Re: Emotional fragility

[Guest guest]

Your not alone. Hugs!

wrote: Do some of you with CFS/ME/FBS

find yourselves emotionally fragile from

time to time. Do you find yourself just worn down and not having the

energy to cope with difficult people or situations that you'd under

normal circumstances would not have trouble handling? Do you feel frail

and vulnerable? Just need to know that I'm not alone.

[Guest guest]

Hi !

You are not alone! Our bodies and brains are so

overwhelmed that it is completely normal to even focus

or concentrate on difficult situations. Life hands us

challenges everyday, yet I try to avoid the difficult

situations/people that I know can. I've learned some

relaxation exercises and some positive self talk

dialogue. One of my doctors that treat patients with

chronic pain says its always good to just sit down and

have a good boo hoo and get it all out of the system:)

--- wrote:

> Do some of you with CFS/ME/FBS find yourselves

> emotionally fragile from

> time to time.

[Guest guest]

Dear , yes this is very common…and part of the disease(s). We have

reduced ability to deal with stress due to lack of stress hormone cortisol,

and emotional lability (the weepies, easily upset) from how the brain is

being affected. My point is that these are symptoms with a strong

physical/biochemical component. As to feeling frail and vulnerable…we are.

So no, you aren’t going crazy, but just as physical stress can make the

illness worse, so can emotional stress. Please wrap yourself in comfort and

hugs…and rest up until you feel a bit stronger. You are not alone. HUGS,

Aylwin xox

[Guest guest]

,

I have FMS and often feel like I simply cannot make one more decision.

I am a full-time caretaker to my four children, and sometimes I just have to

hand situations to my husband and say, ok, you deal with that. Just tell me

what to do.

I have also found that my symptoms get worse with stress, so I actively avoid

stressful situations. For instance, when I need to confront someone I often get

my husband involved and then emotionally distance myself (it helps that I trust

him to do the right things).

I used to (before FMS) be good in a crisis and I had a high-stress job in which

I moved from crisis to crisis all day and loved it. Now I can't imagine doing

that.

T.

[Guest guest]

absolutely I feel that way sometimes. That's when I realize that I have been

overdoing it. Because we don;t have the same physiological response to STRESS(

even having a good time is STRESSFUL for us and we pay the price the next day or

several days) as healthy people. that is when i DON'T ANSWER THE PHONE and do

anything but bed rest for a day or several days and then I feel better. I feel

overwhelmed quite often due to the fatigue, cognitive problems quite often. I

have found that it also helps to cut back on things I " should " be doing and

wortk on not feeling guilty about it. The isolation is hard ( ihave been a CFIDS

survivor for over 30 years) but withdrawing temporarily from stressful

situations, toxic people and the demands of life seems to help. Diane

[Guest guest]

Hi :

Yes, you could say that all of my nerves are frayed. I've had this

syndrome for years upon years. In that time, my ability to talk on

the phone or deal with people for more than a few minutes at a time

has significantly decreased. Any stressful situation can put me in

bed for the next day or two. I have to limit any kind of social

activity. You're definitely not alone.

I'm working with my diet and some supplements, but I'm not even close

to being normal, but I do feel a little better.

carrie/beake

[Guest guest]

>

> Do some of you with CFS/ME/FBS find yourselves emotionally fragile

from

> time to time. Do you find yourself just worn down and not having the

> energy to cope with difficult people or situations that you'd under

> normal circumstances would not have trouble handling? Do you feel

frail

> and vulnerable? Just need to know that I'm not alone.

>

Hi , I'm relatively new to the CFIS world having only been

diagnosed less than a year ago. I'm so tired, no pun intended, of

feeling broken and unable to cope!!!! You are not alone. I truely

believe the problem is with everyone else. They simply cannot

understand how you feel, and many of them think it's all in your head

because " it's the disease of the day " . I was actually told that by a

former friend. I cope by seeing a counseler who is wonderful and by

sharing my feelings with my always supportive spouse. If you don't

have a counseler or a spouse/close friend you can talk to please find

one. It really helps.

[Guest guest]

One of the things I also remind myself to do is " JUST

BREATHE! " Take a few minutes to take a deep breath

with as much air as your lungs can take, count to ten,

slowly let the breath out through the mouth. I do

this ten times in one sitting, sometimes several times

a day. I learned from a great CBT doctor that its one

of the best things we can do for ourselves. Also, I

have eliminated the word " should " from my vocabulary.

I don't let myself say " I should be able to do this

today " , I substitute with " It will be nice if I get

this done today. " How we speak to ourselves can also

help eliminate stress.

--- beake wrote:

> Hi :

>

> Yes, you could say that all of my nerves are frayed.

