Tag Archives: keith richards

Bigly Annoyed

An MS nonpolitical political post

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Dear Mr. Trump,

I would like my word back please.  You know the word.  The one people are teasing you about and saying you made up.  I know that you say that the news media is against you but I actual saw several trying to help.  They slowed down your words because they thought you might be saying “big league” and if you were saying “big league” they wouldn’t need to mock you for saying “bigly.” I’m not mocking you however because “bigly” is a perfectly acceptable word.  I know, because my MS brain created it.

Sometimes our thoughts come so fast, we don’t know if the thing that we are describing is a noun, deserving an adjective, or a verb requiring an adverb.  So “bigly” combines “big” for nouns and “greatly” for verbs making it the perfect word for all occasions.  It’s sort of like the other word I created “partalee,” a word my brain came up with when I couldn’t decide if I wanted to say “partly” or “partially.”  Now I don’t have to choose; perfect MS reasoning.

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My only question is when did you hear me say “bigly?”  Were you behind me in Walmart when I told the nice cashier how I bigly appreciated their low prices?  Were you on the other side of the divider at H&R Block when I said I was bigly pleased that I didn’t make enough money to need to pay any taxes?

Well, wherever you heard me use “bigly” I guess I can let it go.  BUT, if Merriam-Webster decides to add “bigly” to their next dictionary I WILL sue.  Perhaps you can help me with that?

Sincerely,

Yvonne deSousa

The thing is, after I finished my letter I grew concerned.  What if Donald Trump didn’t overhear me say bigly?  What if he came up with it on his own?  What does that mean about his brain? Could he have cognitive deficiencies from multiple sclerosis too?

I decided to investigate and the results are not encouraging.  Like me, he forgets things.id-100265731

He forgets meeting people he has met.

He forgets things he says he has said.

He forgets his opinions on things.

He even forgets important dates!  I’ll see you at the polls on November 28th my scary haired friend.

But so what; lots of people forget things.   But he also repeats himself just like I do!!!  I’m constantly saying “MS sucks” or “I’m so sick and tired of being sick and tired” or “Keith Richards is the man!”   Donald constantly says “believe me” or “disaster” or “great again.”

Perhaps those words are important and so not surprising that he repeats them.  It’s important that I share Keith’s greatness with the world and so repeating things isn’t in itself a concern.id-100285623

But what about the lack of focus and the lack of “umph” (not a word my MS brain created) to get things done?  Whenever he’s asked a question his brain takes over and he’ll be talking about healthcare and the next thing you know he’s talking about emails.

I do this kind of thing ALL THE TIME!

And he keeps meaning to release his tax returns and he’s promised people he’ll release his tax returns but he just can’t seem to get it done.

I can so relate…

Still, I wasn’t completely convinced until I saw that he also has trouble explaining what he means.  He knows what he’s thinking and knows the wonderful plans he has but when he wants to share them with other people he just can’t get the words out.  That is such a classic example of MS that I’m now very worried.

Can a person with multiple sclerosis handle having control of the country?

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Perhaps.

I couldn’t do it.  I can’t even handle having control of my TV remote control.

But they do say that MS affects people differently so maybe if he is elected he’ll do alright.

But still, I’d feel better if we knew for sure.  So Mr. Trump, for your health and for the health of our nation, I think I few MRI’s are in order.  Perhaps a spinal tap as well.   And while you’re at it, maybe throw in some neuro-psych testing too, just to be safe….

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Happy Halloween my friends!   I was going to re-post a Halloween blog but I thought the 2016 Presidential election was scary enough!  Can we dare hope that this whole thing is just a Halloween trick and we’ll wake up on November 1st to discover that our treat is other candidates?  Well, one can dream.

Or, one can have some really, bigly nightmares!

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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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The World is coming to an End Part 2

Multiple Sclerosis is even uncooler than originally thought

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If you read last week’s blog, part one of this crucial two part posting, you might have felt that I was exaggerating.   But consider even more evidence as multiple sclerosis and aging continue to drastically combine, making me and my world even uncooler than originally thought.

