My Husband’s Point of View

Today’s blog is a little different.  My husband brought me a piece of paper which he had written these thoughts on.  I want to share them with you.  (He asked me to “edit” them and word them better than he did, but I didn’t change a thing!)

“A Good Attitude Goes A Long Way”

“From a husband’s point of view:  I’ve seen my wife with:  back pain (hurting and hugs); leg pain (hurting and buzzing); arm pain (hurting and buzzing); head pain (lightning bolts); face pain (tingling and hurting); fatigue (beat down); depression (tired of being tired); falling and bouncing off the furniture; and all kinds of MS problems.

I have never met anyone in my life who I admire more than my wife.  I see her with her everyday struggles.  I see her down more than she is up.  But I have never seen anyone that has a better attitude than she does (no one).

I see God in my wife every day.  I draw strength from her broken body every day.  Watching her struggles makes me want to be the best I can be for her every day of my life. 

I search the MS web sites each day to find ways to help her.  I also draw strength from all the MS family.  My hat is off to all of you.  I hope no one takes MS lightly.  This is from a husband who has seen first-hand what MS can do to people.

My wife and I are still looking up.  We know in God’s timing, He will rescue us from the domain of darkness and bring us into His marvelous light.

Remember, a good attitude goes a long way, especially on what seems like a dark and dreary road.”

Am I blessed to have this man for a husband or what??!!!  I feel very humbled by his words.

Each time I write this blog I try to pass along a little knowledge about MS to those who read it but don’t have this disease.  I also try to end it on a humorous note to take a little of the sting away from the harshness of our everyday lives.

Today, however, I can’t think of a thing witty or funny!  I just want to thank God for my husband and all my MS family.  Without each of us, none of us would have the power and strength to come through this with the upbeat, loving attitude that we share!

Spell It Like It Is

Have you ever noticed that so many things are spelled so weirdly?  Take bouquet for instance.  If I spell it like it sounds to me, it would be boo-kay.  What would be wrong with that?  I realize that people in different parts of this country pronounce things a little differently, but not THAT different!

So much of our language is derived from French, Latin, German, and many other languages.  That is fine.  But why can’t we spell them to suit our way of speaking instead of theirs?  Makes no sense to me.

What has this got to do with MS?  MS is MS no matter what most doctors think about it or want to call it.  Those of us suffering with the different aspects of the disease don’t care what type they call it or even IF they call it by a certain name.  It feels like it feels no matter the name.

The Mayo Clinic website says there are four types of MS: relapsing-remitting (RRMS), secondary-progressive (SPMS), primary-progressive (PPMS), and progressive-relapsing (PRMS).  If you read the descriptions of each type, you will notice that all involve a progression of the disease over years.  It does not go away entirely no matter what type you have.

Most of us have a multitude of symptoms ranging from fatigue, pain, paralysis, blindness and cognition problems.  (I wanted to say cognition malfunction, which is what I have!)  Like many other diseases, there are nearly as many different symptoms as there are people who have them.  Most have multiple symptoms and those may be different on any given day.  Sometimes the symptoms change from one hour to the next.  Getting used to a set of problems is not an option with this disease.

Multiple means having or involving several parts, elements, or members. Sclerosis, in medical terminology, is defined as a condition in which the organs which are within the nervous system of the human body, particularly the brain and the spinal cord, harden. Sclerosis is the name of the condition which results from the degeneration of such elements of the nervous system as the myelin sheath. Sclerosis is characterized by the hardening of the tissues of the nervous system due to the inflammation of diseases.

The word sclerosis is derived from the Greek word skleros, which means hard. MS is usually diagnosed by an MRI of the brain. Hey……….is somebody trying to tell us we are hard-headed??

Regular, Premium or Diesel

Have you noticed that gas prices are out of sight?! When I was young, gas was priced under a dollar a gallon!  We are lucky to find it under four dollars a gallon these days.

It is a shame that science has not found a way to refuel us when we are running low on energy.  Most of us with MS have a problem with fatigue.  In fact, one of the biggest issues with MS is not having the energy to do much of anything.  The smallest exertion  causes us to have to rest and hope that we will re-charge enough to do something else.

