Friday, August 31, 2012

Spiderwebs


Have you ever really looked at a spider’s web?  It is a really pretty, intricate  production.  Especially when it rains and little water droplets attach themselves to the web.


 I really like them, unless I walk into one and it gets all over me.  Then I start panicking about a spider crawling on me and getting caught in my hair or something.  I am not really afraid of spiders, I just don’t want them crawling all over me.  I like the beautiful work that spiders do in making their webs.  I just wish they were not all over my house.

I was sitting in the shower this morning and looked up.  There was a spider web in the corner way up on the wall.  It is not the first one I have noticed lately.  I was reading some comments from others yesterday and they said that they also had really become aware of how messy their homes are as compared to years ago.  Mine is getting to the point of ridiculous!!

My “dust bunnies” are having babies like crazy!  Don’t they realize that mating season is supposed to be in the Spring??  I can’t believe how dusty and dirty my home is becoming.  I really worry about it.  Unfortunately, worry is usually the most I can do about it.

I have tried to keep up with sweeping and such as much as possible.  My energy level, plus the unsteadiness of my balance, does not allow for me to put a lot into housework.  My husband is very patient and understanding of this, but understanding the problem does not get things done that I want to do.  I am so frustrated!!!

I am going to try and make a list (back to that list thing!!) of all the things that I need to get done and see how many I can mark off by the end of the year.  Not a New Year’s Resolution, but a need to do type thing. 

I know that I am not alone in this problem.  It would be nice to have the money to have someone come in once a week or so and do the deep cleaning around the house.  The only thing with that is that I want to do it myself.  It is one of the things that I have always really taken pride in.  I love seeing how good something looks when you clean it.  I am a “Susie Homemaker” at heart and love taking care of my home and making it look nice.  I love sewing, crafts and  trying out new cooking recipes.  I would love to be able to do these things again.

In talking with people who do not have MS, they just don’t “get it”.  They always tell me to take my time and I will be able to get it all done.  They say to not get upset about it because I will be able to do these things in the future.  Wrong on both counts!!! MS is a monster that does not take a break.  That does not mean that there are not days I  can do more than I can on other days.  But it does mean that I am not likely to suddenly be able to do all the things I want to.

Oh well………there is always the possibility that I will lose my list in all the clutter and mess around the house and not have to worry about it!

Thursday, August 30, 2012

Adjustments


I have really become aware of all the adjustments we are making as our lives are changing.  They have been happening all along, but I guess I have just recently become really aware of them.

My husband is beginning to lose his hearing.  More and more I have to repeat things to him and tell him things that other people say that he does not understand.  Many times he will ask me what is being said on the news or a tv show that we are watching.  I really don’t mind repeating things to him as he is so patient and helpful with my problems.  This hearing loss is a minor thing to deal with for me as he deals with so much in my life and never complains.

I have noticed that when I walk up behind him I put my hand on his back to let him know I am there.  This is so he won’t turn and accidently bump into me and possibly make me fall.  Not only do I not want to fall but I don’t want him to feel guilty for causing it.

When I walk through the house, there are things I watch out for that I would not have even noticed in years past.  The different rooms in our house have different types of flooring.  Each room has a piece of edging or trim to join to the next room.  Although they are not sticking up or seem like a major obstacle to most people, I step over them carefully so as not to trip.  Something that is nothing to the average person is a hurdle that I have to be careful of or end up tripping and falling.

Another thing is answering the phone.  Years ago, if the phone rang, I would just jump up and answer it.  Now, I have to get up carefully, make sure I am steady, and try to get to it before the answering machine kicks in.  If I am not near enough to it to do so, I just have to call the person back.  Sometimes I have to do this with the cell phone also.  Often when it rings, my fingers and brain are not on speaking terms and I cannot seem to get coordinated enough to hit the answer space.  Thus, voicemail kicks in.  It is frustrating, but another one of those adjustment areas that have to be dealt with.

The stairs, of course, are a biggie.  Running up and down the stairs are a thing of the past.  I never go up or down them alone anymore.  My husband stands behind me when I go up and in front of me when I come down them.  I come down them each morning and go back up them each night.  I have learned to try and have what I need from upstairs to bring down with me each morning because I will not be going up them again until night.  I do not want to have to ask my husband to run up and down them all day for some little something I want and forgot to bring down that morning.

