™ methodology specialist Gary Kraftsow is part of the lineage that I am practicing under. There are several principles that separate this method from others and create its effectiveness in the healing process, and these include:
Somatic Experience – practicing and feeling from the inside out, not focusing on what you look like on the outside, and befriending your body
Moving with your breath – allowing your body and breath to move in unison, learning to follow your breath
Repetition and Stay – the choice to move in and out of a shape or pose, or hold it for several breaths depending on your comfort level
Individual Sequencing – a collaborative approach where you and your teacher create a practice that is unique to your needs and makes appropriate changes as you progress.
The physical part, called asana, a portion of your practice uses a technique to empower you to check in with your body before and during a posture. First, by going to the edge of pain, that is your baseline, or where you start from. This prevents the sympathetic nervous system [SNS] from firing up, thinking you are going to a place of pain or danger and tightening up even more. You will find yourself forming new habits such as asking yourself, “Is this safe, am I going to increase pain, is this working for me, am I ok here?” By always starting from a place of comfort, listening to your body rather than to generalized cues, and by working through a complete practice in this way, you will begin to change your perceptions of your pain, and notice as it decreases. You will learn breathing practices to integrate relaxation and create the space for your body to move into. Your movement will eventually follow your breath and you will practice breath awareness, noticing the quality of your breath. Your thoughts are reflected in the quality of your breath and your breath is a reflection of the quality of your thoughts.
You will also learn positive mindfulness techniques to change how you perceive your pain and start to work from a place of comfort. This allows you to move away from the painful story toward a place of feeling comfortable in your body again and reconnecting with your true self. This part of the learning may also involve surrounding yourself with positive minded friends and supportive people, or be joining a group of others who also want to play a meaningful role in their personal healing.
Restorative Yoga poses are vital to bringing the body into the Relaxation Response,where the parasympathetic nervous system [PNS] replaces the fight, flight or freeze state of the SNS, taking you to a place of deeper relaxation where healing of the body and mind can take place.
There are many studies that are ongoing in support of evidence-based knowledge regarding Therapeutic Yoga. In the International Journal of Yoga Therapy [IJYT], No.26, 2016, Mindful Yoga Pilot Study Shows Modulation of Abnormal Pain Processing in FibromyalgiaPatients, J.W. Carson et al. report that their, “program showed significantlygreater improvements on standardized measures of fibromyalgia symptoms and functioning, including pain, fatigue, stiffness, poor sleep, depression anxiety as well as improvements in measure of relaxation, acceptance, and vigor.”
In my teaching of therapeutic yoga, I have witnessed the physical and lifestyle benefits for my clients. I am currently midway through my Certification of 1000 hours as a Yoga Therapist, (CYT) with Maggie Reagh, founder of Yoga Therapy International, and look forward to many years of service to those who are searching for a path to healing. With loving self-awareness and compassion for yourself, learning to listen to your body’s whispers so that it won’t need to scream, and letting your body know it’s OK to let go and breathe, you will come to know that you are not your pain! Listen to your body more than you listen to your pain.
I’ll be away in India for further training through January and February but I look forward to reconnecting with clients in March. We have brought on another colleague to provide therapeutic yoga in my place while I’m away, Janet Richardson, and I’m excited for you to meet her! Please look for the announcement on our website and social media soon! Until March, may peace be with you and your families through the holiday season, and I’ll be sending warm thoughts from the warmth of India!
You wake up and it’s still there; that dull pain in your body that reminds you of your chronic condition. You feel like staying in bed all day, but you know that would leave you in even worse shape. So, what can you do to get through the day? Here are five ways to manage daily chronic pain:
Begin to breathe – with intention.
Yes, breathing is essential to live, but doing mindful breathing can calm our body, focus our mind, and alleviate stress. Sit comfortably with your eyes open or closed. Start by breathing in and out, noticing the rise and fall of your breath, and the sensations in your body (shoulders, stomach, nostrils). Notice all the sensations all around you (smells, sounds, presence). Take deep breaths through your nose as slow and controlled as possible, and exhale through your mouth as slow and controlled as possible. Try to make this process of breathing in and out last for a total of 7 seconds or more. Refocus your gaze to end the exercise.
