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Relenting and Renting

Jun 07, 2012 - 8 comments

Never do I want to be constrained to a wheelchair.  Yes, I know, neither do you.  None of us do, but living with Multiple Sclerosis, it is a possibility that isn’t hard to imagine.  I took a trial run at it last week and came away with a renewed appreciation of being ambulatory.  It was vacation week, and I had agreed to go to Orlando and the Mouse World with our son and his family.  The thinking was being late in May, the weather would still be reasonable.  So much for our thinking – there was some flaw in the plan, because Mother Nature cranked up the thermostat and we had temperatures in the 90’s every day.

Heat sensitivity  is a fairly common problem for people with MS, and I am no exception; the warmer my core temperature becomes, the less cooperative are my legs.  Keep me in that  type of  stifling heat Florida was experiencing and I quickly resemble Quasimodo and his walking gait  - step, lean,  drag, shuffle.  Repeat.   The hotter I am, the scarier the MonSter in me looks.  

We planned on five days in the assorted parks and thought we had developed a reasonable game plan.  However we didn’t take into account the unusual early season crowds and did I happen to mention the heat?  The money was already spent for the tickets, the granddaughters were being cooperative and so excited to be in the Kingdom that I had no choice but to forge on.  The answer to getting through the finals days was something I had already thought of but had hoped to avoid –I relented and rented.  A mere $12 a day and anyone can rent a  wheelchair for getting around the parks.  There is even a multi-day discount so I put down my plastic and paid $20 for my own wheels for the final two days of our trip.

Except for an occasional push down a hallway at a hospital, I’ve not been confined to a wheelchair, and especially not in the midst of an excited, hot, sweaty crowd, all juggling for their own spot in line or place on the curb.  My adult children and husband traded off turns pushing, but my daughter did the yeoman’s share of the work and she got the workout with the stop and go, up and down aerobic nature of wheelchair pushing.  The height of the chair handles appear to be made for people who are less than 70 inches in stature.  My family is tall, and each one of them had to stoop slightly to push the handles.  

I’ve joked many times with my husband since my diagnosis with MS that I need to work out more so I can be prepared to haul my own a$s  around in a wheelchair, and I learned that is no longer a joke;  I could barely budge the wheels with my own arm strength. I’ve also talked about the need to lose weight, so it wouldn’t be such a chore for others to wheel me and this trip made the importance of that more evident than ever.   But mainly, just like I am sure everyone with MS desires, it was a good reminder that I want to be in control, and there is no way I can do that when someone else is doing the pushing.  It didn’t take me long to declare to my family that if there is ever a need for a full time chair, it will have to be an electric one that I can propel on my own.  I will make them take responsibility for that choice and blame it on the fact that they are horrible pushers and each one of them clipped more than one person in the heels as we made our way through the crowds despite my warnings that they were too close or too fast or too,  too,  too whatever.  This was from my family who regularly gripe about the seniors in the grocery story hitting into them with their food buggies.  

People who regularly use a wheelchair talk about the view from that height and I can tell you it isn’t pretty.  In a large, sun baked crowd, it is even worse.  I could see eye-to-eye with my 7 year old granddaughter, but the body parts I saw on most everyone else was something you would hope to avoid.  If the sun didn’t bake my eyes, some of the views certainly threatened to blind me. Goodness, do these people not know what they look like below the neck  and especially the belt line?

It was a humbling experience to set aside my pride, take a seat, and be dependent on others to get me through the 10 hour days of amusement. While the others went off to tackle the thrill rides, I sat in my wheelchair, entertaining my 18-month old granddaughter in her stroller and couldn’t help but feel a tad bit sorry for us both that we were left behind, even though I have never been one for dips and spins and turns in an amusement park. But we made the best of it - we had our laughs, danced a bit to the music, and made our own fun.   Like everything else with MS, perspective factors in a major way as to how to deal with the daily differences.  Being in a chair, albeit voluntarily and for a few short days, gave me  new perspective and renewed motivation to not relent to my MS.  

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Avatar universal
by Ufrustrated2, Jun 09, 2012
one of my civilian docs wrote an order up for me to get wheelchair training. it is humbling as you say. there are many reasons why i stay in at home so much and after walking a lot recently in an airport i know why i avoid going out much. it really really got to me, physically and mentally.

i suppose i need a chair to at least have with me. every year i get a little sicker here since i moved here. the heat and houseing and va stress hasn't helped.

79 degress in my house and my arms are still sticky to the table. drop the A/C a bit and it helps, but then the cost soars. life wiht MS has some reall challenges.

i'm glad you posted your thoughts. america below the waistline is a laughing joke to the rest of the world.

