On Maggie’s Pond

I’m sitting here noticing that I need to clean my keyboard.  I can do that!  I focus on what I can do and not on what I can’t do.  If I sat around bemoaning all the things that I can’t do, just give me a shovel so that I can dig a hole six feet deep that I can crawl into.  Only problem would be is how would I get the dirt filled up after I’m in the hole.  That I can’t do.

Living with Multiple Sclerosis is not a death sentence.  It is not something to despair over.  It can lead to a shorter life depending on the type of MS one has, and actually; it may lead to a shorter life for those with other variables of MS, but not by much.

What is significant about MS/Multiple Sclerosis, is all the things we can’t do as time goes by.  You don’t get a diagnosis of MS and all of a sudden you are bedridden or significantly impacted in an obvious way.  Many people have MS and still work.  Many people, inclusive of those I know; you would never be able to tell they have the disease.  Many people, including myself, have advanced into severity but still go on taking care of the house and other activities like yard work, etc.

Let me show you an example.

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I started this pond last year.  My husband dug out the slate for me and put them in piles around the hole that I dug.  My husband helped define the hole for me.

This was my baby.  It was something I wanted to do on my own so that I could feel a sense of accomplishment.  It was something I could do.  It took me nearly two years to do it, but I did it.  I carried each one of those rocks from one part of our very large yard to the pond.  Along the way, there were things I couldn’t do, and I gladly turned it over to my husband.  Although he was very concerned about my falling, which I did often, he left me alone when I wanted to do it alone.  He did put his foot down a few times and insisted I come into the house but he balanced his concern with my determination to do this.

It wasn’t easy.  It took forever and many small steps to carry stones.  I couldn’t use a big cart so I piled rocks into my shirt and carried them that way across the yard.  I averaged about three trips in an hour and the rest of the time, I laid the rocks into position.  I still have a ton of rocks to go, but at least it looks like a pond.

There were many falls, one where I had to lay there a couple of hours before help came along.  It was okay.  I turned over on my back, watched the clouds and made up a melody in my head.  When I was asked how long I had been laying there, I white lied.  What would be the point in worrying anyone when I was hurting?  The hurt did not come from the fall but from my legs, which started last year.

At that time I thought that perhaps my legs hurt because I wasn’t doing enough on my legs.  I wanted to work them out.  It didn’t work.

I focused not on building the pond, but on picking up a rock, putting it in my shirt, then picking up the next rock, and so forth.  Then I focused on the long walk back to the pond, or at least it seemed like a couple of miles.

The pond was the ultimate goal but the pond gets built by a lot of small steps.  I focused on those small steps and broke those small steps even further.  I landed up with mini steps.  Those I could do even if it took me all day to do what someone else could do in one hour.

This past weekend, I was like a child excited about going to a candy store.  We went to the pond store where I purchased six Koi fish.  I tried fish last year, but the pond’s habitat wasn’t mature enough.  I waited a lot longer before I finally deemed the pond habitable for fish.

My Take on This

Multiple Sclerosis is a disease that when you first hear the diagnosis your head spins with envisioning the changes that will happen in your life.  Yes, they are disturbing and yes, it seems calamitous.  It leads, for many of us, to debilitating lifestyle changes…gradually unless you Progressive MS.

I’ve had MS for 30 years, if not longer.  I still work around the house and in my yard.  I still walk with a cane or walker.  I am using my wheelchair a lot more frequently these days.  I have more than likely moved into progressive but I’m not asking if I have.  I don’t care to know.  It’s enough knowing that I have Congestive Heart Failure now.  That is something to worry about.  I’m trying not to.  The prognosis for that is about five to ten years, but my internist said he knows of some who have lived longer.

If one thing doesn’t get you, something else will.  It’s the nature of life.  We all die.  

It’s how we live that’s important.  It’s what we leave behind that counts.  We live on with the memories we gift people.  I concentrate on quality not quantity.  I concentrate on embracing the difficulties of the day not on defending myself from those difficulties.

