Tag Archives: MS fatigue

Multiple Sclerosis and the Ugly Truth

What’s so bad about a little fatigue?


“I am sick and tired of being sick and tired….”

I didn’t write the quote above.  Nor did I credit it to anyone as I am not sure who to credit it to. I have heard it so much and seen it so often I think it could be attributed to hundreds, no thousands of folks, especially if those folks have multiple sclerosis.

(To the real, original quote author, we MS’ers are taking over your quote; we’ve earned it.  Perhaps you should go take a nap.)

Here are some other quotes about fatigue that I find interesting and can credit to its authors.  At least, I think I can.

“Sometimes it takes me more than 8 hours to get nothing done.”  Snarkecards

“Going out with other adults is 90% explaining to each other how tired everyone is.”  Also Snarkecards

“We’re all tired.  Yesterday my pee was so tired I had to wake it up with a shot of whiskey before it would come out.”  Alan Bates in the movie The Rose


Ok, the last quote has nothing to do with MS fatigue; unless Bette Midler’s character in The Rose had MS.  She certainly had a suitcase full of drugs to rival that of most of the MS’ers I know.

A recent poll of my fellow MS’ers on a Facebook page asked what we missed most about our Pre-MS life.  Many said energy.

The National MS Society’s webpage estimates that 2.3 million people have multiple sclerosis.  They also estimate that number is low.  And they estimated that 80% of those people are dealing with chronic fatigue as a result of their MS.

What does that really mean?

It means there are a ton of exceptionally tired people existing on the planet.

And the brainiacs say the zombie apocalypse isn’t real!


Did you know that the word ‘collapse’ is a synonym of the word ‘fatigue?’  I forgot where I found that but I swear, I did see it somewhere.  Here are some other synonyms of ‘fatigue’- weariness, lethargy, and washed out, just to name a few of my favorites.

The Free Dictionary by Farlex defines fatigue as “the weakening or failure of a material resulting from prolonged stress.”  For MS’ers, we are that material.

The point of this particular blog post is for me to show an example of what MS fatigue looks like in my world.

“I’m so tired just the thought of brushing my teeth makes me want to start sobbing.”  Yvonne deSousa

I wrote that one. I really did.

“The fatigue is like the fatigue and over all body aches you get when you have the flu, multiplied by 1000.”   Me      I wrote that one too.

Recently I was trying to explain to my mom the difficulty of consuming a wholesome, healthy snack, an apple. What could be better for you than an apple?  Of course, the first thing you have to do is wash it  carefully due to all the pesticides that are used now.   Then you eat it.  It should be that simple.

But for me, it’s not.


Every time I bite an apple, I take a huge bite out of the inside of my cheek; no longer healthy unless juice from the apple dissolving into an open, bloody wound is nutritious.  So I bought an apple corer figuring that breaking the apple into smaller pieces might save me from myself.  Except the apple corer was hard for my already weak hands to maneuver and to find the strength to cut through the apple completely.

My mom suggested that I peel the apple first.  This involves my super tired hands grabbing a sharp instrument to peel away the healthy apple skin before then coring the apple.  Suddenly an easy snack has used up the energy it would take for most people to prepare a four course dinner and all I want to do is rest.

And the apple itself is now chunks of something brown and rotten as all of this took so long for me to accomplish that the apple has given up hope and become tired too.

Many people without MS say why don’t you get enough sleep?

The irony is that sleeping or not sleeping has absolutely no bearing on this type of fatigue.

Other people may ask, “what’s the big deal about fatigue? Lots of people are tired and they just have to deal with it.”


And so do MS’ers, but it’s not always pretty.

Every year my church holds a special mass for fishermen to celebrate our fishing heritage and to pray for safety and good fortune.  I love this mass and it’s my favorite of the year- even more so than Christmas or Easter.  The church fills up, and yes, even more so than Christmas or Easter.

The altar is decorated and the Bishop of our diocese, or some other mucky muck on his behalf, celebrates the service.  My friend and I carry the gifts to the altar.

For non-Catholics the gifts are the unconsecrated bread and wine, not a box from Tiffany’s or an ipad.

This year I tried to balance as well as possible but the mass follows lots of other celebrating and those celebrations took place among the extreme heat and humidity of early summer.   I went to bed early and did my best to rest up.   It was very important to be non-fatigued since when MS makes you fatigued, everything else ratchets up considerably; your weakness, your clumsiness, your cognitive difficulties, your balance issues, your poor vision, etc.


Whatever MS makes difficult for you, it makes even more difficult if you have even the slightest bit of fatigue.  This was worrisome as far be it from me to drop the soon to be blood of Christ on the altar before I am able to hand it off to the priest.

If he drops it, well then that’s his problem.

I pulled into the lot of my church and was rudely greeted by a fellow parishioner instructing me where to park.  I was not able to park in the spot he recommended (long story,) and politely tried to explain this to him.

Seems he took his parking duties way too seriously and began to argue.  This caught the attention of another parishioner and a small scene ensued and my sensitive feathers got ruffled.

Had this situation happened before MS  I would have,

  1. Taken the high road by ignoring the parking dictator and felt lousy about it at the time but better for it later


2.  Used some non-Christian language to humiliate him immensely,                                     causing me to feel great at the time but lousy later.

What my MS fatigue caused me to do instead was cry.

Yes, an embarrassing, inappropriate, obnoxious, ugly cry.


