As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.
Through my work as a blogger and as a member of the chronic illness community, I am fortunate to meet unique, talented people who understand what life is like when living with chronic illness. I met Sarah Malm through my friend, Alison Hayes of thrivingwhiledisabled.com. They became connected through a shared interest in creating an online workspace for those living with chronic illnesses. The group they created called Spoonie Coworking Space meets every Monday and Friday for one hour. During that time, the participants share what they are working on for the next 45 minutes and at the end, we touch base on what was accomplished. It was here, that I first connected with Sarah and learned about her business.
As often happens, we connect outside of those types of groups and begin to form a friendship. Sarah and I connected due to her heartfelt cards that for me spoke to difficult events that were going on in the lives of those I love. Her cards and other items helped me to reach out with love in a concrete way at a time when I felt helpless to do anything of consequence.
Then, Sarah began to reach out to learn more about my experience with LDN, EMDR, and other ways of living more FULLY despite chronic pain. For me, that has been the main way that I have discovered treatment options for Fibromyalgia, Interstitial Cystitis, and Complex PTSD. Living in a small, rural town, if I hadn’t made these connections I have no idea where I would be today; certainly, I would be much worse off.
And so, it is with great pleasure that I share Sarah’s story with all of you, PFL readers and community. Together, we can realize our potential and live FULL lives that sustain and nourish us.
Hello Sarah. Tell the PFL Community a bit about yourself.
Hi, thanks for having me, Katie. My name is Sarah Malm. I live in St. Paul, Minnesota with my husband, Stephen, and our dog Baxter. We married a little over two years ago after deciding to move to a downtown apartment near a lovely park that often hosts live music. We looked forward to enjoying free concerts and using the park for walks with Baxter.
But then, the pandemic happened, so it has been a bit of a different experience than we had envisioned. Luckily, the space we live in is beautiful, since I spend nearly all my time there. I have set up a wonderful art space, which has been a big part of my life for several years and has even, in the last year, led to my business Sarah Malm Designs. Just recently, I left my part-time job at a church to focus solely on my business and my new endeavor SENDING YOU LOVE podcast which is coming soon.
- Grieving: Chronic Illness and Childless Not By Choice (Guest post written by Sarah)
- Advocacy In Action: Lobbying for the Fibromyalgia Community
- It’s Harder Alone; We Need Community to Thrive
What chronic pain issues do you live with?
A few years ago, I developed lower back pain that has progressively gotten worse. I was diagnosed with degenerative disc disease and given the label of Fibromyalgia. I have been trying to figure out the true cause of the pain ever since. I also have had hypothyroidism/Hashimoto’s for 20 years.
Tell us about your story? What do you think led to developing these issues?
My pain, strangely, started after an extreme chronic bout of bronchitis in 2017. I don’t know if there is a correlation or not. Currently, I am working with a naturopath after giving up on finding answers from traditional medical doctors. She started me on supplements. Then, for the past month, I have been taking LDN (Low-Dose Naltrexone), 3 mgs twice daily. It seems to take the edge of the pain somewhat, but I still suffer from quite a bit of pain at night. I’m still in the beginning process of finding if LDN will help me and from there what is the best dosage and schedule.
This week, I went began a new treatment at a holistic chiropractor (Secoya Health) that treats from the mind-body perspective. I had my first visit, which involved a thorough intake involving several different evaluation tools. It was quite amazing. I will get my treatment plan next week after they review the results of each of the tests.
What is your day like living with chronic pain? How does it impact you?
I would imagine I have been conditioned to live with the pain in some ways and just power through. But I have to admit, it is absolutely exhausting. I have trouble bending over, putting socks on, and dressing, or putting the harness on my small dog.
Though, trying to get comfortable sleeping at night is the worst. My worst days I am probably a 6-7 on the pain scale. At best, it can be a level 3. Sadly, because the pain affects my energy so much, I feel like I don’t have what I would like to give to my marriage, but we do okay.
