MISERY LOVES COMPANY?

Misery loves company?

Multiple Sclerosis, like so many other debilitating diseases that plunder your life with no end in sight, is a disease that wreaks havoc on your life.  My life with MS has taken control for the past several months to a point that I’ve been unable to do much, including writing.

For some, writing might be a release of sorts, but for me, who is trying to relay a message of hope and laughter in the face of unquestionable progression into an even more profound state of disability; it has made me unable to type such positive messages.

The difficulties that have beleaguered my life have nothing to do with MS.  Unfortunately, however; we all know that any traumatic events in our lives will set us back.

I love writing.  I love composing music.  I’ve been unable to do either one.   My pianos sit quietly waiting for me, all the while collecting dust.  I won’t let anyone touch them to clean them because I simply don’t want anyone touching my instruments.  They mean too much to me.

I pass the dusty pianos many times a day.  I look at them feeling guilty, however; the pianos aren’t judging me.  They sit there quietly waiting for their lover’s touch.

Writing?   I have done everything else at my computer except write a decent piece of work.  I’ve played games, done day trading, gone on Facebook only to log off immediately, and so forth.  I’ve spent a lot of time watching You Tube videos.  They help pass the time.  Don’t even get me started on why I don’t watch television to pass the time.

I feel as though I’m watching myself from outside of myself.  The one me, looks at me incredulously and mouths, “Why don’t you practice what you preach and pull yourself out of this?”  The other me, looks at me and thinks, what a mess!  She needs to get her hair and nails done and then she would feel better!  Hmpf!  Then there is the real me, a combination of all; the cheerleader, the vain, and the artistic one. This me knows that I still have some huge hurdles to get through still.  I need to prepare myself for them by sheer will power.

I need to do this on my own.  It is what I’m accustomed to and what I prefer.  I find resources along the way to help me.  What I hate is this.  People who love me want to help me.  They think that if I lean on them that somehow, they will be able to alleviate the things I feel.  It doesn’t work that way with me.  They don’t seem to understand, although they should by now, my methods of dealing with pain, be it emotional or physical.  It’s a private ordeal that I go through and no amount of “talking about it” to anyone; regardless of how close they are, will alleviate or ease anything.  It’s presumptuous of them to think that they can do anything about it at all.

I understand that what I’ve just written is rather cruel.  I would think that by now those that love me, already know that I am like a person who has just stubbed their toe.  I don’t want someone running over and touching me and saying, “Are you okay?  Can I help?  Where does it hurt?”  You know how it is?  You want to slap their hands away and let the pain ease off on its own before you can even begin to speak or interact with someone.

All of this doesn’t sound like me.  Does it?  It does, if you knew the painful young life I led, but that’s for another book.

 

WORD TO SELF:

Misery in your world does not love company.  Misery is a private issue for you and it hurts like hell to write it down on paper for all the world to see.  But you’ve done it!  I’m proud of you.

Emotional Misery: 

There are some people in your life who think you besiege yourself with living in past and just keep harping on it.  To some point, this is true but only with the people who are a part of that story.  A resolution that satisfies you must be settled and until it is, you will continue to take the steps needed to resolve some issues.  You will not allow people to ride around on their mighty self-righteous horses stomping you down into the ground.  You continue to stand in the way of their steeds until they are ready to life you up on the horse with them, as is your due.

I caution you.  You know that saying about bringing horses to water but you can’t make them drink.  This might be the case for you.  I know.  This is the crux of your misery.  It is up to you to decide when these people are no longer a viable part of your present life.  You have to let them go.  You can’t force people who are convinced they are right, that they are wrong.  They are unyielding to you.  Why do you yield to them and give them this power over you to make yourself miserable?  Think about it.

Physical Miseries: 

You know that you have this uncanny ability to spring back from physical injury.  You’ve had several surgeries already and its only April.  Now you see another huge one looming ahead.  Face it!  You’re afraid of this one.  You think that you’re not strong enough to get through it because you are already so weakened by various hospital stays this year, right?  This is true.  You may die?  This is true.  You may die anyway from some other ridiculous thing that comes your way even prior to surgery, right?  We all die.  In the face of reality, if you can accept the reality of what may or may not happen, it’s no longer something to fret about.  Take it step by step and prepare for either case.  You get through it or you don’t. 

There are things to be done if you don’t.  Do them.  Remember your “5-minutes At A Time Philosophy”?

Practice it.  You’ve let the ball drop in your panic.

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Multiple Sclerosis Is A Pain!

I am so pissed off.  I don’t know what happened.  I have been working on my book trying to get it done in December.  I’ve had no problems with accessing it.  Now, for some unknown reason, the file was saved to Drop Box and is nowhere to be found.  The desktop icon that I was using to access my file, now says “shortcut”.  Huh?  I have spent hours looking for it and I can’t do it.  I’ve sent a message to my son on Skype in the hopes that he can find it for me.  He’s a techie.

I’ve been so tense lately.  A few weeks ago, I bent down to pet my two dogs when suddenly I just toppled over.  I fell on my knees first and then my hands.  I landed up laying on my stomach while my dogs licked my face.  I’m glad they were happy.  It’s been several weeks since this happened and my knee still hurts, but it’s getting better.

Then there is this business with my eyes.  I had cataract surgery on both eyes.  One was done and then 3 weeks later the other.  I’ve been walking around with halos and blurry vision in one eye.  It’s supposed to get better but so far it hasn’t.  I’m seeing the eye doctor on Friday and hopefully he will help me out.