Be realistic of daily goals.
The busyness of life doesn’t stop for someone who has chronic pain. Those of us who have daily pain, however, need to prioritize daily activities and goals based on how we are feeling on any given day. It’s a hard pill to swallow realizing that we can’t do it all. Start with having just one or two things on your “to do,” list for the day, week, or month. Empty the dishwasher, check. Pick up library books, check. Starting small and completing a short list of manageable goals will reward you with a great sense of accomplishment.
Even though our natural tendency is to want to curl up in a ball when we are in pain, staying stationary is one of the worst things we can do. Our brain and body need stimulation and range of motion to heal and to cope with pain. Staying active may look different to people based on their pain. For some, a successful active session can be as simple as walking down the block and back each day and for others, doing moderate cardio activity for 20 mins a couple times of week is right for them. Change it up every once in a while to make exercise fun and interesting. Don’t forget to add some intensity or to lengthen the duration of your exercise sessions every now and then. Doing too much too soon may backfire, but test your limits – you never know if you can do something until you try!
Alternate your day between periods of activity and periods of rest. Start by setting aside just 30 mins of your day to rest your body and mind well. By well, I mean ‘set the stage’ to help you have the best rest possible. Based on your pain, find a comfortable place to rest with some of the following: low light, heat pack, ice packs, eye patches, soft music, a mindfulness meditation app or even have a hot bath. Maximize your time of rest and it will help get you through other parts of your day!
Tap into your spiritual side
Yes, this may be uncharted territory for some, but reading, journaling, praying, making art, or listening to something meaningful can help you to self-reflect, manage your emotions, set goals, and can really put things in perspective. There are times in your chronic pain experiences where you will need to draw inner strength, so make sure to build it up!
For many of us, chronic pain is here to stay so we might as well learn how to cope….HAVE HOPE.
Meg Neufeld, (MA) is the co-founder of Alongside You, an integrated health clinic that offers yoga, pelvic rehab, registered dietitian services, clinical counselling, group therapy, and therapeutic arts. As a cultural anthropologist and an artist herself, Meg seeks to make art accessible to people of different abilities, diagnosis and age. She is trained in Mindfulness-Based Art Therapy practices and has a particular interest in using art as a pain-management strategy in her own life.
Most of us have felt physical pain before: we’ve pulled a muscle, had a headache or bumped our funny bone (which really isn’t very funny at all!). The pain we experience is our body telling us something is wrong and after a period of rest and healing (up to three months), we can typically go back to normal activities. Chronic pain is when our brain is in an ongoing state pain and heightened sensitivity that persists longer than 3-6 months. Despite common understandings of pain as being a purely physical reaction, pain is actually directly linked to our brain and nervous system. This video highlights the complexities of our brain and nervous system and identifies the ways in which medication, exercise, diet, medical procedures and emotional processing can help retrain the brain and improve the quality of life for those who suffer from chronic pain.
Whether persistent pain takes the form of back pain, migraines, arthritis, fibromyalgia, endometriosis, lupus, other invisible illnesses, the chronic pain experience affects the body, mind, and soul. While each person’s experience with pain is different, there is a range of common threads:
Everyone has their own definition of a good day and a bad day. Simple tasks may be manageable one day and not the other.
In order to “self-manage” daily symptoms, there is a constant need to balance or carefully plan periods of rest, work, exercise, social activities, diet, sleep, and spiritual connectedness.
It is challenging to talk to family and friends about our pain. The impact on family and friends can be devastating as roles, expectations, and relationships change because of the pain.
Pain is challenging to treat. The constant rotation of medical appointments, medications and medical procedures can be exhausting and what may work for one person, may not for another.
Chronic pain goes hand-in-hand with mental health and evokes strong emotions as attempts are made to cope with a loss of purpose, former abilities and relationships.
How can we tackle chronic pain?
The chronic pain experience is riddled with complexities; it has both physiological and psychological components, making a holistic approach in tackling chronic pain the most effective way to approach treatment planning. This video highlights the importance of a multi-disciplinary approach. As a result, we need to find ways to reboot our nervous system, learn productive skills to manage our symptoms, help educate others on chronic pain experiences, and strive to have a better quality of life.
