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Lazy Bones

An MS think tank

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My new favorite song is a perfect song by my favorite band recorded back in 1973.  Yet, I’d never paid much attention to it before.  How can that be?

The song is 100 Years Ago by, of course, the Rolling Stones.  It is basically a look at aging which is ironic because Mick and Keith were just babies when they wrote it.  But I can’t imagine it would be any better if they wrote it now.

It’s filled with perfect lyrics like “Don’t you think it’s wise sometimes not to grow up?”(Yes Mick, I do,) “Now if you see me drinking bad red wine,” (is that even possible?) and my favorite, “Call me lazy bones..”

It’s a fun song and even if you’re not a Stones fan, (is that also possible?) it’s worth a listen.  And since we all have to age, MS or no MS, it doesn’t have much to do with multiple sclerosis.

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But the lazy bones line has got me thinking.

For a long time I’ve pondered the difference between fatigue, (incredibly terribly miserable fatigue,) and laziness.

Now my MS friends are starting to freak out at the word laziness, and rightfully so.  When you live with an invisible illness you live with judgment.  People, and by people I mean colleagues, neighbors, acquaintances, family, friends, doctors, and strangers, tend to prefer to not believe what you say is going on with you.  It’s easier for them to dismiss your diagnosis and/or assume you’re just lazy.  And it sucks.

And have you ever noticed that even if you don’t talk about your symptoms, suddenly people like to tell you what’s going on with them health wise?  When did an MS diagnosis make me a toll free medical health line? These same people don’t want any input and certainly don’t want to hear what’s going on with me medically.  They just want to vent and write me and MS off even though I’m not the one venting!!!ID-100296977

So I’m not talking about those “people” who make the lazy assumption.  I’m talking about when I try to decide if I’m lazy.

This bothers me so much that I’ve started thinking about it.

Truly, I can spend hours lying on my sofa thinking about the difference between laziness and fatigue.  (Is that lazy?)

I used to be independent. I used to be able to go to my job, work ten plus hours, do errands afterwards, come home and eat a quick dinner and THEN maybe even do laundry or go to a meeting for a committee I was volunteering on.

I can’t even imagine that now.  Slowly all that energy disappeared and before I knew it some doctor I didn’t even know was telling me I had multiple sclerosis and I started injecting myself with crazy expensive drugs.

Who’d thunk it?

So those days of being active for over 16 hours a day are long gone. According to Mick and Keith, about 100 years ago gone.

But I don’t like being inactive and so I don’t like thinking I may be lazy.  But I often feel lazy and so I start thinking and then I get more confused and start thinking some more.

Here are some of my thoughts-

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If, when I wake in the morning my whole body aches and is screaming for rest and I don’t get up right away, or get up, pee and go right back to bed to rest a bit longer, is that lazy or is that MS fatigue?

If I’m moving so slowly that it takes me an hour to shower and get dressed when I used to HAVE to be able to do that in 20 minutes in the past, is that lazy or is that MS fatigue?

If even doing the simplest errand such as going to the pharmacy and picking up a prescription is so exhausting that it’s the biggest accomplishment of my day, is that lazy or is that MS fatigue?

If it’s easier for me to just grab a bowl of cereal for breakfast rather than taking the time to put together a healthy smoothie, is that lazy or is that MS fatigue?  (For the record, I have started drinking healthy smoothies and while I know they are good for me, they haven’t helped with energy.  Perhaps I need to drink more than just three in a month?)ID-100348548

If it’s a cold, rainy Sunday and all I want to do is curl up under a super soft blankie with a good movie, is that lazy or is that MS fatigue?

If I happen to go say a few days or a few weeks or a few months without exercising even though everyone says that exercise is good for me, is that lazy or is that MS fatigue?

If someone asks me what I want to do or what my preference is on something and my brain is just too tired to decide and so I leave it up to the other person to decide despite their frustration, is that lazy or is that MS fatigue?