Blogging is another adjustment I am learning to deal with.  Not the blog itself……I love writing this blog.  But when I have an idea for one, I have to get to a piece of paper and write it down immediately or it is gone from my brain.  There is no such thing as I will jot that idea down later, because later it will be gone.

In the past I would rearrange the furniture several times a year.  That is now a no-no.  Things are where they need to be in order for me to have “crutches” along my paths through the house.  If things were moved very much, I would have open spaces that would cause me great stress to walk through.  I am sure that most of the time I would be OK with a small open space, but the thought of it gives me so much anxiety that I do not want to risk it.

I am sure that all of you have many things you could add to this list.  I have more, but you get the idea of what I am saying.  I wish our lives could be more stable and all these little things did not make a big thing, but it does and we have to learn to live with it.  I know that the saying that problems dealt with makes a person stronger and I am really beginning to believe that………….so……..here’s to all you really strong people………..keep hanging in there and we will all make it in this war together!!!

 

Wednesday, August 29, 2012

The Grass Is Always Greener……..


Most of us dealing with MS have a buzzing/tingling/numbing feeling most of the time.  It is usually in our hands, feet or face, but it is definitely something that drives us crazy after a while.

I was thinking how wonderful it is to have my foot back from being numb, but now it wants to tingle/buzz really strong.  We always think the grass is greener on the other side of the fence, meaning other things look better than what we have.  Obviously, that is not always the case.

I would, of course, rather be able to walk than not to.  But having this extreme tingling sensation is not pleasant either.  Maybe I am just not going to be satisfied with any of the problems with MS!  I doubt anyone else is either.

I read a lot of blogs and articles MSers write.  Many times, the people writing them are having terrible problems with their MS and I feel so sorry for them.  Not only the physical problems but the mental ones can really take their toll on a person.  Sometimes the writers are doing really well and I am a little envious of them.  I don’t wish any problems upon them, but just wish I was doing as well as they are.  As I said, most of us can always find someone we wish our lives were mimicking.

The only problem with that is there are enough problems for everyone to have their share.  Some that are having very little problems with their MS are suffering terribly with emotional problems.  Their friends and families are not standing by them and they are left out in the world to face whatever comes up on their own.  Most do not feel they are strong enough to go it alone.  My heart goes out to them.

Many times, what seems like a small physical problem is really a “biggie”.  If we had to deal with it ourselves, we would keep the problems we have.  As most with MS know, there are no small problems when you deal with them day in and day out.

I often daydream about how it would be to go back in time when I was able to do the things I wanted to……..when my energy level was high and I was reasonably coordinated and my brain working pretty well.  The only problem with that is that I don’t want to go back and relive some of those years.  I really like being older in that I don’t have a lot of the pressure that most of us have when we are young.  I don’t have to worry about a job, young children, and trying to keep up with everything else that goes with keeping a household together. These days, I can walk around in my bedroom shoes all day if I wish, have cereal for dinner or take a rest any time during the day.

Although the grass often looks better on the other side of the fence, there are usually drawbacks that we would not have wanted to face had we known they were there.  I think I’ll just stay on my side and deal with my own problems!

 

Tuesday, August 28, 2012

The Return of the Foot


OK, my foot is back.  But it sure is tingly.  I am very hesitant to trust it.  I guess, having fallen before, I just do not want to repeat the process.

All of us have read or seen things on people who have lost limbs for various reasons.  I know that many of our servicemen and women have lost arms, legs eyes and other parts in war.  Many people have had to have parts of their body amputated because of disease.  Others have been born missing certain parts of their body.  Each case is very sad and my heart goes out to them.

I remember when I was young that there were cases of people cutting off their arm or leg with a chain saw to get disability.  So many were out of a job and their families were starving.  They thought this would get them through a bad financial situation.  I hope I would never resort to something that radical.

Maybe this is God’s way of reminding us that we should be thankful each day for all the blessings we have.  I know that we moan and complain a lot about all the things we have wrong with us.  This is normal.  But maybe we should take a little time out each day and be thankful for all the things we DO have going right that many others do not.

I am trying to be very nice to my prodigal foot.  I don’t want it to wander off again. Vacations are nice, but you should always have a backup to handle the things that you normally do.  No matter the reason it left, I am glad that the foot has returned. I am really thinking of throwing a welcome home party!  You are all invited!!

