National Rheumatoid Arthritis Society

Suffering in Silence, I wish there were support groups in my area with people with the same illnesses,

I was wondering how to go about setting up one as I cant find one, a group for people with what I call silent illness, I mean sometimes we look Great on the outside and people dont think we are sick, and I dont feel I can share with my friends, I am tired of trying to explain to people about RA and Fibro and how Exhausting and Painful it is, and they say, Oh yeah, I get a bit of stiffness in my little finger sometimes, WHAT? I need someone to understand what I am going through that maybe I can go have a coffe with, and talk about the Good days as well as the Bad. Any Suggestions
Lisa X

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30 replies

    55Julie
    55Julie

    Hi Lisa

    If you contact NRAS they will be able to help you set up a group. Or you could do it through your local Rheumatology Dept. I am sure Occupational Health would help you too. Give up trying to explain to other people, if you do they don''t understand. Good Luck

    Julie x

    LuckysJoy
    LuckysJoy

    Hi Julie,

    Thank You for your suggestion, I will do that.

    Lisa x

    SarahKate-NRAS
    SarahKate-NRAS

    Hi LuckysJoy

    Sorry about the late response to your blog. We do have local NRAS groups across the country that are run by our volunteers. I'm afraid at the moment the only group we have in Cornwall is based in Plymouth, which I believe is quite a distance from you. If you would like to find out more about how to set up a group in your area please email my colleague Maimie on: maimie@nras.org.uk

    Kind regards

    Sarah Kate
    NRAS Helpline

    LuckysJoy
    LuckysJoy

    Hello Sarah, Thank You for your comment, I do have arrangements for a telecom with Maimie tomorrow (Friday) and Look forward to our discussion, again, Many Thanks

    Lisa

    SarahKate-NRAS
    SarahKate-NRAS

    No problem Lisa, that's great news :)

    paulywoo
    paulywoo

    Hello again Lisa :-) I just replied to your message on my blog when I spotted this. I totally agree with what you're saying about people not understanding. RA is just totally misunderstood by the vast majority of people. I too have nobody to share a coffee with and talk things over but if you ever need someone to listen there will be someone on here with some friendly words of advice. I'm sorry to hear that you lost your beloved cat Lucky. He was obviously very happy to have lived such a long life. I lost my cat Joey about 8 years ago when he was 15 and I still miss him. I also have two dogs who are my substitute children now that my son and daughter have grown up. Good luck with setting up a group in your local area, I'll be interested to hear how it goes.
    Paula x

    paulywoo
    paulywoo

    Sorry I should of said "she" when referring to Lucky. x

    summer
    summer

    Dear Lisa,

    Good luck in the setting up of a support group a great idea, so sorry to hear about your cat, 22 is a grand old age. they are such a comfort I have two, my latest I got as a kitten over 2.5 years ago in the grim dark days when I was first ill to keep me company and give me a focus x

    TildaT
    TildaT

    HI Lisa - just wanted to send you a big cyber hug and tell you that you are not alone. I remember when our first cat was run over and I was so grief stricken for ages because he was my big cuddly beast of a cat. I now have a dog and he's so adored I can't bear to think of anything happening to him - and I have three sons and a husband who feel the same way about him! Perhaps it's time to get yourself another cat - not to replace Lucky but to keep you company in the way that good pets do.

    I can't believe you've had RA for that long without treatment - hope the MTX works well for you - it's worked for me although the RA still creeps about but I am not screaming into my pillow with wrist pain etc anymore at least and have just added a new drug in. MTX does work brilliantly for many here but if it doesn't suit you then there are lots of other drugs that might. Keep coming on here we are a fun lot you will see. And i hope you do managed to get a group going in your area - there must be lots of people out there who would appreciate it too. Tilda x

    LuckysJoy
    LuckysJoy

    Thank You everyone for your comment and support, It made me smile, Have not done that in a while, I will let you know the updates on a support group in my area, As far as Lucky, Well, I made her a promise the day I had to put her to sleep, we had discussed this before that day, But I promised I would never have another cat ( I feel I would resent it, because it is not Lucky, and I would always compare) N pet deserves that, So maybe someday a fish, yeas I know you cant hold a fish, But I hold Luckys stuffed animal Blue, and I light her candle everyday and still talk to her, I would never betray her, I miss her soooo Much xx Thanks again for the support xx Lisa