If I suddenly have this intense desire to bebop around my apartment while listening to say, for example, a Rolling Stones song but have to sit before the first chorus, is that lazy or is that MS fatigue?  (Who am I kidding?  The Stones give me enough energy for a whole song.  How can it not when one thinks about the time Keith Richards passed out on stage but still finished his entire set from the floor?)

If I spend some quality time responding to important emails and then reward myself with 20 minutes of dog and baby videos on YouTube, is that lazy or is that MS fatigue?ID-100128348

Does any of this even matter?  It seems to me that is does.

Which is why I spend hours resting and employing my personal think tank on the matter.  Yet, I haven’t come up with an answer.

Shouldn’t the MS scientists and peeps be working on this?  Oh right, they’re actually busy trying to cure this beast.

And so it is up to us, the individual MS’er to try to figure it out for ourselves.  And to decide what we can live with and what we can’t in the realm between MS fatigue and being active.

It’s not that my MS fatigue or laziness hasn’t accomplished anything.  In the five plus years since my diagnosis I’ve moved, started this blog and published a book.  (Well, actually, my publisher published the book.  I just wrote the darn thing.)

I’ve probably done other things too; I’m just too tired to remember what they are.

I insist on not giving up and do my best to accomplish what I can, when I can. And I probably worry about this issue more than I should.

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But the fear of being lazy continues to haunt me as I struggle to figure all this out.

Thankfully, Mick and Keith say it’s ok for me to call myself lazy bones every now and then.

I like my lazy bones; my fatigued, doing the best they can, good old lazy bones…

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MS Hips DO Lie

New multiple sclerosis symptoms go musicalID-10019101

I was sitting in a meeting a couple of weeks ago when my left hip started to vibrate and shake.  It felt like how it felt in the old days when we had pagers or antiquated cell phones attached to our belts.

Immediately I went looking for my phone.  Did I forget to turn it off?  Was it on silent mode in my pocket?  This was very possible as I have said over and over, my cognitive abilities stink and so who knows where anything is on my person?

But no, my phone was completely shut down and resting lazily in my purse which was slung over the right side of my chair.  My hip continued to hum.  Was this a new MS thing?

Ironically, I was at an MS meeting and was surrounded by fellow MS’ers.  I wanted to ask them what they thought but what if this wasn’t MS related. How do I explain this bizarre vibrating going on?

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What if they thought I was crazy?

What if they thought I was a perv?

This vibrating, shaking hip thing continued throughout the afternoon and made me think of a Rolling Stones song, (of course it did,) called “Shake Your Hips”; specifically the line that says, “do the hip shake thing.  Do the hip shake thing babe.”

So now, while I was trying to concentrate on the meeting, I was also dealing with a hip dancing on its own and had an awesome Stones verse stuck in my head.

Since that meeting other body vibrations have started to occur; the right hip, one foot but I can’t remember which, (next time it happens I will clarify), a leg, (ditto on which) and back to the left hip again.

It would be nice if these limbs were dancing in a sequence but alas, since this is probably multiple sclerosis, of course they choose not to cooperate.

It might be for the best. Most dance places don’t get exciting until after 10 PM and I’m always in my pjs by then.ID-10042722

Then recently, I got mad at something.

Really mad.

Really, really mad.

So mad my body started to shake.

I had never had that happen before although I have heard people talk about it.  My body was doing its own thing once again, vibrating in parts and shaking all over.

When I get in a bad MS way I turn to my faith.

If I’m so bad off that I’m being way too stubborn to appreciate God’s help, then I turn to humor.

And when I am so grouchy that anyone who tries to make laugh might get their head bit off, it’s then I turn to music.ID-100146496

And so, I couldn’t help thinking of Shakira’s song, “Hips Don’t Lie.”  Except, as far as I was concerned, my hips were lying.  Since they couldn’t be bothered to tell me what they were doing, they were lying!

At least the line in her song fit, “ahh baby when you talk like that, you make a woman go mad…”

And mad I was.  I was mad at MS, I was mad at the world, I was mad at my weird body parts.

