Feb 202014

This is a reenactment of my position when the caregivers got to me.

This is a reenactment of my position when the caregivers got to me.

I am supposed to tilt my wheelchair every couple of hours to relieve the pressure where I sit. This past Saturday was a beautiful day (sorry those of you in the rest of the US and UK), so I chose to get horizontal out in the garden. Before I knew it I had dozed off and was awakened when my right arm slipped off the armrest. It was time to get out of the sun anyway so I attempted to raise my arm to the seat controls. I got within an inch or two and then my arm collapsed. So I tried again. No luck. “Well,” I thought, “I’ll rest a few minutes and try harder.”

Still couldn’t get my arm high enough to grab the armrest. By now both arms were becoming sore from dangling and I realized I would never build up enough strength. There are usually a few people wandering around in the garden, but not this day. Surely someone would come soon. After another 30 minutes I realized it was wishful thinking. Then I noticed I was having trouble breathing. My weak diaphragm makes it more difficult to breathe when I am horizontal.

So I tried to yell for help. Now you’re probably thinking (and you would be right), “How can someone with weak breathing muscles do a good job of yelling for help?”

I decided to pace myself and yell for help two or three times every few minutes. After another 15 minutes, I heard lots of excited voices and was soon surrounded by caregivers who restored me to the upright position. It turned out a resident had been enjoying the sun on our patio about 200 feet away, heard me calling, alerted the staff and I was saved!

I wish I could say, “All’s well that ends well,” but not really. Now I know I can’t venture far from the facility on my own if there is any chance I might, through force of habit, tilt my wheelchair.

I often say that inclusion body myositis forces me to rewrite my life’s script. Lately, it seems it’s trying to force me into coming up with an ending.

  9 Responses to “Tilting with Danger”

  1. Mike, No, No, not yet…As your book finds professional staff members and more of us with IBM, you will continue to be looked to for answers about this most unwanted IBM companion. I work slowly but I aim to get a copy to each physician who advises me. I well understand from my own experiences how demoralizing each step down can be. But each time we find something new and vital of interest and we “keep on keeping on.” Happy days, Mike, in Sunny California!
    Terry Dussault
    From the Great White North
    And looking for the white world to turn green!

  2. So glad you were rescued.

    My motorized wheelchair arrived the other day. One of the things I was looking forward too was exactly what you were doing. (that is when summer arrives in the UK!!). I am still learning to drive in a straight line with our uneven pavements. Best wishes to you from John..

  3. Oh Mike, what a scary experience. I am glad it had a good ending after all. Bless the person that alerted the staff for you.

    I feel for you, and hope you will not feel discouraged too long. I am rooting for you and I am not the only one.

  4. Thank you for the warning. My husband uses the tilt position to relieve his back and rest his neck muscles. Also thank you for your willingness in sharing. You have helped us along the way. God Bless you. Julie from Michigan

  5. Mike, I’m so sorry you had to go through all that. Isn’t there something you can use to call for help. My husband’s voice has gotten to where he’s hard to hear. I gave him a bell so I know he needs me when at home. I’m getting over a flare due to receiving Contrast for Cat scan my DM has caused me to become allergic to so much. I like you have to be his caretaker. I’ve always called you my Hero. You are such a unique person. God bless you Mike.

  6. Though the story may have a scary moment or two, I know many appreciate your ability to find lightness and even some humor in it. What a great tan you must have as well. :). Keep on keeping on.

  7. Thanks for all the nice comments. Even though there was an element of danger, I would consider this an amusing adventure, since I survived to write about. I am looking into a different cell phone as a partial solution. My iPhone five as voice recognition, but you first have to push about which, for me, may not be possible. The new Moto –X has voice recognition you can activate without touching the phone. Much as I have enjoyed Apple products over the years, their lack of touch free voice recognition may cause us to part ways.

  8. just reading your account of this incident got my heart rate up! so glad it came out well.

  9. Please keep on rolling, Mike! You are an inspiration every day.

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