MS ; A pain in the ass disease in the very least

The above statement came from the surgeon that pieced my shoulder back together after my fall last year. He made that statement because my recovery from surgery has been anything but normal. I spent two days a week for the past year in physio therapy and over 16 weeks in a physio pool. To put a little perspective on this, the norm for recovery from my type of surgery is 6 to 8 weeks of physio.

MS has proved to bring its own set of challenges to physio, I have been extremely lucky to have both a surgeon and a physiotherapist that were more than willing to try new approaches to my recovery schedule.

Heat has become my nemesis now. Even a hot dinner can cause fatigue. Being immersed in a 94 degree salt water pool was initially more than a little daunting. I was assured that there was a mechanical lift available to get me out if required. The pool turned out not to be a problem. After a 1/2 hour in the pool I was not fatigued any worse than a 1/2 hour of any light activity these days. But go figure why 10 minutes outside in any temperature over 76 or 78 will get me wondering if I can make the 100 ft walk from the mailbox back to the house.

It took months to get to be able to lift my arm to chest height. Several times x rays were done to confirm  that all was well with the surgery and the healing. Under normal circumstances injections into the joint and reassessment of the surgery would be considered, but as my MS is not a known factor in the recovery process these options were held off.

Each week there was some progress, most times only a degree or two of more movement, but at least some improvement. Keeping the faith and convincing myself that any improvement was worth the effort became hard at times, but I felt if my therapist was not going to give up neither would I.
About 3 months ago my therapist had to take 3 weeks off, and we started discussing what I should be doing for those weeks and whom I would see during those weeks. I was getting more than a little tired of the 2 days each week routine and suggested maybe I could take a rest for those 3 weeks and see how my shoulder reacted. In short I did nothing for those 3 weeks, no exercise of the arm, no stretching of the joint. And low and behold I gained almost 5 degrees of movement. So I went another 4 weeks of no routines, just used my arm as best I could. and another 5 degrees of movement. Maybe it is the MS reacting to the muscle stress of the physio, maybe without the physio stress my brain has found a way to signal my muscles in a other than normal way. There in lies the "pain in the ass" of MS its not known what it does in individual instances.

So my arm is reasonable, I have about 60 or 70% of normal movement and very little strength. But I am sure the strength will get much better with time. And the movement gets better, all be it ever so slowly . So maybe I can only reach the second self with my left arm. When I look back at the pictures of my shattered arm and shoulder I can honestly say I am lucky, it could have been a lot worse.

The other effects of my MS are fast becoming a bigger pain than my arm.
I spend more time trying to remember what I am looking for than I do looking.
I take naps 3 hours after I get up in the morning.
So as not to trip over my own feet, I watch where I place each foot so intently I forget where I was going before I get there. It is like walking around in the dark, carefully placing each footstep so as not to stumble.
Walking around in the dark may actually be easier now, maybe I need to start a MS benefit column :-)
I did an earlier post on depression, but it is fast becoming the number one effect to deal with. I know the bottom is falling out when I get depressed about being depressed.
Exercise creates its own little vicious circle. Exercise brings better muscle reaction, more exercise creates more fatigue. Fatigue worsens muscle reaction, and around we go!

Learning to live with MS is hard. Not only hard for me, but hard for everyone around me. Giving into accepting the limitations MS imposes on me, without giving up is hard. Hard for those who have to accept my limitations as well. Accepting the loss of independence,  becoming a dependent is hard. Dealing with it all is overwhelming, but very much manageable when broken down and dealt with individually. Sometimes I slip and let the entirety overwhelm me. The hardest part is waiting for the time when I don't have to think about dealing with it on a daily basis, because it has become habit to deal with it and stay positive.

I try my best to believe the old adage, What dose not kill me, makes me stronger.

So my dog and I need to resume our daily conversation now.
Funny how he never forgets where we left off  :-))

Is the right thing always the right thing ?

We have all heard "Its the right thing to do" But is it always?

Is the right thing to do, to do what we perceive as expected. Is the right thing to do, to do what society, and our peers perceive as the right thing?

I mean it is the right thing to do when we find a wallet and make sure it is returned to the owner.
It is the right thing to do when we own up to mistakes we have made.
It's the right thing to do by setting good examples for our children.
It is the right thing to do to be courteous to our fellow man

But how about doing something because we don't want to hurt someone we feel to be totally innocent of the circumstances.  Doing something that sacrifices our own feelings, because we feel it is the right thing, and/or we feel our peers consider it the right thing. Does this become the right thing at our own expense?