Multiple Sclerosis is not a death sentence.  It is just one of those incredibly difficult and painful things that some of us are burdened with.  

I want to leave this blog behind as my gift to the MS world.  It is concise, brutally honest, happy, sad, uplifting, and depressing.  It is the whole of what MS is in “my” life.  It’s different for everyone.  In the long run, I want readers to feel that they have gained a lot of information (not the technical stuff), about what life is for one person with MS.  

My motto is “MS does not define me.  I define what MS is in my life.”

 

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Then What?

clock tickingThe night spreads its blanket over the house and the dogs have taken their places for a night’s sleep.  My husband has gone upstairs to bed.  All feels settled down and calm.  I love this feeling where I am with my man in the moon secluded while the stars twinkle around us.

I am watching the time on my computer.  Nothing to eat after midnight.  I am worried and more than a little scared.  With each tick of the clock I am drawing closer to the fact that tomorrow I will undergo yet another surgery.  This time it is for removal of 4 discs in my neck.

I am impinged.  Meaning my cervical spine is being compressed by offensive discs.  They intend to cut my neck in the front, draw aside my esophagus and anything else in the way, then uncover my spine.  The discs will be removed and then a tube will be placed where the discs once lived.  All will be well according to the surgeon’s standard, but will it?

It’s been nearly four months of agonizing pain.  Through the dawning of each day and the setting of the sun, I have lived with this pain, unrelenting and worsening as the days passed, I suffered mostly in silence.  However, there have been many days and late nights where I have succumbed to loudly screaming and giving in to the waves of tears that I have held back.

I’ve taken pain pills and waited for the wash of not caring so much about the pain.  The pain pills cut into the pain but does not take it away.

Will this surgery help my legs even though the cervical spine mostly controls the upper body?  Will I be freed from this unrelenting and excruciating pain?  Will I be able to walk with my unstable MS gait but be free of pain?  Will I not care about finding a way to sit or lay in bed where I can find some relief?   Will the pain of a surgery that takes 3-4 hours give way and give me back my freedom of knowing what it feels like to have little pain in my legs?

I have a million thoughts running through my head.  If this doesn’t work then what, I asked my MS neurologist.  He shrugged and told me to work with my pain management doctors.  I looked at him and burst into tears.  I can’t take this anymore.

I will have an EMG exam following the surgery and when I’m feeling up to it to try and isolate what nerve or nerves are being affected.  Perhaps I won’t need this painful test?

Then what?

My Take on This

There is no take on this.  It is what it is.  I can only wait and watch the clock ticking.  I have no delusion or faith that this will work.  Hope for the best?   I can’t.  I’m too tired to even try.

The clock ticks away.  I sit here with the man in the moon waiting for then what?

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.

 

 

 

TRY TO REMEMBER

Im confusedI’ve been seeing the man in the moon into the wee hours of the morning.  Every time I try to sleep, I can only do so for a couple of hours and then I’m up again.  I’m told I have very dark circles under my eyes.  I didn’t need to be told.

My mirror reflects back at me the sight of a woman who appears ill.  If I go through the whole makeup routine, then the mirror reflects back at me a woman who appears ill with too much makeup.

I have been busy with so many things that I don’t have time to think.  In fact, the actual thinking that I can do, is mostly disparate pieces of puzzles, floating around in my brain looking for another piece to lock onto to form an entire picture.  That’s not how my brain works any more.

For those of you interested, I have a favorite app that I use for doing jigsaws on the computer.  It’s called Brainsbreaker.  Click on the word and it will take you to the link.  It’s a great way of taking your mind off things.

There is not much to write about when you don’t go out.  I feel like a recluse.  Having given up my car which I regret doing, I find myself like a bird in a cage, looking forlornly out through the bars.  Even if that bird was let out, his wings have been clipped, so he can no longer fly.  If anything, he could hop around from one location to another, but he would still be a caged bird with just different cage walls to look through.