I tried to get to the bathroom to pull myself together but there was a long line.  I tried to turn away from people to pull myself together but people saw me anyway.  The more people asked me what was wrong, the harder I cried.  When, through my sobs, I could only say that the problem was a minor parking dispute and not the end of the world as we knew it or a zombie apocalypse, they backed away.

I’m sure they were thinking ‘drama queen,’ ‘cry baby,’ and ‘lousy make up job’ as my mascara was now all over my face.

If I had my way I WOULD NOT have had a breakdown during my favorite religious event of the year.

It was not my choice to lose it over something completely minor in the grand scheme of life with or without multiple sclerosis.  I could neither predict the breakdown nor could I blame multiple sclerosis directly for it.


I COULD blame the parking guy.

But I am supposed to be working on forgiveness, peace, love and all that other better human, better spirit stuff.

I can however, blame multiple sclerosis fatigue for making everything about my mind, body and psyche weak, for taking over all control of my senses, for once again doing what it was going to do despite all my best efforts to stop it.

And of course, there’s no way to explain this to everyone who saw my breakdown, that it was really MS fatigue’s fault, unless I happen to put it in a blog post….

That is the ugly truth of MS and the horrible fatigue that comes with it.  It is frustrating, uncontrollable and, yes, let’s face it, ugly.


Luckily for me, the visiting priestly mucky muck gave a funny homily and humor always cheers me up.

And God is good; as weak as I was I didn’t drop the altar gifts.

With the makeup fail caused by tears I did look like a zombie but hey, God loves us all right?

I choose to believe that includes zombies…




Pumpkins, Pumpkins Everywhere

An MS’er acknowledges autumn, again


******This blog was first published last year.  But the sentiment is so relevant, I had to post it again.  Plus, it was a busy week.******

I have said it before and I will say it again, I love fall!  And again, I really, really love fall!  It is my absolute favorite season by far!  When I tell grouchy people this they say, “ya, well, fall means winter is coming soon.”

To me that is ok; winter is my second favorite season!

I love fall so much that, MS fatigue aside, I don’t even bother to sweep up the dead leaves that blow into my front doorway every time I go in or out- they are just awesome fall decorations!

Here are some reasons why I love fall- cooler weather, cool breezes, barely any humidity, cooler weather, no bathing suits, cooler weather, and pumpkins.  Pumpkins are definitely a great part of fall.


I am not very artistic, so carving pumpkins has never been my thing.  But I like looking at carved pumpkins.

Mostly, I love the essence of pumpkins.   So much so, that I have pumpkin room deodorizer and a vanilla pumpkin scented candle.

I thought pumpkin was a vegetable but it turns out it is actually a fruit.  The confusion comes from the fact that it is in the squash family but it is still just a fruit.  That’s ok.  It is a healthy thing I actually like.

Come fall I seek out pumpkin everything.  Do you know that Dunkin Donuts makes pumpkin coffee, pumpkin munchkins, and pumpkin donuts?  I don’t even like coffee but throw some pumpkin in it and it is yummy!


Recently I discovered that Dunkin’s also offers pumpkin cream cheese.  It is beyond describable in its deliciousness. Then I learned that you can buy pumpkin cream cheese in the grocery store and have it at home whenever you like!  I considered this but reasoned that the nutritional benefits of the pumpkin paled in relation to the calories in the cream cheese and thus, didn’t buy it.

The grocery store also had pumpkin ice cream but the container was huge and that was just a bizarre mix.  Pumpkin is a fall food and does not belong in combination with ice cream, a summer food for when it is super hot out.   Pumpkin belongs with hot things, like my beloved tea.

I learned from Facebook about Hersheys Pumpkin Spice Kisses but told they were hard to find.  I went on a quest to find them that took me two and one half hours away from home and employed the assistance of a friend.  We didn’t find them.


Truth be told, I was in the area anyway and didn’t make the long drive just for the kisses.   Lucky for me, two weeks before Halloween, they appeared in a local pharmacy and they were scrumptious.

I have heard that Pringles will be releasing Pumpkin Spice potato chips soon and if the Pringles factory were nearby, I’d be waiting at the door!  I wonder if the Cape Cod Potato Chip factory has any direct links to the Pringles factory?

Reese’s even makes chocolate peanut butter pumpkins but I must admit, I’m not sure how much real pumpkin is in them.


Please don’t think I have fallen off my ‘get fit’ plan, I am just trying to incorporate my favorite fall flavor into it.   I hadn’t used my Montel Williams Healthmaster Elite in a bit and thought maybe I should see if Montel had a recipe for a Pumpkin Smoothie in the recipe book.

He did not.  BUT, he did have a recipe for Pumpkin Yogurt Pancakes and Pumpkin Zucchini Muffins.  I was in!

First up, the pancakes.   I think they might have been super delicious except for the one fact I forgot- I totally stink at making pancakes.   Is that an MS thing?  If not, it should be because part of the problem was flipping the floppy things.   Usually I am a good flipper (see prior post- Flipnastics) but the problem is, I can’t flip on demand.  Plus it was hard to know when to flip.


The bottom line was that while I sampled the few bits of cooked pieces I came up with, and they tasted pretty good, mostly I had a mess of burnt cakes on the outside, raw pumpkin yogurt batter on the inside.

Next up were the Pumpkin Zucchini Muffins.  I was able to use many of the same ingredients so I only needed to go back to the store for zucchini which was puzzlinging as all I could find was something called green squash. I asked a healthy looking person in the store for help and she informed that green squash was the same as zucchini.  So why the two different names?  Is it just to confuse the already confused like me?