> I've had this

> syndrome for years upon years. In that time, my

> ability to talk on

> the phone or deal with people for more than a few

> minutes at a time

> has significantly decreased. Any stressful

> situation can put me in

> bed for the next day or two.

[Guest guest]

One of the things I also remind myself to do is " JUST

BREATHE! " Take a few minutes to take a deep breath

with as much air as your lungs can take, count to ten,

slowly let the breath out through the mouth. I do

this ten times in one sitting, sometimes several times

a day. I learned from a great CBT doctor that its one

of the best things we can do for ourselves. Also, I

have eliminated the word " should " from my vocabulary.

I don't let myself say " I should be able to do this

today " , I substitute with " It will be nice if I get

this done today. " How we speak to ourselves can also

help eliminate stress.

--- beake wrote:

> Hi :

>

> Yes, you could say that all of my nerves are frayed.

> I've had this

> syndrome for years upon years. In that time, my

> ability to talk on

> the phone or deal with people for more than a few

> minutes at a time

> has significantly decreased. Any stressful

> situation can put me in

> bed for the next day or two.

[Guest guest]

You are definitely not alone. I sometimes feel like I'm on a roller coaster.

When I feel good I'm more emotionally stable, happier. But when I'm tired or

really not feeling good I become more sensitive. A sentimental commercial will

make me tear up. It's difficult, but I'm just glad to feel anything. For the

first couple years of being sick I was so tired I was numb to everything. I

hated that numbness.

-Alia

[Guest guest]

Thanks for your kinds words. Very much appreciated

" J. Catchpole " wrote: Dear , yes this is very

common…and part of the disease(s). We have

reduced ability to deal with stress due to lack of stress hormone cortisol,

and emotional lability (the weepies, easily upset) from how the brain is

being affected.

[Guest guest]

I told a relative off for her insensitivity to my condition. After she asked me

how I was and I told her I had a relapse, she totally ingnored what I said and

went on boasting how fit and successful she was. I was always there for her, but

when I needed some TLC, she totally shuns me. I just felt kicked when I was

down. Anyway, that's life.

stephanie wrote: Hi !

You are not alone! Our bodies and brains are so

overwhelmed that it is completely normal to even focus

or concentrate on difficult situations. Life hands us

challenges everyday, yet I try to avoid the difficult

situations/people that I know can.

[Guest guest]

I don't think we'll ever be " normal " again with these conditions. It's been 15

years for me and relapses are sooooo frustrating, aren't they?

Hope Christmas won't be too stressful for you

Best Wishes

beake wrote:

Hi :

Yes, you could say that all of my nerves are frayed. I've had this

syndrome for years upon years. In that time, my ability to talk on

the phone or deal with people for more than a few minutes at a time

has significantly decreased.

[Guest guest]

Thanks so much for your response. It's very uplifting for me to know there are

others who understand exactly what I'm going through

diane lindeman wrote: absolutely I feel that

way sometimes. That's when I realize that I have been overdoing it. Because we

don;t have the same physiological response to STRESS( even having a good time is

STRESSFUL for us and we pay the price the next day or several days) as healthy

people.

[Guest guest]

Thanks darlin for the hug

vickie englebright wrote: Your not alone.

Hugs!

[Guest guest]

,

This is a big problem for me. It has a profound effect on my life. I try to

tell myself That I am strong.

I am hoping that I can derail any thoughts that keep me stuck in being

vulnerable. It is difficult because the emotions are an automatic response.

I hope that you can find an effective way to deal with this.

Does anyone here have something that they do to deal with feeling vulnerable?

Margaret

<_maharg60@..._ (mailto:maharg60@...) > wrote: Do some

of you with CFS/ME/FBS find yourselves emotionally fragile from

time to time. Do you find yourself just worn down and not having the

energy to cope with difficult people or situations that you'd under

normal circumstances would not have trouble handling?

[Guest guest]

Hello everyone,

I'd say this is a really hot topic. I seem to have a total meltdown at

least once every couple of weeks. It comes on a day when I have had several

days of lots of back to back activity with no rest or down time. I can cry

all day on those days and when my husband gets home, I tend to unload it all

on him. Those days make me too want to run away and hide because life just

feels too tough. On days like that when I have no coping skills or

emotional energy for anything I do not answer my phone, even when my

parents call, because I just don't have the energy to sit and listen to

anyone else. I know that I have to have a day or two of rest in between

activity days and when I don't I really pay for it. I am really trying to

do that but it is not always possible. Thank goodness every day is not a

bad day and today the sun is shining and I made it to church so I am

content!!

Take care,

cheryl

[Guest guest]

You are definetly not alone! I get so overwhelmed very easily I just

shut down and can't do anything. I feel " frozen " . I haven't dealt with

even 1/4 of the business I need to attend to regarding my dad's death.