Welcome back, my foot
I missed you so
Please stay with me
And nevermore go!!

Monday, August 27, 2012

Where Is My Foot????!!!!


Yesterday was a pretty good day as far as getting a few things done.  I usually don’t get to do too much because of fatigue issues and stumbling around.  I was able to get the laundry taken care of and fixed a meatloaf, creamed potatoes, green peas and a fruit salad.  I was feeling rather proud of myself.

That feeling was not to last.  I sat at the computer (which is my normal place to be!) for a while in the late afternoon.  When I tried to stand up, my right foot was nowhere to be found.  It was like trying to walk on a sponge that just keep sinking down and did not reach a solid level.  I found it very scary, since there was no way to know when/if it would return and when the next episode would occur.

The MS Society website states: “Numbness of the face, body or extremities (arms and legs) is one of the most common symptoms of MS. Often it’s the first symptom experienced by those eventually diagnosed with MS. The numbness may be mild or so severe that it interferes with the ability to use the affected body part. For example, a person with very numb feet may have difficulty walking. Numb hands may prevent writing, dressing, or holding objects safely. There are no medications to relieve numbness. Fortunately, however, most instances of numbness are not disabling, and tend to remit on their own. In very severe cases, a neurologist may prescribe a brief course of corticosteroids, which often can temporarily restore sensation. ”

I always get such a laugh reading some of the MS “official” sites.  Take the above, for example.  When saying that most instances of numbness are not disabling, I guess it depends on your point of view.  I found that not being able to feel my foot was VERY disabling!  I guess it depends on if you are the one writing about it or the one experiencing it!

In an article by Julie Stachowiak, Ph.D on About.Com, she says: “I understand intellectually what the medical writers and physicians mean when they refer to MS-related numbness and tingling as “only an annoyance,” “not disabling,” or a “benign” symptom. However, it is language like this that informs me that the writer has probably never experienced this symptom. Holding nothing against these people who are trying to help us, I’ll say that for myself, the itching, burning and tingling was a minor form of physical and emotional torture. The time when I felt the most alienated from my neurologist was when he responded to my question concerning how long this would last and what could I do to make it stop with a smile and a shrug.” 

As I have said before, I do NOT wish this disease on anyone, I just wish the medication profession could realize that everyone does not fit into a box, our symptoms are not always the same and “take two aspirin and call me in the morning” does NOT help!

 

Oh foot, my foot

You, I cannot feel

I’ve prodded and poked

But you just don’t appear real.

You seem like a blob

That’s attached to my leg,

I feel like a Pirate

With a strange wooden peg.

When I try to stand

On this soft squishy thing

It makes me afraid

Of the fall it might bring.

So I sit here and wonder

If you will come back

Or you’ve left me alone

With a panic attack.

I hope you’ll return

I will welcome you with glee

And hope that you won’t ever again

Decide to flee from me.

I love you my foot

I miss you so much

But until you return

I guess my best friend is a crutch.

(NOT my foot, by the way!!)
 
 
 

Friday, August 24, 2012

……Checking It Twice!


I love a rainy day!  Actually today is not raining, but it is overcast and what some would call dreary.  I call it wonderful!  It is not so hot and humid, which seem to have been the norm for this summer.  Sometimes it is nice to just sit inside and look outside dreaming of things to come…………like Thanksgiving, Christmas, snow, leaves changing colors and all the wonderful things I associate with Autumn and Winter.  This is my favorite time of the year and I am really getting excited about it.

One of the things I really enjoy is decorating the house.  So far, I have made the wreath for the front door,
 
decorated the Butler’s Table in the living room
 
 
and decorated the Tea Table in the foyer.  (I really wish the "maid" would polish the silver but she is sooooooooo lazy!!)
 
 
 
We hope to go in the morning and get some more things to finish decorating the house with.

I guess these things are exciting to me because they are some of the few things that I can do.  I can stop and rest when my energy gets really low and it won’t interrupt anything.  You can’t do that cooking, cleaning and such.  You can decorate at your leisure and no one is bothered or upset by it.

Most people that aren’t bothered by MS or some other disease have no clue what it takes out of us to do simple little things.  Most people work, do chores around the house, have leisure time and still have energy left over.  Those of us with MS are happy if we can just get one thing done a day.  I remember those days and feel guilty that I did not appreciate them as much as I should have.

