Thursday, May 31, 2012


Sometimes I wonder
How life will play out
Will I ease into darkness
Or go out with a shout.
Will I mourn past loses
Or celebrate past gains
Will I be a better person
Or remain the same old same.
I hope I can remember
How fun life was before
From climbing up a mountain
To running on the shore.
I used to dance till dawn
And work from nine to five
I was full of fun and energy
And happy to be alive.
The years have not been kind
They’ve piled on much, it seems
To swallow up my hopes
And trample down my dreams.
But as I sit and ponder
All the years that have gone by
I can only smile with joy
They were fun, I can’t deny.
This monster they call MS
Has slowed me down with pain
It has scrambled up my brains
And I’m usually walking with a cane.
The things I used to do with ease
Come at a cost so dear
Even though I try to ignore it
It makes itself so clear.
But though I moan and grumble
I am not at all “why me?”
No matter where I seem to go
There are always worse I see.
So thank You God for everything
The sun, the earth, the rain
The blessing You have given all
Even through the hurt and pain.
We are blessed beyond comprehension
Just look around and see
I bet you’ll feel like I do and say
There is No One blessed more than me!! ;)

Tuesday, May 29, 2012

Getting Off the Pot

We live in a two story house that was built around 1922.  My mother lives downstairs and we live upstairs.  There was no heat or air conditioning upstairs when we moved in, but that has had to be remedied!  (especially the air!)

Since stairs are a problem with me, I come down them in the morning and go back up when I am sure I will not need to do anything else downstairs.  We have a den, bedroom and study upstairs.

There is also no bathroom upstairs.  We tried to have one installed, but it was going to be a major problem because of where the water pipes come into the house.  We decided that we would use a chamber pot.

If you do not know what a chamber pot is, it is a bowl-shaped container with a handle and usually has a lid.  In olden times it was kept in the bedroom under a bed or in the cabinet of a nightstand and generally used as a urinal at night. In Victorian times, some chamber pots would be built into a cabinet with a closable cover.    Ours sits on the floor near the bed.

It is very embarrassing to use a chamber pot. My husband, Howard, has often threatened to take my picture sitting on it and I have assured him that that would NOT be a good idea! Not only is it totally un-ladylike, it is hard to get up and down on a chamber pot.  The one we have looks like this:

As you can see, it does not add a lot of d├ęcor to our bedroom!

The biggest problem I have with this is that my legs are so wobbly it is often hard to get down to the pot and then get back up.  Just the other night I had to wake Howard up to help me get off of it. 

I realize that this is not a problem that most of you would have.  However, most of us DO have a problem with movement from up to down and back.  As my legs become more unstable, I find that just getting out of a chair is often a major to-do.  The chamber pot is way past that!

Howard says we are going to look for a “bedside commode” so that I can replace the chamber pot for something that will be more stable and easier to use.  He also wants to get a walker with a seat and storage area.  I know they both would make life easier for me, but I hate to get them because………… know………it means “I’m there”. 

I think we all hate to think of getting to the point where we are considered the older generation or handicapped.  I don’t mind getting older. In fact, I have really enjoyed it.  The handicapped part is a different matter.  Besides, I always said if I had a choice of losing my physical abilities or losing my mind, I would rather lose my mind because then you wouldn’t care what was happening.  It is really a pain to realize you are losing both!!!!!!!!!  Would you like the room next to mine?? ;-)

Wednesday, May 23, 2012

A Little Understanding Goes A Long Way (Part Two)

I hate to beat something in the ground, but I think this point is important.  We need to have more consideration for other people’s feelings and problems.

Most of us with MS are in a similar situation – we are limited in our activities and have to enjoy what we can within these limitations.  That is why there are so many Facebook and other websites that a lot of us gather on to discuss our problems.  I have been so blessed to be able to make a lot of friends this way and feel like they have helped me with so many of my problems.  We try to encourage each other and pass along any help we can give to each other.

Most of us also play a lot of the games offered on these sites, especially Facebook.  It is something we can do to entertain ourselves and hopefully keep our minds as sharp as possible.

As with most people with friends on Facebook, I have MS and non-MS friends.  Most of my friends are aware of my problems and are kind and considerate.  Some of those friends are not, although they may not mean to be unkind.  Some of the people I have “friended” have been referred by other people, are game friends, or just wandered onto my site for some reason and asked to be friends.  I usually don’t turn anyone down unless I am really suspicious of them, which has only occurred a couple of times.

