Thursday, March 31, 2011

Cold Feet and Legs, Warm….....….??

I have always had cold feet.  Even in the summertime, my feet will be ice cold.  The only time I can get them even close to warm is during a hot shower, which I can no longer endure.  This is another symptom of MS that many share.
The pins and needles are always present, but the coldness is to the bone.  My legs always feel cold.  If you touch them, they feel normal to you, but I feel like there are icicles inside them.  I wake up in the night and am burning up, but my right leg and feet are so ice cold that I feel shivers running up and down my leg.
Because MS is basically what I call a brain signal derailment disease, most of the pains and problems that it causes are hard or impossible to fix. Body temperature cannot always be perfect under the best of circumstances.  Any fluctuation in outside temperature is felt ten times more by a MS patient.  Our brains do not send the signals to the rest of our body to keep us warm or cool us off.
Many of the medications we take also play a major role in how our bodies regulate temperature change.  Often times medication stifles our body’s normal reaction to heat or cold and we end up not being able to adjust to the change. 
There are many slogans that are popular on the MS Facebook website.  Most of them are to boost and encourage those who suffer with this disease.  I think I will add a new one……….how about: Cold Feet and Legs = Warm Loving Person……….. :)

Wednesday, March 30, 2011

Can I Be Rip Van Winkle---Just For a While?

Four years ago I had another neurologist.  According to his nurse, if I would eat this, not drink that, do this or that, my symptoms would clear up and I would be fit as a fiddle.  I tried it, but guess what?  Nothing changed.
I have been taking Requip for a long time to try and help me settle down and sleep.  My husband and I did not think it helped much until we went on a trip and I forgot to take it with me.  It was a very long, sleepless, restless night for both of us.  I seriously doubt I will forget to take it anywhere I go again.
Obviously, it helps some.  I still have trouble sleeping, often lying in bed for several hours before falling asleep.  I always wake up two to three hours later and cannot go back to sleep.  I feel hot, not sweaty, but on the inside, and restless.  When I do fall back asleep it is only for a few minutes.  This goes on until morning. 
Most of the people who write on the MS site have the same problem.  There are two things that 99 percent of MS patients have: fatigue and sleep problems.  Most of them wake up, are hot, restless and have broken sleep.  Many are on medication to help them fall asleep, but are told not to take it over once or twice a week.  Unfortunately, that is the only time they get a full night’s sleep.  They often say it is hard not to abuse the medication just to get some rest.
I guess part of the fatigue with MS is lack of rest.  Most MS patients rest several times a day, but it is not a peaceful rest.  We are constantly moving and uncomfortable, so the rest does not really rejuvenate us. 
Many dream for a Rip Van Winkle period……….just sleep peacefully and let the world go by………hopefully not for as long as he did….

Tuesday, March 29, 2011

Fire On The Mountain

I always loved that song.  It has a nice easygoing sound.  It is relaxing and pleasant.
Unfortunately the song came to mind during a rather strange happening today.  I was standing at the sink (peeling shrimp!) and my back started to burn like someone had lit a match to it.  It felt like a really bad sunburn for about thirty minutes and then eased off.  I have felt this before, but not as intense.
Many people with MS have burning sensations, usually in their legs or bottom of their feet.  My legs often feel like they are badly burned, but this is the first time my back has been that bad.
According to the MS website, this type of pain is neurological in origin.  It is caused by lesions of the nervous system, peripheral or central, and it involves sensations, whether spontaneous or evoked, such as burning, itching, electric shock, and pins and needles.  Wikipedia  describes it as having  been described as feeling like acid under the skin. A patient suffering from dysesthesia can find it to be unbearable at times. Dysesthetic burning has been called "Dante-esque" pain. The terminology used to describe it is usually interchangeable with descriptions of Hell in classic literature. It is the "bluntest" pain of which the human body is capable, and is characterized by the absence of accurate discriminative information.
However one describes it, it is uncomfortable, to say the least.  I love the song, but feeling it on your body is not a pleasant thing.  Makes one want to call the fire department…………..

