Put On A Happy Face

Everyone is so excited about the Spring-type weather we are having.  I wish I could be, but MS and warm weather do NOT go together.

Wearing shorts and short-sleeve shirts are nothing new to me.  I wear summer wear most of the year.  Getting out and seeing the trees and plants blooming is beautiful…….but I know that it is warm for them to be able to do this. 

I feel like a humbug!!  I would love to have the thrill of wanting Spring and Summer to come.  I would love to get out and plant a garden and be able to tend to it.  I would love to go on long walks in the warmth.  All of this is lost to me.  They are sweet memories, but will never be in my life here on earth again.

I am not complaining.  I simply say this so the people that enjoy this and don’t understand why I don’t might be more understanding.  This is life to those of us with MS.  We would love to be doing the things that you do.  But that is not in the picture for us anymore.

People have told me that I have a great attitude with all the things I go through.  I don’t see me that way.  I see someone who has chosen to enjoy the things she can still do and not think about the things she can’t.  Although dreams still pop in my head sometimes, I quickly push them away.  Dwelling on these things is what makes some bitter and unhappy.  I don’t want to be one of those people.

Life is good!  Enjoy what you can and leave the rest to those who can.  It is a simple philosophy, but hard to get started.  Thinking this way takes practice, but is well worth the effort.

No one wants to be around a whiner/complainer.  Neither do I.  Taking the time to try to set a new mindset can make all the difference in a good life and just being alive.

My heart breaks for those who dread each day.  I wish they could reach inside themselves and pull all the bad out.  I wish I could help them.  But, it is like having a drinking, drug or other problem that takes rehab to break.   We each have to make the decision to seek help or find a way to do it ourselves.  No one can do it for us.

Looking at life with rose colored glasses is not what I am saying.  There are many horrible things going on in this world that cannot be ignored.  Pushing them out of our minds will not make them go away. 

But in the case of dwelling on the problems that come with a chronic illness can be pushed away to an extent.  It is hard, but look in the mirror.  Wouldn't you rather see someone who looks pleasant, or someone who looks like they are miserable?  Everyone else wants pleasant also!!

If It Ain’t Broke…………

I am beginning to realize just how little I know about a computer. The more I try to do on this new one, the less I know.  When I try to look up “how to”, it only confuses me and makes me even more lost than I was to begin with.  It is so very frustrating.

I used my first computer while working for a law firm.  It was fun to try out this new way of doing things and learning how easy it was as compared to typing out everything by hand.  The only problem was, although I learned to use their computer fairly easily, it was not really learning how to use a computer program that would be helpful to me later.  The programs were written for legal documents and letters and did not teach basics that could be used in day to day computer use.  Luckily, when I changed jobs, it was with another law firm and my new-found skills were very useful.

My next job, however, was with The Parks and Conservation Department.  Their computers and programs were in the normal range of such thing and I was at a loss for a while of how to use them.  I was sent to classes (which basically consisted of them giving us a book and telling us to read a chapter and ask any questions we might have) to learn the basics.  Fortunately, I learned that I knew more than I thought I did and transferred my knowledge to a regular system instead of a legal system.  It worked well for me for years. Now, however, I am running into problems.

Most of the programs on this computer are in the normal range, word, excel and such.  I have my usual games and other frivolous ones as well.  I know that I have not had any computer training in years, but I have managed to maintain being able to do the things I needed to and enjoy.  It is becoming harder and harder to do this. 

Although Word is Word on most computers, both older and newer, it is beginning to be more and more complicated to do the simplest things with it.  What I used to be able to do easily, I now find quite complicated.

Like most people my age, I am not interested in going back to school to learn something all over again.  It there was something I became really interested in it would be a different story.  But this is an old thing that is something I conduct business and pleasure with and not a new exciting thing.  As such, I will just have to plow along and try to manage as best I can.

It is nice to constantly upgrade things to be able to do more and work more efficiently. But the parts that already fit into that category should be left alone.  As the saying goes, “if it ain’t broke, don’t fix it”!

Here’s Looking At You Kid

Remember Bogart saying that in Casablanca?  It was a great line that has been repeated a million since that movie.  I’m a sucker for old movies, although some are a lot more boring than they used to be.  I guess we have been spoiled by all the things that can be done in movies these days.  Some of these remakes though, no matter how many special effects and big named stars are in them, can’t hold a candle to the original.

I often feel that there are people looking at me.  If you are handicapped in any form, you have probably felt that way also.  If not, I am sure you have seem people stare rudely at a person who is the least bit different than they are.  With young children, it can often be dismissed.  Older children, teens and adults cannot be excused for doing this.  Bad manners is bad manners and there is no excuse for them.

I have been looking at something in a store and having to lean heavily on the cart or counter in order to do so.  Many times I have “felt” someone looking at me.  I sometimes look sideways and sure enough there is.  Usually they turn away quickly and pretend they were not looking.  Once in a while there is a real jerk of a person who just keeps staring.  I sometimes just stare back at them or roll my eyes at them and go back to what I was doing.