I need to get an attorney, but just can't seem to deal with it. I

couldn't even do the obituary. I find that the smallest things will

trigger a depression and major flare up. I keep waiting for my hsb to

come home and help me with some of this stuff, but he keeps getting

delayed. I leave Tuesday evening for Las Vegas to fly home for

Christmas. I'm hoping he gets here before I leave so I can get my

clothes off the truck that have been on there for over a month. It is

so cold here, I keep having to buy more clothes.

Good news - yesterday I impulsively bought a very expensive bed. It's a

king sized, dual controlled, Temperpedic. It's the kind that vibrates

in zones and the head and feet go up and down, each side separately.

They delivered it today into the garage. It took me 2 hours to clear

out the spot I wanted it in. There is a 5' wall in the middle of the

garage. I have an office area set up on one side and put the bed on the

other to close it in a little and maybe confine some heat. This bed is

sooooo comfortable. I figured we will never have to buy another bed and

I need a good, supportive bed. Hopefully, it will help with my pain.

It's going down to into the 30's and 40's at night and the space heater

doesn't do much. I have a lot of them, but can' turn more than 2 at a

time or the breakers trip. This RV garage is almost 2000 sq. ft. and

very open. There are three doors that open. It's open ended on one side

and the 3rd door opens in the front. It has central A/C, but no heat.

There are 2 neighborhood boys that hung out with my dad and they came

over when they saw I was home. Normally, I don't mind. But today, for

some reason, I was really on edge with trying to pack and move all the

shelves and misc stuff for the bed. They offered to help and I let them

do a little, but I couldn't take much. I finally had to take some Xanax

and closed all the doors when they went outside. I felt guilty, but

this anxiety attack came on so fast and unexpected. Now there is so

much " stuff " in this garage, as big as it is, it's like a maze trying

to get anywhere. I don't function well in chaos. I have a lifetime of

my dad's papers to go through, creditors to deal with, a burned house

to rebuild, a reverse mortgage to pay back, daily mail. The list goes

on. Last week I was out of my pain medicine for 3 days and was totally

shut down. I was in so much pain, I could hardly move or sleep.

Even with all of this going on, I had a hard time functioning before.

But it has been a very tough year.

Love to all, Darlena

Do some of you with

CFS/ME/FBS find yourselves emotionally fragile from

> time to time. Do you find yourself just worn down and not having the

> energy to cope with difficult people or situations that you'd under

> normal circumstances would not have trouble handling? Do you feel

frail

> and vulnerable? Just need to know that I'm not alone.

>

[Guest guest]

Hi Darlena,

I have a tempurpedic bed too that is an electric bed and I really like

it. Mine doesn't have massage but that's fine as massage seems to

really bother me. I have a recliner that has massage and I had to have

that feature deactivated. If it is so cold in that garage, I would

suggest a very warm down comforter if you can get one. I bought one at

LL Bean when I first moved here and I bought the warmest one. I ended

up having to return it as it was too warm. I went down to a lower

warmth level. If you can get an electric blanket that might work too.

My tempurpedic says not to use an electric blanket though I think.

I think I would be overwhelmed with as much as you have to do as well,

and even if I were healthy. Being ill it is even worse. But I think

that you have to give yourself credit for what you are accomplishing and

realize that it really is a lot to handle. Hoping your husband brings

your clothes soon.

Sandrea

[Guest guest]

Hi , Try not to take it personally…I know it hurts when we don’t get

caring acknowledgement from people we have supported…some people just don’t

handle illness well, and the super fit and successful ones especially find

it terrifying! It threatens their sense of control over their own life to

see someone randomly laid low. She wasn’t shunning YOU per se, but the

spectre of illness and disability.That’s part of how I cope, by seeing that

it’s their stuff, not mine. Aylwin xox

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of Graham

Sent: Sunday, December 16, 2007 1:40 AM

To: CFAlliance

Subject: Re: Emotional fragility

I told a relative off for her insensitivity to my condition. After she asked

me how I was and I told her I had a relapse, she totally ingnored what I

said and went on boasting how fit and successful she was. I was always there

for her, but when I needed some TLC, she totally shuns me. I just felt

kicked when I was down. Anyway, that's life.

[Guest guest]

Hi Margaret, I do a couple of things.

First, if I feel overwhelmed I withdraw, retreat, and have a couple of days’

rest and solitude.

Second, reduce sensory stimulation. This means anything that’s too intense,

noise, light, interaction by phone etc.

Third, reduce emotional/negative interactions (like avoiding phone calls

with tiresome or long-winded people, even turn off your phone if you can),

and replace it with something sweet, positive, funny…like a light book or

movie, or some comedy works great! Nothing upsetting though. This will help

you shift your emotional state.

