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"So you're really faking it?!"

Nielk

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If you can't count on family members to understand who can you count on?

It was my birthday yesterday and my children and grandchildren came over to celebrate with a cake.
I was talking to my son-in-law who is a lawyer telling him how inappropriate the CDC has been to us CFS sufferers and
how they disalocated funds that were earmarked for CFS. He said that it's very hard to prove that they did anything wrong to us
and he was in middle of explaining, when my daughter-in-law says (real loud) "well if you would sue them and the case would go to jury
and they find for example that the money was used for cancer research don't you think the jury would be siding with the CDC?"

I felt like she just punched me in the face. I didn't realize till then how she felt about CFS but, obviously she agrees that no money should go to study CFS
as long as there is cancer in the world. As if CFS is like having a cold or worse lazy people complaining about imaginary symptoms!
This is from somebody who has seen me suffering since she met my son (3 years ago).

At least now I know how she feels.
 

leela

Slow But Hopeful
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:thumbsup:"Indeed. And if Child Services came to your house and gave your children away to a REAL mother, and you sued them, don't you think a jury would
side with the REAL mother? Oh and Happy Birthday to me."
 
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What really bothers me is that a lot of people that have a functioning body and 90% more energy than we have, are actually chronically lazy or complaining about minimal efforts. I know a person that works 6 hours in a pet shop and he doesn't stop complaining how hard his work is, how tired he is in the evening and how he doesn't have enough energy to do anything except work, eat and sleep. If I had his body and energy I would build an house and run a marathon daily (kinda)

So he is actually the lazy one, the complaining one, a person (like many others) that never learned the vital skills of adaptation, flexibility, will-power; but if we were to be compared I would be considered the "lazy" one, because I don't (can't) work six hours in a pet shop. But I actually think that considering my physical exhaustation level is a lot lower than his, I actually do a lot more than him. It's like saying that if a person with a pain tolerace of 5 is stung with a needle and a person with pain tolerance 100 is cut with knife, objectively the person stung with the needle has experienced more pain.

I have read there's actually a very simple way to test for CFS
In fact if you do any physical activity for 30 minutes, the next day you're supposed to match your performance from the previous day
Every healthy people, no matter how lazy, can pedal to the point of fatigue on sunday and doing the same on monday with the point of fatigue being the same.
A person with CFS will not be able to match the performance from the previous day and if he/she reached the point of fatigue after 10 minutes, he/she will reach it after 1 minute the next day, if he/she is able to move his/her leg muscles at all.

So, no matter how tired a person claims to be, no matter if one thinks one will collapse unless he sleeps 12 hours on sunday morning, no matter how tiring a person thinks his/her job is ... they're going to match an "activity to failure" performance from one day to another. A person with CFS isn't and this is as objective and pathological as it gets.

There are two reasons people don't understand.

First one: they feel fatigued too.
But it's a normal fatigue, explanaible by their activities and which goes away after a good night sleep
So you need to point out what you suffer from is long-lasting exhaustation not explanaible by activity and that doesn't improve with a good night sleep. Ask them if they remember how they feel when they have a bad flu, their legs feel tight and heavy and they can't even leave the beedroom. If so, then explain them that's how you feel IF you push too much.

And this leads to the second point: we are trying not to push ourselves too much
We're resting and reducing our activities, so people might actually see we're not always bedridden or so tired to be unable to talk
but they need to know that's so because we're living 50% to 90% less than they are, giving up studying, travelling, working, club dancing, playing and a lot of things we would rather do. Have you ever seen how agitated someone becomes when he/she doesn't have anything to do with his/her time?!

My theory is that humans have the extinct to do, even the lazy boy that doesn't do his homeworks, isn't planning to just breath and lay down but his going to practice with his skateboard or beat the video-game record (all things that could be considered learning, so he actually wants to learn... even if schools doesn't interest him) or have a basketball game. Tell this boy he can't do these thing but can lay down and stare the ceiling and he will get agitated and anxious. Tell a person he can sit on the coach for days if he wants to and within 2 days he will beg you to please involve him in some kind of activity or project. Humans want to do, being unable to do is the worst nightmare for a human.

So these people need to understand that we have to reduce our existence and waste our precious time in order to diplay the kind of semi-health we need for certain events and need to understand that partecipating to these events often means we'll have to rest in bed for three days in a row afterward with an extremely low pressure upon standing and muscle cramps; so we're actually sacrifing ourselves in order to please a person (to be at his birhday, at his marriage, at someone's mother funeral...)