As someone smart who would have loved to have the talent to be in a rock band, I recognize that rock bands are cool; especially classic rock bands.   I recently discovered that my TV has on it something called Music Choice stations where I can pick a genre of music and just listen to it, 24/7 if I feel like it; or if MS is keeping me from sleeping, thinking or doing anything remotely productive.

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I didn’t know about this station previously as the stations I actually get on my television die after about channel 100.  Music Choice is in the 500 range and whoever goes all the way up there?

Anyway, they have a classic rock channel and of course, that would be the coolest one to watch.  And it’s even better than listening to a good radio station as no commercials interrupt the classically cool music.

As I was listening to this station I noticed that to give you something to look at while they play music they offer “Did You Know” questions about the artist whose song they happen to be playing at the time. I was super proud that I knew most of the answers to the questions.

Yes I knew that Mick Jagger went to the London School of Economics

Yes I knew that Jimi Hendrix lit his guitar on fire at the Monterey Pop Festival

Yes I knew that Led Zeppelin was inducted into the Rock and Roll Hall of Fame in 90’s.

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What a relief!   MS hasn’t robbed my brain of knowledge of important information!

But after the trivia questions, the channel shows advertising relevant to the person watching the channel.  And what did the Music Choice Classic Rock channel offer?  Advertisements for Medicare, knee replacement surgery, Life Alert bracelets and loan payments!

Seriously!  The channel could at least take me back to my party days by offering fun beer and wine advertisements.

I no sooner thought that when they showed another advertisement- for help with addiction!

Everything I ever understood about what I thought was cool and what wasn’t just got completely shifted around as I sat on my sofa, enjoying the music but paranoid about what ad would pop up next.

Speaking of paranoid, did I know that Black Sabbath’s song Paranoid was their only top 20 hit?

No, I didn’t know that one.  And like that, my worries about the world coming to an end were back.

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I couldn’t even take comfort in the fact that my favorite guitarist, Keith Richards, wasn’t helping me sort this all out.

Keith Richards, the hardest rock partier of the seventies and one of the coolest musicians ever, had just published a children’s book!!!

Who could have possibly seen that coming???

 

True, it is a book about a cool kid with a cool grandpa who both play cool guitars.

And true, it has really cool illustrations done by Keith’s own daughter.

But still, this classic of classic rock guitarists writing children’s books-how am I supposed to handle that?

Luckily I took comfort in the fact that if Keith was going to write a kid’s book at least he wrote a cool one. I pondered further and wondered if the answer is that maybe perceptions change as we age and/or as MS robs us of things that we treasure.

Yes, MS is still super uncool.  But maybe it’s not that simple.

So please allow me to take pride that, for the most part, I can still recognize cool even though cool might not be as obvious as it used to be.

MS= Very, very uncool

Worrying about what’s cool and what’s not=uncool

Living life with whatever you may need to rock it= Cool

Realizing that changes in life don’t mean that the world is coming to an end= cool

People with MS kicking MS butt= Super, super cool!  Probably, the coolest of the cool…

Next to Keith Richards of course.

 

A letter to my awesome readers-

Dear friends,

Did you know that you can help fight multiple sclerosis?   I believe that one way is by using your sense of humor to fight back!  Every time you smile, giggle or laugh out loud, you are fighting back!

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Another way you can fight MS is by purchasing my book/ebook, MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis where a portion of the proceeds from each sale goes to nonprofit agencies helping people with, or who are fighting chronic illness.

But here’s a new way to fight back.  By checking out www.iConquerMS.org 

This website, sponsored by the Accelerated Cure Project for MS is described as a research initiative where MS patients can share their health histories and work together to find the best research to develop a cure.  With patients working together, who knows what we can do!

Check it out here to see if you would like to become involved..

www.iConquerMS.org

 

 

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Two Years Later- Still December Dates

An MS’er looks at the calendar

 

While this blog was written two years ago, since I just returned from the same trip, and dates do not change, I thought I would offer it to you again.  Mostly because I am way too wiped out to come up with anything new this week….

It’s the Monday morning after a month long stay in another state, visiting relatives.   My family and I had returned late on the previous Thursday evening.   The next day it was all I could do through my fatigue to go to the post office and pick up the collected mail.

