Tips you told us | |
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Tips for dealing with people in pain Ideas for friends & family 1. People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up. Pain people need the "rubber time" (flexible) found in South Pacific countries and many aboriginal cultures. 2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it. 3. Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid. 4. The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much. 5. Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation. 6. Don't always ask "how are you" unless you are genuinely prepared to listen - it just points attention inward. 7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall to high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt. 8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably. 9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g. no place to sit or lie down). 10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain. 11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited compared to the body's ability to feel varieties of discomfort. 12. We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognised disease. That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us. From Sharon Roe - UK
I saw this on another board and finally found the website it was posted at - I hope you find it as fitting as I did. Hugs and good vibes. |
And as far as his support of me with this disease, he says well at least you dont have cancer. People are walking around here everyday worse off than you. No arms, no legs, Just be glad you wake up everyday. You need to just suck it up and be a man!!!! I too am definitely on the verge of a divorce.
OH Moms - I wonder how many divorces RA has caused. Brett has been good considering who he thought he was marrying but he is so depressed right now - I think I have to be head of household. He is just not keeping it together. I have always been a survivor so you put me in the survival mode and I will survive. (Wasn't that a terrible song
Momofthree - my family is in general very supportive but this still reinforced to them just how I feel. As far as your hubby will he go to your rheumy with you so he can talk to him and learn more? Hugs and good vibes.
Wow, that's really true and quite powerful in its message. I'm goingtoomanyaches,
thank you
momofthree - Don't let the ignorance and inconsideration of others define your response to your situation. Tell your husband that you are going to the doctor because you have one of the most potentially disabling conditions in the the U.S. and that you don't want to be become such a cripple. He needs to back off and grow up. It is not in your head. You are not a hypochondriac. You are sick. And, yes, while people can understand how difficult cancer is, they don't get that this disease can be just as life threatening if untreated. Plus, most cancer patients go through short terms of toxic medicines while we must continue them the rest of our lives. Cancer is horrible, but so is this.
And anyone that uses the excuse that at least you aren't missing an arm or a leg is just being heartless and selfish. Sometimes, I wish my arm or leg would go away because then at least it wouldn't hurt so bad. Or, at least the problem would be done and I could adjust to it. But with RA, you feel good one time and bad the next. You have to adjust constantly. I feel like I have lost an arm. I can't really walk any more for very long. So, what is the difference between me and someone else who has lost a limb.
You must educate people or tell them to get out of your face. But you don't have to suffer with their unkindness. Pain is pain. You cannot measure another's against your own.
This kind of treatment really does make me angry especially when I know what it costs you inside. You deserve to be treated with respect and caring. Demand it and don't settle for less.
Roxy is right to take things into her own hands. Brett might not come around, but she is going to protect herself, her kids and her living situation. She is going to build a system of support around herself that will help whether or not her husband is in the picture. I think we all need to consider this attitude in our relationships.
My kids have been so wonderfully supportive, especially when I hear the stories here. But sometimes, they let me down. It's just too much for them to deal with. But slowly they learn. However, I have to take care of myself first and sometimes that is at their expense. But they do know that if I don't, I won't be here any more. That is something your husband needs to realize. His comments are cruel and selfish. He is acting like a spoiled child who is not getting what he wants in life. Well, you aren't either. And, if you are married, they are supposed to take the bad with the good. But living with RA is not all bad. With a little help and understanding, it can be dealt with and happiness can be found.