Re:She just doesn't get it

[Guest guest]

Hi Marcia,

I can really sympathize with your situation. I've had CFS/FM for 9 months

since coming down with the flu and my house has gotten noticably worse. With

three homeschooled children, you can imagine how hard it is to keep up with

them! My MIL offered to send her cleaning lady to me twice a month as a gift,

until I " get back on my feet " . I had mixed feelings about it- I was embarrassed

and a bit offended, but I was touched that she would offer. I tried to not judge

her motives, and since I could use the help, I agreed. I'm glad I did because

the cleaning lady has been such a blessing! She can do more in three hours than

I can accomplish in weeks- she even does dishes and laundry!

You're probably right that your friend can't possibly understand where you're

coming from, but I wouldn't hold it against her. If you feel comfortable enough,

maybe you can calmly tell her that her statements hurt you and explain where you

are coming from. If she is a close friend it is worth it to keep short accounts,

as you would with a marriage so things don't build up. If not, I would just let

it roll off my back. People are constantly shoving " helpful " articles in my

face, or giving me unsolicited advice, saying, " if only you'd _____ you would

probably feel better. " I know they mean well, so I just take the paper and say

" thanks, I'll take a look " . And then never get back to them. To the advice I

say, " Hmm... that's an idea- thanks. " or " Well, thanks, but I'm doing what I

find works for me. "

Well, I'm not sure if that helps any, but it felt good to put it in print!

I'm glad to have this group for support- it's great!

: ) Marilyn

[Guest guest]

I could really relate to the first post of Marcia's and it's nice to

read this one; to hear about someone who does have people who

understand and help out. I thank God I've not been as disabledas

some, but it HAS been about all Icould handle, and at times I felt it

was too much.

I remember prior to being properly diagnosed being treated by someone

who came here as if I were nuts or defective. I was not able to

explain how the place had 'gotten this way.'

I know now that I would totally just tell someone off if they made an

ignorant statement about how this place is. I do what I can, and God

knows I would do things a whole lot better if I could. I think I'd

try to stay calm, try to explain simply to the person just how ill I

am, and then ask them how they could possibly be so rude as to speak

this way to someone who is so ill.

(Actually the reason is we do not LOOK as bad as we feel alot of the

time; I know I have become pretty adept at putting on makeup when I

go out.)

I cannot fathom, however, people who say such rude things; that they

make such assumptions about others and then are so direct. My manners

are better than that; whenI've been invited to someone's home and it

is not clean, I do not comment on it. I would never think of doing so!

Jane, the one with the hound

[Guest guest]

I agree with you totally....I have been in some people's houses where there is

so much stuff piled that there was just a path through the middle of the room to

get through.... but I would never in my life make any kind of comment about

it... you never know the reasoning behind it... whether they just never learned

the cleaning skills... or if they are unable to do the cleaning...

Unfortunatly I am a perfectionish at heart.. which is a really bad thing with

the fibro... because I HAVE to have my house clean or else it drives me nuts....

my routine anymore is about three days a week I go into a spit fire mode and

clean... but have to take a couple of days inbetween to recover.... I know this

is not good... but that is just the way it happens... a dirty house drives me

nuts. LOL

Right now with the colder weather coming in... I am having trouble with spider

webs... there seems to be an abundance of spiders this year. My oldest went to

the store the other day and bought me this dusting thing with a long handle...

and they went around all the corners and stuff for me.... Wow that was wonderful

to get to just sit and watch... hehehe

I find myself getting more frustrated about my situation as time goes on. I

struggle to walk and actually find myself exhausted just from walking through

the house... but am determined NOT to use the wheel chair.... but it scares the

heck out of me that that time is coming. Some people tell me that I should just

give up and use it.... but to me that is surrending to the disease.... and I am

not ready to do that yet. Just call me bull-headed I guess LOL

Vickie

ferynnghee wrote:

I could really relate to the first post of Marcia's and it's nice to

read this one; to hear about someone who does have people who

understand and help out. I thank God I've not been as disabledas

some, but it HAS been about all Icould handle, and at times I felt it

was too much.

I remember prior to being properly diagnosed being treated by someone

who came here as if I were nuts or defective. I was not able to

explain how the place had 'gotten this way.'