My life at home, of late, has been one of oil painting, playing games on the computer, Facebook, composing songs then painstakingly putting the notes into the score.  Then repeating the whole process when I add a new instruments to the score.

I also keep busy writing my book and in here, although it doesn’t appear that I’ve done much in here lately.

Confusion, insomnia, incontinence, tremors, spasms (spasticity), optic neuritis, falls, loss of balance, hearing problems, paresthesias, peripheral edema, incredible fatigue, chronic iron deficiency, extreme vitamin D deficiency, congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD),  allergies, and a huge seroma in my gut that will be removed in two weeks.  It’s larger than a football.  Add to that a failed carpal tunnel surgery.  I’m sure I’ve forgotten some things but you get the picture.

This is my life with MS.  My days can be nightmarish and usually, people would get their restorative sleep at night.  Oh no!  The man in the moon wants to go dancing!  I waltz away with him till I am literally drooping in his arms.  I’m sure there is a large blotch on the moon to human eyes if someone knew where to look through a telescope. That would be me in the arms of the ever present moon.  He does hide sometimes.  He has a right to his days.

I’m not complaining.  I sometimes put everything down so that I can take a critical eye to the list.  I wish it were a “To Do” list so that I could scratch things off as I heal.  No.  This list is permanently penned to my refrigerator with indelible ink.

If I complain about anything, it would be the discombobulated thinking that I live with.  I actually have a “To Do” list.  I see something that I can do and I start to do it until something else occurs to me.  So then I need to go do that.  However, before I finish that, something else pops into my head.  This goes on all day.  At the end of the day, I have all these things half finished.

Do I finish them the next day?  More than likely not.  I move on with new things that need doing which adds to the confusion in my home and in my brain.  Oftentimes I look at something and don’t know why I was doing what I was doing to it.  I think, “What in the world?”

My other chief complaint is precisely what I wrote above.  My memory.  I don’t know why it keeps playing games with me.  If it were a separate entity from me standing right in front of me, I would smack it upside its head and tell it to get its act together.

I try to remember things.  Say I’m in the bathroom and think that I need to purchase milk.  I tell myself to write it down on the pad that is on the fridge.  By the time I wash my hands and walk out the door, I have forgotten about it.  I will go to the fridge and stand there wondering why I went there.  I open the door and pull out a can of something or other to drink.  Later on in the day, I will think.  Oh I need to get milk.  The whole thing starts all over again.

The fatigue  This is too comprehensive to talk about right now.  I will tell myself to write about it.  LOL

I hope I remember.

 

 

ENABLE YOURSELF

I read your comment with interest.

It takes most people a very long time to get a diagnosis of MS.  It did me.  What’s interesting is this, what they call normal MRIs can, in fact, be abnormal ones.  It depends on who is reading them.

Have you told your testers that you want a copy of your MRI results sent to you?  I would also ask to receive a copy of the actual films, which you can get on CDs now.  I always get copies of everything from every doctor I go see.  This way, if you go see a Doctor, new or old, and they don’t have a copy of the film or the reports, you can bring yours and allow them to copy it.  Don’t ever just give it to them.  Make sure you get it back.

I used to compare my MRI films with those I found online.

The thing is, as we age, we all get lesions in our brains.  It’s the preponderance of lesions in certain areas of the brain, whether they enhance or not, OVER TIME, that eventually leads to a diagnosis of MS.  Or, if you have the right Doctor, it can also be given as a diagnosis when everything else has been ruled out.

Are you seeing a neurologist?  I hope so.  If you find a nice one, stick to them.  They will be your most helpful doctors.

I’m sorry for your anxiety over the lack of a diagnosis.  We all know what that is like.  Most of us had to wait a long time with the same results, the questions on friends and family faces.  They too start to question you.