When they tell you you're faking your fatigue, ask them "then why I give up on a lot of funny things, like cinema, dinners, parties, sport? I know lazy people who fake illnesses in order to have more free time and eschew works, but they also have lot of fun and are always going out, spending money at parties and clubs, travelling with friends. If I was faking it I would pretend I'm tired when there's something to do but would never miss a party, cinema, travel, vacation, sport-game and so on invitation; which is actually what I do all the time"

No sane human being would ruin his life in order to pretend to be sick.
If a person tells you that he would rather laying in bed unable to walk without pain and unable to dedicate his time to his hobbies, interests and passions rather than going to work; then you're allowed to say to this person that he is completely insane and actually the lazy one.

If a person tells you that he would be glad to live your life because it's total rest, then he is insane too. No sane person would spend his life staring at the ceiling rather than doing, which is the most important human instinct and the things humans love more, no matter how they claim to love "doing nothing", they don't!

Last thought: people have no problem understanding the issues of someone with an heart defect.
A person with a defective heart looks completely normal and can live a normal life as long as he doesn't push himself too much.
So when he is sick people have no problem understanding that "his heart is acting up" and when he feels good and partecipates in social life people have no problem understanding that "his heart is giving him some rest finally"
If they see the person walking on the street and laughing they don't think "he was faking the heart thing because he is fine now"

People have no problem understanding that if you're allergic to pollen it means that in those months there's pollen in the air you're going to be sick and that those months without pollen you're going to feel fine. If they see the person walking on the street and laughing on a pollen-free month, they're not going to think "he was faking the allergy thing, he is fine now"

In other words people have no problem understanding "reactive pathologies", those chronic pathologies that can be dormant or acute according to whether the trigger is there. CFS is a reactive pathology, it's a defective reaction to activity and its trigger is excessive or long-duration activity which for someone with CFS could mean also reading for 4 minutes or walking from bedroom to kitchen.

I don't say anymore i suffer from CFS, I say i have a defective neurovegetative system and can't tolerate any long-lasting activity without resting periodically or suffering flu-like symptoms (including fever in my case) the next day. If they bother me I use the "defective heart" analogy.

There are also several differences between someone with CFS and someone who is just being lazy or hipochondriac.

Lazy, hypochondriac people don't have swollen glands, fever or orthostatic low pressure.
Lazy, hypochondriac people feel better after exercising, people with CFS feel worse.
Lazy, hypochondriac people always underestimate their abilities, CFS people always overestimate their abilities
Lazy, hypochondriac people feel suddenly better if there's something interesting going on, like a dinner or a party, people with CFS don't and usually decline the invitation.
Lazy, hypochondriac people with a concentration/memory problem can "remember" if there are hints written on a sheet, people with CFS can't, because it's not that they have low memory but that their brain activity is fogged so even reading the actual answers to a test questions would still have them confused and writing the wrong answers (i.e a lazy student can pass a test using little sheets with hints, reminders or answers on if he didn't study for the test, a CFS student in a moment of brain fog can't even understand the questions and won't pass the test even if he studied and knew the answers the previous day)

Of course there are a lot of more differences involving post-exertional-malaise, medical check-ups, low immune system and so on but those above are the more straightforward and visible ones for a "skeptic"

P.S
I keep editing my message (that's the fifth time) because I can't write more than a couple dozen lines at a time.
Ask your "friend" whether that happens to her while she chats with her friend or when she's writing a post or comment about something she is interested to and whether that would happen if she was faking an ilnesses for whatever reason.

Keep in mind river, that each person gets sick differently. The guy you mentioned who works and comes homes and collapses may acutally be sick. He might even be on a crash course to being sicker.

Hard to keep an open mind to how each person has individual problems. My father who I lived with as a teenager couldn;t even remember that I was sick. however, I was the same way for years. Barely making it and collapsing every evening and on weekends.
 

Nielk

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(No sane human being would ruin his life in order to pretend to be sick.)

That's why many people think that we are insane.
They don't believe the misery that we are going through because they themselves have never
experienced it and unlike heart disease, they have not heard of CFS being a legitimate sickness.

My own daughter-in-law who has known me for three years intimately and seen me being bed bound and
suffering with crazy headaches, doesn't believe this illness exists.

