The thing I hate most about this damn disease ( well maybe not most, but
close) is how unreliable I have become. For example, today I promised my
kid and her friend that I would take them to a matinee' but when it came
time to go ,the headache from hell had descended and I am too miserable
and too loopy from pain meds to drive anywhere and the thought of being
in a theater with a loud movie is unbearable. I can no longer work,
volunteer for commitees,spell committee, make plans of any kind...I feel
like I am always letting everyone down. I hate that. I used to be so
active...working full time, volunteering, being there for people when
they needed me..Now I feel like a useless parasite much of the time. It
doesn't do a lot for my self esteem. And my kids are just getting used
to mom letting them down. I hate it. This is not who I am underneath
this disease. I wish my kids could have known me many years ago. I was
dynamite.  I was also a whole lot thinner.

Damn.

Thank you. I knew you would understand.

I second all of that.

But I was taller.  Somehow I
shrunk 1.5 inches.  I hate it when
that happens.

DITTO, DITTO, DITTO, DITTO

I get these wierd looks from other mothers and administrators at my girls'
elementary school like "Who are you?"  So many of the moms are involved and
volunteer at the school.  I am definitely made to feel inferior because I am
not up at the school volunteering my time (even though I work full time).  Talk
about feeling inadequate.

-Sharon in GA

I third that Rufie!My kids are grown, married and most of their lives it
is just as you've described. My middle daughter is having a hard time
forgiving me even now, even knowing that the reason for being
unpredictable was Lyme Disease. My one rule was never to promise
anything I couldn't keep. Before I started getting really sick I always
kept to that. Then I started to stop using that term "I Promise", and
the kids knew why. It didn't help them much back when.
I worked up until 1989. Don't ask me how I did it because I don't know.
It was full time and then part time. Then I just couldn't do it at all
any more. People started calling me lazy because I went from being a
real go getter at work and pathological about a clean house to no
outside work and overlooking everything in the house because I couldn't
even hold a dust rag because my hands hurt so bad. It has gotten even
worse since we moved to the Cape and I've gotten so ashamed I won't let
anyone in the house! God help me, please.

Helen

Friendship is in Love,
As Love is in Friendship!

Empty~Nest~Cape~Cod
Helen~Jim~Mariah

Rufie,

You said it. I was dynamite too. Nice, bright, thin and my familly and
friends
 could trust me. I was a hard worker... A full-time position + my own
assiociation. Plus, plus, plus....

A day in my life :

1. Today, I was supposed to go a photographer. My friends from California
were
supposed to see them this week-end. They will not see them this time.
They send their pictures immediately. As they are coming here for 2 days,
they were supposed to take them. They'll wait.

2. I was supposed to see my new boss to take my new business cards.
I've asked for them yesterday, this morning everything was ready
(E-Mail...).
He must have worked late yesterday to prepare everything.
I called saying that I had a flu. Very easy when your voice is alterated by
Lyme.
Everybody believes you.

3. I was supposed to have a lunch with a friend. Cancelled.

4. Today, my 6 year old sweet candy boy was invited for the first time to
a real birthday party. The parents of his little friend rent a Craft Studio
and I promised that we'll go together to Anna's party). The gift was waiting
in his bedroom for 3 weeks. I was supposed to meet the other parents.

I feel so bad today that I had to engage a  babysitter.
20 bucks for the babysitter (a new one, a nasty one, she took
a cab, I don't know why ??? and asked me 20 bucks for a cab.
Plus the gift, 20 bucks too, plus 3 bucks for the greating card.

Result : 63 buks instead of 23 + the feeling of beeing unreliable.

5. My home is messy (we were supposed to play cards tonight with friends,
but I cancelled).

Today I feel like a useless parasite and in fact I'm a victim.
But I'm unable to feel like a victim.
I wish my son could have known me some years ago.
It was a perfectly organised day, but I spent it in my bed.

Take care Rufie,

Marie

news:rufie710-B4180F.14462516022001@news.rcn.com...

