Friday, January 8, 2010

Eyes wide shut

I started the steroid regimen yesterday morning before I went to volunteer with the school kids.  I didn't notice any differences in my body or mood.  I was tired, so I decided to take a nap.  It was around 9:45 am.  This is when I started noticing things.  I was laying there and all of a sudden my arms involuntarily jerked upwards and nearly hit my chin.  I repositioned and then my legs started jumping around.  I felt like some unseen force had taken control of my body and was sadistically pulling my puppet strings.  After 30 to 45 minutes of being out of control, I got up.  You might think that an experience like that would have me freaking out, but it's something I've lived with since I was around 11 years old.  I have Restless Leg Syndrome (RLS).  For me, it only affected my legs.  It's hard to describe, but it's something akin to the feeling you get hours after a really hard workout.  You know the feeling you get when your leg muscles are really tight and need to be stretched out.  The problem is that there isn't any amount of stretching that will satisfy the feeling.  It only affected me at night when I tried to go to sleep.  My legs would jerk involuntarily every few minutes.  The feeling in the legs wasn't painful, but rather it was just always there and frustrating.  I learned to live on 4-6 hours of sleep per night.  The sleep I did get was not a solid, deep, and uninterrupted sleep either.  I would wake up several times during those 4 to 6 hours.  In the last couple of years, RLS has been identified and there were some drugs that were supposed to treat it.  I tried a couple of them with no success.  One of them caused my heart to feel like it was constricted--I thought I was having a heart attack.  The other one didn't touch my symptoms.  Finally, around 3 months ago, my doctor told me about a different drug that had shown success with RLS.  It's a drug used to treat Parkinson's disease.  I tried it and (ring the bells and praise the lord) it worked.  Instead of it taking me between one and two hours to fall asleep (on a good night), I was asleep within 10 to 15 minutes and the legs were normal.  I hadn't felt the RLS symptoms in months until yesterday when they returned with a vengeance. 

Keep in mind that all of this happened after only one steroid pill.  I still had 5 more to take that day.  The afternoon was uneventful.  I took 3 more of the pills.  Later, I noticed that I was getting really irritable.  I was using my laptop to read some blogs and the computer was slow and kept freezing.  My anger was growing and I came close to smashing it on the ground.  I think my shirt started to rip like when David Banner was transforming into the Hulk.  I gained control and, fortunately for the laptop, decided to watch a running movie called Running On The Sun.

This documentary chronicles the Badwater 135 mile ultra run that starts in Death Valley in the middle of summer and finishes at Mt.Whitney.  I was glued to the individual stories and I noticed that my heart was racing.  I wasn't sure if it was from the fear I felt from even thinking about attempting to finish that race, or if it was due to the steroids.  One of the things I liked about this race was that the competitors were not the super athletes that have sponsorships and run in the olympics.  The competitors were everyday people who loved running and challenging themselves.  All but four of the competitors were there just to finish.  I don't want to give anything away, but there was a group of Marines at the race that really made me proud--if you watch the movie, you'll know what I mean. 