(I had written about after travel stress and mail previously- check out the blog post from last year’s trip, Its On My List.)

 

I spent the weekend alternating between resting and going through the mail, resting and sorting the mail, resting and paying late bills, and resting and responding to other mail.

Before I stepped into the shower this Monday morning I looked at my calendar and saw written for today, 12/17/12, “confirm insurance, get approval and schedule MRI.”

While I was gone, changes had been made to my insurance and I knew getting this straightened out was the day’s priority.  Yet in the shower, the date was bugging me.  There was something more to 12/17, but what?

It didn’t help that December dates are pretty busy for me and not just because of the huge holiday that everyone knows about and adjusts their month around.

(You know you do- even if you don’t celebrate Christmas you are making plans as all your favorite places are closed that day!)

It’s also a birthday galore month for me (besides the big guy’s of course.)

 

This particular December month is filled with the birthdays of one nephew, two cousins, an aunt, a niece-in-law who is also the mother of my two great nephews, a friend turning 40, another friend who turned 40 last year,  a third friend who I thought was turning 40 as my MS brain completely forgot we celebrated her 40th last year with the other friend who turned 40, and a fourth friend who is my same age but who I can never remember if she is younger than me thus hitting my age this month or is older and is hitting the next dreaded year first.

At one point I discovered that a cousin-in-law I have grown particularly close to this past year also had a birthday this month that I almost missed-thank goodness for social media birthday updates.

 

While watching the Rolling Stones 50th anniversary Pay per View concert at a friend’s house, I was reminded that Keith Richards birthday was coming up (12/18/43 for those who would like to note it on their own calendars.)

I have always been a Stones fan and think Keith is the coolest of the cool and one of the most talented undead humans on our planet.  But remembering his birthday is a bit extreme for my taxed brain.

Perhaps I remembered because I had listened to the audio CD of his autobiography Life this past summer. Still, retaining the actual date is random.

 

(Speaking of MS as this is an MS blog, did you know that Keith had a beloved aunt who suffered from MS?  He has a real understanding and sympathy for what living with MS is like.  How much closer to perfection can this rocker get?)

And I don’t care what all these folks say, they must have gotten ripped off from the birthday fairy or Santa Claus when they were kids.

Anyway, what is up with 12/17? There is that whole end of the word thing but that is scheduled for 12/21.

 

I finished the shower and made calls and miracle of all Christmas miracles, the calls went smoothly and I scheduled my next MRI.  It wasn’t until evening while I was writing on my calendar a reminder to stop taking Aleve 4 days before the MRI (and already bemoaning what an achy miserable blob I will be those days) that it FINALLY occurred to me what it was about 12/17 that was bugging me.  12/17/09 was the day I was diagnosed with multiple sclerosis.

Here is one of the many weird ways MS works. Every MS’er I know (me included) automatically remembers the day of their diagnosis. I can recall the date of diagnosis quicker than I can recall my social security number.

Yet, looking at the calendar on the exact day, and doing MS related errands involving this sucky anniversary, I couldn’t get my head around why this date was flashing like a black flag in my tired MS brain.

 

Oh, but the memory the understanding of the date brought.  Three years ago I was a hurting, exhausted, smoking, depressed, stressed mess working in a job I generally enjoyed but was the root of a lot of the stress.  And I was barely walking.  Yet I was trying to focus on the spirit of the Christmas holiday despite MRI’s and doctor appointments.

Today I am less hurting, not smoking, less stressed, not depressed, better walking, not at that job, less of a mess.

I’m still freaking exhausted ALL the time though and am about as sick of dealing with fatigue as folks are sick of hearing me whine about it!!!

I have discovered skills that I didn’t know about three years ago (writing and public speaking but I guess referring to them as skills is really up to readers and the few audience members I have encountered thus far.)

 

And clearly, I am still as spacey as I was back then as evidenced by my spending the day trying to figure out why this day was standing out even as I repeated the same day to MRI people scheduling my three year MRI!

Here is another thing that has not changed.   In 2009, the most important date was the one coming up the following week.   Even through the pain and the fear about what was wrong with me, 12/25 was the most important item on my calendar.

