how severe is your ME-CFS?
- Thread starter SaveMe
- Start date
sick of cfs,
alot of my close friends told me I sound like a reporter sometimes. haha. I admit, I do ask alot of questions. I don't know why--I like it?
Im a little bored right now, and am just curious how severe this is for some people, cuz for me its pretty bad. I am dizzy all the time, even in school, which really sucks.
no i am not a journalist, I have me-cfs unfortunately---I denied it for some while though.
trust me, i would be out playing tennis right now..not in some chat room where most people here are twice my age.
and im sick of people asking whether im a spy, reporter, or work for some agency. NO DAMIT-- i have CFS, and ive had it for over a year and a half. the 17 symptoms I posted is what I experience EVERY DAY. this shitty illness wont leave me alone-
alot of my close friends told me I sound like a reporter sometimes. haha. I admit, I do ask alot of questions. I don't know why--I like it?
Im a little bored right now, and am just curious how severe this is for some people, cuz for me its pretty bad. I am dizzy all the time, even in school, which really sucks.
no i am not a journalist, I have me-cfs unfortunately---I denied it for some while though.
trust me, i would be out playing tennis right now..not in some chat room where most people here are twice my age.
and im sick of people asking whether im a spy, reporter, or work for some agency. NO DAMIT-- i have CFS, and ive had it for over a year and a half. the 17 symptoms I posted is what I experience EVERY DAY. this shitty illness wont leave me alone-
Oh, have people asked you if you're a spy, reporter, or work for some agency?
Somebody here started a group for younger ME/CFS patients. Perhaps you can search for it or someone can link you to it. You might find it a beneficial addition to you experience here.
Many people here have had ME/CFS for many, many years. Possibly longer than you've been alive.
I doubt anyone would disagree with you that this illness is beyond miserable.
If you are dizzy all the time "even in school", you should check out some resources that might give you some support with your school experience. What level of school are you in?
Somebody here started a group for younger ME/CFS patients. Perhaps you can search for it or someone can link you to it. You might find it a beneficial addition to you experience here.
Many people here have had ME/CFS for many, many years. Possibly longer than you've been alive.
I doubt anyone would disagree with you that this illness is beyond miserable.If you are dizzy all the time "even in school", you should check out some resources that might give you some support with your school experience. What level of school are you in?
Oh, have people asked you if you're a spy, reporter, or work for some agency?
Somebody here started a group for younger ME/CFS patients. Perhaps you can search for it or someone can link you to it. You might find it a beneficial addition to you experience here.
Many people here have had ME/CFS for many, many years. Possibly longer than you've been alive. I doubt anyone would disagree with you that this illness is beyond miserable.
If you are dizzy all the time "even in school", you should check out some resources that might give you some support with your school experience. What level of school are you in?
Somebody here started a group for younger ME/CFS patients. Perhaps you can search for it or someone can link you to it. You might find it a beneficial addition to you experience here.
Many people here have had ME/CFS for many, many years. Possibly longer than you've been alive.
I doubt anyone would disagree with you that this illness is beyond miserable.If you are dizzy all the time "even in school", you should check out some resources that might give you some support with your school experience. What level of school are you in?
There is a big jump from
"I cant do "a lot" of things I could do before"
and
"I am housebound or bedbound"
I suspect many of us fall in between. Few of us can do the stuff we used to be able to do, some of us are bedbound, but many of us can do the minimum to feed and take care of ourselves, but not much more--i.e. not bedbound/housebound, but not very functional.
Sushi
"I cant do "a lot" of things I could do before"
and
"I am housebound or bedbound"
I suspect many of us fall in between. Few of us can do the stuff we used to be able to do, some of us are bedbound, but many of us can do the minimum to feed and take care of ourselves, but not much more--i.e. not bedbound/housebound, but not very functional.
Sushi
internet shopping?
pay someone to do it for you?
go by taxi at night or shops quietest time and pay the price later (most supermarkets have wheelchairs at least in the UK and most towns have at least one 24 hour supermarket)
alternatively most people who arent seriously underweight can survive for a few months without significant food provided they have water, especially if nearly comatose
I've tried them all
pay someone to do it for you?
go by taxi at night or shops quietest time and pay the price later (most supermarkets have wheelchairs at least in the UK and most towns have at least one 24 hour supermarket)
alternatively most people who arent seriously underweight can survive for a few months without significant food provided they have water, especially if nearly comatose
I've tried them all
When I was at my worst, I could still drive to a store 10 minutes away once every 2 or 3 weeks and I'd stock up on frozen microwavable meals. Not great, but survival even if you have to crawl to the microwave.