Monday, March 28, 2011

. . . . . . . . . A Box of Chocolates

Each morning we get up and face a new day.  We decide what we want for breakfast, what we want to wear, etc.  Sometimes the day starts off on a bad note if we have car trouble or get up late.  Most of the time, it is a normal, run-of-the-mill day.
Those of us with MS wake up each day and wonder what we will have……………. numb legs, pins and needles all over, blurry vision, head pounding, pains in our face or multiple other symptoms.  Each day either brings a new set of problems, or a continuation of the old.
Even without MS, we can be faced with waking to a cold, the flu, a bad arthritis day, or a multitude of other ills.  Every day is new and different and presents us with new challenges no matter who we are.
How we face them is what makes us unique.  Some people grumble at the least little problem.  Others face situations that most of us could not even dream of being able to handle.  Most of us fall in the “in between” category. 
I used to get frustrated when I had a really busy day at work coming up and woke up with a cold, or some other routine ailment.  I knew that it would be a really hard day trying to cope with not feeling well and needing to be extra sharp.  We’ve all been there.
I know now that I will have something each day when I wake.  Whether it is the normal fatigue and inability to balance well, to some new thing that has decided to plague me, I will have to get through the day the best way possible.  I hope I have learned, as some others have, that each day, no matter how painful or awkward, is precious and needs to be cherished.  If we are conscious and mobile, we are far above many people in this world.  For this, we should always be thankful.
I do love those boxes of chocolates, though, with the variety of choices.  Like my choices in people, I tend to go for the nuts!

Friday, March 25, 2011

You Got Your Degree Where??

I have read about some crazy “cures” for different diseases.  Some of them are really out there.  Many people have died trying them.  I used to wonder why someone would try such really stupid sounding things that seemed so dangerous.  I understand now.
I have an aunt who had cancer.  She was given only a few months to live.  She was offered a different “cure” that was illegal in the United States, but obtainable.  Since she didn’t seem to have many options, she agreed to try it.  She lived about forty more years.
I have another aunt who had cancer and was given chemotherapy and radiation treatments.  She is still living, but very thin and weak.  She has said that if it ever comes back, she will not go through that again.
 MS doctors offer their patients several treatment options.  I wrote a blog about some of them.  They are not pleasant and I still do not know which one I will end up choosing to go with.  Most are almost as painful as the disease and cause a multitude of symptoms to add to the ones the patient already has.
In talking with other MS patients, I have learned that off the wall treatments don’t seem so weird anymore.  Sometimes, the most simple of things will be the most helpful, without adding to problems one already has.  I am becoming more and more open to alternative medical practices.  There are loads of vitamins and herbs that might help. Acupuncture, physical therapy and even hypnotism have helped some with different symptoms.  I have decided to have an open mind about these things and weigh all my options before jumping into treatments.
My husband takes medication for his arthritis.  My legs have hurt so bad and been so undependable that we decided that the medicine might help me also.  I think, if only a little, they have.
My doctor is probably going to look at us and say, “and where did you get your medical degree.”  I am tempted to say, “from the School of Hard Knocks.”  After all, didn’t most of us graduate from there? J

Thursday, March 24, 2011

Going My Way?

As I was saying yesterday, we drove out in the country and enjoyed the view.  I was a passenger.  I am always a passenger now.  I don’t drive anymore.  Not that I would not if it was an emergency, but I don’t, as a rule, drive now.
When my right leg started getting numb I had to begin watching carefully how I walk.  Sometimes it walks along OK and sometimes it just sits there.  I have to sling it to get it to follow along.
I was driving one day and nearly didn’t stop when the car in front of me did.  I had to quickly put my left foot on the brake because my right leg would not let me raise it.  The decision to quit driving came shortly thereafter. It was not an easy one to make. 
When mother had her last heart surgery, her doctor recommended that she quit driving.  He told her that if she had to turn the wheel quickly, she could tear some of her internal stitching and possibly bleed to death before being rescued.  At 82 years old, it takes a long time to heal internally.  It took a while to convince her to do so, but she finally gave up her car.
I know how she feels.  I probably feel it even more than she does as I am quite a bit younger than she is.  When I was young, getting a driver’s license was the biggest thing in our lives.  It gave us independence and the feeling that we were finally getting “of age”.  Thus, giving up driving is a hard thing to do.  It robs us of part of our independence and lets us know that we have reached that age, or in my case, that condition.
I think I’ve handled it pretty well so far.  My husband does not seem to mind taking me where I need or want to go and being the family chauffeur.  I try not to think about just jumping in the car and going where I want to go without having to ask someone to take me.
If you see me thumbing on the highway, please stop and give me a ride.  My usual driver may be busy or sick and I need to get someplace………I will be a good passenger………..I promise!

