MS Life

Thank goodness.  You’re still here!

I’ve been having an argument with Mr. Sandman.  It seems I always lose but I keep hoping some day I will win.  We have an unusual relationship which is not my preference.  Here is what he does.

He visits with me on and off all day long.  I keep telling him I’m busy and I don’t want to deal with him, but no; he comes uninvited and unexpectedly.  Then get this.  He might pop in and stay a few seconds, a few minutes or a couple of hours.  He doesn’t call or write to let me know that he’s coming over.  I mean that’s the least he could do since he comes over uninvited, for the most part.

I can’t prepare for his visits either.  How can I, when I don’t know when or where he’s suddenly here with me?  I can’t break if off with him, unfortunately.  He’s been with me my entire life, but at first he adhered to the rules and came consistently at regularly scheduled visits.  Now I have Multiple Sclerosis.  You’d think he would be more considerate!  Instead, he’s inconsistent and the quality of his visits leaves much to be desired.

Sometimes he visits and tells vivid, wild and meandering stories.  At other times, I hardly can tell he’s been around.  I’m extremely frustrated with him.  He’s become such a burden to me.  He makes me irritated and crabby even though he’s not around.  It’s difficult to plan anything because what if he comes when I’m out somewhere?  How embarrassing that would be. I’d have to drop everything I was doing to deal with him.  I can’t even tell someone I’m with, “Oh here comes Mr. Sandman.”  He just pushes his way in and ignores everyone else.

Here are some examples of how rude he can be.  I love going to movies, but I can’t tell you the last time I went where he didn’t suddenly appear.  He comes in and before I know it, I’ve missed half the movie.  What a waste of money.  Another example is when I’m working on a musical composition or at the computer.  He seems to like surprising me during those times.  I look at my computer screen and see pages and pages of one letter.  What I really hate is when he visits while I’m knitting.  Then after dealing with him, I realized I’ve dropped a bunch of stitches.  What a pain. 

At least he’s very quiet about his interruptions.  Not many people know that he’s become a bane in my life.   The number one reason for that is that I just don’t go out very much.  He’s put a huge damper on my social life.’’’’’’’’’’’’’’’’’’’’’’’

No.   What you see the line before this one is not a mistake.  Well it is, but Mr. Sandman must have been a little irritated with me because he just stopped by and left.  The funny thing is that the last time I looked at the clock it was 6:10 a.m. and now its 7:19 a.m.  He has a way of making time fly by.  I also had to find my glasses.  I almost rolled over them in my chair. 

Okay.  People with Multiple Sclerosis suffer from sleep disorders.  Perhaps I will rephrase that.  Some people suffer with it.  Prior to MS, I never had a sleep disorder.  Went I was tired, I went to bed.  I woke up in the morning just like anyone else.  Now I can go to bed and lie awake for hours until I finally give up and go do something productive.  When I intentionally go to bed to sleep, for the most part, I usually can’t.  If I do fall asleep, I wake up a few hours later and then can’t fall back to sleep.  What awakens me most nights is either pain, a need to use the bathroom, feeling overheated, or no explanation.  Once I wake up for any one of those things, I’m wide awake and if I try and go back to sleep, I usually can’t.  It’s unusual when I can.  I always try. 

Sleep should be something you look forward to.  Sleep is something I had to drag my children away from to get them ready for the day.  My husband can lay down on the sofa and fall asleep in the middle of the day with dogs playing around him and the TV on.  I can do the same, but I don’t plan it.

I loop upon sleep with dread because I want and need it and yet I can’t get the rest I need.  There are days when it catches up with me and then I stay in bed and sleep on and off all day long.  There are other times when fatigue sets in and then I can’t do anything at all but sleep.  I do get up out of bed and go downstairs, but the day is spent sleeping and this can go on for weeks.  Nothing gets accomplished.  Nothing gets in the way of my nothingness.  This is when I know that I have relapsed.  The only way to get out of it is to go into the hospital for IV steroids.  This need for sleep is my indicator of relapses.  Or should I say was.  I’ve advanced in this disease which I will explain in a different blog. 

There are so many different types of sleep disorders but I can only explain mine.  I’m told that I have developed a formed a case of narcolepsy.  It is why I’m so alert when I shouldn’t be and why I sleep when I shouldn’t.  I can actually be asleep although it appears that I’m awake and have no memory of being asleep.  This is why I can’t find things in the house.  I am actually functioning while sleeping.  I’m walking around doing things, but I’m asleep.  I once found the phone in the refrigerator with no memory having placed it there. 

This truly bothers me.  Add to that the medications that I take which are sedative and just call me a mess.

I’m very glad to be sharing my experiences with you because in a way it is cathartic for me.  To place words down on paper makes me think about my situation and finally allows me to admit that I’m ill, I’ll never get better, and I’m just going to have to find a way to deal with it.  Don’t get me wrong, I’ve always known, but I’m always admitting with one foot in and one foot out.  A part of me wants to disagree with the diagnosis. 

Every day is a cautionary day.  I have to proceed with extreme care and thought.  I long for my carefree days where I functioned on autopilot with no repercussions.  I am saddened, discouraged, and depressed over all of this, but hey, who wouldn’t feel this way?

I most go on and tell myself my mantra, “I am enabled by my disability.”  So I figure things out.  I change my world so that it works for me.  I’m very tired now and feel a warning sign, so I’ll get back to you later.