Usually, like a lot of you, I often wade through a lot of Facebook talk without really reading it.  I did stop and read something the other week because the person writing the comments was doing so on a friend’s post and I recognized the person.  I was a little hurt and disgusted at the comment.

My friend had, as do all who play games, posts appear on her site from requests she had made while playing games.  If you don’t know about this, when you need something in one of the games you are playing, the game usually posts it to your site.

The other person had written under the request: “Do not ask me for game requests.  I do not play games and consider them a waste of time.  If you do insist on posting games requests on my site, I will unfriend you.”

Maybe some of you reading this agree with this comment.  I don’t.  If you do not play games, I have no problem with that.  I do, however, have a problem with rudeness.

Many people, as I stated above, do not realize that some of these things are the only outlet that a lot of us have.  Our entertainment and many of our friends are online and that is the major part of our lives.  If someone does not understand this, fine.  If I don’t care for the things some people are saying online, I skip over it.

Sorry………..just needed to vent……..thanks for “listening”……I am OK now!!! J

Tuesday, May 22, 2012

A Little Understanding Goes A Long Way (Part One)

Years ago I was a paralegal at a law firm.  One of the cases we obtained was a high profile case involving a murder that was well covered by the media.  It was an exciting time for those of us working on this and we worked long hours trying to get our case together.

In a briefing one morning, our lead attorney announced that Melvin Belli was coming to town as a consultant on the case.  If you don’t know who Mr. Belli was, you need to look him up.  Not only was he one of the most well known attorneys of his day, but he was also an author and guest starred in several television shows (Star Trek for one) and movies.

There were four of us assigned to help Mr. Belli and we were all nervous and excited to meet him. We were sitting around the desk in one of the meeting rooms waiting for him and trying to calm down.  When the door opened, Mr. Belli came in with a tray in his hands.  On the tray was coffee and an assortment of pastries.  Each of us scrambled to help him, but he waived us back to our seats.

Mr. Belli sat the tray on the table and proceeded to pour each of us a cup of coffee and serve us.  We were so awe struck that we could not say anything.  After serving us, he sat at the head of the table and began to speak.

He told us that he was happy to have each of us on his team and knew that if we all put our brains together, the case would come out well for our client.  He said that over the years he had been fortunate enough to become rich and well-known in his chosen profession.  He had known some of the most well-liked people in the world, and some of the most hated people in the world.  But all of them had one thing in common – they all wanted to be understood. 

I have tried never to forget that statement.  All of us, no matter what we have done, want our side to be understood.  A lot of the problems we have in life, no one wants to understand and help us with.  Some of the time, we don’t stop to try and understand others.

A little understanding DOES go a long way.  If we take the time to try and help each other in our individual struggles, each of us might find the help and guidance that we need.  Many times helping someone else will answer the problem we are having in our own lives.

Mr. Belli was not a perfect man.  He had many faults and often seemed very arrogant in his later life.  But he will always have a place in my mind as a person who knew how to make the least person around him feel important.  It was a trait we should all try to master!

Monday, May 21, 2012

Going To The Fair

I always loved the fair.  The games, rides, food, lights and people made it such a special adventure when I was young.  It was such a treat and one that only happened often enough to keep it exciting and different from normal activities.

Sometimes I think of MS as going to the Fair and riding the roller coaster.  There are so many ups and downs we go through each day.  Some days I get up and can hardly move, but by the afternoon, I am getting around pretty good.  Some days I get up feeling pretty good, but spend the afternoon in the recliner barely able to move.  I guess that is why it is so hard for people who are not afflicted with this Monster to understand……….it is never the same.

On days that I feel pretty good, my mind wants to think that maybe it is a mistake to think I have MS and I need to try and get on with my life.  Unfortunately, things don’t stay that way.  About the time I am really getting into this idea, it hits me between the eyes!  My legs start wobbling and hurting, my tongue gets thick and I can’t speak well, and my brain turns to mush.  To say it is a letdown is to put it VERY mildly.

I guess that’s one of the reasons why so many people with MS have problems with depression.  About the time you try and get used to one problem, another  jumps up and hits you.  This roller coaster of pain and emotions is hard to deal with. 

I have had periods of time when certain symptoms stay with me.  After a while you kind of expect them to be there and learn to deal with them.  This settles the mind and gives the body a chance to learn how to cope.  When the symptoms change, it is hard to adjust and causes us to often go into depression.  If you think about it, it makes sense this would happen.

