how severe is your ME-CFS?

how severe is your ME -CFS?

  • I forget I have it most of the time

    Votes: 0 0.0%
  • I have some drawbacks from it

    Votes: 0 0.0%

  • Total voters
    32
  • Poll closed .

SOC

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You ask a lot of questions about our individual experiences for a relatively new member.

Out of curiosity, are you collecting information for some specific purpose, such as an article or other publication? Or are you just curious?
 
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You ask a lot of questions about our individual experiences for a relatively new member.

Out of curiosity, are you collecting information for some specific purpose, such as an article or other publication? Or are you just curious?
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-
 

SOC

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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-
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. :eek: 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?
 
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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. :eek: 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?
3rd year undergrad, sorry for the attitude.
 

Sushi

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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
 
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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
good point---->it was difficult for me come up with those options. any suggestions?
 
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I gotta question (And im not trying to be rude)
But how do you go to the grocery store and eat if you are housebound or bedbound?

You might say, someone helps you. But I live alone ~4000 miles away from my family.:(
 

Wonko

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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
 

Sushi

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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
 

SOC

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3rd year undergrad, sorry for the attitude.
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.
 
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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
It really stinks knowing how to answer my question with detail. A question that many people never have to consider. that must be such a struggle--and nobody knows what its like :( hang in there
 
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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
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.
 

SOC

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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.
You find the reporter and my daughter will give the interview.
 

SOC

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shux, both you and your daughter have this devastating disease? Did she have it her whole life?
Please read the posts in this thread -- which you started. This question has already been answered.
 
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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.
so do you speculate that you possibly passed it on to your daughter somehow? thanks
 

SOC

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so do you speculate that you possibly passed it on to your daughter somehow? thanks
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.
 
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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.
Maybe a viral (or retroviral) infection PLUS a genetic factor are necessary for ME/CFS.
I believe this theory will turn out to be correct through experimentation!

Though I do wonder about "clusters"