Re:Cognitive problems -- venting!

[Guest guest]

Hi K2, maybe if you show your boyfriend some of these overload emails he will

get it! It is so hard to explain sometimes...especially when entirely the wrong

word pops out of our mouths - good for a laugh sometimes anyway:-) Aylwin

[Guest guest]

I was trying to explain what CFS is to a family friend yesterday when my

brain literally quit. She just looked at me like I was an idiot. " And it

also causes cognitive problems like this, my brain shuts off and I cant find

words or describe things. " That's what I eventually got out of my mouth in

terms of cognitive issues. Isn't it frustrating! I do the Sunday New York

Times Crossword for Crissakes, and I cant even intelligently tell someone

about my disease when I am having a relapse. And basically that is when I

need to tell people about it, because that is when people need to understand

it and I have an opportunity to educate.

English

[Guest guest]

I understand completely. I play scrabble, scrabble blast and any kind of

word games and do extremely well but when they come to getting them out my

mouth

forget it I sound like an idiot. I land up playing charades. I don't get as

angry and frustrated as much anymore I try to make a joke out of it instead

of getting anxious. What I do hate is someone speaking for me like I am a

mentally deficient.

Maybe if they see that you are having a hard time it will give them more

understanding then if you were articulate.

I do think having cognitive problems is very hard to cope with and how

others perceive us and how we feel about ourselves.

It is a hard one to cope with and I sympathize.

Cat

[Guest guest]

At least you managed to get an explanation out! When I get that idiot

look I usually end up even more incoherant. I also get driven mad by

folk who take great joy in saying 'you mean so-and-so' - yes,

alright, I have CFS sometimes I associate the wrong word with

something, do they have to be so smug in correcting me!?

But the very worst was the family friend who told me he would love to

have insomnia because of all the extra things he could get done at

night!!!! Words failed me... and then I realised there was no point

in explaining as someone that insensitive wouldn't be interested

anyway.

Sometimes you just have to vent!

;-)

>

> I was trying to explain what CFS is to a family friend yesterday

when my

> brain literally quit. She just looked at me like I was an

idiot. " And it

> also causes cognitive problems like this, my brain shuts off and I

cant find

> words or describe things. " That's what I eventually got out of my

mouth in

> terms of cognitive issues. Isn't it frustrating! I do the Sunday

New York

> Times Crossword for Crissakes, and I cant even intelligently tell

someone

> about my disease when I am having a relapse. And basically that is

when I

> need to tell people about it, because that is when people need to

understand

> it and I have an opportunity to educate.

> English

>

[Guest guest]

Is scrabble blast still on!!! OMG I love that game but the lag was so bad

has it gotten any better? Ok sorry, I know, way off topic!

I have started just being honest with people when it happens. I also tried

explaining that it is like when you haven't eaten in a while. Most people

can relate to that.

English

Re:Cognitive problems -- venting!

I understand completely. I play scrabble, scrabble blast and any kind of

word games and do extremely well but when they come to getting them out my

mouth

forget it I sound like an idiot. I land up playing charades. I don't get

as

angry and frustrated as much anymore I try to make a joke out of it

instead

of getting anxious. What I do hate is someone speaking for me like I am a

mentally deficient.

[Guest guest]

Or how about their " helpful " suggestions like:

just go lie down for awhile

you need to exercise more

think more positively and you'll feel better

ARGGGGH!

English

Re:Cognitive problems -- venting!

At least you managed to get an explanation out! When I get that idiot

look I usually end up even more incoherant. I also get driven mad by

folk who take great joy in saying 'you mean so-and-so' - yes,

alright, I have CFS sometimes I associate the wrong word with

something, do they have to be so smug in correcting me!?

[Guest guest]

I know what you mean Sara!!!