According to Web MD, 80% of people with MS have fatigue. MS-related fatigue tends to get worse as the day goes on, is often aggravated by heat and humidity, and comes on more easily and suddenly than normal fatigue.  Medically speaking, fatigue is not the same thing as tiredness. Tiredness happens to everyone -- it is an expected feeling after certain activities or at the end of the day. Usually you know why you are tired and a good night's sleep solves the problem.  Fatigue is a daily lack of energy; unusual or excessive whole-body tiredness not relieved by sleep. It can be acute (lasting a month or less) or chronic (lasting from one to six months or longer). Fatigue can prevent a person from functioning normally and affects a person's quality of life.

Hey, we didn’t need a website to tell us that, did we?!!

Many people with MS (as well as many other diseases/ailments) are called lazy and given grief by those who don’t understand the disease.  It can make us feel very unproductive and useless, even without all the comments that those around us may be giving us.  Many in MS groups have a terrible problem with depression because not only do THEY feel useless, but they are told this by the ones they love and cherish.

I know that most people have no clue what we go through with fatigue.  It is so far beyond “being tired” all the time.  Every step is a challenge and every movement is a challenge during the times when fatigue is at its worst. 

Many people fall during these times trying to overextend themselves to either please others or to make themselves feel useful.  Believe me, it is not worth it.  I have fallen and broken my leg……and it WAS NOT fun!!

Low self esteem can cause us to do things that we normally would not try to do.  Encouraging others on MS sites is a wonderful goal to set for ourselves.  Letting other MSers know that it is OK to let their bodies tell them when and when not to do things can help someone make the right choices.  When those Msers that have no one but us to encourage them and love them hear these things from us, it often means the difference in them making “smart” decisions or making dangerous decisions.  Make a point in your daily activities to go on one of these sites and befriend someone who is lonely and struggling.  There are many out there and often a kind word from someone who shares their problems is all they need to go on with their life.

Also, if you know any scientist or physician interested in developing a substitute fuel for energy, send them our way……….I prefer some premium octane if you please……….but most days would gladly settle for regular!!!

Bobby Sox and Poodle Skirts

Actually, bobby sox and poodle skirts were a little before my time, but I do remember peace signs and psychedelic rock! 

Most of us with debilitating diseases, injuries or other handicaps sometimes long for the good old days.  I often think of the times when I could go dancing, running or shopping without any cares.  It seems like a long time ago.

Sometimes, if we dwell on them, we get into a “blue funk”.  Depression sets in and we lose the happiness that we could have if we got off our pity pots.  As I have admitted in earlier blogs, I have a really used pity pot and get on it at times.  It is not a place I try to visit often or stay for any length of time, though.

Although things have improved as far as trying to accommodate those of us that have disabilities, there is much still to be done.  A lot of what really bothers me is the attitude of a lot of people.

The “walk a mile in my shoes” saying comes to mind when people stare at us.  If they only knew how much we would trade just a few moments of “normal” with them. 

When I was young, manners were strictly enforced by any adult in the area.  A child could be disciplined by the closest adult to them, not just their parents.  In this day and time, if you were to try and calm a child, even your own, you can be arrested.  It is so sad to see our world coming to this.

But, don’t get me wrong.  There are many parents, including my own, who carried the discipline thing way out of proportion.  I am NOT in any way, shape or form, advocating punishing a child to the point of harm.  But, a few manners would be a nice change for some children, as well as adults.

It really bothers me when people stop and stare at someone who is having a hard time walking, talking or doing something that other people consider an easy task.  Those of us that have some bad days and can’t function normally at times are aware of our problems and really do not need for others to make us more conscientious of them.

Oh how I long for the good old days

When being romantic, we walked hand in hand

Through leaf covered forests

Over white grains of sand.

When the world was so innocent

We were young and naïve

When goodness and truth

Were in what we believed.

When the simple things

Were what we strived for and got

When COKE went with COLA

And PAN went with POT!! J

Phobias

The Mayo Clinic describes phobias as an overwhelming and unreasonable fear of an object or situation that poses little real danger. Unlike the brief anxiety most people feel when they give a speech or take a test, a phobia is long-lasting, causes intense physical and psychological reactions, and can affect your ability to function normally at work or in social settings. I totally agree with this description!

Most of us have a phobia or two in our lives.  I have several, the two most intense ones being fear of heights and storms.  I have no idea why heights scare me so much.  Storms, though, I think I do.  I have been in tornados and went from the first puff of wind to the last of Hurricane Hugo.  If you have never experienced either of them first hand, the fear of something like that happening again never leaves you.  Don’t take this wrong, but seeing a tornado or hurricane on The Weather Channel cannot come close to letting you know what being in the real thing is like!

