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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THAT GIRL KEEPS FALLING ON HER BUTT

fall-down-stairs.jpgMy balance, isn’t.

So when I head straight toward the bushes at the entrance to my building it isn’t surprising.

Bushes are a trigger in picturing my first (and only) experience as a new MSer in an MS support group.   Recommended by my neurologist, the group experience was meant to help me cope with the way-past-due-diagnosis of my disease.

Instead, it freaked me out.

Walkers, wheelchairs, canes, crutches – and me, invisibly disabled, in high heels looking at a future unable to wear them.

Big time downer.

Especially when a guy lost his balance and landed on his butt in a bush. That he laughed it off was horrifying.

I understand, now, the reason he laughed.  Not only is laughing at the faux pas around the commonplace common, but situations that elicit that kind of response are also all too common.

The reality he must’ve experienced then is one I now share.  Today I laugh, too.  Because it’s truly comical at times and also because laughter is socially reassuring.  “It’s alright, folks.  I’m alright.  Nothing to see here, move along.”

Knock wood, I’ve yet to experience anything dire in my navigational mistakes.  Embarrassment to be impaired in public is what hurts. Most of us don’t know what to do in a situation like that.  I put lots of effort into looking unimpaired, but when I catch sight of myself in a shop mirror, the reality of how I walk, for example, isn’t normal at all. 

When I use an assistive device, a rollator in my case, parents scold their children for staring.  I’ve yet to hear mommy or daddy use the opportunity as a teaching moment to talk about disability; rather it’s “don’t stare” before hurrying away.  No wonder society hasn’t made much progress in accepting the disabled community who, except to children, remain largely invisible.

Recently, Disability.gov blogged an article about steps to take when being newly disabled.

It’s worth a read, especially if you’re not.

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.   For over 10 years, she and husband, David, have been Certified Instructors for Interpersonal Communication Programs .  Find the schedule for their next Couple Communication Workshop at http://www.beingheardnow.com© 2014 Being Heard

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 Come It’s “We’re Pregnant” But It’s Not “We’re Disabled”?

I don’t know when it became fashionable to identify pregnancy as an adventure à deux.  It always seemed lopsided that pregnancy excluded men from throwing up, having swollen ankles and shrewish moods.  I’m not even talking about all those forever changes like stretch marks, a bigger butt, and wider hips.  With the possibility of gestational diabetes, postpartum depression, or miscarriage, the adventure becomes a challenge, albeit one that affects the relationship although it is physically experienced only by the woman.

Not to make it one-sided, men’s experiences are extraordinary, too, and may include being the target of a woman’s whacky moods or being the late-night junk food scrounger.  For guys, it hits that the two of you are now a family, with all the attendant expectations to be the one who forevermore protects and provides.

Without a doubt there are many, many women for whom pregnancy is a delightful experience. The glowing, the growing, and giving life is an experience like no other.  Pregnant women and moms belong to an exclusive club that has unbend-able  membership rules.  So even if it was the two of you being pregnant, only one of you, in the strictest sense, is a mom.

It’s the same when a woman is disabled or chronically ill.  Only one of you is impaired even while both of you — your relationship — can be impaired.   Having an invisible disability can be the worst of all.

Our society looks for proof; needs to name it; needs to touch it or otherwise experience its reality.  You can’t be “a little bit pregnant”; you either are or you’re not.  Pee on a stick and you prove it.  With invisible disabilities, there’s no pee test.  For some people, taking it on faith is harder than believing that what isn’t seen is true.  For example, not being able to prove the existence of god doesn’t mean god doesn’t exist.  Obviously, it’s the emotion surrounding belief that counts; to disbelieve or doubt a person’s physical or emotional perceptions is tantamount to discrediting someone’s very existence.  The truth of it is immaterial, while the emotion surrounding such thoughts is what counts.  The thoughts may even be rooted in jealousy of a sort – “What, so you get a break but I don’t?”  “Buck up, you’re just being lazy.”  “I worked all day but I still have to make dinner and do the laundry and get the kids to bed before I can sit down and catch my breath and where are you? in bed.”