    Loret-deleted
    Loret-deleted

    Hi Lisa, I fully understand how you feel about your dear pet, Lucky. I lost my dear buddy "Sylvester" aka "Sly" 3 years ago. I was sure I could never replace him. Nor did I. But one day at the grocery store bulletin board, there was a picture of this lovely, long-haired, fluffy , gorgeous female cat with a note saying, "Could someone please adopt me, my family has to move and can't take me with them" I suddenly felt Divine Providence was speaking to me, here was a cat in need of love, and here was I, also in need of love, and having some to give, so I called the number, they brought her over to my home to meet her, and I was in love. There was no way I could tell these nice people that I didn't want her. I held her while they went home to get her things, food, litter box, toys and she was settled in my arms, on my lap when they got back. She has been here ever since. They called her "Cat". I named her "Bridget" . She holds my heart, and she adores me, and looks after me and knows when things are not quite as good as could be. She just needs to be wherever I am. Same chair. I have never forgotten Sly. His picture is framed and on the table with my family gallery, and I see him every day. I still treasure the moments he made me smile, he was a hugger. He wrapped his front paws around my neck and stayed a couple minutes and then was off about the house on his adventures of the day.
    He was 15 and had kidney failure, my daughter-in-law is a Veterinarian, and she kept him hydrated with IVs into his back muscles, for several weeks, but he couldn't last like that.
    Bridget has so enhanced my life, gives me so much joy and love, I again feel as if I could never have another cat if I loose her. But, you know, these precious little critters are also gifts to us, God's way of giving us a love to treasure, and we should not cheat ourselves by declining such a gift.
    Remember the old quote: "It is better to have loved, and lost, than to have never loved at all" Oh so true! My best to you, Loretta

    LuckysJoy
    LuckysJoy

    Dearest Loretta, I had a really bad pain night last night so I just opened my computer at half 12 pm, Your message was the first i read, What a Beautiful story you have shared, i cried, It reminded me of how Lucky used to caress my heart and neck, she was always glued to my chest. I still light her candle every time I wak, it is still early days, I know it will get better step by step, Your story touched me as I used to rehabilitate wildlife when I lived in the states, and with Lucky being in Kidney failure for the last 10 years of her life, I did everything I had to to care for her properly, Prescrip food, meds, so much I spent, but I never begrudged her the best even if I went without. I am touched by your blessing of Gods gist to you with Bridget, And the quote you wrote at the end WOW, I have said that in life so many times, I need to hear your lovely words Thank you so much. All the best to you as well in Your journey, and may you feel angels whenever you are hurting or alone.
    Lisa X

    Loret-deleted
    Loret-deleted

    Thank you, Lisa. I am glad you read my comment just when you needed it. You will always have Lucky with you, in your mind and heart. Just give it time, then take the chance to love another of God's little critters, they will always give back so much love to you. They enrich our lives so much.
    When I am feeling really wiped out and exhausted, I would not want to be alone, without my most understanding and sympathetic little friend. I hope someday soon, you will be able to open your heart and let another gift from God in, to comfort you. God bless. Loretta

    Loret-deleted
    Loret-deleted

    Let it be a cat, dogs are too much for us to handle, though I love the ones I know, dearly. Just can't take care of them the way they need. Cats just need love, food and water, in that order :)

    whitedog
    whitedog

    I identify with your post as I'm feeling totally fed up at the moment. I hardly socialise - bar walking the dog - and I work as a dog walker/petsitter so feel like that's all I ever do. My feet are killing me at the moment, I've put on weight, my right eye always looks swollen due to a disease so I feel self conscious. On top of that I'm heading into peri menopause I think, and also wondering if the thyroid pills really do work as I'm tired all the time. It's like a vicious circle of not socialising much but feeling too depressed/tired/in pain to do anything about it. Bleurgghhh. :(

    LuckysJoy
    LuckysJoy

    You must be quite strong, i dont know how you do it working, I mean, I have been blessed that the "Powers that Be" recognize just how bad I am and am not capable of standing or sitting for any length of time, I was originally diagnosed 21 years ago in the States where I lived with a Positive RA Factor,

    But they never addressed it, Kind of just Blew it off, So RA has worked its evil on my body for 19 years, and I had to stop working just over a year ago, Which I think was just in time, so now I can try to take care of me for a change, I have been so independent and a hard worker my whole life, So this is very difficult.

    As far as socializing, I am just not up to it, On my so called good days I try to do bits around my little flat, I had to take on a small studio with a sep kitchen and toilet/shower, which has helped so much, It is more manageable and that helps so much. I wish you all the best and if you ever want to chat or leave a comment, I am here. Go go out much :(

    patty
    patty

    Hi All, having a local support group is a good idea; are there any in existence already? I too have no one to talk to, even among my own family and there must be many of us out there. Sorry, I dont get on here much though keep abreast of topics etc so probably miss topics like this.

    LuckysJoy
    LuckysJoy

    Hi Patty I am new to this Blog, But I thought it would be the best place to find answers to the questions that swirl in my head, This is all so overwhelming, I will say, It has helped so much having the support and replies, on here, and not the snub looks i get when people see what they consider a healthy looking woman with a Pink trolly for my shopping, and a flower walking stick LOl
    Keep coming back, It has helped me so far x

    whitedog
    whitedog

    Hi Lisa

    Not sure about strong - just battling on, really! I was quite fit 10 years ago and cycled everywhere, had a job as a delivery postie and enjoyed getting out and about. But I've battled depression for years and seem to spend more time doing things alone than with others. Since being diagnosed with inflammatory arthritis a few years ago and also with a couple of other diseases in the last decade, I've found everything a struggle. MTX worked wonders for me at first but I'm feeling the pain coming back now. I sometimes wonder if it's the diseases that make you so tired - or all the different meds.

    So sorry about the loss of your cat. I used to have two and was devastated to lose them. I now have my dog who is my best friend and who is with me most of the time. She's 7 now and I dread the day I lose her. It's just me and her, really.

