The PAIN!

Sandy is How are you doing? Living With It PhD Clin Psych, retired Licensed Psychol, Certif Master Gardener POLIO (Bulbar and Spinal Bulbar forms) at age 4 and now POST-POLIO... Send Message Subscribe: Sandy

Tuesday, September 09, 2008
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Hurting...all the time now! the PAIN... is unrelenting,constantly totally dominating. It wakes me all night. It wears me out all day. I am going....nowhere I am on a totally endless row of nothing.. followed by more nothing, Finding myself.....withdrawing Conversation- I don't want to talk.....

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Don't You Give Up On Me
Jo
Monday, October 27, 2008 at 02:29 PM

I know that you are in that place where no one can reach you.How do I know.Because I am taking the time that I should be getting ready to go to the doctors.AGAIN.I am so sick and tired of going and having people tell me don't give up.But most of them have not walked in your shoes.I haven't walked in them No one can say to you I understand.But I can say that since we have become friends on the way out of life.That God has given me a friend who no matter what I say will not judge me.Not ever.And that is someone who is hard to come by.So don't you give up on me girl.I know the days are bleak dark shadows.I know that getting in my car in an hour to drive to the darn doctor again just to get my medications so that I can continue to live this meaningless life.So that I can endure the pain be it in sleep.Or talking to you.I know there have been months where I have not wanted one person to know on my door.But at the same time I did.I am reminded of that song did you ever have the feeling that you wanted to stay but still had the feeling that you wanted to go.I feel like that every day.I guess my ACE in the whole is my wonderful husband.I have seen it happen to so many of my friends.Their husbands leave.So of what good are you according to yourself.We have identified ourselves as wives,mothers.lovers.grandparents.friends,.Are we never just appreciated for who and what we are?What we want out of life has turned out to be a joke.So we might as well chunk it.I think that way so many times.But it was you and a few others on this site who have given me the courage to continue.I hope someday we will be cured.Maybe it is just one year away.If all the hope you have seems gone then let me remind you what a wonderful friend you have been to me.And I do not know what I would do if You left the air permanently.Take the time you need.I know youu have a lot on your back right now.But Sandra you are somebody to me.If God said to me.What has Sandra done to go to heaven.I would say she saved my life.When I was in dispair she pulled me from that bottomless pit and said we can do it together.So I want you to know that.I wish this could be longer.But I move like a turtle as it is and I need to get to the doctors office.Just know that I am here and I would miss you.....Jo

re: Don't You Give Up On Me
Sandy
Friday, September 25, 2009 at 10:37 PM

Dear Jo,

It has been nearly a year now since you wrote those words to me. I hope you are still there. I hope you are still going to all those Doctor appointments because that means you are still trying to do more than just survive.

I think that tonight was the first time I read that letter "Don't give up on me". There are many things I don't remember from that time. I am still in pain although some days are good, others not so good. But I am still here and finding new ways to manage the pain all the time. I know I must stay busy- not running around sort of busy just busy setting some goals and working toward them. I have found that having projects, things I want to accomplish- sometimes as simple as getting that closet cleaned out. Other times- more complicated projects like in spring time- planting some lettuce and carrots in that piece of ground that gets all the sun. Or painting that wall a contrasting color. Whatever they may be, I must have projects going all the time. Something I can look forward to as I get up each morning. Some goal I can set that I can focus on instead of the pain making me focus on it all day.

Yes, there are still days when even all that does not keep the lid on the pain. Today was one of those days-when I woke up, it hurt to even turn over in bed. Holding on to the siderail on my bed, I was able to slowly slide off the bed to sit on the step stool beside my bed. From there I could take a deep breath and gradually work myself into a standing position. But ohhhh the pain! It seemed like it was in every cell in my body! But I already had some things I planned to get done today and I needed to start moving if I was ever to get these things done. And I know that the Morphine and Hydrocodone, that I now take several times each day, will take enough of the edge off the pain, once I take it, that I will have a chance to find some project to focus on and keep on going!

But tonight as my bedtime approaches, I have to admit that I look forward to the handful of pills I take each nite. After I take all the pills, I can feel them gradually push the pain more into the background until I am able to, consciously, start relaxing my muscles enough to allow sleep to take over. I am then able, with any luck, to get a good 4-5 hours of sleep before the pain aweakens me again. But hey! 4-5 solid hours of sleep is a lot more than I used to get and it really is something I look forward to that can give me the strength to keep going.

But how are you doing Jo? What has happened in your life in this past year? Please be there! Please let me know you are still there! I need to know you are there! Until then, take care,

Sandy

Surviving Chronic Pain
Sandy
Friday, September 25, 2009 at 08:04 PM

Chronic paimn is very difficult to live with. No question about that. In response to one comment above: I too take Oxycontin 3 X day along with Hydrocodone 4 X a day. I have found this combination more effectuive than anything else I have taken in the past. However, I do find myself getting very sleepy on these medications too. I seem to fall asleep anytime I am in one place for more than a few minuters. I fall asleep typing on the computer. My children (both adults and living away from home!) know that I have fallen asleep while emailing them since they will get a page or 2 of whatever key I landed on when I fell asleep! I have given up my car keys because I have fallen asleep while driving. So I drive no more. This is a very common side effect of the narcotics. But it is a side effect I choose to live with given the alternative.

Re: the question about pain increasing when the weather is bad:I can tell when the weather is going to change, i.e.when a storm is coming in more reliably, usually, than the weatherman can predict. This was once explained to me this way: that the barometric (air) pressure drops when a storm is coming. And that the pain we feel at that time comes from the air pressure inside our joints not being able to drop as quickly as the air outside when this low front comes in. This greater pressure inside our joints presses on the nerves in the joints, causing the pain that we feel. This makes sense to me. If anyone has a better explanation than this I would be happy to hear it!

Sandy