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Date: 14.03.2011
From: Gill

Subject: Feeling Lonely

I was diagonosed with RA 18 months ago and am on anti tnf injections and a cocktail of pills.I am only in my 40s with a lovely family and i still , inspite ,of trying to be positive, feel, scared, isolated, churned up, anxious and very tired. I am also waiting for surgery to have my left ankle fused and pinned which will bring with it financial worries. I find all benefit agencies awful with responses to RA.I am still trying to work as a supply teacher on good days.I find that the level of understanding of RA from the general public and parts of my extended family is non existent.I did give them leaflets to read. My husband only really began to understand when my consultant had an indepth chat with him. Do other people feel as lonley as i do at times.
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Date: 14.03.2011
From: karen

Subject: Re: Feeling Lonely

Hi Gill

I was dx with ra last year, Im 35 with an 8 year old son & I too feel quite lonely

My friends have stopped asking me out as Im not supposed to drink too much so thats great for a start.

My parents are great at the emergency side of it (when I have a flare up & find it hard to get out of bed) which I am very grateful for.

Thing is they dont seem to understand all the daily aches, pains & difficulties I have.

I am on meds but I still feel tired, ache & inflamed sometimes & I feel like they just expect me to be ok now Im on meds.

Sorry to hear you are feeling this way, the financial worries cant help either!

People dont seem to understand ra do they, Im always told Im too young to have it arent I, then the whole explaining it starts, Ive given up now as those that need to know do.

All the best for your surgery, Karen x
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Date: 14.03.2011
From: cookie

Subject: Re: Feeling Lonely

Hi gill sorry to hear your feeling low i was dx with ra 17 years ago at the age of 27 i can remember feeling all of those things you have to remember its early days and in many ways your going through the grieving process for your old life these feelings are completly normal. People can try to understand but the reality is they cant fully unless they are going or have been through it.my philosophy is i have ra and i will live my life despite it. I have 2 girls age 8&3 i work full time have holidays and time with my friends. Somedays i feel why me but for the most part i just try to get on with things. Not always easy i know but my ra isnt going away i refuse to let it dictate my life xx
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Date: 14.03.2011
From: davina

Subject: Re: Feeling Lonely

hi gill yes i have also found that being ill is lonely. i am 30 yrs old and worked as a waitress but had to stop. so since then my friends at work stopped asking me out for lunch ect.. and i take y son to play groups but i feel people are judging and stay away as much. my partner is very good but he doesn't realise how bored i get doing not a lot all day and don;t get me started on money problems. lol

i know people don't understand ra at all like karen said they always say, your to young or i'm so sorry for you or isn't it an old persons problem, do i look old? lol

hope all goes well t/c davina.x
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Date: 14.03.2011
From: kazzie

Subject: Re: Feeling Lonely

i totally agree with everything only today i was thinkin how then hell would i cope without my partner i cant drive now as my hands are so swelled cant lift my shoulders up so he has to get me dressed ect .and i was so worring myself today thinkin what if i was alone as we have a 4 yera old and am 36 ,but my friends come round and know am always here as cant go far and it does get you down as ive losing intrest in lots of stuff .and i get the oh am sorry your to young ect ect .so know how everyone feels and its good to talk to people who understands x
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Date: 24.03.2011
From: scorpio42

Subject: Re: Feeling Lonely

hi thort id add myself to the lonely list!! im 42 3 kids and on my own i was diagnosed with ra last year,i dont think ive accepted it either i dont want to be stuk with ra im on sulfax4 and meth tho i stopped taking meth coz side effects they werent happy id stopped and want me to restart but they dont have live with awful side effects im trying look after kids work and cope with ra i dont have wide circle friends and rarely see anyone outside work.i was one of the many who thort it was an older persons disease...how wrong was i.....
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Date: 24.03.2011
From: kazzie

Subject: Re: Feeling Lonely

hi scorpio 42 sending a hug but no its not much use when i cant help but know how your feeling i have had it nearly 2 years now and only kinda of accepting it now but hate tellin strangers if they see me struggling walking ect .if ever want to message me when down feel free as it helps to talk to someone who understands xx
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Date: 24.03.2011
From: Gaynor

Subject: Re: Feeling Lonely

Hey all. Being disabled can be a very lonely place. I count myself as lucky. My partner is disabled too and understands completely. But .. I only got married 5 years ago, and before that I was very isolated. I guess it's hard for people to understand when they have never experienced how down it can make you when you are in constant pain. I was very glad to find this forum. It's just good to have people to bounce things off - who maybe have walked down the same road (or should I say "limped" down the same road!). Hang in there guys. Keep touching base here. There really are people who understand here and I have been helped a lot.
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Date: 27.03.2011
From: scorpio42

