Tag Archives: matthew mcconaughey

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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Lawbreaker

Multiple Sclerosis goes criminal

 

When I typed the title of this blog post I was saying to myself, laaaaaawwwww breaker, using a Matthew McConaughey legal thriller voice.   What does Matthew’s southern accent have to do with this blog?

Nothing, it’s just how my brain works.

So here’s a question, if multiple sclerosis is criminal, and I’m pretty sure it is, why do its victims have to serve the time?  We didn’t do the crime.

 

I’m sure if we thought about it my MS friends and I could find some MS criminals worthy of doing the time; like say, the person who asks how you are and then proceeds to diminish your answer by telling you that they have your symptoms too.

Or maybe people who repeat the same thing over and over even as you tell them that thing doesn’t solve your issue.  (See a future blog post on that one- I have a couple of stories involving those types that I will be sharing in the future.)

 

And then there are the useless, unfriendly folks at the insurance companies- they should definitely do some time.

This summer I was at a public event and was talking to a nice retired couple.  When the subject of my MS came up the wife sympathized and then told me that her son-in-law had recently been diagnosed as well.

I expressed concern for him and how he was doing. It was then that she asked me if MS had ever turned me into a criminal!!

 

Seems in addition to his diagnosis, this relative had started absconding funds from his company, committed tax evasion and had become abusive to his family.

How best to answer this question?

I told her that MS can affect a person’s judgment and it’s a very expensive illness that might possibly leave someone desperate.

I told her that with MS comes vicious mood swings and I hoped that their family was getting the help they needed.

I also told her that everyone is affected differently and there is so much about multiple sclerosis that we don’t know that it is hard to speak for someone else.

“But has MS ever made you commit a crime?”  She persisted.

“Well no,” I admitted.  Like I would have said yes if it had- I’m not that brain fogged!

“I knew it!” She exclaimed.

 

Turns out that she wasn’t very fond of her son-in-law and the criminal behavior wasn’t new. What was new was that he was now trying to blame it on MS.  That’s playing the MS card in a whole new way!

But then, a few months later, MS DID cause me to commit a crime; drug dealing to be exact.

Here’s how it went down.  An online friend with MS had somehow accumulated several months of Copaxone, a very expensive MS drug.  It was the wrong dose for her and because drug companies get easily confused and red tape moves very slowly, they kept sending it to her even though she couldn’t take it.

As time went by she wound up with several unusable doses of this stuff worth approximately $35,000.  When the drug company FINALLY got her prescription right, she asked what she should do with the medication she couldn’t use.  The company told her they couldn’t take it back and she should just throw it away.

That seemed very wrong to her and so she called her neurologist for advice.  He told her the same thing; by law all she can do is dispose of it.

 

Imagine throwing away $35,000 of cold hard cash in the dumpster?  If I knew that someone had done this, germ-a-phobe or not, I’m going dumpster diving for sure!

My friend had insurance but knew that many people don’t and that even for those who do, copays for drugs like Copaxone are outrageous. She asked if in my travels online I could inquire if anyone could give these meds a proper home in their fatty tissue.

I certainly would have taken them off her hands if only it was my MS drug.  But it was not.

Being the helpful person I try to be and agreeing with my friend that throwing this stuff away was just asinine; I posted on two Facebook groups about the availability of these meds.

We weren’t even trying to sell them.  We were trying to save the planet and a fellow MS’er by not wasting what should definitely not be wasted.

But as soon as I posted this super relevant, super helpful announcement, the administrator of one of the FB groups told me that she had been flooded with comments pointing out that sharing medication was illegal and I was posting illegal activity on Facebook– a definite social media no-no unless you hide it in weird code that only you and fellow criminals understand.

 

I greatly thanked the administrator; I’m way too much of girly girl to handle prison well.

I took the posts down and hid in my closet while I waited for the feds to show up. Thankfully, they never did.

My near collision with the law just happened to take place the week before Election Day.  I went to vote.

 

At the polling station I pondered the ballot questions.

And I felt disgraced.

Not at the fact that I almost broke a law/broke a law but that the law was just incredibly ridiculous in the first place.

Yes I can fathom the reasoning behind it; you don’t know if the medication was tampered with, someone could decide to change their dose based on what was available, people could stop taking their meds in order to sell them, people might be inclined to unload expired meds which could be dangerous, etc.

But still, $35,000 worth of needed meds going to the trash is just wrong.

I wondered if there was a way to make a new law, one that would set up a safe resource center for medication.  Perhaps there could be a database where people could register their prescriptions and the center could examine them to make sure they were still good before sending them on.

I thought about making a new law and writing it in on my ballot.

 

Then I remembered that’s not how it works.  I watched Schoolhouse Rock as a kid, I know how a bill becomes a law.

It all seemed possible.

And then the fatigue set in and it all seemed overwhelming.

So while I did vote, that was all I was capable of that day.

But I can still think and who knows, maybe one day, I can come up with a plan and then a law to prevent such wastefulness.

Until then, I guess I’m just glad I wasn’t arrested…

But if I was, maybe I could use MS as a defense???