I was raised in a family where most of them thought that people who had mental problems were weak.  They believed that these people had not been taught to face life and would never amount to anything because they let things upset them too easily.  Having MS, I know this is not true.

It is true that some people give into their problems too easily and get “all bent out of shape” over nothing.  This is not the problem with MS patients.  Most of us with MS have a multitude of problems we deal with every day, from walking to talking to thinking to whatever it decides to throw at us.  In this case, getting depressed has nothing to do with weakness………we are some of the strongest people I know!  Although we are often knocked down by the Monster, we never give up the fight and keep holding each other up even if we have to do it lying down!

I would love to go to a Fair again while I can still walk.  Maybe eat a Funnel Cake, popcorn and a big drink.  I would like to try some of the games, too.  I think I’ll stay away from the roller coaster, though…..the one I am on every day is quite enough for me!!! J

Friday, May 18, 2012

Just Rambling……….

Several girlfriends and I try to get together on our birthdays.  We go out to eat, or have a “tea” party.  It is so much fun to just be crazy and cut up for a few hours.  These ladies mean so much to me and we really cheer each other up.

We had one of these meetings yesterday and it was so much fun.  We ate at a Tea Room and presented her with birthday presents.  Although it is not as relaxed out in a public area, it was still fun.

One of the ladies has a beautiful willow tree in her backyard.  Next month is her birthday and we will probably have a luncheon under that tree.  It is almost magical to do this and makes for a really special time together.

The only problem with this is that it is in June and the weather will probably be even hotter than it is now.  As all of you with MS know, heat is not our friend.

I lived on the Gulf of Mexico for almost 20 years.  I had a year-round tan, played beach volleyball several times a week and was fit and trim.  This is no longer me.  (By the way, if you have never played volleyball in ankle deep sand, you don’t know what you are missing!)

When my MS started really kicking in, I would notice that I could not stay out in the heat very long, play the sports I was so addicted to playing, or join in the other activities I had once enjoyed.  I became very limited in my outside activities and had to find things to do in the shade or inside.  Although being in such a beautiful area still had a lot of benefits, the things I had enjoyed for so long were quickly having     to be replaced by others.  It was a sad time in my life.

I don’t think most people really realize how little warmth it takes to begin to affect us. Uhthoff’s Phenomenon is the worsening of neurologic symptoms in MS when the body gets overheated from hot weather, exercise, fever or saunas and hot tubs.  These temporary changes can result from a very slight rise in core body temperature, even as little as one-quarter to one-half of a degree, because an elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses.  For many years, the “Hot Bath” test was used to diagnose MS.  A person suspected of having MS was immersed in a hot tub of water and the appearance of neurological symptoms or worsening of symptoms was taken as evidence that the person had MS.  Obvious causes of increased body temperature are things such as being in a warm environment, increasing physical activity, or wearing too many clothes. A not so obvious cause of increased body heat is having a fever.  Other causes that are not too obvious would be things such as wearing clothing that keeps you too warm, or being in rooms that, although they are comfortable for others, are too warm for you.  (This was taken from a post on Facebook)

There have been several sites that offer free cooling vests and such to try and help us enjoy outside summer activities.  I have some of these things and they really do help a little.  But not enough to really be able to be outside in the middle of the summer heat for very long.

It is a sad point to many with MS, especially those who are young, that they cannot be out in the sunshine, get tans, engage in sports and such in the summertime.  My heart breaks for those people.  I had my “days in the sun” and they are some really wonderful memories.  Some with MS will never have these kinds of memories.

So, where is this blog going?  I’m just rambling along, thinking of yesterdays and dreaming of the future……….don’t really have anything profound to say……..just remembering each of you in my prayers and holding you up to God… is still good even with the limitations it sometimes throws at us!!

Wednesday, May 16, 2012

Day to Day to Day………..

When I was younger, I loved changes.  A different car, clothes and music were so much fun to experience as fads came and went.  There were some good ones and some bad ones, but each was unique and exciting.

Now that I am older, plus trying to deal with MS, changes are often scary and hard to deal with.  In the past month, we have gotten new cell phones, a new computer, a new printer, a new VCR and thinking of switching our internet, telephone and television provider.  Although I have really enjoyed these new things, they also have been hard for me to learn and be able to use.

