Another Beautiful Day!
To understand my story you'll need to understand the daily obstacle course a person with DM, Muscular Dystrophy, faces due to weak legs, poor grip function, light sensitivity, swelling and pain. Simple things that everybody takes for granted have turned into challenges that need to be conquered, modified or simply given up as losses.
THE THINGS I MISS:
Walks in the woods or at the beach. Swimming in the ocean or in a pool. Running up a flight of stairs. Going for a brisk walk. Going on trips or visiting friends without having to think about pain, accessibility of location and lighting. Wearing nice fitting pants versus the loose fitting pull up pants. Wearing shorts and tank tops. Wearing shoes with heels or sexy sandals. Regular gardening, raking, or simply pulling up a weed. Doing laundry, vacuum, cleaning and sweeping without pain or fatigue Walking while looking at the stars. Just simply moving about without having to think about how to do it safely.
So many simple things I can no longer do or have to work twice or three times as hard to be still doing them. My energy expense account gets way overdrawn on a daily basis, and I have had to learn to slow down, prioritize, pace myself. I need to listen and respect my body signals and yet not be trapped by feelings of guilt about them.
My first diagnosis was Lupus in March 2012. After a muscle biopsy at the University of Minnesota in July 2012 I was given a new diagnosis of DM/Myositis. At that time I was not aware that there are different forms of Myositis, each with their own distinctive features and approach to treatment. My diagnosis then was Lupus and DM/Myositis and I was given the usual approach of treatment with Prednisone. Methotrexate was added to that later. These are aggressive medications with ugly side effects when you take them longterm. After taking the high doses of steroids I got a really bad case Shingle, jumping 4 times.
I began having my first unexplained falls in 2011 walking up a hill from my car to the house, thinking I was just clumsy. I had trouble lifting my legs up on a footstool and lifting my arms were painful. I had bad rashes on my chest, arms and legs. I had puffy eyes and white cuticles.
LIVING WITH DM
When I am unable to sleep I use a reclining lift chair. I have grab bars for the bathtub. In 2015 when it was clear that I could no longer manage steps or stairs very well.
In the last six months it has become more apparent that my mobility has become more difficult. My legs feel like weights are attached and some days they just don’t want to move. By the end of the day I need to lay down in bed with my feet up to help relieve the pain.
I broke my right foot 3 weeks ago and have been using a boot to help with the healing. The doctor told me that the medication I'm on causes brittle bones so it doesn't take much to injury myself. The book is causing my back to hurt because of the uneven balance using it.
I can no longer walk through stores without the assistance of the grocery cart. I walk as much as I can as often as I can. I'm trying to stay as independent as long as possible and to keep the circulation in my legs. My legs and feet are turning purple. Some days walking is not an option due to swelling and extreme pain. A scooter looms in the future. What I lack in physical mobility I have to constantly make up with mental gymnastics, every move I make requires me to be mentally focused on.
When you have to fight your daily battles with DM (Dermatomyositis) there is no chance of a furlough, leave or truce. It is ongoing, relentless and progressive. It is truly mentally and physically exhausting. You absolutely depend on having a good support system through family and friends. They have to share this disease with you whether you like it or not. It is a learning process for them too and a harsh reality. I have learned that it is O.K. to have down times. I save clippings, quotes and relevant poetry to help during those downtimes when you have to try your best to control your thoughts and avoid anything that may have a negative influence.
Have a Blessed Day!