INVISIBLE DISABILITY GOT YOU SIDELINED THIS WINTER?

Even if I walked away, I wouldn't be able to walk very far.

Even if I walked away, I wouldn’t be able to walk very far.

For those of us who are disabled, invisibly so, preparing for  weather that turns wintry follows a simple self-care rule:  stay inside.

As multiple sclerosis has progressed in me, simple tasks loom large.

Accumulation of simple tasks makes negotiating my environment literally hazardous to my health.

And I’m not alone in what can happen:

Impaired mobility.   “Give me something to hold onto, like a railing, or a walker,” I said confidently, “and I’m good to go.”  This from a woman who managed the unbelievable – falling down and taking the shopping cart with her.  Not just with her, on top of her.  The same woman who stepped off a sidewalk and fell face-first on her rollator into Chicago traffic.

Adding ice, snow or both increases  the danger, whether I want it to or not.  Cold temperatures stiffen already-Frankenstein-like limbs, reduce feeling, and can even shut down body functions altogether.  For me, any extreme of temperature, hot or cold, and I look and act like a zombie.

Impaired senses and abilities. When it’s cold, the body’s heat is centralized to protect the core.  Extremities function poorly, if at all.  Try counting change at the grocery store, or picking up something you dropped.  Even bending over is dicey and can result in a tumble.  Even worse?  Getting up again.

People with breathing difficulties may struggle, even with little or no exertion.  Arthritis sufferers are crippled all the more.  And the head-injured’s thought processes slow. way. down.

Anything already stressed responds negatively to even more stress.  Think of the knees of someone overweight:  when chubby becomes obese, knees already weakened break down when more weight is added.

Of course not everyone will have such a dramatic response to arctic-like conditions, but some will.   For me, balance and strength, ability to write, well-being and fatigue, mood, motor skills, bladder control, cognitive functions, like word finding, are some of what fall to unacceptable levels.

It’s just plain dangerous.   A wheelchair-bound client of mine was hit by a bus when the driver’s vision was impaired by a snowstorm – he didn’t see her crossing in front of the vehicle.  My massage therapist suffered brain damage when she hit the pavement after slipping on ice in the parking lot.

Our focus on independence may cost us, like the guy who refuses to leave when the flood waters rise.  Thinking about who picks up the pieces doesn’t cross our minds.

Can you afford to get stranded for hours?

Can your heart or lungs hold up to strenuous efforts to free your car from a snow bank?  What happens when your body’s attempts at staying warm mess with your blood sugar?  Or the stress of the whole ordeal brings on pain and diarrhea?

I have a highly polished ability to ignore what I don’t like.  I especially don’t like staying home on those arctic days when others are doing ordinary things, like going to work.  This is true even though experience tells me how I’ll hurt my body, mind, and self-esteem by ignoring how the m.s. in me behaves in harsh conditions.

Instead, control what you can.  Don’t know about you, but I already know what happens when I ignore what that is.

Kathe Skinner is a Marriage & Family Therapist and Relationship Coach working especially with the invisibly disabled.  She looks for real-life adventures in Front Range Colorado where the environment’s sometimes restricted by weather extremes. Currently, she’s cleaning up her home office while groovin’ to the oldies. A pirate’s treasure is stacked on the floor; who knows what she’ll find in all that paperwork?  Learn more about Kathe Skinner and the Couples Communication Workshops taught by Kathe & David at http://www.BeingHeardNow.com

©2014, Being Heard, LLC

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“If you have multiple sclerosis, you’re treated with respect.”

The following assertion was made by Maxine Cunningham, founder and director of Empowered Walking Enterprise/Ministries.  My response follows.
“Dignity is not a word that we often hear in connection with how we treat persons with a chronic mental illness – YES if you have cancer, ALS, multiple sclerosis, etc. Dignity and full personhood – that we might be whole.”

As a therapist with multiple sclerosis, and a Board member of the Invisible Disabilities Association, I can assure you that those with physical illnesses, esp hidden ones like cancer, ms, lupus, Crohn’s diseaes, fibromyalgia, anxiety, depression, etc., are not always treated with dignity.  There are still people who will not hug someone with cancer for fear of “catching it”.  An ms client was escorted from a grocery store after she fell into a display; the assumption was she was drunk, not that she fell because of balance problems.  Read about my own experiences with people’s assumptions, misperceptions, and misunderstandings on my blog, ilikebeingsickanddisabled.com. and in my article for the government’s site, disability.gov, http://usodep.blogs.govdelivery.com/2012/07/25/looks-can-be-deceiving/.   Mental health issues are as much a part of invisible disability as physical health issues are.  Parsing them dilutes the effectiveness of advocacy.  Without ignoring the special needs of any group under the umbrella of “disabiltiy”, it might, at some point, be worthwhile to give up the “me” in exchange for the “us”.

Kathe Skinner is a Relationship Coach specializing in coaching couples whose relationship is impacted by invisible disability.  She lives in the Front Range of Colorado with her husband of 26 years, David, and their 2 hooligan cats, Petey & Lucy.
© 2012, Kathe Skinner