572651 tn?1531002957
by Lulu54, Jun 09, 2012
UF2, it is so good to hear your comments.  I know I'm not alone in this mixed feelings.  Drop me an email sometime and catch me up on the fun and games of LV and the VA.  

Avatar universal
by yorkieville, Jun 11, 2012
Lulu-I understand exactly how you feel. I'm having those days when just walking through the Mall feels like a struggle, and I fear the day is coming that I will be in a wheelchair.

This year, the heat is unbearable for me. We were in and out of the heat and A/C, and my migraines became blinding.

I missed a very close friends high school graduation yesterday because the temps here were in the 90's. I am heartsick about it, because he and I have had a close connection since just before he turned 15.

I will make it up to him, by attending his Open House on the 30th, but still.....I know it would hae meant a lot to him if I had been there yesterday.

I am fighting my MS as hard as possible....but have learned that MS plays by it's own set of rules.

Avatar universal
by Ufrustrated2, Jun 14, 2012
yes, i'll drop you a note about y situation. i have a sticky on my monitor to call shaddowsister and i keep forgetting.

more later

572651 tn?1531002957
by Lulu54, Jun 14, 2012
do give SS a call - it was her birthday this week, she is feeling a bit better from her radiation treatment for the thyroid and sounded pretty good when I chatted with her on Monday.

Drop me an email - you probably still have it but my home one is ***@****

198419 tn?1360245956
by sllowe, Jun 14, 2012
Nice descript of the world through different eyes, Lu. Thanks for writing up your experience all to see and feel.

On a lighter note, sounds to me that a lift-kit is in order for the tall!

439601 tn?1357864486
by Spuk, Sep 12, 2013
Speaking bout wheelchairs and M S thought I would tell y'all about mine.  My sister has absolutley no filter ever in discussions. The hard truth is ok sometimes but being that we had just lost our Mother on July 12, I was simply not in the mood. That kind of pain is unbearable, especially when it was not expected.

So, in going thru some things as moma's house my sister says- well Pam- you should be thrilled doing this, you  have 3 walkers and a new wheelchair-isn't that great?  HUH?  My brain full of grief and now it was about to go off on her inside our mothers house less than a month after her untimely death.  As they say in the south- I was about to open a can of good ole-fashion whoop a$s-right there and then!

How dare she "assume" ( i never have cared for that word since when broken down -says you make an a$s out of u and me), that just because I have M S I would need those items before her!  After all- she is 8 yrs older than me and at 63 1/2 it is more likely she would need them before me!  The audacity made me furious! I had to leave the house-it was too much too soon to fight with her.

Later she called asking me why I had left. again-HUH?  I tried to explain just because I have M S does not mean I am doomed to a wheelchair. Besides, it's ok for me to know it, but not ok for others to assume they know how my life will turn out for me.  Well being the one without a filter she just kind of said "Well-maybe it was too soon for us to clean up a little at moma's house-we can do it another time."  Sometimes I think if I looked inside her ears-I would see light at the other end!

That's my sister for ya.  No apology, nothing.  She is the one in the very beginning of 2008 when I was first diagnosed who said M S is the same thing as being Bi-Polar!  Argueing with her is like pulling teeth-or better yet-sitting in a tiny life-boat in the Bermuda Triangle and expecting to be home any minute.  

My only hope is that I have told my loving sister that her sudden trembles and forgetfulness and balance problems are sure fire symptoms of neurological disorders and convinced her to ask her doctor about it soon. She blames it on loosing moma, and being the youngest-and respecting my elders I agree and move on to the next soon to be arguement coming.

My point-altho obviously gone by now- is that nobody wants to be in a wheelchair. I battle with that subject thinking as long as I stay active I will be ok. But in fact, the odds against me with my sense of balance and occular problems rising yearly who knows. Maybe the big sister is in fact-always right-as she claims.

572651 tn?1531002957
by Lulu54, Sep 12, 2013
Spuk, thanks for sharing that perspective.  Have you ever told your sister you don't argue with her because she is your elder?  I can only imagine if she were told that. Besides, be sure to let her know you can only use one walker at a time and she is welcome to one of the others 'just in case.'  :-)

MS = BiPolar ... Wow! That's one I haven't heard before. I hope she has learned a thing of two in the past five years.

Seriously, you bring up so many good points - we just don't know what's next. Would we really want that crystal ball if we had to see everything that our future holds, the good and bad?  Thanks so much for sharing this story.  

My condolences to you and your family for the loss of your mother - I hope you have lots ofgood memories to help you through the tough times.  hugs, Laura

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