Possible to live a normal life again???

[Guest guest]

Hi all. Can I just ask what may be a stupid question. I'm the one who

has been sick for a few years now and has not been diagnosed yet. But

my doc seems to think I may be early stage chronic panc. Anyway, I

live on toast, fat-free cookies, rice, etc etc. I haven't gone out to

eat in 3 years, can't enjoy holiday meals, can't work...and it's been

like a nightmare. So I'm just wondering...is there any chance I will

ever live a normal life again?? It just seems there are no great

outcomes with this and I am someone who has a great deal of aspirations

but am stuck here living at home, not working, not being able to move

to NYC like i want to. Is there ever a good outcome to this as far as

getting better? I'm just quite young and since they haven't even

diagnosed me it seems I will have to go through years more pain and

suffering before any chance getting help.

Like I said, an impossible question but I appreciate your feedback.

K

[Guest guest]

Hi K,

I am not sure if we have met...I just got back from vacation and

have been off the board for almost two weeks.

I can attempt to answer your question based on my experiences.

But I guess the caveat has to be what do you consider

" normal " (?). the reason I point this out is that I went through a lot

of troubled times based on my definition of normal and in order

to come to terms with my lfe, I had to re-define it as it applied to

me, not based on what I wanted it to be or what friends and famly

try to force on me.

For example: my experience with CP and AP occured as a result

of two emergencies surgeries that went wrong. I went into both

surgeries with the expectation that they would relieve the

problem and give me back my former level of health (after

recovery and recuperation). My first four years after these

surgeries I was in constant mental agony (as well as physical)

and spent many useless hours / days, searching for a way to

return to health. Because I was expecting to gain my former life

back, everytime I underwent new diagnostics or procedures I

had unrealistic goals and determined that they were failures.

This attitude harmed me immensely because when I was asked

to evaluate my " improvement " I based it on my life before the

emergency surgeries and not on the immediate affect that these

had on my quality of life. Because I did this, my endoscopist

came to the conclusion that I was not a candidate for treatment. If

I had the realization that my expectations were based on fantasy,

I may have communicated better with him. It was only last winter

that it finally came to me that I was never going to be " cured " from

the damage that was done by those surgeries, that my goals

had to be to re-establish a life based on present capabilities and

limitations (not that I don't have times when I believe this is all

unfair.....I do, believe it, almost every day).

However, once I was able to come to terms with the idea that my

life as I knew it was gone forever, I was able to more realistically

assess my progress and recovery, which led to what I call a new

" normal " life - which is very much changed from my former life

but a life that is fairly functionable.

So to answer your question: in many ways, no, you will never go

back to the life you had before you got CP (or in your case,

symptoms of CP), However, you can adapt and come to terms

with the changes that you need to make to create a new life that

can be just as fulfilling. The problem is, you cannot compare

where you are now in life to where you imagined you would be at

this time. No matter what your state of health is, no-one can do

that and realistically expect life to conform to those imaginations.

I never imagined that I would be a " sick " person when I

contemplated, 10 years ago, my lifes journey. At the same time, I

cannot imagine with any degree of accuracy what my life will be

like ten years from now.

The other thing that I have learned too, after accepting that I will

never be " cured " is that what I feel today isn't what I will feel

tomorrow. There will be good days / weeks and bad days /

weeks and if I am at a lousy 5 today (my bad day scale), doesn' t

mean that tomorrow will be a 6 or a 8. It could very easily be 2 or

a 4. And there are ways that I can make things easier on myself.

That was my big learning project of this summer - how to adapt

my normal activities into my new limitations. And I have to say, it

worked for the most part. For me this was a big thing......because

of my past experiences with sudden and severe illness, I had

come to the belief that if I am a 5 bad today, that it inevitably

meant that tomorrow I would be at a 7 and it would go to a 10

(unbearable) real soon. So I would fret about it and almost

undergo self-fulfilling prophecy. And it worked too, to learn that I

could adapt my activities to my limitations and not feel

inadequate or unable to pull my weight.

Of course we are all different with different degrees of disability

and disease. Some of us can maintain work and some social

activities with no or moderate medication aid and others are

severely disabled with overwhelming life-style changes and

large medication needs. Most of us are inbetween. There is no

doubt that this illness has changed my life significantly, but that

is what happens in life........I wish things were better, I have days

when I just want it all to go away and the " self destruct " button is

very appealing but then, things change again.

I guess that I would sum it up by saying, yes, your life will never

be the way it was, but that there are things that you can do that

can get you to a good quality of life.

From a practical point of view, there are therapies, procedures

and medications that can be done to improve your life. I do not

mean to imply that it is all a mental exercise. I have found that my

medications, my pain doc, my activity modifications, diet

changes and daily activities have made a huge impact on my life.

These have all helped me attain a new " normal " life as

compared to what I had even two years ago. So if I were to

compare myself to where I was two years ago I would say I have

improved tremendously......if I were to compare myself to where I

was 5 years ago, I would say I am a lot sicker. So it just depends

on what yardstick you use to measure yourself against.

l