Fuck the Parkinson's, the Dr just gave me a reason to smoke MORE!
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satyrday
Well-Known Member
Don't know about them all, but it creeps me out that facebook is so heavy-handed about using your real name. I guess that's the whole purpose of it though. It's not one for me! I do have a snooper account just so I can lurk about sometimes.
Dreamerr
Always in a state of confusion and silliness♀
I hate fb most of all but have an account for coupons and stuff. I defriended most so I don't get into fights but I still manage sometimes. I also don't use my real name. I changed it long ago so nobody can find me. People who know me can get in touch old school and if they moved beyond that then oh well.
It's 5:50 AM and I had another body lock up. Scary shit! I'm waiting on my cloud to heat so I can get back to sleep. Must wake up refreshed to continue jokes of poop, farting, and Dorks, Ships, and myselfs mental illness'.
Sometimes I feel like the meds make my Parkinson's worse, maybe if I snort them things will be different?
Sometimes I feel like the meds make my Parkinson's worse, maybe if I snort them things will be different?
It's 5:50 AM and I had another body lock up. Scary shit! I'm waiting on my cloud to heat so I can get back to sleep. Must wake up refreshed to continue jokes of poop, farting, and Dorks, Ships, and myselfs mental illness'.
Sometimes I feel like the meds make my Parkinson's worse, maybe if I snort them things will be different?
I feel the same about the medication I take for my particular ailment...not sure how it works with Parkinsons, but sometimes it takes awhile for your body to get used to everything before you see some positive effects.
Edit: Just started watching this doc...thought you guys might find this one interesting.
Sometimes I think the meds regulate the symptoms and keep them going to force you into repurchasing. I have no doubt that pharmaceutical companies have some shady way's of keeping profitability up so those fat fuck boards members keep fucking those fat cats!
Does Halliburton own Merck?
Does Halliburton own Merck?
Enchantre
Oil Painter
This article links Parkinsons, along with other ills, to statin drugs. Personally, I don't trust pharmacuetical companies as far as I could drop-kick them, but then I'm very old-school in my distrust of the establishment.
I'm a fan of nourishing food, natural remedies, and gentle exercise... and "big gun" drugs for acute issues.
Of course, MMJ is natural, and laughter helps most of all.
I'm a fan of nourishing food, natural remedies, and gentle exercise... and "big gun" drugs for acute issues.
Of course, MMJ is natural, and laughter helps most of all.
Vicki
Herbal Alchemist
It's hard to explain to people/friends what it is like to live with a chronic illness/chronic pain. I share this story so people can try to understand. Maybe you can use it too, mvapes. 
I think it this puts it into perspective. Of course, you can substitute any disease for Lupus. i.e.-Rheumatoid Disease, Parkinson's Disease, etc.
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like... normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I think it this puts it into perspective. Of course, you can substitute any disease for Lupus. i.e.-Rheumatoid Disease, Parkinson's Disease, etc.My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like... normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
Vicki
Herbal Alchemist
I had to put this into two posts because it was too long. Here is the end of the story.....
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
stickstones
Vapor concierge
that was eye opening and beautiful, Vickie...thanks for letting us in and helping us to understand.
Vicki - you made me cry.
It's so ironic that you told this story. Just yesterday my wife finally started asking questions. She asked what it feels like. Well, as we all know I have a constant tremor in my right hand. I told her as I cried trying to explain, to grab my right hand and don't let go until I say so. Vicki - she held my hand with tears pouring from her eyes until I said let go. After I did that, I said - you see how the shaking stops for you?
Well I can't fucking do that! She cried hysterically and by no means was I trying to upset this amazing woman I married, but if anyone should, she should know why her husband is so fucking sad!
Vicki - your an amazing woman, I'm honored to follow you. Maybe someday, we'll even get to medicate together.
Your dreams will come true sister, I promise you that.....
It's so ironic that you told this story. Just yesterday my wife finally started asking questions. She asked what it feels like. Well, as we all know I have a constant tremor in my right hand. I told her as I cried trying to explain, to grab my right hand and don't let go until I say so. Vicki - she held my hand with tears pouring from her eyes until I said let go. After I did that, I said - you see how the shaking stops for you?
Well I can't fucking do that! She cried hysterically and by no means was I trying to upset this amazing woman I married, but if anyone should, she should know why her husband is so fucking sad!
Vicki - your an amazing woman, I'm honored to follow you. Maybe someday, we'll even get to medicate together.
Your dreams will come true sister, I promise you that.....
Vicki
Herbal Alchemist
It has always been so hard for me to explain what it's like to live with a chronic illness. Then, I ran across this story, and now I share it with everyone I know.
I'm sorry I didn't share it here sooner. I honestly didn't mean to upset anyone, or make them cry. That was not my intention. Although, it is understandable. I just hope it helps people understand, just a little bit, what people like I and mvapes go through on a daily basis. All people like us want is understanding. Never pity.
I'm sorry I didn't share it here sooner. I honestly didn't mean to upset anyone, or make them cry. That was not my intention. Although, it is understandable. I just hope it helps people understand, just a little bit, what people like I and mvapes go through on a daily basis. All people like us want is understanding. Never pity.
