Tag Archives: national ms society

I USED to Walk the Line

Multiple Sclerosis NO balance issues

Because you’re mine, I walk the line     Johnny Cash

Don’t worry friends, this blog isn’t another lame MS parody of a common song. This blog IS about sorrow. And heartbreak. And the realization that sometimes the life skills you learned before MS are just shot with the onset of MS.

And by shot I don’t mean injections. I mean shot as in the slang use of the word. As in destroyed, demolished, gone away…

I mean shot as in alcohol. And not alcohol swabs. Alcohol like Jagermeister or Goldslager (“do I have any gold specs in my teeth?”) or Jack Daniel’s or some other type of alcohol.

 

Yikes, I am feeling nauseous and hung over just remembering those days.

What I am talking about is the fact that I totally failed when my neurologist had me walk a straight heel to toe line in his office. How could that possibly happen? I have been practicing that test as a precautionary matter since I was 16. I was the master of the heel to toe test!

My friends and I thought it was a crucial skill to acquire before we turned 21, lest we get stopped for drunk driving. We practiced sober. We practiced buzzed. We practiced drunk. We were heel to toe ninjas!

 

That was not necessarily a good skill to have or a skill to be proud of. I know that now. And I’m not advocating practicing to pass field sobriety tests. It is more important to do everything in your power NOT to drink and drive. That is the real skill to master.

Luckily, while my friends and I were practicing, we were too stupid to appreciate that we didn’t need that skill. Where we lived, you could walk everywhere. And if you were too drunk to walk, everybody knew everybody else and someone would pick you up off the sidewalk and bring you home.

One time I was definitely too drunk to walk home by myself. A more sober guy walked me home and was a perfect gentleman about it. Yet, for fear of my mom who had a reputation of being tough, he stopped at the bottom of my quiet street.

“Ok Yvonne, I can see your front door from here and there is no traffic. I’ll watch you walk into your house. You’ll be fine right?”

And he did watch. He watched me walk into our patio furniture and tumble right over it. The effects of a few Kamikaze shots, maybe?

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But never once did I find myself in a situation where I actually had to perform the test I was sure to ace; until this month at my neuro’s office. And the failure was a shock.

I didn’t take more than one step before I fell off the line. I tried again. Hands up in the air to steady myself and one and half steps later, off the line I went.

This, more than the constant bladder, the constantly being spacey, the constantly being cold, the constantly being hot, the constantly being too tired to even put on makeup, let alone go out with it on, reminded me that those foolishly fun days were over.

I did my best to adjust to this latest MS distress. So much for the years and years of practicing the heel to toe test. All those hours are just, well, shot.

 

Then I got very scared. What happens if I am innocently driving to my neurologist or church with no alcohol in me, aside from the alcohol ON me after doing my latest shot (shot as in injection here,) and I get stopped by the police? I now know I will fail the heel to toe test!

This concerned me so much that I looked up how the actual field sobriety test works.

Seems when they make you walk the line, the police are looking to see if you can do eight things: keep your balance at the start, follow directions, keep your balance during the test, actual touch heel to toe, keep from stepping off the line, keep from using your arms to balance yourself, turn correctly at the end of the test, and take the number of steps they tell you to.

If you fail more than two of the above, you are probably legally drunk. I would miss all of them! That would make me super, duper drunk in their eyes!

And when I would try to explain that I am not drunk, I have MS and cognitive issues, I would likely not be able to explain to it to them!

And I would be so nervous I would start slurring my words!

By that time, the bladder would be screaming and I would start dancing around!

If I get stopped for any reason, I am headed to jail for sure! And there is no way they will let me have shots of any kind in there…

As if multiple sclerosis wasn’t scary on its own, we now need to factor in the police. What’s an MS’er who has practiced and practiced and practiced the heel to toe test to do?

I’ve pondered this and pondered this, rested and pondered this some more. The only thing I came up with- get lots and lots of “I love the police” bumper stickers.

 

And right next to your driver’s license, carry your National MS Society membership card and your neurologist’s phone number just in case.

And most important, MS or no MS, don’t drink and drive!

