Where do you go in the middle of the night?

It is one.  Then two.  Then three.  The hands, on the clock, seem to stop.  All I want to do is SLEEP!  But I cannot.  

I get up and look out the window.  How can the night be so dark?  It is almost a new color.  Black is not deep enough to describe it.  The street lights are a soft glow, but their light only reaches so far.  All I want to do is SLEEP.

I walk around the house.  Maybe walking will help.  I tried leaning over the chair.  That usually helps, but not tonight.  The dark seems to come right through the windows.  I don’t want to turn on a light.  That will wake others.  All I want to do is SLEEP.

I go back to bed and find that sweet spot.  You know...where your body fits in the mattress and relaxes.  Surely I can sleep now.  But no...All I want to do is SLEEP.

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I have RLS:  Restless Leg Syndrome.  Thankfully, I have medicine that controls it - most of the time.  Before medicine, the above is a description of my nights.  Every night!  Before medicine, the minute I would sit down or try to relax, my legs would go nuts.  Before medicine, a car ride of more than 20 minutes could be pure torture.  Before medicine, forget sitting through a movie or a meeting.  Before medicine,  I would get, maybe, two hours of sleep.  Before medicine...

My mother had RLS and our son is getting it.  My mother walked miles inside her home.  One night she walked into a door and gave herself a black eye.  There are nights that I raise my fist toward heaven and angrily say, “Thanks mom!”  

My RLS started slowly.  I can remember the first time it hit.  Out of the blue, I had to move my leg.  Until then I did not understand when mom tried to describe how her legs felt.  It is impossible to explain.  It is impossible to understand.  It can be random.  Allowing me to go to a movie and sit still.  We can drive all day.  But, when it hits, I have to move.  

Before medicine, I slept on the couch more than in our bed.  I did not want to keep Bill awake.  And trying to lay still made it worse.  When mother had this and when mine first started, there was not even a name for it.  There were no medications.  Anyone with RLS just walked the floor and screamed, “All I want to do SLEEP!”

I knew I had to do something when I found myself headed to the kitchen and thinking, “If I take a knife up the back of my leg it will quit.  It will stop.”  I woke Bill up because it scared me to think I might have tried that.  I went to the doctor.  Thankfully, my doctor believed me.  I started on medication in 2006 and it works, most of the time.  When it doesn’t, I stand at the window and look out.  Trying to find hope through that very deep black night.

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I am writing this to point out that many people have, what I call, invisible diseases.  Diseases that others cannot see and even doctors do not understand.  Yes, doctors, some doctors anyway, now recognize RLS as a medical condition.  But not in the beginning.  And even now, there are doctors that will tell a person suffering from RLS to quit drinking wine and get exercise.  I would not wish RLS on anyone, except those doctors.  I wish they would have it for a week.   

I am very fortunate.  First, I have a very understanding and supportive husband.  RLS can destroy a marriage and sleep deprivation can impact the ability to work.  Second, medicine will control mine, most of the time.  Third, I have found things that help.  I work jigsaw puzzles, while watching TV.  I work at the computer.  For some strange reason, keeping my hands busy seems to help, sometimes.  I can get relief in a rocking chair, sometimes.  Forth, the medical community now recognizes RLS as a medical condition.  They are not sure what causes it, but agree that low levels of iron, in the brain, is a contributing factor.  Sadly, there is no good way to raise those levels.  Iron shots help some people and not others.  I take a medicine that is for Parkinson’s, but that does not help others and comes with side effects.  While on this medicine, I will not shed any pounds.  

I have written on this before and doing so again, because I want you to understand that many people suffer from invisible diseases.  To look at me, you might not know that I did not sleep last night and that I am exhausted.  To look at me, you might think I need to shed a few pounds, or more.  To look at one of my friends, you might not realize she has fibromyalgia and that every part of her body hurts.  What about those with diabetes, rheumatoid arthritis, migraines, vertigo, chronic pain or fatigue, endometriosis, depression, spinal disorders, Crohn’s disease, allergies, or anxiety. These are just a few.  To look at these people, you might not know that they are hurting and wonder why no one understands.  That no one realizes how pain can invade a body.  How endometriosis can change your life and no one can see the scars.  I want you to understand that people suffer from invisible diseases.  And they are real!

Are you still wondering about me thinking a knife up the back of my leg might help?  I thought if I told people that they would think I was crazy.  Then I found a group page. Almost every person tells the same story:  There was this one night, it was so dark it could only be called deep black,  and I thought if I could cut my leg or even cut them off it would stop.  

And I realized...I am not crazy.  I found people who understand.  I found a page on Facebook where it is very common to see a post:  My legs are going nuts.  It is two o’clock.  All I want to do is SLEEP.