HOW MINDFULNESS-BASED ART ACTIVITIES CAN HELP PEOPLE WITH CHRONIC PAIN
“Art gives a face to the ambiguity of chronic pain …
it gives a visual expression to something that is often elusive.”
–Dr. Steve Feinberg, American Chronic Pain Association
What are the overall health benefits of making art?
Using art for its health benefits is widely becoming a critical component of healthcare. Art helps us explore, practice and develop our creativity as a means to promote health and well-being. Making art has several benefits in key areas:
Mental Health: Making art reduces stress, protects against depression and anxiety, can improve self-confidence[i] and encourages positive self-care. Doing something creative in a supportive and safe environment encourages experimentation and risk-taking, two essential qualities of the art-making process.[ii]
Social Health: Those that participate in creative activities are more likely to have wider social networks with people from different backgrounds, have a sense of belonging, and are less likely to be socially isolated and lonely.
Brain Health: Art making is an effective preventative tool in managing symptoms of diseases such as Dementia, Alzheimer’s disease, and other chronic conditions. It also improves memory processing, problem solving, and helps to maintain neuro-spatial functions as we age.
Emotional Health: Creative engagement can provide a healthy outlet or path to healing for those who have suffered trauma, abuse, or significant life changes. Doing something creative can act as a distraction tool and is another way to preserve self-identity and move forward.
Using Mindfulness-Based Art Therapy (MBAT) techniques to tackle chronic conditions
According to Jon Kabat-Zinn, a leading researcher on mindfulness-based programs, mindfulness is, “the ability to become fully present in this moment, in a particular way, with a non-judgmental attitude.”[iii] Combining mindfulness skills while making art can be an effective way to manage symptoms of depression and anxiety, improve pain tolerance, and elevate the quality of life of people with chronic pain [iv][v] and illness,[vi] including those with arthritis[vii], Dementia and Alzheimer’s disease[viii], and cancer.[ix]
Why does MBAT work for chronic pain management?
Mindfulness is a frame of mind; a decision is made to intentionally pay attention to the present moment when doing an activity. It is an effective way for the brain to concentrate on surrounding senses other than the pain itself. It involves resting the physical body (doing body scans) and the psychological mind. Art therapist and facilitator Margaret Jones Callahan describes mindfulness-based art therapy (MBAT) as the “appreciative inquiry mindfully applied to the empty page or the open space. The practice of holding one’s awake attention fully in the present moment, non-judgmentally, while in the act of creating and expressing,[x] acknowledges the presence of pain and helps to get through it, moment by moment. While mindfulness is the lens in which to approach a particular moment, making art is the vehicle with which you experience it. Mindfulness-based art therapy:
Promotes both the healing and rehabilitation process and is a way for chronic pain sufferers to “’lose themselves’ in the moment,”[xi] (also known as “being in the flow”) giving the nervous system a break.
Provides temporary respite from physical symptoms of pain (headache, nausea)
Is an effective method of distraction and promotes positive self-management skills to filter emotions and is a way to express suffering.
Can build social alliances, companionship, and social affirmation, creating a wider support system with family, friends, and peers. Making art with others lends another way to talk about or communicate with others about pain experiences.
Allows space to be self-reflective and helps monitor growth and progress in a visual manor.
Affirms a sense of control over surroundings in the decision-making process of selecting colour, shape, and images.
At its core, MBAT, strives to create a peaceful environment where one can be completely absorbed in the moment while immersed in the process of creation. Along with healthy changes to our diet, sleep, and exercise regimes and with attentiveness on empathy, intentionally putting time aside to do something creative (read, write, paint, knit, sing, do yoga[xii], or dance) can help lower stress levels, give our nervous system a rest, and helps to promote self-care habits. By using a variety of creative processes, health difficulties can be better expressed, understood, accepted, and transformed.[xiii]
If you’d like to experience how MBAT can help you manage your chronic condition, please feel free to give me a call, or email, or come to our Open Studio Sessions where we go through many of these techniques! Give art a try!
