...changes like Kansas weather.

Now, here's a chicken or egg question for you.  Which came first?  Am I moody because of the changes my life has taken due to my health?  Or does MS come with mood alterations too?  I don't know and I don't even know if *they* know.  But I can tell you I have them.  And it is in an instant with no apparent cause.

I mean I can be sitting here and be mad and have no clue why.  But at the same time, I can't seem to change it either.  I hate it, just hate it.  Really!  It's bad enough you can't trust your body or senses but your temperament?!?  Sheesh... lol... It's crazy.  I can be crying and not even know why.  And worse yet, not even WANT to. I think the key here is lack of control.  Let me try to tell you about this loss of control by telling you something that recently happened.

To begin with, we were going to Bradenton to visit my cousin Sandra and her husband.  Sandra had lived with us when I was a teenager in 1968 and stayed with us until she moved out some 3 or 4 years later.  They [Sandra and her husband] have lived in Florida for 2 years and we were going to visit for the first time.  I had never met John and knew very little about them other than the fact that they were strong Christians and he had been a physical therapist.  We had been meaning/wanting to get there for 3 or 4 weeks now and due to Mike's new business were only available to go on Sundays and the previous two Sundays, he had been sick.  And the week previous to that was no good for me.

So, each week we planned the trip and each week brought disappointment when it failed to come through.  So, it was with this determination that I was not going to disappoint her again.  I had told Mike I wanted up at 10AM this morning so that I could have time enough to get ready so we could be on the road by noon so we would be there around 2PM.

At 12:45PM, I woke up and I was immediately upset.  I went in and in not so many words commenced asking him what the hell was going on and why was I still in bed.... like it was his fault.... he said he had come in at 10AM and told me it was 10.  I told him it was quite obvious I had not got up and couldn't he have come back?

Well, anyway... we were on the road shortly thereafter and had a not too pleasant trip.  We were in the midst of a tropical storm, the rain and the wind made the drive worse and I am not a good passenger any more [actually I was never a good passenger and always preferred to be a driver].  The stimuli of the traffic and the cars going by and the windshield wipers and the tire noise is all too disconcerting any more and then to add my mood just got me more and more upset.  I wish I could be actually talking to you so you could understand this, as it is impossible to tell you and get it all across.

So, here I am upset and crying and wept many a tear trying to explain how it was when you have no control.  And you know what?  You can't.  You cannot possibly tell someone what it is like to have to live like that without coming across as petty and little and then that just leaves you a mess.  I will give two examples in hopes of giving a glimpse of what I mean.

Let's say, it's 11 o'clock at night and you have a craving for a Hershey bar or ice cream sundae or Taco Bell taco.... whatever it is that is not in the house... you are in your pajamas... or you have your shoes off... or your completely dressed... whatever... but whatever the desire is, has to be more than the fuss you have to go through in order to satiate it and if it is, you simply get up and go get the candy, or ice cream or taco.  But in a case such as myself, not only does the desire have to be such that it spurs me to action but must be such to catalyst DH to action as well.  Although, I have always been the type that getting up and out at midnight was never a problem, DH is one who is normally quite nestled by 9PM, so rarely have I ever created that need in him.  In fact, only twice.  Of course, as faults go in husbands, this is quite minor and frivolous but in response to meeting wants/needs/desires, this is still unsatisfactory but stupid, I know.

Now, I did not tell you this so I would appear petty and ridiculous and nasty.  I tell you this in hopes that you might understand at least in part of the totality of all that is missing. 

Now, the second thing I bring up will sound even more ridiculous but yet so much a part of my life.  When you are a passenger in a car, you have no choice but to go the route of the driver at the driver's speed, taking turns when, where and how the driver wills with the turn signal and wind shield wipers at their discretion but as annoying as this may be, you normally overlook it as you know, in a few minutes, or hours or days, it will be your turn to be in control.  Well, guess what?  Not for me.

If you read JO's Journey through Darkness, you may recall a little of what I told you when I was with Steve.  It was horrible.  Not one time in the six months I was with him was any action for my own purpose.  Not even the time it took to smoke one cigarette.  I was constantly directed by him to do something for or about him.  It was horrible.

I have an IQ of almost 150 and excellent math skills, always have.  At one time, Steve wanted to figure out what the profit would be on the sale of some stuff he had.  Now the method to the correct answer was not as important as the right answer.  Right?   Wrong!  He told me or wanted to tell me each and every step.

He told me to get a piece of paper [what else was I going to write on?] and to write... and then he began to tell me step by step what he wanted me to write [if you will recall he was a quad in a wheelchair].  Well, I was way ahead of him, had calculated the answer and told him what he wanted to know.  Was he happy?  No!  He began to yell and scream about how all he wanted was for me to be his hands and to do it the way he wanted it done.  I never understood that and here I was trying to explain it to my husband that just once in a while I wanted things the way I wanted things.