Wednesday, March 23, 2011

In The Good Old Summertime

We rode out in the country yesterday to take my mother to visit with her sister.  It was a beautiful ride.  The trees are budding and the flowers blooming.  The grass is getting green and the birds are flying around trying to find a good place to build a nest.  It was beautiful.  I wish I could really appreciate it.
Although I was thrilled with the beauty of everything, my main thought was that it would soon be hot.  I don’t do hot.  It makes me weak, nauseous and have a splitting headache.
I know most people can’t wait for summer and getting outside after being stuck in all winter.  I am opposite.  Not only will I still be stuck in, but can only reminisce about all the fun I used to have in the summertime.  I loved planting and caring for a garden, fishing, lying in the sun and getting tanned, and most outdoor activities.  They are only memories now.
MS makes your body hate heat.  I love a hot shower, but feel how weak it makes me when I try to take one now.  I loved getting a tan, but know that it would not be worth the price I would pay for trying to get one.  I can help with the garden if I go out in the early morning and don’t stay long.  I can fish if I stay in the shade and don’t go on days it is over 80 degrees. 
I can do many of the things I did, but on a lesser scale and with restrictions.  I guess that is true of most of us.  Not only age, but infirmities, finances and other things in life put the brakes on many of the activities we once considered normal.  They are now luxuries.
It is still fun to watch the world begin to bloom again in the Spring and listen to the birds bring their songs to cheer the day.  I just have to do it from inside the house rather than out in the yard.  That’s OK; it is still beautiful and wonderful.

Tuesday, March 22, 2011

What Did You Say?????

Yesterday was a bad day.  You know the kind.  You can’t focus; people talk to you and you really don’t “get” what they are saying; your head feels like it is full of fog.  Concentration is out of the question.
I remember when I was young and people would say, “You know so-and-so?  He/she is a real Space Cadet!”, meaning, they seemed to walk around in a world of their own and not pay attention to what was going on around them.  I felt like one yesterday.
I don’t really think it is a total MS thing, but I have had days like that more since it started.  Some days it is all I can do to focus on what is going on around me.  My brain takes in the words, but they don’t seem to make sense.  I try to talk, but making a complete sentence seems like rocket science. 
The simple things seem so hard.  I tried to think about this blog, but words would not come in the order that they made any type of sense.  I decided to put writing off until today, hoping it would be better. 
We all have times when the world just seems to spin around us and we are watching from the sidelines.  I found myself staring off in the distance, not really looking at anything, but just blank.  I would come back to reality and have no idea how long I had been gone.
MS often leaves one lightheaded, foggy brained and at a loss for words.  It clogs the brain so much that sometimes it is hard to function or speak.  I do not like that, as you can imagine.
I would not mind being a Space Cadet if it was only for a short period of time.  With MS, the fear is that it will last the rest of your life.
I hope the ship takes off and I can wave to the crew as it takes off to outer space……….I do not want to be a passenger!

Monday, March 21, 2011

Don’t Squeeze the Charmin!

There is a symptom of MS called the MS Hug.  Up to 75% of people with MS will experience this.  It is caused by a lesion on the spinal cord and is classified as a neuropathic pain called a “paresthesia”, which is basically any abnormal sensation.  It is brought on by tiny muscles between each rib going into spasm.
It is not pleasant.  It often feels different to each person, even different on different days or times of the day.  It can be as low as the waist or as high as the chest.  It can be in one small area of the side or back, or go all the way around the torso.  It is worse when one is fatigued or stressed.
It can last seconds, minutes, hours or years.  It can be a sharp pain, dull pain, burning pain, tickle, tingling, or crushing sensation.  Some have thought they were having a heart attack or panic attack.  It has often been described as being squeezed by a boa constrictor.
When I have had it, it seems like someone is standing on your lower back and moving around to your lower abdomen.  Whether standing, sitting, or lying down, there is no relief.  Pain relievers do not seem to help.
I like to think I am handling my MS problems well and keeping my sense of humor intact.  Some days it almost seems to be impossible to do so. 
I try to read the comments from other MS patients and get their feedback on how they are doing and what treatments they use to ease some of the discomfort of the different symptoms that pop up from day to day.  There are so many different aspects to this crazy disease that it is hard to try and handle it on your own.  I am grateful for the MS “family” that is always ready and willing to help in any way possible and share what they have learned in their journey.
Until this subsides, I will wear loose clothing and keep away from the snake cage!

Saturday, March 19, 2011

Paper or Plastic?