[vii] Reynolds, Frances and Sara Prior. Strategies of Adapting and Replacing Artistic Leisure Occupations to Maintain Participation and Identity: A Qualitative Study of Women with Arthritis. Journal of Activities and Adaption and Aging, March 2011. http://www.tandfonline.com/doi/abs/10.1080/01924788.2010.545970?journalCode=waaa20
[ix] Monti, Daniel W., Caroline Peterson, et al. A Randomized, Controlled Trial of Mindfulness-based Art Therapy (MBAT) for Women with Cancer. Thomas Jefferson University, Philadelphia, PA, Psycho-Oncology 15:363–373 (2006)
[x] Callahan, Margaret Jones. Mindfulness Based Art: The Sparks Guide for Educators and Counselors. Friesen Press. 2016.
Last week my wife, Meg, wrote about her journey with her invisible illness and chronic pain, in her article titled My Life With Chronic Pain; the feedback has been phenomenal. We’ve heard from people close by, and as far away as New Zealand who appreciated her candor and vulnerability in sharing her struggles and what she has learned over the last 6 years since the car accident. So many people struggling with invisible illnesses feel isolated, alone in their journey, and feel as though they can’t share their struggles because it’s viewed as complaining, or because people simply do not understand.
This week, I want to share a bit of my story over the last 6 years, as a husband to a wife with chronic pain, and father to our two beautiful daughters who have also been a part of our journey. As little information as there is from those suffering from invisible illnesses, I come across even less information from those who are alongside those struggling with the illness, such as partners and family members. I hope that sharing my story can be helpful to those who are also wrestling with this complex, often heart-wrenching journey.
As I was driving into Vancouver this morning, I was trying to figure out how to start what I was about to write – how to sum up concisely the impact of the accident, and my wife’s struggle with her chronic pain. I’m also fairly guarded in sharing my emotional world publicly for many reasons, but I came up with a very succinct and specific conclusion: it broke my heart. Even as I sit here at the Railtown Café writing, it’s all I can do to hold back the tears.
You see, for better or for worse, I have always put Meg on a pedestal. If you’ve met me in person, you’ve likely heard me refer to her as my “far better half,” or comment on the fact that she is the “smart one.” This isn’t pithy banter on my part – it is truly the long-held belief about Meg that I have held, and still do. What I wasn’t prepared for, however, was the impact of seeing my brilliant, high functioning wife, laid out on the couch for weeks on end, unable to function in daily life, and struggling to figure out how many plates she needed to put on the table for dinner. I can’t begin to describe how seeing this changed my life, and changed my focus.
I immediately went into survival mode. I was working for the Fraser Health Authority at the time, and immediately started seeking out jobs closer to home as I was suddenly the only functioning adult in our house, with two children under the age of 4. I was Dad, Mom, housekeeper, breadwinner, and more. Now, I have to say that we have been so fortunate to have an unbelievably supportive family and friends who have given us an amazing amount of support for which I am extremely grateful. I honestly have no idea how we would have survived without them.
Even with all of this help, and even as we started seeing improvements, I was and quite frankly, still am heartbroken. When I’m working with kids, parents, and families I often explain that one of the hardest things in the world as a parent is to see your child in pain; I’m not sure, however, which is worse: seeing your child in pain or your spouse. At this point, I was seeing both and it was overwhelming.
If we fast forward to present, things have gotten significantly better and while Meg can never return to her career, she is forging a new career using art and helping people recover. Although it’s still difficult, it’s amazing to see the changes and to be able to see the proverbial, “light at the end of the tunnel.” What I’ve discovered though is that I’ve been stuck in “emergency mode,” since 2011, and as a part of this, haven’t processed a lot of the emotions involved and the personal trauma involved in the experience.
Part of my struggle and what I’ve been working through is how to move from heartbreak to acceptance (and Meg will find this hilarious because acceptance is a regular topic of conversation between us, mainly my encouragement to her to find acceptance in her new life and role). I’ll admit, I do not want to accept that my wife has chronic pain, and that the wife I knew prior to 2011 is never coming back. I don’t want to accept that our lives have changed irrevocably through no fault of our own, but because of a car accident. I don’t want to accept that my children have had to endure two parents in emergency mode for 6 years and have had their own challenges in response. I don’t want to accept – well, a lot of things. But as I preach to my clients almost on a daily basis, I have to choose to accept because the alternative isn’t helpful. I can’t change the situation, and fighting it isn’t going to bring positive results.
