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If you have Trouble with too much Sleep, you might have MS

A multiple sclerosis nightmare on my streetID-100436842

This blog post is dedicated to my chronic illness friends who have trouble sleeping. I feel ya.  I have trouble with sleep too but my trouble is a little different….

I love sleep.

I love my bed as it is super comfy for sleep.

And after I pee 10-12 times I sleep pretty well.  It’s quite coincidental actually, as I usually get about 10-12 hours of sleep.  One hour for each time I was forced out of bed and into the bathroom “one last time…”

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This isn’t a new thing as sleep and I have always gotten along- too much really.  I’ve never been known to sleep walk. And the jury is out on if I snore, depending on whom you ask.

But I have a pretty active sleep life.  Despite the lack of sleep walking one time several years ago I woke up, brushed my teeth, and took a shower.  When I went into my bedroom to get dressed I realized it was only 3AM.

Another time, a fingernail on my left hand scratched the letter Y onto my right hand.  I noticed when I woke up.  I kid you not, the letter Y, first letter of my first name.  It was as if part of my sleeping body wanted to remind the other part of my identity.

And then there are the dreams.

They are super intense, almost like a movie.  In fact, one night I dreamed I was watching a movie and in the dream about watching a movie was an actual movie!  If I wasn’t so tired when I woke up I should have written out the movie’s screenplay. Maybe if I had, I would be too busy hanging with Bradley Cooper and Matthew McConaughey to have time to write this blog.

BUT, I digress.  (I have MS-it’s what I do.  My whole life has become a digession.)

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Anyway, enter multiple sclerosis into my active dream life.  I once asked my first neurologist if very intense dreams could be part of the reason for my very intense fatigue.  She said no, because if I’m dreaming, I’m in very restful REM sleep.

Really?  It doesn’t feel so restful when I’m scarring identity marks onto my body.

(Note- This was the same neurologist who told me if I was having trouble describing my cognitive issues I must not have any.)

After a pretty crazy and sometimes overwhelming month I recently gave myself several days of rest.  I took it easy and tried to catch my brain and body up on life.  I did use the time to restart an exercise routine I hope to (FINALLY) keep up with.ID-100361589

Four nights after this self-imposed relaxation exile, I woke up feeling pretty good.  Except for my upper left arm which felt like it had been punched, hard.

I was alone and there was no obvious evidence that someone had broken in and beaten me up.  Did my right arm do that?

There wasn’t any bruising but it hurt.  It would make total MS sense if I had done a shot in that area in the last couple of days.  I hadn’t. I had done butt shots but my butt felt fine.

I chalked this up to more MS weirdness and mostly just found it fascinating.

Until the next night when my dreams were out of control.

There was the first dream which is a regular one.  I’m at my old job and working part-time to help them get organized and before I know it I’m running the whole show, months have gone by and my old boss refuses to pay me.

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Typical dream stuff.

But the second dream involved my needing to go to my hometown 30 miles away and choosing to bike there as a means of transportation.  I make it about 20 miles and then start to cry.  Someone in my dream gives me a ride and then when I have to come back I decide to bike again.  But after ten miles I’m crying and luckily find a bus to give me a ride.

The reason why this was so weird is anyone who knows me knows that I’ve never been much of a bike rider.  If I had to get somewhere 30 miles away I would do better walking there than biking.

Not hiding tooth

Not hiding tooth

I think it comes from the trauma of a bike accident when I was ten that caused me to chip my newly developed bucked tooth, creating a super goofy smile that lasted well past my braces.  Any type of fix dentists did wouldn’t last and the image did nothing to help my general preteen nerdiness.

Hiding tooth

Hiding tooth

Or perhaps, my lack of bike skills come from my lack of balance issues which might be early traces of MS?  Except neuro #1 also said my clumsiness had nothing to do with MS even as I was accidentally walking into a wall during my balance test.

Anyway, the morning after my bike dream I woke up hurting all over as if I really had tried to bike 60 miles in one day!

How does THAT happen?

My thighs hurt.

My butt hurt.

My feet hurt.

My arms hurt.

Even my hands hurt.

Everything hurt as if I had gone on an extensive bike trip.

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I have memory issues too and couldn’t remember everything I had done the day before but I’m pretty sure pedaling away wasn’t part of it.

I don’t even have a bike.  There is a cute girl’s bike with a kid’s helmet in the community storage area of my building. Did I take that out for a spin and forget?  But I checked.  The flowery pink bike still had the same dust on it it’s had since I moved in.

So what’s going on?  Has my brain and my sleeping brain decided to conspire to make me crazy?

Has my imagination gone off the walls to make my body crazy?

Am I actually crazy?

Oh wait, I have multiple sclerosis.

Of course I’m crazy!!!

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Just another Weird, Weird Day

“My MS is not your MS and your MS is weird.”

Brilliant, semi-famous quote written by me

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Your MS is weird.  And sometimes, I suppose, mine is too.  Life with MS is certainly weird.  And then there are weird people and weird circumstances.  Recently, all this weirdness converged on what should have been a relatively normal, unweird day.

I dropped my mom off for a doctor’s appointment and then left to run an errand.  When I returned to the office and she wasn’t ready I made myself comfortable with an engrossing book. As I sat my throat grew dry and I noticed a water cooler in the corner of the waiting room. I kept meaning to drink some but just couldn’t leave my compelling read.  After this sentence, no, after this paragraph, definitely after this chapter, I will get up and get some water.ID-10056064

But my mom poked her head into the room and nodded at me, which caused the nurse behind her to motion me to follow them.