RUDE BOY
Space is the Place
Vicki thanks so much for sharing your story I wish I could write like that .
In the course of my Illness , and I should just "Come out" as being a PLWA [person living with AIDS] I too have a limited number of "spoons" . Very few of the people in my life can understand this . Like you've stated just waking up can wear me out , Once I shower and shave I have to rest then drink coffee eat take meds and rest .... on and on.... every action seems to bring on fatique and pain . I 've even Had a family member who has told me more then once that i'm just lazy and am just using my Illness to Live the "easy Life".
Oddly enough if I offer them my morning handfull of Drugs too see if they thought they could make it through the day just taking my meds , not even dealing with the havic wreaked On my body due to hiv itself or 23 years of Aids treatment they turn down the offer . I did have one GF who did take one of my protease inhibitors , One pill [at the time I was taking 4 in the morning and 4 at night along with 12 more drugs] and was totally understanding afterwards , sick for two days .[ I don't really recommend sharing these drugs she took it on her own ]
Just A Thanx Again for the spoon analogy , hope you don't mind if I borrow it in the future .
EDIT: Tweek thanks for the documentary
In the course of my Illness , and I should just "Come out" as being a PLWA [person living with AIDS] I too have a limited number of "spoons" . Very few of the people in my life can understand this . Like you've stated just waking up can wear me out , Once I shower and shave I have to rest then drink coffee eat take meds and rest .... on and on.... every action seems to bring on fatique and pain . I 've even Had a family member who has told me more then once that i'm just lazy and am just using my Illness to Live the "easy Life".
Oddly enough if I offer them my morning handfull of Drugs too see if they thought they could make it through the day just taking my meds , not even dealing with the havic wreaked On my body due to hiv itself or 23 years of Aids treatment they turn down the offer . I did have one GF who did take one of my protease inhibitors , One pill [at the time I was taking 4 in the morning and 4 at night along with 12 more drugs] and was totally understanding afterwards , sick for two days .[ I don't really recommend sharing these drugs she took it on her own ]
Just A Thanx Again for the spoon analogy , hope you don't mind if I borrow it in the future .
EDIT: Tweek thanks for the documentary
Enchantre
Oil Painter
Vicki, that was lovely...
That can be used for my fibro, as well. Some days, I wake up and find out that I have very, very few spoons. Usually my spoons are trades... or, hmm, that's not the right analogy. Anyway... I can deal with either one stresser or another, just not both. I can walk for miles, for instance, unless it is hot. Okay, not as many miles as I used to. I can go fast, or I can go far. If I use up a few spoons today doing a long walk, then tomorrow, I'll have very few spoons for anything.
And some days, like today (actually, the entire past week), it doesn't seem to matter much at all what the hell I do, I just freakin' hurt. Random muscle spasms.
That can be used for my fibro, as well. Some days, I wake up and find out that I have very, very few spoons. Usually my spoons are trades... or, hmm, that's not the right analogy. Anyway... I can deal with either one stresser or another, just not both. I can walk for miles, for instance, unless it is hot. Okay, not as many miles as I used to. I can go fast, or I can go far. If I use up a few spoons today doing a long walk, then tomorrow, I'll have very few spoons for anything.
And some days, like today (actually, the entire past week), it doesn't seem to matter much at all what the hell I do, I just freakin' hurt. Random muscle spasms.
RUDE BOY
Space is the Place
Its real life ! We're slinging poop for fun one minute , then becoming serious , introspective and caring the next . But can we agree that the time slinging poop is improtant to dealing and healing .
Vicki
Herbal Alchemist
I didn't write this, but I think it applies here as well. I read it often, to remind myself I'm only human. As are all of us. 
I really like #5. Doctors, please remember, I am not a damn guinea pig!
10 Things I’ve Learned From Living With Chronic Illness
1. Getting all of the rest that I need does not make me lazy. Even when I’m not moving, my body is expending a huge amount of energy on powering its overactive immune system, and on defending itself from the subsequent pain and inflammation. So while many times it might look like I’m not doing much, I’m still probably doing more than most others.
2. No matter how much it hurts, I still have to find a way to move. (Of course, I’m not advocating for movement that results in injury/harm.) During one of my first major bouts, I thought that the best thing to do was to move as little as possible. This really didn’t lower the pain, but it did eventually result in atrophied muscles, months of daily physical therapy, and having to learn how to walk again.
3. If I’m going to be in pain, I might as well be doing something that I enjoy. I may not be able to do certain things like I once used to be able to, but chances are I can still do more than what I thought possible. Learning this lesson, firsthand, is priceless for my mind, body, and soul.
4. And for those moments when it’s just not possible to do something, cancelling at the last minute is perfectly acceptable. I’ll be honest, and I’ll tell you the exact reasons why I’m not able to participate. Please don’t take it personally…I’m just as disappointed, if not more, than you are.
