RE: Found this applicable..no matter what your disease

[Guest guest]

http://chronicfatigue.about.com/library/weekly/aa051501a.htmComing to

Terms with a Life You Didn't Plan

By Patti Schmidt

Normally, the thought of overcoming obstacles

is not abhorrent to me; in fact, I usually enjoy it. In

my pre-CFIDS life as a newspaper editor,

obstacles to getting the story were a simple fact of life. I

did whatever was necessary — work overtime,

spend money or resources, try a different game plan

— and something I tried almost always worked.

But with Chronic Fatigue Immune Dysfunction

Syndrome, I found myself with something I

couldn't " work " around. I couldn't pretend that CFIDS

wasn't there; I couldn't shed it like an old

skin. I couldn't even work harder to overcome it. In fact,

working harder is exactly what I shouldn't be

doing.

Which is why this thing is impossible to

" overcome. " I found myself searching desperately instead for

a way to live with this illness. How do you

learn to live with something that robs you of everything

you hold dear? How do you reconcile yourself to

a life you didn't plan?

The answer is: it ain't easy, my friend. There

is no shortcut to acceptance. Each of us has to do this

the hard way.

I went through the

just-realized-this-isn't-going-away stage. Before that, I was at the

I'll-be-back-to-work-in-no-time phase. I soon

headed into the Godallmighty-I'm-mad phase, to be

followed by the

guess-I'll-live-with-it-after-all phase. This follows

Kubler-Ross' four-stage

process of grieving quite nicely — denial,

bargaining, anger, acceptance.

And we do each have to go through a grieving

process for what we've lost because of Chronic

Fatigue Syndrome or Fibromyalgia: our jobs, our

healthy selves, our dreams of what we thought our

lives would be. We have to mourn our losses

before we can fully accept the limitations CFS/FMS

places on us. I think I've finally figured out

that emotional milestones are not easily won. You proceed

through the process a little bruised, a little

unsure of yourself.

My personal battle has had two separate parts.

First, my rational self began the process of realizing

that CFIDS had changed my life irrevocably.

That self fired off letters to senators, wrote columns

about CFIDS and dutifully took her medicine

every day. That self spent countless hours educating

herself about CFIDS. That self can calmly

recognize when she's done too much and when she needs

to rest. That self doesn't deal in wishes and

dreams and what-ifs.

But my child-like, emotional self was another

thing entirely. She spent months alternately denying,

pouting, screaming silently and making a

nuisance of herself. She couldn't seem to get it through her

head that she was no longer who she was before

CFIDS and that everything is different now. She

kept stomping her foot and demanding to know

why we can't go back to our old life, which we liked

just fine, thank you very much. Worst of all,

she couldn't answer the question: Now what?

So I figured out this much: To go on with my

life, I needed the answer to that question. And since I

had already spent several months " stuck " in the

phase of struggling to accept CFIDS, I decided that I

needed some counseling to help me sort out that

answer. I needed someone to help me understand

how I could carve out a life that I want to

live in despite this illness.

That was not an easy admission to make; I would

have liked to be able to " handle this " by myself.

But a few brief sessions (three actually) with

a psychologist helped me understand which issues were

a problem for me, which in turn made it easier

to deal with me.

Coming to Terms with a Life You Didn't Plan

Coming to Terms - Part 2

By Patti Schmidt

For me, the most valuable thing about seeing a

counselor was what led up to it — I had to think long

and hard about what I would say once I got

there. Thinking about how to articulate the problem

made me ask myself some tough questions. How do

I feel about CFIDS and its effects on my life? Am

I angry? Sad? Has CFIDS ruined my life? Am I

handling this badly? Do I try to " tough it out " too often?

Why does it matter so much to me that this

illness be " legitimized? " What have I done so far to come

to terms with this illness? What if I'm like

this for the rest of my life? How has this illness affected the

people I care about and their relationship with

me?

Could you answer those questions? If not,

perhaps counseling would help you, too. The valuable

lessons I learned in counseling weren't

earth-shattering. Most of what helped was the realization that

all of the important stuff in my life was still

there. Despite CFIDS, the things that are important to me

— my relationship with my husband, kids and

family, and my ability to contribute something to the

world — are still satisfying. Despite CFIDS, I

am a relatively happy person. I've decided CFIDS hasn't

" ruined " my life so much as changed it

profoundly.

I learned very quickly that I was sometimes my

own worst enemy. For instance, I was overly

concerned and terribly unhappy about the weight

gain CFIDS meant for me. Since exercise makes me

relapse, and I eat a relatively healthy diet,

my counselor helped me realize that there's little I can do

to change my weight. It's simply something I

will have to adjust to. So now I try to remind myself

often that I'm not a bad person just because

I'm chubbier than I used to be.

I was also berating myself and feeling guilty

about all the things I could no longer do routinely —

cook, clean up, enjoy hobbies or sports or fun

outings. I worried that my husband was getting the

end of a very pointy stick — wasn't I a drag?

Wasn't he sick of doing all the work? Didn't he wish he

had a healthy wife? How awful is this for him?

When my husband and I talked about these

issues, he pointed out something very valuable to me: If

the situation were reversed, would I still love

him, he asked. Of course, I said, stung he'd even asked

the question. Then I realized: I was assuming

the worst of him when I assumed he'd love me less

because I'm sick.

Then we talked about what bothered him worst

about my being sick and his responses surprised me

— an always-messy house, a lousy social life

and my tendency to overdo and then relapse. Now we

simply look for things to do that aren't

tiring, like movies, going to museums (we bring the wheelchair

for me) and going for long drives together. We

got a cleaning service to come in every other week,

making the house livable again. And I vowed to

work on resting and not overdoing it. It's made a

small — but significant — difference. We feel

like we're " handling " it. And, hey, life isn't so bad! The

best part: I don't think often about this stuff

anymore.

Probably everyone with a chronic illness has a

few of these issues hiding in their emotional closet.

Like all storage areas, even our emotions need

an occasional " airing out. " Naturally, your issues and

obstacles will be different than mine. Yours

may include financial difficulties or worry that you'll never

get married or problems getting the people you

care about to support you in your struggle. But

whatever your issues, dealing with yourself

first is paramount.

What do you feel about CFS/FMS? Go into your

own emotional closet. Any tough questions piling up

in there? Surely some worries, some

insecurities, some problems are there, stuck on a shelf like so

many stuffed animals. My advice: Take them

down one at a time and struggle with them until they

are lying at your feet, trampled and no longer

bothersome. Fight dirty.

If you can't win the struggle — or if your

emotional closet is empty or dark and scary or too full —

get help. Once you're done with that, you can

get on with your life.

[Guest guest]

Hi all. I found this message to be very inspirational, no matter

that my circumstances are much different. I echo your advise to find

pleasure in what you can do, not dwell on what you can no longer do.

Keep it up!

jeribelle2000

> http://chronicfatigue.about.com/library/weekly/aa051501a.htmComing

to

> Terms with a Life You Didn't Plan

>

>

> By Patti Schmidt

>

> Normally, the thought of overcoming

obstacles

> is not abhorrent to me; in fact, I usually enjoy it. In

> my pre-CFIDS life as a newspaper editor,

> obstacles to getting the story were a simple fact of life. I

> did whatever was necessary — work overtime,

> spend money or resources, try a different game plan

> — and something I tried almost always

worked.

> But with Chronic Fatigue Immune Dysfunction

> Syndrome, I found myself with something I

> couldn't " work " around. I couldn't pretend that CFIDS

> wasn't there; I couldn't shed it like an old

> skin. I couldn't even work harder to overcome it. In fact,

> working harder is exactly what I shouldn't

be

> doing.

>

> Which is why this thing is impossible to

> " overcome. " I found myself searching desperately instead for

> a way to live with this illness. How do you

> learn to live with something that robs you of everything

> you hold dear? How do you reconcile yourself

to

> a life you didn't plan?

>

> The answer is: it ain't easy, my friend.

There

> is no shortcut to acceptance. Each of us has to do this

> the hard way.

> I went through the

> just-realized-this-isn't-going-away stage. Before that, I was at the

> I'll-be-back-to-work-in-no-time phase. I

soon

> headed into the Godallmighty-I'm-mad phase, to be

> followed by the

> guess-I'll-live-with-it-after-all phase. This follows

> Kubler-Ross' four-stage

> process of grieving quite nicely — denial,

> bargaining, anger, acceptance.

>

> And we do each have to go through a grieving

> process for what we've lost because of Chronic

> Fatigue Syndrome or Fibromyalgia: our jobs,

our

> healthy selves, our dreams of what we thought our

> lives would be. We have to mourn our losses

> before we can fully accept the limitations CFS/FMS

> places on us. I think I've finally figured

out

> that emotional milestones are not easily won. You proceed

> through the process a little bruised, a

little

> unsure of yourself.

>

> My personal battle has had two separate

parts.

> First, my rational self began the process of realizing

> that CFIDS had changed my life irrevocably.

> That self fired off letters to senators, wrote columns

> about CFIDS and dutifully took her medicine

> every day. That self spent countless hours educating

> herself about CFIDS. That self can calmly

> recognize when she's done too much and when she needs

> to rest. That self doesn't deal in wishes

and

> dreams and what-ifs.

>

> But my child-like, emotional self was

another

> thing entirely. She spent months alternately denying,

> pouting, screaming silently and making a

> nuisance of herself. She couldn't seem to get it through her

> head that she was no longer who she was

before

> CFIDS and that everything is different now. She

> kept stomping her foot and demanding to know

> why we can't go back to our old life, which we liked

> just fine, thank you very much. Worst of

all,

> she couldn't answer the question: Now what?

>

> So I figured out this much: To go on with my

> life, I needed the answer to that question. And since I

> had already spent several months " stuck " in

the

> phase of struggling to accept CFIDS, I decided that I

> needed some counseling to help me sort out

that

> answer. I needed someone to help me understand

> how I could carve out a life that I want to

> live in despite this illness.

>

> That was not an easy admission to make; I

would

> have liked to be able to " handle this " by myself.

> But a few brief sessions (three actually)

with

> a psychologist helped me understand which issues were

> a problem for me, which in turn made it

easier

> to deal with me.

> Coming to Terms with a Life You Didn't Plan

>

>

> Coming to Terms - Part 2

>

>

> By Patti Schmidt

>

> For me, the most valuable thing about seeing

a

> counselor was what led up to it — I had to think long

> and hard about what I would say once I got

> there. Thinking about how to articulate the problem

> made me ask myself some tough questions. How

do

> I feel about CFIDS and its effects on my life? Am

> I angry? Sad? Has CFIDS ruined my life? Am I

> handling this badly? Do I try to " tough it out " too often?

> Why does it matter so much to me that this

> illness be " legitimized? " What have I done so far to come

> to terms with this illness? What if I'm like

> this for the rest of my life? How has this illness affected the

> people I care about and their relationship

with

> me?

>

> Could you answer those questions? If not,

> perhaps counseling would help you, too. The valuable

> lessons I learned in counseling weren't

> earth-shattering. Most of what helped was the realization that

> all of the important stuff in my life was

still

> there. Despite CFIDS, the things that are important to me

> — my relationship with my husband, kids and

> family, and my ability to contribute something to the

> world — are still satisfying. Despite CFIDS,

I

> am a relatively happy person. I've decided CFIDS hasn't

> " ruined " my life so much as changed it

> profoundly.

>

> I learned very quickly that I was sometimes

my

> own worst enemy. For instance, I was overly

> concerned and terribly unhappy about the

weight

> gain CFIDS meant for me. Since exercise makes me

> relapse, and I eat a relatively healthy

diet,

> my counselor helped me realize that there's little I can do

> to change my weight. It's simply something I

> will have to adjust to. So now I try to remind myself

> often that I'm not a bad person just because

> I'm chubbier than I used to be.

>

> I was also berating myself and feeling

guilty

> about all the things I could no longer do routinely —

> cook, clean up, enjoy hobbies or sports or

fun

> outings. I worried that my husband was getting the

> end of a very pointy stick — wasn't I a

drag?

> Wasn't he sick of doing all the work? Didn't he wish he

> had a healthy wife? How awful is this for

him?

> When my husband and I talked about these

> issues, he pointed out something very valuable to me: If

> the situation were reversed, would I still

love

> him, he asked. Of course, I said, stung he'd even asked

> the question. Then I realized: I was

assuming

> the worst of him when I assumed he'd love me less

> because I'm sick.

>

> Then we talked about what bothered him worst

> about my being sick and his responses surprised me

> — an always-messy house, a lousy social life

> and my tendency to overdo and then relapse. Now we

> simply look for things to do that aren't

> tiring, like movies, going to museums (we bring the wheelchair

> for me) and going for long drives together.

We

> got a cleaning service to come in every other week,

> making the house livable again. And I vowed

to

> work on resting and not overdoing it. It's made a

> small — but significant — difference. We

feel

> like we're " handling " it. And, hey, life isn't so bad! The

> best part: I don't think often about this

stuff

> anymore.

>

> Probably everyone with a chronic illness has

a

> few of these issues hiding in their emotional closet.

> Like all storage areas, even our emotions

need

> an occasional " airing out. " Naturally, your issues and

> obstacles will be different than mine. Yours

> may include financial difficulties or worry that you'll never

> get married or problems getting the people

you

> care about to support you in your struggle. But

> whatever your issues, dealing with yourself

> first is paramount.

> What do you feel about CFS/FMS? Go into your

> own emotional closet. Any tough questions piling up

> in there? Surely some worries, some

> insecurities, some problems are there, stuck on a shelf like so

> many stuffed animals. My advice: Take them

> down one at a time and struggle with them until they

> are lying at your feet, trampled and no

longer

> bothersome. Fight dirty.

>

> If you can't win the struggle — or if your

> emotional closet is empty or dark and scary or too full —

> get help. Once you're done with that, you

can

> get on with your life.

[Guest guest]

thanks i needed this right now. kathy in il