I also the same questions over again. When the person says

You just asked me that!!!! I say " What did you answer??? "

:-) :-)

mary

>

> >

> > I was trying to explain what CFS is to a family friend yesterday

> when my

> > brain literally quit. She just looked at me like I was an

> idiot. " And it

> > also causes cognitive problems like this, my brain shuts off and

I

> cant find

> > words or describe things. " That's what I eventually got out of

my

> mouth in

> > terms of cognitive issues. Isn't it frustrating! I do the Sunday

> New York

> > Times Crossword for Crissakes, and I cant even intelligently tell

> someone

> > about my disease when I am having a relapse. And basically that

is

> when I

> > need to tell people about it, because that is when people need to

> understand

> > it and I have an opportunity to educate.

> > English

> >

>

[Guest guest]

I use word games and other games to keep the brain working and I got Word

Blast from AOL games. I can play online or off.

I usually ask folks it they ever drank to much and woke up with the worst

hangover ever? Then I tell them to add the flu to it.

They usually understand that.

Great fun not

Sleepy Cat

[Guest guest]

My children also are constantly irritated that I don't end my sentences! I

don't even notice!

English

Re:Cognitive problems -- venting!

I know what you mean Sara!!!

I also the same questions over again. When the person says

You just asked me that!!!! I say " What did you answer??? "

:-) :-)

mary

[Guest guest]

lol...I like that...but do you think I will be able to remember the

come-back

when I need to? My friends use to get perturbed with me when I couldn't

remember

conversations and I use to ask them to write it down for me or to email me

so I will

have conversations recorded to refer back to. Now, they've gotten use to it

and just laugh

it off, teasing that they are older then me, but I am the one with the foggy

memory.

My mother, who is exhibiting signs of dementia even gets frustrated with me

and tries

even harder to jog my memory about a conversation or tells me that " you

remember

so-and-so.... " , then proceeds to get angry with me when I truly do not

recall.

It's a real circus here dealing with my own loss of cognitive skills, Mom

who is

not only in the early stages of dementia, but she is also very agitated and

high strung...

AND I am a single mom of five kids who has been out of work for 6 months.

You can imagine the financial stresses that adds to everything. I'm in the

process of filing

for SSI, but just filling out the paperwork (or the thought of it) blows my

mind and I find

myself drifting off into la-la-land and then putting everything off until

the next day...the next

week, etc. Normally, I would be freaking out at the thought of losing my

house and having to

move, but I'm so brain foggy and exhausted that I have become just apathetic

to everything.

in Maine

[Guest guest]

My Husband and my grown daughters are beyond any doubt the ones that

truely love and accept me as I am. With that said, I found myself

feeling like their corrections were a way of convincing me I was

crazy until I realised that they went the other way suddenly and

would say nothing, just look at each other. I made the decision that

they were not trying to make me think I was crazy, but this illness,

lack of sleep etc has taken alot of my brain function...so now we all

just laugh! It seems to work alot better that way. I don't

appologise for what this illness has done to me, after all ....I did

not want this but I must go on with a healthy attitude and most of

all, keep those I love and care about close at all times. There have

already been times that like.. husband walked all the way accross the

house and upstairs to ask me something but when He got to me he had

forgotten what it was he wanted to ask me. The look on his face was

one of udder shock! It's like my brain skipped he said. I said how

would you like to live with that all the time? I think he has a

better understanding. I think allowing your children regardless of

age to belittle or irritate you is inapropriate and doesn't show you

the respect you deserve. I wouldn't let it fly without them feeling

they had hit a brick wall first! lol

God Bless you guys! It's hard being us sometimes!

/Dutchie

> My children also are constantly irritated that I don't end my

sentences! I

> don't even notice!

>

> English

[Guest guest]

Hi :

As you can tell I can't type sometimes either.

Cooler day here today 40's yesterday was

mid 60's here in Norfolk,VA

Where are you located?? How old are your

children?? I have a tween!!! As soon as

he gets home it's whine/ whine!!! UGH.

I'm getting sent to the Allergy clinic now.

do you have food or chemical sensitivities???

mary

--- sarah wrote:

> My children also are constantly irritated that I

> don't end my sentences! I

> don't even notice!

>

> English

[Guest guest]

I am a member of pogo, it gives me a variety of games to play and I really enjoy

that.

Great description, I would add being beaten with a 2x4 to it as well.

