limiting activities

[Guest guest]

I actually sent this to my liver support group, but it really applies to all my

groups, regardless of which chronic illness(es) you are dealing with.

It is often hard for anyone doesn't either have a chronic illness themselves or

a loved one who deals with a chronic illness to understand the fatigue that so

often goes along with chronic illness. Those of us who do deal with this know

the price we often pay for overdoing it. That price can range anywhere from a

day of being more tired or having more pain than normal to a long hospital stay.

Often people take things too personally when you turn down an invitation. At

first I felt like I had to explain myself. However, I often think when you try

to explain yourself, it only makes things worse. The people who feel you owe

them an explanation when you turn down a social invitation will never understand

anyway, so why waste your energy trying to explain things. The people who do

truly love and care for you and have some understanding of what dealing with a

chronic illness entails would never ask for or expect an explanation. They

immediately understand that it is nothing personal when you must decline. They

also understand that even if you must decline 99 times out of 100, you still

appreciate them thinking of you and the invitation. They understand that you

may very well still want them to extend the invitation so that the 1 time out of

100 when you are feeling well and have the energy, you can participate in social

activities, outings, or just life in general.

There will always be those who just cannot understand why we can sometimes

manage a day full of activities and other times even a 30 minute trip to Walmart

is more than we can handle. I've had a friend tell me on several occasions that

'it's not like you really have to do anything, it's just a movie'

or 'it's just going to dinner'

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

This was the friend that I really felt like I had to try and explain myself to.

I finally quit trying. If I don't feel like accepting an invitation, I simply

say no and leave it at that. I don't owe anyone an explanation! This friend

doesn't seem to get it that family activities come ahead of simple social

activities. I can't help that. My family (and extended family) do come first.

When my daughter is home from college, I may push myself a bit harder so that

I'm up to dinner out, a short shopping trip with my daughter, etc. If it's

Father's Day, Mother's Day, a family member's birthday, etc., I may also push

myself a little more than I would if it was simply an invitation to dinner with

my parents, sis, etc.

I really do consider this friend and her husband and kids almost family. We

include them in many family get togethers. I pushed myself to see to it that I

was at her little boy's birthday party and that I brought my nephew (they are

both 7 and only 3 days apart and they both play so wonderfully together that it

is really fun to have the two of them together) to the party because my

brother-in-law was out of town on a business trip and sis had already committed

to a scuba diving class. I thoroughly enjoyed the birthday party (as did my

nephew) but by the time I'd spent 4 hours outside at a kids' party, I was

pooped. You know the drill -helping to see the kids got fed, intercepting

disagreements, just typical birthday party stuff. My friend was not at all

happy that I didn't want to go out for dinner and a movie that evening. This

was one of the times that she told me 'it's not like you have to do anything

physical, it's just dinner and a movie, you just have to sit there.' I told her

I was tired, my nephew was tired, and the only place I wanted to sit was curled

up in my recliner with my jammies on and my electric throw to keep me warm!

Now, mind you, in addition to just dealing with the fatigue of several chronic

illnesses, I'd had my nephew the previous night, also. We had been at my

friend's house til midnight. After we got home, my nephew had some sort of

allergic reaction and had problems breathing. (my sis had him tested for

allergies after this and we found he is very allergic to bees and fire ants. we

think he probably got bit by fire ants or something because he had welts all

over his legs the next day. He now has to have an epi-pen at all times as they

said the reactions will likely be worse the next time.) He was fine after I got

him to sit up and gave him benadryl. However, I was concerned so I laid with

him and watched cartoons til after 3 in the morning. It was around 4 a.m. when

I got in my bed and I probably only slept a couple of hours.

Anyway, this was one of the last times that I bothered trying to explain why I

didn't want to accept an invitation. Once I quit trying to explain myself, my

friend finally got the hint and now when I decline she just accepts it and

doesn't press for a reason or try to tell me why I ought to be able to do

whatever it is she wants me to do.

My whole point to this is that if other people want to think you are selfish for

saving your energy for the things that are most important to you and your loved

ones, then so be it. Perhaps if they walked a week in our shoes, they might

begin to get it. Until then, quit worrying about what they think! Some people

get it and others just never will!

Hope this finds everyone having a good weekend and able to do some of the things

you'd like to do with family and/or friends.

W

[Guest guest]

Amen you said it well! Everybody ought to print this and save

it. I get so tired of trying to explain things. I also like the

comments about the 1 time in 100 that you might be able to

participate in things and still would like to be asked.

I made a comment to my mom one time about someone in the family

leaving my family out and not inviting us to a big function and my

own mom made the comment that " you are always sick anyway! " At that

point I decided screw em all!