As most of us know, one of the things that is so hard to make others understand is our total lack of energy.  As I have said before, tired does not even come close to what we feel.  I was dragging yesterday.  Putting one foot in front of the other was not an option.  My right foot has a tendency to want to drag and I am constantly aware of the danger of it tripping me.  I have absolutely NO desire to break something else!

I always knew that as I grew older I would slow down.  It is something that happens to everyone if they live long enough.  Our bodies as well as our minds start slowing and we either accept it or are totally miserable.  I know some with MS who are very young and this is a terrible problem for them.  It is so sad but something they will have to come to terms with on their own.

As it is, I have started a list, but it frustrates me to look at it.  The list keeps growing and very few things are marked off of it.  I am still checking it each day in the hope that I will get to mark something off……….maybe I will wait until tomorrow to look at it again………..or put it off over the weekend……….Monday might be a good day…….or whenever!!!

 

Thursday, August 23, 2012

Not Rising To The Occasion


One of my aunts is blind.  She stayed at home until a couple of years ago when she fell down the basement steps trying to carry wood down to the stove.  She was told many times not to do it as she might fall.  When she fell, she crushed her wrist and arm and it is no longer useful to her.  They put 38 screws in it because it was crushed in so many pieces.  She is now in a rest home because she needs a lot of care.

I guess that she is one of the reasons I try to be very careful and not do things when I know that I should not.  I do not want to be in the shape she is in out of stubbornness.  When my legs are like wet noodles, I do not need to be walking around a lot and especially trying to go up or down the stairs.

My husband took my mother to see my aunt this morning.  It is about a thirty minute drive from our house.  I really wanted to go, as she is so very sweet and special to me.  She is very precious and I have a lot of wonderful memories of spending time with her when I was a young girl. 

But my legs were a little bit like jello today.  It is a fairly long walk down two hallways to get to her room.  My husband suggested that I stay home and just chill out while he took mother for the visit.

I enjoy time by myself.  Being an only child, I learned a long time ago how to entertainment myself and be content alone.  Today was not one of those times.

I kept thinking about my aunt and all the problems she has.  I always look forward to seeing her as there is the possibility that it could be the last time I see her alive.  Not that I could not die before she does, but the way things are, it is not likely.  Not seeing her today made me very sad.

Or maybe I was just sad anyway.  Although I hate to admit it, I have days when I just can’t get my act together.  The doctor has put me on some medication for this, but I don’t think it is really helping.  I have always thought of myself as optimistic, but some days I just can’t seem to rise to the occasion, as people used to say. 

There is a website that tells the meaning of old sayings and such, and to rise to the occasion means to succeed in dealing with a difficult situation.  I was not succeeding today.  I will be better.  I always am.  But these down in the dump days are really hard to deal with and even harder to try and explain to someone.  My husband always wants to know how I am and sometimes there is just no way to tell him. 

And there are those days I just don’t know myself………

 

Wednesday, August 22, 2012

Trading One For The Other


Multiple Sclerosis has so many ways it can come at you.  Your legs can ache or they can be numb or they can not work at all.  Your speech can be garbled or perfectly fine.  Your mind can be sharp or barely able to add 2 + 2.  You can have pain, burning, buzzing, numbness or all of the above at the same time.  It is a very unpredictable, cruel disease and loves to keep us guessing as to what it will throw at us on any given day.

For a change, I was fairly productive this morning.  I cut my husband’s hair, washed the dog, cleaned the birdcage and swept the floor.  As most of you can guess, it took a toll on me and I had to sit back in the recliner for a while to try and get some strength back.  My legs were trying to buckle on me and resting a while was the only wise choice.

After a while I got out of the recliner and tried to do a few more things.  My legs were still a little wobbly, so I decided this probably would not be a good idea.  As I turned to move out of the room, I hit the back of my left hand on the doorknob.  I hit it a pretty good lick and it hurt bad enough to make my stomach a little queasy and my legs even weaker than they already were.

It started me thinking, though.  I have been very conscious of my hand hurting for the past hour and completely forgot about my legs.  I am not totally convinced that it is a good trade-off!

On many of the MS sites that I belong to and stay in touch with, the people complain a lot of their family and friends not understanding their problems and not “getting it” about MS.  I, too, know this feeling and sympathize with them.  Some of them even go so far as to wish MS on others for a while so they could better understand their problems.  I do not go this far.  I would not want anyone to have to deal with the things we deal with on a daily basis even for one day.