Whatever it is called, I brought it home and made the muffins and score- they were awesome and healthy!!!  They were easy to make and each muffin was filling and had a vegetable and a fruit in it!  I have got the healthy eating thing down friends!

Fall is here and everything pumpkin is good for you.   The world is a happy, smiley pumpkin face, place!


*Note #1   This year my local Dunkin Donuts is not carrying pumpkin cream cheese.   Thought I would warn you in case you don’t find it at your local Dunkin’s either.  Why do they take away something amazing?  I had no choice- I was forced to double my order of pumpkin munchkins.


*Note #2  Our guy Jack danced a sexy rhumba (yes, rhumba is a dance, not a vacuum cleaning robot,)  to make it to round 3 on DWTS!  His family was there to cheer him on although I am not sure Ozzy knew where he was.  Does Ozzy ever know where he is??  Don’t worry Ozzy, I can relate!


MS ironic comment of the night came from Head Judge Len Goodman, “you do weird things with your hands.”

Please keep voting.  Interestingly, I heard from cyberspace that some clueless person has actually challenged an MS’er with the expected “if Jack Osborne can do DWTS then you must be fine.”  The MS’er responded.  I don’t think I can legally print her response here but I say hey, at least they were talking about MS!

(Somewhere in between the bleeps and $%&&$#@@’s of course.)

Talking is awareness friends so let’s keep Jack in.  Turns out, the guy is not only one of us, but a pretty darn good dancer!

Vote for Jack and his partner Cheryl Burke by calling 1-800-868-3402 up to 60 minutes after the show on Monday nights or by logging onto ABC.com or Facebook.com/votedwts up to 24 hours after.





Too Many Steves

Multiple Sclerosis in the dating world


*****The names of the males in this blog post have been changed in order to protect my reputation****

I was talking to friends about the need to change some names while editing my book. I told them that one of the names I had to change was that of my most recent boyfriend, who was also one of the two loves of my life.

(Is it ok to have two loves of your life, maybe three? Especially if one was your very first love way back in high school and into your early twenties. There is that love of my life and the most recent guy and “one who got away” guy. That’s all. Just those three with some problem guys, no way guys, and “what on Earth was I thinking” guys in between.)


Anyway, let’s call this guy, the recent one, John. Since I haven’t talked to John in a while and so could not get his permission to use his real name in my book, I had to change it. I changed it to Steve, thinking Steve was a good name. I told my friends that I came up with the name Steve as I had always had a little crush on a guy named Steve Smith.

“But isn’t it weird to give John the same name of a guy you dated?” Serena asked.

“I didn’t date Steve Smith,” I replied. “I just had a crush on him.”

“No, not Steve Smith. But you dated Steve Jones. Remember Steve Jones???”

Serena was right. Not only had I dated Steve Jones but I had actually lived with him for a bit. My MS brain completely forgot about a total relationship. It wasn’t a terrible relationship either. It was actually a fun time in my life. How could I have forgotten all about Steve Jones?


This was very concerning. Memory loss with multiple sclerosis is very common. But forgetting an entire relationship was on a whole other level. MS has contributed to making my dating life pretty much non-existent. If it starts erasing memories of the social life I used to have, then what will I do???

Being single is one thing, but having always been single, especially if you weren’t? That is just way too much.

People ask why MS has affected my dating life. The simple answer is the fatigue. No matter what people say, dating takes work and work is exhausting. And since I am already pretty fatigued all the time, I feel like a zombie.


I’m not picky but I am not sure that it would be good idea to date someone who wants to date a zombie.

Who do zombies date anyway? Not vampires. Zombies don’t have much blood and what little blood they do have is filled with interferon and other meds. Not a good match for a vampire.

A werewolf? Do zombies date werewolves? That seems pretty hairy to me.


On and on the thinking goes and just like that, I am even more exhausted just thinking about dating.

But in case you think I am bailing on this dating thing too early, let me give you an example. I was invited to a social gathering, a party if you will. With my first glass of wine in hand I started talking to a guy as it turned out we had something in common. We talked about what we had in common. Then I realized we were talking!

I didn’t know this guy’s story. He was about my age but was he single? Nice?

I started to think too much. My legs started to hurt from standing there talking to the guy. I started to panic and with only two sips of wine, the panic was not subsiding. Should I continue to stand there and gulp down wine while I attempted to continue this conversation?


It seemed too much. Getting ready for the party had been tiring enough. What I really wanted was a nap. I couldn’t take the stress. And since stress is not good for MS, I ran away from the guy into the lawn chair in the middle of my safety net- ie, the people who had invited me to this shindig in the first place.

Fortunately, the chair happened to be right near the table holding all the wine.

Then I proceeded to beat myself up for running away and hence, just gawked at the guy during the whole rest of the event. That, of course, made him think I was a weirdo. I prefer the term zombie.

Fast forward several weeks and I get invited to another shindig. I find a table with friends and high chairs. I am mostly through my glass of wine when I realize that a guy I recognize from my party days happens to be standing directly behind me.

This was a somewhat fancy event and I was dressed up a bit and had actually put on some make up. Girly girl make up, not zombie cover up.


I was sitting, felt giddy with the wine and decided I would not repeat my mistake from the last social event. I re-introduced myself and the guy and I chatted for quite a while. He was there alone and I wasn’t panicking. I could do this chatting/flirting thing.