I would like to say all, but I am not quite that optimistic, so at least most of us do not want to cause unnecessary discomfort to our friends and loved ones, or even acquaintances. We would like to have the approval of our peers. We want to be consciousness and caring human beings

So is it the right thing when we do something that restrains our own happiness and pleasure for the sake of another? Is it the right thing to forsake ourselves by doing what is perceived to be the right thing by our peers?.

Families do it an wonder how they became estranged.
Couples do it and wonder how they became distant.
Friends do it and wonder how they lost touch.

So as some one who would like to be as good a person as my dog already thinks I am. I will try to define "the right thing" to be what is right for everyone involved including myself, and be there for my friends, family and loved ones when "the right thing" hurts

A Good Cigar...

 A quote from another blogger,

"Failure has haunted me my whole life. Sitting back on it's haunches, waiting in the dark to pull me closer; waiting to breath its chloroform breath up my nose.
I make it a bigger deal than it should be. Even little things become big in my mind. One thing I've never failed at is depression."

So why is depression such a problem for most of the population, this writer included? Is it not just simple to say "thinking about these things makes me sad, so I will just not think about these things" Is that not just common sense?

Well I believe this falls into the easier said than done category.
It is truly part of our societies conditioning, we are continuously informed in some way or another that good is no reason to celebrate, good is normal, good is expected, In order to celebrate any thing good it has to transcend good into the very least great! Other wise no one is interested in hearing about something as blase as just good.

Now bad on the other hand has a completely different set of priorities. No mater how trivial or minute the bad news is. As long as it has not happened to us, we want to hear about it!! And we want to celebrate it with disgust.

Now hears the test. All of you drivers out there, do you remember the day some guy gave you the finger while driving down the road, or the guy who cut you off. or the guy who was just an idiot and should not be allowed on the road? Now you pedestrians, remember the idiot driver who splashed you while you were walking down the sidewalk.r the driver that blew the horn at you as you crossed the intersection and they were in a hurry to turn left

Now each think about the driver who slowed down to make sure they didn't splash you.r purposely stopped traffic so you could cross the road. Or how about the driver that waved you into the parking spot you were both aiming for. Or the one who stopped traffic and waved you into the lane you were trying to turn into.

Now if everyone is honest I am willing to bet it took us allot longer to remember the good Samaritan than it did to remember the bad guys. You think that could be because we celebrate the bad way more than the good, we think and talk about the bad way more than the good.

I for one am allot happier, far less depressed, when I celebrate not just the great things in my life, but the good every day things. Some days they are harder to find than the bad, but if you look hard enough they are there, and just need celebrating

Now I am going to create one of those good things, just for me. Time for a good cigar and a relaxing look back at all the good things I have to celebrate lately. Like watching a rabbit eat the garden, or a darling little girl sing just the words "Happy Birthday Gram pa" on the phone.

Cherish your good things

I ran out of spoons today :-)

I have had to borrow a lot of spoons the past couple days, so it may take a couple days to catch up :-)   in the meantime here are some quotes to ponder

I like stepping into the future. Therefore, I look for doorknobs.

Always and never are two words you should always remember never to use

Success is not final, failure is not fatal: it is the courage to continue that counts

Lust is easy.  Love is hard.  Like is most important.

There are times when two people need to step apart from one another, 

But there is no rule that says they have to turn and fire.

Compromise

Thank (put your favorite deity here) for Laptops, and computers in general.

This is hard, to try and place words on a page every day.

I just imagined how it would look if I were using a typewriter and paper! Imagine a tiny little desk in the middle of a room with a small hutch on the back of it. There is a small latticed window high on the wall in front of it letting minute beams of light through , because who would ever have time to clean it, if typing on a typewriter. Imagine the entire room, a huge room, furnished with only that tiny desk in the middle of it. The floor is non existent because it is covered with crumpled up pages waist deep. Each of those crumpled pages containing a thought or maybe even two thoughts that once written down to be seen by the light of day made no sense what so ever. Environmentalist tree huggers would be pounding at the door with pitchforks and other blunt farm tools demanding the immediate silencing, of that machine responsible for the mass destruction of the world’s forests, the typewriter.