Spring is such a beautiful time of the year.  The flowers are beginning to peek out of the ground, the trees are budding and the birds are tweeting and fluttering around.  Color is coming back into the world after being mostly grays and browns for the winter.
Unfortunately, I often look through eyes that seem wrapped in plastic wrap.  No matter how much I blink them or wash them out, the world does not get any sharper.  This blurred vision usually comes with a pounding head and eye pain.  It is not uncommon with MS.
One of the biggest complaints those of us who are patients have is that we have symptoms, but when checked out, there is nothing there.  This is typical MS.  A particular eye problem, with one of those long really medical sounding names, will not be present…….only the pain and the blurry vision that have no rhyme or reason. 
When we have doctor appointments, the first thing the doctor usually asks is what symptoms we are having.  I often feel like a hypochondriac as I rattle off a list of things that have come up between my last visit.  The doctor patiently writes it all down and I sit there wondering what he is really thinking. 
I have an aunt who is blind from macular degeneration and cataracts.  She is in a rest home, having had to leave her home and most of her belongings.  It is very sad to see her sitting there, not being able to see you.  Fortunately, she is a high-spirited woman, full of life and joy, and a pleasure to visit.  Only rarely does her situation get her down.
I hope we can all gather strength from each other, from deep within ourselves, and from our God who rules the universe.  Only then will we be able to defeat the demons who try to ruin our happiness.
Besides, it is so much more fun to J than to L!!!!

Friday, March 18, 2011

Don’t Push the Panic Button!

According to the MS Website: Life is full of stress and MS generally adds a hefty dose of disease-related stress to the mix. MS is unpredictable and just anticipating the next exacerbation can be a significant source of stress. MS can also lead to some major life changes such as loss of mobility and interference with work. Thus the person with MS faces significant challenges in coping with a potentially stressful life. Stress has also been cited as a possible precipitant of the onset of MS or a trigger for exacerbations.
What are exacerbations? A clinically significant event (meaning that it has outward signs and/or symptoms) caused by an MS lesion on your brain or spinal cord. It is either a worsening of symptoms that you already have, or the appearance of new symptoms. Relapses are also referred to as "exacerbations," "attacks" or "flares."
When I have a new attack, I tend to panic, wondering how bad it will get and how long it will last.  This, of course, causes the stress mentioned above.  It is a vicious cycle.
Most of us have enough stress in our lives.  Between bills, the economy, family problems, sickness, conflicts in the world and a million other things, most of us have far more stress than we can deal with.  Watching the news or reading the newspaper can bring on a panic attack!
I need to learn that no matter how bad I think things are getting, I need to put it in God’s Hands and let Him help me with it.  Unfortunately, I have found that I tend to want to hang onto some of it and not let Him do so.  I need to learn to let go!

Thursday, March 17, 2011

Top 10 List

10 THINGS YOU DO NOT SAY TO SOMEONE WHO HAS MULTIPLE SCLEROSIS.  This was posted on the MS Facebook page the other day.  I really liked it and thought I would share it with you.
I think most of us have been taught all our lives to be positive, courteous and kind to everyone.  Sometimes, that tendency to be overly positive, is not the thing to be.  If someone is having a really hard day, a little sympathy goes a long way.  Not that most of us want others to think we are the only ones on earth who are having problems.  That is not the case at all.  It is just that if you are hurting, and it is an everyday thing, the above listed remarks are not the appropriate things to say.
When I meet someone, my first remark is not that I have MS.  It is not information that I share lightly.  I don’t feel that everyone needs to know. 
I do feel, however, that if I decide to share this information that is so very personal and one of the biggest parts of my life, it is your duty as a fellow human being to acknowledge that this is my burden and I have chosen to share it with you.  None of us with MS wants you to “walk on eggshells” around us; just realize that we are going through a never ending struggle that we accept and hope you will also.
We are all in this crazy world together and hopefully will hold each other up when needed. Those of us with MS will be more than glad to share your burdens with you if you will let us! 

Wednesday, March 16, 2011

…....…..Where the Buffalo Roam

One thing my husband and I have always had in common was our love for the mountains and the wide open spaces of the West.  To us, they are so beautiful and peaceful, reminding us of life long ago when things were slower and more personal.
I love the long stretches of land where there are no concrete sidewalks and stores to clutter up the landscape.  Riding along just watching for cows, horses, and tumbleweeds is so relaxing.
I had a nightmare the other night about being in an open field.  In every direction I looked, the field just went on and on.  That may not seem so horrible to you, but I’ll tell you why it is to me.  There was nothing to hold on to.
I am beginning to learn my limitations.  Walking through the house I run my hand along the wall, the back of the sofa, the chair, whatever is handy to keep my balance.  When we go shopping, I hold onto the buggy or my husband’s hand.  Going up the steps, I grab the back of his pants at his belt.  Each of these gives me the help in keeping my balance that I need not to fall.  Thinking of being set down in a store with no husband or buggy to hold on to gives me a sense of fear.
I have considered a walker or a cane, but my right leg tends to swing outward sometimes and I am afraid that I would trip trying to use them.  I think part of the reason may be that I do not want to give in and go that route until absolutely necessary.  I guess we all have that little bit of pride that is hard to push down.
I used to want to be a cowgirl and ride the range with the cowboys.  It seemed like such a wonderful life to sleep out on the prairie under the stars and be away from the hustle and bustle of the city.  I still dream the dream, but the reality would be scary at the moment………………

Tuesday, March 15, 2011

Outtake From the Exorcist??

From reading different posts on MS on Facebook and other MS sites, it is apparent that most of us have a lot of the same symptoms.  We may call it different names, but the results are the same.
I don’t know what the medical term is, but sometimes it feels like the muscles are twisting and tightening in the back of my eyeball.  It feels like stretching a rubber band as far as it will go without breaking.  I often wonder if my eyeball is going to start spinning around.  It is a painful, scary feeling.
Many of the aspects of MS are also symptoms of other diseases.  That is why it is so hard to get a diagnosis of MS from a doctor.  What is really bad is that there are so many symptoms.  It seems like every day something new wants to pop up and give you a hard time.  That is why most people who have MS call it The Monster.
Not only is it a monster, but it is an unappreciated monster by most “outsiders”.  I relate this to The Exorcist because, in the movies, it always seems so hard to get someone to believe that a person is possessed.  The person may be exhibiting all types of symptoms, but they can be related to other things if you really want them to. 
Most of us with MS have the same problem…….. many people don’t want to think that anything is wrong with us.  Maybe they only see us on a “good” day, or think we are whiners or stretching the facts.  I just wish we could have our MS exorcised and it be gone like in the movies.
We are all hoping and praying for a cure, or at least something that will put the monster on hold.  Until then, I will hope that my eyeball does not twirl around like Linda Blair’s head did!

Monday, March 14, 2011

Patience Is A What???

According to the MS website, many people with MS experience fatigue, hypersensitivity to hot and cold temperatures and other symptoms that can drag them down during the day. It suggests that MS patients should plan outdoor activities during times of the day that are cooler (during warm seasons) or warmer (during the winter). It states that if you know you usually get tired in the middle of the afternoon, schedule the work that requires the most energy in the morning and save less strenuous tasks for the afternoon. Also, be open to not getting things done right on schedule all of the time. Sometimes you need to give yourself a break and realize that the world isn’t going to end if you don’t get a particular chore done.
That sounds logical.  It is also, at times, impossible to follow.  Sometimes there are things that need doing and you just have to try and do them whether you feel like it or not.  That is when many MS patients have accidents.  In trying to push ourselves to “be normal”, we often get ahead of our bodies and end up with broken bones or stitches.  There are days that putting one foot in front of the other is the hardest thing I do all day.  On those days, if I try to do things that require me walking from here to there very much, I am putting myself in jeopardy.  It just is not worth the risk.
There are days my mind goes crazy with things I want to do.  Those are the hardest to deal with.  Patience is not an MS virtue!

Saturday, March 12, 2011

Time For a New Flea Collar?

Everyone has had nights when sleep just will not come.  It is not a new problem or an uncommon one.  MS likes to keep you awake and restless during the night.  It never sleeps and figures you shouldn’t either.
Most of the time when I can’t sleep, my legs feel like there are millions of little critters crawling up and down them just under the skin.  It is a very unnerving and uncomfortable feeling.  No matter what position you move your legs to, it does not stop.
I have been on Requip for several years for Restless Leg Syndrome, but it does not stop the critters from roaming around all through the night.  From reading other peoples comments, it seems to be a common thing with MS, together with burning and sharp pains in the legs.
When a part of the body goes to sleep, as it awakens, there is what is commonly called a “pins and needles” feeling.  This is different from that.  It feels almost like the skin is crawling, but with millions of little creepy, crawly sensations with it.  I relate it to movies where people walk into ant beds and they start crawling all over them.  It is a continuous, highly unnerving feeling.
Several nights I have twisted and turned, propped pillows up, and still could not find “that place”.  Our Pomeranian, Buffy, thinks I am very rude to wake her up at such wee hours of the night.  She has given me some looks that would curdle milk!
The other night she gave me a look and it almost seemed like she telepathically said to me, “maybe you should try some of my flea medicine.”  Who knows……….maybe when I order her next round I might just get some extra and try it………..