Quantification when invisible disability is present requires a different yardstick but most of all it requires belief, support, and compassion.

Adding a stress load to any system that is already compromised results in a predictable, and usually disastrous, outcome (think of how a building with cracks in the foundation responds to an earthquake).  The same thing happens when an already dysfunctional body system is unable to respond well when stressors are piled on.  Such stressors may include walking through a mall or having relationship difficulties.

“We’re pregnant” or “we’re disabled” is an implicit bonding between partners.  Life-changing events happen from which there is no return.  Legal sanctions apply in both situations:  the 20% of women, nationwide, who are disabled are entitled to lifetime support; children until they reach the age of majority.  Society doesn’t seem to have recognized that the “we” of marriage with children and the “we” of disability in a relationship are the same thing.

To say “we’re disabled” says that both partners are in it together, that there is emotional and physical support of the partner who is less capacitated. Pregnancy usually involves the active participation of both partners while acquiring disability isn’t chosen by either partner.  Parenthood never ends, just as disability does not; a major difference is in the expected trajectory – that parenting gets more pleasurable once the nest is empty, while disability often does the opposite.  Disability is different in that there is no consent, no pre-planning, and certainly no enjoyment in acquiring the condition.

Kathe Skinner is a Relationship Coach in private practice.   Specializing in relationships, especially those with invisible disability in the mix, she offers both in-person and web-based programs for couples.  See http://www.BeingHeardNow.com to find the right program for you!

©Kathe Skinner, 2012

“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

CAN I BORROW YOUR FINGER FOR A SEC?

 

Here’s a news flash:  stress can make you sick.

Maybe you haven’t gotten the message that stress can have a permanent effect on chronic illness.  Clouds your thinking, screws up your judgment.  Gives you the weepies and the angries.  Can take away your will to vacuum the house or cook a meal.  The effects of stress on the mood and memory components of your brain can get screwed up or even shut down.

Stress looks like lots of things:  a fight with your partner; anger or hurt at work; having to euthanize your pet (even making the decision); the temperature of your environment; hunger; lack of sleep, and more.

And our stress reactions aren’t just “in our heads”; they’re physical, too.  For example, my ability, literally, to stand or walk is impacted by the amount I exert myself in a hot environment.  Actually, I don’t even have to exert myself when I’m hot:  the very act of being is enough!

Worst of all are the cognitive impairments suffered from too much stress.  ”Chemo brain” is a good example.  While some doctors argue that chemotherapy cannot affect cognitive functioning, recent studies have shown that negative symptoms can begin as quickly as when a cancer diagnosis is received.   Seems the only thing that can do that is quite literally what we think when that diagnosis is received.  Cognitive behaviorists won’t argue that irrational thoughts are what need to be changed in order to change our feelings and ultimately our behavior.

Likewise, Adele Davidson talks about the relation of stress to “chemo brain”  (negative cognitive symptoms like loss of memory, confusion, slow or difficult processing, etc.)  in her book, Your Brain After Chemo.  I think many our of disabilities’ stress responses mimic chemo brain; certainly my multiple sclerosis does.

I’ve been talking about “distress”, or “bad stress”; however, we can’t go without “eustress”, or “good stress”.  Unless we stress our minds and bodies in appropriate ways (which differ for each of us) by doing things like walking around the block, carrying the wash down the stairs then folding and it putting way, reading, playing cards, debating an issue, problem solving, etc. we become mentally and physically flabby.  Ever see someone in a waiting room doing a crossword puzzle?  Same reason lots of adults work on jigsaw puzzles.

There’s a double benefit: not only is the mental exercise good for the brain, the pleasure and relaxation have a measurable chemical benefit as well.

It’s clear that sticking your finger in the dike doesn’t do much to hold back a significant quantity of stress.  In the flash flood of stress, we need to get to higher ground, take a deep breath and be glad we saved ourselves from drowning.

Kathe Skinner is a FABULOUS RELATIONSHIP coach who presents workshops, couples retreats, and teleseminars for couples who want to live happily ever after.   She is sometimes stressed by her husband, David, and their two hooligan cats, Petey and Lucy.