The pain has affected my ability to work, either sitting or standing for any length of time is difficult. Two years ago, I worked full-time outside the home. More recently, I was working only 12 hours outside of the home, but as I mentioned, I just left that position.
Even still, I have been able to use my time to engage in my artwork and my own business which feels even more fulfilling. The finances part is difficult, though. My husband and I do have insurance, but it doesn’t cover my current treatment with the naturopath or the therapist, or even the LDN. But, I am willing to pay for it if it works. I’ve spent thousands on medical appointments and consultations that, in the end, did nothing for me. It gets pretty discouraging and hard to have hope for new treatments.
How is your treatment going?
Since this most recent treatment of Low Dose Naltrexone is fairly new, only time will tell how it will work.
The other thing that I started recently is Somatic Experiencing Therapy to address past trauma. (See her post: Grieving While Chronically Ill and Childless Not By Choice). As I have learned more about the mind-body connection, especially as it relates to pain, I started to research this type of therapy and found someone in my area who practices it.
I’ve had three sessions so far and they have been immensely powerful. I am addressing issues that I didn’t realize were affecting me, at least not to the great extent they are. My therapist says that it is a reasonable expectation that my pain could be resolved. So, I feel hopeful about it.
Would you feel like explaining more about Somatic Therapy? I’m very interested in learning more. It’s very in line with the Mind-Body Syndrome (MBS) therapy that I’ve been practicing.
Sure. Somatic Experiencing Therapy is new to me, and I have only had four sessions. But, we begin each session with me sitting back comfortably in the chair, closing my eyes, and the therapist leads me through a meditative survey of my body, beginning at the top of my head down to my toes, focusing on what I am feeling in my body. Literally, how does what I am feeling in my body translate to emotions I may also be feeling. Once we identify what that might be then we talk about what may be the source of that feeling and why. The emphasis is always to just feel it and not judge it in any way.
- EMDR Therapy: Rewiring the Fibro Brain
- A War Cry! Pain Warriors Tackles the Other Side of the Opioid Crisis
- No Stone Left Unturned
- Unlearning My Chronic Pain: Mind-Body Syndrome
- What is Somatic Therapy?
What do you do to manage your pain? Do you have any advice for others who live with chronic pain?
I use the heating pad when necessary. I also have a TENS unit that sometimes gives temporary relief. I take Tylenol regularly, which seems to help occasionally. Stretching and massage with a handball on some of the knots in my back helps sometimes. I would like to be able to meditate, but I find it difficult. Deep breathing and listening to calming music or singing bowls can help me relax.
So, for me, meditation is when you are fully focused in on the present and not doing a ton of thinking about the past or future. Do you feel that when you are doing your art work, that you are focused in on just creating? Do you find this to be helpful for managing your pain, depression, etc?
Absolutely, being creative takes me to a different space mentally and emotionally. I equate it to a kind of meditation therapy. It certainly doesn’t take away my pain, but it temporarily takes me away from my pain. When I don’t focus on my pain, then I am less likely to be depressed, too.
- Growth Mindset: A Teacher’s Approach to Healing Chronic Pain
- The Ideal Medical Configuration for Chronic Pain Treatment
- September is Chronic Pain Awareness Month
- The Benefits of Nordic Walking for Those Living with Fibro and Chronic Pain
How did you start your business?
I started creating cards 10 years ago when a friend introduced me to stamping and paper crafting. A few years later, after I divorced my husband, I started selling them on Etsy as a way to earn a little extra money. About four years ago, I decided to pursue it more fervently.
Then, in the past year, I began drawing and painting, creating my own original artwork and printing it onto art paper to create greeting cards and art prints. During the pandemic, I developed the mission with my card line: “Send the Love”. Out of that, I have decided to start a podcast which I’m calling “Sending You Love” as a way to connect with others, to offer wisdom and tools to help people learn to love themselves, and thereby love others.
How does your chronic illness affect your business?
I think my illness informs my business, but it doesn’t necessarily limit my business.
My chronic pain is, in many ways, the impetus for working for myself. I want and need the flexibility of creating my own work hours to be able to work around any flares of pain I might have. Also, the creativity of my business is a refuge for me, if not a distraction, from my pain.
