Friends, Fellowship and Faith!
Monday, April 28, 2014
Public blog
I just wanted everyone to know that I've removed all the posts by everyone but me and made this blog public in hopes that maybe it'll help someone else understand how people in pain feel.
No I can't!
I was going to start a new thread, but then
decided to just put it here.... I saw something (again) in arthritis
magazine when we were at the docs office that really set me off again.
It upsets me so much when I read or hear stories that say, "I have RA (or whatever chronic pain condition it is) but I did such and such and so can you, because you don't have to let the pain control your life." It makes me want to scream and slap the person who said/wrote it! No, that's not true....it actually makes me wish I could beat them to a pulp! Why? Because they make it sound like people like me:
The lady in the magazine with RA was running 5 miles a day "even though she was in pain". Good for her! I'm happy for her. But, she didn't have to say that anyone could do it if they wanted to because that's simply NOT TRUE!!!!
I've TRIED! Really tried! For over 3 years I tried specifically to increase my strength, endurance and abilities. Back then I could actually walk fairly quickly for a half hour a day on a flat surface. Now, after those three or more years of trying to increase everything, if I'm careful and hold onto a cart, I can walk for maybe 10 minutes when I'm at my very best. After that the pain keeps building until within another 5 minutes I can barely stand up. It's difficult for me to stand up long enough to cook Bruce's supper in the evening or do the dishes. If I tried to "run", I would literally be on the ground in excruciating pain within about 2 minutes, and no amount of trying would enable me to increase the time or distance I could go. Not to mention that my "run" wouldn't amount to much more then a weird looking walk at this point. (yeah, I tried it like an idiot)
They say they write those kind of stories to encourage us, but they're not thinking it through. They can't rely on an editor to spot the errors because 99 times out of 100, the editor won't know a thing about living with pain. All they know is grammar etc. If they're going to write a story like that though they need to make it very, very plain from the very start and again at the middle and again at the end, that there are many pain patients out there that simply cannot do any more then they already are. Not just for the personal sake of those like me that can't do more, but also for non pain patients that read stuff like that and then look at people like me and think that we're just lazy, faking it, enjoying the attention, etc.
Instead of helping people they're hurting a great number of us! And I'm sorry, but I'm really tired of it. It's hard enough to get our families, friends and acquaintances to understand our limitations, without having to then turn around and deal with something like that.
Not to mention our own personal emotional health. I suspect we all question ourselves. At least I always have. I've always questioned, "am I doing all I can do?", "Could I possibly do more?", "Is there something I could do differently that would help me?", "Do I really, really need these narcotics, or could I possibly get along without them?", "Am I just kidding myself?" "Maybe I really do want attention and am doing this because of it and just don't realize it...?"
You know what the result of all those questions have always been? That I always wind up doing way too much and being in a whole bunch more pain then I would have been if I hadn't.
I honestly believe that every single one of us does our very best to be all we can be, and do all we can even though we have to deal with this pain. It's like I told my kids recently in a letter I wrote them explaining to them what my limitations are, I don't let the pain rule my life, but I do have to deal with the pain and make concessions because of it, because it's a reality in my life, whether I like it or not.
Everyone is a little different. We have different thresholds of pain for instance. That doesn't mean that one of us is in less or more pain then another one. All that means is that it takes less to cause one of us to be at a level "9" then others, but we're both at a level "9", so both feeling the same kind of pain.
We may have pain in different places and/or for different reasons, and that can make a huge difference in what we can or cannot do physically. It's not really a matter of "how many things we have wrong with us" because over time, a pain patient generally gathers a list of diagnosis's a mile long, but rather how they affect us, and that can be different for us each. Just like the lady with RA who wrote the article that got me upset. Yes, we both have RA, but she either has very little knowledge of what RA is and how differently it affects people, or else, regardless of what she says, she has a very mild case of it.
It's not a matter of how much pain we can "stand" before we have to stop either. There comes a point when pain isn't the only issue anymore; Our bodies are not in pain for no reason, so when they get to a certain point, and the person refuses to stop regardless of how much pain they're in, their body begins to do whatever's needed to stop them. They may fall or pass out or whatever. After all this time, I know what my limits are. I'm way too stubborn to abide by them because if I did, I literally would be unable to do anything at all, so I continue to push myself. BUT, only to a point, because I've learned what happens when I go further then that.
I would never tell someone that lived with pain that they were letting their pain rule their lives or whatever, just because they couldn't pour their own cup of coffee, much less run 5 miles a day! Nor would I suggest that if they just tried harder that they'd be able to do more. Instead, I'd assume that they were doing their very best already. To me, saying those kind of things is every bit as bad as telling someone that they'd be healed if they just had more faith.
