Posted 12/22/2008 6:08 PM (GMT 0)
Your so right Marlee. This is all relative to how people view their circumstances. That is why somewhere I said the mind has two fundamental ways of viewing our circumstances. There are degree's of it, but it still comes down to those two ways are we are viewing ourselves as alright, or not alright. If we view ourselves as alright, we can have a huge amount of problems and our minds move positively. If we view ourselves as not alright, a simple headache, or even nothing at all will make us feel miserable and dwell on not being alright.
I am taking care of a 83 year old mother that has been extreme OCD her whole life and now has dementia and seems to be slipping into Alzheimers. She dwells almost constantly in the negative because she can no longer do most of the OCD things that distracted her.
My father lays in a Hospital bed all day except when he slides into his wheelchair and back. He fractured a hip when he was already barely able to walk, from bad knees, and his heart is so bad he cannot survive any operations that would require be put under, so now he probably won't walk again, and he already had a cumulative rating of 260 percent worth of disabilities before that happened. He is 10 times worse then I am, looking at the last years of his life as basicaly bedridden and has a whole lot better attitude then me. I know that if he could still walk at all, just enough to get from the wheelchair into the Van and back to the wheelchair, he would be grabbing his oxygen tank, his suctioning equipment for his trac, his heart pills and heading out everyday, fighting for air and eating nitro pills, and he is somehow spending most of his time in a frame of mind that its alright, and he is getting all the good out of life he can still get. Now that he is almost bedridden, he is still doing it. He fought his way into the wheelchair the other day and cleaned the kitchen and bathroom.
My sister has had Fibro allot longer then me. She is more progressed then me. She has bad neuropathies and her legs are shot to the point if she has to walk more then 50 yards the wheelchair has to come out. And she fights to dwell on the positives. She is in a constant cycle of push to get whatever done and get the positives out of her life, like baby sitting her grand daughter, and then crashing.
Me, I go back and forth from my little job I just handle to home and my TV, because I always feel either mentaly not there, or dizzy, or fatigue, or depressed, or lightheaded, or in allot of pain, or loaded up on stuff that kills the pain, killing my ability to think and focus, and I have a horrible attitude, because I know I am dwelling in all the negatives. My Doctor friend told me one time when I was complaining about my inability to focus anymore that I was wrong. He said he could tell that I had a strong ability to focus, but I was useing it to focus on everything that was wrong, instead of shifting it to the things that were good for me.
So before this turns into another huge meandering post, I will cut it off by saying the start of this thread by you on how much of this is in our minds is the main issue, not because its going to heal us, or is causing the problem directly, but its the thing we probably have the most control over. This is a physical problem, but it is just as much a mind problem, because it is a feedback loop, and your 100 percent right on in that it is individual on how each person views it and deals with it. Improving the mental sense of well being and focusing as much as possible on the good in our lives and doing what were capable of doing is not going to make this go away, but it will make the amount of time we spend feeling alright with where we are at more, and we will spend less time feeling we are not alright. Its the basic difference between pain and how much mental suffering.
This forum is filled with people in pain at different levels, and mental suffering at different levels. And although there is no way to prove it, I would bet there is a huge difference in perception that is not a direct relationship between the two. That doesn't mean we shouldn't be empathetic towards each other no matter what the degree of pain or mental suffering is. If anything, it has to be the other way around where we do understand its individual. Its one of the major reasons for a forum like this anyhow, right? Beyond trying to help each other with what we learned, its to give a sense of empathy and understanding that nobody that hasn't been there offer. Not sympathy, empathy.
Sorry for the edit and length, but I had to for realpain. I absolutely do not think this is just in our heads. As a matter of fact, fix the body and nervous system somehow, so we could pursue our lives and the mental issues would probably disappear. I got ping ponged for two years between a Doctor telling me if I had a good Psychiatrist I would get well, and a Psychiatrist telling me if I had a good Doctor I would get well. I enjoyed telling them both what the other one was saying, and neither one of them knew what they were talking about.
But, Fibro is still a psychosomatic problem, which is a whole lot different then a hypochondriac problem. Psychosomatic means there is a conscious connection between your mind, your sympathetic nervous system and a very real physical problem that is feeding in a big loop. It became a psychosomatic problem when the symptoms crossed over the line and made you consciously aware that it was stopping you from doing what you wanted to normaly do without suffering and messing up your ability to live your life. At that point it caused a conscious stress feedback to the physical problem. You cannot fix the physical side of a psychosomatic problem by simply fixing the mind, I don't care if you eat rice and vegetables and sit on a rock and meditate or excercise and then relax 24 hours a day. Did it, done it, been there. But you can improve it, if your life allows you. The more control you gain in any of the aspects of this the better off you are.
I know what you mean though about relatives and friends attempting to show understanding and how little they actualy understand. Unless your actualy passing out in front of them and your still standing, the room could be spinning around your head, your hurting everywhere, you just want to lay down and pass out, but because you are still standing and still forcing yourself to do whatever they need, there just can't be that much wrong with you.
Whats really strange is my sister has Fibro and she got treated the exact same way by her husband and everyone else but me for years, until it reduced her to not being able to stand much of the time, and then finally people started clueing in. I just got to the point I don't even bother saying anything, because its like you said. "Well, if you would just eat better, or go back work as a Plumber, or start your own repair business, or start doing your Internet business again, or start swimming a mile a day agaig, or hiking, or whatever you will be fine. Just pull those boot straps up and make everything work for yourself and all will be fine.
We basicaly know our own limits, and what we need that would help us and what takes us down, and if they would hear us, and wanted to help on that basis, it would help, but it just can't be accepted at what is coming out of our mouths, so it just adds more frustration, stress and pain. I know that in most cases they are just trying to be helpful, and in some cases its just out right judgementalism. And I know this is not all the cases with everyone. Some people have others in their lives that are truly supporting, but its preaty rare. But the thing that kills me in most cases, is it just has to be something other then what I am simply saying as being the truth, so I preaty much gave up saying.
Sorry, it turned into a long meandering post after all.