I have started having difficulty extending my right leg. I know it has to do with the MS. When I am sitting anywhere, the leg tries to voluntarily pull to the left, with the right foot sliding behind the left leg. When I stand to transfer, the heel on the right does not want to balance on the floor nor does the knee want to bend. This can make transfering difficult. I hope to resume some stretching exercises to see if that would help. I'm thankful there isn't any pain nor discomfort. In that area I am fortunate.
I finished the LIGHTING bok by Danielle Steele and I have to say, she knows how to put the emotions out of her readers. As I said before. this book details the life of a woman who has been diagnosed with breast cancer. During the course of her treatments, her husband leaves her because he cannot handle her being less than perfect. The reality is diseases like cancer and MS take a toll on any relationship. There have been times when a strain comes into view with my marriage, but for the most part, the problem is with the way I am handling the situation. My husband has been and continues to be supportive and when I'm having a hard time, he says "Is it you or the MS talking?" At first it use to aggravate me when he said this, but now I find myself saying it. Another thing he will say to me is "So what are you going to do about it?" We've had some laughs over my responses - humor is really the best medicine. When I am sad or down, I fell sad or down. I hope that makes sense. And no one wants to be around me at that time. Do you want to be around someone like that?
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No, I totally know what you mean.
ReplyDeleteAnybody living with a chronic illness, disease, or chronic pain, knows exactly how you feel.
When we have good days, it's really good, but when we have bad days, or feel sad or just down, it's really sad and down, in the dumps, like really bad depression.
Other people who do not live with what we do, do not understand it, they just do not know what we live with, how it makes us feel.
And yes, it does have an effect on those we love, those around us, but again, they will never personally know what it is like at all.
No one wants to be around me when I'm like that either, but the question, "what are you going to do about it?", kind of irritates me.
I mean, what would you like me to do about it is usually my response.
I often ask people when they ask me that, the following, how would you handle it, how would you feel, how do you think you would feel?
Can they ever even possibly grasp the slightest concept of what it is to try and live the way we do?!
I live in constant pain, 24/7.
I have 28 inches of titanium rods running the full lentgh of my spine, they hurt, they get freezing cold when it gets even the slightest bit chilly or rainy outside.
I have to have another surgery, one that has a 10% chance of paralyzing me from the neck down forever.
Or, it could end up making me unable to breathe on my own for 3-4 months. I may end up having to have a trach tube put in as well as a feeding tube until my neck is strong enough to allow me to breathe on my own again.
I have to make a choice to go through another surgery to try and improve the quality of my life, but it may end destroying my life and that of my teenage sons if I end up paralyzed.
How, just how, would they feel about that?
What would they do about that?
Your position is both scary and heart touching. And you are right in that other don't always understand. A dear friend of mine has the worst form of MS and she is on both a feed and trach tube. She was totally scared, but chose these tubes in order to improve her quality of live. At the time she had ateen ay home who was angry with the disease. In your case, these tubes would be short term, but you have alot to consider - like what care is involved, how will others react, what are the chances of infection, how will this both improve/impact your life, what happens when the tubes come out - more surgery or scaring. Your position is not an easy one. good luck! Just weigh the pros/cons.
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