MS has really “eaten” my brain cells this year.  From reading blogs and Facebook posts from others with MS, this seems to be a normal occurrence. I DON’T LIKE IT!! Trying to type on this new keyboard is driving me crazy!  It may not seem like much to most people, but it is a major headache for me right now.  The new mouse has a mind of its own, too!

Every day, those of us with MS face a multitude of challenges just trying to be “normal”.  Most days, it doesn’t happen……….we stumble along and do the best we can and try to keep a smile on our faces.  Some days, we just give in and cry.

I was thinking of just sitting on the sofa and crying the other day when I started to realize how many blessings I have, the biggest one being an understanding husband!  Not too many years ago, we were not able to afford all these new gadgets.  We are so blessed in that we can usually buy the things we need, and many that we just want.

There are many outside things that I am thankful for also.  We have “raised” two nests of robins and one of doves.  We are hoping that the rabbits bless us with a new litter soon.  Watching these precious babies grow and get out on their own is a blessing that no amount of money could ever buy.

Even though my brain is often on the pause button, I can still manage to get through most days and do the things I need to do.  There may come a time when I cannot, but for the time being, I usually can.  I know that many are unable to perform even the simplest functions and I thank God for each day I can.
So, I will keep looking out my back door and hoping to see some baby rabbits…….. some squirrels ……..more birds……… butterflies …..and any other little critters that may wander into the backyard… :)

Monday, May 14, 2012

Spring Cleaning

Dear Lord it’s that time of year again
And my wardrobe is in need of changing
This attitude I’m wearing is all worn out
And my life is in need of re-arranging.
They say that forgiveness is “in” this season
I think I’ll try some on and see
If I discard some old fears, and put on some new smiles
There’d be considerable improvement in me.
I realize some times that these feelings
Are hurt, regret and despair,
There are people who don’t know my problems
And many who don’t even care.
Sometimes it makes me so angry
When others make light of our pain,
But is that MY problem not theirs
Are we really not all just the same?
We judge, we have sorrows and triumphs
In life’s little up and it’s downs
Can we not trade our questions for answers
And make smiles out of all of these frowns?
I’d hate to be caught wearing outdated sadness
And laughter is chic as can be
Do you think if I change my whole wardrobe
I would show the happy, blessed person who’s me! J

Friday, May 11, 2012

Dancing Through The Aisles

You know this is a joke, right?!!  My sweet sister-in-law took my mother and me shopping yesterday.  It was really nice of her to do this, but I am totally worn out now!

I inherited a lot of really yucky genes from my parents, but the shopping gene from my mother’s side is NOT one of them!  When I was young, my mother and her family used to go shopping every Saturday morning, dragging me along with them.  They would go in every store uptown, looking at every item each store had, and it would be late afternoon when we would return home.  I promised myself that when I grew up and got out on my own, this would not be the case at MY house!

I am not opposed to shopping, I just like to get what I need and leave.  If I am grocery shopping, I pretty much know what I need, get it, maybe a couple of extra items and check out.  Same thing with clothes, medicines or anything else. 

I am not saying something I didn’t go into the store for never catches my eye.  But, when it does, I don’t have to look at every item there to know if I want one or not.  I am just not an all day shopper.

Shopping with my mother is an experience only the toughest of shoppers need to witness.  Yesterday, for instance, she wanted a pair of shoes.  After trying on nine pair (seriously!), she decided she really didn’t want any and would wear the ones she has at home.  Did it really take trying on nine pair to come to that conclusion??!!

I admit that I am an exception to the rule for most women, and many men, in my shopping habits.  Even if I had not already been this way, the MS fatigue factor would have made it happen whether I wanted it to or not.

As I walked through the stores I could feel myself begin to drag.  I sat down several times to try and rest my legs so I would not stumble.  One lady asked me if I was out of breath.  I told her that I was not, just needed to rest a moment.  As she was several years older than I am, she gave me “one of those looks”.

I really don’t want to stumble anywhere, but especially out in public. First, I don’t want to get hurt.  Second, I don’t want to cause a scene.  Third………..I just don’t want to!!