Subject: Re: Feeling Lonely

hi kazzie thanks for your kind message,been down past few days my hands and fingers seemed to have puffed up and my ankles and knees are swelled bit today so am feeling sorry for myself hate this time of year coz with the ra i am always hot anyway it just increases more during summer months your lucky you have a partner,my family helps me be lost without them
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Date: 27.03.2011
From: kay

Subject: Re: Feeling Lonely

hi haven't posted on here for a while,i know exactly how all u feel i'm 44 & was diagnosed with ra about 7yrs ago maybe more loose track of time.anyway i 2 am tired all the time & fed up with not being able 2 do the stuff i used 2 do i don't know what i'd do if i hadn't got my fab hubby but other than him no 1 else seems 2 fully understand what we go through as its not an illness that u can see unless ur avin a bad flare up.if anyone wants 2 keep in touch feel free 2 contact me we all need friends we can talk 2.
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Date: 27.03.2011
From: scorpio42

Subject: Re: Feeling Lonely

hi kay,know exactly how your feeling i always feel im constantly moaning and your always concious people will tire of you so tend keep alot to yourself i have 3 kids work and am on my own my parents are my rock and help me so much,only recently found this site it helps so muh to talk
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Date: 27.03.2011
From: Lynda

Subject: Re: Feeling Lonely

I know just how you feel i have had RA for 9 yrs my mother had it she started when i was a teenager and to be very honest i didn't realise just how much she suffered or how much pain she must have been in, i feel so ashamed at not being as helpfull as i could have been when i was 16 yrs all i remember is if we planned a trip out it was cancelled most of the time as she didn't feel up to it . As i got older i did everything for Her and never thought twice about it just wanted to help and take her out in her wheelchair so she didn't get too depressed about being stuck in the house all day
The shoe is on the other foot now i feel as if i am such a bore and burden to my family my Daughter wanted me to go on a long weekend away with her before the wedding in 4 weeks time but i am just not up to it been in flare up for months i am dredding the wedding day it's going to be such a long day to cope with life is such a Bi**h
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Date: 28.03.2011
From: scorpio42

Subject: Re: Feeling Lonely

hi Lynda im sure your daughter understands,try and take things extra easy on the run up to the wedding and on the actual day try and sit down take rest where u can.my flare up has lasted months too im sick of it and an only be worse with warmer weather coming.my kids dont understand and why shud they...they are only young i just try do wot i can and on days i cant....i ask for help or dont do it.
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Date: 01.04.2011
From: Gaynor

Subject: Re: Feeling Lonely

Hey Gill - just wondering how you are doing today? I hope things are going better for you.
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Date: 01.04.2011
From: marlene

Subject: Re: Feeling Lonely

Lynda i went to my sons wedding high on tramadol all day for the pain. My rhuemy guy asked me do you drink a lot i said with a fed up attitude no not even at my sons wedding. His reply soon had me smiling .Well lucky you most mums are so drunk they dont remember the day. I had to laugh it reminded me there is always somehing positive coming from negative. I really wish you well and hope you enjoy the day. Fingers crossed. XX
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Date: 02.04.2011
From: Jonny

Subject: Re: Feeling Lonely

Hey - Me too! It seem know one understands anything about the condition. It's so annoying. People in work think i'm a joker and lazy because of my condition (I thought I was at first) but i'm not! I cant help being in constant pain and living with immense tridness. My mates don't understand. I dont even think my fiancee does either. It so frustrating! GRRRR! BUT... There ain't much we can do so, chin up and get on with it! P.S Enbrel rocks!
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Date: 02.04.2011
From: cookie

Subject: Re: Feeling Lonely

Lol im with you jonny positive thinking as much as possible. Ive had this for 17 years so am furthur along the path than some in accepting that this is here and i have to live my life despite it and not let it rule my life x
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Date: 02.04.2011
From: marlene

Subject: Re: Feeling Lonely

Positive thinking is good for all. I call each step my hurdle as i clear one im ready for the next. I cant jump over them but i have a good old try. A few tears as well. I tell myself off and just say hey!!!! there are lots worse off than you.Cookie i fully agree live your life despite it all. Keep smiling
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Date: 03.04.2011
From: cookie

Subject: Re: Feeling Lonely

Well said marlene x
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Date: 03.04.2011
From: Tom H

Subject: Re: Feeling Lonely

Does anyone know if there are any support groups?
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