I just finished reading a really good book titled “Fear Itself” by Jonathan Nasaw.  If you, like me, love a good thriller, this book is a definite read.

One of the special things about this story is that a main character is an FBI agent dealing with MS.  Mr. Nasaw shows great insight into our struggles with this disease.  The character’s problems of dealing with the ups and downs of MS, while trying to hold onto her job, is very well written into the story.  If you have not read this book, I highly recommend it, both for the MS connection and the story itself.

One of the other things about this book is Mr. Nasaw’s villain, Simon.  Simon feeds off of the phobias of his victims.  It made me think about all the days in our lives we waste worrying about things that will probably never happen.

Although everyone has phobias of some sort, those of us with a chronic disease, impairment or illness often let these keep us from enjoying our lives to the fullest.   When we are diagnosed with one of these, most of us jump online and read as much as we can find about our particular problem.  Usually, all we find is doom and gloom.  These findings can often make us develop a type of phobia about our condition.  Many times, these self-induced phobias lead to severe depression and loss of enjoyment of the lives we have.  Many have alienated themselves from their families and friends.  Others have sunk so deeply into their phobias that they feel no hope and take their own lives. 

Although our struggles are hard and it often seems that for every step we move forward, we take two backwards, life is still good.  There are so many things that even people with the most harsh limitations can enjoy. 

I have been very fortunate to have a network of supporters in my family, friends and my online MS family.  Even though I do get down on my pity pot sometimes, I never stay for any length of time because of this support.

It would be nice if there was a pill we could take to wash away all the phobias we have.  But, until that day arrives, I will definitely stay off a mountain top during a thunderstorm! J

In The Good Old Summertime

According to the National MS Society, people with multiple sclerosis often report worse symptoms when the weather is hot. A recent study concludes that hot weather may also worsen the ability to perform mental tasks in some people with MS.   Warmer weather tends to worsen many people’s neurological symptoms of MS. Recent research also suggests that relapses are more likely to occur in warmer months, and some people may have more MRI-detected active MS brain lesions during these months. Many people with MS experience a temporary worsening of their symptoms when the weather is very hot or humid or they run a fever, sunbathe, get overheated from exercise, or take very hot showers or baths. For example, some people notice that their vision becomes blurred when they get overheated—a phenomenon known as Uhthoff's sign. These temporary changes can result from even a very slight elevation in core body temperature (one-quarter to one-half of a degree) because an elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses.

I don’t know about you, but these are “duh” statements!  Those of us with MS KNOW this and don’t need a bunch of studies performed to come to this conclusion.  When the weather starts getting warmer, we stay inside or pay the price.

Now I know that, like everything else in the world, there are those with MS that heat does not affect like it does some of us.  There are those on several MS sites that talk about lying out in the sun and getting a tan.  Many go on long bike rides, run in races and do many other things in the summertime.  Most of us don’t have that option, but are thankful that some do.

If I take a hot shower, I am so weak I can barely dry off.  If I get out in the sun over 3 or 4 minutes, I am weak, nauseated and often sick for several days.  Most of us with MS have a terrible time when the temperatures start getting warm and cannot deal with heat even in small doses.

Several companies have developed cooling vests, hats, wrist and head bands and such to help us cope when we have to be outside in warm weather.  Although skeptical of these things, I have tried them and they really work!  I still can’t be out long in the heat, but when I have to be outside, they help keep me from becoming really sick and too weak to function.

As it is, me and most of my MS family will have to forego lying on the beach and getting a tan.  We won’t be running in summer races or bicycling down the road in July.  But we will still enjoy the day and the beautiful summer sunshine …….we will just do it from the comfort of our homes with the a/c wide open!

Inventors Wanted!

My husband and I are often at stores that sell electronics and it is so fascinating to see all the gadgets that are on the market.  Many of them are so helpful to those of us who have problems with everyday activities.

I really like the programs for computers.  There is a lady in my local MS Chapter who is in a wheelchair, cannot move her hands and legs, but is on the computer a lot.  She uses one of those programs where she speaks into a microphone and it types what she is saying onto her computer.  I think that is awesome!  There are several different kinds of programs that do this and should be one that would suit anyone who has the same type problems what she does.

I use that example because I am a computer geek “wannabe”!  I love messing around on the computer and am totally fascinated at all the things one can do with one.  Not only is it educational, but I really enjoy playing games, writing this blog and staying in touch with people I would not otherwise have gotten to know.  It has really opened up the world for those of us that are limited in our mobility and opportunity to travel.

