Just Thoughts………..

It is a rainy, sometimes stormy, day today.  I was watching the rain and thinking back to when I started writing this blog.  It has helped me in many ways, getting thoughts out of my head that ramble around and hopefully helping those without MS to understand it a little better.

When I first started this blog, I debated on what to call it.  I went on a lot of sites and looked at other blogs to see why each was named what it was.  There was a lot of information and it was a hard decision to make.

I call this PasstheMSplease for several reasons.  Although living with MS day after day is hard to deal with, there are other things I would not want to trade it for.

Having to deal with the death of a loved one is much harder than MS.  Although the pain does diminish with time, it is always there and the hole that is left by that pain never ceases.  MS is painful, but not as painful as that.

The breakup of a marriage or friendship is hard.  Having gone through both, I am not sure that MS is that hard.  Even if a marriage or friendship is bad, the pain runs deep and is hard to recover from.  There is always that feeling of failure to live with also.  At least with MS, we know it is not our fault we have it, and no matter what we have done in our lives, we could not have prevented having it.

Diseases, such as cancer, ALS, kidney failure, heart disease, and many more, are terrible to live with.  MS fits in with that group.  To sit here and say I would trade MS for any of them would be ridiculous.  Each person that has a debilitating disease feels that they are struggling and dealing with their problems the best way they can.  Each feels that anything added to their daily struggles would break them.  To think “trading off” with another set of problems would be any better is stupid.

When I named this blog I was thinking of being at a family get-together with a table full of food.  There were so many dishes to choose from and a lot of people passing these around to each other.  Every now and then you want something that is on the other end of the table, so you ask someone to pass it down to you.  So, as in “pass the salt, please”, pass the MS please (passtheMSplease) was born.

I hope you enjoy reading this blog as much as I do writing it and will send me your feedback or any ideas you may have for me to include in a future writing.  You are all very special to me and I truly appreciate the love and support I have received since starting this.  God Bless!!!

A Piece of the Pie

I am a dessert lover.  I don’t want dessert with each meal, but when I do crave one, nothing else will satisfy that need. My favorite is chocolate pie, not that I turn down cakes, cookies or other pies.

MS reminds me of a pie being cut.  There are all these little pieces that go together to make a whole.  Each piece is only a small part of the whole picture. 

Most people who don’t know much about MS consider it a disease that cripples.  This is true, but not always so.  Unfortunately, many that have MS end up in a wheelchair and need around the clock care.  Some cannot feed themselves, dress themselves or do anything with their arms and legs.  This is the extreme side of MS.

Many with MS carry on their work life, home life and social life with few adjustments.  They many have to take medication for pain or sleep, but can function fairly normal in the outside world.

Most of us fit in the middle of all this.  We deal with cognition problems, walking issues, pain, sleeplessness, buzzing, speech and many more symptoms.  Each symptom causes problems with being able to function properly in everyday life.  Although most of us will not be totally dependent on someone else to take care of us, most of us do have to have help with our everyday lives.

 We all like to think that we have our lives together in an orderly fashion.  With MS, we learn that having pieces all jumbled around out of order is the norm for us.  What may seem like a very disorganized way of doing something may be the only way that we can get it done. 

All in all, life is good.  No matter what goes wrong, it usually straightens out after a while.  We just have to be patient and wait on the good part to work its way back around to us.  Each piece of us has its own place and hopefully will get back where it belongs and be a help to us rather than a hindrance.

While I’m waiting on all my little pieces to get back in order, I think I would like my piece of chocolate pie please……………with a lot of whipped cream on top!

45 on a 33

I don’t know how many of you remember the old 45 records and 33 records.  They were the CDs of my younger years.  The 45 records were little things, about the size of a salad plate and the 33 records were platter size.  If you played a 45 record on 33 speed, it sounded like someone on an LSD trip.  (I guess, for those of you who are younger, think of what it is like to try to watch a movie on a tape that has stretched and drags.)

People have tried to interpret the words to songs on records that were not clear for years.  One of the funniest parts of “Jumpin Jack Flash” is Whoopi Goldberg trying to figure out the words to the song by the Rolling Stones.  One of the most bizarre incidents of this was when Charles Manson tried to claim that he heard certain things in the Beatles’ song “Revolution” that made him try to start a race war.  He did manage to get his clan to kill several people.  It was a terrible, tragic event.