If it is all the same with you, I will continue to focus on the biggest date of the month.  So for the others (12/3, 12/3, 12/5, 12/15, 12/16, 12/17, 12/18. 12/19, 12/24, 12/27, 12/28, and 12/29,) your dates are ok on my calendar.

But the one that brings me the most joy is 12/25.

Merry Christmas Everyone and whether you celebrate Christmas itself or not, a healthy, blessed holiday season to all……

 

PS  Helpful holiday gift hint- MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis makes a fun gift for everyone!

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Brain Cog Fog Gets an Evaluation

A little peek at a little MS Madness!

As the writer I claim to be, I could lie and make up some brilliant excuse as to why today’s blog is not as creative as I usually try to make it.

 I could write that I am in Paris being wined and dined by a handsome stranger.

Or I could write that I am at Keith Richards’ Jamaican villa, lying in a hammock and looking at the crystal blue water while he writes new music nearby.

Maybe, I might scribe, I was abducted by aliens, for real this time, and they haven’t brought me back to Earth yet.

But the truth of the matter is that I am just tired; really tired. I am so tired, that miraculously, MS hasn’t given me anything new to write about this week.

And, if truth be told, I am still trying to sell a book or two and thought maybe today, I might just entice you with a look at an excerpt from MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis.

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Since my brain is so tired, I thought the excerpt I would share should appropriately be from a chapter called Cognitive/Schmognitive which details brain cog fog and specifically, my first neuropsychological evaluation.

(Try saying that five times fast.  If you can, you don’t need a neuropsychological evaluation.)

If you like this excerpt and would like to get your own copy, you can buy one where all other amazing literary tomes are sold; except maybe mega brick and mortar stores as they don’t quite love MS Madness yet.  But maybe if you request it……

 

Thank you friends!   And remember, a portion of the proceeds from each sale of MS Madness goes to non-profit agencies searching for a cure for multiple sclerosis or non-profit agencies that help those living with chronic illness.

Have a restful weekend.

 

“…….The doctor introduced me to her assistant and we started the process. After some brief questions she showed me a drawing and asked me to write in paragraph form what I saw. I thought this was likely a simple exercise to show off my most basic grammar and spelling skills. I had just told her the only career path I could conceive of was becoming a writer. I had to prove that it was at least a possibility. I asked how much time I had. She told me to take all the time I wanted. Did that mean the entire four hours? I think she was expecting a basic description of woman doing this, child doing that, etc. But I saw a whole story in the drawing and wrote it, complete with a dramatic subplot and a commentary on the decline of a simple moral compass in current technology dependent middle class America. Eventually the doctor asked me to stop. Her report on the testing noted: “narrative handwriting sample was creative in content.” Perhaps I should have asked for it back to see if I could publish it. I needed the money, after all.

 

From there, things went downhill. Her assistant took me into this tiny room where she proceeded to have me memorize, spell, associate words, disassociate words, dissect words, add, subtract, remember, repeat and any other thing you can possibly do to someone’s brain. Slowly my head began to expand. Just remembering the test is bringing the awful headache back. The final report shows I tested pretty well but it didn’t seem so at the time. At one point, I could not tell the assistant the name of our president. Instead, I said, ‘I can’t believe this, I love him. I voted for him. I can see him in front of me and can see his family. He has a weird name but is a good guy.’ My Republican friends said that this memory loss was because my brain was blocking out disturbing thoughts.

 

The part of the test I did the worst on was identifying something missing from a picture. Maybe it was the artist in me altering common perceptions, but they would show me a picture and ask me what was left out. I couldn’t tell them and would say, ‘nothing, everything is there.’ The assistant would insist something was definitely missing. Then, to make her happy, I would make something up. If it was a picture of a puppy, I would say a little boy. Every puppy needs a little boy to hang out with. And the assistant would begin writing in her notepad. One picture was of a leaf, what could possibly be missing from a picture of a leaf? A leaf was a leaf. But the assistant would state ‘No, something was definitely missing,’ and we would start all over again.