[Guest guest]

I have heard that perfectionists are more prone to getting CFS. I don't know if

this is true or not, but it seems that maybe the perfectionists notice it more.

If you are naturally sloppy, would you notice if you suddenly didn't have the

energy to clean?

vickie englebright wrote:

I agree with you totally....I have been in some people's houses where

there is so much stuff piled that there was just a path through the middle of

the room to get through.... but I would never in my life make any kind of

comment about it... you never know the reasoning behind it... whether they just

never learned the cleaning skills... or if they are unable to do the cleaning...

[Guest guest]

I think your post was meant for someone else. I have ME/CFS. I know the

difference between fatigue and what I have. I don't suffer from fatigue. I

suffer from ME. It's a neurological/autoimmune condition that causes my muscles

to not get " fed " from the thalamus properly as well as the nervous system to be

quite hyper-sensitive. Not to mention the cognitive impairment which causes me

to forget what I did two minutes ago.

I WISH I had just fatigue. That would be heavenly compared to the muscle

pain, brain fog and hyper-sensitive nervous system. Of course I am not even

mentioning the digestive problems, muscle weakness and sleep problems.

[Guest guest]

I enjoyed reading the posts on this subject. FWIW I think most people

think first in terms of " stereotypes " . If your house/apt. is dirty

and/or cluttered, then many make the determination you are some sort of

slob and if it is a very bad day and someone is over who doesn't know

you well then they might even add any numbers of assessments to the

" slob " determination.

I have had CFIDS with Fibro for....oh I don't know if that was healthy

for me to figure out!!! It actually started in 1989..and was diagnosed

in 1992.

People without significant health problems in particular often (to me)

appear to have an inability to comprehend chronic illness of any kind

will change behaviours. It might not change us inside but it sure

changes our functioning! Those types do not " get it " at all unless it

is explained and even then often they can only attempt to

understand...but that is a start.

I have found successful ways to manage but it took a long time of

learning to achieve it.

Well I am new and pleasantly surprised with what I have read so far. I

look forward to learning and hopefully sharing in a helpful way.

Marie

[Guest guest]

, just recently (in a fibro group that was open to all chronic

illnesses) a debate erupted over just this topic. Long story short it

turned out that in the U.K. CFIDS/CFS is considered separate entity from

M.E.

I'm in the U.S., diagnosed with CFIDS with Fibro. Yet your symptoms are

exactly what I myself experience with the addition that due to all the

symptoms I also have fatigue...but this is very interesting to me

because now I am wondering if in the U.S. we have labeled the symptom

expressed as fatigue incorrectly when it so goes beyond " fatigue " ....

If possible could I get a site or two from you to visit? Sites that you

find reputable.

Thanks very much

Marie in IL

>

> I think your post was meant for someone else. I have ME/CFS. I know

the difference between fatigue and what I have. I don't suffer from

fatigue. I suffer from ME. It's a neurological/autoimmune condition that

causes my muscles to not get " fed " from the thalamus properly as well as

the nervous system to be quite hyper-sensitive.

[Guest guest]

I have found that most don't even believe I am sick. You don't see me when I

am laid up in misery but now and then I have a day when I may feel a little

better . On goes the makeup and I can pass for normal.

For the most part all my (ex) friends gave up on me luckily I was the

youngest of two brothers 5 and 7 years older so I learned to amuse myself so I

don't mind being alone.

My Der brain just kicked in and I have forgotten why I was answering you,

no wait a minute, its still in bed. I am going to have to talk with that brain

of mine it spends to much time on breaks.

Ah yes,

Cat

The Center for Disease Control (CDC) has recently stated,

that:

CFS

*....there's evidence that the patients with this illness

experience a level of disability that's equal to that of

patients with late-stage AIDS, patients undergoing

chemotherapy, patients with multiple sclerosis....*

[Guest guest]

Marie,

You are so right - it does go so far beyond fatigue! Sometimes I hardly think

fatigue doesn't even fit the description.

Diane in Ks

Because He lives, I can face

tomorrow

[Guest guest]

Diane,

I agree with you. When our " syndrome " (Chronic

Fatigue Syndrome) was given a name that included

" Fatigue " it " succeeded " in giving the overwhelming

message that it is our prime affliction. Yet it is a

" compendium of symptoms " but few are aware of that

fact. And CFS can affect the bearer to different

levels as well, cases vary in severity. My immune

system is damaged from over seven years of constant

bacterial/viral infections.