Well, this was an absolute slap in the face.  I was slammed back in the past to the days of Steve and recalled with perfect detail the horrid of life and trying to please him compounded by someone like myself with energy problems trying to care for an invalid who ran for 4 or 5 days straight.  So, I had been the caregiver and life was not good nor was I happy.  And now I was like Steve and life was not good and I was not happy.

I have wondered within myself if I suffered from depression or denial or anger or what and how much of me was wrapped up in what and whether I should be in some sort of counseling or support.  Awww, sh**, this is shot night.  Be right back.

Anyway, back to the subject of whether I am normal or not.  Let's look at it this way.  In the span of less than 2 years, I no longer looked like me, was no longer able to work like me, could no longer perform as I did, could no longer walk, drive, cook, have sex, you name it.  Is it even sane to think I would or could be without mental problems?  I mean, how could I, for gawd sakes?

So, here I am telling Mike you don't understand.  It's not whether the wipers are on or off that's the issue.  It's that I have no control whether they are on or off.  And at the same time that isn't it because it can't be something so petty and mundane or I must be a real bitch.  And he, in his very polite and quiet way, tells me no, he doesn't understand it but can from the other side as he is affected by what I can and can't do.  Whether I felt up to leaving the house, or taking the boat out or going dancing or any one of a hundred things and I was slapped back into the subservient one who can only do as the other can.  Oh, man if that wasn't a sharp slap across the face that I did not like.

I mean I did not like the role of caregiver [at home... my MIL lived with us], when I was a nurse and I loved my job, and my gawd what must I be putting my husband through.  It was just not fair and exactly where did that leave me?  Suicide?  Nope.  Divorce?  Not what I want but possibly fairer choice.  Maybe, just give sanity a bit of a slip and go completely over the brink?  I mean, just how much is one person suppose to bear?

I am a good person at heart with a propensity to give more of myself than I have but that in itself is not a crime.  Am I even aware if this is a thought or notion and if so to what degree?  Am I angry?  If so, at who?  God?  How can I a mere mortal, and not a good example of one at that, dare be mad at God?  It's not like that makes the world a bit less of a place to be or anything.  But I know something is not right and have known it for some time.  But to who and when do you reveal such things?  I was so fearful of losing control and yet exactly what control do I have?

So, we arrived at Sandra's around 4ish with the thought in my head that we would leave no later than 7PM so we would be home no later than 9PM for the long awaited season premiere of The Sopranos.  So while we were there, in fact shortly after we arrived, I was in tears and volunteering to them that my life was not a piece of cake and that is not me.  I do not do that.  And please don't get me wrong.  It is not that I am so good, that I do not complain.  It is because I am too scared to.  Too scared that if I ever started I would not stop... that I would go completely over the edge that I precariously clung to... that I would become bitter... or worse yet realize that I was in fact already over the edge and bitter and did not want to face it.

At some point I even chuckled and asked if they had in fact prayed a head of time for this breaking down of spirit?  lol... John called it being imprisoned by my body and as a physical therapist was able to give me some pointers toward a better physical existence and then he proceeded to nurture my/our spiritual side which for all intent and purpose is or was far more disabled that my body.  He said all the things that I refused to say out loud.  All the what if and the things we can't understand but he knew that whatever it was that was happening to me wasn't because I deserved it nor was it even fair but it was through this that something was to happen and that he was sure of.

In many ways, he said he never met anyone who had so many catastrophic health problems who could do so well.  In fact, how was I even here?  That in itself was a testament and I was indeed here for something even though I did not think so.

Now, I would guess that even for the *normal* person, there was a gamut of emotions that day.  But the lack of control just adds to it.  Do you really think I was so angry over the windshield wipers?  Not likely.  More likely I am angry that I cannot do all those stupid, silly things that everyone takes for granted.  That's why they're called *silly things that everyone takes for granted* because in the big picture of things, they do not matter.  They are unimportant but, boy...  lots and lots of unimportant things piled higher and higher...  Hmmm???  What does that do to you?  Just try to sit in that chair you are in all day.

We, in America, call it being waited on hand and foot.  But, it is only a luxury when you can do it yourself.  If someone refills your coffee cup because they are up and getting some for themselves, we are appreciative and thankful that they thought of us.  But when you actually wanted it an hour ago but didn't want to be a bother and couldn't do it yourself.  Well, now that puts a different slant on things.  I am not like that.  I have simplified things to make a point.  I can get up and get my own coffee.  But I can't go out and get the coffee any more.  I am stuck. That doesn't mean I want out.  It's just a fact of my life.