 

One picture was of a mother and son walking on the beach. I grew up on Cape Cod. If something was missing from a beach picture I should have known what it was. I kept guessing—a fishing boat, tourists, whales, a keg of beer, sandcastles, nude sunbathers, seaweed, litter, suntan lotion, a cooler, shells, keep off the dunes signs, Jaws, park rangers. The assistant scribbled away………………….

 

Three weeks later the doctor called and said she had the test results. She told me the MS had caused my brain to slow down a bit. She compared it to her elderly father who didn’t have dementia, but whom she had to speak to slowly so that he would better understand her when she was telling him something. She said my brain was like that, an old man’s. She also told me that I should accept that my multi-tasking skills, skills I once prided myself on, were pretty much shot. I would now have to realize it might take me longer to process things, especially since the test was done in a controlled environment. Exhaustion, stress, and noise would likely increase my symptoms. She recommended that I visit a vocational specialist, whatever that was, and that I only work part time. She wouldn’t tell me what was missing from the beach picture as she said someday I may need to do the test again.

 

The breakdown of the test results seemed to be that cognitively, I wasn’t a total mess—I was just an old man. Good to know.”

*********Super top secret information just for you- more excerpts from MS Madness! are included in the BOOK tab of this website*******************

 

Zen and the Art of Resting

Multiple sclerosis procrastinating, I mean, meditating

When I was in college, some three trillion, billion years ago, most of my dorm mates had to read a book called Zen and the Art of Motorcycle Maintenance.   I wasn’t in the class that assigned the book and so I didn’t have to.  Back then I cared very little about Zen which seemed to me to be sort of a hippy/dippy concept.  I cared even less about motorcycle maintenance.

But the title struck me and I have always thought that I should read it myself one day.  It is on my list of things to do; along with clean my house, order a new auto injector for my MS shots, meet Keith Richards and win the lottery.

I bring this up because I have been thinking about Zen a lot lately.

In my book, MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis, I make the comment that “despite what every two-year- old on the planet will tell you, naps rock.”

But here is a secret just for you, my lovely blog readers, I actually don’t like naps.  I know many, many people with MS and without who think naps rock.  And I know several two-year-olds who greatly protest naps but will snooze away a whole afternoon if you let them.

For me, I find naps uncomfortably disorientating.  I always wake up not knowing where I am, what day it is, what time it is, freezing in the winter, hot and sweaty in the summer and in every case, desperately needing to pee.  While I try to readjust my brain and get to the bathroom quickly, I feel out of sorts.

Thus I have learned that even with the extreme fatigue MS delivers on a constant, daily, hourly, minute by minute basis, naps are not for me.  I’m still tired though and what I have discovered is that I will often fall into a state of consciousness for which there is no name.

Here’s how it used to happen-  I would start to read say, and before I knew it, my eyelids would get droopy. I would move, shift my position in some way so that I would not fall asleep.  And I wouldn’t sleep.  I would be aware of my surroundings and the state I was in, completely content but without thought or focus on anything except that I was resting.

It’s a beautiful thing.  It seems to be a state of peace and rest that must be sort of zen-like.   And so I looked up Zen to see if that was what the word meant, being in a rest so complete that it is actually more restful than sleeping.  I can make this ‘more restful than sleeping’ claim because I have a pretty active dream life.  In my dreams I’m always fighting a dragon, watching a movie or running from police.  What I am doing while I am sleeping does not seem to be resting at all.

Wikipedia describes zen as “the attainment of enlightenment” and says that the word Zen itself translates to “absorption or meditative state.”  (For the record, Wikipedia was not clear on where and when you capitalize the word zen-not to me anyway- and so I keep alternating it here in this blog post figuring at one point I will get it right.)

An “absorption or meditative state”- yes, that perfectly describes the zoning out I do while I am attempting to rest away some MS fatigue.

All of this would be well and good except that it is multiple sclerosis we are talking about and thus, there’s a problem.   Lately I’m noticing that I am falling into my own personal Zen when I wake up in the morning.  This is tricky as my morning is already pretty busy.

Usually I wake up and head directly to the bathroom.  Then I take my thyroid pill with a glass of water and have to wait 30 minutes to eat or drink anything else.  I try to use that 30 minutes as prayer time.