One of the things that those of us with MS fatigue have to really be careful of is getting too tired and not resting.  Many of us have had some really bad falls because of stubbornness and it is just not worth it.  There is nothing to prove to anyone by pushing past our limits and risking harming ourselves needlessly.
I enjoyed getting out for a while even if it did tire me out.  I would love to think that I would improve enough to go dancing again one day………….unless medical science comes up with a really fantastic energy pill I can’t see it happening………so, I guess Dancing With The Stars will just have to be put on the back burner………. ;)

Thursday, May 10, 2012

Stupid vs Ignorant

According to an online dictionary, stupid means: 1. lacking ordinary quickness and keenness of mind; dull. 2.characterized by or proceeding from mental dullness; foolish; senseless: a stupid question. 3.tediously dull, especially due to lack of meaning or sense; inane; pointless: a stupid party. 4. annoying or irritating; troublesome: Turn off that stupid radio. 5. in a state of stupor; stupefied: stupid from fatigue.

On the other hand, ignorant is defined as: 1. lacking in knowledge or training; unlearned: an ignorant man. 2. lacking knowledge or information as to a particular subject or fact: ignorant of quantum physics. 3. uninformed; unaware. 4. due to or showing lack of knowledge or training: an ignorant statement.

I believe I am both!  In the last few years, MS has greatly affected my ability to learn and/or use the knowledge that I have.  I have noticed this especially in the last couple of days.

My husband finally talked me into getting a new modem with Windows 7.  I was really excited about this as my Windows XP was no longer supported by online help and troubleshooting.  Since, as I have stated many times, I have enough knowledge to do a few things with computers, but not enough to figure things out when something is going wrong, I was anxious to be able to go online and hopefully get help in these situations.

I have been excited and scared about this change.  I am a person who loves learning and trying new things. But with the progression of my MS, this is not always possible.  Things “don’t compute” as they should and I often have trouble trying to get things to work.  This makes me very frustrated and stressed, which also aggravates my MS.  Needless to say, my MS has really flared up with the arrival of my new computer!

Although most things I have tried on this machine are working as they should, there are some things that I cannot seem to figure out.  Take my email, for instance.  On my old computer, all my email accounts were integrated into IncrediMail with no problems.  I cannot get the accounts to work on this machine no matter what I do.  I have scoured the internet looking for help with this and everything I try does not help.  This leaves me with a lot of stress and frustration.

I have felt both stupid and ignorant in this struggle to sort things out.  I have felt stupid because my thinking is dull and my brain often in a stupor; I have felt ignorant because I know that I am unlearned and unaware of much computer knowledge that would sort these problems out easily.  I am not sure which feeling gives me the most grief!

But, all in all, I am very happy with my computer.  Although I have much to learn about it, and many new things to try with it, it is still a joy to me and a way to feel useful.  Besides, there are always games to play and my Facebook and MS families to keep in contact with……….life is still so very good!!! J

Monday, May 7, 2012

Don't Walk Under A Ladder

If you haven’t guessed it yet, I love researching stuff, especially old sayings and such.  The “Learn Something New Every Day” website states that the above saying has several origins.

The first comes from the Christian nations, where the ladder represented the holy trinity of Father, Son, and Spirit. This is because the ladder forms a sacred triangle, whether free-standing or leaning against a wall, and to walk through this triangle is to “break” the trinity… to commit blasphemy. So, you walk under a ladder, you’re in league with the devil.

Another theory suggests that a ladder was associated with the gallows, a raised platform to facilitate public hangings. Naturally, anything related to that would have the bad luck stigma attached.
Ryan, who writes the LSNED website, has his own theory about ladders.  He says his theory is that when you walk under a ladder, especially with somebody working above, you would be significantly increasing the odds of having something fall on you.  I think this one is more logical.

My own theory comes from a different source….MS.   My theory is that those of us with MS should not walk under ladders because we will probably trip over one of the legs or fall into the ladder and hurt ourselves.  Simple!

Long before I was diagnosed with MS, I was walking into walls, bumping cabinets, tripping and falling.  MS and graceful do NOT equal each other!  It seemed that no matter how far away I walked from something, I still would eventually bump into it.  My gait was so awkward and tended to go in a zigzag pattern. I say “was”, but it pertains to “is” also.

Many MSers have what is called foot drop.  They are not able to properly lift the toes of one or both of their feet in order to have a solid step.  This causes their foot/feet to drag and makes them stumble and often fall.

Although a lot of us don’t have foot drop, we do have very unsteady legs.  When I get fatigued, I don’t pick my feet up properly and trip myself on the floor.  Sometimes my legs are so weak I drag along and stumble. 

Often I find that my legs just won’t hold me up.  When I try to stand or walk, they buckle and cause me to fall. 

