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.

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Time?

sena-20clock2I have had so much time to think lately.  I don’t think I care for it.  The gift of ‘thinking time’ comes along with a lot of pain from recovering from one thing or another which as you know means pain.  There is no right answer as to whether this prolonged period to think about things is good or bad.  I would hazard a guess that it’s both.

I had a fall the other day.  It was because I bent over to pet my dogs while standing and not holding on to something.  Dogs being dogs were excited.  They were jumping up at me and leaning up against me to get their share of the petting.  I lost my balance and fell forward onto my hands and knees.  Mind you, these dogs were not a large-breed dog but two tiny Chihuahuas.  I weigh a lot more than they do but these days, a drifting feather could knock me over.

It took a friend’s help to get me up off the floor.  I couldn’t figure out why I couldn’t stand up on my own when I could before.  I tried my usual technique but gave up and called my friend.  I had injured my knee, nothing major, but enough to prevent me from getting up.  There was simply too much pain.  My friend asked me about my wrists and I told her they were fine but yesterday they started hurting as well, particularly the right one.  This just happens to be the one that has carpal tunnel syndrome.

I had a carpal tunnel repair on my left wrist about a year ago and I should have done the right one as well.  I was too afraid to be without both wrists at the same time.

You know what I hate?  I hate that the last few blogs of mine sound and read like other blogs where all people do is complain about issues…all their aches and pains.  However, in order to explain all this time I have to think, I need to go into how I have this time in the first place.

Normally, I keep busy with a dozen different projects but with all these surgeries, falls, and the ongoing recovery not only from the physical aftermath of such activities, the repercussions that it has on my Multiple Sclerosis to boot.

My Neurologist tells me that it takes anywhere from six to eight months to recover from any one of the things I’ve gone through to get back to baseline in the MS sense.  The way I figure it, I’ll be in my grave snug as a bug with the critters therein, before I catch up to my baseline.

Another year flips over on the calendar for me tomorrow and perhaps that is why I’m thinking about time.  Time past, lost time, wasted time, and all the other zillion words you can place before the word time.

What’s bugging me right now is wasted time when time is a hot commodity in my lifespan.  I know!  I can hear you shouting at me!  “What about five minutes at a time?”

“Hey, it’s my rule and I have the right to break it occasionally!”

Do we all do this, I wonder?  Do we change our inner lives to meet the expectations of someone else in our life?  Is this being true to ourselves?  Have we lived a lie?  Have we just settled?  Have we become so adjusted to someone else’s life that it becomes what we perceive to be what we desire?

If we’ve been happy, how much happier could we have been had we been true to ourselves?  If we’ve been partially happy, the same question.  If we have known all along that we weren’t living the life we wanted to, why did we do it?

Is it easier to lie to ourselves than to admit to our self that we’re unhappy because then we would feel compelled to do something about it?  Worse yet, what if we knew we should feel compelled but decided not to change a thing?  Was it easier to make do?

Worst of all, what if the person we were with was the person we wanted to be with but that person was not capable of living in your world?  You had to conform to be in their world!  Would that make you a self-sacrificing person for love or would it make you simply stupid?

Is this what happens to someone who is sitting around waiting to heal?  Think about things that require answers if you want peace of mind.

I’ve taken all this time that I have to answer some of these questions that pertain to my life.  It came as a surprise to me, some of my answers.  Let me rephrase that.  Put on paper, it gave me clarity where I wasn’t necessarily looking for clarity.

You see, I had some time on my hands.  Did I waste my time?  Nope.  I think whether you have Multiple Sclerosis or some other disease that has you sitting around with time as a companion, that you may as well answer these questions, and then a whole slew of other questions I’m sure will occur to me before I go to meet my maker.

Maybe this is the natural process of aging.  We can do less, so we think more.  Which brings me to my last question.

Why could we not see so clearly when we were healthy?

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.