Re:Cognitive problems -- venting!

I use word games and other games to keep the brain working and I got Word

Blast from AOL games. I can play online or off.

I usually ask folks it they ever drank to much and woke up with the worst

hangover ever? Then I tell them to add the flu to it.

They usually understand that.

[Guest guest]

Hi ,

I am in Atlanta GA

It was in the 60's here today

I have a 16 yr old Boy and and 18 yr old Girl

Watch out it goes from whining to bitching LOL!

Yes, I am on a gluten free diet as I am allergic to wheat. I have really

found that eliminating wheat has helped my stomach problems.

I hope all goes well with your Allergy visit.

English

[Guest guest]

I am glad we are discussing this as I have been having cognitive problems up the

wazoo! For me it often goes beyond " brain fog " (though that's also present. when

I was working, I thought it was me and why can't I get my act together etc) for

me - I am forgetting like there's no tommorrow. my mother even said it's like

knowing a person with alzheimer's at times. it's something i've tried to keep

hidden from pretty much everyone that I know (except my mother) because part of

me just feels embarassed or feels like somehow I will be judged...

Watching TV makes it worse. While I do need to rest, I find working on the

computer and making little projects for myself helps my brain.

[Guest guest]

Five children? What on earth ever possessed you to have that many kids?

No, actually I wish I had come from a large family as I can count less

than both hands the number of my family still alive. It does sound that

you have more than your hands full with kids and mom and your own self.

Perhaps someone could help you fill out the paperwork. It does take a

long time to go through the SS process so better not to put it off too

long. I know that you know that, but sometimes you just have to enlist

help when you need it. Good luck and hang in there.

Sandrea

[Guest guest]

> AND I am a single mom of five kids who has been out of work for 6

months.

> You can imagine the financial stresses that adds to everything. I'm

in the

> process of filing

> for SSI, but just filling out the paperwork (or the thought of it)

blows my

> mind and I find

> myself drifting off into la-la-land and then putting everything off

until

> the next day...the next

> week, etc.

> in Maine

**************Dear ,

I feel for you. I've had that kind of terrible loss of mental acuity

too.

I don't know how the system works in Maine, being from Ontario Canada,

but I have a friend (again, Ontario)here who just got hers finally.

She was actually given a case worker who helped her fill in the

paperwork. She had to be diagnosed by a doctor, and then get a, what

do you call it?, a...recommendation? from the doctor to get a

caseworker. This is for disability and for welfare. I forget, but I

think the welfare kicked in long before the disability.

Can you get a caseworker to help you to do the paperwork?

Debbie mcsbarrie

[Guest guest]

Don't feel bad all! One week my family got the giggles as I rented the same

movie from blockbuster for the third time in a row. The sad thing is that I

honestly couldn't even remember watching it. I have learned to laugh about this

now but honestly at the time, I was heartbroken and petrified trying to figure

out what was wrong with me. I had a hemorrhage to the brain as a child and

instantly thought, " oh no, it's acting up again, " only to find out that I had

CFS and that this was common. The worst thing that I had happen was one day

while heading to work, I called my boyfriend to ask him how to get there when I

had taken that route every day for the past two years. It is frustrating at

times but I have come to the point that we are just so fatigued at times that we

just can't concentrate well. The worst of these cognitive problems were in the

first two years for me. I have done much better since.

Good Luck and know that you are not alone!

Tina

[Guest guest]

Hi and and everyone, well my kids are 23 and 25 and they do

eventually grow up! Ok, occasionally they try to whine, but I don't let them;-)!

Actually I am so relieved that they are grown up (they survived MY disease)...I

got ill when they were 3 and 5 and it was very hard - BTW , you deserve ten

medals for dealing with five!!!!! I hope that some or all of them are old enough

to manage. We love 'em but it can be a lot (understatement) when you're ill long

term.

Actually, my son got ME too, badly, when he was 10, and was completely out of

school, heck I had to carry him to the bathroom! It broke my heart at the time

but fortunately he did recover (as kids do more often than adults) for the most

part by 13-14. Funny thing is, he doesn't (or doesn't want to) remember this at

all, and has the attitude towards ME that we've all come to know and love so

well...( he got the attitude from his dad) But now he does construction and has

a full life, he's in fantastic shape and I'm just so grateful that he got over

it.