5. If you are a doctor or healthcare professional, you must earn my respect. I, the patient, will work just as hard to earn your respect. I will ask lots of questions, and I will listen to what you have to say. When it comes to treatment options, though, I will be the final decision maker. (After all, no one knows my body better than I do.)
6. Achieving acceptance is hard. (I used to think that doing so meant “giving up.”) Just when it feels like I’ve accepted everything there is about my illness, something pops up, and I want to deny everything, all over again. With chronic illness, I don’t think there is such a thing as “complete” acceptance…there’s just a continuous journey, back and forth, between denial, acceptance, and so many other emotions.
7. No matter how bad I’m feeling, no matter how much pain I’m in, it’s *not* okay to take out my anger and frustrations on other people, especially those who are close to me. Yes, it’s fine–sometimes even healthy–to feel angry and frustrated…but I have to know how to release this energy in a way that doesn’t harm myself, or those around me.
8. Never, ever, compare my pain and illness to those of others. My illness is mine, and mine alone. I’m completely entitled to feel everything–emotions, symptoms, and otherwise–that results from living with my illness. (I’m entitled to feel everything, that is, except shame.)
9. While a positive attitude isn’t going to “cure” me of my illness, it’s certainly going to make it easier to overcome the challenges that I encounter on a daily basis. Yes, I do have occasional periods of doom and gloom…but I make a point to pass through them as quickly as possible. The mind is a powerful tool, and I must use it to my advantage.
10. Just when it feels like my world is going to fall apart, the best thing for me to do is to sit down, and take a deep breath. And another one. And another one…until I realize that everything is indeed okay.
I really like #5. Doctors, please remember, I am not a damn guinea pig! 10 Things I’ve Learned From Living With Chronic Illness
1. Getting all of the rest that I need does not make me lazy. Even when I’m not moving, my body is expending a huge amount of energy on powering its overactive immune system, and on defending itself from the subsequent pain and inflammation. So while many times it might look like I’m not doing much, I’m still probably doing more than most others.
2. No matter how much it hurts, I still have to find a way to move. (Of course, I’m not advocating for movement that results in injury/harm.) During one of my first major bouts, I thought that the best thing to do was to move as little as possible. This really didn’t lower the pain, but it did eventually result in atrophied muscles, months of daily physical therapy, and having to learn how to walk again.
3. If I’m going to be in pain, I might as well be doing something that I enjoy. I may not be able to do certain things like I once used to be able to, but chances are I can still do more than what I thought possible. Learning this lesson, firsthand, is priceless for my mind, body, and soul.
4. And for those moments when it’s just not possible to do something, cancelling at the last minute is perfectly acceptable. I’ll be honest, and I’ll tell you the exact reasons why I’m not able to participate. Please don’t take it personally…I’m just as disappointed, if not more, than you are.
5. If you are a doctor or healthcare professional, you must earn my respect. I, the patient, will work just as hard to earn your respect. I will ask lots of questions, and I will listen to what you have to say. When it comes to treatment options, though, I will be the final decision maker. (After all, no one knows my body better than I do.)
6. Achieving acceptance is hard. (I used to think that doing so meant “giving up.”) Just when it feels like I’ve accepted everything there is about my illness, something pops up, and I want to deny everything, all over again. With chronic illness, I don’t think there is such a thing as “complete” acceptance…there’s just a continuous journey, back and forth, between denial, acceptance, and so many other emotions.
7. No matter how bad I’m feeling, no matter how much pain I’m in, it’s *not* okay to take out my anger and frustrations on other people, especially those who are close to me. Yes, it’s fine–sometimes even healthy–to feel angry and frustrated…but I have to know how to release this energy in a way that doesn’t harm myself, or those around me.
8. Never, ever, compare my pain and illness to those of others. My illness is mine, and mine alone. I’m completely entitled to feel everything–emotions, symptoms, and otherwise–that results from living with my illness. (I’m entitled to feel everything, that is, except shame.)
9. While a positive attitude isn’t going to “cure” me of my illness, it’s certainly going to make it easier to overcome the challenges that I encounter on a daily basis. Yes, I do have occasional periods of doom and gloom…but I make a point to pass through them as quickly as possible. The mind is a powerful tool, and I must use it to my advantage.
10. Just when it feels like my world is going to fall apart, the best thing for me to do is to sit down, and take a deep breath. And another one. And another one…until I realize that everything is indeed okay.
momofthegoons
vapor accessory addict
That's the beauty of this forum, imo, compared to many other mj forums. It's family to many. We share a good portion of our day with eachother. We make eachother laugh, cry, and some of us manage to piss each other off.
Yup... just like family.
Now Dorkus, about the poop.... I have changed a few too many diapers in my day, children and adult, to really enjoy it anymore. I can appreciate it; but not enjoy it.
Dreamerr
Always in a state of confusion and silliness♀
Vicki thanks for reminding us about the spoons. I have read that a while back and totally forgot it. I am now going to copy it to a doc file and fix it for my situation as well as your other two posts. I think I need that chart on my fridge to alert the family as to whether or not they should even look at me that day hehe.
I like this forum for all of the reasons mom said.
I like this forum for all of the reasons mom said.
