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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Life in the New Year!

cutting-looseAh, the new year is upon us.  Should we celebrate it or not?

It looms before me and if it was anything like last year, I think I’ll press the reset button on my life and hope it takes me back to before last year began.  Six surgeries!  I almost tremble at the thought of what this year might bring.

Actually, now that I think about it, I don’t fear the new year.  I anticipate it just like I anticipate anything new.  It’s like a Christmas gift that one gets where you open the package slowly in anticipation of what it might prove to be.

Just like Multiple Sclerosis.  You just don’t know what the year will be like, but isn’t hat true of anything?    Rather than fear the new year, I think I will embrace it as it unfolds, like a lover where you run kisses up and down his face until you get the reaction you want.  LOL.

I’m sitting here thinking, bring it on! I know I can handle anything this new year will bring me.  Perhaps I will get lucky and face only great things.  Maybe I won’t be so lucky and have a predominantly difficult year.  That’s okay too.  I’ve proven that I can handle many things that I thought I couldn’t.

Add to all the physical problems were the emotional ones to do with family.  It was a traumatic year for my family which of course, rolled on to me.  When they hurt, I hurt. When I hurt, they don’t.  Seems a bit uneven doesn’t it?  I don’t care.  It is what it is.  Their pain is mine, at least it affects me as though it happened to me physically.

The ambiguity of life is common to all living things.  None of us knows what will happen to us even within the scope of my favorite five minutes, the one that is happening right now. For instance, I spill this cup of coffee all over my computer keyboard and in the process I burn my hand.  I don’t care about the hand.  I grab something to wipe the keyboard down with or flip it upside down hoping I caught it in time so that the coffee didn’t have the chance to drip down between the keys.  Dream on.  I’ve never been that lucky.  I move way too slow to catch it in time.

This leads to a ruined keyboard.  I can’t get through a day without a keyboard since I’m primarily a desktop user.  What to do?  I could order one online, but I would have to wait a day or two, if not longer, to get a keyboard in the house.  I could use my husband’s keyboard, but then he’d be without his and he works on his computer daily like I do.  I don’t like it when my battles seep into his daily life, although we all know it does. However, this is something I can do something about.  Let his computer alone and deal with my own problem.

This then leads to, should I buy one sight unseen or should I go down to a store?  The last one  I bought was sight  unseen.  It turned out to be a nice keyboard, as keyboards go. Should I get the same one?  Nah.  Things change during the course of a year.  Technology changes and I’m addicted to the latest and greatest.  Going out to check out the keyboards has a two-fold advantage.  I get out of the house, and of course, I get to check out the latest and greatest.

I find my old keyboard and compare it to the newer keyboards.  They vary in price and in function.  To wired or go wireless?  To go with a mouse included or not?  You get the idea. One event sets off a series of other events.  Should I look ahead and plan for every possible outcome or should I deal with what is happening right in front of me right now?

I can’t sit around and worry about every possible outcome while my keyboard is getting ruined and everything else that is in the way of the path of spilled coffee.  I need to take action right now for what is happening right now.  I need to mop up the spilled milk, then assess my wet keyboard and so forth.  If I take things sequentially and logically, I can deal with it one step at a time.  If I think about it and weight all the possible things I can do, in the meantime, what started out as a bad event grows into a destructive event instead of a minor one.

Okay, so all this leads me to think this about the new year.  Not to worry.  Not to fear.  Not even to plan.  Planning assumes too many things which turns into worries.

I don’t make resolutions because I have too much respect for myself to set myself up for failure.  If I do well with something I would like to improve, this is good.  I think that most things that need improvement will take more than one year to take effect.

I will go my merry way, as merry as I can be, that is.  One step forward leads to another step forward and eventual destination.  Along the way, there will definitely be falls, perhaps some broken bones along with tears of consternation, anger, sadness.  This is the story of life.

All of us can lead a life of being disabled or we can choose a life of being enabled.  My disabilities does not disable me nor does it define me.  My ATTITUDE is what can disable me.

You choose for yourself.

I am enabled by my disability.

 

Call Me A Jerk

Hello my dear friends,

Today and the previous two days my myoclonic jerks and/or dystonia have been acting up.  Just call me a jerk.

UnknownI’ve been so spasmodic that my husband’s face was creased with worry.  He demanded that I go back to bed.  It was a good thing to do.  I was slipping and sliding in my chair because I could not control the jerks that propelled me forward inch by inch towards the end of the chair, and eventually, I would be on the floor writhing in agony.

You see, I also have a form of Dystonia.  I forget which one my Neurologist told me, but he rattled it off on my last visit.  He said, “You know that you have?????? dystonia, don’t you?”  I was surprised.  He said, “not only do you have MS but you have a secondary disease of ??? dystonia.”  I stared at him looking dumb.  I replied finally, “Great, just great.”  I knew I had myoclonic jerks, but I didn’t know that I had a second disease.

