Tag Archives: national ms awareness month

MS Moments Not So Magical

What a multiple sclerosis moment REALLY looks like

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This magic moment,

So different and so new

These are the opening lines of a sappy sweet song by the Drifters that is actually about a couple falling in love.  Yet the song is stuck in my head as I am analyzing and over analyzing other “moments” in my life.  The opening lines fit with the undesirable moments I am talking about; moments that have nothing to do with the rest of the song which is really about, well, desire.

I think the MS community might have stolen the term “MS Moment” from another community, namely, the elderly.  It seems to me that before MS ever really entered my consciousness in any serious way, I heard a lot about “senior moments.”

Actually, just before I was diagnosed myself, I was having a ton of “senior moments” which was scary as I was only in my thirties.  And I wasn’t drinking anywhere near as much as I used to.

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Turns out my senior moments were actually bouts of cognitive deficiencies that as I talked to other people with MS, became MS moments.  As I go about my life looking to be cheered up by a giggle or two, I can actually find some of these moments amusing.

There was the time that I tried to reheat my large mug of tea in the microwave only to have the mug not fit.  I struggled and struggled and grew confused as this was something I did all the time.  There was no reason for the mug not to fit.

Minutes of drinking lukewarm tea later, I realized that the problem was that the “microwave” I was trying to put the mug into was actually the toaster oven.  How does this happen?  They aren’t even near each other on the counter.

Or there was time I got all dolled up and was so pleased that my hair was cooperating that I sprayed it with hairspray to keep it that way.  But as I suddenly started to gag my hair moved and I realized the problem was that my “hairspray” was actually body mist.

And no, it doesn’t hold your hair in place and what they say is true- too much of a good thing is actually quite smelly.

And sure, I’ve forgotten to take the cap off my water bottle before refilling it and I’ve put pepper on my yogurt when I really wanted cinnamon. But these are things that in retrospect I actually find funny.

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But then there are the MS moments that can be expensive.  Too often I buy something I don’t need while forgetting the thing I do need, or buy something and then forget I have it even as I am looking at it and then have to throw it away when it gets way past its expiration date.

I’m pretty frugal and so I make a habit out of looking for coupons, cutting coupons, bringing coupons to the grocery store and even taking the coupons out of my purse.  Only to forget to give the coupons to the cashier, realizing this as I put said groceries away back at home.  Being on a budget makes these MS moments costly but since I’m not dealing with super pricey items, I can often laugh them off too.

It gets harder to giggle though when the moments become frustrating.  I like ice hockey and recently read a great article about a Boston Bruins icon, the player who has his own statue outside of the Boston Garden featuring him flying through the air to make a goal.  Only a couple of days after reading the article I had forgotten this famous player’s name.

Everyone knows this guy’s name.  You can’t say you are from New England if you don’t know this name and I had just read his name over and over.  I had to admit my cluelessness and ask a friend who gently reminded me that the name I was looking for was Booby Orr.

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But I’m sure I didn’t have to tell you hockey fans that.

This multiple sclerosis moment was frustrating in a recreational way.  But it can get more serious when I do things such as search over and over on important paperwork for a crucial deadline only to not see the deadline and turn the paperwork in late.   Or, when I check and recheck the paperwork only to submit it and find out I did half of it wrong even though I checked it, rested, checked it again and checked before turning it in.

Then there was the time I forgot how to spell my own name.

It probably doesn’t help that my last name is a little unusual with the first two letters of it being lower case and then a capital letter three letters in.   What makes it even more baffling is that my cousins don’t spell it this way.  They capitalize the first letter and then the third.

(Thanks dad and Ellis Island for making even our last name confusing.)

Two years after it had been up I was looking at my website and realized that my name was spelled wrong.  How could my web guru have made such a mistake?

I fumed.  I furied.  I frustrated and decided I needed to rest.   I came back to the website and grew even more angry when I saw the misspelling once again.  Yvonne deSousa.