By the time I went to bed, it was around 1 am.  Always fearful of mixing drugs, I didn't take my RLS pill.  I took the final 2 steroid pills of the day and layed down to sleep.  I had to be up at 6:55 am to get the kids to the school bus.  Almost immediately, I recognized that old RLS feeling as I heard Simon and Garfunkel in my head (hello darkness my old friend, I've come to talk with you again).  If you don't know who Simon and Garfunkel are; Simon is the short guy from the music video who was playing all the instruments while Chevy Chase sang that song, "You can call me AL".  I don't have any references for Garfunkel.  That's a funny name to say--everybody, as fast as you can, say Garfunkel three times.  This night ended up being terrible.  I could not get to sleep.  Both legs and arms were moving like I was MC Hammer.  My heart was racing--at one point I clocked it at roughly 170 beats per minute.  I wonder if I could count that as a cardio workout.  In addition to all of this, I had acid reflux going on.  This is something I've only experienced two or three times in my life.  That burning sensation is really weird, and kind of disconcerting.  I played the game of watching the clock until 5:25.  At that point, I thought, "hey, I can still get a solid hour and a half in if I fall asleep right now"--call me an optimist.  That was the last time I looked at the clock before it's alarm woke me.  Usually, I'm all over the alarm having turned it off before it's reached the second beep, but not today.  I heard the loud beeping and was trying to find it, but there were all these curtains that I couldn't get my hand through to turn it off.  We don't have curtains in our house.  The alarm must have been going off for a long time because I saw my wife, who sleeps like the dead, sitting up, angrily saying to give her the alarm and she'd turn it off.  I got up for the day and didn't feel the least bit tired.  Strangely though, both of my achilles' heels have been itchy all day and I have a hive on my right arm.  All night long, I kept thinking--you idiot, you should have gotten the shot.  So now I sit here dreading going to bed--It's like I live on Elm Street and I know Freddie is waiting for me except I want to fall asleep, but can't--what a nightmare

As far as my goal to get to 500 sit ups a day goes, I just finished # 200 for the day and I still have 2 1/2 more hours left in the day.  I know I won't get 500 today, but another two sets of 75 seems reasonable.

6 comments:

  1. I have never met anyone with RLS, though it sounds awful. I hope the steroids work and that you can get some sleep soon.

    Garfunkel, Garfunkel, Garf..oh forget it.

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  2. Thanks for commenting on my bloggeroo!
    Um, same boat right now. I don't have RLS, but I'm wide awake, since 12am. I went to bed at 940. I think I'm getting sick though because my whole body aches and I feel really out of it.
    Cool how I have a 6 mile in the morning, right?

    I used to work in a sleep lab and one of the things we helped diagnosis was RLS. Most people had RLS and sleep apnea, but occasionally I would run into a really nice, skinny fit and healthy person with the worst RLS I've ever seen. We put these little electrode leads on the anterior tibialis muscle that shows us a graphic representation of limb movements. Watching someone with RLS was so sad. Every 90 seconds, rhythmically, they would shuffle their feet or legs (or occasionally arms) and as a result, they're little brain would wake up for a few seconds (we also placed EEG brain leads on their head to read when they were asleep or awake). If you could imagine how much sleep one truly gets being awoken for 5 seconds throughout the night consistently every minute and half ... what a nightmare. Of course we hope from that study they would be placed on appropriate medications. I'm glad you found one that works for you (when you get to actually take it!) and that you've had better rest over the years.
    Let me end my NOVEL by saying "Good Luck" with the steroid treatments and I'm saying hello from insomnia land!

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  3. Thanks for visiting my blog! My husband has RLS (light for the moment), but his doctor suggested he wear a boot at night....He has not done so yet, but I've heard good things about it. Good luck with the steroids....it all sounds a bit hectic at the moment though.

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  4. Hope you get some good rest this weekend!

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  5. Thanks everyone. Rachael, I hope you're not getting sick. I've been a resident of insomnia land for roughly 30 years--I guess you could call me a native. Natalia, I can't even wear socks to sleep in, let alone a boot. I sincerely hope your husband's RLS treatment works out. One thing I didn't mention was how it affects the spouse and those around you. Over time, a lack of sleep changes you and not for the better. You display all the symptoms of someone who "got up on the wrong side of the bed" only they're magnified and last for days at a time.

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  6. I was diagnosed with RLS about 4 years ago...but I couldn't stomach taking meds every single day of my life. My RLS caused me to get severe cramps in my calves which were basically charlie horses...kept me from sleeping for months. But I found a couple things that helped and you know...it's sort of stopped.

    I get a regular massage and noticed my muscles immediately when I have not had my legs massaged for over a month. I also read a book by Dr. John Sarno about mind over body and found it really helpful

    anyhow good luck, I hope things settle down for you

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