Saturday, January 25, 2014

"You Don't Look Sick!!" #MSsucks #invisiblehandicap

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    It's time to get real, life is not all rosy and fun, there are real issues at hand.
Prompting an issue at our co-op the other day when we arrived and all 4 handicapped spots were occupied. Now you might be thinking, So what, big deal! Well this is a big for a couple factors, 1. It was cold as all get out and snowy. 2. I had many things to carry into the building and one of the biggest issues at hand! 3 out of the 4 spots were wrongfully occupied. Only 1 had a permit to actually be parked there. When I wrote this status update on Facebook I was messaged by an acquaintance asking me why I was making such a big deal out of something like that and why do I have a handicapped placard to begin with.

PSA!!! One thing that irritates me ! People who park in handicapped parking spots who do not have a hanging permit or plate. 3 places today this happened. Most often than not if I,who has a permit can find a close enough spot do not even park in them so that when someone comes along who needs one and all other close spots are taken they will have a safe, close spot, let alone those that don't have a permit taking up a handicap spot, especially in this weather. (Stepping back down from my soapbox.)

 Now I am going to share with you why this is such a big deal, as some of you may have been thinking the very same thing but were not as bold as to come right out and call me out on it.

  When I was  30, in January of that year as a matter of fact, I was diagnosed with MS after battling months of illness and no answers and ending up in a wheelchair for a long time, and with therapy and medications fought MS and somewhat Won. I am not cured by any means, and it was one heck of an uphill battle. MS goes into remission sometimes which is kind of what happened to me. Many of my outward symptoms seem to go away, and in reality that is true to a point. What has really been going on is that I have learned to cope with many of the symptoms and hide them very well. Stress brings out symptoms and so does weather. Now for the most part Heat is my enemy, but this year we are experiencing a brutal Winter and my MS is not tolerating it very well.

   My muscles have become very spastic, and my pain level is at an all time high. I am having numbness and weakness and my dizziness is peaking. I may look ok but inside my body is waging a war against itself. My body is always fighting itself to stay upright. I cannot close my eyes for more than a blink while standing up or I will fall right over. I do not sleep well as I wake off and on all night due to numbness and tingling in all of my extremities and I am suffering from speech and motor difficulties as well as memory and diminished cognitive functioning and tiring faster than I have been in a long time.

   What does this all mean? Well for starters, At the beginning of an activity, we will use co-op for example, I may have quite a bit of energy, especially being in the early part of the day, but just by not being able to park in a close spot to the door, I expend a good chunk of that energy and add to that carrying in bags or items, even as simple as my purse, wears me down. Now add to that the cold, so now I am not only tired but now my pain level has peaked and my muscles are starting to spasm, that adds to me not feeling well. Fast forward 3 hours, teaching and helping out in classrooms and by the time I get done and ready to leave I am feeling like I can hardly make it to the door of the building, let alone a handicapped spot but now I remember my spot isn't right out front because I did not get one, instead I am parked many spots down the row and behind in the second row of spots. By the time I reach my spot I have to sit for many minutes just to gather the strength to drive home.

   Now you might be thinking, really how much can a parking spot really change my day. For my body depending on the time of day or amount of activity I have participated in, it is the equivalent to running a mile, as fast as you can without stopping to breathe.

   Now I am not complaining about teaching or going to co-op or going anywhere for that fact. I refuse to let MS beat me,and I truly enjoy these things and you will hardly ever find me staying at home feeling sorry for myself. Unless of course it is my coveted 1 day a week that I sometimes get but more often than not don't, my day to not get dressed and not go anywhere. Sound lazy?? Maybe to some but for me it is a recovery day. The week often catches up with me because I spend my days endlessly doing for my family and others because I love helping and doing, but sometimes I just need a me day so that I can recoup my energy and do it all again next week. Little things like utilizing a handicapped spot, or sporting a cane on a somewhat bad day or using my cool pink scooter helps me get those things done, so I can live life and ride in the fast lane and not sit back and watch life pass me by.  I do however have to pick and choose what I spend my energy on, so If I say no or bow out at the last minute please do not take offense, it just means life got the best of me this week and I have used up all of my energy, and it is time to recharge my batteries. What can you do to help you may  be asking? 

I ask you to please Just understand, be courteous and the next time you see someone park in a handicapped spot that you know does not belong there, think of me. Share my story in hopes of educating others to do the same, and lastly never, ever judge a person parking in a spot, by saying that they sure don't look like they need that spot, they must be using someone else's pass(although this does happen), they don't look sick, and the list goes on and on. Just remember that not all disabilities are apparent and just because some people look good walking into the store or building, you don't know the battle that wages within them and do not know how they will be when they leave that same building. Also you will save yourself a hefty ticket that I guarantee you cannot wiggle yourself out of with any kind of excuse. Last I heard these tickets are $250 and using someone else's pass is $500 and up to 30 days in Jail. Is it really worth it? If you needed one you would have one. So if you don't, you are taking advantage of a system that is there to help those that truly need it. 

   Teach your children and others about invisible disabilities, you never know when it might be you!!

1 thoughts shared:

Sarah said...

Hello dear friend. I can't tell you the looks I get when I'm out - my mom is handicapped, she still works, but she has had her car outfitted with hand controls but when she and I go out with my children she brings along her handicap hanger so that she can utilize the spots and we've encountered those that are legally to be there or who look at me (who isn't handicapped) or my mom who doesn't appear handicapped but that is the life with neuropathy and spinal issues :(