As far as your friend on that trip, she probably did not realize how bad off you were until she spent a lot of time with you.  Sad to say, her reaction to you is quite typical of people.  Those people who reject you can be handled in one of two ways.  You can try to educate them or you can just push on and leave them behind.  By doing either one of these things, you have taken control of the situation instead of allowing the situation to take control of you and your feelings.  I believe in this case, I would just push on.  If she contacts you then that’s lovely.  If she doesn’t contact you, that’s okay as well.  Expect more of that and then you won’t be surprised or hurt.  It is the arming of yourself with knowing what happens that protects you from debilitating emotional wounds that people can inflict upon you.

Read MS Life in reverse.  Go to the earliest date and watch the progression.  You will learn a lot in here.  Comment and “like” along the way.  It helps the blog.  Also “Follow” the blog and you will receive your blog in your email.

We are here for each other.  There is no need to feel alone.  In the face of adversity, find people who are of “like” mind.  This way you become a part of a community.  It’s helpful.  Be careful where you hang out.  You don’t want to be in groups where the talk is mostly negative.  You want uplifting sites.  There is enough negativity going around.

Pity parties are okay but it gets lonely at a party where no one else wants to go.  Have your party and then leave.

My site’s byline is called “Enabled by Disability”.  Focus on what you can do instead of what you can’t do.  There is much to be done in your life, particularly since you are still young.  Recognize the good when it comes along, not the bad.  Learn to develop a protective shell around you.  Reach out but don’t be surprised if your hands are slapped away at times.  That’s okay if it happens.  It only means that they are not to be a part of your life.

Think of your disabilities as a rebirth.  An ability to rebuild your life using new tools.  Not many people are faced with what you are faced with but see it as an opportunity.  Wake up and take small steps in moving forward.

I always tell people, “If you know you have MS despite what the tests reveal, then you probably do, or even some other form of neurological disease that mimics MS.  Stop waiting for a diagnosis and live your live to its fullest despite having a neurological disease.”

In ending, I would like to use your comment as part of an E-Book that I am writing.  There is no compensation for it, but if you want, you will be added as a contributor to the book.  I won’t specify how you contributed so that people can’t pin that comment to you.  The other thing is that I can use your initials as the commentator without being a contributor to the book.  Either is fine.

If you would allow this, then I will have you sign a release form so that there is no legal problem in the future, not that I would expect there would be.

Thank you for your comment and I hope this helps.

Magdalena

 

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.

Doctor, Doctor

As I look ahead at the week before me,  I see that, as usual, it is dotted with medical appointments.  The sad part about it is that, I can’t always tell which doctor is for what. The doctor’s names get all jumbled up in my head and I have to think deeply, now what is that doctor for–my MS or for my CHF (Multiple Sclerosis and Congestive Heart Failure respectively)?  Another sad part about it is that, for the most part, these become occasions much like an outing to me.  Why?  Well let’s get back to the topic of what this site is about.  MS Life.

A life with Multiple Sclerosis is not all that different than a life without it, if you want my two cents worth.  Whoa!  I can hear you yelling at me.  Hang on a bit and I’ll explain myself.

Come on now.  To the world at large, unless we are obviously wheelchair bound; we don’t look like there is anything wrong with us, sitting still that is.  Me, it would be a bit different because I hang down to the right, meaning my head and body slouch down on the right side.  This isn’t always the case.  When I get my Botox injection every three months, I can almost look normal standing or sitting.  It doesn’t help that I have ACH (Arnold Chiari Malformation), as well.  They had to remove several vertebrae in my neck.  I slump because of that as well.

Many in wheelchairs aren’t glaringly disabled.  Right?  We have to have them.  I own one.  I use it whenever I know I have to walk around for a long time, or go on trips.  People don’t know that we can’t walk a straight line or that the fatigue that sets in is like we’ve just been saddled with two blocks of cement around our ankles, prohibiting us from walking more than a few steps.

