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.

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?

Don’t Swat The Fly

fly_fly1Hello.

I hope you are doing as well as you can be in this imperfect world of ours.

I’ve been in and out of here due to medical issues.  I’ve had six surgeries this year.  Ugh.  I have one more I need to schedule.  I’m hoping that this will be put off until next year although with the symptoms I am having that makes it apparent that I have a problem, I don’t think so.

It seems to me as I head off to another birthday which gets me nearer to becoming a pile of ashes in an urn, that my body is racing to get there.  My brain/intellect screams NO!  I’m not ready.  At this point, my body seems to be winning.  You all know me and know that I will not go until I say it’s time to go.

I don’t fear dying.  I’m rather looking forward to it so that I can find out once and for all, “Is there life after death?”  It would be great if I could figure out a way to let you all know that there is or isn’t.  I could be an irritating fly that is demanding your attention.  How I communicate with you would be a conundrum though.  Maybe I could fly on the letters of a typing keyboard?

Nah, that wouldn’t work.  You would be so busy trying to swat me that you wouldn’t know that there was a pattern to my stopping and going.   What if you swatted me before I could show you my pattern?  Then there would be a new begging question, “Is there life after death of a fly?”

Please be patient with me.  I am going to stop for now.  I will soon have enough strength to give you a decent article in here.

Hugs,

After The Storm

large Adrift sitting in a small boat in the middle of a calm ocean, I languidly lean over the side of the boat and place one of my hands in the water.  I see something swim by larger than a breadbox and I rapidly draw my hand back.  What was I thinking if I was thinking at all?  My hand and fingers could look like tasty bait for a hungry fish.

This scenario, of course, is all in my mind.  It’s my way of taking myself outdoors.  Reading and writing were my way of escaping the traumatic daily life of my young days in Chicago and I’m drawn to it once again.  There was music as well.

I speak of escape because as a shut-in, I have no other avenue of getting out of the house unless someone takes me.  Multiple Sclerosis is an anchor in many ways keeping me going around in circles and seldom allowing me to go in a straight line to places unknown for fun and adventure.

Picture yourself in the middle of the ocean again, with the sun shining down upon you, the backdrop of the city just beyond the horizon.  At first, you love being on that boat gently rocking and listening to the gentle slap of waves against each other or on the side of the boat.  When it’s time to go, you find that there is a heavy anchor that has kept you in place.  You didn’t notice it because the movement of the boat and the water gave the illusion that you were moving, as indeed you were but you were not travelling.

You notice storm clouds rapidly approaching you and the wind turns from a warm caressing touch to a cool blowing slap as your hair dances in many directions each tangle having no supervision as to which way to head.  It gets darker and rain starts pouring down.  You huddle in the boat trying to make yourself as small a target as possible when you see lightning strikes across the sky that pushed the sun out of the way behind the dark clouds.

You hang on to the sides of the boat as it bobs up and down careening wildly almost dumping you over every few seconds.  If it weren’t for the fear of falling overboard, it might have been fun.  What is the point of this story?

images-4For several weeks I have been on that boat in a storm.  Life is difficult enough for people without the anchor of Multiple Sclerosis weighing them down, but when you have MS, sometimes what seems like a warm and sunny day out actually is a blip in time that precedes the storm that is about to hit.

In the past three years, I’ve had about five or six major surgeries.  Two of them have been this year.  These surgeries have nothing to do with MS but they have a major impact on what MS does to you as a direct consequence of physical stressors in your life.

You go about your life doing the best that you can, just like everyone else despite having a disease and then out of the clear blue, a storm hits.  You can try running for cover but that only keeps you from getting wet.  It doesn’t stop the storm.  You have to wait for the storm to stop.  The storm is not waiting for you to stop hiding.

All these things that happen to all of us, whether we are prepared for it or not, have merit in the lessons they teach us.  They don’t necessarily teach us how to be better prepared for the next storm because you never know under what circumstance the sunny day turns into menacing one.

I believe that the most valuable lesson I take away from weeks like I’ve just experienced is that there is no point in panicking.  There is no point in throwing a pity party that no one will attend, or if someone does show up they won’t hang around for long.  There is also no point in longing for the hour before when you were languidly basking in the sun just as there isn’t any point in trying to look ahead to figure out when the storm will end.  I mean who can figure that out precisely?

You and I both know that there will be good days and bad days.  There will be days when you feel like a prisoner in your own home and days when you’re so happy to be out that if you could hop and skip like the little girl you once were, you would. There will be days when you’re feeling strong and days when you’re weak as a kitten.  There will be days when you feel like you’re moving ahead and building a life for yourself despite all the blips in your life and days when you feel like you’re just going around in circles.

Right now I’m fighting a heaviness inside of me.  It’s a difficult battle that hits me unexpectedly at different points in my day.  I recognize it for what it is and it’s called depression.  Thankfully, I have been on medication for this battle for many years.  I’m not ashamed to admit that I have it.  It’s common to all people with long-term illnesses.  I just chalk it up to yet another symptom to contend with.

In addition, I’ve had another surgery to fix a surgery from my recent past.  I walked around with a bag hanging out of my stomach for two weeks which was removed. Then I experienced pain in my abdomen and could not figure it out.  I struggled with this pain for two weeks before I finally saw my surgeon.  He figured out that I had fluid built up and sent me directly from his office down to get scheduled for a procedure where a bag was placed again to drain all the fluid out of me again.  A short office visit to remove staples turned into an all day affair of yet another surgical procedure.

MY TAKE ON THIS:
When you're having an ideal day, week, month keep in mind that the 
unexpected storm is just around the next corner.

No you don't live your life in fear of it, just aware of it.  You
don't fear it because when you're in a storm, you know that 
eventually it will die down and the sun will come out again.  

In regards to being housebound?  There is very little that can be done
about it.  There are always cabs, and other services available but if you're
anything like me, I personally don't like to travel with a crowd of people
where I am dependent on them getting to the bus on time or where I have to
get to the bus on time for them.  I like independence.

If you want to you can, if you don't want to, you won't.  Solve your 
problems, I mean.  It's a matter of attitude and how you want to live your
life.

I'm determined to live mine looking forward to the sun that will come out
after the storm.

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.

Meet and Greet: 8/27/16

Meet and Greet: 8/27/16

Dream Big, Dream Often

Dream-Big

It’s the Meet and Greet weekend!!

Ok so here are the rules:

  1. Leave a link to your page or post in the comments of this post.
  2. Reblog this post.  It helps you, it helps me, it helps everyone!
  3. Edit your reblog post and add tags.
  4. Feel free to leave your link multiple times!  It is okay to update your link for more exposure every day if you want.  It is up to you!

  5. Share this post on social media.  Many of my non-blogger friends love that I put the Meet n Greet on Facebook and Twitter because they find new blogs to follow.

Now that all the rules have been clearly explained get out there and Meet and Greet your tails off!

See ya on Monday!!

View original post

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!!!!!!