Sjogrens and Social Life

[jordozmom]

Is anyone else having issues with their social life because of Sjogrens?  I am in such turmoil these days and it's driving me crazy! 

When I am feeling good I want to do stuff with my friends/family, but, unfortunately, by the end of the day or the end of the week after working full time I just want to go home and go to bed!  All of my friends are telling me that I am becoming antisocial (and I have to agree) and I try to schedule things or attend things, but honestly three out of four times I end up cancelling because when the time comes I am just too tired.

My evenings and weekends are spent resting and (if I'm lucky) working on laundry, going to the store, etc. and getting ready for the following work week.

I guess this would be a no brainer - you're tired, you have a disease, stay home and rest!  But it is so much more difficult than that!  I feel pressured that I am not doing things - I have friends who would die if they had a weekend with nothing social planned! 

My friends have moved on and are just scheduling stuff without me (which, what are they supposed to do - stay home and do nothing because that's what I'm doing?) and it hurts my feelings, but by the same token I cringe when they ask if I want to do something because I'm afraid I'll end up cancelling anyway.

With my limited energy I would love to be able to "choose" my social life and not work and spend the energy I do have doing something I like with my friends and their families.  But unfortunately I have to work.

In addition, one of my friends has RA and she manages to get involved with her children's softball games, social activies, cook outs, etc.  She has a very different situation than I do, she takes Enbrel which she said helps her with her energy level, she works for her father (very flexible hours and medical leave), and she has lots of family to help her out.  This makes my friends (and me for that matter!) wonder what is wrong with me that I can't do that with a disease, too!

Ugh, it just drives me crazy.  It is not enough to suffer with the physical and emotional issues related to this disease, we have to deal with the social ones, too.

[Pisces24]

I assume you are like a lot of us females - we are great at taking care of everyone except ourselves. Also we figure we "have to do" stuff and waaay overload our plates.

How about just scheduling one night/afternoon as your girls nite out day?
How about a lunch get together or something similar that doesn't take a lot of time and you don't have to run around "like shopping"?

Hey we all have/had friends we ran around with a lot when we were younger. BUT as we got older, spouses, kids and other stuff got in the mix.  Change is inevitable as we age and develop our lives.  Your friends will change too in time.

Some of what you are feeling is the loss of the 'old you".

[valene2009]

i am at the point where i am not working anymore.. couldn't do it..
and i am single... friends always want to fix me up but i cancel all the time.. so i don't date..
this  has really taken over my life the last 3 years and i am 35

[Scottietottie]

Hi 

I don't really have a social life anymore. I have the potential to have one - but I just can't commit. I see friends on a Saturday morning but I need Sundays to sleeeep!  If a staff night out is arranged I always come up witn a reason not to attend. After beinbg at work I just want to collapse in a heap. Sociallising doesn't come into the picture!

Take care - Scottie