Your kids are great and they are learning from you- and not all the lessons are
so bad as they seem soemtimes.  You are taking care of yourself- you need to.
You know what would happen if you didn't- it would be worse, right?
We can't push ourselves the way we used to when we were well- at least I can't-
without paying for it.  It is not the best world of options, but I believe you
choose the best ones and do the best you can.  You are modeling for them not to
deny what is going on but to take care of yourself.  You can't take care of
them at all if you get sicker- and you know your limits.  It is hard to forgive
yourself when your child/ren are involved- we want so much for them.  I know I
wish sometimes that I was the old me for my daughter.  I used to wish it a lot.
 But the now me is so much more aware and compassionate and I know you have
*many* wonderful-ness' and not all from pre-Lyme life I am sure.  I hope by the
time you read this you are already feeling better!!!
You are such a neat person and have so much to give and share.

Thanks Sarah, you are a total sweetheart.

In article <20010217001144.03017.00001...@ng-cs1.news.cs.com>,

--
"no day but today"

How do you guys think I feel am Im only 24????  I dont even have any kids or
know if i EVER will be able to!!!  My outlook on life has changed dramatically
and I am scared of the future!  My father is almost dying from Lyme and he
refuses to admit that he has it!!  He's got major heart problems that docs dont
know what causing it...he became ill in '89 with high spiking fevers, shaking
chills, travelling swelling pain, etc,  saw 20+ docs that could do nothing for
him and now, over 10 years later he has a pacemaker.  I tell him all the time
to see my LLMD but he DENIES lyme and will not discuss his health with me...he
was hospitalized around christmas and kept it from me!!!  I am so friggin
depressed I sit and cry by myself (I live with my fiance) for my Dad and for
myself and for all other people inflicted with Lyme disease.  I used to be a
cheerleader, honor roll student, graduate of SUNY Stony Brook with big dreams
of moving to NYC and becoming successful.  I am so scared that I will never be
able to give my fiance kids which he really wants so deperately.  I cry because
I feel like a disappointment and a failure when I tell my mom and dad that I
still have symptoms after 1 year of treatment...my dad's side of the family is
so anti-long term abx and frown upon my decisions.  They feel that if the abx
hasnt cured me then I never will be cured so just stop taking them and deal
with it!!!  I am so lost and so confused and feel so alone I hate it and hate
life sometimes.  I pass out on the subway going to work and I hate feeling like
I am so unpredictable from day to day.  I am trying my best to cope but I just
lose it every now and then.  Sorry to go on and on....but I really have no one
to talk to.

Thanks,
Debbie
Brooklyn

wow, I feel just like this. just recently I told someone I feel likethis
disease has taken away so much of who I am. they tried to be supportive by
saying things like..you are not your disease, you are the same person,. etc.
but the disease DOES rob you of who you really are. I can't work or make plans
and I hate that people cannot depend on me.
thanks rufie, for sharing this.

kj

I need to vent at times, too.

First, I have become ultra-sensitive since getting so sick.  I get my feelings
hurt so easily it's pathetic.  It interferes with my life.

Secondly, I've become SO self-sufficient that I honestly feel like I don't
"need" anyone anymore.  This may come from feeling so let down by my ex - he
abandoned me emotionally, physically, etc., when I got sick.  So what did he
do?  He was not there, didn't offer one pat on the back or one word of
encouragement, didn't take me to one MD appt. when not ONE of the suckers would
help me, until I threatened to divorce him.   I was left to lay in bed, sick as
a dog for 5 months before he came with me to the one who finally listened to
me.  Too late...the diseases had already entered my brain.

I think I'm nearly as emotionally unavailable now to others just like he was to
me for 23 years.  I'm scared to death of being hurt again and have tremendous
trouble letting people in to know me.  If someone says one hurtful thing, I'm
either gone, or I clam up for a long time or forever.

Now, the trouble is with Mom.  I think I've let her down due to my not being
able to listen to her negative things - she complains about everything from the
weather, IRS,  to the Stock Market to Congress.  She is so detail-oriented that
she details things to death and ends up wasting so much time and energy it
drives me NUTS.   And it's constant.

 I can't let her drag me down so I try to not even listen to her and I've
avoided calling her when I can.  She told me that she had a heart attack today,
she did not go to the doctor or call anyone - I know she's had heart trouble
for several years.  Since my Sister's death a little over a year ago, it's been
worse.  When Mother is gone, I'll have no one except two children who have
their own lives.  I rarely hear from my Son in Dallas and I NEED to stay out of
my Daughter's life.

  Now, I feel guilty about my avoiding Mom when I can, yet she won't let me
take ONE project that I can do off her hands. Is she  a glutten for punishment?
 I think so and there's nothing I can do about that either.