What about our “drop foot“?  I know that at my worst, I actually was knocking myself right off my feet because my feet were always catching on something that tripped me up.  I should wear my orthotics but I’m in need of new ones.

We don’t present as disabled people to the outside world.  It’s an uneducated public that we contend with.  Still, we go about our business just like anyone else despite extreme fatigue, multiple paresthesias, pain (yes there is pain with MS), and numerous other problems including incontinence.  Most of the things we struggle with aren’t glaringly obvious to the world-at-large.  We go about our day and not many people will know that we are ill so that’s where my “two cents’ comment above came from.

Life with MS IS not a normal life at all!  We just try not to shove it down anyone’s throats. We are polite about it.

  • We smile, maybe too much.
  • We laugh, maybe too loud and too often.
  • We are reliable, oftentimes when we should be in bed.
  • We run our households, because there is no one else to run it for us.
  • We look great, thanks to visits to salons or nail places.
  • We volunteer and step up to the plate, even though people won’t do that for us.
  • We create and work, like others.
  • We are moms and dads to our children.
  • We are husbands and wives and try like heck to please each other.
  • We try to keep an even temperament, even though we want to scream and yell at the world.
  • We are charismatic and charming, even though we are weeping inside and craving solitude.

Getting back to my original point about doctor visits becoming occasions for me.

There is such a war that goes on every day in our lives for both healthy and disabled individuals.  It becomes more intense for the disabled.  (I HATE using that word “disabled” but for lack of another one that describes our daily lives, it’s the best one to use.)  We appear one way but our lives are significantly different than the book cover we wear.   It’s difficult to explain what I’m trying to get across.

You want to go out, but then you don’t.  You want to have sex, but then…ugh.  You want to get up and get dressed.  Hours later you’re still in your pj’s.  If you look at the bullet list above you get the idea.  You aspire to do it all and yet you don’t give a fuck if you don’t any of them at all.

We are inconsistent!!!  We are consistent in our desires however.  Think about it.  Let’s say you have a terrible flu.  You have a fever.  You feel hot then you have the shivers.  You want to sleep but then you want to get out of bed.  You want to clean yourself up but the thought of jumping into the shower seems like so much effort.  You want to clean the house because it’s a pig sty, but you snuggle under the blankets and go back to sleep.  Blah, blah, blah.

This is our life.  Life with MS.  24/7, 365 days of the years!  No getting away from it.  It is what is is.

Going out to see my doctors?  Hey, it could be great fun or it could be, “I think I’ll call and cancel.  Now let’s see.  What excuse did I use last time?”

A Reminder to Self

ratty-old-booksSometimes you meet someone and for some inexplicable reason, you click with that person.  Has that ever happened to you?  It doesn’t matter whether they have Multiple Sclerosis or not.  In the world of mutual admiration, illness takes a back seat.

At the same time, sometimes you meet someone and for some reason they rub you the wrong way.  Getting to know them better, you realize that what you first felt is still how you feel weeks or months later.  Has that ever happened to you?

Then there are strangers whom you haven’t met.  You know what I mean?  For instance, people walking towards you on the sidewalk.  You smile at them and they don’t smile back?  You’ve seen them.  I’m sure you have.  Or are you the type of person that doesn’t smile at strangers?  I smile at them all the time, when I’m out that is, which isn’t very often.  These people look at you and they will react one way or another.

It is evident that something is wrong with you.  Either you are walking with a cane, leaning on someone’s arm, in a wheelchair, or walking like you’re drunk and hanging on the wall of a building.  I know you understand all these scenarios.

I smile.  It’s simply my nature to smile when I catch someone’s eyes.  That’s a weird expression, isn’t it?  (Catch someone’s eyes.)

