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brightrosefoxThis has been running around my head for a few weeks and I've been wanting to get it just right, so other people with disabilities and chronic illnesses can know that they're not alone and that if they're afraid, we can be afraid together.
To quote a friend:
"I’m not very functional. If you see me out and about, I’m either doing well, or I’m going to pay dearly for it later. Probably both."
What this means is that on the surface I might appear perfectly fine and normal in every aspect almost all the time. What this means is that as time goes on, I'm going to be worn down, exhausted, and unable to properly, correctly finish all the things I was doing well.
What this means is that if I have been able to recite entire poems, paragraphs, television dialogue, and instruction lists, I will be unable to do so when I go into a fog. I have been accused several times of lying about my memory disintegration, because if I can remember specific things constantly it must mean I have a perfect memory for everything. Here is the thing about the human brain and memory: Memory is insane. It is fickle. It lies all the time. It writes fanfiction of your life. Just because you can quote everything said by a character in a television show does not mean you have a good memory. It just means that when your brain is in a good place, you can quote everything said by a character in a television show - although these days I cheat by looking it up on Google because I actually can't recall everything. It just looks like I can. That's the trick. I seem so normal.
The point is, when someone is diagnosed with brain disorders such as memory disintegration, it means that it is happening now. Everything is happening now, has been happening for years, and will happen until death.
I have been accused several times of lying about my level of physical disability, because if I can walk and run without a cane for a few hours it must mean I don't actually need the cane or any sort of assistance. I have been accused several times of deliberately wanting my symptoms to get worse, of living inside my disorders so that I don't have to face reality, which aggravates and irritates me, since it is the exact opposite of what I actually do - reality is happening no matter what I believe, and my reality is that I am permanently disabled and I am not getting better. The thing about cerebral palsy is that patients as young as twenty-five will begin to feel physically aged due to wear and tear on their muscles, joints, bones, and nerves. This is called Post Impairment Syndrome.To quote: Post impairment syndrome is a combination of symptoms that affect adults with cerebral palsy. According to the National Institute of Neurological Disorders and Stroke, this combination includes fatigue, pain, arthritis and weakness that is often a part of daily life. This symptom is due to the muscle abnormalities and bony changes that happen as you age with cerebral palsy. You can use three to five times more energy each day than an able-bodied person just to complete your daily living activities. This extra expenditure of energy combined with the spasticity and extra wear on the joints is a hallmark symptom of adults who suffer from cerebral palsy.
What this means is that when I say that I feel sixty at age thirty, I really mean it. I am not exaggerating or subconsciously causing it. What this means is that no amount of positive magical thinking and no amount of disbelieving my conditions will make me better; I might feel better for a while after psychically insisting that I don't hurt too badly, but eventually that will stop working and the symptoms will strike even harder, especially if I have been highly active from my positive magical thinking and my belief that I was not in pain. What this means is that I can decide my symptoms are gone and my bodily systems will just laugh; for someone like me, there is no power to make myself not have symptoms. What this means is that my problems are not temporary inconveniences that I can massage, medicate, meditate, and wish away... when I explain that I feel decades older, I really mean it, and I cannot slowly heal myself just by forcing myself to feel better.
Having a permanent physical disability means that I cannot just recover easily. Having a chronic pain disorder means that I cannot just force pain to disappear. What this means is that no matter what, I will be living alongside my medical issues.What this means is that I am never the same from one minute to the next.
What this means is that I really need to quit talking about my health conditions with people who don't want to know. I make too many assumptions when acquaintances and random people ask about my conditions. I have to remind myself that they don't want to hear about it. I have to remind myself that people will start thinking that I do want to live inside my medical conditions if I talk about them in so much detail. I have to remind myself to simply say things like, "I am reasonable" and "I'm disabled with cerebral palsy" and to expand only if asked. When I get scolded, snapped at, accused, and told that nobody wants to know about my medical issues, I often don't understand what is really happening. I need to remind myself that social interaction means holding back. And this is why most social interaction makes me want to curl up and hug a book, because books don't scold me for trying to talk about myself. Also, cats. Cats just want me to pet them.
****
Long quote, which I am quoting because many people I have met over the past few months literally do not believe that my health is declining on its own, and they literally believe that I could just make myself feel better with magical thinking, ie positive thinking, law of attraction. This is also why I've joined support groups. Being told "You're making your disability worse on your own" is starting to chip away at my optimism. I'm making this public so those new acquaintances can read and come to their own conclusions.
All Americans are living longer than people did years ago, and people who have cerebral palsy (CP) are no exception. For people with disabilities, however, living to an old age is a new phenomenon. We are just now learning what it means to grow older with a disability.
Although much of the information we are gathering on the topic is discouraging, there are strategies to make aging with a disability a more successful experience. “I have seen many advances in diagnoses and treatments since I was young,” said Bonnie Witt, an adult who has cerebral palsy. “People with disabilities are living longer, more productive lives. Doctors who treat adults with disabilities are navigating uncharted territory. This is a fairly new area of medicine, so—in a small way—we are pioneers.”
