Friday, November 04, 2005
There are a few sips of whine left....
Sorry. I was gonna throw it all into one post, but I just ran out of energy last night. Promise, though, after I've finished this litany of complaints, I'll be in a much better frame of mind for appreciating all that is right with the world and with my lfie.
Here is a big one with me: that it is difficult to adequately impress upon certain people how life-changing chronic illness can be. You know, the ones who say they know exactly what chronic fatigue syndrome feels like because they've been tired before, or who say they know all about rheumatoid arthritis because they have a trick knee? I can appreciate the ones who are genuinely trying to understand, but all too often, the people who don't get it are the ones who equate illness with moral shortcomings or laziness. Like last night, I won't name any names, but more than one person in my life has either implied or flat out told me to my face that I am sick because I "made" myself that way, or that I'm sick because it's convenient for me to sit on my fat butt and not work. Oh, hell, yeah, it's very convenient for me to take a $30,000 per year pay cut and give Dan premature grey hairs (for those of you unsure, this is me being facetious).
I'm not trying to be cruel to those with minor ailments, but I'd like to try to explain the difference between someone who has quality of life and someone who does not. Someone who has the flu, for example, really feels like hell for that week or two they are sick, to be sure, but this is not a serious compromise of quality of life because most of the time, the person with the flu has a foreseeable end to the crisis at hand and can put their regular activities on hold briefly. In other words, they can usually bounce back good as new. But someone with fibromyalgia feels like they have a severe case of the flu EVERY DAY, and there is no end in sight. So they can't put major life activities on hold indefinitely.... eventully, they must try to get out of bed and figure out how to function despite the body aches, fatigue and brain fog. Part of this learning how to function while ill usually requires scaling back any activity not absolutely essential....in other words, giving up the fun stuff so you still have the energy to take care of yourself. When you must relinquish your favorite activities due to illness, that is adversely affecting your quality of life.
Another example might be that person with minor osteoarthritis in their knee. Yeah, that pain is pretty bothersome, and might keep them from being able to run sometimes. But unless running is a routine activity for them, they probably don't think about their knee more than occasionally and can pop a couple of Aleve for relief. And they will probably still be able to walk on it. So, yes, it does interfere in their life, but not in a major way. Someone with an autoimmune disease causing arthritis, though, may have the same amount of pain in their knee as the osteoarthritis guy, but they ALSO have it in the other knee, and maybe their entire spine, hands, wrists, hips, feet, ankles, shoulders, etc. And it may hurt all the time, not just when they run. If they have rheumatoid arthritis, their joints may become deformed to the point where they won't work properly at all. Have you ever considered spending every single day with hands that you can't straighten, hands that won't button a button, hands that can't hold a pen or type at a keyboard? Or spending every single day unable to walk? When your body becomes impaired to the point that you require the assistance of others to take care of yourself, that is adversely affecting your quality of life.
Yeah, my analogies may be a bit simplistic, but you'd be amazed how many people believe that someone with severe rheumatoid arthritis can still do whatever they like if they really want to. Or the millions of people who believe that someone with CFIDS only needs the right mindset to "get over" their illness. There exists an attitude amongst the healthy that those who become depressed as a result of chronic illness are just sitting around feeling sorry for themselves. Well, it's a little more complicated than that. Part of it is just the sheer exhaustion from dealing with a body that no longer functions optimally. Part of it might be loss of identity with those who must give up a career due to illness. Part of it may be the humiliation of realizing you need help with personal things like using the restroom. Part of it may be the loss of social status when you can no longer leave your home. Part of it may be guilt that you can no longer be the ideal parent or spouse. And part of it is the way the disabled are treated by our government and society at large. How cheerful would someone be waiting years with no income to obtain benefits that they have already earned? Benefits that wouldn't be enough to cover a mortgage or maybe even rent? Poverty due to illness does not a happy camper make.
Wanted to mention right here that I was kinda rough on Dan in last night's post. I'm not mad at him so much as angry at the situation.....angry about having to petition Social Security for money, angry with my LTD company for blowing me off for three months, angry that most of the funds I could access to help me out are only available to me once I'm actually receiving SSDI. Angry that Dan's working his ass off and we have so little to show for it.
And Dan IS working his ass off. In addition to full time work, he has to do all the cleaning, laundry, yard work, shopping, walking the dog, etc. He has to drive me around to appointments and errands at least four days a week on the average. And he is still trying to find another job, one that still provides a living wage. If I were still able to work, at least the pressure to find a certain amount of pay would be a lot less. But all I can do is watch him stress himself to a frazzle and tell him how much I appreciate all he does for me. Ironic that I'm seven years older than he is, yet he is the one with the grey hairs. He's only 34. That definitely falls into the "not fair" category.