Thanks for saying what many of us already know!

Kaye

-- In pancreatitis , " Weston " <karenw@p...>

wrote:

> I actually sent this to my liver support group, but it really

applies to all my groups, regardless of which chronic illness(es)

you are dealing with.

>

> It is often hard for anyone doesn't either have a chronic illness

themselves or a loved one who deals with a chronic illness to

understand the fatigue that so often goes along with chronic

illness. Those of us who do deal with this know the price we often

pay for overdoing it. That price can range anywhere from a day of

being more tired or having more pain than normal to a long hospital

stay. Often people take things too personally when you turn down an

invitation. At first I felt like I had to explain myself. However,

I often think when you try to explain yourself, it only makes things

worse. The people who feel you owe them an explanation when you

turn down a social invitation will never understand anyway, so why

waste your energy trying to explain things. The people who do truly

love and care for you and have some understanding of what dealing

with a chronic illness entails would never ask for or expect an

explanation. They immediately understand that it is nothing

personal when you must decline. They also understand that even if

you must decline 99 times out of 100, you still appreciate them

thinking of you and the invitation. They understand that you may

very well still want them to extend the invitation so that the 1

time out of 100 when you are feeling well and have the energy, you

can participate in social activities, outings, or just life in

general.

>

> There will always be those who just cannot understand why we can

sometimes manage a day full of activities and other times even a 30

minute trip to Walmart is more than we can handle. I've had a

friend tell me on several occasions that

> 'it's not like you really have to do anything, it's just a movie'

> or 'it's just going to dinner'

> or 'sit around at my house just the same as you can at yours'.

> This was the friend that I really felt like I had to try and

explain myself to.

>

> I finally quit trying. If I don't feel like accepting an

invitation, I simply say no and leave it at that. I don't owe

anyone an explanation! This friend doesn't seem to get it that

family activities come ahead of simple social activities. I can't

help that. My family (and extended family) do come first. When my

daughter is home from college, I may push myself a bit harder so

that I'm up to dinner out, a short shopping trip with my daughter,

etc. If it's Father's Day, Mother's Day, a family member's

birthday, etc., I may also push myself a little more than I would if

it was simply an invitation to dinner with my parents, sis, etc.

>

> I really do consider this friend and her husband and kids almost

family. We include them in many family get togethers. I pushed

myself to see to it that I was at her little boy's birthday party

and that I brought my nephew (they are both 7 and only 3 days apart

and they both play so wonderfully together that it is really fun to

have the two of them together) to the party because my brother-in-

law was out of town on a business trip and sis had already committed

to a scuba diving class. I thoroughly enjoyed the birthday party

(as did my nephew) but by the time I'd spent 4 hours outside at a

kids' party, I was pooped. You know the drill -helping to see the

kids got fed, intercepting disagreements, just typical birthday

party stuff. My friend was not at all happy that I didn't want to

go out for dinner and a movie that evening. This was one of the

times that she told me 'it's not like you have to do anything

physical, it's just dinner and a movie, you just have to sit

there.' I told her I was tired, my nephew was tired, and the only

place I wanted to sit was curled up in my recliner with my jammies

on and my electric throw to keep me warm! Now, mind you, in

addition to just dealing with the fatigue of several chronic

illnesses, I'd had my nephew the previous night, also. We had been

at my friend's house til midnight. After we got home, my nephew had

some sort of allergic reaction and had problems breathing. (my sis

had him tested for allergies after this and we found he is very

allergic to bees and fire ants. we think he probably got bit by

fire ants or something because he had welts all over his legs the

next day. He now has to have an epi-pen at all times as they said

the reactions will likely be worse the next time.) He was fine

after I got him to sit up and gave him benadryl. However, I was

concerned so I laid with him and watched cartoons til after 3 in the

morning. It was around 4 a.m. when I got in my bed and I probably

only slept a couple of hours.

>

> Anyway, this was one of the last times that I bothered trying to

explain why I didn't want to accept an invitation. Once I quit

trying to explain myself, my friend finally got the hint and now

when I decline she just accepts it and doesn't press for a reason or

try to tell me why I ought to be able to do whatever it is she wants

me to do.

>

> My whole point to this is that if other people want to think you

are selfish for saving your energy for the things that are most

important to you and your loved ones, then so be it. Perhaps if

they walked a week in our shoes, they might begin to get it. Until

then, quit worrying about what they think! Some people get it and

others just never will!

>

> Hope this finds everyone having a good weekend and able to do some

of the things you'd like to do with family and/or friends.

>

> W

>

>