Re: Hi Group. I am having trouble dealing with this disease!

[Guest guest]

>

> I am afraid of what else I am going to lose. I just pray I don't lose

> my last friend that I love with all my heart and soul. She means so

> much to me.

> Everyday she would ask me how I felt. That meant so much to me. She

> was by me no matter how tired, sore, or short tempered I was. No

> matter what. I truly love her. I am so tired of the rest of my life.

> I don't know how much longer I can deal with being to tired and in

> pain.

You're letting her know how much you appreciate her support? And

trying to give support back when you can? If so, you should both be ok.

> I am trying so hard to overcome this.

If there's one thing that being on this group has shown me, it's that

fibromyalgia is a long term thing. It seems to be amenable to

" living with " , but not " overcoming " .

> The depression associated with

> being in pain all the time is overwhelming in its self. I feel

> worthless. I miss the life I use to have. The family man, College

> educated with 4.0 GPA, computer networking degree and Mental health

> caseworker.

I didn't get a 4.0, but did graduate from an adult degree program and

have a coveted " Cum Laude " on my sheepskin. I had a career, built

over many years. I never had a family. I don't have kids. I have

siblings, who have their own problems and aren't any good at all

support-wise. I have some good friends that I talk to, but am very

careful about asking for anything in the way of support. They've got

their own problems too. But they're an important link to life

outside my experience, and outside of my life.

> Now, I cant stand what I have become. I am so afraid that

> my last love will grow tired of me and too, turn away. I know some

> days she is afraid to touch me. I never, ever show my pain to her. I

> know she can see it anyway.

I have to ask why. You don't have to dump on her emotionally, but

just " Boy am I in pain today! " might take a lot of the pressure off

of you. You are not responsible for maintaining her state of mind.

If you love each other, then hopefully the relationship is able to

withstand a bad fibro flare. She may be tip-toeing around you in the

same way you're tip-toeing around her, and for you to let her know

when you're in pain might take some stress off you both.

> I still work 60+hours a week as a case worker for mentally retarded

> adults. On days I hurt worse, I push myself even harder.

Again, I have to ask why you push yourself harder when you hurt. My

sister and I call this " Bullying yourself well " , and I don't think it

works very well with fibro. Perhaps you can take a hard look at how

you respond to the pain, and times when you are in bad pain, give

yourself a break. Think about ways that you can change your day-to-

day life in little ways, that might make things easier for you. Is

there any way you can get a handle on your work hours? 60+ hours per

week isn't good for anyone; for someone with chronic pain of fibro,

it's deadly.

> I finally broke down and am now

> looking for a full time maid service. Even more worthless.

Ummmmm...again, I have to ask why getting a cleaning service is some

sort of failure. If you can afford it, if it takes some of the

pressure off you, it's definitely worth it. I don't know about

anyone else, but I'm desperately allergic to cleaning chemicals like

dusting spray, bathroom cleaners, etc., so if I clean my house, it

triggers a bad flare. I have a cleaning service come in ever two

weeks. Straightening I can do. Cooking I can do. Occasional

vacuuming or rug cleaning when I'm having company I can do. Cleaning

- no.

Age 30 is a very special time in our lives. A lot of people feel at

age 30 that the future is limitless, and it's a time for hopes and

dreams. It's so hard to have something that ties you down, like the

pain of fibro. But I really suggest that you take a hard look at

your life, and your expectations of yourself. Getting a reasonable

schedule, not being afraid to say " I'm in pain today " , getting help

with household tasks, getting enough rest, finding out how to make

easy, nutritious meals, may take some of the pressure off. You're

not a failure for finding ways to cope and get around the burden of

this illness.

Z, hoping you feel better.

[Guest guest]

((()))

We understand the road you are on. I think that getting a maid

service is something you need to do for you, it'll help ease your

stress. I think that the days you push harder are what is causing

you to flare and depress some. I admire your dedication to the

special needs adults (I have adopted a set of SN twins with FAS and

pFAS and know I will go thru struggles as they get older).

Since you are going through a divorce, you have added stress. You

feel like a failure. Check to see if there is a Divorce support

recovery group in your area - some local churches even offer a class

to help you get your head turned back around on straight. Divorce is

a big stressor.

I think I would sit down with the kids and lay down the rules

at " your house " . Your new normal is that mommy and daddy DON'T live

together and I realize they are hurting too, but you have got to make

rules/consequences and stick to them for your house at least! Also,

check to see if there was any kid friendly counseling your kids (you

didn't say how old they were or if you did, I missed it in my haste)

could go thru. They need to be reassured over and over again that

this was NOT their fault (or yours or your soon-to-be exes). The

fault lies somewhere in the middle with the adults but never ever

with the kids! Another suggestion from a former single mom is to

refrain from saying anything negative, etc. about your ex. NO MATTER

what she says, you continue to be noncomittal, etc. This is an adult

problem and too many adults make the mistake of bringing the kids

into it (my ex did that.....it was hard to overcome).

Anyhow, ask away, can you tell I read what you wrote? You are not

alone any more....

(((Hugs)))

Darlene

>

> I am a 30 year old man and have already lost my

> marriage, career and my life as I know it. I hate

> that people don't understand that you cant see it on an xray or in a

> lab but it is still real.

> I am afraid of what else I am going to lose. I just pray I don't

lose

> my last friend that I love with all my heart and soul. She means so

> much to me.

> Everyday she would ask me how I felt. That meant so much to me. She

> was by me no matter how tired, sore, or short tempered I was. No

> matter what. I truly love her. I am so tired of the rest of my life.

> I don't know how much longer I can deal with being to tired and in

> pain.

> I am trying so hard to overcome this. The depression associated

with

> being in pain all the time is overwhelming in its self. I feel

> worthless. I miss the life I use to have. The family man, College

> educated with 4.0 GPA, computer networking degree and Mental health

> caseworker. Now, I cant stand what I have become. I am so afraid

that

> my last love will grow tired of me and too, turn away. I know some

> days she is afraid to touch me. I never, ever show my pain to her.

I

> know she can see it anyway.

> I still work 60+hours a week as a case worker for mentally retarded

> adults. On days I hurt worse, I push myself even harder. I once

had

> a beautiful home but since the separation and soon divorce I am in

an

> apartment. after I get home from work I cannot find the strength to

> keep it up after my kids leave to visit their mom. Over at mom's

they

> do not have chores or do any cleaning. They like it over there

better

> so now they don't want to be with me. I finally broke down and am

now

> looking for a full time maid service. Even more worthless.

> Please, I hate to whine. That is so not like me. I really am

having

> a bad week and I am out of resources. I hope this group

understands.

> I am sorry for the rambling. Thanks to you who actually read it and

> understand.

>

[Guest guest]

Wow, how are you holding all of that together? It sounds like you

are just wearing yourself ragged. I'm so sorry to hear that you are

struggling so much right now and I do understand I am a parent of 2

mentaly ill children and not only does this monster affect my body

but also my mind, and like you it makes me angry. Unlike you I had to

let go of my job( not recomending unless you have to)which ripped my

heart out. I don't think you are giving your friend enough credit

though it sounds like she has been through alot with you already, It

seems like she would be happy for you to lean on her a little more.

You are probably syubborn like me though and would rather be dying

first before letting someone help you. I know, been there,own that.

Hang in there.

'

>

> I am a 30 year old man and have already lost my

> marriage, career and my life as I know it. I hate

> that people don't understand that you cant see it on an xray or in a

> lab but it is still real.

> I am afraid of what else I am going to lose. I just pray I don't

lose

> my last friend that I love with all my heart and soul. She means so

> much to me.

> Everyday she would ask me how I felt. That meant so much to me. She

> was by me no matter how tired, sore, or short tempered I was. No

> matter what. I truly love her. I am so tired of the rest of my life.

> I don't know how much longer I can deal with being to tired and in

> pain.

> I am trying so hard to overcome this. The depression associated

with

> being in pain all the time is overwhelming in its self. I feel

> worthless. I miss the life I use to have. The family man, College

> educated with 4.0 GPA, computer networking degree and Mental health

> caseworker. Now, I cant stand what I have become. I am so afraid

that

> my last love will grow tired of me and too, turn away. I know some

> days she is afraid to touch me. I never, ever show my pain to her.

I

> know she can see it anyway.

> I still work 60+hours a week as a case worker for mentally retarded

> adults. On days I hurt worse, I push myself even harder. I once

had

> a beautiful home but since the separation and soon divorce I am in

an

> apartment. after I get home from work I cannot find the strength to

> keep it up after my kids leave to visit their mom. Over at mom's

they

> do not have chores or do any cleaning. They like it over there

better

> so now they don't want to be with me. I finally broke down and am

now

> looking for a full time maid service. Even more worthless.

> Please, I hate to whine. That is so not like me. I really am

having

> a bad week and I am out of resources. I hope this group

understands.

> I am sorry for the rambling. Thanks to you who actually read it and

> understand.

>

[Guest guest]

Hi ,

I am so sorry this Fibromyalgia monster got you so young. You are my son's

age and I can't even imagine him having to go through all of this.

I know what you mean as I have lost my marriage, career and life as I knew it

and am frustrated by the same lack of understanding as you are. I didn't start

Fibro symptoms until I was 40 and so I had lived a really great life up until

then. I lost it all little by little, but at least I had if for longer than

you.

I too hope you don't lose your friend. If she is as good a friend as you say,

you probably won't. It's frustrating for our friends that we can't make plans

and stick to them so that maybe she can understand that you can still be

friends, but just can't plan ahead too far to do things.

The stress of worrying what might come next is using up the energy you can use

to get through the days better. I was in denial for a long time, but when I

reached acceptance I was able to better direct my energy into what I actually

could do today or tomorrow. You can't overcome it, but you can live with it.

Don't give up, just re-direct your energy. You are not worthless. I have quit

worrying about the future, because I have no control over that.

I am amazed that you still work 60 hours a week. That would be one reason you

are so tired. You are not getting proper rest. Pushing yourself harder when

you feel worse will just make you feel worse tomorrow. It has a rebounding

effect. When you feel worse, try taking it a little easier and see how you feel

the next few days.

This is a great place to whine and let people support you who have been where

you are and who are going through what you are now. When you are better then

you can tell us all about how much better you are dealing with everything. We

all ramble.

Be kind to yourself. You are worth a lot and children are fickle. They will

want to be with you. Chores are a part of life and only a small part. They

will want to be with you for who you are, not what you can or can't do.

Children don't stop loving their parents because they aren't who they use to be.

I had my 6 y/o grandson stay the last 4 days with me and he understands that

Nana can't do what she use to do. If I go up and down the stairs, he knows next

time he will have to do it.

Gentleness is best. Treat yourself with kindness. Come here whenever you

want to. Do you have doctors who are treating you for this monster. Maybe you

need help or need to slow down.

I wish you all the best,

Marti in CT (59 and still hanging in there.)

Green wrote:

I am a 30 year old man and have already lost my

marriage, career and my life as I know it. I hate

that people don't understand that you cant see it on an xray or in a

lab but it is still real.

I am afraid of what else I am going to lose. I just pray I don't lose

my last friend that I love with all my heart and soul. She means so

much to me.

Everyday she would ask me how I felt. That meant so much to me. She

was by me no matter how tired, sore, or short tempered I was. No

matter what. I truly love her. I am so tired of the rest of my life.

I don't know how much longer I can deal with being to tired and in

pain.

I am trying so hard to overcome this. The depression associated with

being in pain all the time is overwhelming in its self. I feel

worthless. I miss the life I use to have. The family man, College

educated with 4.0 GPA, computer networking degree and Mental health

caseworker. Now, I cant stand what I have become. I am so afraid that

my last love will grow tired of me and too, turn away. I know some

days she is afraid to touch me. I never, ever show my pain to her. I

know she can see it anyway.

I still work 60+hours a week as a case worker for mentally retarded

adults. On days I hurt worse, I push myself even harder. I once had

a beautiful home but since the separation and soon divorce I am in an

apartment. after I get home from work I cannot find the strength to

keep it up after my kids leave to visit their mom. Over at mom's they

do not have chores or do any cleaning. They like it over there better

so now they don't want to be with me. I finally broke down and am now

looking for a full time maid service. Even more worthless.

Please, I hate to whine. That is so not like me. I really am having

a bad week and I am out of resources. I hope this group understands.

I am sorry for the rambling. Thanks to you who actually read it and

understand.

---------------------------------

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[Guest guest]

Welcome . Of course we understand. This FM monster robs us of the lives

we want to lead. I hope your best friend does not give up on you, too. Please

don't have it in your head, though, that if she does it will be your breaking

point. Your kids need you even if they'd rather be at their moms. Sounds like

you need to be the disciplinarian, the one who sets limits. It's too bad that

you and your ex can't be united in your parenting methods. Maybe some family

counseling would help?

Anyway, we are here to listen and support you.

Jeanne in WI

I am a 30 year old man and have already lost my

marriage, career and my life as I know it. I hate

that people don't understand that you cant see it on an xray or in a lab but

it is still real. I am afraid of what else I am going to lose. I just pray I

don't lose my last friend that I love with all my heart and soul. She means so

much to me. Everyday she would ask me how I felt. That meant so much to me.

She was by me no matter how tired, sore, or short tempered I was. No matter

what. I truly love her. I am so tired of the rest of my life.

I don't know how much longer I can deal with being to tired and in pain. I am

trying so hard to overcome this. The depression associated with being in pain

all the time is overwhelming in its self. I feel worthless. I miss the life I

use to have. The family man, College educated with 4.0 GPA, computer networking

degree and Mental health caseworker. Now, I cant stand what I have become. I am

so afraid that my last love will grow tired of me and too, turn away. I know

some days she is afraid to touch me. I never, ever show my pain to her. I know

she can see it anyway. I still work 60+hours a week as a case worker for

mentally retarded adults. On days I hurt worse, I push myself even harder. I

once had a beautiful home but since the separation and soon divorce I am in an

apartment. after I get home from work I cannot find the strength to

keep it up after my kids leave to visit their mom. Over at mom's they do not

have chores or do any cleaning. They like it over there better so now they

don't want to be with me. I finally broke down and am now

looking for a full time maid service. Even more worthless.

Please, I hate to whine. That is so not like me. I really am having a bad

week and I am out of resources. I hope this group understands. I am sorry for

the rambling. Thanks to you who actually read it and

understand.

[Guest guest]

Hang in there ...

You are going through so much, its okay to let yourself feel hurt and

frustrated and even angry. Try not to push everyone away though, it

sounds like your friend is your friend no matter what and they are

hard to find. I know its difficult but try and be patient with your

kids, I have 2 of my own and it kills me that they seem to have a

better time with their other parents and I feel like thats my fault. I

hope things get a little easier on you hun, have you tried talking to

someone? I started seeing a therapist a few months ago and just that

hour a week really helps me just let go.

HUGS!

Aly

>

> I am a 30 year old man and have already lost my

> marriage, career and my life as I know it. I hate

> that people don't understand that you cant see it on an xray or in a

> lab but it is still real.

> I am afraid of what else I am going to lose. I just pray I don't lose

> my last friend that I love with all my heart and soul. She means so

> much to me.

[Guest guest]

Hi ,

I sure do understand how you are feeling. I use to have my own ceramic

studio and had to close it down. I can barely get out of bed some

days. The depression really gets bad some days but this group is a

good source of understanding and comfort. I hope you keep coming back

here. Mostly I just read many of the posts but now and then I respond

as I am now. I hope your spirits are lifted by this group. I know it

has helped me many times. Take care and know we are all here for you.

Donna (From Michigan)