Someone called to him and he moved away. Eventually I moved away from the area as well and then it was time for my friends and me to leave. I didn’t talk to him again but felt confident that I had taken a step forward, moved out of my “destined to be single forever” shell.

Then I caught a glimpse of my reflection in the car rearview mirror and realized I had a bit of pesto from one of the appetizers stuck in my teeth. That made me re-analyze the whole pesto added conversation and I got tired all over again. I’m sure the wine didn’t help. I went home and, you guessed it, took a nap.

So you see, dating is very fatigue inducing and stressful to me and my MS. I don’t really mind being single as I have had a pretty fun and interesting social life in the past. Which is why I need to remember it and why forgetting Steve was very traumatic!

Luckily, I had Serena to remind me. That’s what friends are for.

At least until I find me a zombie.

I will name him Steve.

***I take this blog writing gig very seriously and always try to research what I am writing about. Turns out, there is a dating site for zombies! Who knew? If you know a single zombie looking for love please direct them to ZombieHarmony. Their tagline is “because the apocalypse doesn’t have to be lonely…”


***Further research shows that the site is no longer active. Guess all the zombies have been matched.  Damn.

***For observant readers interested in my future book, you read right. I am editing away. The goal is for the published (still unnamed) work to be released just after the New Year. If the apocalypse doesn’t get me first…




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

What do Multiple Sclerosis and Christmas Have in Common?

An MS’er gets ready for the holidays


I can just see you rolling your eyes as you read that line. You are thinking “ok, Yvonne has finally lost it for real. Christmas is a beautiful time of year filled with love, peace and joy. It has absolutely nothing to do with the dreaded illness of Multiple Sclerosis.”

I beg to differ however. Take for example, the lights. I used to love Christmas lights of all kinds, the more, the brighter, the merrier.  As I have aged I tend to prefer a simple theme in my light choices, say all white. Was this just because I am now more set in my ways? Am I just lacking in my imagination of lovely but erratic light patterns?

Who knows? But just two days ago I was driving through my hometown when I passed a house decked out five times as boldly as the Griswold’s home in the movie Christmas Vacation. Immediately my eyes began to blink, the dizziness settled like Santa on a rooftop, and my head started to swirl. Too many lights and MS both make my head spin. A brain explosion likely comes next.

Or, take the crowds. There was a time when I enjoyed the shopping. I would happily spend hours amid the other shopping folks looking for the perfect gift. New gift idea on the 23rd, no problem. Back to the mall I would easily go.

Why then in the last few years does the idea of holiday shopping make my whole body ache? The swirl in my brain begins again even thinking about it. Just the idea of the commotion brings the buzzing in whole body noise that does me in for days.

Thank goodness for online shopping even for major technophobes like me. So the shipping costs add almost 50% to the purchase price, at least I can pay them in peace and quiet.

Speaking of quiet, what about the bells? The bells used to be a lovely sonorous reminder of the joyful season. They would attract the goodwill of the masses. Now when I hear bells, I run, which is an amusing sight considering I am happy when I pull off basic walking. See me running and the laughs are yours. And I don’t run because I am too cheap to throw my change in the Salvation Army kettle but because each clang of the bell throws me off.  It jars my already jarred brain even more.

The lines for everything don’t help either. At this time of year it seems no matter what you are in line for, humans who never existed are all suddenly in the same line. Need stamps? All fifty people ahead of you are giving Santa a run for his money by mailing tons packages to children all over the world. Don’t they know that’s the big guy in red’s job?

Need a quart of milk? Every shopper in the world does too along with turkeys, ham, sweets, flour, produce, wrapping paper, tape, tinsel and whatever. The masses are coming for dinner- watch out.

Need gas? So does the entire planet. Christmas is coming, must have gas. I have noticed that standing brings on the body aches much quicker than simply walking. But if I walk even a foot away from the line, it triples.

So you see, the crowds, lines, lights, and to quote the Grinch, “the noise, noise, noise” of Christmas bring on many of the ill effects of MS. That is a sucky thing the holiday shares with the illness- the onslaught of symptoms.

The only way to minimize the symptoms in the season is to carve out your own special Christmas traditions. I decorate my tree (or actually asked friends to decorate my tree as the idea of carting the decorations up from the basement was just too overwhelming) with soft white lights that highlight the nativity scene in a calming way.

I shop online a little at a time while playing my own favorite carols at a low volume.

When I do venture to the stores I try to plan trips when I am feeling my best, and take the shopping one shop at a time. If I don’t finish in one trip, I go home, rest and try again another day.

If I hear bells then when I get to my car I turn off the radio and treasure what the sound of bells stands for in the quiet.

If my brain does get buzzing, my head gets swirling and my eyesight gets blurring, I stop, and try to think only about one thing, what is really at the heart of Christmas.

If you are Christian or even if you’re not, under all the commotion the heart of Christmas should be simple peace, love and joy.

So, this leads me to the one main thing Christmas and Multiple Sclerosis have in common. As crazy and overwhelming as they both can be, where it matters most, they are what you make of them.

Have a very Merry and Healthy Christmas!

Note to regular readers- you are not going crazy.  At least not right now!   The text of this post was originally published here last year.  But the sentiment is the same this year.  Plus, my time away made me too exhausted to create a new blog this week!   Check back next Friday for something new!