Symptoms of Aging Appear Earlier
People without disabilities reach the peak of their physical function between ages 18 and 25. After that, their abilities decline about 1 percent per year. At age 70, therefore, people without disabilities are likely to have about 50 percent of their top lung function, 50 percent of their peak kidney function and so on.
Even before their abilities begin to decline, however, people who have disabilities typically don’t reach the same highest points of physical function that people without disabilities do. And when the decline begins, it might be steeper in people who have disabilities. Author and Professor Bryan Kemp reported that people with disabilities show a decline of 1.5 to 5 percent per year after reaching their highest level of physical function.
In addition, people with disabilities experience aging-related changes years earlier than their non-disabled peers do. Although study results vary, aging-related changes generally occur 20 to 30 years after the onset of a disability. For people who have CP, such changes can occur in the 20s, 30s or 40s.
Pain Is Common
Pain is the most common initial problem for adults with CP. Studies show that most of the older adults who have CP report daily pain. One-third report constant pain.
The hip, knee, back and neck are the most common sites of pain. Medication is the most common treatment for pain. Studies show that 92 percent of people with CP report that exercise helps their pain symptoms, but only 49 percent report that they exercise even infrequently. People with disabilities use other methods of pain treatment, such as biofeedback or counseling, less frequently than people who don’t have disabilities do.
People with CP who walk have the most problems with pain, because their gait and movement patterns cause abnormal wear and tear on their bodies. That leads to arthritis. Twenty-five percent of people with CP who walk as children lose that ability as teens or adults. Others stop ambulating in their 40s because of pain. For all people with CP who continue to walk, distance is compromised—in other words, they can’t walk as far as they used to.
Additional Issues
People who are in pain typically experience more fatigue than other people do, so they tend to do less and rest more. When people are less active, they lose strength and endurance. Less strength means less ability to perform necessary or enjoyable activities, and it results in a decreased ability to care for oneself. That, in turn, can lead to depression, a need to ask more from family members or a need to hire more assistance. The effect on relationships and the corresponding financial consequences are obvious.
Falls are very common in adults with CP. Reports show that 40 percent of adults with CP fall at least once each month, and 75 percent fall every two months. In fact, falling is so common that most people do not even think of reporting the falls to their doctors.
Because the risk of breaking a bone increases with age, it’s important to improve strength and to plan movements, as much as possible, to reduce the incidence of falls. Other problems that occur in people who are aging with CP include increased bowel and bladder problems and more joint contractures.
***
To quote a friend:
"I’m not very functional. If you see me out and about, I’m either doing well, or I’m going to pay dearly for it later. Probably both."
What this means is that on the surface I might appear perfectly fine and normal in every aspect almost all the time. What this means is that as time goes on, I'm going to be worn down, exhausted, and unable to properly, correctly finish all the things I was doing well.
What this means is that if I have been able to recite entire poems, paragraphs, television dialogue, and instruction lists, I will be unable to do so when I go into a fog. I have been accused several times of lying about my memory disintegration, because if I can remember specific things constantly it must mean I have a perfect memory for everything. Here is the thing about the human brain and memory: Memory is insane. It is fickle. It lies all the time. It writes fanfiction of your life. Just because you can quote everything said by a character in a television show does not mean you have a good memory. It just means that when your brain is in a good place, you can quote everything said by a character in a television show - although these days I cheat by looking it up on Google because I actually can't recall everything. It just looks like I can. That's the trick. I seem so normal.
The point is, when someone is diagnosed with brain disorders such as memory disintegration, it means that it is happening now. Everything is happening now, has been happening for years, and will happen until death.
I have been accused several times of lying about my level of physical disability, because if I can walk and run without a cane for a few hours it must mean I don't actually need the cane or any sort of assistance. I have been accused several times of deliberately wanting my symptoms to get worse, of living inside my disorders so that I don't have to face reality, which aggravates and irritates me, since it is the exact opposite of what I actually do - reality is happening no matter what I believe, and my reality is that I am permanently disabled and I am not getting better. The thing about cerebral palsy is that patients as young as twenty-five will begin to feel physically aged due to wear and tear on their muscles, joints, bones, and nerves. This is called Post Impairment Syndrome.To quote: Post impairment syndrome is a combination of symptoms that affect adults with cerebral palsy. According to the National Institute of Neurological Disorders and Stroke, this combination includes fatigue, pain, arthritis and weakness that is often a part of daily life. This symptom is due to the muscle abnormalities and bony changes that happen as you age with cerebral palsy. You can use three to five times more energy each day than an able-bodied person just to complete your daily living activities. This extra expenditure of energy combined with the spasticity and extra wear on the joints is a hallmark symptom of adults who suffer from cerebral palsy.