Many people (and I am ashamed to say I have done this also) will turn all the way around to look at someone who is totally out of the norm of things.  Like someone who has clothes on that are so tight they look poured into them; someone with an outlandish hairstyle; someone who is loudly vulgar, etc.  My mother always commented on girls having odd colored streaks in their hair.  She would not listen when I tried to remind her that grandmother and most of her friends always had a blue or purple tint to their grey hair.

When I was young, children used to get smacked for staring at people, especially if they were handicapped and/or sick looking.  I remember when my son was almost three and went up to a pregnant lady and asked her why she was so fat.  I was very embarrassed by this but did not punish him since it was a legitimate question and not meant to be cruel.

With adults being almost more crude and rude than younger people, I am wondering just how quickly I would be arrested if I just walked up to one of them and slapped them.  I imagine it would be pretty quick.  The adults do seem to be much worse than the kids anymore.  I often wonder who raised them and if they were ever sorry to have not provided them with better guidance and discipline.

As I sit here typing this, I can feel eyes on me.  Glancing around I see that Buffy is standing on the arm rest of the sofa and watching my every move.  Even though she IS a spoiled brat, it is not a punishable offense.

As I look the other way, I see this:

 

I have eyes on me no matter which way I turn……….I guess that is a warning that I had better watch my step and behave!

 

Ahoy Matey!!

Lately I have been having a lot of problems with my vision being blurry.  As I have said before, often it seems like I am looking through plastic wrap.  The optometrist changed my computer glasses, but the reading ones I have just do not work for very long.  The more I try to focus, the more unfocused I seem to become.  Therefore, I really don’t read much anymore.

I have an MS friend who wears an eye patch.  He is practically blind in that eye and it hurts to be exposed to the lights and elements.  He has put several pictures of the different ones he has online.  Some are really cute.

My eyes hurt a lot.  Usually it is one eye that pounds in pain, but sometimes both of them do.  I am wondering if an eye patch might help during those times.  Maybe if the eye that hurts is cut off from its surroundings it might feel better.  Just a thought……….

Like with most things that come up, I wonder if there are things already “out there” to help with the problem.  I am presently looking at all the eye patches on the market.  Most are basic black in different shapes.  There are some really cute ones for kids.  I am not sure I have found the one that I might want in the future.

As with all things medical, I would have to discuss this in depth with my optometrist.  He is a really nice guy and does not mind trying to answer any questions I come up with.  I am sure he would get a kick out of the eye patch question.  He might even want one for himself.  It would have to be UNC blue I am sure!

I was thinking that if I do have to buy a patch one day, I could get a pirate one.  I even have a bird (Hadji) to go with it.

 

I was looking just now and I think I have really found the one I like.  Peacock feathers anyone??!!!

 

 

 

Passing It On

A few years ago there was a movement called “Pass It On”.  The concept was that if you do something for someone, no matter how small, there is a good likelihood that someone will see it and want to do something for someone else.  It is a wonderful thought and hopefully is happening all around the world at this moment.

I read some of the comments on MS sites and blogs by people with MS and other diseases.  I love it when one of them comments on trying a different drug, a different lifestyle or a different attitude.  By “passing on” information, we can all help each other with decisions we need to make about our own condition.  It is great when someone comments on something you have been thinking a lot about.

Part of the reason I began to write this blog was to “pass on” some information that those without MS or Crohn’s might not have known.  Most people who are not directly involved with either of these would have no idea what goes on in the everyday life of someone suffering with these things.  To say “some days I cannot walk” is not nearly as explanatory as an example of the same told in story/blog form.  I know that I have learned so much from other’s writings about many diseases and everyday life struggles.

I think some of the reason that people don’t write about some of the things they go through with drugs is because they don’t want to encourage or discourage others.  If a drug really improves someone’s daily walk with a disease, they may want to praise it, but fear that someone else may not have this outcome from it.  If others have great improvement with their MS symptoms with a certain drug, I would most likely want to try it.  If it did not react in me with these same results, it would be so discouraging and really put me in a slump emotionally. 

If someone had a horrible time with being put on a treatment, they would certainly not want to have a good review of it, but might be hesitant to slam it.  As I said, just because something does or doesn’t work for you does not mean it will or won’t for me.  If someone discourages the use of a treatment because it failed them it might keep someone that the treatment would help tremendously from trying it. It would be such a horrible thing for this to happen. It is a real Catch 22 situation.

Passing on information to those who do not struggle with the diseases we have has helped so many to change their ideas about people who have these diseases.  Many family members and friends really had no idea what a “day in the life of” people with diseases is like.  I hope those of us who try to tell others about this helps many who have had people treat them badly and turn away from them.  It is so sad when I hear about these stories.  Hopefully some of this will stop as more information is passed on to them.  It is the dream we all dream.........................