Image courtesy of [Idea go] / FreeDigitalPhotos.net

Image courtesy of [anankkml] / FreeDigitalPhotos.net

Image courtesy of [digitalart] / FreeDigitalPhotos.net

I Feel Icky

An MS inspired parody

What is with me and show tunes lately?   I don’t even really like show tunes yet I can’t seem to get them out of my head.

Just a few weeks ago I posted a blog based on the song A Few of My Favorite Things and now the song I Feel Pretty from West Side Story is lingering around.  This is especially weird as

1. I don’t even like that song and

2. I really, really don’t feel pretty at all.

On this family trip my get fit plan has gone right out the window.  And, as during the packing for this journey my suitcase was too filled with toys for the little ones to add any of my nicer clothes, I am schlepping around in my least pretty wardrobe possible.

Luckily, kids don’t really notice what you are wearing (except for the 21 month old who enjoys undoing and redoing the snaps on one of my sweaters, luckily a sweater I wear with a light shirt underneath.) And while family may notice what you wear, they aren’t really supposed to care.

So it doesn’t matter that I don’t feel so pretty.

So why is that stupidly annoying song hanging around my musical brain?  You would think the songs that would be lingering might be Rockin Robin or Riding on a Train, both songs that blast frequently from two of the kid’s toys.  But no, I Feel Pretty it is, over and over again…..

To help combat this frustrating ordeal, I thought if I actually sang the song, maybe it would go away.  But since I don’t feel so pretty, I may have to change the words to be in keeping with how I really feel.  So, on a day after one of my blasted shots, where the kids have prior a engagement and I am in a rented home with my mom who isn’t feeling well and my sister who insists on watching bad tv, here is my MS/vacation version of I Feel Pretty.

I feel achy, oh so achy

I feel achy and shaky and uptight

And I pity the person who bugs me tonight


I feel icky, oh so icky

It is sickly how icky I feel

And so icky that I can hardly believe it’s real


(Since the state we are visiting is on the west coast and it is hotter than it should be in December)

I feel sticky, oh so sticky

I feel sticky and sickly and tickly

It is a wonder if I will sleep tonight

(And since the state we are visiting is covered with cottons fields that we all seem to be allergic to)


I feel itchy, oh so itchy

It is witchy how itchy I am

A very itchy and bitchy ma’am

See the grouchy girl in that mirror there,

Who can that crab apple be?

Such an achy body,

Such tired eyes,

Such a lazy gait

In another state I must be.


I feel sleepy, oh so sleepy

So sleepy and weepy, it’s not right

And it isn’t even close to night!


(I actually did some research for my little song parody and it turns out, I don’t even have to change any words of Part 3 of the chorus for it to fit into my own little MS away from home song.)


It must be the heat,

Or some rare disease,

Or too much too eat,

Or maybe its fleas!


I feel icky, oh so icky

It is sickly how icky I feel

And so icky I can hardly believe it’s real!


Don’t worry friends, I just wrote this little ditty to do anything to get rid of this song.  If my version didn’t work, the effects of the shot are starting to let up, the MS MonSter (see my prior blog post MS/PMS MonSter Mash) is starting to head back into its cave, and the children have time on their dance card to hang tomorrow, which will be a straight shot of adrenaline and joy.

I don’t know that after chasing and playing and hanging with them that I will be feeling pretty tomorrow either.  But I will definitely feel less icky.


Best Medicine


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Too Lazy Even For Me

An MS’er looks at the new and improved

So I know that I mention (complain, whine, lament) here a lot about the extreme fatigue that comes with MS. But it is a fact and with this fact, comes the fact that many an MS’er has learned to take shortcuts to save energy. Most of these shortcuts involve skipping unnecessary tasks. Some MS’ers are pretty good at this. Me, I’m still learning.

Even though I skip watching TV commercials as much as possible (especially in an election year- so glad THAT’S over), I was drawn to a particular commercial recently. I think what caught my attention was that the commercial started by asking the question “how many buttons does your car have?”

I had never really thought about it. My car is a paint chipped 2005 Toyota Corolla that has served me well since I bought it pre-owned in 2004 (don’t ask.) With the exception of the incident where a tree fell on it during a freak winter storm (another don’t ask but now you have the root of the paint chip problem,) I have been very happy with it.

It has buttons but I have never counted how many. I just push them and go. The commercial was for a 2013 Cadillac XTS and the reason why the commercial was asking about buttons was because this new model of Cadillac has far less buttons than your average vehicle.

The car has sensors that tell the car’s control panel (essentially its dashboard) everything that is happening on the road around you. It has a Cue which means it can give you infinite listening features as well as unlimited access to all your contacts.

It can connect up to ten different Bluetooth devices and it has Natural Voice Recognition so that you don’t even have to lightly touch the control panel, you can just tell the car what you want it to do. You can buy this car and go from a few buttons that you have to manually push in your current car to this car where you don’t have to move at all!

Maybe it’s me, and keeping in mind that I am all about conserving my energy, but I can’t help thinking that if I am too tired to push a button, then I am probably too tired to be behind the wheel. Arms too achy to maneuver the steering wheel? Perhaps I don’t belong behind the steering wheel at that particular time!


Only a day after seeing that particular commercial, a friend sent me an email warning me about a problem with newly issued credit cards. All you shoppers out there, take note. It seems without you even requesting it, credit card companies are issuing new cards that have a teeny tiny wireless symbol on the back of them.