Finally, remember to not take things too personally…people are often

reactive because of their own fears and attitudes about health and illness,

and project them on to you. Sometimes it helps to have a good therapist to

vent with and grieve and process all that has happened…only helpful if the

counselor has some experience with issues of chronic illness and

disability…not someone who thinks you will get well through therapy!

Interacting with groups like this is very helpful, connecting with folks who

do get it, have similar experiences, and can be supportive. You are not

alone though it my feel that way sometimes.

Hugs, Aylwin xox

[Guest guest]

I have that difficulty often, yet in my case it is

with someone whom is also ill with CFS. In addition

to my CFS, I have severe FMS, MPS, RA which feels like

its killing me and the medication helps the pain but

the malaise is god awful. The medication also makes

me ever more likely to catch any type of cold, virus,

infection. Mild chemotherapy drug is also used which

can make the hair fall out and in many patients I've

spoken with it has. I already feel like I'm dealing

with just enough having the FMS/CFS, and at the age of

35 would like to hold on to one thing. I get so

frustrated since this person is ill with one thing,

and I take medications that if I get ill enough the

infection could be fatal. Yet when its my turn to seek

support I get this " oh I'm so bad " spiel yet they are

always out and about and I have to stay away from

crowds at the moment due to cold and flu season, not

that my joint knee effusions or feet are letting me

walk at the moment anyway. Finally, I learned to just

block this persons responses out. I feel I have

enough to deal with healthwise, plus the daily

challenges life also throws our way. When we need

support the most, especially from family we expect to

get it. Yet in CBT for anxiety it is taught that

expectations put too much stress on the body as they

can lead to disappointment. I just tell myself

wouldn't it be nice if this person understood or could

just offer some empathy and understanding. I finally

also learned that I have the power of how I react to

people and how they make me feel. So when I get

someone bragging like that, I go somewhere else in my

mind, change the subject, and know that elsewhere in

my life I have people that understand.

--- Graham wrote:

> I told a relative off for her insensitivity to my

> condition. After she asked me how I was and I told

> her I had a relapse, she totally ingnored what I

> said and went on boasting how fit and successful she

> was. I was always there for her, but when I needed

> some TLC, she totally shuns me. I just felt kicked

> when I was down. Anyway, that's life.

>

> stephanie wrote: Hi

> !

> You are not alone! Our bodies and brains are so

> overwhelmed that it is completely normal to even

> focus

> or concentrate on difficult situations. Life hands

> us

> challenges everyday, yet I try to avoid the

> difficult

> situations/people that I know can.

[Guest guest]

I think this is great advice Cheryl! We are all going

to have bad days, even healthy people feel vulnerable.

Or what about extremely healthy people that suffer

depression? We know we are all going to have bad days,

its a given when we are chronically ill and

overwhelmed. Studies have shown that if we can find

five things a day that we are grateful for, and focus

on those daily improvements can be made. Something

like making it to church, seeing the sunshine, etc are

great examples of that. No one gets through life

unscathed. Breakdowns will happen to us all.

--- Cheryl Marshall

wrote:

> Hello everyone,

> I'd say this is a really hot topic. I seem to

> have a total meltdown at

> least once every couple of weeks. It comes on a day

> when I have had several

> days of lots of back to back activity with no rest

> or down time. I can cry

> all day on those days and when my husband gets home,

> I tend to unload it all

> on him. Those days make me too want to run away and

> hide because life just

> feels too tough.

[Guest guest]

Hi Darlena, oh you are going through a lot…I do not like the though of you

sleeping in that big, open warehouse with just a couple of space heaters! At

least you now have a decent bed to sleep on. Of course you are feeling

overwhelmed with all that has happened and is happening, and yes, living in

physical surroundings of chaos is very wearing too. One does get like a deer

in the headlights when there is no break or relief. Never mind dealing with

everything now, just take care of yourself and go on your family trip. It

will all be waiting for you to deal with down the road, gradually, as you

are able.

It has been a tough year, and I pray that 2008 will be sweet and easy on

you! Hugs, Aylwin xox

[Guest guest]

I feel the same way, the more tired I get and the more I hurt the

more upset and frustrated I get and the easier I tend to snap at

other's espically those who make me feel like I am crazy and that

nothing is really wrong or my faviorate one of all is that I just

want the attention.

-- In CFAlliance , " johnmegandkay "

wrote:

>

>

> >

> > Do some of you with CFS/ME/FBS find yourselves emotionally

fragile

> from

> > time to time. Do you find yourself just worn down and not having

the

> > energy to cope with difficult people or situations that you'd

under

> > normal circumstances would not have trouble handling? Do you feel

> frail

> > and vulnerable?