I had an event last week that made me think about being on the wrong speed.  I was reading a book when I realized I was just staring at the page and not comprehending the words.  My eyes were blurred and when I tried to put the book down, it was like I was moving in slow motion. 

When I stood up, the same feeling of being on the wrong speed made me walk slowly (which I do anyway) and in a dream-type state.  I tried to say something to my husband and the words were slurred and hard to get out.  It really scared me.  My first thought was that I was having a stroke.

Although this lasted no more than half an hour, it really made me worry.  I have had quite a few seizures and often came out of them with slow speech.  I have not had this feeling when not having a seizure.

According to the National MS Society, 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.  Slurring words and abnormally long pauses between syllables and words are common with this condition.  I guess we should be happy we can talk and be understood!

I hope this doesn’t happen again.  Maybe I will look on Amazon and see if there is an old stereo for sale in reasonably good condition.  That way if it does happen, I can flip the speed over to the right one and get myself back in gear!

Over the River and Through the Woods….

When we’re young, there are certain ages that we look forward to reaching.  Most of us wanted to get to 13 and start our teenage years, or reaching 18 and being “adults”.  When I was young, everyone was anxious to reach 15 ½ years old.  When we became that age, we could take driver’s education.  It was such a thrill to get close to the time that we could try to get our license and be independent.  Everyone signed up for the class and looked forward to each Saturday morning going out with our instructor to learn to drive.

I miss that thrill.  I have not driven for almost 2 years.  There is a special kind of freedom knowing that you can go out, get in your car and travel someplace.  Having to have someone drive you every place you go is fine.  Being able to take yourself is so much better.

I think most people who see those of us with MS don’t realize the freedoms that we have to give up.  A lot of people love to be waited on.  It is a privilege that only the rich usually can afford.  They are the people who CHOOSE to give up these freedoms.  We have no choice in the matter.  It is a whole different thing to be able to choose giving up something and being forced to give up something.

Most of us get up each day and decide what we will spend our energy on.  Energy is something that is a rare commodity with MS so it has to be used wisely.  If the laundry needs done, we have to chose whether to do that or possibly cook a meal.  Doing both is usually out of the question.

My heart goes out to those who have MS and small children.  I don’t know how they keep up with the demands of taking care of them and still getting their own needs taken care of.  It has to be a struggle that is beyond my comprehension.

My husband takes on a lot of the burden of my care.  He helps me with my shower, brings me coffee in the mornings, takes care of the finances, helps me dress and a million other things…..including doing all the driving.  I appreciate his willingness and eagerness to do this.  I just wish he did not have to.

It would be nice if we could go back to the horse and buggy days.  Most people went the same places so often that if you got hurt or something, the horse could find its way home without any guidance.  Many of us with MS play Frontierville and other games on Facebook.  I have a horse that I ride around my homestead and use to visit my neighbors. It is fun to develop your homestead and interact with other people.  Unfortunately, for a lot of us, it is the only “mobility” we have each day. 

I really like my horse………it is a shame Thunder is not real.  I would love to ride around on him and have my independence back.  I think my pigtails and cowgirl outfit are neat!  If you get a chance, come on over and visit and we will ride around together!

No Pills, No Sleep!

My husband usually goes to bed several hours before I do each night.  Like most with MS, sleep is hard to come by and the longer I stay up, the better my odds are of going to sleep when I go to bed.

I usually spend that time reading and/or watching TV.  I have several medications that I take at night to help with pain, buzzing, sleeping and restless leg syndrome.  Without these, I don’t sleep……..period!

Most of my fellow MSers have the same problem with sleep.  Most of them take something to help with this problem.  Unfortunately, even with medication, we often don’t sleep.

According to the National Sleep Research Project, the record for the longest period without sleep is 18 days, 21 hours, 40 minutes during a rocking chair marathon. The record holder reported hallucinations, paranoia, blurred vision, slurred speech and memory and concentration lapses.  Uh, sound familiar MS family???!! 

Here is another one for you MSers: To drop off to sleep, we must cool off; body temperature and the brain's sleep-wake cycle are closely linked. That's why hot summer nights can cause a restless sleep.  We always knew heat was our enemy and now we have another reason to believe it!

Most of us try to take several naps during the day, but often have trouble doing so.  For some reason, MS and sleep do NOT equal!