Sushi
Sushi
My daughter (with ME/CFS) is an undergrad and I taught undergrads for years before I was ill. I recognized the attitude.
There are resources at this link for students with dysautonomia, which you may have since you talk of dizziness and related symptoms.
http://www.dynakids.org/resources.jsp
Some of these articles are aimed at college students.
I suggest that you take some time to read through the many informational threads here. You may find many of your questions already answered.
This is a discussion forum. There are also chatrooms available here for, well, chatting. They are a great place to go when you are bored or discouraged and are looking for some immediate human contact.
My daughter goes to college near home because she would not have been able to take care of herself appropriately 4000 miles from home. You may find yourself in the same situation. Living in the dorm, as uncool as that might be, is another option some undergrads with ME/CFS use to manage self-care.
Have you been formally diagnosed? You may be able to get some resources from your college as a disabled student.
We are fortunate that my husband has taken care of us during the 6-7 years my daughter and I have been ill. Without him, during periods when I was bedbound or housebound, I would have had to go out to do rare, minimal self-care activities such as medical care or shopping. It would have been at great cost to my health. Many PWCs DO have to go out when they are technically housebound, even if they spend the next several weeks/months recovering, because they have no choice. It's a tragedy.
There are many sad and amazing stories to be had here. I suggest you take some time to read the threads and discover them. Some of the people here struggle daily against incredible odds. You will learn a lot about the tragic and courageous face of ME/CFS.
PS Many of these people, such as Wonko and Sushi in above posts, deserve a great deal of respect for the strength and knowledge that have allowed them to survive under conditions that you probably can't (and hopefully won't) begin to imagine.
There are resources at this link for students with dysautonomia, which you may have since you talk of dizziness and related symptoms.
http://www.dynakids.org/resources.jsp
Some of these articles are aimed at college students.
I suggest that you take some time to read through the many informational threads here. You may find many of your questions already answered.
This is a discussion forum. There are also chatrooms available here for, well, chatting. They are a great place to go when you are bored or discouraged and are looking for some immediate human contact.
My daughter goes to college near home because she would not have been able to take care of herself appropriately 4000 miles from home. You may find yourself in the same situation. Living in the dorm, as uncool as that might be, is another option some undergrads with ME/CFS use to manage self-care.
Have you been formally diagnosed? You may be able to get some resources from your college as a disabled student.
We are fortunate that my husband has taken care of us during the 6-7 years my daughter and I have been ill. Without him, during periods when I was bedbound or housebound, I would have had to go out to do rare, minimal self-care activities such as medical care or shopping. It would have been at great cost to my health. Many PWCs DO have to go out when they are technically housebound, even if they spend the next several weeks/months recovering, because they have no choice. It's a tragedy.
There are many sad and amazing stories to be had here. I suggest you take some time to read the threads and discover them. Some of the people here struggle daily against incredible odds. You will learn a lot about the tragic and courageous face of ME/CFS.
PS Many of these people, such as Wonko and Sushi in above posts, deserve a great deal of respect for the strength and knowledge that have allowed them to survive under conditions that you probably can't (and hopefully won't) begin to imagine.
thats a shame... I cant believe this illness doesnt get more attention. HIV people have it great compared to CFS. Yet people think we somehow had this coming to us.
what the media should really cover is a story on the teenager who didnt smoke or drink, but liked to study, and who developed a mysterious illness that has now impacted his life to a great degree.
what the media should really cover is a story on the teenager who didnt smoke or drink, but liked to study, and who developed a mysterious illness that has now impacted his life to a great degree.
My daughter (with ME/CFS) is an undergrad and I taught undergrads for years before I was ill. I recognized the attitude.
There are resources at this link for students with dysautonomia, which you may have since you talk of dizziness and related symptoms.
http://www.dynakids.org/resources.jsp
Some of these articles are aimed at college students.
I suggest that you take some time to read through the many informational threads here. You may find many of your questions already answered.
This is a discussion forum. There are also chatrooms available here for, well, chatting. They are a great place to go when you are bored or discouraged and are looking for some immediate human contact.