The problem I have some days, as well as many other MSers, is that my hands and fingers do not want to cooperate with what I am trying to do.  Some days I am fine and can function pretty well. Other days I cannot pick up and pen and write for any amount of trying.  I have not written a check in over a year because the last time I tried, I just scribbled and could not get my hand to do what my brain was telling it to.

There are also days that my words do not come out of my mouth correctly.  On those days, I don’t think those “talking” programs would help.  I don’t think they understand gibberish!

So many fantastic things have been invented to help with “miss functioning” bodies.  There are still many more that would be a great help to those of us struggling to function in the everyday world.  I think some highly intelligent person could invent a program that would read out minds and perform the function for us on those days when our speech and hands are not working properly.

Of course, that DOES lead to the problem where many days my brain is not working any better than the rest of me and who knows what the program would end up doing!!  I might end up with a lot of “that does not compute”!!! J

Mind Meld

If you have ever watched Star Trek, you will know that Vulcans can do something called a mind meld.  According to the Star Trek Database, a "mind-meld" is a technique for sharing thoughts, experiences, memories, and knowledge with another individual. It is a touch technique that allows a Vulcan to merge his or her mind with the essence of another's mind purely by using specialized contact fingertip-points--in a humanoid, usually around the targeted partner's skull temples. Hypnosis-like relaxation and a rhythmic verbal device, such as "My mind to your mind, my thoughts to your thoughts," are often used to perform this action.

Many of us with MS have a battle with saying words from time to time.  The word will be in our thoughts, but it will not come out of our mouth as a “word”.  I can hear myself speaking gibberish sometimes, much like someone who has had a stroke.  It is a very frustrating experience.

Speech disorders are fairly common in MS. Speech patterns are controlled by many areas in the brain, especially the brainstem. Lesions (damaged areas) in different parts of the brain can cause several types of changes in normal speech patterns. They range from mild difficulties to severe problems that make it difficult to speak and be understood. Medically, speech disorders are called dysarthrias.

One pattern that is commonly associated with MS is so-called scanning speech. Scanning dysarthria produces speech in which the normal "melody" or speech pattern is disrupted, with abnormally long pauses between words or individual syllables of words.  People with MS may also slur words. This is usually the result of weakness and/or incoordination of the muscles of the tongue, lips, cheeks and mouth. Other speech problems include nasal speech, which sounds as though the person has a cold or nasal obstruction.

I am wondering if we could get Mr. Spock to teach us to mind meld.  It would be great not to have to try and make someone understand what you were trying to say, knowing the words were not going to come out right no matter how hard you tried.  There is only one problem with this; usually when I cannot speak correctly, I am not thinking correctly either.  I can only imagine what a muddled mess someone who was reading my brain would see!!

Award!!!

A great award -- means "beloved!"

 

Thank you, Muffie!!! I am honored to get this!!!!

Let’s Make A Deal!

According to Wikipedia, Let's Make a Deal is a television game show which originated in the United States and has since been produced in many countries throughout the world. The show is based around deals offered to members of the audience by the host. The traders usually have to weigh the possibility of an offer being for a valuable prize, or an undesirable item, referred to as a "Zonk". Let's Make a Deal is also known for the various unusual and crazy costumes worn by audience members, who dressed up that way in order to increase their chances of being selected as a trader.

Although there are various types of mini-games played on the show, one of the most famous was the final game where a contestant would chose a door. The Big Deal involves three doors, famously known as "Door #1", "Door #2", and "Door #3", each of which contains a prize or prize package. In the two-trader format used until 2003, the top winner of the two was offered the first choice of a door, and the second trader was then offered a choice of the two remaining doors. In the one-trader format used since 2009, the trader simply selects a door.

The show has quite a lot of fans, since it has been on since 1963.  Many people have won some really good prizes and had a lot of fun as contestants on the show.

I like the concept of having a choice of what I want.  With MS, we don’t have a choice.  We have a lot of variety, but it is not at our own choosing.  We have symptoms ranging from walking problems to thinking problems to visual problems to pain problems and on and on.  None of these are things we choose.......MS does the choosing for us.

Most of the time, MS does not choose just one problem to dish out to us but gives us a variety of problems all at one time.  Dealing with one thing at a time may not be the perfect solution to our problems, but it would surely be easier than facing a multitude of them all at once.