As I’ve wrestled with this for the past 6 years, I’ve learned a few things that have been, and continue to be helpful to me in managing our family life and my own emotional world. I haven’t mastered any of them yet, but hopefully they’ll be helpful to those of you sharing the struggle as a partner of someone with an invisible illness and/or chronic pain.
Talk to your partner with the chronic pain about the impact it has on you
For many years I struggled to share with Meg how her journey impacted me. To be honest, it’s something I still have a difficult time with. When faced with a partner who is in constant pain, it’s hard to justify your own sometimes. I’ve had times where I told myself, “Your pain isn’t important; look at how much pain she is in,” or, “If you tell her how you’re feeling it’s going to make things worse for her,” and many other variations on this theme. What we’ve discovered in discussing this point is that she has had many of the same things running through her mind and we didn’t realize it. Being able to talk about our fears in disclosing to each other has opened the door to a much more honest and helpful dialogue.
If you won’t let yourself go there, please hear this from me – your pain is just as important and your ability to connect with your partner and be supportive depends on being vulnerable.
Feeling helpless is normal and part of the process
Anyone who knows me well, knows that I am a fixer. I look for problems and try to find solutions – I probably would have made a good engineer that way if it wasn’t for the math. I have had to wrestle with my own helplessness over the past 6 years and sit with my own fears and anxieties about the future in ways I’d never experienced before. As a husband, I want to save my wife from experiencing pain but I can’t. I’ve had to accept this, even though I don’t like it. I’ve had to come to terms with the fact that I can’t fix her body, I can’t fix her brain, and I can’t save her from the pain. But, I can be there consistently, unwavering in my love for her, even if I can’t make it all ok.
Empathy is more important than fixing things
We sometimes struggle to differentiate between sympathy and empathy. Brené Brown has a great video on empathy, and I encourage you to watch it here. In short, empathy is the best thing that we can offer a partner who is in pain. It’s being able to say, “I don’t even know what to say or do right now to help you, but I’m here.” It’s realizing that even though we can’t truly understand what our partner is going through, we don’t have to. If we can allow ourselves to be vulnerable with them, we can connect with their experience of the pain, not try to fix it, but be there. Being with someone on a deeper level is far more important than any fix we can offer. It cuts down on loneliness, isolation, disconnection, and thus, reduces anxiety, depression, and actually, it reduces physical pain. So, it’s true – we can actually help our partner’s pain by showing them empathy, being with them where they are at, and accepting the situation we find ourselves in and wrestling through it together.
Have fun together
There’s a saying that we all know – laughter is the best medicine. I’m not sure if it’s the best medicine, but it sure does help. Physical and emotional pain often shifts our focus off of living life and from the patterns and ways of relating to each other that have made the relationship successful. Meg and I have always had a healthy dose of humour in our relationship – mostly laughing at idiosyncrasies in life, mistakes we’ve made, or situations we find ourselves in.
One thing that chronic pain does is make it difficult to find humour in the current situation. Who laughs about pain, right? Well, we should. It took some time, but now Meg and I can laugh about some of the things we experience in life due to the chronic condition. Whether it’s laughing when a plate drops because of ulnar neuropathy, or laughing when I ask her to do something that is very obviously not possible for her and she just stares at me with that look that says, “What part of that looks like something I’m able to do,” or laughing about things that have nothing to do with our situation but make us laugh and relieve some stress, the humour allows us to lose sight of the pain for a while and get back to “normal life,” again.
Don’t be afraid to ask for help
I have had to lean on more people in the past 6 years than ever before in my life. Asking for help is not something I’m particularly good at. My family, my friends, and my professional colleagues have all stepped in to help in so many ways and I can’t thank them enough. I’ve also had to do some counselling, and continue to do so because there are aspects of my life and my wrestling that I need someone to walk through it with. My counsellor has shown empathy, skill, and also challenged me when I need to be challenged. Whether you’ve sought counselling before or not, I can’t emphasize enough how important it has been to my journey.