I was mad that when my hips were shaking they didn’t look anything like Shakira’s hips.

It’s a cruel world we live in folks.

One song sung by a woman too beautiful to be believed was not enough to get me out of my crabby place.   More shaky songs came to mind, like the Cars “Shake it Up.”

I laughed at the line that says “do the move with the quirky jerk.”  Oh yes, that’s one move my body does know.  I was quirky jerking all over the place…

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As I was letting my body do this weird multiple sclerosis dance across my living room, I grew tired, spent even.

I felt all shook out.

I felt all shook up.

And then, then I thought of the music of my Elvis childhood.  One more song might get my body to relax and get the anger out of my nerves.  I looked up “All Shook Up.”

Did you know it’s an MS song?

Seriously, check out the lyrics if you don’t believe me.  MS gems abound like, “Well, my hands are shaky and my knees are weak, I can’t seem to stand on my own two feet.”

And “My tongue gets tied when I try to speak, my insides shake like a leaf on a tree.”ID-100289380

Supposedly Elvis recorded this song about falling in love but I don’t believe it.  I have been in love, lots of times, and it never felt like this.

Then again, I am single so maybe I wasn’t doing it right?

The point is, before I knew it, I went from being mad at the world, to dancing my strange MS body around my apartment to watching old Elvis videos on YouTube.

And I felt better.

So, are vibrating body parts and shaking limbs more symptoms of multiple sclerosis?

If so, then I guess that’s just how it goes.

I try to stay positive and so I came up with this-

If my body is moving around on its own, well that’s a lot less exercise I have to do!

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Not Just About the Cupcakes

A multiple sclerosis statement

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There’s a new hero in my MS world.

He gets me.

And he gets away with saying things I want to say.

I learned a long time ago that heroes don’t always come with a cape. And sometimes they may even be con artists.

Life is too short and so if you find a hero, treasure him.

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Or her.

Speaking of short, my new hero is very short.  His name is Mateo and he is three years old.  He’s the “‘Linda listen’ cupcake kid.”

If you don’t know what I’m talking about and have access to YouTube do yourself a favor and do a YouTube search with the words “Linda, listen.”   You will find an awesome video of Mateo pleading his innocence to a judge, his mom.

The Crime- Mateo is accused of conning his grandmother into letting him have cupcakes specifically after his mother told him he was not allowed to have cupcakes.

The Defense-Mateo is pleading not guilty as since the alleged crime took place in his grandmother’s house, his mother’s law does not have jurisdiction.

The Sentence- If convicted, Mateo will face a pow pow on his butt.

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Some of you are probably parents who will insist that children should not argue with their parents or that a pow pow on the butt is not a proper punishment.   I’m not a parent so I’m not going to weigh in on those issues.  I will point out however, that when one of my nephews misbehaves a “simple time” out usually works pretty well.

Oh who am I kidding? My nephews are perfect.  They never misbehave.

These issues aside, Mateo is probably one of the best lawyers I have ever met and I used to work with a ton of them.  Really, Harvard should give him a teaching job.

And while I have on several occasions been guilty of eating cupcakes I knew I wasn’t supposed to, that is not why Mateo is my hero. He is my hero because he says outright, loud and clear, over and over, “LISTEN TO ME!”

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Haven’t you ever wanted to say that to those around you?  For me, it’s happening more and more, the longer I live with MS in my life.  And I’m not talking about the naysayers in the world, those that judge you and it doesn’t really matter if they listen to you or not: their ears will never hear you no matter what you say.

No, I’m talking about the people closest to us, those who really want to help.

And I love them- I truly and deeply do.  Mateo clearly loves his mother.  You can tell as even though he is calling her ‘Linda,” he also calls her “honey.”  I believe he does this so she knows his frustration has no bearing on how much he loves her.

But despite that love, he wants, no he needs, to be heard!

Likely you know what I am talking about.

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From an MS standpoint, one example may look something like this; someone asks you how you are feeling and you tell them.   And then they ask why you feel that way.  When you can’t tell them why they come up with non-MS reasons likely, to try to make you feel better about having MS.

But it doesn’t help to hear, “you do too much, you don’t do enough, you sleep too much, you don’t sleep enough, you need to rest more, you need to get out more, you need to fight more, you need to give in some…..”

It doesn’t help because we already know all this!!!!  We are constantly, daily, hourly, minutely (I don’t care if that’s not a real word- it should be,) trying to balance all this out ourselves.  And we have told you this a million times before.

“Linda, honey, listen to me!”

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Then there are the times you describe your symptoms and someone replies, “oh, don’t feel bad.  I do that all the time. If that’s MS then I’ve got it too, haha.”  Not that helpful.  Especially since what you just described is nothing like what I’ve described and I’ve described doing it constantly-daily, hourly, minutely (I really like this word.)

Then there’s “please let me know what I can do to help” and you think “awesome, great, fabulous.”  And when you say what would be helpful, say for example, A. B, C, or D,  you likely get B squared or E, F, and G in return,  And it’s really a bummer if G requires you to do  H, I , J and K just to make G work out for you.

Again, I and all the MS folks I know are super duper grateful for offers to help.   We just honestly appreciate help that looks like A, B, C and D.   As Mateo says, “you’re not listening to me!!”

Finally there’s us wanting to help someone else.  Our life has changed drastically with MS and while the changes may not be what we hoped, we still have lots and lots to offer.  So please, please, please believe us when we say “I can help by doing A, B, or C.  Will that help?  If so, I would be happy to do it.”

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But too often the person who needs the help responds “oh no, A, B, and C are way too much for you.  I will ask someone else to do that.   If you could just do D, that would be great.  D will be much easier on you.”  Despite after you have already explained why D would actually be too much for you.

At no time do I ever want to seem ungrateful.  That is why Mateo is my hero.   He makes his case in his adorable way and his mom hears him and is not offended.

It probably helps that Mateo is super cute, though technically that should not be relevant.  I just can’t help myself from admiring Mateo’s outright plea. Knowing that I would never be seen as cute if I was to boldly state “Listen to me,” I can feel better channeling my inner Mateo when necessary.

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But this isn’t the only reason why Mateo is my hero.  He’s also my hero because his argument got him on Ellen!

I’ve been trying to get on Ellen for years now and Mateo raised an argument and got on Ellen.

Just like that!

All he had to do was smile and give her a hug.  I could do that.  I may not be as cute as Mateo but I could flash a big smile and give Ellen a hug.

And if all that weren’t enough, Ellen gave Mateo his own private super hero tower of cupcakes!

And so, I’ll say it again.

“Listen, listen Mateo, honey, you’re my hero!”

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Happy Mother’s Day to my own Mom and to all the Moms out there…..

I’m not sure where the original video of Mateo came from but when I searched for it I found it on YouTube on-  thebigtinonetwork

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MS Sucks

Multiple Sclerosis attacks the Rolling Stones

 

It’s not like anyone reading this title is going to be surprised or argue with me.

MS doesn’t suck. What are you TALKING about? You are out of your mind!”

I have known this fact a long time as my sister, who had been living with MS for eight years, filled me in. To make sure there was no confusion, my first neurologist also informed me of this fact.

“I’m not going to lie to you, MS sucks.”

I try to take the suckiness in stride for the most part, hence my blog posts where I beat up on MS by making fun of it. But now MS has gone TOO far!!!

There is so little that makes me cool in this world and MS is seriously threatening my cool nerves and I am mad!

As you know from my prior posts, I am a Rolling Stones fan. Ok, I am technically a Rolling Stones addict. How anyone can not be a fan is one of the great mysterious of the world. These guys have been playing incredible classic rock music for over 50 years!

 

When the Beatles were singing about how all you need is love, yet biting each other’s head off in the studio, Mick and Keith were writing non sappy songs, beating each other up, and then going back to record their non sappy songs for over 5 decades. And like it says in scripture, “and on the eighth day, God created the Rolling Stones.”

So here is my MS problem.  The Stones will be in Boston, within two hours of me, breathing the same salty sea air as me and MS is trying to keep me away!!!

Multiple sclerosis is trying to attack my time with Keith and the boys in several sucky ways. First, the physical factors-can I last a whole 2 hour plus concert without having to run to the rest room a million times? Even if I can narrow my evening bathroom trips to something more normal, say 2-3 times in that span, what songs will I miss? Will I be able to find my way back to my seat?

Speaking of seats, I sit better than I walk and walk better than I stand. But you don’t sit at a Stones concert. It is impossible. How will my legs fare after 2.5 hours of standing in place dancing?

 

On a more serious note, the concert will be painful. As incredible as the music is, my MS can only tolerate certain decibels. OK, if the decibels are filled with classic rock by the icons of classic rock, I can deal. But there is the other noise/din that will continuously assault my nerve frayed brain.

Even the pain that the commotion would cause would be worth it. An MS flare, major pain and exhaustion beyond any I have experienced before would be worth it for the sake of the opportunity to see these guys one last time. (In spite of the six other times I have seen them perform one last time.)

But here is where the real problem lies. My dear friend, a fellow Stones addict-she is even more addicted than me if you can believe it- has been and would be my fellow concert goer. She is not able to drive at night. MS does not allow me to safely drive in the city- too many things coming at me leading to lack of control and major sensory overload. I could drive to the outskirts of Boston and we could take the subway in, but it is highly unlikely that after the concert I will be capable of managing the train and even if I did, unlikely I will be able to drive at that point.

 

My friend and I were trying to sort this out. Most of our priors Stones gigs were chauffeured by her husband. When they first met, he was seriously courting her and a concert was the least he could do to impress.

By the next show, they were newlyweds and were in the bliss of the newly married, eager to share this experience together; with me tagging along of course but I tried to stay out of the way of the mushiness.

Years later, they had a baby and her husband was so grateful for their first healthy child that the least he could do was take her and her friend to the show. Upon the birth of their second child, they desperately needed a night out and Stones were just the thing.

Now, after being married forever, her hubby is less enthusiastic. Perhaps he has forgotten his wedding vows, “I, newly besotted husband, promise to love, honor, and abide by my wife’s Rolling Stones addiction for as long as we both shall live.”

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I will have to remind him.

But until he re-discovers his desire for some more Stones excitement, my friend and I tried to come up with another plan. We talked about the problem the noise/commotion factor would cause me. She asked if ear plugs would help. They would, and I have some clear ones, but their help would be minimal at best.

I thought of who else might be willing to drive us. My dad drives me to my city doctor’s appointments. And he does have good taste in music. Perhaps he wants to go? The image of me enjoying the show with ridiculous ear plugs and being babysat by my dad sent shivers of extreme nerdiness down my spine.

Damn you MS!

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But alas, my dad is not free that night. And frankly, neither are the Stones which is another way MS is trying to keep me from going. Due to MS, I do not have a steady income and 50 years of the best music in the world doesn’t come cheap.

Just when you think you might possibly have MS figured out, it throws you another curve. In the scheme of life with MS and its worst case scenarios, I suppose losing what little cool factor you have isn’t the end of the world. But I will fight it all the way.

If I am not able to make it to the show, that night I will blast Exile on Main Street from my tiny speakers and lift a shot of Jack Daniels to my favorite band.

You don’t think Keith will mind if I use tea instead, do you? Whiskey gives me a killer headache.

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One week after the death of my friend, a fellow MS’er, and just days after the tragedy in Boston, I am in desperate need of a good laugh again. If you are too, I hope the above blog helps. If not, look for some of my blogs live on YouTube by typing in my name. I actually sing in one of them. That should get you laughing for sure!

 

 

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