Sitting down to draw or paint takes me to a different place in my head. If I am up and moving around trying to do chores around the house, I am focused on how my pain limits me from doing what I need and want to do. If I am drawing or painting, I am in my imagination and not focused on my body.
When you’re hurting or haven’t slept and you had planned to work, what do you do? Do you push through? Do you have strategies? Can you give yourself a break? How much pressure do you have with your business?
There have been times when I have pushed through the pain in order to accomplish goals I might have for my business. For example, the main pressure might be if I wake up and have a lot of pain, but I have orders that have come in that need to go out, I would work on those. I print most of my orders on demand, so I would need to print, package and ship them.
Other than that, most of the time, my work is flexible, whether it is working on my website, social media, or the actual drawing or painting. I probably should be more scheduled and rigid in how I attend to those things. I often wish I was more organized in planning and scheduling, but right now I am not. I work as my energy allows.
Give us more about the type of cards and artwork you do. To me, the special thing about your cards (besides the beautiful art) is that you address some heartfelt, real, and often tough moments in our lives. Tell us more about your thinking process as you come up with your art and products.
When I started creating my original art about a year ago, I really tapped into the wisdom and quotes that spoke to me and created art around that. Since I spent a lot of my life feeling alone (which makes sense now because I had essentially abandoned my true self), I feel like I want my art to reach people who may also be feeling alone or helpless.
I want to inspire, bring hope and love to others. Honestly, most people are only ever thinking of themselves. As an empath, I feel unique in that I am always “feeling the room” and aware of the energy others are giving off. I feel this innate responsibility to serve people who may be like me, “feeling all the feels”, and need some support, and that includes those who experience chronic illness.
My podcast, “Sending You Love”, is born out of my artistic journey and wanting to connect with people like myself on a deeper level.
As we grow and change, learning more about what makes us who we are and engaging in becoming our best selves, we will find that some people around us will fall or drift away. Why? Because they don’t understand the changes that we are going through. It’s the same when we have chronic illnesses. People don’t understand what we are going through, and it is easier to avoid us than really try to understand what we are going through.
Throughout my growth and change, as well as my chronic illness, I have been determined to not give up. I am determined to become my best self and to love myself first. If that means that people who don’t understand fall away, then fine. It’s hard when it happens, but I have also found other people on my journey who DO understand and have supported me.
Sometimes these supporters have been complete strangers, but we connect on a deep level because of a shared understanding whether it is about personal growth and/or chronic illness.
I want “Sending You Love” to be a place for people to find a voice and a community where they feel understood, heard, and loved, even if we are strangers. I feel driven by the universe to connect with people so that they know they are not alone. This is partly informed by my own personal theology that God/Source/Creator doesn’t intend for us to live alone or in pain. We are each created as unique individuals for a purpose, and we are LOVED, unconditionally. The goal is to see me, and for all of us to see ourselves through this same lens. I hope my podcast will help others connect with that in their own way.
Last, what advice or words for those reading this, would you like to give them?
My advice would be to find a balance that works for you. You can’t follow something that someone else does because you are unique and what works for someone else may not work for you.
One of the things I have learned recently through my somatic therapy is to honor the little girl that I sort of left behind because I felt, at the time, it was more important to take care of others and not disappoint others. I am learning to frequently check in with her now. Am I doing something because “I” want to do it, or because I think someone else wants me to do it, or because I am afraid of disappointing someone else.
I have spent much of my life living it for other people, and, in part, I think that is the emotional source of my pain. Please, don’t do as I did. Please, be true to yourself. Love yourself most. Honor what is true for you.
Connect With Sarah
- Sarah Malm Designs
- Spoonie Work Space 1pm Monday & 11am Friday, EST
- Sending You Love Podcast
- Sarah Malm Designs Facebook Page
Thank you for visiting my blog today. I am committing to posting once a week by Friday. However, as you know, my new normal means that sometimes I have to listen to my body, and I cannot follow through as planned. Thank you for your understanding.