Man.  That felt good.

Denim

you go girl!!!
WOW
I have so many of the same things going on. you just never know when your
venting may help someone else know they are not alone with their feelings.
wasn't married 23 years ( so sorry about how he treated you) but in very
serious relationship when I got sick and after 2 years he left, couldn't take
me being in all this pain and getting no diagnosis. he actually started
believing the doctors that it might be in my head.
I am so leary of being hurt again too. I am independent to a fault...hard to
ask for any help.
and the mom thing!!!!!!!!!!! well, I won't even get started!!!!  lol
let's just say I don't call mom when I feel bad for support. me being sick
depresses her and she starts telling me about all the things I am missing out
on!!!
whoops, said I woudn't get started!

    ~kj~                                

"don't be afraid to try new things.
remember, amatuers built the ark,
professionals built the titanic."

Hi Rufie,
I know what you mean.  I felt okay this weekend, but today the right side of
my body is going numb and I am sore.   It must get old for my husband and I
worry about my young son.   It's hard to live like this, I feel alone in my
pain and fear.  I pray a lot and that helps.  I don't know what you do to
feel better, but I want you to feel like someone is out there thinking of
you.   I know what it is like to be up and down and unpredictable.  I hate
this disease too and every nasty thing it has done to my body.  Thank you
for your honest letter, hang in there, I'm still counting on being cured and
that keeps me going.  Angela

My turn.  My wife wants to leave me after 30 years of marriage.  I wake up with
my Lymebrain spinning and imagine living alone with these headaches and get
really scared.  I see myself old and feeble in some sanitarium.  I have nobody
except my 25 yr. old daughter who really can't do too much for me even if I
were willing to tell her how hopeless this is starting to look, which I'm not.
So far I can still drag myself to work, and I like my job, so that's a plus.
My doctor is now telling me he thinks I have an auto-immune problem, and I
think he's shying away from prescribing anymore.  He's out of town for at least
a week.  What happens to people who are on abx. year after year?  They admit
that some people are resistant to treatment but act like YOU can't possibly be
one of them.  When I was out cutting brush behind my cabin the news reports
said that Lyme is easily cured with a month of Penicillin, so I never
worried... Oh well, that's my rant.  Later, Bob

I'm sorry Bob!!  I wish things were better
all the way around!!!

In article <20010225205859.21765.00002...@ng-cr1.aol.com>,

Oh Bob....that is so awful. Email any old time if you want to vent or
scream or whatever. My marriage went through some hard times with this
illness... we are ok now , but it was rough there for a while. Best to
you..
Ruth

--

no day but today......

Remove nospam to email.

Bob,

I am so sorry your wife wants to leave.  I am the sick one and left my ex in
1995  after 23 years......he was insensitive to my being sick, I saw him as
uncaring, not helpful, etc.  Not once did he so much as hold me in his arms and
encourage me or comfort me when I was so sick I couldn't get out of bed even to
go to the bathroom.  Prior to the tick bites I'd had maybe one cold, the flu
twice and don't recall even taking so much as an aspirin.

My ex did not accompany me to one MD appt.for  5 months - even knowing that
they were completely writing me off as some psychotic or menopausal woman who
just needed some good sex.  In order to get him to come to an MD appt with me,
I had to threaten him with divorce.  I became so bitter toward him that I could
not stay.

If someone wants to leave, there's nothing you can do about it after you've
begged that person to stay.  It sounds like you do love your wife and I sure
hate to see one more marriage bite the dust due to an illness.

If there is a possibility that there are other issues involved in your wife's
possible departure, please talk to her about it now before the bitterness
escalates and the communication completely breaks down.

Good luck - I am wishing the best for you.

Denim - happy now with a man who cares about every aspect of my life and
accepts me as "damaged goods".

It is so very sad what this disease can do to relationships. I am so sorry Bob.
Is it possible to try therapy with someone trained in chronic pain?  
I hope things work out. If your wife is willing to hang on and work things out,
see if she will read the book "Sick and Tired of being Sick and Tired." email
me if you want the authors, It is very easy to read and goes into all the
different emotions triggered when a family member, or any loved one, has an
illness.

    ~kj~                                

"don't be afraid to try new things.
remember, amateurs built the ark,
professionals built the titanic."

You guys are the best.  Thank you very much.  Bob