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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HAVE SEX OR DO LAUNDRY?

bigstock-Blue-laundry-basket-isolated-o-48813821No brainer, right?  But for many women, it’s not as stupid a question as you’d think.

The 21st Century may see a socioeconomic shift in favor of women, e.g. more upper-level management positions, more business owners, greater control of wealth.

Success comes at a price; working harder for longer hours upsets the already teetering balance among personal, relationship, and family demands.  Another price?  Women are just as likely to experience heart disease as men.

For decades men have steadily increased the amount of time they put into housework and childcare.  Even so, the reality in most families where both partners work still reflects a scale that’s less than balanced.  And while the workforce is trending toward containing equal numbers of men and women, that increased role doesn’t usually reflect other, needed, social changes, like equal pay, daycare, maternity leave, or scheduling flexibility in attending to family needs (like staying home with a sick child).

Women as breadwinners are another phenomenon of the new century’s economic downturn.  That kind of role-shift between partners rocks a boat already sinking with the weight of household needs – who does what?  How long before hunting dust bunnies pales in comparison to hunting mastodons?

It’s a 24/7 job, no matter who does it and whether the family knows it or not, holding fast is everyone’s job.  While men may be able to put sex toward the top of the pyramid (at times even the tippy top), most women are still in the burial chamber, getting the mummy ready for bed.

Fact is, too many married women look to their partners to lighten the loads of laundry, not for sex.

In this context, how does a willingness to do some horizontal exercise together move up in your list of must-do’s?

  • Talk Together.  Remember how it was when your relationship began?  You two talked forever.  It worked then; why not now?  Remember that part of what makes your marriage exciting (and sometimes turbulent) are your differences.
  • Mourn.  Be brave; acknowledge that some hopes and dreams are no longer attainable or even reasonable.  Holding on can pull you both down.  Move forward by dreaming in a different color.
  • Say it Out Loud.   No one knows what you’re thinking unless you say it out loud.  You may have always expected your partner to be a mind reader, thinking “If they loved me…they’d know.”
  • Re-Prioritize.  And share the list with your partner.  Working toward workability takes two.  Are you tired of seeing his clothes on the floor?  Does he get crazy when your hair’s in the drain?  Negotiate a win-win; it’ll save you both time and aggravation.
  • Negotiate.  Working toward workability takes two.  Are you tired of seeing his clothes on the floor?  Does he get crazy when your hair’s in the drain?  Negotiate a win-win; it’ll save you both time and aggravation.  Be sure to follow through.
  • Delegate.  Neither of you is superhuman.  Trying to do it  alone hasn’t worked, has it?  Too many women excuse children from sharing in home tasks.  This often untapped resource can learn, starting as early as age 3,  responsibility, ownership and pride.  And you catch a break.Cluttering our days with unreasonable expectations and unspoken needs is so much less necessary to our happiness – and health – than being together.  So what’s stopping you?

Specializing in couples work, Kathe Skinner is a Colorado Marriage & Family Therapist and Relationship Specialist.  She works especially those couples where invisible disability is present.  She and husband, David, have lots of practice re-prioritizing retirement in interesting economic Find the schedule for the next Couple Communication Workshop at http://www.beingheardnow.com

© 2014 Being Heard

HOW CAN PARALYZED BE PRETTY?

Photograph of Rachel and her husband Chris on their wedding day.

Photograph of Rachel and her husband Chris on their wedding day. Photo credit: Martha Manning Photography

I blog for the government’s disability website, Disability.gov   If you haven’t visited, do so; it’s cool, comfy, and inspiring.  At a recent look-see, I plopped into a story about Rachelle Friedman, written by the person who knows her best — herself.

You might remember her story.  Last year, at Rachelle’s bachelorette party, a friend’s playful gesture resulted in a spinal cord injury when Rachelle was pushed into the swimming pool.

The wedding was as sweet as weddings always are; maybe even bittersweet. By necessity, the wedding was delayed until Rachelle was recovered enough physically.  Because of the weight she lost, Rachelle’s wedding dress fit differently.  And the couple’s first dance brought the guests to tears.

At her age, Rachelle has had to face, career-wise, what is usually faced much later in life.  Changing careers is generally a choice, but not for her.   As a Program Coordinator, Rachelle planned and taught classes like line dancing and aerobics to seniors.  She calls herself an “unreliable employee” now, one who can’t be counted on as a 9-5 employee because of low blood pressure and nerve pain.Re-focusing, this young woman looks to doing more speaking.

Unsure of a definite direction, this young woman wants to make a career out of public speaking, maybe relationship coaching (which is how we got acquainted.)  Not surprisingly, judging from her first career choice, Rachelle’s into helping others.   She still wants to be inspiring and educating to others.

What happened to Chris and Rachelle is one of those “out of time” things; being disabled young is like a long prison sentence — no choice but to serve it out.  Besides the emotional disruption, the financial cost been significant, too. Being disabled isn’t cheap, and earning potential all but disappears.

So much of this couple’s future can’t be imagined, and is one that certainly wasn’t planned.  While they don’t yet know it, this couple’s future will be different in another way, too:  the love and compassion they have for each other now will be small in comparison to what it will one day be.

Next time, I talk with Rachelle about  marriage, sex, and the fishbowl of being a disabled hero.

Visit Rachelle at www.facebook.com/rachelleandchris and on Twitter at @followrachelle.  Watch for her book next year!

Kathe Skinner is a Relationship Coach, Certified Relationship Expert and Marriage & Family Therapist in Colorado where she conducts k-cropped-4x6communication workshops for couples, pre-married’s, the invisibly disabled, and the over 50 crowd.  Kathe enjoys collaborating with other professionals in order to reach more relationships affected by hidden disability.  She sits on the Executive Board of the Invisible Disabilities Association, is a regular contributor to Disability.gov., and is an ardent-and-natural-teacher-without-a-classroom.  She has been diagnosed with multiple sclerosis for over 30 years.  More about Kathe at www.BeingHeardNow.com.