Then I get up and have a cup of tea while I check all of my emails and social media sites.   Then I have breakfast.  By this time it is often late in the morning, way too late to try to squeeze exercise into my routine.

Last week I woke up and somewhere between my prayer time and my cup of tea, I went to my zen place.  For over an hour I laid in bed not praying, not reading, not watching tv, not thinking, not sleeping.

It happened again twice this week.  What this means is that if I wake up around 9, by the time I do the above AND include fitting in my needed Zen, I am just having breakfast while the rest of the world is clearing their lunch dishes.

MS already robs me of much needed hours in the day by making it take longer for me to do EVERYTHING and needing more hours of sleep than most people.

And yes, I have tried to go to bed earlier but that just makes me sleep even more.  I’ve tried to set my alarm for a regular wake up time but in my dream/sleep state or even in my meditative state, my semi conscious self just shuts the alarm off, unconsciously.

Of course I worried about the severity of this particular problem.   Then I found a quote from Zen and the Art of Motorcycle Maintenance.

No I still have not read the book.  I found this quote on Goodreads thank you very much.

“The place to improve the world is first in one’s own heart and head and hands, and then work outward from there.”

Robert M. Pirsig

That made me feel better.  I am not being lazy when I am in my zen and even if I don’t have the time for Zen, it’s crucial as I am improving the world by improving my heart and my head and my hands.

Yes, there was a time when I would get a lot more done in my mornings and be productive but that was zen, this is now.  Now, I must spend at least part of my day on improving the world.

Phew-what a relief.

If you are looking for me you can likely find me in my meditative state, perhaps under my little brother’s motorcycle….

Happy Father’s Day friends!  The picture below shows my oldest nephew in his Zen place with his two sons.   I have included it as a nod to zen and fathers and because I think it’s a freaking riot!

drewresting

Finally, speaking of Goodreads– ok, it was me who mentioned Goodreads a couple of paragraphs back to usher in this handy tie in- don’t forget the Goodreads giveaway for MS Madness!   A “Giggle More, Cry Less” Story of Multiple Sclerosis is only open until June 22!

The link is below if you know anyone who would like to try to win a free copy….

MS Madness Goodreads Giveaway

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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 StarsJack 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!!!

 

 

 

Like an MS Rolling Stone

Classic rock for MS’ers

Picture 22

I have been terribly remiss in keeping you, my dear friends, posted on important things going on. I have completely dropped the ball on filling in the details. For that, I greatly apologize.

I know you have all been on pins and needles, different pins and needles from the ones your MS usually puts you on, to hear how things went in June. Did I survive the Rolling Stones concert over one month ago?

Well, finally, here’s the scoop.

I did survive and it was absolutely amazing!

I attended the show with my Rolling Stones fairy godmother and another friend of ours. Three hot, classic rock chicks psyched for some great music hit the road. And incredibly, we found Keith Richards stranded by the side of the highway in need of a ride to his own show!

keith2

We picked him up and he was very grateful.

Wait, something doesn’t feel right. Oh, MS moment time.

That didn’t actually happen to my friends and me. It happened to some people I don’t even know but I saw it on the news. And the rock star was not Keith but Dave Matthews. Sometimes my MS brain confuses things here and there.

We did however get to meet Mick outside. I have proof-please see the photo below of my Rolling Stones fairy godmother and I posing with him.

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I know what you are thinking. That is not Mick but just some guy in a Mick Jagger mask.

We thought that too. So we asked him and he assured us that yes, he was the real thing scoping out the before concert crowds. Exciting!

But here is the main point- multiple sclerosis is no match for the longevity and talent of the Rolling Stones! Not only did I survive but thrived through the concert!

stones2

I didn’t need the embarrassing ear plugs as the music was just pure classic and of incredible sound quality. Beautiful music to my super sensitive ears- total score.

I only needed one bathroom break and since our seats happened to be somewhat near the ladies room, I only missed one verse of Midnight Rambler which was broadcast from the restroom speakers anyway.