What this means for you is that you no longer have to stress yourself out with the tedious task of swiping your card thru the credit card machine when you purchase something. You can just pull your card out of your wallet and the WIFI signal will tell the credit card machine all your card info.

Thank goodness! After a long day of hitting the stores, that little swipe at the register completely does me in.

Again, maybe it’s me, but I am thinking that if I am too tired to be swiping my card for a whole two seconds when I buy something, maybe I shouldn’t be shopping. Let’s see- I’d really love the new Cadillac XTS but I am just too exhausted to swipe my card. Oh, I can just hold my card while I walk by the machine. Great- let’s do it, the Cadillac is all mine!

I received the email warning because, (surprise surprise,) thieves have learned how to use these new cards to steal from you. They just hold up a flat screen as you happen by a credit card machine and they are good to go.

On the days when my fatigue really sets in, if you don’t know me or my MS you could try to call me lazy. Try it all you want but I bet I will suddenly find some energy to belt you. But in my super long list of things that are exhausting, pushing a button and swiping a card don’t come up.

If they could make a gadget that automatically gives you a shower, puts on your clothes and make up, and styles your hair, I might be interested. How about a gadget that cooks dinner AND washes the dishes? Now you’re talking.

If I could recline on my sofa resting my very achy body and just tell a gadget to do the laundry, I might get excited. I am not too particular, I would even understand if I had to push a button to activate the thing. As long as I didn’t have to push the button more than once or push it too hard, I’m all for it.

Hey Salt-N-Pepa, the eighties are over, we don’t have to push it anymore. Unless we want too of course.

Friends if you enjoy my blogs and feel that they are helpful, please consider nominating me for a WEGO health activist award!   It is easy to do by following this link below and I would greatly, deeply, thrillingly appreciate it!




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Scary Brain, Scary Movie

Multiple Sclerosis is a Horror Show

It is the afternoon and I am shuffling around my house, trying to focus. I have my lists; all the MS helpful tip books suggest lists. There is the to-do-this-week list. There is the to-do-before-Christmas list and the things-I-should-try-to-do-in-general list.

There is, of course, the things-I-should-try-not-to-forget list. But the lists and lists were not helping me focus. Oh, I know, the dishes need to be done. I will feel better when I have finished that.

So I start with the dishes and realize I might have more motivation if I had music going. I dry my hands and head to the stereo. But then I see my computer and try to remember if I responded to that important email I received this morning. Yes, I see now that I did but there are some more emails to read.

I get overwhelmed with the amount of junk emails and chain emails coursing through my web account and give up, deciding to play FreeCell instead. What is up with us MS’er’s and FreeCell? Every MS’er I know is addicted to FreeCell.

My meds are giving me an awful taste in my mouth so I get up to brush my teeth and drink some water. I see that I barely started the dishes and dunk my hands in the soapy dishpan yet again. And three plates and five minutes later the 8ozs of H2O has gone right through me and I am off to the bathroom. How on earth am I supposed to drink eight more glasses today? I might as well move into my bathroom.

The fog in my brain continues. The only thing I can focus on is my lack of ability to focus. I am forever existing in this fog-like state. Perhaps because Halloween has just passed I think of the movie The Fog.  Figures. Leave it to me to equate my multiple sclerosis to a horror movie. But is The Fog the right horror movie?

I am wandering around lost in my own little world and not feeling quite right- almost zombie like. Yes, zombies, zombies are a good description. I am an MS zombie for sure. I will likely stay like this until I fall asleep where I will be alive but dead to the world for at least ten hours. Then it hits- it is not The Fog but Night of the Living Dead.


My zombie nephew

Somehow thinking of my MS in terms of horror movies brings me comfort as I try to remember what it is I was supposed to be doing. Night of the Living Dead, that is definitely the horror movie for sure.

Or is it? Sometimes I just want to scream. Actually, I just want to scream a lot. Maybe my MS really is Scream? I have always been a Neve Cambell fan. But does the movie Scream completely reflect all that my MS is to me?

It likely depends on what my MS is doing on any given day. Often, it makes me think I am going crazy. I think of the classic line in Psycho, “she just goes a little mad sometimes. We all go a little mad sometimes.”


My costume before MS

I remember all the hysterical mood swings and weird symptoms I experienced before I knew I had the disease. I remember hundreds of times of being convinced I was getting the flu due to the insane body aches, only to have them disappear, believing myself to be a hypochondriac.

I remember all the people in the world around me being totally off kilter but acting as though I was the one who was screwed up. Like when I had to go to my drycleaner’s several times in one week insisting that they had given me the wrong pants.

“Yes, they fit. Yes, they are the same color. Yes, they have the same fashion label and size label. But these pants have cuffs at the bottom hems. My pants don’t have cuffs. Yes, of course I would know if they were my pants or not. I will keep them as I need black work pants but one day soon someone is going to come in and say they have the wrong pants and I am telling you, I have theirs and they have mine. Feel free to call me when that happens and I will exchange them.”

My drycleaner and I had this little diatribe over and over. Funny how the other customer never realized she had the wrong pants. Yes, Psycho is the movie. That is the one that most describes my MS.

And it is appropriate and personal as when I was a teenager I had actually waited on Anthony Perkins at a candy store only ten days after seeing Psycho for the first time. My friend Heather worked at the store too and she was too freaked out to wait on him so it was left up to me. I gave him a whole extra ½ lb of penuche fudge so he wouldn’t bring out his knife and start swinging. Yes, Psycho felt right.