Diane, I think the " fatigue " results from the ongoing

ever-shifting symptoms. I wonder if anyone can tell

us what the medical term would be for when someone is

constantly coping with symptoms and the exhaustion

that occurs..as a result? There must be medical

terms? Could someone supply medical terms for when

exhaustion occurs as a result of symptoms?

Marie IL

--- Diane Kauffman wrote:

> Marie,

> You are so right - it does go so far beyond fatigue!

> Sometimes I hardly think fatigue doesn't even fit

> the description.

> Diane in Ks

> Because He lives, I can face

> tomorrow

[Guest guest]

I am grateful already that this group exists. Already

in just two days the information is helping me. Thank

you for what is posted at the end of your email...I

share alot of your experience.

I'm new and too certain yet of how long or of what

nature our replies should be..otherwise my posting

would be LONG.

Thank you

Marie in IL

--- ShyCat2@... wrote:

> I have found that most don't even believe I am

> sick. You don't see me when I

> am laid up in misery but now and then I have a day

> when I may feel a little

> better .

[Guest guest]

I think EXHAUSTION would be a better description. CHRONIC EXHAUSTION!!!

Barbie

[Guest guest]

Marie,

yesterday my dr offered me something to help with the chronic fatigue,however, I

didn't accept because I was afraid something to 'pep me up' would further hinder

my sleep. I am fortunate that I have found a combo of 'stuff' that gives me a

good night's rest. And, all us with fibro know we feel so much worse if we are

sleep deprived.

Diane in Ks

Because He lives, I can face

tomorrow

[Guest guest]

Amen Jane! I'm with ya...........I do the best I can, and if someone doesn't

like it, tough! They can always offer to help out! But I know it is difficult,

and hurtful, but I like you, was raised differently. It took me years to get to

this conscious decision as I look at those people, even as caring as they are,

and just consider them ignorant of the devastation this disease brings, on so

many levels. Once people learn more about it, they will be more understanding

and compassionate. I will await that day, and pray it comes soon.

I know perfectly healthy people who live like pigs, but I love the person all

the same.I would never hurt their feelings that way.

Just hang in there, and be at peace with yourself. Otherwise, the stress just

makes it worse.

Good Luck,

STL Jane

ferynnghee wrote: I could

really relate to the first post of Marcia's and it's nice to

read this one; to hear about someone who does have people who

understand and help out. I thank God I've not been as disabledas

some, but it HAS been about all Icould handle, and at times I felt it

was too much.

[Guest guest]

Hi,

Could you please tell me what combination you are using to help. I have fibro

but I also have CFS/ME and sleep is so elusive. Would love any suggestions.

Regards

nerida

Diane Kauffman wrote:

Marie,

yesterday my dr offered me something to help with the chronic fatigue,however, I

didn't accept because I was afraid something to 'pep me up' would further hinder

my sleep. I am fortunate that I have found a combo of 'stuff' that gives me a

good night's rest. And, all us with fibro know we feel so much worse if we are

sleep deprived.

Diane in Ks

Because He lives, I can face

tomorrow

[Guest guest]

Hi Nerida,

I've been put on Trazodone and Risperdol just before bedtime, and they work

tremendously well for me.

Rhonda

Re:She just doesn't get it

Hi,

Could you please tell me what combination you are using to help. I have fibro

but I also have CFS/ME and sleep is so elusive. Would love any suggestions.

Regards

nerida

[Guest guest]

Hi Diane

I am so drug avoidant it is not funny. Had some

distasteful experiences along the way. What is the

combo though?? I have been speculating about

experimenting with how much of my nighttime difficulty

is the CFIDS with FM and how much my own behaviours

might sneakily be interfering as well...

my doctor offered Ambien over and over and I didn't

trust it....hmmm.

Marie IL

--- Diane Kauffman wrote:

> Marie,

> yesterday my dr offered me something to help with

> the chronic fatigue,however, I didn't accept because

> I was afraid something to 'pep me up' would further

> hinder my sleep. I am fortunate that I have found a

> combo of 'stuff' that gives me a good night's rest.

> And, all us with fibro know we feel so much worse if

> we are sleep deprived.

> Diane in Ks

> Because He lives, I can face

> tomorrow