    I thought it might be nice if there was a chat room on here so people could interact instantly, until a time there may be local social groups organised.

    Roz x

    LuckysJoy
    LuckysJoy

    Maybe That could be a suggestion to the website It may be something they take into consideration. Thanks for your thoughts on Lucky, I will never have another mammal, I just feel I would compare, resent, and hurt because I would always want it to be her, So I made her a promise, So maybe someday a fish or bird, and I will just cuddle her stuffed animal Blue

    Lisa x

    megant
    megant

    Hi,
    I was diagnosed in Feb, keep looking for a support group, email the NRAS, ask anybody !! I eventually found one about 12 miles from where I live, I went for the first time a couple of weeks ago, completely showed myself up when I walked in, I just burst into tears !!!! But finding that group has helped me SO much, having people like me to talk to. A lady at the group told me that nobody will understand you unless they have this desease and that you shouldn't expect them to, just expect them to be there for when you need them. I keep telling myself that "I don't live with this desease, it lives with me, and fits in around what I want to do".
    Try to keep your chin up, my support group is in Northampton, if you live anywhere near ???
    Alison
    x

    LuckysJoy
    LuckysJoy

    Thanks Alison, I am so Happy to hear for you that you have been blessed enough to have found a group, I live all the way down in St Ives, Cornwall Is your group a private group, Or do you know if they have suggestions for others, how to go about getting a group going, I wish I knew of somewhere around here, But there are places I will check and people still to talk to will keep you updated if I find something down this way..
    I am glad you have been blessed to find People Like Us, What a Relief :)

    patty
    patty

    Thanks to you all, will do a bit of digging and see if anything crops up. I am all the way up here in Cumbria, the back of beyond. Pity we couldnt get together, what a support group that would be!! Sorry about the cat Lisa, I have two doggies and would be heartbroke if anything happened to them. X

    LuckysJoy
    LuckysJoy

    Awww Thanks Patty Very sweet of you to mention Lucky, I really DO MISS her, I did do some research today into finding a group and have contacted disability Cornwall, they will be getting back, and someone else has contacted me regarding this as well, Will keep everyone posted to see if anything gets organized in This area

    Lisa x

    whitedog
    whitedog

    St Ives is a beautiful place - how long have you lived there?
    I've got friends in Cornwall. When I lived in London I went down a lot but now I'm back in Leeds not so much. I'm hoping to get down either at the end of May or end of Sept when I've taken time off work. One friend is in Newquay - used to live in Bude - and another, who I used to share a flat with in London, has recently got into a Housing Assoc place in Portscatho so looking forward to seeing that. I've done a lot of the north coast from Bude downwards but don't know the Roseland so well. I sometimes think it'd be nice to move down there but don't know if I ever will. It's warmer than Yorkshire though!

    LuckysJoy
    LuckysJoy

    Definately warmer than Yorkshire, I was born in Lancs but moved at an early age to the States, when I was young, I lost my mum, so my dad sent me either to Nans up North or Nan in PZ, and spend many years in St, Ives, So late in life

    I decided this is where I wanted to move home to and grow old . About 5 years ago for good, i brought Lucky with me it was her second trip here with me, Then I lost her just Last month, So It has been difficult since she has gone/
    My Life is a Really long drawn out story but I know now, that all this new treatment has been scary for me, Just took my MTX and I open those pills like its a really scary thing, I know last week (my first dose) the next day, I had a terrible day,Dont know if it was the fibro or The Ra or what, but i was freezing, sweating, nausea, exhausted, and I had creepy crawlie feelings all over my body I just kept rubbing and Crying, so I pray I dont go through that again tom, will let you know X

    whitedog
    whitedog

    Sounds awful. :(

    I first took MTX as part of a clinical trial about 3 years ago. I don't remember having too many side effects from it to be honest, but I have had the feeling of skin crawling that you describe. I never thought it might be anything to do with the meds. And I do go from hot to cold but think that's me entering peri menopause. But my thyroid blood tests are due soon and I think I also feel the cold because of that.
    I'm not very good at keeping notes of my symptoms or even records of when I need blood tests etc. I tend to just deal with whatever comes as it does so and throw down whatever meds they give me..
    All the different symptoms, though, you never know what's causing it, do you if you have several diseases? I was getting terrible indigestion so they put me on Lansoprazole. That has been the worst side effect of the MTX for me, I think.

    Hope you're feeling better today. x

    rokia
    rokia

    Hi Lucky
    What area are you in? I am also interesed in setting a group up. I'm in nw9 where are you?

    LuckysJoy
    LuckysJoy

    TR26 area in St.Ives, I have spoke to someone with NRAS and they said the closest to me was Plymouth, i am going to speak to my GP to get in with occupational therapy and community health services through my GP surgery to see what they can do to help, Good luck with your venture

    Lisa

    nancy66
    nancy66

    i just started a support group with the local wellness center. Look up arthritis introspective, kevin purcell, he will help you, he is fantastic !!!!

    i often get upset when people have a pain and complain of a sore finger, i say give me one sore joint, and i will be in heaven. but pain is pain i know.

    nancy

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