Adjust your expectations, and redefine “normal life”
As much as I’ve tried to take a positive spin in this piece, there is no escaping the fact that chronic pain and illness brings an incredible sense of loss with it. There’s no escaping the fact that the life we had prior to 2011 is, to the best of our knowledge, never coming back. I have mourned this fact for years, and to be honest, I’m still in that process. What I’ve come to, however, is that in accepting the situation I’m able to redefine our new normal and my expectations. What does this mean for me, and us a family?
It means that I’m the only one unloading dishes from the dishwasher and I do most of the loading because bending over is too hard for Meg most days. The upside is that I can load it however I want and make it efficient, which gives me joy.
It means that many nights, Meg isn’t able to put the kids to bed because she is lying on the couch downstairs and making it up the stairs isn’t in the cards that night. The upside is I get 1:1 time with my daughters, which is time that I cherish and probably wouldn’t have had otherwise.
It means that most nights, we find ourselves on the couch in front of the TV watching some silly TV show because we’re too tired and brain dead to do much else. The upside is, we get to sit in close proximity to each other, and laugh at the shows we are watching, and sometimes when we both have the energy, the TV doesn’t go on and we sit and talk for hours like we used to and connect on a deeper level. This doesn’t happen as often as either of us would like, but when it does happen, it breathes life back into us and into our relationship.
It means that having gone through the past 6 years, I am convinced that I am incredibly fortunate. I have two beautiful children who I adore, and who love Meg and I unconditionally. I have a wife who, despite all my shortfalls and mistakes I’ve made both before, and since the accident, chooses to love me for who I am and all my limitations. I have been forced to spend more time with my family and around the house because I’m needed there to pick up some of the slack – time that I may not have otherwise taken if Meg was functioning at 100%.
Last but not least, the accident was a major motivating factor to launching Alongside You, where I get to see peoples’ lives change on a daily basis. And because of our experience through the accident we can say that we understand the pain of many of our clients because we also live it on a daily basis. While I won’t speak for Meg, although I’m sure she’d agree, Alongside You has provided meaning for my pain. While I still don’t like the situation and the pain Meg is in, there is an emerging sense of purpose. I know that our experience has allowed me to help others through their own journeys in an authentic way that I would not have otherwise been able to.
At the risk of being repetitive, I want to repeat the quote from my daughter Ava because she has been a great source of wisdom for me in our journey, and I honestly can’t put it any better than she did.
Just because you have a hard life, it doesn’t mean you have to have a bad life. With challenges or disabilities, you can still have a great life. – Ava Neufeld, age 9
As hard as it has been, I am grateful for our life. I am grateful for the support we have received, and for the personal growth I’ve gone through as a result of the accident and the journey through chronic pain. I’m also grateful for the chance to make some meaning out of our experience through our work at Alongside You. Meaning is so important in our lives, and in processing our pain.
Thank you for reading this, and thank you for allowing us into your lives as Alongside You.
Just because you have a hard life, it doesn’t mean you have to have a bad life. With challenges or disabilities, you can still have a great life. – Ava Neufeld, age 9
When my husband Andrew and I began to conceptualize Alongside You, we wanted to serve the needs of our communities in different ways. While it was our goal to build an interdisciplinary clinic, we sought to create a place where I could use some of my skills as an artist and anthropologist to design an environment where I could work at my own pace. You see, 6 years ago, a car accident on a raining day left me with daily chronic pain.
It’s not something I like to bring up, but because it affects my daily life, I am learning to talk about it more as well as raise awareness of invisible chronic conditions. Just like mental health issues, chronic pain is an invisible illness. I don’t have any visible scars, a cast, a cane, or even a service dog to alert others about my condition. In the last six years, I have struggled with constant and never ceasing pain. Every. Single. Day. For me and so many others with chronic illness and pain, persistent pain makes normal activities excruciatingly difficult. For some, every movement or breath takes effort and every day choices are made based on a delicate balance between periods of rest and activity. Every day begins with the struggle to keep up with those around us.
