Chronic Illness: What Have You Done for Yourself?
Last updated: March 2023
I am tired frequently, meandering through the days, dragging my impaired body from room to room, the fatigue so overwhelming. Forget exercise and nutrition to any meaningful capacity. The pain is at times extremely debilitating, making me grumpy, sullen, and full of despair.
The rainbow of emotions attached to chronic illness is such a heavy burden to bear. To be brutally honest I haven't been living the life I've anticipated for myself for over a decade now. Dreams have been trampled on and ripped away from me. I isolate myself and have become numb to the fact that I won't ever be where I thought I really would be when I hit my 50s. And that's hard to digest.
Where I am in life
I have been seeing a mental health counselor for the past 6 months working on acceptance with a bit of self-love and gratitude - focusing on what I can do where I am in life, in the here and now. With this, I wish for a better state of being. I would like to become less bitter, more loving, and physically healthier, with a whole lot less despair, agony, anxiety, and guilt.
She is teaching me that although I have moments of regression regarding not only my poor health but relationships in general, I am able to pick myself up and continue to move ahead by taking care of myself first. It hasn’t been easy - but it's necessary if I want to keep family close, personal relationships growing, my mind clear, and my ailing body moving.
Tango of the wills
Every visit my counselor asks, "What have you done for yourself the past week?" It's tough at times to come up with suggestions. Most days are difficult living with a chronic arthritic disease. I know I should say something - even if it's just, "I got myself in the shower today” or “I made myself a nutritious breakfast."
As basic as it seems, these tasks are pretty darn laborious, especially when every inch of you wants to curl up in bed and forgo not only a shower or meal but the day as well. She sees me struggling and will do anything to get me moving more, so she pushes and pulls at my insecurities and inabilities. It’s a strange "tango" of the wills, a tug-o-war between my counselor and me, but I eventually break and offer up some generic activity I've performed - and from there she asks me to make it a self-care ritual.
I've come up with a few self-care rituals as I manage my spondyloarthritis (SpA). Some I am more devoted to as they are something I favor doing and find they remain a prolonged activity. Then there are the chosen endeavors I’d like to make habits, but we'll have to see if they last due to my low energy level at times.
Some fall to the wayside and are barely approachable as they become too challenging or barely spark an interest. I do also go through periods of like and dislike of habits and tendencies as I discover what I can handle with my chronic illness and disability from day to day. But eventually, I've come up with a few activities that have developed into new habits over these few months.
Weekly, I log on to the Isolation Journals, a subscribed blog with a featured short story, poem, or project prompting writing ideas; its focus is on "Transforming life's interruptions into creative grist."(1) Some weeks there are anecdotes of hope, some with glory and honor, some sad and full of desperation and anguish, and some with affliction and heartbreak.
These tales all prompt me to think about where I am, what I've been through, and how I handle my life the best way possible as I tackle SpA. It opens my eyes to different views and new aspects guiding me through the pain and into a better place. For me, it’s an integral creative outlet - I find it a safe place, a place of solitude and strength, one that gets me out of my funk, and I've faithfully journaled for the past 4-6 weeks.
Experimenting with therapeutic practices to assist in relaxing and rejuvenating my sore body is crucial. The past year, I've been fortunate to have massages; a gift that has been delightful and restorative. This year again I have committed to saving money out of pocket each month for getting a massage every 2-3 months just to keep my body loose and flexible, a habit well-intentioned, with money put to good use.
I also find other ways to pamper myself. This past weekend I convinced my husband to go get a pedicure for the first time with me. Spending quality time together relaxing and visiting together strengthens our relationship.
Likewise, I stream some brown and white/green sounds to ease any anxiety that seems to tag along with my chronic illness and to help ease me to sleep when the pain is too much at night. I also do my own facials, spas, and nails at home, as well as use a massage mat and/or gun when feeling stiff; all terrific ways to coddle myself and save money to boot.
My counselor has made it clear she wants me to become physically active. I’ve been much better on my biologic medication as of late, so this year I am willing to get some exercise. This will ease my pain, strengthen my body, and get me moving and grooving into bigger and better pursuits.
To begin, I'm devoting time to walking our dogs early mornings for 20-30 minutes daily to get my steps in. Also, my stationary bike which has been attracting a fair amount of dust was pulled out of the closet, and so far, I ride 15-20 minutes daily. I also unrolled my yoga mat from the corner, took a free Yoga for AS class, and engage in meditation and yoga practice on YouTube to ease up my daily tension.
I’ve also joined a gym. I wanted access to a pool and sauna, and a safe place to exercise where I'd get actual results. Being at home most of the time has afforded me to be lackadaisical where I forego the necessary movement and therapies. Here I can walk, run, bike swim, and go to classes such as yoga and meditation. Although this will be a new experience for me, I hope it doesn’t backfire and I go less and less each week.
4. Art therapy
Since a child I've danced; my go-to art therapy throughout my youth. But because of this disease's disabling manner, I've had dance ripped away from me. Therefore, it has been suggested that I take some art classes. I thoroughly enjoy any form of "art" and have delved deeply into the therapeutic practice. I've gone weekly to an art therapy class through my counseling center at Art Awakenings.
I’ve also set up an art room at home where I experience and experiment with different mediums. I love pour-painting with cells, acrylic painting and drawing, macrame, and making wreaths. My hope is to get into learning stained glass and pottery techniques. Just being in the art room has eased the loss of my career and beloved art form. Art puts my mind, heart, and hands together to be once again – creative.
Something for myself
You ask as I have asked myself: "What have these rituals done for you?" Valid question. As I grind along daily digging deep into the rainbow of emotions – the grief, fear, grumpiness, guilt, despair, ableism, isolation, disassociation, numbness, anxiety, helplessness, anger, self-loathing, bitterness, jealousy, and self-doubt - these commitments to self-care help me stay attached to reality and live a meaningful and enriched life.
I may not be where I thought I should be but I'm still here and I cannot waste away loathing my life in bed, drowning in self-pity because I am chronically ill. I've got to make the best of a difficult situation. So, I go with what my counselor is suggesting and do something for myself.
What self-care rituals have you begun?
Has changing your diet helped manage your pain and flares?