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It was later in the day, just as I was about to send off an email requesting an immediate correction when I realized that my guru had spelled my name on my website exactly as I spell it.  He hadn’t messed it up at all, I had just forgotten how to spell my own name!

(Slight plug for my web guy as he really is awesome and I’m embarrassed about the above issue still.  If you are looking for web help, you can find more about his expertise here-Kemp Resources.)

Many people will say “we’re all spacey” or “I do that all the time..”

But with MS moments the problem is that we aren’t able to check our mistakes because even when we check and re-check them we don’t see the mistake.  It’s like our brain doesn’t accept the mistake as a mistake once we make it.

I don’t know if this also happens with senior moments as what I always thought  were senior moments were actually ms moments and so now I don’t know what to think.

Then there are MS moments that are just not funny at all.

Recently I was taking a shower and being the good conservationist I at least attempt to be, I shut the water off while I soaped up.  When it was time to rinse the soap off, I could not, for the life of me, remember how to turn the water back on.

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This wasn’t a quick lapse of memory.  It took me a while to figure out what to do and how to get the water back.

Who can measure shower time? This didn’t last hours or even minutes but it sure felt like it.  It did last long enough for me to begin to panic. After a while, I remembered how to use my faucet and resumed my shower.

This incident was very scary.  Downright terrifying even.

When people ask why MS fatigue is so bad I tell them it is because it makes these issues worse and these issues can be frightening when you think about them in the long haul.  And that is the crux of MS.

As we close MS Awareness Month it is important to remind others what some of the scary moments of multiple sclerosis looks like.  Because at its core it is a terrifying illness that needs research, awareness and a cure.  Like right away.  Like now!

True, I spend my days open to the amusing moments because that is how I survive, no thrive, in the face of the horrible symptoms and unknown future.  I believe life is too short and when you can find a smile, treasure it.

But it’s never lost on me that those smiles don’t take away from the debilitating nature of MS.

Sometimes though, they just might help you power through them….

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Friends, do you want to do your part to help find a cure for multiple sclerosis?  If so, check out iConquerMS and consider joining with others for are working together for a cure!  Signing up is free and easy, even for someone like me!

Post blog note-  

  Friends,  I unintentionally proved my point within this post. A reader commented that I spelled the hockey great’s name as Booby-yikes!!! I didn’t mean to do that and edited and checked and rechecked this blog several times before posting. See what I mean about MS and the cognitive issues? For the record, his name is Bobby Orr! And yes, I do find this MS moment amusing. I don’t know if Mr. Orr would however…

Focus image courtesy of Master Isolated images at FreeDigitalPhotos.net

Drunk woman image courtesy of Saphatthachat at FreeDigitalPhotos.net

Piggy bank image courtesy of bplanet at FreeDigitalPhotos.net

Don’t forget image courtesy of Stuart Miles at FreeDigitalPhotos.net

Shower image courtesy of winnond at FreeDigitalPhotos,net

Smiley image courtesy of Stuart Miles at FreeDigitalPhotos.net

 

Super Blah!

A multiple sclerosis alter ego

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Spiderman had the Green Goblin.  Batman had the Joker.   Is it possible to have a super hero without also having a super villain?

This thought occurred to me recently when I was reading an awesome MS blog by an awesome MS blogger, Melissa Cook.  She blogs about life with MS on MSsymptoms.me

In the particular post I was reading she explained a multiple sclerosis phenomenon that I could totally relate to.  Her post is titled Super Powers to the Rescue and it describes how in times of crisis or intense stress, we seem to discover amazing energy sources and strength we never knew we had.  Activities that would normally do us MS’ers in, we seem to ace just when we should be feeling our worst

Personal case in point, just last week I left town for a few days to say goodbye to a beloved uncle, my family’s patriarch.

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(Speaking of super powers, this loving man never missed one day of work in his entire life and was married for 60 years- that is some super strength right there.)