Sometimes I think I would like to have the option of choosing what would be my problem for the day.   Most of the time, I realize that none of them are good choices. What may seem to me to be the lesser of several evils may turn out to be the worst symptom I have ever had.  Other people may SEEM to be having an easier time with their MS than we are, but as the saying goes, “walk a mile in their shoes” and see how it feels.  I doubt we would want to.

So, having said all that, if I am given the choice, I choose Door #4……NONE OF THE ABOVE!!! J

The Frankenstein Complex

According to the Multiple Sclerosis International Federation, spasticity means stiffness. When demyelination occurs in the nerves that regulate muscle tone, the result often is stiffness or spasticity. Because there are many nerves in the brain and spinal cord that regulate movement, spasticity is a common problem in Multiple Sclerosis (MS). The stiffness often is minimal and not bothersome. In fact, a person sometimes needs the stiffness provided by spasticity to stand or pivot. At other times stiffness may become painful and may interfere with performance activities of daily living. Spasticity tends to occur most frequently in a specific group of muscles that are responsible for maintaining upright posture. These muscles are called antigravity or postural muscles. They include the muscles of the calf (gastrocnemius), thigh (quadriceps), buttock (gluteus maximus), groin (adductor), and occasionally the back (erector spinae). When spasticity is present, the increased stiffness in the muscles means that a great deal of energy is required to perform daily activities.

Do you ever feel like you look like Frankenstein trying to walk?  I do. I remember watching the original 1931 Frankenstein movie on TV when I was a little girl.  Boris Karloff played Frankenstein’s monster.  Back when that movie was filmed, actors and actresses “overplayed” a lot of parts and so did Karloff when he performed as the monster.  He was very stiff and flailed his arms a lot. When I was a very young child, the movie was very scary.

When those of us with MS have those “Frankenstein” moments, it is still scary.  It is hard to balance, painful and easy to fall during those times.  Although my spasticity is not an everyday occurrence, it does happen quite often.  Just walking across the room becomes a tightrope act and often leads to sitting down and making the best of a bad situation.

There are medications that doctors prescribe for this condition such as Valium and clonazepam.  Although these may help, most of us are hesitant to take them because (1) they often become habit forming and (2) they make us feel woozy and in a dazed state.  Many times we have to resort to taking these types of medications, but only if the situation becomes the norm rather than sporadic.

Myself, I think Frankenstein was a vastly misunderstood character.  If you watch the 1931 version, he was a kind creature who was unjustly accused because he was a “monster”, which was not his fault.  Many times those of us with MS are often looked on as “freakish”, “different”, “odd”, and such.  We may not be able to do anything permanent to calm  our “monster”, but some days we can tame him a little a make him move to OUR beat!!!

Page Not Found

For quite a few years I was a paralegal.  Before computers were the norm in most offices, information was kept in folders in file cabinets.  When we needed to find something, you had to be able to go to it and retrieve it immediately.  Not finding it was NOT an option!

After computers came along, all the information was stored at your fingertips.  Not finding what you needed STILL was not an option.  You had to be able to find what was needed and retrieve it immediately.

I love surfing the web and trying to learn new things.  Often, while I am looking for something, something else will catch my attention and I will end up reading something that had nothing to do with my initial search.  Bumbling along and not looking for anything specific is OK in the world I am in now.  It is not usually critical that I find a specific item.

It does irritate me a little when I click on something and it says “Page Not Found”.  I realize there are trillions of billions of pieces of information on the web and not being able to instantly find something should not be uncommon.  It is amazing that it finds as much as it does!

My biggest problem is “Page Not Found” in my brain.  Many times I am trying to tell someone something, and the words will not form in my brain.  Scientist say that the average person usually uses only around 3% of their brain capacity.  My 3% sometimes gets lost in the shuffle!

Cognition is a major problem that those of us with MS face.  By definition, cognition is the mental process by which we remember, produce and understand language, solve problems and make decisions.  When cognition is short-circuited, as it is with MS, these tasks that most people do every day without thinking about are lost to us.

When I am having trouble remembering things or getting the right words out, I try to think of things as being in a filing cabinet.  I look through each one and try to find what I need to form my thoughts.  Many times, that file seems to be lost.  I need to look for a file I’ve been searching for a long time.  I think it is in the back corner of my storage area in a cabinet I haven’t looked in lately.  Who knows what I might find there………I hope it’s something good! J

The Weeping Willow

She stands among the towering oak

The pines and spruce so tall,

They bunch together in the grove

And offer shade to all.