What this means is that when I say that I feel sixty at age thirty, I really mean it. I am not exaggerating or subconsciously causing it. What this means is that no amount of positive magical thinking and no amount of disbelieving my conditions will make me better; I might feel better for a while after psychically insisting that I don't hurt too badly, but eventually that will stop working and the symptoms will strike even harder, especially if I have been highly active from my positive magical thinking and my belief that I was not in pain. What this means is that I can decide my symptoms are gone and my bodily systems will just laugh; for someone like me, there is no power to make myself not have symptoms. What this means is that my problems are not temporary inconveniences that I can massage, medicate, meditate, and wish away... when I explain that I feel decades older, I really mean it, and I cannot slowly heal myself just by forcing myself to feel better.
Having a permanent physical disability means that I cannot just recover easily. Having a chronic pain disorder means that I cannot just force pain to disappear. What this means is that no matter what, I will be living alongside my medical issues.What this means is that I am never the same from one minute to the next.
What this means is that I really need to quit talking about my health conditions with people who don't want to know. I make too many assumptions when acquaintances and random people ask about my conditions. I have to remind myself that they don't want to hear about it. I have to remind myself that people will start thinking that I do want to live inside my medical conditions if I talk about them in so much detail. I have to remind myself to simply say things like, "I am reasonable" and "I'm disabled with cerebral palsy" and to expand only if asked. When I get scolded, snapped at, accused, and told that nobody wants to know about my medical issues, I often don't understand what is really happening. I need to remind myself that social interaction means holding back. And this is why most social interaction makes me want to curl up and hug a book, because books don't scold me for trying to talk about myself. Also, cats. Cats just want me to pet them.
****
Long quote, which I am quoting because many people I have met over the past few months literally do not believe that my health is declining on its own, and they literally believe that I could just make myself feel better with magical thinking, ie positive thinking, law of attraction. This is also why I've joined support groups. Being told "You're making your disability worse on your own" is starting to chip away at my optimism. I'm making this public so those new acquaintances can read and come to their own conclusions.
All Americans are living longer than people did years ago, and people who have cerebral palsy (CP) are no exception. For people with disabilities, however, living to an old age is a new phenomenon. We are just now learning what it means to grow older with a disability.
Although much of the information we are gathering on the topic is discouraging, there are strategies to make aging with a disability a more successful experience. “I have seen many advances in diagnoses and treatments since I was young,” said Bonnie Witt, an adult who has cerebral palsy. “People with disabilities are living longer, more productive lives. Doctors who treat adults with disabilities are navigating uncharted territory. This is a fairly new area of medicine, so—in a small way—we are pioneers.”
Symptoms of Aging Appear Earlier
People without disabilities reach the peak of their physical function between ages 18 and 25. After that, their abilities decline about 1 percent per year. At age 70, therefore, people without disabilities are likely to have about 50 percent of their top lung function, 50 percent of their peak kidney function and so on.
Even before their abilities begin to decline, however, people who have disabilities typically don’t reach the same highest points of physical function that people without disabilities do. And when the decline begins, it might be steeper in people who have disabilities. Author and Professor Bryan Kemp reported that people with disabilities show a decline of 1.5 to 5 percent per year after reaching their highest level of physical function.
In addition, people with disabilities experience aging-related changes years earlier than their non-disabled peers do. Although study results vary, aging-related changes generally occur 20 to 30 years after the onset of a disability. For people who have CP, such changes can occur in the 20s, 30s or 40s.
Pain Is Common
Pain is the most common initial problem for adults with CP. Studies show that most of the older adults who have CP report daily pain. One-third report constant pain.
The hip, knee, back and neck are the most common sites of pain. Medication is the most common treatment for pain. Studies show that 92 percent of people with CP report that exercise helps their pain symptoms, but only 49 percent report that they exercise even infrequently. People with disabilities use other methods of pain treatment, such as biofeedback or counseling, less frequently than people who don’t have disabilities do.
People with CP who walk have the most problems with pain, because their gait and movement patterns cause abnormal wear and tear on their bodies. That leads to arthritis. Twenty-five percent of people with CP who walk as children lose that ability as teens or adults. Others stop ambulating in their 40s because of pain. For all people with CP who continue to walk, distance is compromised—in other words, they can’t walk as far as they used to.
Additional Issues
People who are in pain typically experience more fatigue than other people do, so they tend to do less and rest more. When people are less active, they lose strength and endurance. Less strength means less ability to perform necessary or enjoyable activities, and it results in a decreased ability to care for oneself. That, in turn, can lead to depression, a need to ask more from family members or a need to hire more assistance. The effect on relationships and the corresponding financial consequences are obvious.
Falls are very common in adults with CP. Reports show that 40 percent of adults with CP fall at least once each month, and 75 percent fall every two months. In fact, falling is so common that most people do not even think of reporting the falls to their doctors.
Because the risk of breaking a bone increases with age, it’s important to improve strength and to plan movements, as much as possible, to reduce the incidence of falls. Other problems that occur in people who are aging with CP include increased bowel and bladder problems and more joint contractures.
***
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Date: 2013-11-19 03:11 am (UTC)no subject
Date: 2013-11-19 08:34 pm (UTC)