Hey MS, Hug This!

Some results, dancing, and a little bit of a book

 

Hope everyone is stuffed in a good way this day after Thanksgiving!

First up on today’s blog, I must apologize for misstating the chapter of MS Madness: A “Giggle More, Cry Less” Story of Multiple Sclerosis. I have been talking about the Hey MS, Hug This as chapter 19 in my upcoming book. It is actually chapter 20. Forgive me for this lie. It wasn’t intentional. It was MS’s fault.

As promised, I had planned to name the winner of my first contest. Unfortunately, there were no winners, and for that, I apologize as well. I thought it would be easy. The questions was, Hey MS, Hug This, is one of the more serious chapters in my book and it details one of the most frustrating aspects of multiple sclerosis. What is that aspect? Hint- it is not the MS Hug.

The most common answers were fatigue and bladder issues, and it is true, those are incredibly frustrating. But the answer I was going for was FRUSTRATION itself. To me, frustration just sums it all up.

A painful symptom is called a hug.

 

The so you don’t pee all night meds give you wicked dry mouth which makes you need to drink water constantly which makes you pee even more.

You can fight fatigue by taking better care of yourself but taking better care of yourself requires energy you don’t have because you are too fatigued.

And on and on the frustration goes with multiple sclerosis…

I’m sorry that there were not any winners but I thank you all for entering. I will announce my next contest on Friday, 12/6 and I promise that the prizes will be greater and I will offer more flexibility in the answer to guarantee a winner!

But also as promised, if you are still too stuffed to move and want a little reading, here is a preview of MS Madness: A “Giggle More, Cry Less” Story of Multiple Sclerosis.

 

From Chapter 20 Hey MS, Hug This!

…..What do things like boyfriends, memories, and balancing partying with being responsible have to do with MS? All of them were aging me much faster than I wanted to be aged. And that was completely frustrating! Maybe only a little frustrating as I was already a cognitive mess. But in these months following the diagnosis, all these things started to swirl together in my jumbled brain. It all made relieving, frustrating sense…….

……By my late thirties, I was so convinced I was turning into an old lady far too early that I began to state this fact to people. I had noticed Zack around town before we actually met and even though he claimed he caught me making googly eyes at him, I always denied it.

“I was NOT making googly eyes at you,” I would insist. “I just wanted to know who you were and what you were doing in my town, that’s all.”

After we actually met, he was more the pursuer. He was two years younger than me and I already felt like an old lady, so I balked at dating a younger man. When he asked how old I was I told him that I was eighty-seven. Luckily, he ignored my feeble joke and we started dating anyway.

 

My elderly weirdness increased. My bladder became more obnoxious and soon I stopped drinking beer. One beer and I would have to hang out near a bathroom for hours, at least.

The extreme fatigue came next. Zack and I could never watch an entire movie together. I was always asleep halfway through and would have to finish it the next morning with a cup of my grandma’s tea, sweetened just so. By that time, Zack’s normal brain had moved on to other things so rarely did we ever enjoy or discuss the movie together.

We kept trying though and even went with friends to see the second installment of the Pirates of the Caribbean franchise at a surround sound theater. Amid the bar fights, explosions, and general loud pirate activity, I was asleep.

(For the record, I did not fall asleep during the third and fourth versions as the anticipation of seeing Keith Richards on the big screen was enough to keep me alert.) ……..

 

….Later, of course, I realized all of those issues were not hypochondria but the early symptoms of my strange disease. The peeing constantly was from bladder issues associated with MS.

The fatigue stemmed from my body trying to fight its own immune system that was causing the illness.

The aches were from spasticity, which means that my muscles were going spastic.

The mood swings probably weren’t about MS, but let’s blame MS anyway.

The weird stomach ache was a symptom called an MS hug. A hug? That’s what my bizarre, painful, twisting, almost hospital-going, practically ruining the Portuguese Festival illness event was, a hug sent to me with care directly from the huge MS PAC-Man-looking antibodies in my body.

I thought my appendix was bursting, my friend thought I was pregnant, my cousin thought I needed to go to my grandmother’s and take one of her laxatives, his girlfriend thought I should consume weeds. But no, it was one of many hugs. Hey MS, hug this!…..

…..Even dear friends began to think nothing was wrong with me. Well, that was just fine, until one of the symptoms did come up. Then I was making excuses. If I felt unable to do something, they thought I wasn’t trying hard enough. When I tried to explain why it was tricky, then I was using MS as an excuse.

“You can’t blame MS for everything,” I was often told in regard to my exhaustion, clumsiness due to lack of balance, and my inability to focus on something. I laughed it off when it took me longer to get a joke, or when I had a hard time trying to figure out what was being said when words were spelled out instead of simply stated.

If one of my friends asked me in front of her young child, “Have you seen a-s-s-h-o-l-e lately?” I never got what she was saying on the first try. I had to piece it together in my MS brain.

 

We would be onto a whole different conversation before I figured out what a-s-s-h-o-l-e spelled and which a-s-s-h-o-l-e that friend was referring too. The irony of being an honors college graduate with a major in English who suddenly couldn’t spell a-s-s-h-o-l-e was not lost on me…..

…..Dr. M and I eventually decided I should go to a Vocational Rehabilitation Specialist. At the orientation they told me to think up my dream job and let them know when I met with the counselor what it was and they would help me find it. So I did.

I was writing a lot and thought maybe they knew of a paper where I could freelance and/or a company that needed somebody part time to write their newsletter. I could do that. The counselor told me starving writers were a dime a dozen, so I obviously needed to forget about them helping with that type of work.

What else did I want to do?

“Ummm, how about working in reception? I’m pretty friendly.”

She told me I didn’t need her help to get that job. Probably true, but I didn’t know how much I could make with my state insurance and needed her input on what people with relapsing- remitting MS do for work, when they have symptoms that come and go. In orientation, they had said they worked with people with MS all the time-they must know how people like me managed.

“Oh, you’ll have to figure those things out on your own.”

She was very nice but I was very confused and frustrated and not sure any more what I was doing there. After many calls and different answers and more hold time and confusion I did learn that if I got federal assistance and a part time job, I could not make more than forty dollars a month or I would lose my health insurance. But I wasn’t angry. Just frustrated.

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And now for our goodbye to season 17 of Dancing with the Stars– Jack Osbourne won! OK, officially, he didn’t take home the Mirror Ball Trophy, Amber Riley and Derek Hough did. And well deserved it was- they were fantastic!

But Jack went all the way, coming in third and dancing like he never thought he could! Who would have thought that without any experience at all, he would take his spirit and determination this far! And he happily brought all of us along the journey with him.

Way to go Jack! May you spend some time resting your achy feet and on to the next adventure!!!