Even if you can pass the heel to toe test.

 

 

Call Me Oscar

An MS transformation

 

I slept really well last night, despite the two nights of lousy sleep before last night’s night of good sleep.

I blame the two previous lousy nights of sleep on the incredibly obnoxious bladder issue that the meds don’t always help. That pisses me off.

(Get it- pisses me off?? I have used that one before and it is not my own but it is classic.)

Anyway, last night was a good night’s sleep so why did I wake up so crabby?

 

Well, first off, after my morning bathroom run I turned on my computer to discover that an email I expected and eagerly anticipated was not in my inbox. On top of that, for some reason, I couldn’t open my other emails, even after logging on and off a few times.

Things went downhill from there…

I turned into the biggest crabapple ever!

 

Aka, a Sourpuss.

Aka, Oscar the Grouch.

Email is a completely silly thing to get that upset over, especially since overall, things are well.

I had a doctor’s appointment yesterday that ran on time, went smoothly, and all my results were good- miraculous.

After a miserable summer, autumn is here and the weather is fine. (Don’t you dare nitpick- I am in no mood. For Cape Cod folks like me, autumn begins the day after Labor Day!)

I was settled in my new place

I was making decent progress on a project I was enjoying.

So what was with the lousy mood???

 

When I don’t know the answer to something, I blame MS. And in this case, there is some merit to that blame as it was the morning after my MS shot.

In addition to my email annoyance, other things that could be MS related went wrong.

My lack of concentration caused me to have trouble saying my morning prayers.

I spilled tea all over myself.

My clumsy fingers had trouble opening my cereal box.

My lack of coordination dropped some of my breakfast on the floor.

My MS meds hangover was starting to cause my head to ache.

So what was I to do? It occurred to me that I wouldn’t be very productive until I cleared my head some and I needed to be productive today. Since the weather was gorgeous, perhaps a walk on the beach would help.

It was at that minute that the sky darkened and scary looking storm clouds passed over my new home.

 

Then it started to rain. Not a light, pleasant, stomp in puddles rain. But a heavy, raging, life sucks with a vengeance downpour.

Oscar the Grouch was alive and well and had moved into my body and I was helpless to stop him.

I figured since I was now officially Oscar the Grouch I should do some research on him.

What I found was terrifying!

Oscar is not actually a monster, but a Grouch.

 

He was born in 1969- just like me.

He is rarely seen outside of his can. (Hmmm, when was the last time I left my can, I mean, my house?)

He complains, A LOT.

He likes to say things like “Scram” “Get Lost” “Go Away” and “Ding Dong- you’re wrong.”

And scariest of all, he used to be orange. And as most of you know, orange is the color of MS!

Oscar is actually MS and MS has actually taken over my body and turned me into Oscar.

 

Need more proof?

It has long been known that multiple sclerosis is associated with depression (what is more depressing than being told you have MS?) and also with major mood swings.

I looked into this further and learned that MS is also known to cause “frequent bouts of anger and irritability,” and “are likely to affect everyone in the family.” (Unless they run and hide.)

So what to do about it? My doctor already has me on mood drugs as I snap at her as soon as I get to her office.

 

Like Oscar, I was tempted to hunker down in my can and pull pillows over my head. But that seemed too unproductive even for the grouchy and unproductive me.

Plus, the remote control for my bedroom TV died.

So I wrote this blog instead.

Now, I will hide.

But not before first sticking my tongue out at the world and saying “Na, na, na na na!”

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Quotes on emotional changes with multiple sclerosis are from the National Multiple Sclerosis Society’s website.

Quotes from Oscar the Grouch are from Sesame Street and me.

Quote about being pissed off about bladder issues are from my sister Laurie.

“Na, na, na na na” quote is all mine.

Image courtesy of farconville/FreeDigitalPhotos.net

 

 

Invisible Idiocy

Multiple Sclerosis Assumptions

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Warning- this latest blog is less funny and possibly the most likely to get me sued, so far anyway.

My mom always taught her daughters that when you ASSUME something, you make an ASS out of U and ME. This is a lesson I have heard hundreds of times and should know well.