Bathroom again, but I stop to remove the pebble in my sock. But there is no pebble. What is that annoying feeling? And that one, the sudden sharp, jab in my left arm? And that one, the squeezing and releasing of my abdomen as if my stomach were in a vise?

And here are those weird ear noises again- has my body been taken over by aliens? That’s it, Invasion of the Body Snatchers. That is definitely the horror movie that best describes my MS. It all makes sense now- aliens have taken over and turned me into a screaming, psychotic zombie living in a deep fog.

Finally, having this serious question answered and finishing up likely my tenth trip to the bathroom, I try again to remember what I was supposed to be doing. Oh right, the dishes.

I shuffle back and plunge my hands into the now cold water. As I do so I feel awkward and completely out of sorts. I am tired and clumsy and blinking from the glare of the setting sun. Funny how images of The Creature from the Black Lagoon begin to cloud my foggy, psychotic brain.

If your MS was a horror movie which horror movie would it be???????

Image courtesy of / FreeDigitalPhotos.net

Image courtesy of / FreeDigitalPhotos.net

Multiple Sclerosis in Margaritaville


Recently, a friend who visits Florida twice a year, every year, gave me a gift. It was a glass from Jimmy Buffet’s Margaritaville Café and it had taken her a lot of alcoholic, frozen drinks to accumulate enough glasses to pass around to her friends.

In the last days of August, as the humidity had lessoned, the gift made me appreciate the fact that I shouldn’t be a total summer scrooge. I was still waiting with deep excitement for my favorite season, autumn, which I have decided will start on 9/4/12 this year.

I don’t care that my calendar claims the official first day of fall is 9/22- what does my calendar know? Fall will start next week- I demand it!

Translating all of the above into my healthy eating plan, I decided to finish up the last days of summer by making Montel William’s Tropical Smoothie. The first step in that plan, of course, is a visit to the grocery store where I actually found the coconut milk required for the smoothie.

Did you know there is a whole aisle in the grocery store that sells only super healthy stuff? I had never ventured down that aisle before as it looked too weird and scary. But I braved it this trip and that is where I found the coconut milk. Good thing too, as if I didn’t find the coconut milk there I planned to head to the liquor store for coconut rum instead.

It took me forever and major determination to find frozen vanilla yogurt. I am not opposed to frozen yogurt but most of the varieties I found weren’t plain vanilla. There was Ben and Jerry’s New Greek Vanilla Frozen Yogurt with graham crackers and blueberries, (blueberries are healthy aren’t they?) and all kinds of other types of frozen yogurts with delicious add ins- cookies, chocolate, caramel, fruit and nuts (yuck on the nuts.)

Eventually I found plain vanilla, and ignored the more tempting varieties. As fall would start in a few days (per me), and Tuesday I would wake up to a chill in the air and automatically need a sweater, I also purchased the ingredients for Montel William’s Potato and Leek Soup. At least I think I did.

I have had leeks before in restaurant versions of this same soup filled with gooey cheese but I am not sure what leeks look like before they go into the soup. I didn’t see a sign anywhere and so I asked a store employee who looked about 12 where the leeks were. She had no idea and asked another employee who looked about 16. He pointed to these palm tree looking things with grubby roots and I put them in my cart. I hope they are actually leeks and I am not the butt of some cosmic produce aisle end of summer prank.

Anyway, the next day I made Montel’s Tropical Smoothie and enjoyed it immensely. I drank it in my Margaritaville glass to truly honor the end of the summer season.

I thought I should drink the smoothie at the beach while I looked for sharks (there had been a lot of great whites in local waters lately), but I didn’t know how to safely transport my smoothie in my Margaritaville glass. And frankly, I was kind of tired and not really into going anywhere.

A pool would be nice. I wished there was a pool in my yard to lounge by while I drank my Tropical Smoothie and bade goodbye to summer.

I decided to celebrate in my own MS kind of way. I grabbed a beach-read kind of book, put in a Buffet cd (fins to the left, fins to the right), and lounged on my sofa in front of a fan while I drank my Tropical Smoothie.

Ahhh, paradise……


Remember to submit your recipes for the 50 Shades of Green/Doing It Veggie Style Contest by midnight tomorrow, 8/31/12!

Image: FreeDigitalPhotos.net

Image: FreeDigitalPhotos.net

Unproductive Produce

Multiple Sclerosis and the Grocery Store

I hope anyone following my blog hasn’t given up on me and my ‘get fit’ plan that uses my Wii Fit and Montel William’s Healthmaster Elite. During late July/early August there were a few gorgeous, almost autumn like days where I was super productive on the plan. My Wii Fit and I bonded again and I actually achieved one of the fitness goals we had set, (a miracle close to the whole water into wine magnitude-it is amazing how much regular maintenance can heal a strained relationship).

And I made two more of Montel’s smoothies. Montel’s Green Fruit Smoothie was super healthy and pretty good. I wish I could call it delicious but citrus fans will likely think it so. And I made the Strawberry Banana Smoothie which was super yummy and hands down my favorite thus far!

Then the heat and humidity came back with a vengeance and I was done. No one likes the humidity and you will often hear people say “Oh, I don’t like it either-this weather is so uncomfortable.”

I have been told that while it is important to me to keep my blogs light and humorous (ie, no whinnying unless it is done for comedic sake,) it is also important to share with others what living with MS is like. So for educational purposes, please allow me to describe how humidity plus multiple sclerosis translate into miserable days and why the ‘get fit’ plan falters during those days.