Friday, March 11, 2011

Is There a Storm Nearby?

About three years ago I started having what my husband and I call lightning bolts.  These are sudden, severe streaks of pain that run through my head.  They can go across my head, down the side of my face, or down the back of my head to the nape of my neck.
At first, I thought I might be having a stroke, but since there were no lasting effects from it, I dismissed that idea.  Also, my mother has had four strokes and never had any pain associated with it.
These lightning bolts are so severe that if they lasted more than the few seconds that they do, I am sure one would pass out.  As it is, I am usually left nauseated and dazed for a few moments.  Usually, they leave me with numb lips or a numb part of my face, not to mention being fuzzy brained.
I mentioned these to the doctor, but he didn’t seem to think they were anything out of the ordinary………..for MS that is.  As I’ve tried to get across in these blogs, MS is a strange animal.  There are no set symptoms, no certain age groups, and no set treatments.  That is one reason it is so hard to deal with.
There was a lady on the MS Facepage talking about having “an earthquake” in her head. Her earthquake and my lightning bolts are probably the same thing.  Her doctor didn’t seem impressed when she told him about it either.  I guess when you deal with these things day in and day out, as MS doctors do, they often get immune to hearing about pains and problems.  It is a shame.  To those who are experiencing it, it is brand new.
At least it isn’t usually an everyday occurrence.  Most things with MS are on again-off again type things.  It really makes it hard to adjust.  Never knowing what each day will bring………….but I guess that can also be said for the beauty of life……… is new and exciting each day.

Thursday, March 10, 2011

That’s a Serious Drawl You Have

I have noticed that I sometimes have trouble getting my words out.  I have to stop and take my time to get them formed correctly.  Sometimes it seems, at least to me, that decades go by before I can finish a word.  My husband tells me it is barely noticeable.
I do know that when my mouth is numb, which is seventy-five percent of the time, I cannot just say words.  It seems like the lips and tongue are in conflict with each other and when trying to say even simple words, they start a war.  The result is often a slurred word, or long pause to try and get things together for the right thing to come out.  Many times I find myself just nodding, instead of answering, for fear of what might come out of my mouth.
Most people who have handicaps or “defects” of some kind are acutely aware of them.  They may not seem as apparent to others as they are to us.  It makes it doubly difficult to just overlook something that seems so blatantly apparent to us.
When most of us were teens, we had some type of acne problem.  Some had a horrible time with it; others had just a few pimples here and there.  I do know that even if you just had one spot, it seemed like it covered your whole face and everyone was looking at it. 
If someone tells you they are having a problem with something, don’t make light of it because it seems like nothing to you.  It might just be that their whole world seems upside down………….

Wednesday, March 9, 2011

Follow the Bouncing Ball

A while back, the pianist at our church quit and we were left without one.  Since I had taken piano lessons for several years as a child, it was decided that maybe I could brush up on my playing and fill in until someone else could be found.
There are several things wrong with this assumption.  The first, and maybe the most important, is the fact that it had been thirty years since I had played.  It is NOT like riding a bike; you have to practice (at least once a decade!) to be able to play with any sense of accuracy.  The second, and equally important point, is that with MS your eyes do not always focus on what you are looking at.
I did the best I could.  After quite a bit of practice I was getting the hang of it again.  But it is hard to play when the notes are bouncing across the page.  The people would be singing one thing while I tried to find where I was in all the jumbled up notes I was seeing.
But I am one of the lucky ones.  Some people with MS have gone blind, or so near blind as to be unable to function in a normal capacity.  The blurring, jumping and eye movements are common. 
I remember Mitch Miller’s show when I was a child. On that show, the words to the songs scrolled across the bottom of the screen and you followed the bouncing ball to sing along.  That was fun; this is not.