OK now I'm gonna whine. I am dealing with " the attitude " from every direction

these days, and getting a little desparate about it. I do not have good medical

support, at least I got a rheumie refer for my knees and I found one " in the

know " to go to, now I just have to wait months to see him. But my GP's (this is

the new, better one hah!) just so completely disinterested. He's been fine about

signing forms for a parking permit and suchlike, but treatment options?

Fahgeddaboudit.

If someone came into my office and said " I have such-and such disease and nine

months ago I could walk fine (though not far hehe) and then overnight my knees

collapsed, my BP crashed, I couldn't drive, walk, I wasn't just hung over-like

or brainfogged, I was DRUNK (ie like as inebriated as someone who is throw-up

drunk) from brain dysfunction ( " sunlover " 's right, it is more than brain fog),

lost the ability to drive and various other normal functions, overnight, mind

you, and now use a scooter, knee braces and a cane to move at all - well, if I

were that doctor I would be very alarmed. And I am, NOT a dramatist who goes for

every little thing, in fact I avoid it like the plague. And basically the

reaction is yeah whatever. JUST because my primary diagnosis is ME.

I have been severely impaired in the past for long periods and only

semifunctional at the best of times (maybe 55% level?), but this whallop has

taken me to a whole new level. I even wonder sometimes if I might not have had a

stroke, but who would ever know? The only comfort is in knowing that relapses

this severe and worse do happen, so it probably is

" just " the ME.

Whew - Ok that was a rant! I won't get started on the friends and public

perception aspect of 'the attitude " ...Let's just say that this group is the

antidote for all that!

I will say that I have an excellent alternative person (who I've been working

with for almost 3 years) who has been as helpful as possible, and she helped me

clear most of my severe (even anaphylactic) food and scent etc.etc.allergies.

But I think even she was shocked at this, and we seem to have reached a point

where all the accupuncture and supplements (and she is really expert and current

about all that) can only do so much. Mostly it seems that only the (weekly) B12

injections are having a wee positive effect

BTW Miriam, a friend of mine calls it " energy calories " , kinda the same idea, I

guess we're all on a diet:-)

Hope everyone had something cool in their day today, Aylwin

[Guest guest]

Isn't it odd - I also try to keep my cognitive problems hidden,

pretending to remember conversations etc, yet it is a part of the

illness, but when my brain gets called into question I get ashamed and

afraid of being judged.

I've also begun to wonder if watching TV makes it worse, as I'm

increasingly finding it hard to remember what happened in TV shows and

often lose track in the middle (Mind you, by GP suggests this may be

down to decreasing quality in TV... everyone's a critic!). I have

similar problems with books, but not so badly, and at least I don't

lose track when I'm actually reading. I find that little cognitive

projects & puzzles do help as long as I remember to rest too. But I'm

seriously thinking that limiting TV watching might be a good idea,

which is an alarming thought for a SF & F addict! Does anybody have any

other thoughts on this?

Thanks,

Best to all, Jax

>

> I am glad we are discussing this as I have been having cognitive

problems up the wazoo! For me it often goes beyond " brain fog " (though

that's also present. when I was working, I thought it was me and why

can't I get my act together etc) for me - I am forgetting like there's

no tommorrow. my mother even said it's like knowing a person with

alzheimer's at times. it's something i've tried to keep hidden from

pretty much everyone that I know (except my mother) because part of me

just feels embarassed or feels like somehow I will be judged...

>

> Watching TV makes it worse. While I do need to rest, I find

working on the computer and making little projects for myself helps my

brain.

>

[Guest guest]

Thank you for the suggestion. I will definitely look into that this week.

in Maine

_____

**************Dear ,

I feel for you. I've had that kind of terrible loss of mental acuity

too.

I don't know how the system works in Maine, being from Ontario Canada,

but I have a friend (again, Ontario)here who just got hers finally.