Even though most of us have a lot of problems with our MS, I am not sure that I would want to trade with anyone else for their problems.  Although I have a lot of struggles and disappointments with this disease, I know that others have their own set of problems, too.  As much as I hate MS, I can usually deal with it and would not want to have to get used to something altogether different.  If anything, I wish we could all trade our problems in for a pain free life with no problems.  Since this is not possible, I think I will stick with my own.

I guess it is like comparing apples to oranges…………………everyone has their own favorite and would not trade it for the other……but, since they are both fruit, can’t we just learn to accept what we have and make the best of it??!!!


Tuesday, August 21, 2012

Brain Atlas



This will probably not come as a shock to most of you, but I think I know what is going on in my system with this MS thing.  It will not be a major breakthrough, and there will be no Nobel price involved in this discovery!

I started thinking about this the other day when I tried to pick up my pencil.  My brain was saying “pick up the pencil” but the hand was not listening.  I also noticed this when I tried to get up out of the chair and walk.  My brain was saying “right leg move” but the leg was not listening.

I guess I have been more or less trying to figure out a way to explain this to someone who does not have MS.  The map of the brain’s nervous system looks something like this:



With all the little twists and turns a signal has to go through to get to where it is supposed to go, I am not surprised that sometimes the signal gets lost.  I was thinking of it kind of like an atlas:



If you are going through Atlanta, Dallas, New York City or any number of large, congested areas and miss your turn, you may have to go miles and miles out of your way to get back to where you wanted to be.  Or, maybe you take a wrong turn.  The road back to where you wanted to turn may have to be gotten to in a very around and about way. I think sometimes our MS brain works like one of those scenarios.  My brain knows that I want to pick the pencil up, but the message may go to my left leg.  The leg does not know what to do with that request so nothing happens. 

Another way to describe the sensation is that the brain sends something out in English but it reaches the leg in Japanese, so it cannot interpret the request and so nothing happens.  Maybe it is kind of like the Tower of Babel where no one knew what the other person was saying.  Each part of our bodies may be listening in a different language so the brain cannot get across what it is trying to tell them.  Does this make sense??

I know that the doctors have explained it as little disconnected or damaged areas that the signals cannot get through.  That is a good explanation, but I sometimes feel like the signal is getting where it is supposed to go, just not in the WAY it is supposed to get there.
Personally, I like a small town where if you get lost, you don’t have far to go to get back to where you were headed. Just an old country road………




winding around the mountains…………




riding along the beach………



heading across the desert………




anyone interested in coming along??!




Monday, August 20, 2012

Fall Is In The Air


One of my cousins told me the other day that she could “smell” Fall in the air.  I am hoping she is right.  This has been a long, hot summer………not to mention the fact that we really didn’t have a winter either.

When we took our little day trip last week, a few little sprouts of color were beginning to show in the leaves.  Nothing much, but enough to give me hope for cooler weather.

I’m sure most of you have heard a lot of old wives’ tales.  One of the ones that really got me excited last year is the one that says if the squirrels are really busy and gathering nuts and such a lot, we will have a really bad winter. Wrong!!!  The squirrels got all of our pecans last year and scurried around like we were going to have multiple feet of snow and such.  We did not have a flake all season and it barely made it down to freezing a few times.

Unfortunately, I have not learned my lesson.  The pecans are coming out on the trees in clusters and I am getting excited about the winter getting near.  I hope I am not disappointed this year!

Another thing I really get excited about this time of year is decorating the house with the Fall colors.  I hope I can get up the energy to do so soon.  It is not as much fun to have to tell someone else what I want done and them do it instead of me.

One of the hardest things I have had to deal with in my MS struggles is learning that I can no longer do a lot of the things I enjoy.  I know I am not the only one with this problem and many are so much more limited than I am.  I guess we all have to deal with our own frustrations and hope that the good outweighs the bad in our everyday lives.

Last year, one of my sisters-in-law and I dressed up for Halloween.  It was really fun even though I was fairly limited in my movements.  The kids enjoyed seeing us and some parents even stopped and took our picture.  I am sure we enjoyed it every bit as much as the kids did.
(I am the blonde!!)
I hope I will be able to do some of the things I have done in the past.  I know that most of you are praying for these things also.  Adjusting to being “tied down” in our activities really puts a strain on most of us. 

