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Date: 09.07.2011
From: Sian

Subject: Having a LIFE !!

Hi,

Had R.A for a couple of years now and never ever spoke to anyone apart from my consultant and my nurse about it. I don't know why but I am so embarrassed about having it. I am 30 years young and I'm trying to stay that way, although the Martini has been neglected. I am unsure with my moutains of meds it would be a good idea to continue drinking like I am a student.

Anyway about having a life .. I used to be at the gym five days a week and was and now in my own living room at times a dancer. I think more than anything I am having to let go of the old me and my old ( amazing ) life an embraise a new one .... not so active! Have you noticed they dont tell you about not being able to get into all those postions you love ( sorry for lowering the tone its my s.o.h ).

So what do we do ? we take our meds, we try to keep active but most of all we must continue to live and I mean live .. fully !! If you wake up feeling stiff in pain and unwell then maybe tomorrow will be a good day but still take what positives you can from today!! motivation speech over ... how was it for you ? ahh
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Date: 09.07.2011
From: marlene

Subject: Re: Having a LIFE !!

I absolutely agree with you, write a list if you need to so many positives and maybe so few negatives. Life is for living, after taking in the shock of it all dont dwell on what you cant do try to rethink what you can do. I only have one big negative not being able to pick up my new grandaughter now she is a year old. But i struggle to get on the floor and strugggle to get up,but 10mins playing on the floor makes her happy so i am happy. There is always some way of getting around things maybe not exactly what you want but life never was that perfect before Arthur.Life is what you make it. I was happy before and i am now happy after even with my unwanted friend arthur. Can i just say dont be embarrased about anything, you sound an amazing person. Take Care.
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Date: 09.07.2011
From: Sian

Subject: Re: Having a LIFE !!

Life before Arthur ... I love it!!

Thank you very much Marlene, some very wise words.
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Date: 10.07.2011
From: mads

Subject: Re: Having a LIFE !!

Sian, i read your post and thought "God thats what i need! A Life!"
i have become one of those people who when asked how they are, actually answer with a long description of symptons and all the medication that i am currently taking. I thought the eye rolling was in sympathy with my plight but i know full well, it is the dreaded "why did i ask" look and how quickly can i get away without appearing rude shuffle.
Oh no!!!! This writing is brining back so many memories, how could i have let myself go so much?
Right i definetly need a life, even a fantasy one will do, so that i have something other than my disease, my symptons, my research, my rheumy team, my medication and its side effects, my gp, my bloods, my physio, the ot and every conversation i have ever had with each one of them.
Yes, it is official i have lost the art of entertaining and animating conversation (i'm a gemini and i love to talk so think how many long hours my listeners had to bear)I am the ra bore.
I have followed people out of rooms listing further problems.
My first challenge this week will be to talk about the weather and not mention the theories of how temperature can impact the joints. Next week it could be diet!!! Though that may be too difficult, so many diet theories abound. Any offers of possible non medical conversations will be gratefully received. i am determined to throw off this BORE tag!!!!!
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Date: 10.07.2011
From: Sian

Subject: Re: Having a LIFE !!

Hi Mads,

We all deal with things in our own way .. I see no point in telling others who can not be empathetic and they struggle to deal with the fact there is no ' fix it ' solution. Remember people get affraid of what the don't understand. I will keep my RA talk for here or my RA team. I remind myself that RA is a part of me and not that I am a part of it.

Do me one favour, think about you before RA think about the things/interests you still have or can do. Give something back, do some volunteering that your able to, this will mean you can meet new people who see you and not ' that person with RA ' plus you will build your confidence and social life.

All of us are alive it is so important to live for what little time we have on this earth.
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