As it is, my laptop makes it so much easier, albeit may not much easier on the environment, with all the oil consumed to provide it with power, and the more oil consumed to make all of its hundreds of plastic parts. So which is better for the environment? Replacing the plastic backspace and delete keys, or thousand of sheets of crumpled up paper? I don’t think I’ll spend much research time on this one, I just vote “replacement keys”

Now back to those one or two thoughts printed on those crumpled up pages. It has occurred to me that my definition of writing has been skewed. I have always thought that to write was to transfer the thoughts from the brain to paper in and intelligent, sensible manner as applied to the subject one would be writing about. This is just plain not true!

The brain just spews forth matter and sometimes anti matter, telling the fingers to touch the appropriate keys on the keyboard to turn that matter into printed words. The brain believes it is writing, doing great things. Things so great, that all other brains will be in awe of its immense power to produce written words. Words it believes will be saved for eternity, read by the masses for generations to come. Again Not True.

It is the eyes that turn that spewed out matter into writing. The eyes inform the brain as to the validity and comprehensibility of the printed word it created. It is the eyes decision to use the delete and backspace keys, and thus save hundreds and hundreds of trees. The eyes have the logical veto power over the brain as to what goes forth as printed matter.

But the brain is deceptive my nature, and the eyes naive, always believing what they see. So many times the brain deceives the eyes into seeing what is not there. And if it can’t cause the eyes to see what it wants them to see. It simply disbelieves the eyes until the eyes give in from fatigue. We all know the brain has stamina far greater than the entire rest of the body; it keeps going even when the rest of the body has lain down wishing only for sleep.

So I propose that great writing comes from the brain and the eyes committing to a compromising and trusting relationship to produce great printed word.

Today’s Quote

I may not have always gone where I intended to go, but I think I have always ended up where I needed to be

A little more on MS and me

The surgeon that graphed  my shoulder  back together, and installed that kewl exotic metal  in my arm, gave me a most insightful description of my MS. He said “it’s a real pain in the ass disease isn’t it”  :-)  He is one of the few specialists in the medical field I have met with a sense of humor, and a great personality! And to top it off he is a great surgeon as well.

Of course I believe his synopsis was influenced by the fact that my arm is taking way longer to recover than was expected. I know my arm recovery is directly related to my MS. I can tell when I get out of bed in the morning how well my arm is going to respond to physio, by how my legs are responding to walking that day. The good  is that, although it may be very slow, and is taking a lot of time and effort, my arm does continue to make small gains in improved mobility each week.
The ever present pain has really just melded into the background of my life with the MS pain. Both are not enough to take any more than mild medication for, but both annoy me at times.

I discovered something new for me and my MS recently. There are some theories that stress can cause or at least instigate MS attacks. Studies have not proven this, but it is one of the many theories out there brought to light by observation.

I don’t know about stress causing attacks, but it sure caused the intensifying of symptoms for me. I recently went through some major self induced stress that sent my symptoms into over drive. It caused flashes of vertigo like I have never experienced before, These flashes were not totally unlike being literally stoned. Along with the vertigo came anxiety attacks strong enough to make me paranoid. As well my leg went into hyper drive buzzing so bad I must have looked like one of those wobbly punching bag toys for kids as I was walking through the mall. A few hours later, a lot calmer, and I was back to what has become my usual. It is a little scary to wonder though, if the stress was not brought under control quickly, at some point would the symptoms persist even once the stress was relived?
The other side of this is..... which and to what extent if not all of these things were MS and which the Stress ? All in all, an experience I can do with out repeating and I will be adding “major stress” to the things to be more conscious about in the future, and try to avoid it at all costs.


MS is a pain in the ass. It is something that has no solidity. It is ever flowing and changing from day to day. It is at best unpredictable. But no matter how it affects me from one day to the next, I remind myself I am lucky. For lot of people, MS has effected their lives much worse than mine.

Let me have the Serenity to accept the things I cannot change, 

The Courage to change the things I can, 

And  most importantly the Wisdom to know the difference!

Quote of the day

«While we try to teach our children all about life, our children teach us what life is all about.»