In Spring some flower, showering the earth

With colors bold and pure

In Fall some lose their flowery coats

To shiver and endure.

Some legends say that fairies hide

Beneath her delicate limbs

Some say that it is leprechauns

Who scamper, skip and skim.

Some say the ancient Hebrews sang

And played their harps so fine

And hung them in their branches when

Their songs they left behind.

I wonder if the willow tree

Feels she’s had too much to bear

Of people passing beneath her limbs

To leave their woes and cares.

Sometimes I feel just like that willow tree

When emotions carry me along

No matter how I fight them back

They seem so tough and strong.

I cry just lying on my bed

Or sitting on my chair

Although I search my brain for fault

They came from out of nowhere.

I sometimes really have to admit

Depression plays a key

I am sad and moody and teary

When I really want to be cheery.

I know sometimes MS causes me

To be someone I’m not

A shadow of my former self

Discouraged and distraught.

But I also have a strength inside

That often helps me win

The battle of depression

From that glow of God within.

He helps me fight my battles

Gives me strength when I have none

He is my knight in shining armor

He will fight this mighty MS dragon!

Jumping Out Of My Skin

I have been reading a lot of articles on Startles Disease. In a Practical Neurology report, the following was stated:  “We are all personally familiar with the startle response – the abrupt ‘start’ or ‘jump’ in response to sudden unexpected stimuli, like a loud noise. This startle is a non-suppressible reflex, which alerts us to abrupt changes in our environment that may threaten our safety. It is a reflex with survival value. But, if excessive or too easily triggered, it can interfere with daily functioning, or cause falls or injuries, and it is then a pathological response. The startle reflex is thought to be mediated at the level of the midbrain or below.  The intensity of the startle reflex in humans varies between individuals and is increased by anxiety, fatigue or emotion (consider your response to a door slamming as you are watching a late night horror movie).”

Many of us with MS have a type of Startles Disease.  Since it is neurological in cause, I see no conflict with that diagnosis.  It is a very disturbing symptom and, as the article above states, it can cause us to fall and hurt ourselves.

One of the problems I have with startling so intensely is that it causes my heart to race and my body to nearly go limp.  I feel totally drained and frightened.  Even when I know something is going to happen, a noise, movement or light can trigger this response.  I have mentioned this to my neurologist but he just shrugs it off.  Some others of you have mentioned also having this problem with your doctor.

Most people jump when something happens unexpectedly.  That is normal.  Those of us that “startle” do so to the extreme.  A cough, light coming on, sneeze or other normal occurrence may cause us to react in an extreme manner.  It is very disheartening.

My husband is a very handy guy.  He has built a workshop and a gazebo in our backyard and a really nice patio on the back of our house.  He was not satisfied with the patio so he screened it in.  During the first summer after he had built it, we knew that I would not be able to enjoy it.  The heat was beating me up too bad.  So, he closed it in and made a room out of it.  It is one of my favorite places in the house.  We have a nice wooden bench, woodstove, rocking chair and swing in that room.

Unfortunately, over the last few years, there is a robin that cannot get through her beautiful little head that she cannot build a nest in the stovepipe.  She will peck and peck on it trying to get into it.  I wish I could tell her that it is not possible so she would not expend so much energy on that project.

What has this to do with startles?  When we are in the room, and our robin friend begins to peck on that pipe, I nearly jump out of my skin.  Even though I see her fly up there and know she is going to do it, it does not stop the startle reflex.

Unfortunately, it is not possible to know in advance every little thing that will happen.  Actually, we would probably not want to know………..but I sure would like to be able to control this jumpy, nervous, startling reflex I have. I don’t really think it is actually possible to jump out of your skin, although I DO think I have tried it several times! J

Just Words…….

I love watching movies.  Mysteries are my favorite.  I used to like horror movies (my Daddy’s favorite!), but the ones they make now are just blood and gore, so I quit watching them.  A good old haunted house movie seems to be a thing of the past.

The problem with watching them now is that I often lose track of the dialog.  As my MS progresses, I notice that I have a lot of problems keeping up with conversations.  My husband and I really enjoy discussing things with each other.  He will often stop talking, smile, and say “you are losing the conversation, aren’t you?”  I guess the blank look on my face is a dead give away?!

