Re Activity and Pain...again

[Guest guest]

Hi sandy,

Sorry you had a scare but glad you kept out of the hospital. Hope

you'll be able to enjoy the garden soon.

I have learnt from bitter experience what too much energy expenditure

can do to my CP. At the same time, we want to keep as fit as possible,

don't we? One of those difficult balancing acts!

Take care and get well again soon,

Fliss (UK)

[Guest guest]

I can really relate when it comes to over doing it. Yet, my day's of

over doing it are like carrying to much to the laundry room at one

time. I can only take parts to the laundry room at a time. I remember

the days before all of this when I would meet up with some friends and

go for a very vigourous 10 mile mountain bike ride through the woods.

Man those were the days. Being out in nature. I can not even take

those long drives in the country any more. So many good times back then.

Yet, there are trade off's. My relationship with my parents is totally

awsome. While other friend that have found that I was sick and could

not be around me any more, one girl friend especially. I don't know

what is about others. Yet, my mom and dad have really come through.

Walt

[Guest guest]

Walt,

Hey there! Your post caught my eye. We seem to be in similar

situations, as far as friends and family go.

I have been extremely sick these last 8 months. I was living alone

when the terrors began. I would get so sick that I would pass out

from the pain and/or vomitting. When the passing out began, I was

very freaked out about my personal safety. Luckily, the 1st 2 times

that happened, I was on the phone with my parents. Luckily, my mom

and dad jumped into their car and came to get me, thankfully, I was

coherent enought to get up and unlock the door. From there we went

straight to the hospital. I never was well enough for me to go back

to work and/or have my own place. The months of May and June were

spent in the hospital. When my lease ended, my parents had to go and

pack up my apartment, because I was laid up at the hospital. I am

very grateful for my parents, I would be so isolated, much more

depressed and hopeless, etc. if it weren't for them. My parents are

just two of the most selfless, incredible people I know. They have to

sit and watch me ride this rollercoaster. A lot of the time we don't

know whether to laugh or cry. We are all feeling so alone,

frustrated, confused, mad, angry, happy that I am not in the

hospital. Happy that I can at least go to one or two places during

the day.

I haven't had much of a life lately, add the word social and whoa! you

can strike that word off the list. I mean, I am suppossed to be

living it up, I don't have kids, I am not married, etc. This is the

time that I should be out there dating, traveling, going dancing. It

is such a big effort for me to even go to the grocery store. I am

completely scared to be alone, because I just don't know what could

trigger an attack. Therefore, I don't drive. I miss having a good

time. I miss having things to look forward to.

I know I am babbling, I am sorry. I am feeling so down lately and I

guess I am just taking out on this poor post.

About the friends aspect...I have lost the majority of my friends over

the last 8 months. The one that hurts and baffles me the most is a

girl that I met at college, we've been friends ever since. Now, we

live in different cities. I gradually noticed her not calling me or

calling me back when I'd leave messages. Now, she has fallen off the

face of the earth. I know she had a break from work, because she

works in the school system. I have no idea why she couldn't just pick

up the phone and let me know she is thinking of me. It wasn't even

like she had to come, b/c she lives here. I mean she gets off easy,

just a little phone call once in a while.

When you are down and out, we need a push in the direction of

hopefulness, healthyness, and happiness.

People are so quick to pick up the phone and sprout off trival

problems. I know that I am no stranger to doing that, but not to

someone who is going through real life problems. Other people tell

me, maybe your friends are scared of what is going on with me.?! Give

me a break! We aren't kids anymore and bad things do happen. That is

the worse time to lose friends. Am I right or am I being selfish?

There was a point that I was confined to laying in the bed or on the

couch b/c I was hooked up to a machine for my J-tube feedings. One

friend would call me, because everyone else was working at that time

in the morning. On several occassions my very close " friend " would

call me and whine about her trival b---s--t problems, relationship

stuff in which she was blowing things out of proprtion. I am thinking

in my head, you have got to be kidding me! She did it several times

and when it was time for me to talk, she conviently had to go. But

funny that she has all this time to talk to me on the phone, but can't

even come to see me in the hospital? I mean out of the 70 or 80 days

I was in the hospital, she couldn't find one day that would suit her

schedule? She doesn't have any restraints at work, because she is a

real estate agent.

On a positive note, one of my close friends lives in Alabama and she

drove up one afternoon to sit with me while I was in the hospital.

Walt, I hope things start to change for you! Thanks for listening to

me!

I know it is scary to see people , but suck it up, we are adults now.

I just never thought the people that I loved being around, couldn't

even pick up the f---in' phone.

> I can really relate when it comes to over doing it. Yet, my day's of

> over doing it are like carrying to much to the laundry room at one

> time. I can only take parts to the laundry room at a time. I

remember

> the days before all of this when I would meet up with some friends

and

> go for a very vigourous 10 mile mountain bike ride through the woods.

> Man those were the days. Being out in nature. I can not even take

> those long drives in the country any more. So many good times back

then.

> Yet, there are trade off's. My relationship with my parents is

totally

> awsome. While other friend that have found that I was sick and could

> not be around me any more, one girl friend especially. I don't know

> what is about others. Yet, my mom and dad have really come through.

>

> Walt

[Guest guest]

Hi, I read your post and it reminded me when I was in the hospital for

my distal pancreatectomy in Jan 1999. I had a roommate who was a close

friend before he moved in share my apartment. He drove me to the

hospital for ER visits numerous times. When I was in for 3 weeks he

never called me or stopped by, but the worst thing is...I saw him and

his girlfriend walk past my room in the hospital. That means he made

an effort to come visit, but couldn't find the room and left. To me

this was worse than not visiting at all. A few months later I found

out that the hospital cafeteria makes chicken fingers with some

special sauce, he asked if I wanted to go to the hospital and eat a

great cheap dinner. I asked how he found out about it and his response

was, " back when I came to visit you in the hospital after your

operation " . I said to him that you never came to visit me. He insisted

I must have been out of it and don't remember. I then told him that I

saw him and his girlfriend walk past my room but never came in. His

face turned red with embarrassment and I haven't spoken to him or seen

him since he moved in with his g/f a few days later. I guess as my

grandfather used to say, " The world needs a--holes too " applies to

him...Jim