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Date: 07.03.2014
From: Denise

Subject: Socialising and RA

Hi folks

I am really having a bad week this week despite being on the tail end of a steroids course ... shoulders, knee, lower back a complete nightmare ... was it the little bit of light gardening I did earlier in the week.

But, I had arranged to go out with a friend last night so I went despite the fact that all I really wanted to do was slouch in front of the tv. So bump into someone I hadn't seen in a while. Oh how are you he says, I'm fine I replied !!!!!! Ha, ha I was sitting in the local theatre in agony.

It is this side of RA that really gets to me. Don't make too many plans too far ahead cos you just don't know how you are going to feel from day to day and then you sort of cover it up cos it is too complicated to explain when you look fine on the outside.

Did enjoy the evening though.
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Date: 07.03.2014
From: marlene

Subject: Re: Socialising and RA

Hi Denise, well done for going out regardless. It is hard to have a social life but my Motto worth the pain. We do seem to tell every one we are fine and I know why. We think people will think we are miserable and whinging. I have taken the time to explain to people why some days I am touchy or bad tempered or maybe a bit emotional and I find they understand. If they don't know they can't help. I do only tell people that really matter to me.
Your last sentence did enjoy the evening though proves a point. You are not going to let your RA stop you from having a life and fair play to you.
Take care and Chin up. X
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Date: 07.03.2014
From: chris

Subject: Re: Socialising and RA

Well done for climbing the mountain and getting out!

I hear you on the making plans, that really gets to me. When people around me are making plans i hear myself saying 'if i can'. Such a negative view point i feel, for them and me.
Anyone got a technique of dealing with plans?

All the best,
Chris
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Date: 07.03.2014
From: Bsk

Subject: Re: Socialising and RA

I have a friend who always says she'll 'try.' I quite like that as it implies intent.
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Date: 10.03.2014
From: Eve

Subject: Re: Socialising and RA

It is difficult, I used to be so active, always out and about doing all kinds of things but it's dwindled down to nothing and I now only tend to see people if I make an effort to get to them, save one very good friend.

I am just so exhausted after work and trying to rest up on weekends (I'm on my own so all on me to do everything) and my head just doesn't have the capacity for company and it's hard to talk about much the only stuff I've done outside work is usually hospital related stuff.

I'm hoping things will get better but it can become a difficult midset I think, especially when people just don't understand the nature of the disease.
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Date: 11.03.2014
From: Linda

Subject: Re: Socialising and RA

Check out the spoon theory Denise. Butyoudontlooksick.com. It was written by someone who has Lupus, but it could apply to anyone who has an autoimmune disease.

It means, I think, that healthy people have an endless amount of spoons to use each day. Those of us with AI diseases have a limited amount. Each task equals a spoon. We have to plan everything we do which includes a night out.
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Date: 11.03.2014
From: Denise

Subject: Re: Socialising and RA

Oh yep Linda, I think I have read this. Wasn't it the way the girl with lupus explained it to her friend? Very interesting.
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Date: 12.03.2014
From: Linda

Subject: Re: Socialising and RA

Every time my family ask me to do something I don't feel up to doing Denise, I quickly say spoon theory.
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Date: 13.03.2014
From: Eve

Subject: Re: Socialising and RA

I love the spoons analogy, one of the best things I've ever seen to help describe things like chronic fatigue to people.
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Date: 14.03.2014
From: Denise

Subject: Re: Socialising and RA

Meant to be going to the Ideal Home Exhibition today. Hm, could easily say bugger it but ..... Don't have any spoons in reserve so hoping I can borrow from tomorrow and keep my fingers crossed !!! Might have helped if I hadn't stood on a stone end of last week and jarred all the hip and knee. Where's the painkillers !!!
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