Hooked On TV

The last few years or so, I became an avid reader.  I think that is true with most people who love to write.  Getting lost in the words of another is almost as good as writing your own.  I do not have a particular type of book I like to read.  I have read everything from the Harry Potter series to Agatha Christy to Biblical stories to biographies and enjoyed each one of them.

Unfortunately, over the past six months or so, I have been unable to read much.  As my eyes have gotten more blurry and weak, reading very much has been virtually impossible.  It is something I have really missed and hope that it will one day be in my realm of things I can do again.

I know for me, and most others that have a disease like MS or Crohn’s Disease, it is hard to adjust to the changes that we have to make in our everyday lives.  Many of my online MS friends have written about this and we all agree that it is a symptom that most doctors and others in our lives seem to dismiss.  Doctors cannot see it on their MRIs and other tests, so it is of no concern to them.  Most of our family and friends do not consider this a problem either because they cannot see any sign of this problem.  It is another of those things that are hidden from view, but very read to those of us suffering with it.

Most of us try to be as prepared for things that can happen as we can manage to be.  If it is getting close to winter, we have our furnaces checked out to make sure that it will keep us warm when the cold weather comes.  If it is getting close to summer, we have our a/c checked out to make sure that it will keep us cool when the hot weather comes.  We check the tires on our car to try and make sure they are safe to drive on.  We check the groceries in our home to make sure there is something to eat when we get hungry.  There are many things we can try to be prepared for.   Some things we can’t.

In a strange kind of way, I almost wish that MS and Crohn’s had attacked me when I was younger.  I know that may sound strange to most of you.  But, if you consider it, having both of these PLUS getting older hit me all at one time, it has been really hard to deal with.  I knew that as I reached a certain age my body would start to slow down and things would be a little harder to do as each year passed.  With my two diseases plus getting older, I sometimes feel that I am nearly at a stand-still.

We all have things that are hard to deal with.  I think, for the most part, I am dealing fairly well.  I know that if I get too whiny Howard will let me know!  I made him promise to because I do not want to be that way.  I also watch carefully to make sure I do not start sitting on that pity pot.  I keep the lid down and a cactus on top to keep me from not doing so.

I guess that watching TV has become my “hook” to take the place of reading.  Although I really don’t enjoy TV the way I enjoy getting engrossed in a good book, I am adjusting.  There are so decent shows and movies on and I have been able to keep myself occupied so far.  I am thinking of trying out a Kindle.  One of my friends told me that you can blow the words up and read fairly well with one.  I wonder………….sure would be great to read again………..

 

IT DON’T COME EASY!

Don’t let anyone tell you that starting a new life is easy.  It is not.  It feels like Howard and I have just begun our lives together and have to begin to set up a routine that fits us.  I hardly know where to begin.

Most of the last ten years have been spent taking care of Mother.  Although five of those years I was working, the last five have been trying to make sure all her needs were met.  The hardest part was adjusting to the fact that I am no longer the person I was ten years ago and have to really struggle to take care of myself, much less trying to care for another.  I say this part was the hardest because she has yet to understand how MS works.  I know that is a common problem for those of us with MS.

There are so many aspects of my life that have changed in the last few years.  One of the scariest ones, to me, is the loss of my comprehension.  I really become agitated as I search for the words to say what I am trying to get across to others.  It is a fear I share with many of you.  Searching for the word for the picture I have in my brain is often like putting that camel through the eye of a needle that Jesus talks about!

Many people have told me not to worry because it is just a part of aging.  I appreciate their encouragement, but they have no clue as to what is going on in my brain and body.  Yes, we all age every day, but with MS is often is a quick thing rather than a gradual thing.  To suddenly go from being able to comprehend anything put in front of you, to struggling with the simplest of things is a change that is not understood by most people.  It is frustrating, frightening and no medication known can change it or stop it.  It is something we have to learn to adjust to and go on with our lives.  It is not easy.

People that are not around a person with MS on a daily basis are often shocked at the change.  The MS patient often has lost a lot of mobility, speech, comprehension and the ability to emotionally handle the things that were not a problem in past years.  Most of us have lost a lot of “friends” this way.  It really hurts when that happens.

I say all this to relay to you how I feel…………….although it is a dream come true for us to have a home to ourselves again after so long, it is really hard for me to adjust to it with all the changes MS has brought to the table after ten years.  I have the same hopes and dreams, but more and more of them are beginning to be out of my reach.

 

No, I don’t feel sorry for myself.  I am just trying to be honest and face the fact that some of the things I dreamed of doing when I retired have to be rethought.  Some of those things will have to be discarded and replaced with things more in my reach.  So far, I am finding that there are many things I can still do (MOST days) and enjoy.  I am learning to enjoy new things that I never really thought about before.  All in all, I am adjusting to a new life pretty well. 

But, as Ringo once sang: