just feeling down

[Guest guest]

Hey everyone! I am feeling a little down this last week and really just needed

to exasperate my feelings to someone who may understand. I am struggling with,

I think I have heard the phrase before as an, " impending sense of doom " . I had

my sister come visit from CA this last week. We didn't grow up together as she

was given up for adoption, so her visits are highly valued to me. When I found

out she was coming, I knew I had to let her know what she could expect of me

physically. In the last few years we have always shared new adventures together

as a whole family. This time I had to tell her, I may or may not be able. She

knew I have been ill (July 12 being a one year anniver. for this) but I have

found people not directly liviing your day-to-day stuff really just doesn't

truly know what it is like. I was able to enjoy the first part of the week for

the most part (two of the days anyhow), but the monster reared its head. It was

partly my fault. My brother took us to a restaurant, and I hadn't been real

choosy on my meal so I had a little fat. I ended up in the ER mid week, and

been not feeling well since. My brother doesn't understand either so he was

upset when I had to tell him I wouldn't be able to make it to the family picnic

today. " Well like what's the problem anyway, " he stated. He loves me tons,

just ignorant about it all. They almost rearranged their plans to fit me. I

would've really hated myself if they did that. Life must go on, right? And who

knows when I would've been able anyhow. I find myself feeling guilty a lot for

having this. I know its not my fault, but it affects so many lives, just not

mine. I have two daughters, eight and ten, whom I have been trying to

homeschool, trying to be a good mom...one like I was before with abilities and

time. Not one who causes my children to fear for their mom's life. Will she be

ok? Other mom's aren't sick? Why is God doing this to Mommy? Will she be

alive tomorrow? (I try to hide my illness and symptoms from them as best I can.

If I'm in pain, puking or lying around its pretty tough.) Not to mention my

husband is a social butterfly and he has sacrificed so much just to take care of

me. They speak of seasons of your life, you know not to worry because this

season will pass, but we all know with this disease it doesn't. At 28, I'm

looking at my life and what's to become of it? As a youth I always thought I

would do something great to help people, and now my greatness is if I can have a

painfree day.......it becomes really hard to worry about other lives. It is

really hard to have conversations with people even. Who wants to hear of how I

managed to take only 4 meds today, go for a walk, or take my girls to a park?

Those are my great things. Yes my life has changed.....drastically...not to

mention how my husband's and childrens'. Having this I have learned a vaulable

lesson about taking life for granted: just to wake up and feel normal, being

able to do what you want when you want, being content. Just when does this

lesson end??? Thanks for letting me vent! love B.

[Guest guest]

,

vent away! In my opinion, the hardest part of all my illnesses is the impact

it has had on those who love me. I am so blessed to have such a wonderful

family. They never question the validity of my pain or fatigue, even when my

labs are totally normal. Thankfully, my GI/hepatologist and internal med doc

are smart enough to know that we have to go by my symptoms and not by my panc

enzymes. However, try to convince some ER docs of that!

Anyway, I will never forget a day about 2 years ago, only a few weeks after

the acute panc attacks returned. I was in the hospital in birmingham, AL

since that's where my previous GI was located. It's 100 miles south of my

home, but only about 30 miles from where my daughter and her new husband live

until they complete college. Nikki was 20 years old, engaged to her now

husband for about 8 months, and just about to begin her junior year of

college. She was working very hard at college, very involved in her sorority,

president of the panhelenic society at her university(they oversee all

sororities and make sure they all follow the national sorority rules), and

working a lot of hours at a bank. She has health issues of her own

(rheumatoid arthritis, asthma, allergies that lead to lots of sinus

infections) so she needs to get more rest than the typical college kid. She

deals with daily pain in her joints that varies in intensity. She's dealt

with since she was about 10 so she says she wouldn't know how to act if she

ever had a day that was totally free of joint pain. She's such a trooper and

most people have no clue of her challenges that she faces every day. My point

to all of this is that she already had a lot of stress in her very busy young

life. She had stopped by the hospital to see me in between class and work.

She was sitting on the edge of my bed. We weren't talking a lot because I was

pretty drugged up. I looked at her and saw tears streaming down her face. I

automatically thought that maybe she was struggling in a class or had a fight

with her fiance. I asked her what was going on and she said, " I'm just so

worried about you. I'm terrified that I'm going to lose you and I still need

my mommy so very much. " I assured her that I intended to be around for many

years and that there was no way I was going to let her and (my

stepdaughter) off that easy. I told her I fully intended to stay around long

enough to drive her and every bit as crazy as Granny (my mom) makes me

and Aunt Betty (my sis). Of course, that lightened the mood and she and I

were soon laughing.

However, seeing the fear and pain in my baby girl's (yes, she'll always be my

baby girl) beautiful eyes hurt more than any amount of pain from the panc

attacks! For a while, I tried to hide things from her. However, in the end,

that caused her even more stress because even when I was having a good day,

she was afraid I was just keeping things from her. She and I had a talk and I

promised her that I would not try to keep things from her so when I told her I

was doing okay, she would know I was being honest.

I will tell you that despite the fact that there are often times I cannot do

things with her like I would like, she still thinks I hung the moon. She told

me a few months back that when people ask her who her best friend is, she

tells them it is me. I often see myself as a useless slug because I so often

am not capable of doing even simple household chores. Instead, my daughter

sees me as very strong and brave because in spite of my numerous

hospitalizations, ER visits, doctor's appts, etc., I still try to do all that

I can do for my family. Even though I'm often not able to participate in

outings or social events, I am still available night or day any time my

daughter needs me, whether it is a shoulder to cry on, a gripe about her

husband or in-laws, a joy to share, a dream for her and her husband's future,

and so on.

I share this with you who often feel like you are cheating your family because

you can no longer do all the things you'd like to do for your family, you may

find that your ability to be there for them emotionally is much more important

than being able to socialize or do things that cause physical energy.

Unfortunately, we'll probably always have those that 'just don't get it'. I

had to close the door on a 30+ year relationship with a 'friend' (I use the

term very loosely as I've realized she really had not been my friend for many

years). She would get very mad when I turned down invitations to come to her

house, go to a movie, out to dinner, etc. She'd constantly say things like

" It's not like you really have to do anything. You can sit on my couch/in the

restaurant/in the movie theater just as easily as you can sit in your recliner

at home. " At first I tried to explain that I didn't even have the energy to

get dressed. However, nothing I said changed anything, so I finally just said

no and when she started pushing I refused to try and explain myself. She

became very resentful that I was not able to 'come out and play' as I had been

in the past. Over time, her comments to me became more obnoxious and more

hurtful. I finally realized she was poison and despite the fact that her

family had been treated like a part of our family and invited to join in many

family functions, I had no choice but to close the door to a relationship that

was not beneficial for either of us. I found myself looking for reasons to

get mad at her and at times being rather petty and even rude to her. That is

not the type person I wanted to be. I am typically very kind and giving, but

she had hurt me so many times since I got sick again in July 2002, that I was

often looking for reasons to lash out at her. There were a lot of VERY mean

things that I could say to her and they would all be true. She's a very

insecure, selfish, self-centered person with all kinds of anxieties and

phobias that she lets hamper her life. She and her husband are not at all the

type of parents that my husband and I feel people should be. I could go on

forever, but the whole point is that I could say lots of mean, hateful things

to her that would all be true. However, saying those things would only be

hurtful to her and would not help her in any way. I knew that if I continued

talking to her that it would not be long before I lost my temper and said some

of the mean, hurtful things to her. I did not like the person I was becoming

when I talked to her, so around the middle of June, I made the decision to cut

the ties. I sent her an e-mail telling her that it was obvious that our

relationship was not good for either of us at this time and that I felt we

needed a break from each other before we ended up hurting one another even

more. I guess an e-mail might have been the wimpy way out, but I knew if I

told her over the phone and she began attacking me, I would attack back.

I haven't heard from her at all since I sent the e-mail in mid June and I have

to say it has been a great relief.

