I’m So Fricking Tired!

Fatigue.  What is it?  Medicine Net describes it thus:

  • Fatigue (either physical, mental or both) is a symptom that may be difficult for the patient to describe and words like lethargic, exhausted and tired may be used.

The dictionary website describes it as this:

noun
  1. weariness from bodily or mental exertion. a cause of weariness; slow ordeal; exertion:
the fatigue of driving for many hours.
  1. Physiology.  Temporary diminution of the irritability or functioning of organs, tissues, or cells after excessive exertion or stimulation.

What about fatigue in Multiple Sclerosis?  The above MS website has this to say.

Fatigue
People with MS may become more easily worn out after physical activity than usual. In addition to experiencing physical fatigue from doing simple things, people with MS may also experience mental fatigue from depression. There is also a type of fatigue called “lassitude” or “MS fatigue” that many believe to be unique to people with MS, which is generally more severe than normal fatigue. This type of fatigue may happen almost every day and could start early in the morning after a good night’s sleep. Lassitude also often worsens with heat and humidity.

Here is what fatigue means, not a quantified version of what fatigue is.

  • It’s the inability to sleep soundly at night. Yep, you heard me or read me…whatever.
  • You want to sleep but you can’t or maybe you won’t. You start out in bed and you fall asleep, but after an hour or two, you wake up.  Why?
  • Incontinence, must go to the bathroom.
  • Pain, you wake up with it.
  • Brain turmoil, there is too much going on in your head and it won’t let you rest. A sense of having to get something done.
  • You awaken bright-eyed and bushy tailed.
  • For me, I prefer night to day.

When you wake up, whether it’s in the morning or in the middle of the night, you are going to feel tired.  That’s true, but tired and fatigue are two different things.  Tired is due to all of the above, so is fatigue, but fatigue is so much more than that.

You want to go back to bed, but you don’t.  I know.  It’s a conundrum.  It’s habit forming to stay up once you wake up.

Another reason is that you’re too “tired” to go back to bed.  I know, it doesn’t make sense, but those in the know—know.  It takes too much energy to crawl into bed again and go through the whole process of trying to sleep.  This part is fatigue.

It’s easier to just stay up and walk to the computer with coffee in hand than to go through the nightmare of the sleeping process.  However, once you’re at the computer, or watching TV, you fall asleep with your coffee in hand.  You wake up with scalding coffee dripping down you.

You jump awake and you hold your nightgown away from your body to stop the burning, but you don’t go change into something clean.  You wait until everything cools down and you continue doing whatever you were doing until you fall asleep again.

The day becomes a nightmare.

You try to listen to conversations but you feel yourself falling asleep.  You snap awake, but you find yourself sliding down again.  You can’t control it.  If you’re doing something physically active, it’s easier to stay awake, but I’ve found myself falling asleep standing by the sink doing dishes.  You have a form of narcolepsy.

You have no desire or very little desire to do anything.  You force yourself to do things, nonetheless.  At least I do.

I am blessed with artistic abilities in various forms, so that can keep me busy—for a while—then I fall asleep.

You feel compelled to say yes to friends and family to do things with them and yet you have this deep-seated desire to say no.  When it comes time to do this activity, you bail out or you go and try your best to be “there” in the moment.

Fatigue to me is this overwhelming desire to stay in my jammies, which I do anyways most days, and do nothing.  My head is too heavy to lift, so are my arms and legs.  I want to lie prone.  I want to do nothing and think about nothing.  I don’t care about anything.  I am neither here nor there about every conceivable subject.  However, what I just wrote is the last thing I want to do.  I don’t want to lay prone and do nothing.  It’s impossible for me to lay and thing about nothing.  I do care about everything.  I am here and there.

Once again, I’ve written things that may be confusing to people.

I’m not explaining this very well, but I’m here to tell you, yes you, who think that you know what fatigue is, you don’t know anything!!!

You are tired and sometimes feel fatigue.  That’s it.

We are fatigued and sometimes feel tired.  Another ball of wax entirely.

Nothing has happened to me to cause me to write on this subject except that I’m feeling fatigued.  My mind has gone on a hiatus.  It requires rest and quiet.  Not rest in the way of sleeping, but a slowing down of the world at large and being in a place where decisions belong to someone else.  Unfortunately, my world does not slow down.

People think that when you are disabled and a stay-at-home person, that you have all this time on your hands to just do whatever you want or do nothing at all.  To a certain extent, this is true for some.  This is not the description for others.

I will talk about this in my next blog because if I start it here, this blog will be ten pages long.

Hugs to all who read this.  I sincerely appreciate your eyes that touch upon the words written by my shaking hands, the heart that takes to heart the words of confusion and yet cohesive linear paths to what it is I need to say.  Well maybe not so linear.

 

 

 

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ME AND THE MAN IN THE MOON

I have such an incredible headache.  It pounds at the back of my head like an impatient person at my front door.  I’m working very hard to keep it at bay but I feel my strength waning.

I wonder what would happen if I opened the door.  Would the headache cease because the pounding at the door stopped or would something worse happen because a stranger is now inside my home?

I don’t think I care to find out, so I’ll fight until the fight is over and I come out the winner.

I think I know why this pounding is going on.   I can’t sleep at night.  Part of this problem is due to Multiple Sclerosis and part of it is because I love the night.

I escape into the night and I find it quiets my soul.  It is a time of day where there is no sound of passing cars, no ringing phones, no appointments to get to, no meds to take and no responsibilities whatsoever except to myself.  There are some in my family who feel that my love of night is irresponsible because of how it affects my days, but I continue my love affair with the man in the moon, when he shows up to keep me company.

I am a composer and I do my best work at night.  I am a creative person in other areas and that is when ideas come to me.  What do I care how my days go?

My days are where I have my worst nightmares.  It is during this time that I have my myoclonic jerks, my narcolepsy (partly my fault), my inability to walk a straight line, the never-ending visits to Doctors, the onslaught of 38 pills in a day and the affects that they have on me, and so on and so on.

Leave me the night where the blanket of warmth covers the bodies of those I love and those I could care less about.  Leave me the night where melodies role around in my head and with headphones on, the notes spill out of my fingers onto my keyboard.  Leave me the night where there is no one to pretend to, the putting on of my mask where there is a painted smile on it.  I wear it well.

You have your days, I dance in the night where my waking dreams have me waltzing with the man in the moon without canes or walkers and I am beautiful in body.

Multiple Sclerosis and various other maladies struggle with me to take over my body during the day.  At night, I am a fierce warrior and take control with ease and I am who I am without the interference of well-meaning people who tell me I CAN’T.

I’m here to tell you I CAN.moonlight_dance_believe_fairy_bag_backpack-r2844394b97cf4741a5da0d85d1da4f77_zffcx_324