With the holidays approaching, cooler weather (I pray!) and all the activities that the following months bring, I pray that each of us are able to put aside our limitations and enjoy the season to the fullest that we can…………there is so much to look forward to even if we have to have more help than we really would want………!!!

Friday, August 17, 2012

Riding Down The Road


We took a short road trip yesterday.  Sometimes it is nice just to get out of town, even if you aren’t really doing anything special.  We love the mountains and have often dreamed of moving there “when we get old”! (If we get too much older, we won’t be ABLE to move!)

Looking at different scenery is always nice.  My favorite time in the mountains is the Fall, but anytime is nice.  Just riding down the road is beautiful on the Blue Ridge Parkway…………..


This is Pilot Mountain………..remember Andy, Opie and Aunt Bee going to Mount Pilot?.......same general place………



These pictures are of Lover's Leap............although I can't imagine doing so!!!!



This is of Mrs. Onalena Puckett's cabin on the Parkway and a plaque in her honor.





(I know this is hard to read, so I wrote it out.  It is too precious not to!!)

“Born in 1837, “Aunt” Orelena Hawks Puckett lived here during the latter of her 102 years.  She was often heard to say, “The forest was green when I was a-born and I’m green yet.”  A bride at 16, Mrs. Puckett and her husband first farmed below nearby Groundhog Mountain.
Mrs. Puckett was past age 50 when she began a long career of midwifery.  She assisted at the births of more than 1000 babies, delivering the last in 1939, the year she died.  It has been said she never lost a child or a mother through her own fault.  Ironically, none of Mrs. Puckett’s own 24 children lived beyond infancy.
Regardless of weather, “Aunt” Orelena went wherever and whenever called.  Sometimes on horseback, often walking, the midwife brought assurance and kindness to all she visited.  When she began her practice around 1890, her fee was one dollar, and “when times was good”, six dollars.  Often receiving food or other goods in lieu of money, she generously shared all she had with neighbors or those in need.  Today, Orelena Puckett is remembered in this area for her witty, cheerful personality, as well as for her unselfish and skillful practice as a midwife.”
Is that precious or not??!!!!




Tuesday, August 14, 2012

I would Love To Feel My Lips!


According to the MS website, “numbness of the face, body or extremities (arms and legs) is one of the most common symptoms of MS. Often it’s the first symptom experienced by those eventually diagnosed with MS. The numbness may be mild or so severe that it interferes with the ability to use the affected body part. For example, a person with very numb feet may have difficulty walking. Numb hands may prevent writing, dressing, or holding objects safely. People with MS who have severe facial numbness should be very careful when eating or chewing, as they may unwittingly bite the inside of their mouth or tongue. People with numbness over other parts of the body should be careful around fires, hot water and other sources of heat, as they may suffer a burn without realizing it.”

I am going through a period where my lips and mouth are very numb.  This numbness affects me in two ways.  When I try to talk, my words are hard to form and I hesitate to speak for fear of not being able to say the words I am trying to say.  The second way it affects me is when I am trying to eat.  I am always conscious of chewing my jaw accidently or biting my tongue.  I also have a problem with feeling the food in my mouth and worry about not chewing it correctly and possibly choking.  Being able to swallow is a struggle for me at times.  I choke easily and have to really be careful when swallowing.

Many people with MS talk slowly.  As the disease progresses with some, speech is one of the things that is noticeable as a symptom.  Not only can they not form words, but the words are not readily available in their minds.  This, as I have already said, makes a person talk in a slow, mumbling type of speech.

As I have said before, the numbness in my right leg is present all the time.  I have gotten to the place that I really don’t think about it much anymore.  I am always cautious when going up and down stairs or walking where I have nothing to hold on to.  I drag the leg around and try to make sure that it is holding me up before taking a step.

With all the jokes about women talking so much, I guess many men would love for their wives to have a numb mouth and not talk so much.  My husband is not in that category.  We love to discuss things and really enjoy our conversations.  I try to keep up my side of the discussion, but when I can’t, he just slows down and lets me catch up at my own pace.  Sometimes, we just sit and enjoy the companionship of each other.