I'm not saying that everyone who 'just doesn't get' needs to be eliminated

from your life. Some may love you very much and simply wish to be able to

spend more time with you. They may not at all mean to be hurtful or cause you

pain. Educating these people may sometimes help. Other times, you may just

need to overlook their comments. If you haven't seen the day to day life of

someone living with a debilitating chronic illness, I imagine it is hard to

understand why just going out to dinner, to a movie, or a simple family

function is often as impossible for you as running a 30 mile marathon!

Hang in there and vent here anytime. You can be sure that we certainly

understand!

W

Alabama

----- just feeling down

> Hey everyone! I am feeling a little down this last week and really

> just needed to exasperate my feelings to someone who may understand. I

> am struggling with, I think I have heard the phrase before as an,

> " impending sense of doom " . I had my sister come visit from CA this

> last week. We didn't grow up together as she was given up for adoption,

> so her visits are highly valued to me. When I found out she was

> coming, I knew I had to let her know what she could expect of me

> physically. In the last few years we have always shared new adventures

> together as a whole family. This time I had to tell her, I may or may

> not be able. She knew I have been ill (July 12 being a one year

> anniver. for this) but I have found people not directly liviing your

> day-to-day stuff really just doesn't truly know what it is like. I was

> able to enjoy the first part of the week for the most part (two of the

> days anyhow), but the monster reared !its head. It was partly my

> fault. My brother took us to a restaurant, and I hadn't been real

> choosy on my meal so I had a little fat. I ended up in the ER mid week,

> and been not feeling well since. My brother doesn't understand either

> so he was upset when I had to tell him I wouldn't be able to make it

> to the family picnic today. " Well like what's the problem anyway, " he

> stated. He loves me tons, just ignorant about it all. They almost

> rearranged their plans to fit me. I would've really hated myself if

> they did that. Life must go on, right? And who knows when I would've

> been able anyhow. I find myself feeling guilty a lot for having this.

> I know its not my fault, but it affects so many lives, just not mine.

> I have two daughters, eight and ten, whom I have been trying to

> homeschool, trying to be a good mom...one like I was before with

> abilities and time. Not one who causes my childre!n to fear for their

> mom's life. Will she be ok? Other mom's aren't sick? Why is God doing

> this to Mommy? Will she be alive tomorrow? (I try to hide my illness

> and symptoms from them as best I can. If I'm in pain, puking or lying

> around its pretty tough.) Not to mention my husband is a social

> butterfly and he has sacrificed so much just to take care of me. They

> speak of seasons of your life, you know not to worry because this

> season will pass, but we all know with this disease it doesn't. At 28,

> I'm looking at my life and what's to become of it? As a youth I always

> thought I would do something great to help people, and now my

> greatness is if I can have a painfree day.......it becomes really hard

> to worry about other lives. It is really hard to have conversations

> with people even. Who wants to hear of how I managed to take only 4

> meds today, go for a walk, or take my girls to a park? Those are my

> gre!at things. Yes my life has changed.....drastically...not to

> mention how my husband's and childrens'. Having this I have learned a

> vaulable lesson about taking life for granted: just to wake up and

> feel normal, being able to do what you want when you want, being

> content. Just when does this lesson end??? Thanks for letting me vent!

> love B.

>

>

[Guest guest]

, I relate so much to what you are saying. Please feel free

to vent away. I'm 27 myself and often wonder what lays ahead for

myself. I have an extrememly supportive husband who understands

everything so well. But I too feel bad when he doesn't go out and

do things cause of my illness. I also relate to the family things.

I love my sis very much and i know she loves me, but she just get's

so frustrated by my limitations sometimes. She just thinks they

should cut me open and then i'll be fine. I've explained it's not

that easy. Some days she will be very understanding when I can't do

anything but lie around and sleep. And other days she gets annoyed

when i'm too sick to go to a family function. I think sometimes

it's very hard for family members to understand this disease. My

husband does cause he sees me in pain everyday and he sees how much

this hurts me. Where as family members who don't see me as often

don't quite get it. They are more worried that i've been out of

work since Nov from this disease rather than the fact that i'm in so

much pain.

I spent last night crying cause it hurt so much. So I completely

get those days when you feel down. I think it's great for you to

come here and talk about your feelings. Know you are not alone and

we all relate. Take care, Jen.