Most of us with MS fight a daily battle with fatigue.  It is the most common symptom of MS and the one that seems to be the hardest to find help with.  Although there are several medications on the market that say they help with fatigue, I have not been able to take them or they did not work for me.

Since I try to be as smart as I can with my MS problems, I will stay away from walking under ladders………..or across bridges……or jumping on trampolines……….or walking down steps……or walking UP steps…….or about a million and three other things!!!

Friday, May 4, 2012

Out With the Old………..

This computer is about six years old.  It is running Windows XP.  When I have a problem, I often cannot find help with it.  So, my husband has convinced me that we need a new computer.

I am anxiously awaiting the UPS truck to bring it.  Anxious in two ways: (1) it is always thrilling to get something new “to play with”, and (2) anxious about being able to think clearly enough to switch from one system to another.

I am a computer nerd wannabe.  I am fascinated by all the information it offers and all the entertainment available to waste a few hours with.  The whole world is at my fingertips when I surf the internet.  I have a lot of wonderful “friends” on Facebook.  When I want to see what I have missed of my favorite shows, I can watch them online.  I can listen to music or play games when I want to be entertained.  There is just so much to offer with a computer and I have trouble wondering why anyone would not want one.

I am also afraid that my cognition has gotten to the point that it will be a real struggle for me to learn all that I will need to learn to be able to do what I want to with this new system.  Not only will I have to learn the system, but I need to get a lot of stuff off the old one and onto the new.  I get really nervous thinking about it.

Computer manufacturers and programmers really get on my main nerve sometimes.  I don’t understand why those of us that are satisfied with things cannot be allowed to continue using them.  I realize that on the surface, we can.  But if we want any help or need some troubleshooting, we are out of luck with an older system. 

I guess in all fairness, it is this way with just about everything.  Every year the car companies put out a new model that we will eventually need to upgrade to in order to stay in the guidelines of passing inspections.  After a while, we will no longer be able to have our older models worked on or find parts for them without going through an act of congress.

The same is true for televisions, telephones, clothes and so on.  The product and demand cycle has gotten us so used to having the newest and best that we cannot seem to remember when that was not the case.  It is very sad.  Some of the best things were the original designs.  Although most things have gotten shinier and fancier, they are not necessarily better.

Those of us that have MS often find all this change a challenge that others may not realize.  Reading instructions, comprehending what you read and following through with these, all are great hurdles that are often beyond our reach.  Maybe someone should come out with a separate manual on each item for MS people!  It would involve in depth instructions with little pictures so we MIGHT get it!

As I get older, I realize how much I loved the simple life.  We seemed to appreciate things more and held on to them because they were special.  I am glad my husband is like that and won’t toss this “old” out for a “new”!! J

Thursday, May 3, 2012

Where She Stops, No Body Knows

Did you ever go to the circus when you were young?  If you did, or even saw one on TV, I bet you remember the lady on the spinning wheel that had knives thrown at her.  Not even in my wildest dreams could I imagine being brave enough for that!

My husband’s mother was that girl in the Dodson’s World Fair circus, which was later part of Ringing Brothers.  She never got hurt while performing and used to tell wonderful tales of the people she met while a part of the circus family.

I think of MS as that wheel going around and around.  Each slot on the wheel has a symptom on it.  As the wheel spins, we are put on it and wonder which symptom we will land on. 

Most of the time, the wheel keeps spinning all day and we are moved around to different areas, each being a new symptom or repeat of one we have had before.  Each day may bring something new for us to endure, or a renewal of our everyday problems.

Most of us get really irritated when those around us cannot “get it”.  I know…….. I am one of those people.   I try to keep calm when friends and family look at me like I am a lazy idiot when I tell them I am too exhausted to do something, and have not done anything.  (I do not include my husband in this group…..if you have read earlier posts, you will know that he is very understanding and supportive of me and all of our MS family.)

Honestly, I can understand how most people without MS must think of us.  We “look fine” and sometimes have days where we can lead an almost normal life.  Other days, we can hardly move from the chair to the sofa.  It has to be confusing for an outsider.  It is confusing for US!

Sometimes when I am reading things others write about their MS experience, I notice that they almost always want their symptoms to settle down and stay the same.  If they knew what they were facing each day, they could probably handle it better.  I agree, but disagree, with that.