My husband suggested this blog.  A couple of night ago, I went to bed and tossed and turned for almost two hours.  My legs were twisting and hurting, I was sweating and could not find a comfortable place on the bed.  After a while, I decided enough was enough and sat on the side of the bed and waited to get steady before I tried to get up.  This, of course, woke my husband.  He offered to get up with me and we went into the TV room to try and see if sitting up a while would help.  Glancing over at the lamp table we saw my nighttime pills.  I had not taken them.

In some ways, it was a relief to know that I had forgotten them.  At least there was hope in getting some sleep that night.  Sometimes we do the same things each day and take it for granted that we have done a certain action. 

So, I took my pills and we sat and talked a while.  When we went back to bed, I finally fell asleep.  It is good to know that some things DO work on a fairly regular basis……..although my brain is STILL not in that category!!!

A Daffodil Story

Unless something unforeseen arises, five days a week I write this blog.  On each of those mornings, my husband will go upstairs to his study and read it.  When he comes back downstairs I always asked him how it was.  “It was great,” he says.  “But you say that every morning,” I tell him.  “It is good every morning,” he replies.  “But would you tell me if it was stupid or didn’t make sense?” I ask him.  “Of course I would,” he replies. “But I think you could write about daffodils and it would be interesting because you always relate something routine to your problems with MS.”

So, here goes my blog on daffodils as related to MS: 

I love flowers, as do most people.  They come in so many shapes, colors and sizes that there is some kind for just about everyone.  Daffodils, also known as narcissus, are a spring flower native to Europe, North Africa and Asia. 

Like flowers, MS comes in many shapes and forms.  Each of us with MS has a variety of symptoms ranging from moderate to severe.  Some MSers become unable to walk or use their arms and hands and have to have someone to take care of them.  Others can function reasonably well and continue to work and take care of themselves with little problem.

Most of us fall into a middle of the road category.  We have trouble sleeping, extreme fatigue, pain, difficulty walking and other problems.  Each of these problems by themselves is difficult to deal with, but when you combine them with others, it makes for a hard time coping with every day activities.  Most of us try to take care of ourselves the best we can, but need help with a lot of routine chores.

I guess in some way we are like daffodils or other flowers.  Although on the outside we may look fine, on the inside we are struggling.  Many flowers are beautiful but dying inside as fall and winter approach.  Those of us with MS are always on the verge of a winter storm.

Flowers stand straight and tall in the spring and summer sun.  The rain makes them strong and they glow with health. Most of us with MS do our best to stand tall and try to put our best foot forward every day that we possibly can.  Unfortunately, the winter storm within us often makes us droop like a flower in the cold.

The good thing is, like flowers, we are residual and will bounce back at every opportunity and stand tall.  We try to have an outward shine even if our insides are more of a blizzard!  How was that for a daffodil story???

A Rose By Any Other Name

"A rose by any other name would smell as sweet" is a quotation from William Shakespeare's play Romeo and Juliet.   It means that the names of things do not matter, only what things are. I have an issue with that statement.

I was in a Lamaze class with ladies giving birth for the first time and some that had already given birth.  The instructor was a young lady that had never given birth.  This was obvious after a few classes.

In that class, the instructor told us that when we realized we were in labor to lay a certain way and to pant instead of holding our breath or breathing deep.  She said that we would know when we were starting the birthing process because we would start contractions.  One lady asked if she mean birth pains and she said no, that contractions were not pains.  Several in the class burst out laughing, me included.

For all you men reading this, or women who have not given birth, contractions and pains are one and the same.  There is no distinction between the two when you are experiencing them.  If you hurt your back, you often have spasms.  I think it safe to say that these things called spasms can also be categorized as pain.

I have the same issue with some of the symptoms those of us with MS have that are not considered pain by most doctors.  The electric shock/buzzing that most of us experience, the MS “hug”, muscle spasms and spasticity are just a few of the things that cause us pain that have only recently been acknowledged by some doctors and the National MS Society.  Until the last few years the Society and most doctors believed that MS was a debilitating disease that was without pain.

With the onset of some of these symptoms being recognized as “real pain”, the offering of more drugs and different types of tests have been developed.  It is wonderful to know that more and more people are listening to those of us that have this disease and not just taking for granted that textbooks have all the answers.

As far as pain in concerned, most people have experienced it in some form or the other.  I guess we could call it Sam, John, Lucy, Judy, George, Ruth……….or whatever…………but the feeling would still be the same!!!