Thursday, September 20, 2012

Two Different Sides

One of my MS buddies was talking yesterday about her changing moods.  She was blaming some of it on the weather and some of it on the MS.  I agree that it was probably both.

I really notice that I have zero patience a lot of the time.  I can control it to a point and not lash out, but it is all I can do sometimes to manage that.  I am calm on the outside, but raging on the inside.  Unfortunately, there is usually no reason for it and I am left trying to decide why I have so much rage.

Pain is one reason, I think.  Most of us with MS have a certain degree of pain every day.  Some fortunate few do not, but most of us do.  The harder the pain is to deal with the less control we have to deal with other activities around us. 

Worry is a big one.  Whether we admit it or not, all of us worry about where this disease will end up taking us.  For many there will be moderate limitations to daily life, but they will be able to function in a normal world and get by.  For many of us, that is only a memory.  The yearning for that lost life only seems to make the present one more unable to be tolerated.  Not only that, the fear that it will progressively get worse and worse makes us sometimes not enjoy what “normal” we have.

Misunderstanding by others is a major one also.  Most people have no clue what we go through each day.  Not being able to keep up with what we once did is not a choice, it is something that was forced upon us.  Being ridiculed and criticized causes a lot of strain on many of us especially when it is done by our family and people who are supposed to be our friends.

Worthlessness is a major one with me.  I feel so worthless now.  There are a few things I can do, but, for the most part, I sit here at the computer and try to keep my mind busy and not get too stale.  My body is useless for doing very much housework, cooking and other things that once were a major part of my life.  My mind gets so into thinking about cooking and cleaning and such, but my body just will not cooperate.

The list could go on and on, but I will stop here.  No, I think I will add one more……..people who have loads of advice but don’t have a clue what they are talking about.  So many people say that if you would exercise, eat this or that, take these vitamins, etc, you would get well.  Maybe that works for some.  For some of us these things either don’t work, or are things we cannot do.  I have been told so many times that if I would just get up and exercise and move around I would get better.  The more I move around the weaker I get and the weaker I get the more likely I am to fall.  Most of the foods on diets that are supposed to change your life are so expensive that I can’t afford them.  It is a dead-end road.

I used to hear people talk about driving beside someone who looked very pleasant and happy.  But, when another driver did some little something that really didn't amount to much, the person would go into a severe bout of road rage. At one time I would not have been able to understand this.  Now I can.  It only takes that one extra little something to really mess up a person’s day!!!


Sherri said...

You have done a great job here hitting the points on living with disability. I long for those in my world to have some understanding, but if that understanding only comes through walking in my shoes, well I don't want that. I wouldn't wish this on anyone, ever.

While I deal with everything you've listed here, the one that I'm struggling with the most right now is that worthless feeling. My independence has been stripped from me, I no longer work which leaves me sitting home trying to figure why in the world my husband is not resentful of my sluggish ways. I feel very blessed that he's a traditional man with no problem with his wife being at home.

Janie said...

My husband is the same, Sherri. He is always looking for ways to make life easier for me, when I feel like he is doing everything in the first place! He is so patience and loving. I read about so many of us whose mates/spouses have left them because they just could not deal with it. We are so very blessed!! Thanks for the comments!

Muffie said...

Add me to that list. That's why when my own 'rages' start I don't want to externalize them. If I do, I hit the one person who really doesn't deserve it.