How can we expect strangers who don't really know us to accept it?

I keep telling myself that it doesn't matter what others think, I know what I am feeling.
Yet, who am I kidding, everyone needs validation and acceptance.
 

SilverbladeTE

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at funeral of great aunt, they wanted me to carry and lower the coffin, um, no way
don't think they got it and ostracized me afterwards, sigh
hate HATE that even when well and wish folk would stop that practice, causes too many accidents anyway (not funny)

I tell folk I have ME, not CFS, CFS was designed by Wessely and anything he or Strauss etc does can rot in Hell!
I explain it's like having the Flu, all the time, and most of them get that that is very bad.

a very few twits who are bigots/nasty, I've suggested how would they liek risking me biting them and infecting them, if they think it doens't exist?
"ah not so damn cocky now, are you, smart arse?"
hehe ;)
 

Nielk

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at funeral of great aunt, they wanted me to carry and lower the coffin, um, no way
don't think they got it and ostracized me afterwards, sigh
hate HATE that even when well and wish folk would stop that practice, causes too many accidents anyway (not funny)

I tell folk I have ME, not CFS, CFS was designed by Wessely and anything he or Strauss etc does can rot in Hell!
I explain it's like having the Flu, all the time, and most of them get that that is very bad.

a very few twits who are bigots/nasty, I've suggested how would they liek risking me biting them and infecting them, if they think it doens't exist?
"ah not so damn cocky now, are you, smart arse?"
hehe ;)
I wish I could be as open and witty as you!
I feel so weak physically that I think it affects the way I feel about myself.
Like I'm not strong enough to answer with a good comeback.
I just sit there like an utter fool!

Didn't used to be that way.
I used to have a strong personality and fought for what I saw was right.
Their put down really works. (for me)
I feel useless although I know logically it doesn't make sense.
I'll blame it on the illness - being so sensitive.
 

SilverbladeTE

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NIelk
well, part of itis since I live with my Mum, I used ot look after her, now we look after each other, sigh, it makes life easier for me than many
I'm also in "Moderate" severity, I can go a short walk once a day etc unlike many poor sods here who're house/bed bound
I'm on testosterone injections which has put a lot of the pep back in me...dunno about "Roid Rage" but I sure wanna do some circumcision with my teeth on on the gits who've been screwing us over with their psychobabble etc, lol :p

always had zero tolerance for scum, had enough to do with 'em all my life, just cause they have an MD, PHd and a tie makes 'em no damn different than the pinhead inbred scum who use knives or drugs or whatever.
 

Nielk

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NIelk
well, part of itis since I live with my Mum, I aused ot look after ger, now we look after each other, sigh, it makes life easier for me than many
I'm also in "Moderate" severity, I can go a short walk once a day etc unlike many poor sods here who're house/bed bound
I'm on testosterone injections which has put a lot of the pep back in me...dunno about "Roid Rage" but I sure wanna do some circumcision with my teeth on on the gits who've been screwing us over with their psychobbable etc, lol :p

always had zero tolerance for scum, had enough to do with 'em all my life, just cause they have an MD, PHd and a tie makes 'em no damn different than the pinhead inbred scum who use knives or drugs or whatever.
First of all, i love you Scottish way of talking.
I also love your no nonsense approach.
I'm glad the testosterone injections are helping you.

I also have family around me but not all are supportive or understanding of what I'm going through.
I am too timid to stand up for myself and I don't want to cause any friction in the family since
that would put an even larger strain on me. (emotionally)

It's much healthier to be like you and just say it like it is.
I'm proud of you.
 

SilverbladeTE

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doh
sorry for typos, sigh. I always talked/thought faster than I typed, but it's ridiculous now with this damn illness, often can't even see/understand/know it's a typo, grrr!!!!!!!!!!!!!!!!!!!!!!!!!