Cognitive problems are one of the big problems with MS.  I have read a lot of things relating to this and know, myself, that it is an issue that seems to gradually get worse and worse.  There are some highly intelligent people who have MS and can no longer do the things they need to do to keep their jobs.  I read about one lady who was the head of a marketing firm who could no longer read and understand the reports she was given each day at work.  She also was supposed to lead the weekly meetings and could no longer keep her thoughts together long enough to do so.  It was really sad.

The really good thing about writing this blog is that I can do it at my own speed.  If I lose my train of thought, I can stop and begin again when (and if!) it comes back.  Many MSers have to quit their jobs because they can no longer function at the pace that is needed to maintain their jobs.  I could not do the job I did for this reason.

Although it has taken a while to not feel useless not having a job, I do know that it is for the best.  Having worked all my life I felt that I was not contributing to the upkeep of my family.  My husband is very understanding and has continuously told me that all the things I do make up for not bringing in an income.  It is beginning to sink into my brain, although not fully there yet.

Everyone has their own favorite movies.  I think I might watch Titanic again soon.  It is a wonderful, beautiful movie and I really enjoy it.  It doesn’t matter if I lose track of the dialog in that movie……….I’ve seen it so many times that I pretty much know it by heart anyway!

Let Me Do It My Way

For those of you with children, or even younger siblings, you may remember teaching them to tie their shoes.  They would hold the shoestrings in their fingers, form a loop, and try to put the loop around their other finger to make the tie.  It was often a frustrating experience for you and them.

Often, the child would want to tie their shoes only when you were in a hurry.  You would try to be patient but, after them trying several times and having to start over, you would attempt to take over the process.  Often when this happened, the child would stomp their foot and say “I want to do it”!

Most of the time those of us with MS have to learn patience when doing the things we want to do. Take cooking, for instance.  I love to cook.  I take out my veggies, wash them, rest.  I tear up the lettuce, rest.  I dice tomatoes and cukes, rest.  I shred carrots and dice peppers, rest, and on and on.  I season my meat and let it marinate.  Rest.  I get my potatoes ready to bake.  Rest.  It is a frustrating experience.

In years past, I could fix salad, marinate meat, prepare potatoes and go on to the next activity.  Now it is a long, drawn out process of little things accomplished between rest periods.

I have tried several medications to improve my energy level but none seem to help very much.  Although resting between activities gives me a little boost, my energy is never to the point that I can just do the things I want to without dragging.

I have read posts from different MSers where they have pushed themselves at times of low energy and fallen.  When I get to the point in my day when my feet are not picking up when I walk, I rest.  I have fallen and broken my leg and DO NOT want to repeat that activity!  It is better to rest than risk an accident.

Most of the time I am reasonably patient.  I have dreamed of the day when I would get up with an attitude.  I would march in the kitchen and tell MS, “Today I will do things my way” {stomping foot}!! ;)

Planting the Garden

My husband and I really enjoy planting flowers and our little garden.  We bought our plants and planted them today.  Actually, he did most of the work, but I did manage to get rather dirty trying to help!

Planting things and watching them grow is a joy.  It is so fascinating to watch a tiny seed or plant grow and sprout a beautiful flower, vegetable, or greenery. 

With watching things grow, you have to be sure and water them, feed them, and weed them.  It is a shame that we can’t “weed” our MS and get rid of it!  Maybe a good bug killer would do the trick!

The more that medical science learns about disease, the better they are at developing treatments and medicine to help cure or control them.  There are so many diseases that, years ago, would kill hundreds and thousands of people and now rarely is heard of.  With all the money that is spent on research it would seem that more and more diseases will go into the extinct category.

I hope and pray that one day MS will be in that group.  I realize that there are so many things that the human body can develop that is harmful and deadly to us that it will take many, many years to get a handle on all of them.  For those of us waiting for a cure, it seems like an excruciatingly long time.

I think that things get out of hand sometimes with priorities.  The diseases that cause the most deaths and impairment should be at the top of the list for research.  Many people get all bent out of shape over those of us trying to get disability benefits and other help with medical costs because we are unable to work and take care of ourselves.  I understand that many who do not really need it take advantage of these aids and make it harder for those of us that do to obtain help.  This is not new and will always be.

Hopefully, some of the doctors who are dedicated and desire to help those of us who are struggling with illness will get a breakthrough soon.  I know in my heart that most of us want to be productive human beings again.