Humidity for people living with MS is not simply ‘uncomfortable’. It is a severe ramp up of all your worst symptoms, specifically turning your body aches into pain, your fatigue into a state of comatoseness (so what if that is not a real word, this is my blog so I can get away with it), and your brain fog into a state of no brain at all. It hurts to even think.

After several days of this where Fido and I were hunkering down (Fido is the name of my portable air conditioner- see my post on MSRelief.com for more info  http://multiplesclerosis-relief.com/2012/07/27/petless/ ), one morning we awoke to the news that that day’s temperature would drop to 86 degrees and the humidity would fall from 96% to 91%. What a relief!

My legs needed to move for more distance than just from my bedroom to my bathroom, I had no food in the house of any kind and only a little bit of bottled water left. It was time to hit the grocery store.

Being responsible and on a budget, I ventured out of my room for a pen, paper and my coupon file. I made a list including the coupons that would help me save. Feeling confident, I ran (which for people with MS on a humid day translates to shuffling at a slow to medium gait) from my ac bedroom to my ac car, expecting to arrive at an ac grocery store.

The store was ac controlled alright- controlled to such a low state you could barely feel it. Why is it that in May, when the temperature reaches 72 degrees for the first time, the powers that rule blast the ac into an Arctic frenzy, but in August when the temperature is over 85 degrees they suddenly worry about the electric bill and lower the ac to barely noticeable proportions?

Still, I had some energy and there was a great necessity for groceries so I proceeded to shop. In the produce section, I picked up many items including a super duper bag of kale I had come to appreciate as an easy way to get some good greens into my system. As I continued to shop, the heat and walking started causing my legs to throb considerably. I moved as fast as I could to finish and forgot to even check the list I had painstakingly created. It wasn’t that I couldn’t be bothered to check the list, it was that I simply forgot it was there even as I repeatedly moved it from my right to my left hand as I grabbed likely random items.

At the check out, I waited in the long line behind a woman whose ATM card refused to work- the heat must have gotten to it too. I tried to ignore my legs which were now in pain. I considered lying across my filled cart to rest when it was time to start unloading the groceries. When the clerk tried to ring up the kale, she noticed that the bag was ripped open and pieces of kale were now falling all over her conveyor belt.

How did THAT happen? I hadn’t noticed it when I put the bag in my cart. Did a bag of cookies on an end cap I passed reach out and slash the bag out of jealousy that kale was being purchased and they were not?

Obviously, she couldn’t sell me that bag; did I want someone to get me another? I told her that I did, I was trying to eat healthier. She hit her “need help” light and continued to ring up my purchases. No one came to help. My brain fog had a foggy idea.

“How about you charge me for it and trust me to grab another bag on my way out?”

She thought that was a brilliant idea. Did she have brain fog too? Groceries paid for and bagged, I left the counter to head to produce to pick up another bag of kale. That is when I realized that the produce section was in the opposite direction from the entrance where I parked. I refused to cry. I will pick up the kale and just be on my way.

At the kale section I saw that there were only three bags left and all of them had use by dates of that same day! I am trying to get healthier but eating a whole bag of kale in one day was just too much for even the healthiest of us. I also needed to save money and so I had no choice but to head to another line, customer service, to get a kale refund.

This line was the biggest and slowest moving I had ever seen. Now no longer simply hurting, my legs seemed to be unmovable blocks of cement. I again thought about lying across my cart of bagged items. I thought about why I still hadn’t purchased one of those canes that can easily turn into a seat if you need to sit. (The reason why I hadn’t thought to buy one was because the only time my foggy brain thought of it was when I needed it.)


Between the Western Union requests, returns and lottery, the line seemed not to move at all. The kale had only cost $2.99, why didn’t I just leave without the refund? My foggy brain never thought about that. Instead, it came up with the idea to abandon my groceries (almost $100 worth) right there and get the hell out of the store.

I was about to do just that when the line moved and it was my turn. The clerk asked if I had a penny. The daggers my eyes were throwing told her I did not. I took a brief bit of pleasure that I was 1 cent richer after this experience.

In my car, with the ac blasting, I realized I never even used my $10 worth of coupons I had so carefully collected when I compiled my list. So be it- I was down $10 but up 1 penny.

At home, it was all I could do to put my refrigerated items away. The rest of the groceries sat scattered around the backseat of my car or just inside my front door. The good news from this saga is that as I was trying to get healthy I hadn’t purchased any ice cream or chocolate or anything else delicious that could easily melt in the heat and long lines.

AND, as the produce aisle was the first stop on my grocery store journey when I still had a brain and some energy, I HAD remembered to buy the ingredients for Montel William’s Broccoli Soup recipe. I even bought actual broccoli and will make this soup. But not that day.

Exhausted and hungry I was grateful that I bought some healthy cereal and took a box of it into my bedroom for my lunch/dinner (I had no idea what time it was, only that I was hungry.) But I didn’t grab any milk. My arms and hands were hurting too much from the excursion to pour milk into the box. Ooops, my foggy brain meant bowl. If I used milk, I would need a bowl and a spoon and it just seemed too involved a process…….


NOTE- I am progressing on my plan and have received some great veggie recipes to help. But I still need more. There are only two weeks left to enter my 50 Shades of Green/Doing It Veggie Style Contest. See the details in the 50 Shades of Green Blog entry.

Image: FreeDigitalPhotos.net

Image: FreeDigitalPhotos.net