Tuesday, March 8, 2011

The Wrong Kind of Tingle

Remember when you were first in love and you would get a “tingle” in your tummy when you saw the object of your affection?  I get a tingle in my face a lot of times, but it has nothing to do with my love being near!  I know, if you had a face like mine, yours would tingle also……..but let’s not go there!
Part of having MS is tingling in your face, leg and other parts without any reason.  Often times, the tingle is followed by a sharp pain that streaks through.  Tingling in your face is not as bad as tingling in your leg or legs, causing numbness and uselessness.  This is why so many of us with MS have that gait that seems to resemble a drunk person.  It is a very unnerving thing to try and walk when you don’t feel your limbs.
Sometimes, tingling in your face makes you reach up and feel it often and make strange expressions, trying to “wake it up”.  When a part of your body “goes to sleep” and you have those tingling feelings as it wakes up, you regain the use of that part.  With these tingling, it is not so.  That part of the body tends to stay numb and not be useful again.
Many people have dead parts for years and years.  It is sad to tell a part of your body goodbye.  Not only does your lifestyle change, but people’s concept of you changes.  You are no longer able to do many of the things you once did and your place in the world is moved to a different spot.
It used to be very irritating when my leg would go to sleep and then tingle back awake.  Now, it would be a blessing. 

Monday, March 7, 2011

The Pinocchio Syndrome

I remember hearing the story of Pinocchio when I was young.  All Pinocchio wanted was to be a real boy – to be normal.  I think I have a form of that syndrome.  It would be wonderful to be normal.
Unlike a lot of polls, I think, deep down, most of us like being normal.  I know few people who really want to be the lead singer or the star; they are happy being a back up and have a walk on part.  Most of us don’t really want to stand out in a crowd or be the center of attention.  I think it would be so sad to be so popular that every time I walked in a store my picture and everything I did was in a magazine for all to see.
It would be nice to get up in the morning, go to work, come home, fix dinner, and do it all again the next day.  Not that I didn’t do that for many years, because I did.  Only then, I didn’t appreciate it.  Do you?  I don’t know anyone who hasn’t at one time wished their lives could be more exciting and less “normal”.  We take for granted that every day we will be doing the same thing and never changing.  Please don’t take that for granted!
We are constantly told that different polls are taken and this, that and the other, is considered normal.  Personally, I think a lot of it is ridiculous.  If you look at some of the outcomes of these polls, I have never in my life known a normal person!
I especially remember that for many years, the average/normal person had 2 ½ children.  I have two questions for that: (1) who has the other ½ of your child, and (2) do you get to choose which ½ you want?!!

Saturday, March 5, 2011

Suck It In!

No, I’m not talking about my tummy, but emotions.  I remember when I was young watching Jackie Kennedy at her husband’s funeral.  All the news people kept saying how “dignified” she looked.  It must have been so terrible to have to be “dignified” in front of the whole world when your life had just been turned upside down.
I have somehow gotten into waking up at 4AM.  The other morning I was lying there, playing with Buffy (our Pomeranian), and started crying.  I wasn’t thinking sad thoughts or feeling down.  I just could not stop crying.  I tried my best to stop, but it would not. 
On reading and studying about MS, plus this IV treatment, it seems that uncontrolled crying (or laughing) comes along with it.  There is no rhyme or reason for it, it just happens.  Evidently that part of the brain that controls our emotions gets short-circuited and our emotions get all confused and overdose.  I am hoping it doesn’t decide to do so in the grocery store or church.
Most of us have been taught to hold in our emotions and not let people see us angry, upset, hurt, etc.  It is supposed to be the adult thing to do.  I have always thought we have  such a wide range of feelings to work with it seems a shame not to use them.
I do hope that if I have to experience this type of reaction, it will be the laughing rather than the crying.  I know that if I burst out laughing at an odd moment, people will think I am crazy.  Maybe so, but I still like laughing better. 
Besides, laughing is nice; crying makes those blotchy red things on your face!

Friday, March 4, 2011

James Brown Would Be Proud!

I Feeeeeeel Good, nana-nana-nana-na!!!  Well, maybe not THAT good, but better than I have for a while.  For some reason, today is a good day.  My leg is numb and I still walk funny, but most of my usual hurts are absent.  That is normal for MS.  Some days are better and some days are more challenging.
I know you have those days also.  I’m not saying otherwise.  Even before MS I had days where I was dragging and days I could climb Mt. Everest.  I really appreciate these “up” days now, though.
We all want to feel great.  It rarely happens.  Arthritis, headaches, ingrown toenail, or any little thing can really upset our days.  It doesn’t take something really dramatic to make it hard to function.  I have had dull headaches that seemed worse than a migraine because it would not go away and zapped my energy trying to function through the day.
In writing this blog, I am not trying to say that those of us with MS have it any harder than most people trying to get through their lives.  All I’m saying is, it is different.  We have struggles unique to our situation.  I just want to try to let those who have not been around the disease get an idea of what we go through so they can, hopefully, not judge so harshly when they see us.
We all suffer in some way, shape or form.  Helping each other through life should be our greatest goal. 
I thought about trying for James Brown’s scream but decided against it…………..I don’t want to give the puppy a heart attack…….nana-nana-nana-na……………….