Well, if you could hear my, you may not be able to understand me since our accent is so thick, hehe ;) so best reading me I think :p
thought it was funny they had do subtitles for "Train Spotting" and "Taggart", hell even folk in the UK can't understand us at times, lol.
We sound like demented gerbils on speed and acid ;)

yeah I can appreciate that, sigh, when yer bad off with ME, just surviving's hard enough, stress form family, ugh, hell no way! :(
took my folsk years to accept this, dad doesn't, but dad is...well *rolls eyes*

alas one problem with speaking your mind is...it tends to upset folk...so while I'm actually a nice guy, it's...wlel I don't like being mean or unpleasant, but sometimes you have to tell folk to "F' OFF!" or jsut "grow the hell up and THINK!!", at some point, sigh.
"S**t or get off the pot" as they used ot say.
I'm running out of time, folk in my neighbourhood have short lifespans anway, oh joys...and that's without ME...and I'm sick of this FOUL disease, so, cut ot the chase, ya know? :)

Proud...I've not achieved much in life, I'm no angel so I don't think I deserve that praise, but thank you :)
 

Daffodil

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my uncle has declared that because stress worsens my condition, that is proof that it is psychological.
 

lucy

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It is the same like saying "If you sleep with your shoes on, you get a headache next morning" (because people who sleep with their shoes on are usually too drunk to take them off). Or, because we see the sun travelling in the sky, it is the proof that the sun rotates around the earth. He must have a degree in logics.
 
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Silverblade, you made me laugh! You are very funny. I love your "accent" too!

Regarding the inability we all seem to have to think of a good comeback to insensitive comments: My husband, who's a psychiatrist, (No, no-- he's a good one, not like those other idiots ...) told me about a phenomenon called a "brain blush". I was once bemoaning the fact that I stood like a total fool when a man made a sexual comment right to my face and in front of my then boyfriend, (the shrink). I was so upset with myself for not saying something witty or cutting to the guy, (yes, my BF did). He explained that when shamed like that, our brains, (even healthy ones), "blush"-- meaning they kind of freeze up, can't think for a moment. I guess it's a variant on "fight or flight"-- like we've been psychologically "attacked" and just freeze as a defense or something.

Anyway, food for thought. It's not our fault. (And I still wish I could think of something to say to those insensitive folks. ... What about "Why would you say something like that?" or "Why do you say that?" or "Are you really as stupid as you sound?" ...... :)
 

Nielk

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Silverblade,

PHP:
folk in my neighbourhood have short lifespans anway,
Is that really true? Why do you think that is?

Maybe you should move away, if that's a possibility.

Nielk:In bed:
 

Nielk

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Silverblade, you made me laugh! You are very funny. I love your "accent" too!

Regarding the inability we all seem to have to think of a good comeback to insensitive comments: My husband, who's a psychiatrist, (No, no-- he's a good one, not like those other idiots ...) told me about a phenomenon called a "brain blush". I was once bemoaning the fact that I stood like a total fool when a man made a sexual comment right to my face and in front of my then boyfriend, (the shrink). I was so upset with myself for not saying something witty or cutting to the guy, (yes, my BF did). He explained that when shamed like that, our brains, (even healthy ones), "blush"-- meaning they kind of freeze up, can't think for a moment. I guess it's a variant on "fight or flight"-- like we've been psychologically "attacked" and just freeze as a defense or something.

Anyway, food for thought. It's not our fault. (And I still wish I could think of something to say to those insensitive folks. ... What about "Why would you say something like that?" or "Why do you say that?" or "Are you really as stupid as you sound?" ...... :)
I like the last option best!
 
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What really bothers me is that a lot of people that have a functioning body and 90% more energy than we have, are actually chronically lazy or complaining about minimal efforts. I know a person that works 6 hours in a pet shop and he doesn't stop complaining how hard his work is, how tired he is in the evening and how he doesn't have enough energy to do anything except work, eat and sleep. If I had his body and energy I would build an house and run a marathon daily (kinda)
But you wouldn't.

If you had his body, you'd then be him, as he is now. Meaning you'd be doing exactly as he is, now.
 

Nielk

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But you wouldn't.

If you had his body, you'd then be him, as he is now. Meaning you'd be doing exactly as he is, now.
Not necessarily. Just because you have his body you wouldn't have his mind and drive to do things.
 

Nielk

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Your mind is a part of your body, just like every other part.
This is bordering on philosophy but there is such a thing as self whether you call it a soul or spirit that is not attached to the
physical body. We are not just robots. I would think that if I were to be able to slip into someone else's body, I would still
be me and my spirit and make the decisions that i make as "me".

Do you think that anyone who would have your body would intrinsically be "you" with your character, morals, way of thinking
and feeling. Are we just a product of the parts that make up our physical body with no free choice as to how to act?
 

Esther12

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