Re: they don't get it

September 28, 2005

Dear Colleen, It breaks my heart to think that your kids actually accused you

of feeling sorry for yourself. If they had any idea how hard it was for you to

do Christmas they would be so grateful. All I can think of is that they're in

denial because they just can't accept that you are having so much difficulty.

They're so used to you being there for them, they can't realize that it's their

turn. I'm going to pray that someone or something gets through to them so they

can understand. Could you write them a long letter that lovingly gives them a

reality check? Maybe you could print up some of the e-mails from this support

group to help them understand. If you do, show them this:

HEY COLLEEN's KIDS: If you only knew how difficult living with this disease is.

Simply taking the medications that treat the disease can make people feel worse

than you probably do on your worst day with a cold or flu, and that's nothing

compared to the symptoms of the disease itself. You'd be exhausted too. Please

shower her with love and practical help. Some day you may be in her shoes with

health issues of your own and then you'll regret the way you treated her. Love

her and cherish her now while you can.

One thing that was so hard for me when I first started having limitations was

that I was used to expressing my love for my family by doing things for them,

like cooking huge meals and planning outings, etc. Now that I can't do that any

more I have to find new ways to relate to my family and it's hard. One thing I

did was buy a bunch of neat notecards and I try to write little notes to people

I love--even when they live nearby. But I still miss the days when I could

really throw together a feast with the house all festive with flowers and

everything organized and spotless and the floors actually clean (even the

baseboards).....SIGH.....We don't know what we got til it's gone.

Thanks for letting me vent!

take care, Colleen....laura

Colleen <colmcp@...> wrote:

--- In , " Grammi B " <grammi_love@m

.... they do NOT get 'why' I feel so lousy sometimes. Believe me, I

hardly say anything, as I know it is not a subject that will be

comfortable for them. (I have tried to explain things in the past.)

But when asked 'How are you doing? " I answer honestly, though without

all the details. I am sick and tired of saying " I'm fine. " when I am

not.

I can certainly relate!!! I have 4 grown children, a brother and a

sister that live out of my state. That is pretty much my family now.I

have also tried to explain things about auto immune, I have 3. fatigue

being my #1 problem ususally.

I decided I would have Christmas at my home last year. It took me weeks

to buy the tree, decorate it, clean my house, wrap all the presents I

had purchased prior to Christmas. It was really a labor of love for me.

I could only do a little each day, a little more on the weekends. It

honestly took me over a month to get ready for the " day " , even though I

had done Christmas for years, before becoming divorced with much more

family and a lot less effort. My ldest daughter volunteered to do the

salad and dessert, nice, my son brought wine and my other daughter

brought some rolls. It was a nice day. It took me about a month a get

everything cleaned up and put away. I was amazed how long it took me to

do anything. I really had to do stuff in pieces, a little each day.

The whole thing backfired on me. Now 3 of the kids aren't even talking

top me, mostly me not wanting to talk to them. After Christmas, it was

why don't you call and do something all day with the grandkids? Why

don't you exercise daily, go to the gym? " I think you feel sorry for

yourself " . Mom, Maybe you should consider therapy since you are so

tired. " I haven't had much of a social life for a couple of years.

People have pretty much stopped calling to ask me to join in whatever.

I had made that extra effort with my kids, going on steriods to attend

a wedding, taking steriods to visit my grandkids in CO. No, I don't

look sick. I'm heavier that I have ever been, but I generally look

fine, except for my fingers which are constantly swollen and bent over.

I emailed them " the spoons " email thionking maybe that would help them

understand. I'm a single woman alone and would sure appricate some help

around here, sometimes. The kids talk about helping out their friends

or could I help them, but never offe me any help or company. My job and

my health has to be my prioprity now and it seems no matter what I say,

I come across as lazy and having a pity party. I have never been like

this my whole life, but I honestly do the best I can now. I just can't

get it across to my children, and that hurts.

Sorry for the whine, but I needed it, Thanks!

Colleen

September 28, 2005

Dear Colleen i also know what you mean i have 2 kids and well my son

is usto the way that i am but my daughter is now 11 and she

remembers when i was not as bad as i am this year and well she well

still say mom can we go and do this like going to the zoo and i have

to tell her soemtimes that i just cann't go this time and she will

get so upset nad well start calling me a bad mom becuse i can't do

alot of things with here like i usto a few years ago and just taking

the dogs for a walk sometimes is a big job and my husband says that

he understands but sometimes i don't think he really does. (and from

now untill the first of the year he is out of the state with work).

and that is just making everything worse.

but i have sat down with my mother and explaind alot to here and she

know understands and it just takes time is what i have found out.

and i hate it when i'm at work and well i work with the public and

they will ask so how are you today? and i reply that i'm fine and

everything is good (even when i'm in pain and it feels like i can

not move anymore for that day ) well enough about me

melissa

September 28, 2005