Returning to Work / Seeking a Moment Of Normalcy

[Guest guest]

Jen,

You wrote, " I will be returning to work...even though..i'm still ill, I need

to return to something normal...but I still wake up some nights crying in

pain. "

I am sorry I overlooked your post about returning to work.

What I appreciated most from reading your post is your appreciation for the

presence of some sense of normality in your life. As I recall you are just

finishing up your first year of marriage and your husband is working hard to

finish law school. I understand your desire to put things back they way they

were.

It is hard on me when I know that my illness has affected the lives of so

many people I love. I also know that when I over do it, and end up feeling

worse,

makes them more frustrated than if I would just live within the realm of my

illness. What I don't know that I see, is the

joyful response on their face when I feel good and get out and participate in

life. So, what they say and what they show are often two different things. In

my effort to give them a couple of 'good' or 'normal' days, I often find that

I, 'grin and bear it.' When I hear later that they, " for a moment I forgot

you were even sick, " it only compounds how much I realize that when I became

ill, it want only my life that changed that day, never to be the same again, but

those who love me, too.

I am on disability, but sometimes, I wish there was some way that I could do

something that could make a dollar or two. As with most people, it took years

to be awarded disability, there is no way that I can risk jeopardizing that

what so ever. I also am on pain medication 24/7 so that eliminates almost

anything I could do. Every job I know requires a drug tox screen as a

preemployment

criteria. I know there are thousands of people with chronic pain in the world

that are managed on Opiods and are working. I am not sure how that works,

unless they work for themselves.

Lastly, I think it is important that life be lived as honestly as possible.

It should not be lived basing self esteem on the opinions of other people.

Someone in a previous post mentioned that pain is the body's cry that something

is

wrong. If you are still waking up crying in pain, I am not sure that is

consistent with being ready to return to work. What I do, in lieu of seeking

employment, is to do volunteer work. Thus far, I have been unsuccessful in

meeting

all of my commitments. This tells me that I am in no way ready to take on the

responsibility of a job where other people would depend on me relieving them so

they could go home.

Karyn E. , RN

Executive Director, PAI

http://www.pancassociation.org

Pancreatitis Association International

[Guest guest]

Karyn,

Thanks so much for the nice response. I actually decided that it

was not the right time for me to return to a full time nursing job.

It was a hard decision and one that I debated about for awhile, but

in the end decided it was for the best.

Along with just being married and husband in law school, I have just

graduated from nursing in 2002. I guess why this has been so hard

for me to accept. All these great wonderful things were happening

in my life and I had to get ill. And I guess I find it frustrating

cause they still don't know what's making me ill. I even had my

surgeon question if this was psychological. I just find it such a

frustrating process and I do wish that my life was more " normal " .

I also have begun to understand how hard this is on my husband. He

sees me in constant pain and knows he can't do anything to fix it.

I know our lives are never going to be the same.

I pray and I hope that one day they " fix " me or at least tell me

what's gonna happen. But I know this will probably never be. We

are both learning together to accept this and for me to accept being

ill. It's quite the learning process. He does enjoy those days

when I actually feel half way okay and he understands those days

when i'm not at all. Thanks for the reply. Jen

[Guest guest]

Karyn,

I really enjoyed your post on this subject. I think we often forget how hard

our illness is on those who truly love and care for us. I do know that if I

have learned nothing else from dealing with chronic illness, I have certainly

learned who my true friends are and who I can really count on to stand by me, no

matter what! I had to end a 'friendship' with a person that had been in my life

since we were only 12 years old. She and her family were almost family to me

and were included in many of our family gatherings. Several months after my

attacks returned in July 2002, I realized that she had not been my 'friend' for

a very long time, if ever. I had known she had a lot of jealousy and resentment

toward me in many areas, but simply overlooked that and tried my very best to

show her that she had her own very special qualities. Obviously, my support,

encouragement, and friendship were not enough to overcome her insecurities and

resentment. We had a 3 month split in January 2003, then got back together in

April 2003, after she gave a half hearted apology. Honestly, I think I would

have been fine even then to never resume the relationship. However, her son is

the age of my dear nephew and the boys got along so well that it was a joy to

include her family and son in gatherings with my sister, brother-in-law, and

nephew. Also, my husband enjoyed socializing with them on occasion. So, I

accepted the apology and accepted my 'friend' as she was, knowing that I would

never again feel toward as I had felt over the last 30 years. I was actually

thankful to know the truth about her resentment toward me. We continued the

relationship until June of this year. I was becoming a person I didn't even

like any time I was around her or even spoke to her. I was so on guard with my

feelings with her that I was fast becoming a person I didn't like. I tried to

just distance myself, not be available when she called or invited us to do

things, avoid answering the phone when she called (thanks to caller-id).

