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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14 thoughts on “If you have Trouble with too much Sleep, you might have MS

    • You do not love them-especially the white sweater one-yikes! And I’ve seen your school pictures-they were wicked cute which is totally abnormal!

  1. This post was worth reading if only to encounter the baffling and wonderful phrase, “active sleep life”. I also enjoy reading anything that uses the term “butt shots”. Keep up the good work! 🙂

    Two side notes:
    1) Biking has actually improved my balance the more I ride. It’s excellent therapy!
    2) Neuro #1 should be put away somewhere where she will never again encounter a person with MS. Let her treat psychotic pit bulls while wearing Milk-Bone underwear.

    • Thank you Rick- hope you are well! I have been working on my balance with the WiiFit which has a cycling game/program. I even fell off my virtual bike and chipped my virtual tooth-haha!

  2. I agree with Rick, Neuro #1 is terribly misinformed, therefore, she either needs to get with the MS program, or get out of the business of attempting to treat MS patients. I, too, think your pics are precious.

    I am with ya on the sleep issue. The insomnia I experience is not due to anything obvious, like your potty trips. It comes in cycles and I may stay awake 24/7 for 3-4 days, despite the medication I take. Then sometimes I go several days and sleep 10-14 hours a day. Insomnia came into my life in 1999, 10 years prior to my official MS diagnosis & 1 year before my Fibromyalgia diagnosis. As we know we usually have these autoimmune issues long before we are diagnosed. I can trace signs of the Fibro all the way back to childhood & signs of the MS back to early adulthood. Anyway, the insomnia gets worse with each passing year. I have tried every sleep aid on the market. They work for awhile, then not. And woooo weee I could tell you some doozy stories about when I was taking Ambien.

    Thank you for the spin you put on this wild journey we walk. Humor is a must! Hugs to you & know you’re not in this fight alone! 🙂

    • Hugs back Susan and thank you! I’ve heard stories about the Ambien-crazy. If it’s not one thing on this crazy journey….If I couldn’t laugh at it I would have lost what little sanity I have years ago!

  3. Great stories. I am convinced that no one knows how MS feels, not even neurologists, unless you’ve been blessed with it. And then we MSers are all different.

    If I dream, I’m usually walking with no trouble and shopping with no fatigue. Wishful thinking!

    Take care in this Summer heat guys and gals.
    Audrey

    • Those dreams do sound fabulous Audrey! Wishing them for you each and every night. Sending you best wishes my friend!

  4. It sounds like we had the same neuro. I had the worst flu of my life. And for about 6 months after that, anything with a bad smell, smelled like sewer gas. Neuro said not MS. I haven’t worked for eight years and it still have nightmares about not being able to ever get enough work done to go home.

    • I feel you and your dreams Cheryl. Sewer gas- yuck! That has to be MS related! Thank you for reading and posting!

  5. Let me say you are the queen of sleep! Never heard of anyone scratching their initials into a wrist. And your dreams?…Dang girl, you should bottle what you are taking–it’s worth a fortune on the street!

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