All of what is happening to me these days is because of stress.  My quality of life is a daunting challenge and I have to fight every day for some form of normalcy.  I mean, my kind of normalcy, which we all know is also challenging.

The cause of all this stress is my upcoming surgery on Thursday.  My surgery is unrelated to Multiple Sclerosis or Dystonia.  This surgery will be attended by two Doctors and will take 3-5 hours.  I have good reason to be concerned which I won’t go into here.

slideshow_1259634_131408-clocksI have to focus on my 5-minutes at a time.  If I didn’t, I would be a mess right now.  However, the stress is still there even if you have a plastered smile on your face and I’m good at wearing a smile despite everything in my life.  Surprisingly, it works in that once you have a smile on your face, although it is “put on” in the morning, you find yourself living that smile.

My take on all this:

Stress is not always evident by your physical nature, however; it finds it way to the surface psychologically of physically in due course.  When it becomes evident to you and others by your body’s reactions to every day occurrences, then it’s time to figure out what may be causing that stress.  Once you know what it is then you can find a way to deal with it.  When you can’t find a way to deal with it, take your day in small increments and handle it that way.

I sit here hoping to hear your prayers on Thursday with a smile on my face taking my life 5 minutes at a time.  Sure, I’m still jerking around all over the place but that can’t be helped.  There is no way to take away the underlying fear of surgery.

I will happily jerk my way until Thursday at which point I will probably succumb to tears.  Meanwhile, I am as ever, a jerk.

Frazzled

health_drvisitI have been running around all week going to one Doctor then another.  I am having surgery on the 1st of September.  I have a huge incisional hernia that has been bothering me.  Isn’t Multiple Sclerosis enough?  My cup overfloweth!

As I think about you, wondering how you are, I sit here trying to communicate with you and longing to see you.  There is nothing and no one like someone else who has the same identifying disease, Multiple Sclerosis, who could understand the emotions that run through head and heart during times of stress.

Surprisingly for me, I am having a difficult time following my own philosophy of “Five Minutes”.  I will have this up soon for you to look at.  Those of you who are following me or give a “Like” on my blog will get a free copy.  I am failing miserably at this theory.  I have to read the E-book myself to boost myself up.

My husband is very worried as well.  I will have two surgeons at my side and will be under anesthesia for about 4 hours or more.

I hate anesthesia.  When they try to put me to sleep, I fight it, which is pointless.  I think it’s because I hate being completely out of control of my body.  Secondly, I’m afraid I won’t wake up from nothingness, not even dreams live in that anesthetic state.  Thirdly, it’s a bit insane to allow yourself to be taken under to nowhere so that people can look at you at your worst, then look and muddle their way inside of you  in places that you haven’t seen yourself.  In a way, physically at least, they know more about your body than you do.  It’s a very intimate knowledge.

On top of my sundae, there is always a cherry on top.  This cherry is finding out that I will need to have cataract surgery on both eyes.  One eye will be done in October and two weeks later, the second eye.  Isn’t this fun?

It would be great to hear from more of you to hold me up in spirit during these difficult days.

But wait!!!  Let’s do a—

My Spin On This

Okay.  Let’s do my thing here.  I will analyze myself.   What is your problem, Maggie.  Why are you ignoring your own rules?  Why are you in a panic over a surgery?  I know you had sepsis once but that’s old news.  You can’t compare one to another.  You can’t or shouldn’t project about what happened in the past to a situation that is going to happen in the future.  What happened to living right here and right now?  So give yourself a slap upside the head and be a good example for your family and friends.  Yeah, the people reading this are your friends too.  Why else would they spend their precious time reading all your stuff.  So forget about all of it.  Just concentrate on what you’re doing and do it well.  Okay?

Hmpf!!!!!!

 

Love What I See

blinded_by_fra01000110-d38aphxThings are very blurry today.  Just another day in the life of a person with Multiple Sclerosis.  This is not unusual for people with MS.  In fact, for many of us, this is our first symptom.  There is usually a deep pain behind the eyes along with visual problems.

I take my glasses off.  I put them back on again.  I peek over the top of my glasses.  Then I pull them up so that I can look at a different part of my trifocals.  Nothing works.  The best way to see is without the glasses altogether.  This will pass in a day or two–I hope.

My vision became wacky yesterday while I was visiting a friend of mine.  There we were talking and I kept seeing two of her.  I didn’t know where to look and wondered if she noticed my eyes bouncing around trying to focus on the right person who sat just a few feet away from.

I gave her an exciting visit besides the dance of the jiggling eyes.  We were about to step out back.  She was in front of me opening the sliding door and I behind her, as a sequel to the dance of the jiggling eyes, I decided to drop and dance down on the floor knocking over her coffee table.

I laid on the floor quietly trying to assess any damage.  My baby finger on my left hand was throbbing like crazy but other than that, everything seemed to be okay.  I’m almost certain that finger is broken.  I’ve had it wrapped for about 24 hours or more and it’s not improving.  So I’m headed to a Doctor’s office to see if they can wrap it properly.