She was actually given a case worker who helped her fill in the

paperwork. She had to be diagnosed by a doctor, and then get a, what

do you call it?, a...recommendation? from the doctor to get a

caseworker. This is for disability and for welfare. I forget, but I

think the welfare kicked in long before the disability.

Can you get a caseworker to help you to do the paperwork?

[Guest guest]

LOL...I was married to a farmer...what else was there to do out in the

middle of nowhere

once all the " chores " were done??? ;-)

....and where is he? after we moved to Maine, he got " fixed " and left after

his recovery three

weeks later, and within two months, found his " soul-mate " that he is still

with, three years later.

Because of this, I do have sympathy from many in the community who might

normally not

" buy in " to the evidence of CFS...most people look at me, knowing my

circumstances, and say

" Well it's no wonder that you would have something like this after the

stress you've endured! "

Nice to have the moral support...but physical help for my house/property and

financial help would

be much more appreciated.

But, after this past week...I am thankful just to be here with my children,

no matter if we end up having

to sell the house and move into an apartment in order to get assistance from

the Housing Authority.

Yesterday, I attended the funeral of an old friend from high school. She

was 43 years old, in perfect health

(other than this quick strep infection that she came down with last week),

into holistic health and vitamins, etc.

She has a lovely husband and two children ages 5 and 7. Strep infection!

How freaky is that?

So, I guess today, I am going to just have some R & R...relax, just do what

I am able, and enjoy having

life left in me to enjoy these wonderful children.

Cheers,

[Guest guest]

> Don't feel bad all! One week my family got the giggles as I rented

the same movie from blockbuster for the third time in a row. The sad

thing is that I honestly couldn't even remember watching it.

**********Although I'm improving, I still have huge memory gaps from

my brain fog of 2004, so I totally empathise with this video episode

of yours. Many, many times my family will say " We've seen that, Mom "

and sometimes I remember bits of it and sometimes the video is an

entirely new experience for me.

I have learned to laugh about this now but honestly at the time, I was

heartbroken and petrified trying to figure out what was wrong with me.

********Yes, it was terrifying at first to realize how out of it I

was. My family thought I was dying. We wondered if it were

Altzeimers. And it's scary to suddenly not know family members' names!

I had a hemorrhage to the brain as a child and instantly thought, "

oh no, it's acting up again, "

*******Tina, that's even an added fear for you to be carrying!

only to find out that I had CFS and that this was common.

The worst thing that I had happen was one day while heading to work, I

called my boyfriend to ask him how to get there when I had taken that

route every day for the past two years.

*********Thank you for mentioning this too. I grew up in this city

and near this neighbourhood is where I went to high school and yet,

There are days when I feel momentarily lost. In 2004, I didn't drive

unless I absolutely had to. Just too addled to be safe!

The worst of these cognitive problems were in the first two years for

me. I have done much better since.

>

> Good Luck and know that you are not alone!

> Tina

***********I think we start to figure out, with the help of those

around us, of these new friends online, perhaps with the help of a

doctor or naturopath, and through trial and error, what works and what

doesn't work, and so our lives do improve.

Debbie mcsbarrie

[Guest guest]

Well my kids just can not believe my memory and how bad it is getting-they seem

to want to ignore my being sick-though I have had CFS for 24 yrs now!!! Guess

they are used to me and I do overdo it all the time-think I would learn.

As for reading-it is great because I can take a book out from the library and

be almost to the end and think-maybe I have read this before but I can not

remember the ending anyway so just read it again. sigh TV is not too bad

though I usually have to ask my son about this bit of it and that bit and he

explains it (loves that) lol Wish I had an answer to it all. My understanding

wonderful doctor has left (travelling for a year) and the new doctor, well,

hmmmmmmm. I said to him on Friday I wish that you could get CFS for just one

day and then you might understand. He was horrified and said no I see how it

affects people and it is terrible-I said but you do NOT really understand.

Seriously though, can you truly understand if you do not have it. I don't think

so but yu can have empathy. ENough from me

Take care

Nerida

[Guest guest]

Huggies Nerida [:-/]