Amid the funeral arrangements, grief, worry and drama that can happen during a difficult time, I did ok.  Miraculously ok since I had forgotten to pack my energy inducing pharmaceuticals.  Suddenly I was able to stand for longer periods than I normally would be able to.  I was operating on far less rest than I usually would get.  I remembered things I would normally forget and understood things I normally wouldn’t understand.

I saw many friends and relatives I don’t see often and they remarked on how well I seemed to be holding up.  But what they didn’t see was the debilitating crash that came after, the days I spent in a major fatigue induced emotional hangover.  In the aftermath everything that could possibly ache ached and everything that I could possibly forget was forgotten.

Thankfully I had read Melissa’s blog and so somewhere in the cognitively limited resources of my brain, I had an inkling of what was going on with me.

Ah, MS, it taketh away.

It taketh away a lot.

But sometimes, when you need it most, it giveth too. Sometimes it can giveth the super powers you are desperately needing when you might desperately need them.

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This understanding made me think of super heroes which made me think of villains.  I decided we needed a name for the villain that shows up in the aftermath of these super powers.  The evil arch-nemesis that does everything it can to rob us of our personal super powers.

Hence, I created Super Blah!

This is the alter ego we unwittingly transform into when MS decides to decimate the super powers it recently bestowed.

Super Blah!’s chief crime is theft- theft of energy, theft of thought, theft of concentration, theft of all the things one needs to function in the aftermath of a super power moment.  In addition to theft, Super Blah! is also responsible for pain, and an increase of all of your worst MS symptoms-for me that meant that my balance and bladder became as obnoxious as ever.

You can’t hide from Super Blah!–  though you can anticipate its arrival.  You will likely see Super Blah! right after you have surprised yourself by feeling good.

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I think the best example of how Super Blah! shows up lies in comparing him to the Incredible Hulk.  One minute Dr. Banner was just doing his own thing and then he would get mad and suddenly he turned into the Hulk.  The difference is that the Hulk was good.  His enemy was Mr. McGee.

“Mr. McGee, don’t make me angry.  You wouldn’t like me when I’m angry.”

Understanding the role of Super Blah! in my life is quite disturbing.  How do I stop this wicked villain in its tracks? I’m not Wonder Woman.  When my super powers are at their best I’m barely Mighty Mouse.

I often do extensive research for both my health and my blog and so I began to investigate what might actually destroy Super Blahs!’s evil powers.  I discovered that I may need super tools. Wonder Woman uses her lasso.  Maybe I could use my drugs?

I learned that my MS medications are somewhat helpful but to combat Super Blah! I needed something bigger, something greater than multiple sclerosis itself, the source of Super Blah!’s power.

Then my research led me to discover something I had never heard before. It turns out that Superman recharges his power with solar energy.  When he’s feeling run down, in need of a super boost, Superman turns to the sun.  With a high dose of the sun’s powerful, Vitamin D filled rays, Superman is back on track!

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Wouldn’t you know it, one of my drugs is super strong Vitamin D!

So I’m going to take a lesson from some of my favorite super heroes and get my strength back.  I will defeat Super Blah!

Maybe not today, maybe not this week.  But I will get him eventually.

Turns out I’m really not Wonder Woman or Mighty Mouse.

I am Superman…

PS If this particular blog post seems super blah it is because Super Blah! was hanging around when I was writing it- blame him! Or her. Or whatever Super Blah! is…

In honor of National MS Awareness Month let’s share some Super Blah! info readers.

What does Super Blah! look like in your MS world??

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Images of Batman and Spiderman in their younger years courtesy of their mom, Kady Green

Image of my uncle’s hardworking hands courtesy of Kristine Soares Photography

Flying super hero image courtesy of vectorolie at FreeDigitalPhotos.net

Good/Evil sign image courtesy of Stuart Miles at FreeDigitalPhotos.net

Sun super hero image courtesy of iospere at FreeDigitalPhotos.net

 

Things That Go Ouch In The Night

MS weirdness, MS dancing, MS news and a favor

 

If you are like me, then you are used to unexplainable MS aches, pains, and strains. There are so many that I have stopped trying to count. And I have definitely stopped trying to figure out what causes them.