Yet, when I recently read a blog titled Understanding the Invisible Symptoms of MS, I ASSUMED this would be directed towards the people of the world who ASSUME there is nothing wrong with you when your chronic illness isn’t visible.

But instead, the blog talked about depression as an MS symptom and was directed towards helping caregivers and patients cope with and help those struggling with it. A well intentioned and important post it was of course. But I was disappointed that my assumption was wrong.

I thought, hoped actually, they would be taking about what I have taken to calling invisible idiocy and that it would be directed towards the general public. With more than two million people diagnosed with multiple sclerosis in the world, and an additional 200 people diagnosed weekly in the US alone, (according to the National MS Society’s website and verified by many other sites- they really should update these statistics; they haven’t changed since I was diagnosed three years ago), it seems to me that it is time for folks to get a clue.

And not just about MS, but also about the many invisible illnesses in this world: fibromyalgia, lupus, cancer, chronic fatigue, depression and several others. Shouldn’t there be a blog that shows regular people how to get off their high horse and learn a thing or two? How about starting with teaching them that they don’t know everything?

 

duhhh0001

Duhhhhh!

The problem is, that a person who happens to be one of the people who thinks they know everything, would “know” that I must be describing someone else. Bill Cosby once said “a word to the wise ain’t necessary, it’s the stupid ones that need the advice.”

The first piece of advice they need is that they just might be the stupid ones. These are the individuals who love to flash their “you must be faking, you look fine to me faces.”

MS’er’s you know who I mean.

The people who tell you that you are fine, nothing is easy, everybody has their troubles and then proceed to whine to you about the hangnail that is just driving them crazy or how long in line they had to stand at the pharmacy for their flu shot. Try standing in line when your legs are on fire for medication that is supposed to put the fire out, if you can afford it.

I prefer this group as at least they have some guts behind their assumptions and the courage (or nerve) to voice them out loud. Then, maybe, you might engage in a conversation that MIGHT help set them straight. Or not.

The group that is the worst is the smirkers. I could give you examples but this blog would turn into a book and I haven’t yet published my first book. But likely you know who I mean.

I would like to be brave and call out one of these smirkers for smirking but with my luck it will be the one time someone is smirking at me for something else- say wearing white after Labor Day. (Unlikely as I never wear white before Labor Day or after, white shows too many food stains).

“If you were just more careful or chewed your food more slowly, you wouldn’t have food stains.”

Yes, that’s it. I enjoy walking around with food stains on my clothes and hence why I keep repeatedly dropping food on me, even as I am the last one to finish lunch and those around me are chomping at the bit to get up.

Here is an interesting fact for people in the know. Just because I look fine doesn’t mean I feel great and am just faking. Frankly, if I was that good an actress I would be in LA.

It can go both ways. Just because you look lousy to me and your continued whining is driving me crazy, doesn’t mean you are basically healthy.

The point is, we can’t possibly know what is going on inside of others so what is with the judging and assumptions?

For example, it would be wrong of me to assume you are a creep. Again, I should not assume anything. But in order to deal I will just hope instead of you being a jerk you are just an idiot instead, an invisible idiot.

It is better to keep your mouth shut and appear stupid than to open it and remove all doubt,” said Mark Twain.

 

This will be how I deal, so that I don’t resort to Dr. Seuss for survival.

I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I’ve bought a big bat. I’m all ready you see. Now my troubles are going to have trouble with me.”

Mostly because a bat is a little too heavy for my healthy looking weak arms…..

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**The blog post, Understanding Invisible Symptoms can be found on the website, http://www.disabilityinfo.org/blog/?p=3085

***For actual statistics, go to http://www.nationalmssociety.org/index.aspx

****The quotes from the funny people above, can be found in the Laugh Lines section of this site. For more humorous looks at life from other great minds, check it out, http://yvonnedesousa.com/laugh-lines/

 

Image Credits-

Zazzle Inc.

My HS yearbook-yikes!

Image courtesy of [farconville] / FreeDigitalPhotos.net