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The MS Illusion

                                                                                           



I began working with a new PT last week and am happy to be back in the hands of a professional. Time will tell if he is as good as Rebecca, but she's a tough cookie to follow. (Oh, hey, Rebecca, he's going to do dry needling hooked up to the Tens machine. Thoughts?)

Of course, all of America is packing on the freshman fifteen lately, so this reintroduction to physical movement will serve double duty; especially since new PT has prescribed doing his exercises twice a day. Every day.

I spent the weekend at our camp where fellow camping pals commented on how well I'm doing with my disease. These folks have known me for years but don't really know me. If they did, my fake bravado would be more than obvious.

The reason I seem to be doing well is due to a tremendous amount of hard work; thus, the MS Illusion.

If I don't stretch  (back, hamstrings, arms) before getting out of bed every morning I most likely won't get out of bed. MS has robbed me of the ability to swing my legs over the bedside without some manual help.

MS has put me in a very uncomfortable position of owning up to my reality. I wear my AFO all the time in public. I am grateful for the device, but no one realizes the inconvenience of using it. I always travel with a spare pair of underwear in case of accidents, but how many people are forced to travel with an alternative wardrobe?

THE POINT: My niece and I drove the one hour and 45 minutes to camp Friday morning with only one bathroom break. Twenty minutes later we were at the end of the mountain road and glad to be at what we call the center of the universe. One feels the tensions of daily life automatically dissolve into the air. It's literally paradise.

I went to the bathroom as soon as we entered our camping trailer and felt confident that I was good for another hour. Hee hee hee! Guffaw! 

Since my husband had already arrived and readied the camp, I decided to walk around the camp and see some people I hadn't seen since last year. I wasn't gone long nor did I exert much energy. No bouncing up and down (If only I could.). No running after any of my small-person friends. (Another laughable thought. Run? Seriously?)

Suddenly I felt a distinct warning. I had to pee. Now. (Of course, that means it's probably too late.)  So, I abruptly say my goodbyes and face the few (very few) steps back to the comfo4t of my own camper commode.

Step after carefully placed step I cautiously make my way around the corner of the trailer encouraging my bladder to hold on.

Clenching my internal organs desperately, a fleeting thought of success was interrupted by the sensation of a warm substance splashing down my legs, through one of several pairs of shorts I had packed for a two day get-away. I could deal with the wet behind, but now my shoes and socks were soaked, meaning that my AFO held a puddle of pee. Not a good way to start a much needed weekend of rest.

So...I quietly enter my weekend oasis and calmly search for a fresh pair of skivvies, clean shorts, and dry socks. With the AFO a long sock is needed to protect my right leg from chafing under the thick plastic. Well, guess what? My backpack is full of extra footies, but there are NO long socks to be found.

Decision time. Do I continue wearing my wet, pissy knee sock and wet shoes for the rest of the day? Do I shower and forget about the assistance of my pink leg? I'm the only one who knows of this discomfort. I can shower before going to bed tonight. 


And...that's what I do. I'll face the rest of my mini vaca without AFO assistance. That makes me nervous what with the uneven ground and obvious need to get to the bathroom ASAP. But I dealt with it with no one the wiser.

That may sound rather cavalier and brave, but it is just one more example of the MS Illusion. No, we are not okay. We are not fine. We live and will continue to live with the uncertainties of our disease. The MS Illusion is our reality, our normal.

When bladder issues interrupt our day, it isn't as easy as changing out of wet clothes. Try removing wet trousers with the AFO still attached. Not happening. 

Instructions:

1. Balance yourself to remove shoes, socks, and AFO.
2. Remove articles of footwear.
                        At this point, you have exhausted 10-25 minutes.
3. Continue balancing (probably on one leg) until soiled underpants and over pants are removed.
                          Another 10-15 minutes.
4. Wipe off legs and any other affected body parts.
                          Stop to feel sorry for yourself for a minute or two.
5. Don dry underpants and accompanying outerwear.
                           More minutes applied.
6. Disinfect AFO interior.
7. Acquire a dry pair of shoes.


                             You might read about my ongoing AFO/Shoe                               War. The only shoes I can wear with my AFO are canvas Converse All-Stars. I have several pairs. 





8. Place foot in cleaned AFO and begin the grueling task of fitting AFO into the shoe.
                                      May take several minutes depending upon 
                                the tightness of laces and dexterity of fingers.
9. Lace shoes and wipe your tears. No One witnessed any of this. No one has to know. It's all an illusion.

               
Read more about my MS realities:






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order directly from me by sending me your mailing address for a personalized copy and some MS bling.

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I hope you're all well and continuing to practice social distancing. Stay well. Take this time to learn something new. I'm learning how to shoot a handgun this evening! 

Take care,
Lisa, aka the Lady with the Cane, aka Annie Oakley



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