I think that I have gotten so used to writing my thoughts, rather than speaking them, because of these problems.  Not only the numbness in my mouth, but also the cognitive problems, have made me write my thoughts more because there are so many times that I cannot say them.  When writing I can take my time and wait for the words to come to me.  I try to go back and make sure that I am writing what I want to say, but often read them at a later time and realize that they may make sense only to me.  I hope that some of the things I write relate to others in the way that I am trying to say them.  If not, at least I tried and did not give up.  I guess that is all that we can hope to do with this disease!


Monday, August 13, 2012

Trends and Fads


I have my own style.  Not that I think I am better than the average person or anything, I just know what I like and don’t get into all the fads that come and go. 

When we are young, we want to be in and usually try to keep up with fads in clothing and music and such.  Most of the time, it really isn’t worth the fuss.  So many of the fads in clothing only look good on models and the average person who tries to wear them looks ridiculous.  Most of the time, I just bypass them and stay with what I have.

Things are always changing.  The moguls of the different industries are always coming up with something new to try and sell us more stuff.  I understand  the concept, I just don’t always choose to go along with it, especially as I am getting older.  Most of the clothing and music are geared to the younger crowd and do not interest me in the least.  Unfortunately, there are some of us older folks who can’t seem to get it into our heads that the “new” line of products do not look good on us and make us look downright silly.  I hope I never get into that group.

Music is always changing and I understand that also.  When I was young, my daddy though that music that was not in the Big Band area of music was not even close to being music.  I rebelled at that thought and we had a lot of discussions on what was considered good music. In the long run, we both won. He would listen to his music and I would listen to mine.  Since I went through this with my parents, I understand the need for each generation to have their own styles and their own music.  It is a part of growing up and moving away from the older generations.

MS has its own type of trends and fads.  One day we may have one set of problems, tomorrow we may have something all together different.  Most of us with MS have a certain set of symptoms that stick with us all the time.  Unfortunately, other things want to compete with this “normal” and try to work their way into our lives.  I, for one, think that the new and different things that come along to interfere with our lives are in the category of “I am not interested in trying you out”!

I wish there was a way we could vote out these new upsets in our lives.  Something like voting out a bad representative.  It is unfortunate that life is not like that.  If you don’t like something, you can go back to the store and trade it in.

I wonder if WalMart has a return policy that fits into that category?

Friday, August 10, 2012

Blah, Blah, Blah


I guess you could think of “blah” in two ways: (1) Blah, blah, blah is used to describe people who just talk on and on about nothing; (2) Blah is also used to describe a yucky feeling that we all have from time to time.

My husband and I have a lot of blah number 1 days.  My mother lives with us and rambles on and on about things that have no rhyme or reason to them.  If you happen to make the mistake of commenting on something she has said, she will argue with you for hours about what she said, as opposed to what she meant.  It gets very frustrating and can wear on your nerves BIG TIME!!  She is getting more and more into talking about trivial things that are of no interest to anyone.  She also is getting more critical of people and things.  This is not a problem that has developed as she has gotten older.  When I was young our pastor was talking to my Daddy one time and told him he was a fine man, but he wished he would talk more.  Daddy told the pastor that he was the youngest of ten children and then married Mother........he had never had a chance to learn to talk!

The last couple of days I have experienced blah number 2. Nothing is particularly wrong, I just don’t seem to have much interest in anything.  I have moped around the house and tried to get some projects started, but can’t seem to really get them going because they don’t spark my interest.  I hate these kinds of days!

Most of the time, like most of you, I have so little energy to put into anything.  I try to get the important things that NEED doing done and if there is any energy left over, I go on to something I WANT to get done.  It is very rewarding to actually get things accomplished and I really get excited when I am able to do so.

These past few days I have not even wanted to do the NEED things.  It is kind of like depression, but not that in-depth.   It is miserable to be like this and I am hoping and praying that it will not last long.

I have been taking a new medicine (one that is supposed to help with depression and such) and am wondering if this has anything to do with it.  Since it is supposed to work in an opposite manner, I would be surprised if it is the culprit.  I will give the medication another week or two and see what happens.  If I don’t get out of this funk, I will definitely call the doc and see what is up!

One of the things that really perks me up are all the friends I have met online.  Although most of us have some type of chronic illness that tests our patience and stamina each day, we all try to lift each other’s spirits and hold each other up no matter how down we may be ourselves.  I have been trying to read all I can online and get some “upbeat” feelings from some of you.  I hope it will work soon and I can get out of this blah mood.