So okay, I smile at people and some will smile back and others won’t.  Some people will even respond to your smile by uttering a greeting of one kind or another such as, “Good morning.”  Other’s make a point of trying not to look at you.  You can see them glance your way, and then they quickly avert their eyes to something else.  Still there are others who don’t look up at all.  They resolutely stare down at their feet as they walk.

Sometimes the people that you meet have a predetermined impression about you based on your outward appearance.  Aren’t we all guilty of that?  The color of your skin, how fat or skinny you are, tall or short, the way you walk and talk, their perceived intellect of you, pretty or ugly, and the list goes on.  All of these values that people judge each other are subjective, meaning that it is an individual’s perception of these values.

So what am I going on and on about?  I’m not sure!!!  Let me try and remember.  You know what this is like.  Sheesh!

Okay, I’m back.  Have to type fast before it runs away from me again to hide in the dark recesses of my mind, as though playing hide-and-seek with me.

I’m addressing how we react to people when we first see each other and the powerful impressions that are imprinted in heads.  Because of those impressions, we make a value judgement.  Right?

This is highly unlikely with people with MS (Multiple Sclerosis) since many of us are  in wheelchairs, but it’s for the others who read this blog as well.  Then again, some of us with MS also think this way.  Think about it.  We see someone in a wheelchair coming towards us.  Do we say hello or not?  What if the person in the wheelchair is hanging over the side (exaggeration here) and drooling?  Were we going to say hi but changed our minds?  Why did we change our mind? We probably made a judgement decision.  We may not be aware that we did, but we probably did.

We complain about people judging us but I bet if you analyze yourself, you too are judging others.  Practice what you preach?  Yes, I think so.  I know that I am guilty of it but if I become aware that I’m doing it, I make an immediate attitude adjustment or at least try to.

I don’t want people judging me because the symptoms of Multiple Sclerosis can be very obvious, as in my case.  What right do I have to judge others whether I’m in a wheelchair or not?

Being ill does not give us justification to throw away decent human principles.  Having Multiple Sclerosis or any other disease does not give us the right to expect more from society at large than when we ordinarily would expect to receive.  Now I’m talking respect and moral issues.  What’s that old saying by ???  I know it’s in the Bible but it’s in other places as well, even older than the Bible.

“The Golden Rule or law of reciprocity is the principle of treating others as one would wish to be treated oneself. It is a maxim of altruism seen in many human religions and human cultures.[1][2] The maxim may appear as either a positive or negative injunction governing conduct: ” (I looked this up in Wiki.)

So let’s not kid ourselves.  If you want to be treated with kindness, then be kind.  If you want that smile when you walk down the street, smile at them.  If you don’t want others to treat you with disdain, don’t do it to others.

If you expect more than what you give, it ain’t gonna happen.  I’ve found the opposite to be true.  If you give more than what you receive,  oftentimes you are met with disappointment.  That’s no reason to clump people into a Rolodex file under “people I don’t like”.

A good thing we can do for ourselves in every day living is to treat others how we would like to be treated.  It’s difficult but it’s a positive thing to do and it’s medicinal.  Don’t fill your heart with bitterness towards others who treat us unkind.  Instead treat others who are unkind as if they have a disease and they need help!  Then give them the attention that you would like to receive as an ill person.  Remember that what you give is what you’ll get, if not in this world in some other world.

MY TAKE ON THIS:
I don’t know what got into me to write the above.  I think it’s because we went out the other day and I encountered two different types of people.  One didn’t meet my eyes, another did and smiled.  There was another person, now that I think about it, who just stared down at the ground.  I felt sorry for them.
My first impulse was to feel indignant at the person who saw me but didn’t smile and the other person who saw me then glanced away.  Then I got to thinking about why I felt this way.  I suppose I’m telling you what I told myself when I hollered at myself inside my head.  I do that a lot.  Holler at me inside my head.
So take this particular blog for what it is.  A reminder to self to be nicer to people and not to expect special treatment just because I’m ill–and not to judge people by their cover because I don’t want them judging me either.

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?