At the Beginning:
The past 6 years have been a blur. At first, migraines where so intense that they would last 24-36 hours every few days. While life continued beyond my bedroom door, I spent my time with ice packed all over my head, heat on my back, with earplugs in and eye patches on, to rid me of all things sensory. Balance issues, cognitive impairment and physical mobility were so strained that I was in bed for months and months on end, rising only for short periods of time. Impaired cognitive functions such as critical thinking, organizing, memory, emotion regulation, and reasoning made simple tasks such as making lunches or setting the table, impossible. When I was not in bed, I focused on rehabilitation that consisted of physiotherapy, acupuncture, massage, trigger point injections, Botox treatments, and inner ear and concussion testing. I was prescribed neurological medication to treat acute neck, head, and ulnar nerve pain, but each had their own side-effects. After a year of being unable to drive and relying on our friends and family to take care of our children, we came to the realization that things were not going to drastically improve, so we hired a nanny who took over all the childcare while I rested and went to rehab.
It was a couple of years before I felt strong enough to manage the kids on my own. Having been and “absent parent,” for the last few years, taking back the reins of parenthood presented challenges of its own. My children no longer saw me as an authority figure and sought comfort from others. As I got a bit stronger and with a series of medication changes, new and ongoing surgical procedures (nerve blockers, trigger point injections, medial branch cauterizations and Botox injections) I have slowly been able to reclaim my role. I would be in a very different place today if it weren’t for the help of supportive family, friends and rehab therapists and counsellors.
Matters of the Heart
Though my body is adjusting to this new state of pain, my spirit is still trying to digest a complex set of emotions as a result of the motor vehicle accident. Feelings of stress, anger, isolation, disappointment, anxiety, depression, and hopelessness go hand in hand in the journey of someone who lives with chronic pain. There’s anger over lost time with family; grief over the career you once had; frustration with daily physical pain and low energy that prevents the beginning of new ventures; disappointment with not being able to be consistent with family, work and friends; guilt over the burden you place on others with no hope of returning the favour, and so much more.
What keeps me going? My faith. It has sustained me and has played a huge role in my day to day functioning. It has provided me with guidance and has uplifted me in the ways I needed the most. I have also been regaining my sense of self by journaling daily. Reading back over previous entries reminds me of where just how far I’ve actually come. My abilities as a wife, a mother, daughter, twin, and friend have forever been altered. My job not only consists of taking care of my children and home and building Alongside You, it now includes spending time trying to prevent headaches and acute back pain by diligently trying to balance daily rest and activity. This includes a careful regime of exercise, daily rotation of heat and ice, visits to rehabilitation therapists, and has even led us to renovate areas of our house to make them more ergonomically sound. Chronic pain follows me wherever I go and dictates the extent of our plans, where we go, and what we do.
What I’m Learning About Living with Chronic Pain
The importance of approaching everyone with empathy
I have learned that because chronic pain is an invisible illness, others around me may be going through physical or mental health issues that are not immediately apparent. Would I turn back the clock to before my accident? Yes…and no. Of course, I would have liked being spared the pain and suffering caused by our accident, but it is because of it that I have learned so much about the human spirit and how to have more empathy for those with visible and invisible pain and have sensitivity when planning activities that are accessible to all.
“Be Kind. For everyone you meet is fighting a battle you know nothing about. –Toby Mack
This has literally changed how I interact with everyone I encounter.
Try to make peace with your situation
This is the hardest thing I’ve had to learn. With chronic pain, there is no end in sight. You yearn for what you once were able to do and you grieve the things you have not yet done. With good and bad days, your pain is out of your control and there is no real light at the end of the tunnel. This can easily lead you to feel depressed and hopeless. What you can do, however, is to make quality choices. You can make a choice every day of whether or not you are going to let the pain take over or to do something constructive with your time and effort. You can make choices (however small) of the things that give you joy or help you cope with your pain. We will all choose things that are different – for some it could be a pedicure to avoid bending down, for others it may be a soak in the tub, coffee with a friend, or a skill you want to learn. It’s all about managing your symptoms and creating a better quality of life for yourself. It’s about having a life worth living.