Blah mood is much better than blah from my mother, though.  I wonder if she would notice if we walked around with earplugs???

Wednesday, August 8, 2012

Hanging Out With The Boys


I have gotten very limited in the things I can do.  Most of the day, unfortunately, is spent on the computer.  I “talk” with my MS and Facebook friends, play games and just browse around the web looking at things that interest me.  I enjoy these things but wish I could clean my house, cook the things I would like to and get out in the yard and be a normal person.

Like most with MS, I can either choose to be happy with the things I can do or be bitter thinking of the things I cannot do.  I choose to be happy (for the most part!).  I also enjoy reading, watching football (go Packers!) and movies and dabbling in crafts that I can still manage to do.  Many of the crafts that I once enjoyed require more control of finger movement and such that I no longer have the ability to do.  As such, I have moved on to doing simple things that I can do and still enjoy. 

I try to stay upbeat and be a happy person with my life.  There are times that I let my inability to do the things I once did get me down.  My mind wanders to when I was able to crochet, sew, cook, clean, run, jump, dance, take care of flowers in the yard and other things that most people take for granted being able to do.  At times I get really depressed.  Sometimes I wonder if I am accomplishing anything by going through each day.  As I lie in bed at night and go over the things I did that day, I can’t help but feel sometimes that I just went through the day and did nothing.

Most days I can feel happy with at least one thing I did that I can be proud of.  A friend of mine was one of the ones in Colorado who lost her home to the fires.  By offering her my thoughts and prayers, she said it is helping her through this horrible time in her life.  Maybe to most people that does not sound like much, but when a kind word and a prayer is what is needed, it can mean the world to someone. 

Even though a lot of us with MS have gotten to a point where we sometimes feel useless, we have to remember that we mean so much to each other when we share our thoughts and feelings and try to help each other through our love and encouragement.  There have been times when these things I have received from my friends online have been the lifeline that saw me through.  I hope that I have been able to give this to others.

There are also the sweet things that mean so much that we receive from our families.  My husband is my rock.  My family is my heart.  My grandsons are the joy that I cannot put into words.  Hanging out with them just makes all the pain and heartache melt away……..I’m sure you know what I mean!!!!

Tuesday, August 7, 2012

Not Enough Time In A Day!


When my youngest child was born, my next oldest was 2 ½ and my oldest was 4.  Between taking care of the baby, cooking, cleaning and washing clothes, there never seemed to be enough hours in a day.  I was always running behind on one chore or the other.

When my oldest started school, I kept thinking that maybe I would have a little more time.  Unfortunately, that was not the case.  Car pooling, homework and school activities were added to my ever growing list of things that had to be taken care of.  Twenty-four hours were just not enough to do the things I needed to do each day.

Once the kids were on their own and I was in the workforce again, the problem did not seem to go away.   I worked as a paralegal for a medium sized law firm and the hours were anywhere from eight hours a day to twelve and fourteen hours a day.  It left little time for taking care of my house chores and having any leisure time of my own.

I started looking forward to getting older, retiring and having those leisure hours to spend on things I wanted to do and having the time to do them.  This, too, went the way of a dream that did not come true.

With the onset of more MS symptoms, the days seem to fly by before I can get anything done.  I realize that most of the problem is not that there are THAT many things to do, but the fact that I am often not able to do ANY of them.  Some days, like most with MS, are spent just lying around and trying to gather some energy.  Some days are so filled with pain that I cannot get started on anything that has to do with moving around much.  The process of getting things done and having a schedule seem to be getting further and further away.

I really am not complaining.  My husband is an angel who takes care of me and most of the things that really need doing.  I cook a little when I can, do laundry when I can and clean a little when I can.  Otherwise, we manage with little actually getting done.  He does not complain, so I try to deal with having a house that is not as clean or organized as I would like it to be.  It is one of those things that we just have to learn to accept and not let it ruin the enjoyment of life.

My grandma used to tell me that time would fly as I got older.  I am not yet as old as she was when she told me that, but it is becoming more and more true.  It would seem to me that not being busy would slow the day down but the opposite seems to be the case.  Those things we used to laugh off as “old wives tales” often come true.  Live and learn I guess……….it’s a shame we have to get so old to do it though!!!