And, I was only mildly fatigued. My unusual energy didn’t come from any legal speed prescription from my neuro- my MS brain forgot to ask for a new RX.

Perhaps this energy came by osmosis from Mick to me.

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How does he do it? Mick just doesn’t stop. He sang, danced and ran around more than my two year old nephew. And even my nephew needs a nap after two hours. Mick went for almost three.

It was a great night in the city of Boston with Mick even sporting a Bruins jersey to add even more perfection to the show.

mick bruins

Since I miraculously managed to enjoy the show without too much fatigue, I also wasn’t experiencing any brain fog. As such, I was able to discover something new about the Stones catalog.

I have mentioned before that Keith had an aunt who died from multiple sclerosis and so he is sympathetic to our plight.

What I didn’t realize before this June night was that so much of their catalog is written specifically for us MS’ers.

Thank you Keith!

Don’t believe me? Please allow me to offer these numerous examples just from the 22 song set list of the first Boston show.

at garden

Sway– “It’s just that demon life has got me in its sway”

You’ve got the Silver– I do. I do have the silver. Between the brace, the cane, the wheelchair and the medic alert bracelet, we MS’ers sure do have some silver.

Start Me Up– Who needs Provigil when you’ve got Mick, Keith, Ronnie and Charlie to get you going?

Jumping Jack Flash– the ultimate spasticity song if ever there was one!

You Can’t Always Get What You Want-Tell me about it. I would like one night where I don’t have to get up to pee 20 times. How about a night when I only have to get up ten or maybe just eight or nine times? That’s what I want. Is that too much to ask?

I’m Going Down– Please. If that is not an MS anthem then I don’t know what is….

One More Shot– As in, one more shot before I can start Tecfidera?  Yea!

Doom and Gloom– “Feeling kind of hurt. Sitting in the dirt. All I hear is doom and gloom.”

doom

Before They Make Me Run-“….pills and powders, you can choose your medicine….” Keith predicted the end of injections back in the 70’s!

Midnight Rambler– A song describing an MS’ers brain on one of their middle of the night bathroom jaunts.

Sympathy for the Devil– the devil is a veiled disguise for the insidious illness known as multiple sclerosis. And it deserves no sympathy which is the point of the song. “Hope you guessed my name. But what’s puzzling you is the nature of my game…”

Get Off of My Cloud– An MS’er’s response when non-ms’ers say something that ticks us off! “Hey! You! Get off of my cloud! Don’t hang around cause two’s a crowd…”

Tumbling Dice– I didn’t fall exactly, I just took a tumble with one of my MS friends. “Baby there’s a fever in the funk house now. This low down bitchin’ got my poor feet a itchin’

dice

Satisfaction– As in I can’t get no….”Cause I try and I try and I try and I try, try, try”

So there you have it. Over half of the Stones set list for just one of their many concerts are multiple sclerosis themed.

Don’t believe me? Think this is just a coincidence? Well, I have proof.

I asked Mick when he posed for the picture with us and he said it was true. And this Mick wouldn’t lie, would he?

tongue

 

December Dates

An MS’er looks at the calendar

It is the Monday morning after a month long stay in another state, visiting relatives. My family and I had returned late on the previous Thursday evening. The next day it was all I could do through my fatigue to go to the post office and pick up the collected mail. (I have written about after travel stress and mail previously- check out the blog post from last year’s trip, Its on My List.)

I spent the weekend alternating between resting and going through the mail, resting and sorting the mail, resting and paying late bills, and resting and responding to other mail.

Before I stepped into the shower this Monday morning I looked at my calendar and saw written for today, 12/17/12, “confirm insurance, get approval and schedule MRI.”

While I was gone, changes had been made to my insurance and I knew getting this straightened out was the day’s priority. Yet in the shower, the date was bugging me. There was something more to 12/17, but what?

It didn’t help that December dates are pretty busy for me and not just because of the huge holiday that everyone knows about and adjusts their month around. (You know you do- even if you don’t celebrate Christmas you are making plans as all your favorite places are closed that day!) It is also a birthday galore month for me (besides the big guy’s of course.)

This particular December month is filled with the birthdays of one nephew, two cousins, an aunt, a niece-in-law who is also the mother of my two great nephews, a friend turning 40, another friend who turned 40 last year, a third friend who I thought was turning 40 as my MS brain completely forgot we celebrated her 40th last year with the other friend who turned 40, and a fourth friend who is my same age but who I can never remember if she is younger than me thus hitting my age this month or is older and is hitting the next dreaded year first.

At one point I discovered that a cousin-in-law I have grown particularly close to this past year also had a birthday this month that I almost missed-thank goodness for social media birthday updates.

While watching the Rolling Stones 50th anniversary Pay per View concert at a friend’s house, I was reminded that Keith Richards birthday was coming up (12/18/43 for those who would like to note it on their own calendars.)

I have always been a Stones fan and think Keith is the coolest of the cool and one of the most talented undead humans on our planet. But remembering his birthday is a bit extreme for my taxed brain.

 

Perhaps I remembered because I had listened to the audio CD of his autobiography Life this past summer. Still, retaining the actual date is random. (Speaking of MS as this is an MS blog, did you know that Keith had a beloved aunt who suffered from MS? He has a real understanding and sympathy for what living with MS is like. How much closer to perfection can this rocker get?)

 

I don’t care what all these folks say, they must have gotten ripped off from the birthday fairy or Santa Claus when they were kids. Anyway, what is up with 12/17? There is that whole end of the word thing but that is scheduled for 12/21.

I finished the shower and made calls and miracle of all Christmas miracles, the calls went smoothly and I scheduled my next MRI. It wasn’t until evening while I was writing on my calendar a reminder to stop taking Aleve 4 days before the MRI (and already bemoaning what an achy miserable blob I will be those days) that it FINALLY occurred to me what it was about 12/17 that was bugging me.   12/17/09 was the day I was diagnosed with multiple sclerosis.

Here is one of the many weird ways MS works. Every MS’er I know (me included) automatically remembers the day of their diagnosis. I can recall the date of diagnosis quicker than I can recall my social security number.

Yet, looking at the calendar on the exact day, and doing MS related errands involving this sucky anniversary, I couldn’t get my head around why this date was flashing like a black flag in my tired MS brain.

Oh, but the memory the understanding of the date brought. Three years ago I was a hurting, exhausted, smoking, depressed, stressed mess working in a job I generally enjoyed but was the root of a lot of the stress. And I was barely walking. Yet I was trying to focus on the spirit of the Christmas holiday despite MRI’s and doctor appointments.

Today I am less hurting, not smoking, less stressed, not depressed, better walking, not at that job, less of a mess. I am still freaking exhausted ALL the time though and am about as sick of dealing with fatigue as folks are sick of hearing me whine about it!!!

I have discovered skills that I didn’t know about three years ago (writing and public speaking but I guess referring to them as skills is really up to readers and the few audience members I have encountered thus far.)

And clearly, I am still as spacey as I was back then as evidenced by my spending the day trying to figure out why this day was standing out even as I repeated the same day to MRI people scheduling my three year MRI!

Here is another thing that has not changed. In 2009, the most important date was the one coming up the following week. Even through the pain and the fear about what was wrong with me, 12/25 was the most important item on my calendar.

If it is all the same with you, I will continue to focus on the biggest date of the month. So for the others (12/3, 12/3, 12/5, 12/15, 12/16, 12/17, 12/18. 12/19, 12/24, 12/27, 12/28, and 12/29,) you dates are ok on my calendar. But the one that brings me the most joy is 12/25.

Merry Christmas Everyone and whether you celebrate Christmas itself or not, a healthy, blessed holiday season to all……

Note- Joy is one of the words we associate with the Christmas season. This year, after the horrific, violent event of 12/14, joy may be much harder to find. If so, please remember the other words most closely associated with Christmas- peace and love. When we can focus on peace and love, we can come closer to healing.

Image courtesy of [David Castillo Dominici] / FreeDigitalPhotos.net

Image courtesy of [Stuart Miles] / FreeDigitalPhotos.net

Image courtesy of [digitalart] / FreeDigitalPhotos.net

Image courtesy of [luigi diamanti] / FreeDigitalPhotos.net