Optimisim

 OK so the "Day" thing in the title just had to go!  I don't know what I was thinking! I am going to submit a post each day. It is just that calling them Day One, Day Two, Day Three, Day Four, was just beginning to sound like psycho babble. I don't believe I am psycho, just yet at least :-)
Of course every reader is entitled to their own opinion    :-)

So I took a test on the internet called ‘Are you Optimistic”  I am sure I could find many such tests to take on the internet and I am sure they would all give pretty much the same synopsis if I answered them all the same.  Here are the results of the one I did take:

According to your responses, you are generally the type of person who believes in the goodness of humankind. You give nearly everyone the benefit of the doubt (at least until proven wrong), and will often accept what people say and do at face value instead of making conjectures about their motives. You will at least try to find the good in even the most difficult of people, and are willing to place your faith in others. Unlike their more positive counterparts, pessimists have a lot of difficulty trusting others, believing that most, if not all people have hidden agendas. Tempered with that necessary dose of skepticism, you’re fairly trusting and accepting nature is refreshing, and likely provides you with a much more balanced and upbeat perspective overall.

Nothing surprising to me in the results, Enlightening though was my perceptions of the answers available to the questions. For almost every answer I chose there was another answer I could have chosen, depending on the time in my life and my mood. I believe my perceptions indicate I am getting more skeptical with age and experience.

This would come from experiences like those that have proven to me that not all people have ulterior motives but some most definitely do. And this experience has changed my outlook from one of all people would choose good over bad if given the choice. To one of most people would choose good, and a few choose whatever option gives themselves the most gain. 

Just one of those inevitable  facts of life.

Now I will have to ad another goal to my lists. And the goal will be to not let skepticism gain ground on my optimism. I like myself as an optimist, yes a little skepticism saves some turmoil in life. Burt skepticism is like spice in cooking, a little bit ads flavor and zest. Too much spoils the dish and just tastes bad.

So why are optimism and positive thinking not the same in my dictionary?

The short definition is in the answer to this age old question. 

"Is the glass half full or half empty?"

Optimistic answer, “the glass is half full”

Positive thinking answer, “the glass will be full again very soon”

Optimistic Positive Thinking answer " The glass is already half full, filling it to the top will be easy"

Everybody should  find at least one thing that has been great about today,
And when you do, smile at someone!

Quote of the day

"Sometimes I sit up late with my thoughts, 

reluctant to fall asleep and leave my thoughts alone by themselves."

Feel free to pass on the link to this babble should you feel inclined to enlighten someone,
Or torture someone as the case may be 

Day Three, Books !

So today my brain couldn't come up with a catchy tittle for today's blog.
Some candidates were, Books, escape for the soul, and Books, the ultimate special effects, but nothing poked my brain into saying yes that's a good title!  So "Books" it will have to be.

Why do some books stay forever in our minds? I am not talking about revolutionary books, or books that have changed the world by the authors insightful and creative thinking.I am talking about the obscure book you read, and then read again, and have since read many times. A book that no one else you know has ever heard of let alone read the cover. Why do these books take such a hold on the few and not the masses?

For me it is a book titled "The Rolling Stones" and it was written 4 years before I was born, and 10 years before Kieth Richards and Mick Jagger thought about  a rock band.


The Rolling Stones is a juvenile silence fiction novel by Robert A. Heinlein. I first read it as a early adolescent, and  early teenager. The book is about a family living on the moon, which was almost a suburb of earth. But still considered to be for the adventurous by those living on earth. I remember my fascination with the thought of traveling in space. Visiting Mars and other planets. The things to see and discover, and the people one could meet on such travels was just down right fascinating!

I looked it up on Wikipedia and the plot summary talks about the adventures of the two boys in the book, and about flat cats, and entrepreneurial spirit, and the pit falls they encounter. I still carry a mental image of a flat cat in my mind today.A most delightfully calming critter.

I believe I have read this book every 5 or 6 years since the first time, As a matter of fact it is probably time to read it again, that's why I have been thinking about it. I can answer my own question on why some books stay with us forever. The Rolling Stones for me supports so many attributes of life that I consider to be necessities of life. It stimulates the imagination, with thoughts that anything is possible, even traveling in space like we do in airplanes, and living on the moon. The book tells, that all learning is not necessarily best in a classroom, and that any subject can be fascinating if you open your mind to it. It tells of the joys and sorrows of entrepreneurship as well as the benefits it as over a conventional job.

As a pre teen and teenager I loved the book because it could fill my imagination with so many things, from the wildest thoughts of space travel to the grandiose thoughts of becoming rich and famous. Reading into my 20's and 30's was for reaffirmation. To retreat from life for a short few hours and renew the imagination so as to go forward with my current life and goals. As I have gotten older I remember reading it for escape, to indulge my imagination, so as to clear the clutter of life from my mind. To remind me that my path in life has been filled with imagination and realities that are mine alone, to be cherished.

