Re: I am losing hope...

[Guest guest]

You are in my prayers I really hope you are feeling better soon just try

to rest I know its borring and I hope that will help you to feel a bit better

write to me anytime

(28 in australia also with CFS and Fm etc etc)

----- Original Message -----

From:

I am extremely exhausted..my legs feel like jelly my hands are icy cold and

I have major brain fog..I try to stay positive but its soo hard.. can anyone cfs

penpals give me a quick boost? hope you are all feeling great. <3

[Guest guest]

When you get this far down , it's' time to take a break from life and that

means from everything and everyone.

Make sure you've eaten something, taken your meds, turn off the phone or keep it

by your side.

Put on your houseshoes and p.j.s if need be, crawl in bed, with your pet and

check out of the world for as long as need be untill your body starts to rally

If you meditate, now's the time.

I've had days EXACTLY as you describe and If I don't the above things, it takes

a week for me to recoup.

I've often wondered if anyone else had trouble regarding their legs, mine give

me a lot of trouble, along with the weather.

Everytime the weather is going to change I get headaches.

Hope this helps, it comes down to the matter of taking care of yourself, inorder

to take care of the ones we love.

Sincerely,

----- Original Message -----

From:

I am extremely exhausted..my legs feel like jelly my hands are icy cold and

I have major brain fog..I try to stay positive but its soo hard.. can anyone cfs

penpals give me a quick boost? hope you are all feeling great. <3

[Guest guest]

I don't know how long you have had this but I've found it to be like an

elevator with several stops. On the first floor I feel like I don't want to

live but eventually I go on to the fourth floor were I feel better and

sometimes to the sixth floor. I have never gotten off but when on the first

floor I try to remember it will go up.

I hope you feel better soon, try to ride it out, take it easy on yourself.

We can be our own worst enemy, fighting it, for me, makes it worse.

So take care of you and no quilt.

Cee

In a message dated 3/14/2010 10:09:15 P.M. Pacific Daylight Time,

brnd.lopez1@... writes:

I am extremely exhausted..my legs feel like jelly my hands are icy cold

and I have major brain fog..I try to stay positive but its soo hard.. can

anyone cfs penpals give me a quick boost? hope you are all feeling great.

<3

[Guest guest]

I don't know if anyone else has responded from the group. I hope today is

perhaps better than yesterday.

I know that there are just some days that are awful and others that are not so

bad.

I try very hard to have a sense of humor -- but sometimes the pain and/or the

" blah " just get the best of me. I wish I could help you feel better -- I'm not

sure what to say though.

I find that a lot of people just expect us to have a positive attitude --

however, the pain, etc can just be so overwhelming -- sometimes I wish someone

would just validate my feelings --

after all, the way we feel is real -- " pretending " we don't feel that way means

we feel we don't believe ourselves --

so some days I just do the best I can to relieve some of my symptoms and if it

really doesn't help then I try and find something that can help me wait them out

-- tomorrow will be better or maybe worse --

I guess what I'm saying is -- the usual -- take care of yourself (whatever that

is for you) and hang on. For me -- I rest, or walk, watch tv or work on my

genealogy, call one of my kids or turn off the phone, try to change the world or

just hold on until tomorrow -- I also try to be nice if I can to other people

-- it feels good and sometimes they're nice back.

By the way -- keep checking in with the group -- they have lots of ideas and all

-- oh and before I forget search for CFDIS (did I get the letters right) --

there's a group that has practical ideas of managing many of the symptoms

On a more personal note -- I still haven't decided whether to title this year --

The Year of the Many, Many Changes -- or The Year of the Many Sucky(pardon my

choice of word there) Things. My one adult daughter says don't jinx things --

but the last few years my life has been perfectly capable of messing itself up.

One other note -- if anyone tells you to make lemonade out of lemons -- ask them

could they please supply the sugar as you are all out -- some days are just

going to be hard -- it's ok -- share some, cry some and fight as best you can.

Best wishes -- hope your day is a little sunnier (but less than 100 degrees),

Bette

>

> I am extremely exhausted..my legs feel like jelly my hands are icy cold and

I have major brain fog..I try to stay positive but its soo hard.. can anyone cfs

penpals give me a quick boost? hope you are all feeling great. <3

>

[Guest guest]

Hi - Hang in there girl....I know how you feel. Guess we all do.