Again, I had a nice conclusion to all this, but I'm too tired now to remember what it was.
Here is a big one with me: that it is difficult to adequately impress upon certain people how life-changing chronic illness can be. You know, the ones who say they know exactly what chronic fatigue syndrome feels like because they've been tired before, or who say they know all about rheumatoid arthritis because they have a trick knee? I can appreciate the ones who are genuinely trying to understand, but all too often, the people who don't get it are the ones who equate illness with moral shortcomings or laziness. Like last night, I won't name any names, but more than one person in my life has either implied or flat out told me to my face that I am sick because I "made" myself that way, or that I'm sick because it's convenient for me to sit on my fat butt and not work. Oh, hell, yeah, it's very convenient for me to take a $30,000 per year pay cut and give Dan premature grey hairs (for those of you unsure, this is me being facetious).
I'm not trying to be cruel to those with minor ailments, but I'd like to try to explain the difference between someone who has quality of life and someone who does not. Someone who has the flu, for example, really feels like hell for that week or two they are sick, to be sure, but this is not a serious compromise of quality of life because most of the time, the person with the flu has a foreseeable end to the crisis at hand and can put their regular activities on hold briefly. In other words, they can usually bounce back good as new. But someone with fibromyalgia feels like they have a severe case of the flu EVERY DAY, and there is no end in sight. So they can't put major life activities on hold indefinitely.... eventully, they must try to get out of bed and figure out how to function despite the body aches, fatigue and brain fog. Part of this learning how to function while ill usually requires scaling back any activity not absolutely essential....in other words, giving up the fun stuff so you still have the energy to take care of yourself. When you must relinquish your favorite activities due to illness, that is adversely affecting your quality of life.
Another example might be that person with minor osteoarthritis in their knee. Yeah, that pain is pretty bothersome, and might keep them from being able to run sometimes. But unless running is a routine activity for them, they probably don't think about their knee more than occasionally and can pop a couple of Aleve for relief. And they will probably still be able to walk on it. So, yes, it does interfere in their life, but not in a major way. Someone with an autoimmune disease causing arthritis, though, may have the same amount of pain in their knee as the osteoarthritis guy, but they ALSO have it in the other knee, and maybe their entire spine, hands, wrists, hips, feet, ankles, shoulders, etc. And it may hurt all the time, not just when they run. If they have rheumatoid arthritis, their joints may become deformed to the point where they won't work properly at all. Have you ever considered spending every single day with hands that you can't straighten, hands that won't button a button, hands that can't hold a pen or type at a keyboard? Or spending every single day unable to walk? When your body becomes impaired to the point that you require the assistance of others to take care of yourself, that is adversely affecting your quality of life.
Yeah, my analogies may be a bit simplistic, but you'd be amazed how many people believe that someone with severe rheumatoid arthritis can still do whatever they like if they really want to. Or the millions of people who believe that someone with CFIDS only needs the right mindset to "get over" their illness. There exists an attitude amongst the healthy that those who become depressed as a result of chronic illness are just sitting around feeling sorry for themselves. Well, it's a little more complicated than that. Part of it is just the sheer exhaustion from dealing with a body that no longer functions optimally. Part of it might be loss of identity with those who must give up a career due to illness. Part of it may be the humiliation of realizing you need help with personal things like using the restroom. Part of it may be the loss of social status when you can no longer leave your home. Part of it may be guilt that you can no longer be the ideal parent or spouse. And part of it is the way the disabled are treated by our government and society at large. How cheerful would someone be waiting years with no income to obtain benefits that they have already earned? Benefits that wouldn't be enough to cover a mortgage or maybe even rent? Poverty due to illness does not a happy camper make.
Wanted to mention right here that I was kinda rough on Dan in last night's post. I'm not mad at him so much as angry at the situation.....angry about having to petition Social Security for money, angry with my LTD company for blowing me off for three months, angry that most of the funds I could access to help me out are only available to me once I'm actually receiving SSDI. Angry that Dan's working his ass off and we have so little to show for it.
And Dan IS working his ass off. In addition to full time work, he has to do all the cleaning, laundry, yard work, shopping, walking the dog, etc. He has to drive me around to appointments and errands at least four days a week on the average. And he is still trying to find another job, one that still provides a living wage. If I were still able to work, at least the pressure to find a certain amount of pay would be a lot less. But all I can do is watch him stress himself to a frazzle and tell him how much I appreciate all he does for me. Ironic that I'm seven years older than he is, yet he is the one with the grey hairs. He's only 34. That definitely falls into the "not fair" category.
Again, I had a nice conclusion to all this, but I'm too tired now to remember what it was.
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