However, even though that helped some, she still was much too able to push my

buttons. Finally, I realized that for her sake and mine, I had to end things.

I simply told her that it was obvious our 'friendship' was not good for either

of us at the time and that I felt we needed to take a break before one of us

ended up causing even more pain to the other than we already had. This was near

the end of June and I've had no contact with her since. I have to admit that it

has been a great relief for me. I am a very open, honest, giving person and I

do not like to have to guard my feelings. However, when you have been burned by

a heat source you didn't even know existed, it makes you rather leary of getting

too near the source again!

I think one of the main things with this person was that when I got sick, I was

no longer able or willing to come and play at her beck and call. My good days

and energy were reserved more for my family than for her and she couldn't handle

that. She took it totally personal when I had to cancel plans or even when I

opted out on an invitation. If I had a nickle for every time she said stuff to

me that ticked me off, I'd be rich! things like 'it's only dinner and a movie -

all you have to do is sit there - you can sit there just the same as you can at

your house' or 'you can sit around at my house just the same as you can at

yours' or 'I only need to go to the mall for a short trip - you need to make

yourself do things' or 'why do you have to go to the ER and/or be admitted to

the hospital - can't they just let you give yourself shots of pain medicine at

home?'

One of my 'favorites' and pretty much the last straw was when I was 'hosting' a

bridal shower for her daughter a couple of months prior to Nikki's wedding.

(essentially she and I were giving the shower together but I was listed as the

host for etiquette purposes - we had agreed that I would provide all the food,

drinks, games, and prizes, and she would provide decorations. She wanted to

'use' several of the brand new 3 " X 9 " pillar candles that Nikki and I had

gotten for Nikki's wedding, which were not cheap, by the way! I told her that

Nikki would have a stroke if I tried to set up used candles at her wedding

ceremony! She said 'why won't you let me use some of Nikki's wedding candles

for Laci's bridal shower - I'm only going to burn them for a couple of hours

during the shower - there will still be some of the candles left for Nikki to

use at her wedding'. I just told her NO WAY! She then saw some pillar candles

that I had used for something else that had been lit and burned for about 30

minutes and asked if she could use those. I told her that she could certainly

use those since they weren't going to be used for Nikki's wedding. She then

said, " Well, I'm sure that Laci won't have a problem with having 'USED' candles

at her shower! "

Sidetracked again. Anyway, it is hard to try to have a normal life when you

cannot depend on ever being dependable! We must all continue to do our best,

though!

W

[Guest guest]

Jen,

Deciding to go back to work is a very difficult decision to make.

I have left a job and returned to work on three separate occassions.

The last time I decided to go back to work was the most difficult.

Like you, I decided/needed to feel that normalcy back in my life and

taking a new job hepled me greatly; however the people I work

understand so very little about what is wrong with me that when I'm

sick it makes working, at times, very stressful. I've struggled with

the trade off...stress vs. normalcy. I know the stress is not good

for my health but the need to feel like I'm a part of society and

that I can try to live a somewhat normal life is winning the battle.

It's a difficult balancing act.

Before I went back to work I volunteered for a few months to make

sure that I could handle being on a schedule and making a daily

commitment without my physical problems being too much of a burden.

That experience gave me the confidence to try working again.

I know you decided not to go back to work right now and it sounds

like you have much support from your husband. I worry about you

feeling isolated or getting depressed from not living a " normal " life

so I would encourage you to get out on your good days if only for a

walk or whatever makes you happy. I hope you don't think I'm being

preachy because that's not my intent. I've been were you are and it's

not easy but I'm glad you listened to your body & your heart because

it's hard being sick and even harder to try act like everything

is " normal " when you know it's not. Does that make sense?

Anyways, I hope you find the answers you are looking for and I wish

you all the best.

Sue