Insomnia is wearing me down.  I drag around all day having narcoleptic episodes all day long.  I wake up with things on the floor that I was holding while my youngest puppy is delighted with something new to play with.  Holding coffee in my hands is another thing.  I wake up almost screaming because hot coffee has spilled all over me.  I have to clean up that mess.

A few weeks ago, I was complaining about not going out.  Now all I want to do is stay home.  The idea of going out exhausts me just thinking about it.  I tell my husband that we will do this or that and then five minutes later, I’ve changed my mind.  I change it back again.  then I change yet again.  This goes on and on until finally it’s too late to do anything.

I’m still seeing double.  So now I know that it wasn’t my eyes but it’s due to Multiple Sclerosis.  You wouldn’t think so, at least I wouldn’t think so, but it’s incredibly aggravating to see twins of everything.  I try to pick up something and I miss it.  Or I go to put something down and I miss that also.  Whatever I was planning on putting down now tumbles to the floor.

I was baking the other day and my cup of flour that I was trying to put into a bowl, dropped onto the counter and the floor.  I missed the bowl completely.  So I had to clean that mess up as well.

It’s like everything is acting up all at once.  I hate the spasms and the impingement of a nerve in my neck.  Those two are extremely painful and make me cry out when they happen.  The spasms are in my legs.  I can feel it creeping up on me.  It doesn’t matter if I’m sitting or standing.

I realize that I’m in full blown exacerbation.  Or maybe this is it for me.  This could be how I will be for the duration.  My Doctor felt I was no longer Relapsing/Remitting MS.  I’m not willing to accept that yet.  “This too shall pass”.  That’s what I always told myself when I became ill because I knew I would come out of it.

For those of you who don’t know, with Remitting/Relapsing MS, you get ill and numerous things happen at once.  You become very ill.  Oftentimes, at least with me, this leads to hospitalization and IV steroids.  Then you go home with pill steroids and taper off.  This helps to hasten the relapse part of MS.

When you come out of it, you don’t come back as you were.  You come back with a bit more disability.  You’re almost new but you’re not.  That’s the problem with MS.  Over time, these all add up to a cumulative effect of becoming more frail and vulnerable.  You slowly spiral downwards.

It’s all a mess.  You struggle hard to keep up the journey forward but it’s like walking against the tide of water in the ocean that is unpredictable.  In a way, you sort of relapse/remit every day as well.  You go through periods of time where you feel almost normal and then in an hour you feel terrible and the day is shot.

I gather you all can guess that it’s been a difficult time for me.  I’ve had six surgeries this year and I need another one.

My usual chipper blogs, well they weren’t chipper but they ended with a positive outlook.

Let’s see what I can do here.  You guessed it…..

 

MY SPIN ON THIS:

Let’s face it.  It’s not only us who suffer from difficult things in life.  There are so many things that go wrong in any person’s day-to-day activities.  There are many other conflicts that we all deal with whether they are psychological, personal such as abusive, stress over children and home, and on and on.

It’s how we handle all this that measures who we are as people.  Don’t do it for someone else but for yourself.  I don’t care what anyone else thinks of me.  I’m too old for those games, however; I do care how I feel about myself when I lay down to rest at night.  

This doesn’t mean that I don’t cry, mope, scream, laugh hysterically, and shake my head over the inexplicable and uncontrollable events that suddenly pop up in front of me. We’re not looking for it to happen, we bang right into it.  Taken by surprise, we react in many different ways.

So it’s up to us to decide how we’re going to deal with it once we get over the shock of it all.  Do we lay down and immerse ourselves in the tiniest and rudimentary pain of it all, or do we stand up in pain and continue on?  

I know, personally, many who seem to have given up.  What happens to them?  They get worse much quicker than they need to.  If it hurts too much to walk and they start using a wheelchair all the time, their legs waste away.  There’s a thousand things and ways that they quickly start to lose control of their bodies.  Once they get that ill, they lose control over their emotions.  At least this is my opinion from watching people I know.  

I ask you, why do that to yourself?  All of this will happen anyway but why speed things along?  I have a few answers to that question but this is not a blog on psychology.  

I prefer to stand in pain, but I’m standing.  Walk in pain but I’m walking.  Go out in pain, but I’m out of my house.  Go to dinner with high hopes that I can stand the restaurant’s noise and people chattering, but I know I will leave the table before dinner is over.  At least I went out to dinner.  As so on and so forth.  You get the idea.

It’s your choice.  Choose.  For right now, I’ve got dinner on the stove and my husband will be home shortly.  I’m in extreme pain, but hubby works all day and comes home to me, half the woman I used to be.  He panders to me all night.  The least I can do is make him a nice dinner.

Lonely

lonely2There are days that I hate.  Today is one of them.

What makes certain days intolerable in my life with Multiple Sclerosis?  It’s a day where I’ve gotten up, showered and dressed, put on makeup and did my hair, and when done; I have nowhere to go and nothing to do.

It’s so hot!  I’ve already talked about heat intolerance, but that’s not what this is about.  This is about, almost without thought, the awakening of my spirit to the outside world and wanting to be a part of it.  I get up and do what any normal person would do–get ready for the day.  The problem is, there is no day waiting for me.

I’ve gone about my day doing daily tasks, taking care of the dogs, and working on my computer.  I fell asleep during my lunch, woke up then finished my lunch.

I went into my office to check on a trade that I had placed in Forex earlier in the day and saw that it was in a sideways movement, not going anywhere, so I closed the trade down with pennies for profit.  I too am going sideways, going nowhere.

The high point of my day was when the mailman brought a box to my door from Amazon.com.

I’m not sad.  I’m frustrated and bored.  I’m also lonely.

I’m very lonely.lonely