The following are the comments I gave to a support group about my book, The Marvelous Transformation: Living Well with Autoimmune Disease and how one can use the messages within it to deal with the mild, acute, hopelessness, sadness, and even depression that sometimes results from flares of chronic illnesses like myositis.
I’ve been feeling helpless lately as no medications have worked to control my Dermatomyositis, and even when taking those medications, I experience multiple side effects. In addition, I’ve had a rough few months of infections and complications.
After years of chronic, excruciating, hip pain I was diagnosed with a torn labrum and found out that I am not a candidate for the surgery due to my Dermatomyositis and Fibromyalgia. In January, I had the stomach virus (my family had it for 12 hours, I suffered three days). In February, I had Bronchitis that lasted three weeks. In April, I had a sinus infection with chest wheezing, that lasted three and a half weeks, even with antibiotics. As my disease flare, which started in 2015, has increased, my skin and muscles have continued to worsen with increasing pain in both and it often feels like my scalp is disintegrating. Meanwhile, I have electrical shocks shooting across the top of my head. In short, I’m miserable. On top of my current medical issues, in this political climate, I have been worrying about the state of health insurance and what the potential changes might mean for my friends who have chronic illness and me.
Disclaimer: The following should not be substituted for professional medical, psychiatric, or therapeutic advice. If your depression has progressed to the point where you need professional help, please do not replace my thoughts for that assistance. This is my experience based on years of spiritual study and psychological therapy. I have found therapy to be very helpful and still apply the practices I learned there today.
In The Marvelous Transformation, I talk about the coping mechanisms we all have inside us, and the actions we can take to seize control of our emotions. In the moments in which I realized I had started going down the rabbit hole of depression, I knew I had to take action to create my own reality of happiness. I spoke with a couple of friends I trust to point me in the right direction, and yes, I re-read a couple of passages of my own book.
I remembered that part of being happy involves maintaining my purpose. I can still show up in life in ways that matter, regardless of my physical state. I remembered that I have still been being available for my family – emotionally, spiritually, and in nourishing their bodies through healthy meals. You can do the same, you can examine your life for the ways you are still “showing up.” Are you calling friends and chatting about life? Do you like to draw? Do you like to write?
“Showing up” can even be more mundane, more about living life: Can you put on your shoes alone (Velcro or slip-ons count!)? Can you brush your teeth? Have you made adaptations to your house or habits to make your life easier? Do you find things to smile about every day?
I had a wake-up call a couple of weeks ago about just how badly I was slipping into the abyss of sadness. My twenty-four-year-old was worried about me and told me to “stop catastrophizing” everything. He reminded me to re-adopt my typical belief system:
- It doesn’t always have to be this way.
- There is always some change I can make to improve my mood.
- I haven’t exhausted all my medical options and I have a good medical team.
- Life is beautiful, I only have to open my eyes to see it.
Here are some of the messages from my book (with the examples I used in the past couple of weeks from my life) that I think are specifically pertinent to finding happiness when the sadness of illness threatens to close in on you:
A. Gratitude – For what can I be grateful, today?
- I get to watch my daughter ice skate, doing something she is passionate about, and I teach her, watching her learn and grow.
- My family, the love and devotion of my husband, the health, happiness, and compassion of my kids.My beautiful house, healthy food to eat, and good medical care.
B. I find ways to be useful, no matter how small.
- I got a little stain out of my nephew’s shirt on his way out the door to work, that he would have otherwise left there!
- I called the bank on an account issue, something my husband would have normally done because he handles the money, but I thought for once I would take something off his plate that I could actually do without physical strain.
C. I take care of my “whole” self
- I take lots (and lots) of naps.
- I get massages and float in sensory deprivation tanks to relax.
- I sit outside to enjoy nature (fully sun-protected of course).
- I listen to music and sing (much to my family’s “pleasure”!).
D. I look for the gifts of the current situation
- My friend jumped to bring me her walker when my hip was really bad, learning to receive generosity is a gift of my disease.
- Dermatomyositis led me to homeschool my daughter, one of the biggest pleasures of my life, I would never have considered this path if I was well.
E. I find community
- I can seek out support networks, both in the form of friends and support groups.
F. I ask for help
- Chris Cornell’s suicide and so many other recent ones have really made an impact on me for many reasons. It makes me sad when I am fighting so hard to stay alive to think that others feel so alone that they think dying is the only answer, especially when it appears that medication side effects may have played a role. I want to encourage you to seek help, from family, friends, and professionals if you ever feel that desolate and hopeless. There is always another way to improve your life. I’m here to remind you that you are wanted, you are loved, and your presence is very much needed on this planet. The National Suicide Prevention Hotline can be found at https://suicidepreventionlifeline.org/ or by calling 1-800-273-8255.
- I can ask friends and family for help.
- I can ask my doctors for help.
- I can ask my angels, my guides, and my God for help.
Sometimes, I just have to decide to elevate my mood, otherwise, I am lost. In some situations, if I catch it fast enough, I can make a choice by asking the question, “Do I want to be happy or sad today?” If I wake up and decide to be happy, it doesn’t change how achy or painful my body is. It doesn’t take away the rash. But it does help me to deal with it better. It allows me to focus on the positives of my life instead of dwelling on the negatives. I can decide to change my emotions in any moment by using the tools above. I hope these help you to do the same.
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