I encourage everyone to find 'their book" Young or Old, The mind and imagination require stimulation from the written word, without it the world becomes a boring place to live.

And not everyone can come live with me on the Moon !!   :-)

Quote of the Day

"My dog and I have enjoyed many a silence together, 

a conversation always resumed exactly where left off."

Day Two, A small insight into MS

Inspired by “The Spoon Theory” I am going to put it out there, just how an average day starts for me these days.

Do not read this with pity; don’t feel sorry for me because I don’t.

I am very lucky; my life could be a lot worse

No matter what time I may have fallen asleep, (Usually some time between 2 and 4am) I wake up between 8am and 9am. Now waking up is a whole different experience than it used to be. The first thing I do is to open my eyes, sometimes they open fine but more often than not it hurts to open them for the first couple of times. Then I try and focus on the clock, again it usually takes a couple tries. 

Now I flex my fingers, on both hands. Sometimes I have to push them with the palm of my opposite hand to get them moving. It hurts but they get moving and the pain subsides. Now comes the scary part. First I move my feet, one at a time, usually there isn’t any pain at least. Now I bend my legs, all the time thinking that the odds are, one morning sometime in the future they are not going to work.

Now all seems well so its time to actually get out of bed. Half rolling into a sitting position on the side of the bed, I then stand up very slowly. Sometimes one or both legs will start buzzing. That’s a hard one to explain, as it really feels like your leg is vibrating at about 20 Hz. Once the legs settle I can shuffle off to the bathroom for the morning relief. And then back to the bedroom to get my needle, look in the book to remember where on my body is today’s injection site, and either I load the auto injector for the hard to reach places or just inject myself manually.

Now I can get dressed. Leaning against the wall, with one hand on the wall for balance, with a lot of effort one leg, then a short pause make sure I am still stable against the wall and the other leg. The shirt is less complicated and relatively normal, except for tucking it in. This depends on how flexible the hands are by this time.

So by now everything seems to be flexible and operating within semi normal ranges, its off to go down stairs. I stop at the top of the stairs, first to just make sure I can stand still and look down the stairs without feeling dizzy or unstable. Next is to check there is nothing on the stairs I might trip on. (Including the cats)  Now I think about moving my right foot to the first step look and make sure it is indeed on the step, then the left foot. If it’s a good day the left foot goes to the following step as anyone does. If it’s not a good day then both feet see each step together all the way down.

Now I head for the kitchen, on the good days I give the cats their treats, let the dog out, and start breakfast. On the not so good days I skip breakfast and head for the couch for a short rest first. It has taken the best part of an hour to get this far. You may notice I have yet to brush my hair, brush my teeth or shower. These I leave to later in the day so I don’t have to have a nap an hour after I got up.

LINK TO THE SPOON THEORY 

http://www.butyoudontlooksick.com/wpress/wp-content/uploads/2010/02/BYDLS-TheSpoonTheory.pdf

Day One, The first of many or a few

This blog will undoubtedly meander through many, many subjects. More-so from my personality than from the issues. The issues that I am sure will come to light are, Multiple Sclerosis, Relationships, Death, Grown Children, Pets, Optimism, Anger, Leukemia, Depression, Positive Thinking(yes that is different than optimism) and the list goes on. My personality will delve into any subject my brain assumes interesting.

And to those I know of whom are much, much better writers than I.......  no editing allowed  :-)

Lets start with some quotes from other people, Some are profound, some not so profound, some apply to my life, some apply to others I know and have known. But all apply to someone, somewhere I am sure.

• My goal in life is to be as good of a person my dog already thinks I am. 

•  You can as easily love without trusting as you can hug without embracing. 

•  True Love - the inexpressible comfort of feeling safe with a person - having neither to weigh thoughts nor measure words, but pouring them all right out, just as they are, chaff and grain together; certain that a faithful hand will take and sift them, keep what is worth keeping, and then with the breath of kindness blow the rest away. 

• Brick walls are there for a reason. They let you know how badly you want things

• Be yourself; everyone else is already taken.

• Reality isn't the way you wish things to be, nor the way they appear to be, but the way they actually are.

• It’s not whether you get knocked down. It’s whether you get up

• He who spends time regretting the past loses the present and risks the future.

• Never miss a good chance to shut up

• If at first you don't succeed then skydiving definitely isn't for you 

OK so enough for day one, hopefully I can muster the energy and brain power to return each day. 
Time will tell if it becomes the many or the few