My daughter goes to college near home because she would not have been able to take care of herself appropriately 4000 miles from home. You may find yourself in the same situation. Living in the dorm, as uncool as that might be, is another option some undergrads with ME/CFS use to manage self-care.
Have you been formally diagnosed? You may be able to get some resources from your college as a disabled student.
We are fortunate that my husband has taken care of us during the 6-7 years my daughter and I have been ill. Without him, during periods when I was bedbound or housebound, I would have had to go out to do rare, minimal self-care activities such as medical care or shopping. It would have been at great cost to my health. Many PWCs DO have to go out when they are technically housebound, even if they spend the next several weeks/months recovering, because they have no choice. It's a tragedy.
There are many sad and amazing stories to be had here. I suggest you take some time to read the threads and discover them. Some of the people here struggle daily against incredible odds. You will learn a lot about the tragic and courageous face of ME/CFS.
PS Many of these people, such as Wonko and Sushi in above posts, deserve a great deal of respect for the strength and knowledge that have allowed them to survive under conditions that you probably can't (and hopefully won't) begin to imagine.
There are resources at this link for students with dysautonomia, which you may have since you talk of dizziness and related symptoms.
http://www.dynakids.org/resources.jsp
Some of these articles are aimed at college students.
I suggest that you take some time to read through the many informational threads here. You may find many of your questions already answered.
This is a discussion forum. There are also chatrooms available here for, well, chatting. They are a great place to go when you are bored or discouraged and are looking for some immediate human contact.
My daughter goes to college near home because she would not have been able to take care of herself appropriately 4000 miles from home. You may find yourself in the same situation. Living in the dorm, as uncool as that might be, is another option some undergrads with ME/CFS use to manage self-care.
Have you been formally diagnosed? You may be able to get some resources from your college as a disabled student.
We are fortunate that my husband has taken care of us during the 6-7 years my daughter and I have been ill. Without him, during periods when I was bedbound or housebound, I would have had to go out to do rare, minimal self-care activities such as medical care or shopping. It would have been at great cost to my health. Many PWCs DO have to go out when they are technically housebound, even if they spend the next several weeks/months recovering, because they have no choice. It's a tragedy.
There are many sad and amazing stories to be had here. I suggest you take some time to read the threads and discover them. Some of the people here struggle daily against incredible odds. You will learn a lot about the tragic and courageous face of ME/CFS.
PS Many of these people, such as Wonko and Sushi in above posts, deserve a great deal of respect for the strength and knowledge that have allowed them to survive under conditions that you probably can't (and hopefully won't) begin to imagine.
Who knows? Very little is known about this illness.
She and I came down with same very sudden-onset flu-like illness 6-7 years ago. Maybe it's strictly viral. But then, I had some mild symptoms before that which may have been early ME/CFS.... or something else entirely.
My husband doesn't have ME/CFS despite close contact with us all these years. Why not if it is contagious at all?
My uncle has ME/CFS. He was not around us when we had the flu-like illness, but was already sick then.
Maybe a viral (or retroviral) infection PLUS a genetic factor are necessary for ME/CFS. Maybe it's been passed down vertically in my family somehow.
Other people have completely different experiences and paths to ME/CFS.
We simply don't have sufficient information, yet, to draw any conclusions. We have some interesting theories, but they don't currently answer all the questions about transmission, course of illness, or many other factors.
Bottom line: There is a lot we simply don't know, yet, and as patients we will still have to cope with that ambiguity for some years.
She and I came down with same very sudden-onset flu-like illness 6-7 years ago. Maybe it's strictly viral. But then, I had some mild symptoms before that which may have been early ME/CFS.... or something else entirely.
My husband doesn't have ME/CFS despite close contact with us all these years. Why not if it is contagious at all?
My uncle has ME/CFS. He was not around us when we had the flu-like illness, but was already sick then.
Maybe a viral (or retroviral) infection PLUS a genetic factor are necessary for ME/CFS. Maybe it's been passed down vertically in my family somehow.
Other people have completely different experiences and paths to ME/CFS.
We simply don't have sufficient information, yet, to draw any conclusions. We have some interesting theories, but they don't currently answer all the questions about transmission, course of illness, or many other factors.
Bottom line: There is a lot we simply don't know, yet, and as patients we will still have to cope with that ambiguity for some years.