Everyone needs a friend like I have.  She sat there quietly.  She asked me if she could look at my head.  She was certain I hit the back of my head.  I had not hit my head.  She looked so worried that all I could do to allay her fears was to smile and tell  her everything was fine.  I did admit to my finger hurting.  She went hunting for bandages, came back with a box of band-aids  and taped my baby finger to my ring finger.  That made it feel better immediately although the throbbing continued.  Yes, we all need and deserve a friend like mine.

I don’t know what caused this fall.  I was standing one minute and the next, I was on the floor.  Although I hate the loneliness of being inside my house almost 24/7, I admit that I’m rather afraid of going out for fear of things happening like this.

Now if I could see clearly, I would feel better as well.

Sometimes, when people are not demonstrative, you can still see the love and compassion in their eyes.  Since most people I know do not verbalize very well, it’s the seeing that becomes my strength through them.  Seeing is important for me.

My Take on This:

We had a great time!  Friendship and love is worth every topsy turvy fall any day.  

The Day Multiple Sclerosis Overpowered The Microwave.

indomitable-spirit

My microwave needed cleaning.  I couldn’t see how bad it was except from the perspective of a short person (4’10”), but when removing items from the microwave, of late, I detected the pull of stickiness.

Okay I hear you….”Wait, you have Multiple Sclerosis.  Don’t even think about it!”

I knew I couldn’t reach up there far enough to clean it so I stood there and thought about it a second.  I have two different size stools from many years ago.  I don’t know why I cart them around because I shouldn’t use them, but I was glad I had them now.  I pulled both of the stools over to the microwave.

After arming myself with supplies, I put them on the counter where I could reach them. Then I stood there and studied the stools.  One stool was just one step and the other was two steps.  Logically, I thought I would start off with the one step.

I went over to the stool and tried to figure out how best to get on it.  It didn’t have grab bars so I would have to rely on myself or hang on to the stove or counter top.  The problem was, is that there was nothing to pull myself up with.  I couldn’t just hop on under my own power.

I tried to get one foot onto the stool.  My leg wouldn’t go as high as the step.  I tried again, this time pulling on my pant leg to help it up.  After several tries, I got it up there.  There I stood with one leg up on the stool and huge question mark on me.images

Now what?

I’m not able to push up like most people.  My neurological deficits affect many areas of my body including my ability to walk well and my overall strength.

I looked at the counter and the stove.  Could there be something I could grab onto to pull myself up instead of standing there like a child faced with an enormous decision?  To me, nothing truer could be said.  I was a lost child trying to figure out how to get from point A to point B.

I finally noticed the overhang of the counter and the handle of the oven door.  I opted for the overhang of the counters, thinking this is the safer option.  I hung on to the edge of the counter with my fingertips and SUCCESS, I had my other leg up.

I positioned myself and attacked the inside of my microwave with zest. Finally, after 15 minutes of cleaning frenzy, my microwave beamed like a brand new one.

imagesNow how to get down?

I started to shake.  In my effort to clean my microwave, I did not notice the weakness in my legs until I was done.  Contributing to the shaking legs factor, was my fear of falling down in getting off the stool.  Don’t get me wrong, I was damn proud of myself for having accomplished what I had set out to do, but I often leap then look when I make decisions based on my absolute need to get something done.

I looked down at the floor which seemed about a mile down.  I truly was terrified and having shaking legs was not helping me at all.  Would my fingertips hanging onto the counter be enough to balance a light landing, or would I come crashing down?  Well, I couldn’t just stand there all day shaking, now could I?

I held on to the counter as tight as I could and hoped for the best.  I couldn’t see where the floor was in my position so it had to be a blind faith jump down.  I reached down with my left leg and tried to feel the floor.  That would have been too simple.  Of course, I couldn’t feel the floor!  I had to bend down on my right knee to reach further down.  Luckily, my right knee was stronger than my left.

I broke out in a sweat as though I was climbing back down Mount Everest instead of a tiny stool.  Bending down on my right knee, I finally felt the floor with my left foot.  My fingertips that were hanging on to the overhang, let go without my permission and down I went with a jar.

I didn’t care that I came down with a thud.  I did it!  I cleaned my microwave.  I would have danced a jig if I could have.  Instead, I happily but very slowly walked over to my recliner in the family room and sat down.

My Take On This:

This was huge!  I didn’t know that I could do this.  I wouldn’t do this today, as this event happened a while ago, however; it still is huge in my mind.

What I did was irresponsibly dangerous.  I could have taken a fall and with being alone in the house, I may not have made it to a phone.  (Yes I know, I should get one of those push button call for help thingy, but they advertise it with old folks crying for help. I did not want to categorize myself as a person like that.)

In looking back at this, I still am damn proud of it.  In fact, it’s rather humorous.  It’s rather poignant that I look at this as a big event still.  It’s these tiny things that I do, that loom so large in my life, that gives me the power I need to continue to think positive about this disabling disease, Multiple Sclerosis.