I just take one (or two,) Aleve tablets (my personal favorite of the over the counter meds,) and try to move on, perhaps whinnying or complaining if I also happen to be super grouchy that day. (Please see my prior post about mood swings titled, Call Me Oscar.)

And, so you don’t worry, I will tell you that I do know relying on Aleve is bad for your tummy; hence why I have prescription heartburn medicine that I take along with it. (Why isn’t it called tummyburn?)

 

That’s the way MS rolls; one drug takes care of one symptom but causes another, and so you take another drug to combat that symptom and so on and so on and so on…

But back to the aches, pains, and strains. I am more fortunate than some of my other MS friends in that the pain MS throws at me isn’t too terribly horrible. But because it is MS, it insists on being weird.

 

Just so my brain doesn’t get too complacent, multiple sclerosis decided to toss something new in the mix, just to shake things up. For the last several nights, when I wake up for one of my many, many middle of the night trips to the bathroom, I awake filled with all kinds of aches, pains, and strains. Stabbing sensations in my legs, throbbing feet, headache, sore throat, brutal ear aches- in both ears no less- or any combination thereof.

I tell myself that this is not MS. I must be coming down with something (virus, cold, fever, infection, malaise, etc.) and in the morning I will make an appointment to see my doctor. And, also luckily for me, MS fatigue overtakes MS weirdness and I fall back to sleep.

 

When I wake up in the morning, I (of course,) run to the bathroom again. I take my thyroid pill, (a whole separate diagnosis, a whole separate drug issue,) and since I can’t eat or drink for 30 minutes afterwards, I go back to bed. In that time the aches, pains, and strains seem to go away. I become convinced I dreamt the whole body of issues. Too often the headaches stick around and I will take my Aleve, but otherwise, the virus seems to be gone.

This has been going on for several days. I’m a pretty intense dreamer- am I dreaming the whole thing? Does the dream me have an ear infection or strep throat but the awake me is healthy?

Is it a mix- are some of the symptoms MS related and the others viral? But I am on an anti-viral medication (for fatigue-figure THAT one out,) so how does that work? Do my meds run out in the middle of the night and that is why everything comes at me then? If so, how come this just started recently when I have been on all of this same stuff for years?

 

Since it happens at night, and night is when the monsters come out, is this just a medical monster mash designed to help me get ready for Halloween?

You might suggest I visit a doctor to discuss this but how can I go see a doctor when by morning I don’t have any symptoms for him to look at? Am I going crazy? How else can I explain this latest weirdness?

Oh wait, that answer I’ve got. If it’s medical and it’s weird, it must be multiple sclerosis….

 

On to DWTS– what an incredibly beautiful and emotional night it was. I have been a fan long before Jack Osbourne joined the cast and I think this night of the stars recounting their most memorable years was the best ever. But Jack discussing his MS diagnosis only 2 and a half weeks after his daughter was born was beyond touching. His raw emotions as a father combined with his fears for his future health brought the ballroom to tears. He then danced a flawless waltz.

I was so moved I almost forgot to vote. Luckily, I came to my senses and managed to get my votes in!

 

Memorable MS quotes of the evening-

“If you don’t have bad, then you can’t appreciate the good,” Jack.

“Your hand sort of goes in a peculiar way,” Len.

“You even managed to get your bum under control,” Bruno.

Vote for Jack Osbourne 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.

Now for the big news, followed by a big favor! It’s official, the title for my upcoming book is-

MS Madness!

A Giggle More, Cry Less Story of Multiple Sclerosis

It is scheduled to be released in February 2014, just in time for National Multiple Sclerosis Awareness Month! I can’t wait to share with all of you the story of the several months before my diagnosis and the year that followed, a story told with honesty, frustration, inspiration and, of course, my own unusual sense of humor.

If you haven’t done so already, please consider liking my professional page on Facebook, Yvonne deSousa.com where I will regularly post status on the release date, preorder information, book signings and a contest!

Thank you all for your amazing support!