This was concerning. My mom is very private and hates medical stuff.  If I was needed in her appointment it could be a bad sign.  Turns out, it was simple miscommunication.  Her wave was meant to tell me that she wasn’t quite done but the nurse took it as an invite and insisted I join them.

“Well, you’re here now so you might as well stay,” my mom said.

I sat in a chair opposite the doctor’s desk and my mom sat on the table.  The doctor entered and my mom introduced us. I was surprised by his strong Greek accent as my mother had never mentioned it before.  I could barely understand him but it didn’t matter- it wasn’t my appointment.

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Since I was stuck there I thought I would listen even if I only understood one out of twenty words he said.  I managed to grasp that he was talking about sodium; ie salt, ie the stuff that makes fast food taste good.  He wanted my mom to cut down on sodium.  He wanted this so much that he kept talking about it, a lot.

At least I think that’s what he was talking about.

But he seemed to address most of his talking to me.  So what if I happened to be munching on potato chips- again, it wasn’t my appointment.

(Kidding.  I wasn’t munching on anything but was completely regretting not grabbing that water when I had the chance.)

He told my mom he had something for us.  He left and came back holding a loaf of bread.  He manipulated the plastic bag the bread came in so that a slice was near the opening and he insisted I take it and split it with my mom.  It was an order and I guess the reasoning was to suggest we now eat this particular brand of low sodium bread.ID-100151613

I gave my mom half the slice but didn’t know what to do with my half.  I nibbled on it because that’s what the doctor seemed to want but it was like sawdust in my mouth.  I was trying not to choke.

There was a trash bin in his office but throwing my half away seemed rude.  Without salt it didn’t seem very crumbly. Should I scrunch it up and shove it into my pocketbook?

The whole thing seemed odd.  I’d never had a doctor, even one of my own, offer me a snack before.   I thought of how when I go to church and my priest offers me bread he’s polite enough to also offer some wine to accompany it.  Could I ask this doctor for wine?  What’s the sodium level in wine?

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He then said that we should only get 150 mg of sodium a day.  While he was stating this he was also pointing to a chart that recommended 1500 mg a day.  I was more confused than ever and was now super afraid of salt and hoped he knew the Heimlich as I tried desperately to finish my half slice of bread.   This seemed like major medical weirdness to me.

Outside his office, it was past lunchtime and despite the snack my mom and I were both hungry.  But I couldn’t think of a single place to go for lunch that wasn’t a salt trap designed to suck us in.  My mom suggested a place and I agreed to go there but was firm.

“Mom, we can go there but I’m going to tell the waitress that we don’t need menus as we will have water and plain lettuce for lunch, no dressing.”ID-100182547

“Good for you,” she said.  “I’m getting a menu.”

I stopped in front of the placard that said “Please wait to be seated” and read the specials board looking for anything that wasn’t filled with evil sodium.

My mom made her way into the restaurant and chose a table.  What was she doing?  We were supposed to wait to be seated as the sign clearly stated when I read it again.  I scolded her and she came back.  She also read the sign which in her reading said, “Please seat yourself.”

How did the sign change its wording in the seconds between my reading it twice and my mom reading it?    Since I’ve been able to read since 1st grade, I decided that the sign changing itself was a clear case of multiple sclerosis weirdness.

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After errands I dropped my mom off and headed home.  Thinking about health issues and my MS lack of reading skill issues had me wiped.  But I just had to go to the post office before I rested.  Who knows what was waiting for me in my mailbox- the Publisher’s Clearing House notice of my one million dollar winnings?

An invitation from Bradley Cooper to be his date at the premiere of his new movie?

Free tickets to the dream vacation of my choice?

Fatigue was not going to keep me from missing such important mail!

I collected my exciting mail- the water bill- and then got back into my car which refused to start.  Try as I might, I absolutely could not turn the key in the ignition.

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I struggled.

I forced.

I whined.

I took deep breaths and tried again.

And again.

There were many strong looking males in the parking lot, the type that looked like they might know a lot about cars, but I was too tired, too shy, too independent, too WIMPY to ask for help.  I preferred to sulk instead.

After about 20 minutes of this I called AAA.  I answered all the nice agent’s questions.

“Did you make sure the car is in park?”

Of course I did.

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“Did you jiggle the steering wheel?”

Of course I didn’t.

I jiggled and turned the key and the car started.  It was then that I remembered this same thing had happened to me twice before and jiggling the steering wheel was the mysterious answer.  But I had forgotten this trick.  Automotive weirdness.

Back at home I figured I had earned myself a snack, something crunchy.  I was proud that I had recently purchased something from Trader Joes that was sure to satisfy AND be healthy.  It was a bag called Crunchy Curls– a potato and lentil snack.ID-100132490

I checked the sodium, just to be sure.  And the nutrition label said that while this snack had no sugar, it had 380 mgs of sodium!  That’s more than regular potato chips.

But it’s made from potatoes and lentils?  How can this be?ID-100180475

And that, my friends, is unfortunately called life weirdness.

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What was the book that had me so involved I couldn’t even break to get some water?  It was the newly released Something on Our Minds, Volume 3– an anthology of writings by people living with multiple sclerosis.   The works are as varied as the writers and MS itself. Best of all, all proceeds from the sale of this edition will be given to the Accelerated Cure Project, an excellent non-profit determined to cure the MS beast.

Something on Our Minds, Volume 3 is available on Amazon and is totally worth checking out!

soom

 

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