Sorry, I just had to get that off my mind. It really upset me.
- are wimps when it comes to pain (and I most certainly am not!) or
- are just plain lazy (again, I'm far from that!) or that maybe
- that we like all the attention we get by being in pain (what attention????), or
- they're not really trying or not trying hard enough, etc.
The lady in the magazine with RA was running 5 miles a day "even though she was in pain". Good for her! I'm happy for her. But, she didn't have to say that anyone could do it if they wanted to because that's simply NOT TRUE!!!!
I've TRIED! Really tried! For over 3 years I tried specifically to increase my strength, endurance and abilities. Back then I could actually walk fairly quickly for a half hour a day on a flat surface. Now, after those three or more years of trying to increase everything, if I'm careful and hold onto a cart, I can walk for maybe 10 minutes when I'm at my very best. After that the pain keeps building until within another 5 minutes I can barely stand up. It's difficult for me to stand up long enough to cook Bruce's supper in the evening or do the dishes. If I tried to "run", I would literally be on the ground in excruciating pain within about 2 minutes, and no amount of trying would enable me to increase the time or distance I could go. Not to mention that my "run" wouldn't amount to much more then a weird looking walk at this point. (yeah, I tried it like an idiot)
They say they write those kind of stories to encourage us, but they're not thinking it through. They can't rely on an editor to spot the errors because 99 times out of 100, the editor won't know a thing about living with pain. All they know is grammar etc. If they're going to write a story like that though they need to make it very, very plain from the very start and again at the middle and again at the end, that there are many pain patients out there that simply cannot do any more then they already are. Not just for the personal sake of those like me that can't do more, but also for non pain patients that read stuff like that and then look at people like me and think that we're just lazy, faking it, enjoying the attention, etc.
Instead of helping people they're hurting a great number of us! And I'm sorry, but I'm really tired of it. It's hard enough to get our families, friends and acquaintances to understand our limitations, without having to then turn around and deal with something like that.
Not to mention our own personal emotional health. I suspect we all question ourselves. At least I always have. I've always questioned, "am I doing all I can do?", "Could I possibly do more?", "Is there something I could do differently that would help me?", "Do I really, really need these narcotics, or could I possibly get along without them?", "Am I just kidding myself?" "Maybe I really do want attention and am doing this because of it and just don't realize it...?"
You know what the result of all those questions have always been? That I always wind up doing way too much and being in a whole bunch more pain then I would have been if I hadn't.
I honestly believe that every single one of us does our very best to be all we can be, and do all we can even though we have to deal with this pain. It's like I told my kids recently in a letter I wrote them explaining to them what my limitations are, I don't let the pain rule my life, but I do have to deal with the pain and make concessions because of it, because it's a reality in my life, whether I like it or not.
Everyone is a little different. We have different thresholds of pain for instance. That doesn't mean that one of us is in less or more pain then another one. All that means is that it takes less to cause one of us to be at a level "9" then others, but we're both at a level "9", so both feeling the same kind of pain.
We may have pain in different places and/or for different reasons, and that can make a huge difference in what we can or cannot do physically. It's not really a matter of "how many things we have wrong with us" because over time, a pain patient generally gathers a list of diagnosis's a mile long, but rather how they affect us, and that can be different for us each. Just like the lady with RA who wrote the article that got me upset. Yes, we both have RA, but she either has very little knowledge of what RA is and how differently it affects people, or else, regardless of what she says, she has a very mild case of it.
It's not a matter of how much pain we can "stand" before we have to stop either. There comes a point when pain isn't the only issue anymore; Our bodies are not in pain for no reason, so when they get to a certain point, and the person refuses to stop regardless of how much pain they're in, their body begins to do whatever's needed to stop them. They may fall or pass out or whatever. After all this time, I know what my limits are. I'm way too stubborn to abide by them because if I did, I literally would be unable to do anything at all, so I continue to push myself. BUT, only to a point, because I've learned what happens when I go further then that.
I would never tell someone that lived with pain that they were letting their pain rule their lives or whatever, just because they couldn't pour their own cup of coffee, much less run 5 miles a day! Nor would I suggest that if they just tried harder that they'd be able to do more. Instead, I'd assume that they were doing their very best already. To me, saying those kind of things is every bit as bad as telling someone that they'd be healed if they just had more faith.
Sorry, I just had to get that off my mind. It really upset me.
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