When I really get down, I just try to find ONE THING that is good; my

kids, a sunny day, a silly movie, anything.... just to get me thru this

one day. It's quite a trick to stay positive when you are dealing with

chronic illnesses, your in pain, no one really gets it but we are

allowed to get ticked off or feel hopeless ...... Sometimes ya just

gotta vent, and you're welcome to vent here, or to my direct email.

I know it's cliche, but try to take just one day at a time. I think it

can all be completely overwhelming sometimes. Now, me personally? I

pray....I ask that I can just get thru today, maybe tomorrow will be

better? And sometimes, it IS. I know that is not everyone's belief and

I don't want to offend, but on my darkest days......it is the only thing

that gets me through it.

Know that we are here for you and hope you get to where you need to be.

STL Jane

>

> I am extremely exhausted..my legs feel like jelly my hands are icy

cold and I have major brain fog..I try to stay positive but its soo

hard.. can anyone cfs penpals give me a quick boost? hope you are all

feeling great. <3

>

[Guest guest]

I certainly relate to people losing hope. I do, hope,

people in that condition will consider going

to the Caribbean area if possible. Most of the CFS

people I heard from felt very healthy

while there !

Also, I have heard some good things about Human Growth

Hormone, which is not expensive in Mexico.

- B.

[Guest guest]

I live on the East Coast of USA in New England where the weather changes like

the wind--

constantly,,,,,

I have found when I visited a friend in California for a month

I could have never otherwise afforded it)

I felt much better.....

even BETTER when I go to Rhode Island or Cape Cod during the Summer--

laying seaside does a body(and a mind) good.

Now I cannot afford to really travel-

I bought one of those tent gazebos and put chairs in it --music--wind

chimes--and started a small flower garden out one side of it--the other side has

a kiddie pool about 18 inches deep--just enough for me to soak

in....IMPROVISE....lynn.

>

> I have felt defeated many times but I will not give up. I would so like to be

on a beach with the warm sun shining on me and hearing the crash of the

waves. OK now I really wnt to go LOL.

> hugs

> debbieg

>

>

> ________________________________

>

> I certainly relate to people losing hope. I do, hope,

> people in that condition will consider going

> to the Caribbean area if possible. Most of the CFS

> people I heard from felt very healthy

> while there !

>

[Guest guest]

I absolutely LOVE this, Lynn. What a wonderful idea to create a little paradise

for yourself and include a kiddie pool! That is what I call creative coping!

I think about coping as a seesaw. On one side are the circumstances and

stresses of our lives. I can tell you that it is much easier for me to stay

positive now, even though my physical situation is worse, than it was for me

when I was working fulltime and raising two kids. Some aspects are harder,

though, like dealing with loneliness and feeling less purpose to my life.

Back to the seesaw. On the other end are the things that can give me a boost -

like your paradise. It is critically important to manage the stresses in your

life but sometimes you just can't do anything more about them. But there are

always tons of options on the boost side! Music has a powerful influence on how

we feel, laughing is great and, with the internet, we can always find something

to laugh at. It is just so very important to figure out what can help you to

feel better and then " just do it " . Once you really find the power of this, it

can give you back some of the sense of control over your life that you lose when

you get sick.

One thing that I finally figured out is this (which certainly won't apply to

some): sometimes something happens to me that we call " the bottom falling out "

and I will suddenly feel just beyond exhausted, beyond fatigued, weak and shaky

and just completely wiped. Before long, I'll feel emotionally overwhelmed and

despairing. I *always* go straight to bed now when that happens. A couple of

hours of sleep make an amazing difference to me. I feel " normal " for me when I

wake up and the emotional devastation gets bypassed. If we are away from home

and I say " the bottom just fell out " , my husband knows he has to get me home

right now and he immediately goes into action.

So sometimes you change things if you can, like coming up with a system to feed

your kids without killing your self, to reduce your stress, sometimes you take

actions that boost your power to cope with what's left like watching a funny

movie or listening to some upbeat music, and sometimes you just let it all go

and take a nap. And sometimes you make an ocean in your backyard! Beautiful!

Oh, one more thing... when my twin sons were about 12, they came running into

the room one day and said, with lots of excitement, " Guess what we did, Mom! "

When I asked what, they said " We built a waterpark in the basement! " That was

one of the most terrifying moments of my life LOL! I guess they already knew

how to improvise!

Margie

> >

> > I have felt defeated many times but I will not give up. I would so like to

be on a beach with the warm sun shining on me and hearing the crash of the

waves. OK now I really wnt to go LOL.