“You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.” – Josh Shipp
The need to educate others
Because chronic pain is invisible, it is sometimes difficult for others to understand what your life is like. Your husband, children, family and friends may have expectations of you that do not align with your abilities. It can be hard to let them know of the kinds of activities you are able to do or not to do, how long you can be active, and when you need to rest. Without people being able to gauge your abilities and tolerances, those around you may have unreasonable expectations of you. Those of us with unseen disabilities such as chronic pain, cancer, endometriosis, fibromyalgia, diabetes and more, know how much effort it takes to walk down the hall or the huge strain it is to complete simple tasks. Share your story with family, friends, and professionals. Describe your struggles. Your willingness to speak about your weakness can make yourself and others stronger. Adjust expectations. Remind your loved ones that some days you may be able to do a certain task, but the next day, you won’t. It may take some time for others to learn about your specific abilities and needs. Be gracious. Look up. Religious teachings or connection to your spiritual side can help us to reflect on our purpose, explore our spiritual existence, and meet like-minded folks who have the potential to be a group of caring people to add your support network.
“Behind every chronic illness is just a person trying to find their way in the world. We want to find love and be loved and be happy just like you. We want to be successful and do something that matters. We’re just dealing with unwanted limitations in our hero’s journey.” – Glenn Schweitzer
Knowing it’s okay to ask for help
Let’s face it, it’s hard to ask for help, especially if you need help frequently. For so many of us, asking for help indicates defeat, stresses helplessness and highlights our deficiencies. Sometimes, people don’t know how to help those with chronic pain. Reaching out to family, friends, and professionals, however, can change your quality of life in a positive way! Do regular check-ins with your doctor or rehabilitation practitioners who can help you at different stages of managing your pain. They are there to help you find strategies and ways to cope. This will not only help you track your progress, it’s a great way to network with other local people and services that can help you in your journey. Stressing about things we can’t control does not help the healing process but hinders it (physically and psychologically). Make choices by asking yourself, “If I do this activity, is it going to add to me in a positive way or can I have someone else do it?” Handing over control may make you feel vulnerable, but get to know your limits so that you can participate in other things.
“At any given moment, you have the power to say this is not how my story is going to end.” – Unknown
To live in the moment and celebrate small victories
“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.” – Mary Anne Radmacher
Mindfulness, or having a heightened sense of awareness to the present moment, can be a tool to use with the management of chronic conditions. Practicing mindfulness has been proven to help decrease stress and anxiety, aid in pain management, increase quality of life in cancer and Alzheimer patients and ease symptoms among those suffering from persistent mental illness. As we refocus our brain to be aware of the sounds, textures, smells, and what we see, we are actually giving our brain time to rest from being focused on pain. When we become more aware of our surroundings we tend to notice details and take pleasure in them. Something as simple as watching leaves fall, the wind blow, kids playing at the park, the crunch of fall leaves underneath you, can help you put your pain on the back burner for a period of time. Even that short amount of time can be restorative. As you relish in these daily experiences and are more mindful of how your body feels, there is an opportunity to take little steps forward. Take note of these small victories. These are little gold nuggets, ones you can look back on and remember them as stepping stones. It could be that you have been able to accomplish tasks that you haven’t been able to do in a long time: ride your bike, follows recipes, taking a new class, walk to the end of your block. Each of those little triumphs are golden nugget moments. Take time to breath, moment by moment, hour by hour, day by day. When you just can’t keep up, remember your small victories…they can reap huge benefits!
“The reason why people give up so fast is because they tend to look at how far they still have to go, instead of how far they have gotten.” – Unknown
I rolled my eyes at Andrew and others who suggested mindfulness to me because it’s not something that I knew about before, but it is something that has radically changed my wellbeing and I encourage you to try it. I did training in Mindfulness Based Art Therapy (MBAT) techniques as a way to use art in my own journey and now I use it with people in our art studio where I am the creative arts facilitator. I would love to have you at our Open Studio Sessions on Mondays or Wednesdays if you’re interested. Art is a great way of being mindful, and the research shows how effective it can be in our recovery. As an art facilitator, I hope to bring people together so that they can make meaningful connections with others.
Thank you for witnessing a part of my journey in reading this post and I hope it has been helpful for you in your own journey. Join us next week when we will share more posts about chronic illness.
If I, or anyone at Alongside You can be of any help please don’t hesitate to get in touch.