Until that time, maybe we can talk one of those weed killer companies into investing in a little project on the side………….MS Zapper would be a good name don’t you think??!!

Fleas and Bees

We had the least amount of winter that I can remember.  There were hardly any nights that even got down to freezing.  It may have been great for heating bills, but the summer will probably be overflowing with insects.

I feel sorry for the dogs and cats.  They will have to be “deflead”, flea collared, and washed more often.  If most are like our dog, she does not like that!  Although she likes playing in the yard, I’m sure she had rather never go outside than have to go through flea treatments.

The mosquitoes, flies and such will be out in full force.  The spiders, snakes and other unmentionables will thrive in the heat.  The bees will also have a good year.

Unfortunately, most of us with MS don’t need to be around a lot of bees to buzz!  We buzz a lot on our own.  When my buzzing is really on full power, the sensation is so strong I  wonder why others can’t hear or see it.

According to Dr. Gary Levin, Multiple Sclerosis pins and needles, or buzzing, are caused by damage to myelin, which forms a protective sheath over the nerves. Myelin helps in the fast carrying of signals from the brain to the nerves. When myelin is damaged, it is unable to do this function, which in turn leads to the nerves getting damaged. When this condition occurs, it leads to symptoms like dizziness, fatigue, bowel and urine inconsistencies, depression, neurological disorders as well as tingling sensation. One of the early symptoms of Multiple Sclerosis is MS pins and needles, which are usually brought on as a result of MS related heat resistance or a result of MS fatigue. In most cases, it should lessen or disappear once the person’s body temperature is normal or when the person has gotten sufficient rest. Touch sometimes triggers this sensation. MS pins and needles is one sensory symptom of Multiple Sclerosis that is very commonly referred to as tingling, numbness, pins and needles, burning sensation, severe itchiness or a vibrating or buzzing sensation. It can come on at any time of the day or night. In fact, this being neurological in origin, is one of the key symptoms associated with MS that often leads people to seek treatment. MS pins and needles usually appear in the hands and legs and tend to move to the core. It can interfere with normal body functions. 

Not only am I dreading summer because of the probable overpopulation of critters, but the heat will get the buzzing really tuned up.  When I took piano as a child, one of the pieces my teacher often had me practice was “Flight of the Bumblebee” by Nikolai Andreyevich Rimsky-Korsakov.  What I played was a very simplified version of a very hard piano piece, but made me feel like I was really doing something to be able to play it.

Maybe all us MSers can get on our little bumblebee costumes and buzz away for the summer………either that or stay inside in the air conditioning…………I think I’ll go with the latter choice! ;)

The Tortoise and the Hare

Remember reading or hearing that story?  We have usually been told that the moral of the story is that slow and steady wins the race.  Another way to see the story could be that to have success, you have to use the talents you have, not just flaunt them.  If you do, someone who is “slow and steady” may just come along and outshine you.

I used to be kind of like the hare.  Although I don’t think I ever flaunted any talent I might have had, I was quick in getting things done and had boundless energy.  I would go to work, take care of my household chores and still have the energy to go out dancing or something.  MS has greatly changed all that.

I am thinking that MS causes us to be hares.  What we used to do is out of the question now.  Most of us with MS have lost the ability to do many of the things we used to do, from thinking clearly, seeing clearly, being able to walk or take care of ourselves.  We have had to rearrange our priorities and do what we can when we can. Taking it easy and thinking we can do something quicker and more efficiently than someone else no longer is an option.

Many diseases “take the wind out of your sails” and leave you with only a part of the life you used to have.  Most people who do not have any of these diseases have no idea what we go through just trying to make it through a day. Having a list of things to do and trying to decide which one to start with is a fantasy.  We are lucky if we can start one thing and get it finished.

My husband is a boundless mass of energy most days.  It is rare that he gets up feeling a little “sluggish”.  When he does, he always tells me that it gives him a better idea of how I must feel every day.

I have watched “Dancing With The Stars” a couple of times lately because Donald Driver is one of the celebrity contestants.  As I have mentioned before, we are big Green Bay Packer fans, and I wanted to see how he is as a dancer.  I am impressed with his performances so far.  He is one of those people with an abundance of energy.

Maybe I need to embrace my role as a tortoise.  When you think about it, he did win the race and is the hero of the story.  There is a lot of satisfaction in knowing that even if you have to take your time and do everything slow, you can get the job done…….and I’ve always thought turtles were cute anyway!  Go Ninja Turtles!!!