Re: Still's and sleep Keilia

[Guest guest]

Hi Keilia,

that stinks that they are your family. I think it's not so bad for me

that they are my in-laws. Still not nice, and can be very stressful, but my

family has been OK. My parents are both long deceased, and my sister has

Lupus and Fibro and hypothyroid (I have Stills and hypothyroid) so she really

honestly knows what I'm going through and believes me and gets it. My

extended family I'm not 100% sure what they think, but they are are none of

them that nearby so I only see them all on weddings & funerals. We do a

family reunion every July 4th so I look forward to that, however, my cousins,

who used to invite me to every holiday have long ago stopped asking. I

can't say that I blame them. I would say yes when invited, then you know how

it goes, the day of I'd be sick and unable to go. Or I'd be feeling crappy

and want to go, but know that if I didn't stay home and rest myself, that

I'd likely be calling out of work the next day.....

I was out of work for 18 months and now I'm just newly back to a part time

job of only 18 hours per week, but I still can't say yes to every

invitation and risk not feeling well enough to get to the job I committed to.

I don't know if they talked behind my back and would say how I stopped

coming to things, or if they were annoyed that I cancelled at last minute.....

but to my face they were fine, so I have to take that at face value. I

did eventually start telling them " I'd love to come, but can I give you my

answer last minute as I never know how I'm going to feel " and that worked

for them just fine, but it seemed to cause me so much stress! I HATED

having to make that call that I wasn't up to it.... so in a wierd way, when

they stopped inviting, it was easier on me.... but I do miss the connection.

We e-mail now and then, but we used to be so close! I fell like this

stupid disease takes a lot more from us than people realize!

xo

-Jo

[Guest guest]

greetings keilia and jo,

 

i know what you guys mean. i live in the same city as my mother, her 4 remaining

brothers, and a bushel of cousins.  i' lucky if i see them 1 or 2 times a

year.  i have developed many friends over the years during better pain times. 

each time things go down again, so does the friend count.  they'll call up and

invite me to get together with them to go out and do something and most often i

have to decline.  i call them and invite them to come over for coffee and chit

chat or to watch a movie. they usually have something else planned.

 

i think a lot of it is that they are unconfortable.  the best of them

understand that we are in pain and there is no easy fix. they feel helpless and

don't know what to do.  so they just slowly back away.  the worst of

them,probably never really friends to begin with, think that it cant be as bad

as we say and just can't get it.  they are usually the first to dissapear. 

and that is probably for the best.  right now i have two great friends.  they

give a call a couple of times a week to see if i feel up to company.  if yea,

then they come over. we have coffee and chat.  the one friend alwasys manages

to slip in a 'do you need to go anywhere like grocery store'.  the other friend

will very sneakily look around the apt to see if i need any thing like a

lightbulb changed or my trash taken out.  he doesn't ask, he knows i'll just

give anexcuse and say i'm planning on doing it tommarow.  instead he just does

it.  they have been life savers to

me. 

 

find those special people in your life and hold on to them.  these are the kind

of people who will stay with us forever no matter how far away life may take up

 

blessings

elizabeth

Subject: Re: Still's and sleep Keilia

To: Stillsdisease

Date: Friday, January 29, 2010, 11:35 PM

 

Hi Keilia,

that stinks that they are your family. I think it's not so bad for me

that they are my in-laws. Still not nice, and can be very stressful, but my

family has been OK. My parents are both long deceased, and my sister has

Lupus and Fibro and hypothyroid (I have Stills and hypothyroid) so she really

honestly knows what I'm going through and believes me and gets it. My

extended family I'm not 100% sure what they think, but they are are none of

them that nearby so I only see them all on weddings & funerals. We do a

family reunion every July 4th so I look forward to that, however, my cousins,

who used to invite me to every holiday have long ago stopped asking. I

can't say that I blame them. I would say yes when invited, then you know how

it goes, the day of I'd be sick and unable to go. Or I'd be feeling crappy

and want to go, but know that if I didn't stay home and rest myself, that

I'd likely be calling out of work the next day.....

I was out of work for 18 months and now I'm just newly back to a part time

job of only 18 hours per week, but I still can't say yes to every

invitation and risk not feeling well enough to get to the job I committed to.

I don't know if they talked behind my back and would say how I stopped

coming to things, or if they were annoyed that I cancelled at last minute.....

but to my face they were fine, so I have to take that at face value. I

did eventually start telling them " I'd love to come, but can I give you my

answer last minute as I never know how I'm going to feel " and that worked

for them just fine, but it seemed to cause me so much stress! I HATED

having to make that call that I wasn't up to it.... so in a wierd way, when

they stopped inviting, it was easier on me.... but I do miss the connection.

We e-mail now and then, but we used to be so close! I fell like this

stupid disease takes a lot more from us than people realize!

xo

-Jo