Posted 1/5/2017 8:26 AM (GMT -6)
I have advanced avascular necrosis of my hips and jaws. My hips are crumbling due to years of taking corticosteroids to manage auto-immune mixed connective tissue disorder. I knew the dangers of the corticosteroids, but had not other recourse.
I am also a former marathon runner. Running and walking has always been my personal oxygen. Running has always been my life's favorite passion. I am at one and at peace with myself when I am on a long run along a nature trail or remote roadway. The rhythm of my breathing and steps, like a metronome.
Running is now a distant memory. I remain able to walk, albeit limited distances. I depend on prescription pain medication to remain upright and walking. I time my doses depending on what I need to do in a given day. Even then, I am relegated to lying on my bed for about 2/3 of the waking day. My crumbling bones simply cannot tolerate weight-bearing. I am a petite person - 5 feet 2 inches tall, 85 pounds.
In my mind, I want to run. It causes me emotional distress to not be able to stand and walk at will.
Adapting and adjusting and coping to chronic pain, for me, is a daily work in progress. The work of co-existing in my body is an on-going process.
What helps/works for me:
1. Keeping my mind engaged and occupied. I am an avid reader. Reading allows my mind to travel to new places and to experience new people and to become wise on topics I might not naturally gravitate to. Browse a bookstore and pick up a new book. Find a mental escape.
2. Keeping my body physically active in new ways. I may not be able to run in a 10 kilometer fun, but I can still practice simple yoga and I can still work on strengthening my upper body using free weights and I can still walk short distances.
It is interesting to me to see how much I have been willing to re-negotiate life. "If I cannot run, can I at least be able to enjoy a 30 minute session of yoga?," I will query to God/Higher Power.
With all my might, I work to avoid becoming sedentary. If I must rest on my bed extensively during the waking hours, I make effort to get up every 30 minutes to walk the length of a hallway corridor in the condominium residence where I live.
3. Use of warm buckwheat packs. Oh, I love these warm packs. Place in the microwave and warm/heat. The buckwheat beads allow the pack to conform to the contours of the body area in distress, a gently penetrating heat. I use a buckwheat pack called "Sweet Dreams" that are hand-made by a local artist here in Portland, Ore. They are available on-line. My day begins and ends with heating of soothing buckwheat packs.
4. Keep a small group of friends or family for connection. Chronic pain is isolating. I have lost most of my friends because I can no longer keep up with their high-functioning lives. I have less-and-less in common with people who are otherwise healthy. My relationship with my mother has been strained by my chronic health and her exhausted due to worry and concern.
I remember to express gratitude to those friends and family who remain in my life. We all need human connection. It is as vital as food and water.
The one constant in my life is my little tea-cup Maltese, Molly. This little dog means the world to me. Her companionship and love is genuinely heartwarming. If you do not have a pet, I highly recommend considering one. The unconditional love of a cat or a dog (or a hamster or a snake), is genuinely life-affirming. Molly's companionship fills all the empty holes in my soul.
Use this forum, and its members, as a vital means of connection. You are among friends here and people who understand the true pain of chronic pain.
- Karen -