Thursday, March 3, 2011

I Really Miss My Brain

One of the things I have really enjoyed in life is research.  I worked for a law firm for 15 years as a paralegal.  It was fascinating to dig into the books and records and find what I needed to compose pleadings and other documents in my work.
In recent years, I have enjoyed surfing the web and finding out all kinds of things that were never available to most of us before.  I alternate teaching Sunday School and love digging into all the resources on the internet to help with my subject for the week.  There are just too many interesting things to get into to be bored if you have a computer.
Unfortunately, MS does not like letting you enjoy all your brain functions.  I know that as one gets older, their brain cells start dying off and things get a little harder to comprehend.  MS speeds this process up greatly.  I find that it takes twice as long to “get” what I’m reading and trying to concentrate on than it did just six months ago.  I don’t try to keep the checkbook any longer, as I don’t trust my math skills to be correct.
I have read a lot of blogs and such from other MS patients and we do all agree on one thing - if you were once too proud to make notes and keep a log of things you do, you quickly lose that pride.  I make tons of notes.  It is the only way I can keep up with things anymore.  I am thinking of getting a small tape recorder and keeping by my bed as I usually think of something I need to remember at 2 AM rather than at the time I need it. 
I used to be fairly intelligent, learned things easily, and could do just about anything I tried.  Now, some days, I am lucky to remember to get up, dress, comb my hair ……………..

Wednesday, March 2, 2011

Tired Just Doesn’t Tell The Story

Fatigue.  I never really appreciated that word and most people have no clue what it really means. As one of the major symptoms of MS, those of us who have it really appreciate that doctors have recognized the importance and significance of how it changes your life.  All of us have been tired at some point in life.  Fatigue is a whole different animal.
The National MS Society defines fatigue as this: Fatigue can significantly interfere with a person's ability to function at home and at work, and may be the most prominent symptom in a person who otherwise has minimal activity limitations. "MS fatigue" is different from fatigue experienced by persons without MS.  It generally occurs on a daily basis; it may occur early in the morning, even after a restful night’s sleep; it tends to worsen as the day progresses; it tends to be aggravated by heat and humidity; it comes on easily and suddenly; it is generally more severe than normal fatigue;  it is more likely to interfere with daily responsibilities.

I point this out because that is one of the reasons a lot of MS patients get depressed.  When you rarely feel like doing anything and begin to feel useless, it is hard not to get depressed.  Most of us have worked, raised families and been involved in social activities all our lives.  As we begin to be so limited in our actions, people start pulling away from us and doors are closed to our participation.  It is easy to shrink into a hole and let depression take over.

I am fortunate in that I have a wonderful husband that stands by me and tries to work with the problems I face each day.  Some friends have yet to come around, but that is expected.  Most people just don’t understand, so they stay away.  It’s OK; those of us with MS know we aren’t perfect and don’t expect others to be either!! J

Tuesday, March 1, 2011

Four Score and Seven Years Ago…….

Most of us will never be famous.  We won’t end up as the CEO of a major corporation, a movie star, or win the lottery.  We do have our own little niches that make us feel like we are useful, though.  Keeping the yard looking nice, cleaning house, cooking, bringing home a paycheck all make us feel like we have a useful place in this world.
I am sitting here thinking of all the things I want to do; the windows need cleaning, the floors need mopping, the shower needs cleaning and you could write the Gettysburg Address in the dust on the TV.  It is really depressing.
My husband tells me that I need to concentrate on letting things go on the days that I have no energy and feel bad and to do things on the days I can.  I seem to have more of the can’t days than can ones, though.  I want to do things, but don’t seem to be able to get up and do them.  They run around and around in my brain, but my body won’t cooperate in getting up and getting them done.
Yes, I am on the pity pot today.  It is very comfortable right now.  I have settled into it and plan on sitting here until the mood leaves me and I can get back to my normal self. Then, I will get up, maybe throw a load of clothes in the washer and see if I can’t get some life back into this day.  I might even try for the 23rd Psalm in the TV dust...........