There are days when the fatigue almost eats me up.  I can’t move, think, or hardly breathe.  Other days, the fatigue is not as bad, but the brain is not working.  Still other days, the fatigue is not too bad and the brain works, but I can’t hold on to anything.  These are just a few of the examples of problems with MS, but you get the picture.
If I honestly had to choose which one I wanted all the time, I would be at a loss to do so.  Each of them possesses a real problem with getting through the day.  Each one causes stress and anxiety that make it hard to deal with the things we want to do each day.  Each one has a drawback.

As it is, the only wheel that goes round and round that would be fun is the one at Vegas.  But it would only be fun if you were winning!!! ;)

Wednesday, May 2, 2012

Rainy Days and (pick a day!)

I love rainy days. Makes me want to curl up in my favorite chair with a good book and a cup of coffee………..or a good movie……or just take a nap!

These kinds of days are special to those of us with MS. Not only do we not have to find a place out of the heat, but our eyes are not hurt by the bright sunshine. I know most people love the summertime.

They get to play/work outside, get a tan, swim, run, bike and other activities. Most of us MSers don’t have those options. Our outdoor activities usually involve trying to get into an air conditioned building or car as quickly as possible!

Summertime heat is especially hard on my fatigue issues. When I get hot, I become weak, nauseated and my speech becomes slurred. It is like being drunk without drinking anything. A lot of MSers have said that people often accuse them of being drunk because of these symptoms.

The sunshine also makes my eyes hurt and get blurred. Lights of just about any kind that are bright, or even normal to most people, make me squint and turn away. Not only do they hurt my eyes, but if I am exposed to them long enough, they seem to make me dizzy. My husband often tells me to turn the light on, but I really hate doing this because of my eyes. Even reading seems more relaxing with only a dim light.

MS is a strange disease. What would seem like healthy activities to most people are often taboo to us. Doctors tell people to get outdoors and exercise as often as possible. That is a wonderful idea, and very appealing, but not usually one that MSers can do.

As it is, I have become addicted to the computer and read a lot. The computer has opened up a lot of things and places to me that I would not otherwise have been able to experience. I know that this is true for most people. But to those of us that will probably only “get outside” by doing so through our computer, it has been such a blessing.

 Reading has always been one of my passions. There is so much to learn and enjoy through the written word. We can learn new things, be entertained, be scared, and be blessed through books.

So, I think I will turn down the lights and read………..or watch TV………or play on the computer……or just …..zzzzzzzzz !!!!!

Tuesday, May 1, 2012


I saw this on Facebook the other day: “Every time I see a math word problem it looks like this: If I have 10 ice cubes and you have 11 apples, how many pancakes will fit on the roof? Answer: Purple, because aliens don’t wear hats.” Unfortunately, this makes sense to me!

When I was in school, math was one of my best subjects. English and Literature were my next best. Now, none of the above makes much sense when I am trying to figure something out.

Besides fatigue, cognition (knowledge acquired through reasoning, intuition, or perception) is my biggest problem. Without the ability to use the knowledge that we have acquired during our lifetime, we are at a standstill with normal activities.

We use cognition for every aspect of life. When cooking, we need to know how to read and interpret a recipe. When writing a check, we need to know not only how to write it, but how to add and/or subtract the amount of the check. When driving, we need to be able to quickly react to the other drivers around us and know the route we are taking. These are just a few examples of everyday life where cognition is important.

To those who do not have MS or other diseases that make “thinking” difficult, these things seem so natural that they often lose patience with our bumbling around and trying to do things. I would not ever wish our problems on anyone else. But sometimes I do wish some of these people could spend a few hours in our shoes so they could better understand our struggles and know that we are not purposely trying to “upset the apple cart”.

I have not driven or written a check in about two years. This may not seem like a big deal to some people, but it is a major thing to me. It means that I am giving up a part of my life because I can no longer do these things, not because I just want to give them up and let someone else handle them. To those of you that are having to give up a part of yourselves and your independence each day, my heart goes out to you. I know how you feel. It is not easy and without the love and support of my husband, I would live on that pity pot I have talked about in previous blogs. As it is, I do visit it more often than I would like!

I realized a few weeks ago that I need to write these blogs when the idea comes to mind. If not, it is lost in that hole of “never to be found again”. With the slowness of my thoughts and typing abilities at this time, writing one of these can take anywhere from an hour, to writing a little bit at a time over several days. I try to stay one or two ahead for those days I am in that nothing zone that MSers get in sometime.

I do love purple and think it is a good answer to the question asked in the first paragraph of this blog………….and aliens DO wear hats…….but I am pretty sure they are usually green……….. :)