Invisible Disability Week

October 2015

One week a year, it’s our week. 

The following is from my perspective, someone with an invisible disability, and what I do to try to survive.

Invisible Disabilities are exhausting.

If someone can’t see something, then it isn’t real.  

I hear the following comments directly, and indirectly?

•   Why can’t you just sit in a regular folding chair
•   Why the grimace or crying for no apparent reason
•   Why are you avoiding stairs at every opportunity
•   Why aren’t you showing up for certain functions    anymore
•   Why is your circle of friends changing
•   Why are you acting like a spoiled diva 

I have tried to hide my Arthritis/Blood Clots/Thyroid issues for years from everyone, but now it is too tiring to hide it any longer.  I have good and bad days.  The bad days I try to stay away from everyone, trying to explain takes forever.  Even to the point of someone saying just take a pill, or I didn’t really want to know.

Why do you have to be such a diva, I just saw you walk a mile, and now you say you can’t walk up a flight of stairs?   

Lucky for me I have asked for help, and possible solutions to be able to keep going whether at home, driving, or outside activities.

If you are staying with friends, or family, make them aware of what you might need, or special things you are bringing. If there is a chance of a negative response,  I opt for a hotel.  

Suggestions to make for you to enjoy life a little more:

Your bed should be high, and you feet should not touch the floor, this way you won’t put extra stress on your knees getting in, and out of it. Novaform Gel Memory Foam Mattress Topper will do wonders to improving your comfort.  They also make pillows.  Available at any Costco. www.costco.ca or www.costco.com 

Your toilet should be high, you can get the insert at any home medical store.  

My bathroom floor is a one piece of dense cushioned flooring.  If I fall, it won't be like falling on concrete.  The floor installer said that this will last forever, and will certainly help in a fall, and it did!

It is great now that Bistro Dinning Room tables are all the rage, with the high chairs to match.  So easy to sit down, and get up from.

Your favorite living room chair, why not watch for the 1/2 price sales on the electric chair (in Canada called an Acorn Chair) that goes up and down, and stands you up.  Awesome.

I traded my office chair for a drafting chair, great support, arms, and it keeps me high, so no knee pain when getting off it.  

Outdoor furniture, go for the Director’s Chair XL, it comes with a side table, and have had many friends who love mine, and have bought their own.  Cabela’s sells an excellent one for under $50.00.  www.cabelas.com 

Camping equipment, initially I thought my days of camping were over, when a friend suggested that I think outside the box on what I need.  I went way outside the box, when he suggested I look at what hunters use in the woods.  There it was a camping cot which was high, I sat on one, again my feet did not touch the ground.  With a 1 inch thick mattress, and sleeping bag, I was set.  Under the cot is where the luggage, and any extra items not being used.  The cot is at Cabela’s for $100.00, comes with it’s own shoulder bag to put it in when collapsed. www.cabelas.com 

Kayaking, I tried several types, and got tired of being turned upside down to get me out, then crawl to somewhere to stand up.  

Eric Moledyk, Programs Administrator, Sam Sullivan Disability Foundation, put me in touch with Jericho Sailing Club, which has a disability kayaking group. 
I have been there twice kayaking in Spanish Banks area among the tankers, boaters, and everyone else, what a great time I had.  I can't say how much these people helped in getting me out on the water, and learning the ropes.  I encourage you all to donate, or contact them about sailing, kayaking, or whatever, you will not be disappointed. Disabled Sailing Association of British Columbia, eric@disabilityfoundation.org

The owner of the Portland Kayaking Company said to me, I should be using a “sit on top” kayak only, and would have no problems.  He was right.  I have kayaked in Monterey, California, Portland, Oregon, Semiahmoo Bay, and Spanish Banks with no problems.  As a side note remember Stand Up Paddling (SUP) you can use sitting on the top and paddle to your heart's content!
http://www.portlandkayakcompany.com

Yoga, going cheap on your equipment, will turn you off to what you are wanting to do.  A mat should be thicker, a recommendation would be one from Lululemon, $100.00.  Bolster, try several out for what’s best for you.  Blocks should be of good quality cork, Halfmoon Yoga makes wonderful ones.  The blocks have to lift me up to a standing position, so I paid the 2 for $50.00, and worth every penny. www.shophalfmoon.com   www.lululemon.com 

School or Lectures, how do you handle those low seats?  Shear agony, to try to stand up. I take my high chair and stepping stool with me.  This lets me enjoy the experience.  Going to UBC in July, and have confirmed that my high chair is more than welcome.

Friends and Family

When I arrive at a friend’s home in Seattle for the weekend, the first thing my host does is come to the car, get my high chair and stool.  He takes it, sets it up in the best location for me, then puts a lovely nesting table beside it for me.  He, and his wife want me to feel right at home, and not out of place in any way.

When I visit my family out of town, they expect me to bring everything that will make the stay easier for me.  I forgot my high chair one day, my sister had a great idea, bringing out her 75cm exercise ball, which I could sit on with ease, and bounce to stand up with no pain.

Stay and visit with positive people, who are willing to adapt to you coming to visit or stay.  If they can’t or won’t there’s always a hotel down the street.  

I have friends who have MS, and when we are going to meet.  I look for places with parking at the door, no stairs, bistro seating, good food, pet friendly. This way everyone invited knows that the place we are going we can all go to, and enjoy.

Further information:

Invisible Disabilities Association Community - www.inspire.com

Kayaking 

http://www.canoecopia.com/

http://www.creatingability.com/

http://www.bcadaptive.com/  

these terrific people will introduce you to skiing!

hugs always

karen and charlie