Myeloma Action Month Self-Care Q&A
Welcome to the Myeloma Action Month Self Care Q&A! As part of this year's Myeloma Action Month, Myeloma.org challenged the community to "bolster your resilience with a new self-care activity each day of the month." Keeping self-care in mind and as we wrap up Myeloma Action Month we asked some of our advocates what some of their self-care tips are.
What do you do for self-care?
I start and end each day with at least 30 minutes of deep breathing exercises and meditation. I also get outside every day, even when it’s 20 below zero to walk and play with my dog. I enjoy long, hot baths and showers, and I always finish with an ice-cold shower to relieve pain and fatigue. I take lots of naps. I stay up late if I want and sleep in whenever I can. I eat a mostly organic, nutrient-dense, and a plant-based diet. I try new recipes when I have energy and buy healthy, frozen dinners for when I am too tired to cook. I make myself cookies. I enjoy a glass of wine when I want one.
I watch old seasons of my favorite show, Survivor. I snuggle with my dog. I bought an easel and am learning how to paint. I buy myself books that I can't wait to read. I clean my house because it makes me feel better. I keep my home and my life as organized and simple as possible.
I shut off my phone when I don’t want to talk. I only check social media when I am in a good mood. I rarely watch the news and only read and watch things that make me feel happy. I listen to music and inspirational podcasts. I deliberately focus my thoughts on things that are good and wanted instead of things that are unwanted. I stopped caring what people think (but I still care what my dog thinks).
I let go of my past. I focus on where I am now and where I want to go. I forgive myself and others. I try to see the best in people. I advocate for what I want and what I need. I allow myself to fall in love with life again by not doing anything I don’t want to do. If I have to do something, I find ways to enjoy it.
Self-care is usually a forgotten topic, some think that being on treatment is all the self-care they need to address their cancer; However, we all know there’s so much more to managing an unmanageable body. It’s all about being present mentally and physically, as they say, your entire house needs to be in order.
Being physically active is my go-to in self-care. When you are on many of these drugs that have steroid components, usually the body takes a licking with unwanted weight. Though exercise is a go-to for weight loss, using exercise can be so much more depending on which way you want to go about it. I use exercise by breaking it up in regard to what I want to do. I’ll use dance when I want to feel extra happy; it’s also a great go-to towards the end of the week, at the tail-end of treatment. I use weight training to improve my muscle mass loss, carefully lifting and moving helps me get a full range of motion that helps with any stiffness I acquire.
Another go-to for me is laughter, I’m all for a good joke or being silly every now and again. I’m known to say I need to watch something funny based on a week that may have been rough. Laughter has its way of lessening the tension, as blood cancer can be quite tense.
How do you make time for self-care?
The first thing I do when I wake up is breathing exercises and meditation. It’s also the last thing I do before I go to bed. I don’t work due to my side effects, so my whole day is essentially devoted to self-care. I still have responsibilities since I have a son, a dog, and a home, but I will always make time for splurging on self-care. I spent too much of my life putting others’ needs far above my own.
Self-care is 24/7. I find ways to practice self-care no matter what I’m doing. I get exercise when I am walking the dog, cleaning the house, or shoveling snow. I call a friend as I clean the kitchen or drive to pick up groceries. If I’m in the cancer clinic, I focus on the appreciation that I have a cancer center so close to home and a team of people who want me to succeed. If I’m feeling fatigued or unwell, I appreciate the opportunity to rest and relax and look for the thing I can do that makes me feel the best. Sometimes it’s reading a book or watching a show, often it is sleep.
I love to laugh, and there is always time to find something to laugh about. I try to find something good in everything and keep a sense of humor. I laugh with the nurses and doctors, even when in the emergency room.
Self-care is such a huge deal when dealing with any life-altering situation. I think we tend to miss this step when making the decisions between various treatment options. Once you’re involved in all that goes into that important process of getting your health back on track, some areas may get lost in the high speed of care. We worry so much about this medicine versus that and the side effects that come with them; we forget that somewhere in those experiences should be some form of self-care. Fatigue unfortunately is part of the trials when dealing with this new routine, but self-care is key in a better and healthier you.
My schedule can be tight, with so many things happening all at once, but reading signals from my body when I need to just stop moving and sleep more. Usually, part of chemo is making room for chemo fatigue, and most follow what their body is instructing. I find going back to the earlier mantra of getting to bed at a certain time and getting a full 7-8 hours’ sleep, can do miracles in how your day goes forth. I find a difference between the drugs putting you in a place of rest, versus you following a routine in making your body do what you want it to do, change the narrative to your full benefit. I also train my mind and body in relaxation for 3-4 hours rather than automatically linking up to my computer all day, and if I can’t do this consistently throughout the weekday, I try to maintain this thought during the weekend.
Where in your life do you need to slow down and take your time?
Pre-diagnosis, I was a bonafide type-A control freak who was quite unhappy with life. Having blood cancer has cured me of that. I am on the path of learning how to relinquish that personal control and give it up to the Universe/God -- to do less and allow more. It hasn’t been easy. I’ve had moments of extreme frustration, anxiety, and depression after my stem cell transplant, hoping to get back to "normal" life and wondering why it wasn’t moving along faster. I’ve finally come to an acceptance that I am where I am, and I’m gonna make the best of it.
That said, I still find myself thinking about ‘shoulds’ at times. I should do the dishes, I should walk the dog, I should make supper for my son, I should be able to work. I should get out of bed, shower, write an article, plan supper … the list goes on forever. I want to slow down the fixation on projects and accomplishments and instead listen to my body. I want to follow inspiration more than motivation.
I also want to look less at how things are and focus more on how I want them to be. I want to keep dreaming of better health, a loving relationship, and financial security instead of putting my attention on the lack of them. I want to feel as if I already had all the things I want since I believe that’s the true path to manifesting them.
I’m now in complete remission, though that doesn’t mean I’m back to my normal practices. If not just one thing having multiple myeloma has shown me is that normalcy as I knew it will never return; I say perhaps that is a good thing as it was filled with stress. Though I tend to carry a lot of projects it’s very important to write down everything I have on my plate. I look at what is happening and make a recovery plan when I know there’s too much physically going on. One such time is when I’m preparing my meals, as it’s quite easy for me to stand 3-4 hours straight focusing on a weekend or Sunday meal, and add that with cleaning a house, at the same time. I write everything down in a particular order, but I’ve also learned that the way I use to move may have been quick, but did it make sense?
We have a tradition of cleaning the house from top to bottom on New Year’s Eve, so you can imagine the stress of coming home from work to start into this routine, and the kicker was to do all of this prior to 12:00 am New Year’s Day chiming in. I would also keep this pace all during treatment, as it would take me a day to recover back to myself in a day. It made me feel like I could still do it all; I’ve learned that a lot of the stress we tend to place on ourselves; there’s always room to amend traditions and routines, as those chores or projects it’s not written in stone. I’m not as spry I’m extra mindful of avoiding situations that I may pay for later.
Have you met another blood cancer patient?