> > hugs

> > debbieg

> >

> >

> > ________________________________

> > From: p_beith <p_beith@>

> > I certainly relate to people losing hope. I do, hope,

> > people in that condition will consider going

> > to the Caribbean area if possible. Most of the CFS

> > people I heard from felt very healthy

> > while there !

> >

>

[Guest guest]

What I did last year was swap my home in Albuquerque for a condo in Hawaii so it

didn't cost anything to stay there. I actually found them on craigslist. I

stayed in Waikiki for three weeks by myself and swam every day or at least

soaked in the water and then sat on the beach at night praying. I felt so good

for 6 months afterwords. It was only 425RT from here and I spent only about 1500

when I was there. Sometimes just to get out of the surroundings you are in may

help. I was there in the off season oct-nov. I felt like I was myself for the

first time in years and only had a few bad days.

> > ________________________________

> > From: p_beith <p_beith@>

> > I certainly relate to people losing hope. I do, hope,

> > people in that condition will consider going

> > to the Caribbean area if possible. Most of the CFS

> > people I heard from felt very healthy

> > while there !

> >

>

[Guest guest]

Guess our Motto to those who are new to these illnesses is

NEVER GIVE UP!

It has been a long time for me

and boy was s Law in act as well--

(what kind of god would let me have a heart attack on my 50th B-day?and bypass

surgery????)-

you will certainly find out that just because you are sick--

the world still goes on and everything and anything that can go wrong will.

It feels that way when you are sick-

I lost 5 immediate family members(one 40) within the first 2 years I was ill-

I really lost everything-savings/car/career almost my house.

Things just have a way of working out,that I cannot explain.

This illness tries to take away who you are -it gets right down to the very core

of your soul.

Do Not expect anyone who isn't on this roller coaster ride to understand you

or how you feel.

They cannot

it is impossible.

Find ways to deal on your own--

be quiet more when you want to bitch and complain--

it really reduces the burden we put on our families--

and YES we are a burden.

I remember the first few years of my illness beginning-

and I always feel sorry for new people because I have a clue what they are about

to go through--

I couldn't FEEL anything then--

only pain-

depression--

all negative all the time.

Once I realized I was really on my own with this-

other than support groups like this one--

something made me come back to being again.

When I couldn't get out of bed-

I had bird feeders at my windows to watch the birds--

sounds corny I know-but it helped--

I took up collecting gemstones-something I never had an interest in prior.

I would sit with my whole desk of gemstones and look at their beauty and learn

all the history behind them,,

It is also when I started gardening.

It was a sight-I used to lay right out on the dirt to weed or plant.

THEN someone took me to NYC and turned me on to Opera...I hated it before.

ALL of these items/things they all taught me to FEEL again.

Beauty-passion-hope

To stop--smell those roses.

Thats hard for a career nurse to do--to stop and slow down.

Well no choice

my BODY did what it wanted

I didnt choose it-

-it stopped me.

You are going to have to learn to be self centered in many ways.

Thank God my son was an adult when I became ill-

little kids

and a husband has to be very hard.

I do not have that burden-

most of you do I know.

Still if YOU DO NOT TAKE CARE OF YOU everyone suffers....

Margaret is right on target about the sleeping too-

when the bottom falls out or I feel I am going crazy-

I have memory loss-whatever--

I GO TO BED--LOL she is a lot like me.

You will find over time you will adjust to all this you have no choice.

I have learned so much about myself

I have strength I never knew was in me when I was healthy

It hurt to learn that all this time I really had no TRUE friends

but I am glad I learned.

I know because of my Lupus and Heart Disease I will not live to be an 80 year

old

maybe not even see tomorrow who knows...

yes it scares me.

But it also teaches me--everything happens for a reason..and you do have the

power within yourself to make it.

After the added Heart Surgery-I told EVERYONE I knew how I felt about them--If I

loved them--they knew it

if I hated them they knew it

I dumped bad for me friends and even some annoying relatives.

I am too sick for BS--Life is TOO Short and Time too Precious...Lynn

> > >

> > > I have felt defeated many times but I will not give up. I would so like to

be on a beach with the warm sun shining on me and hearing the crash of the

waves. OK now I really wnt to go LOL.

> > > hugs

> > > debbieg

> > >

> > >

> > > ________________________________

> > > From: p_beith <p_beith@>

> > > I certainly relate to people losing hope. I do, hope,

> > > people in that condition will consider going

> > > to the Caribbean area if possible. Most of the CFS

> > > people I heard from felt very healthy

> > > while there !

> > >

> >

>