Pretty upset

Like most people on here I find it difficult to accept that I have RA. I've tried it out on friends,telling them & not had a good response, you know, I've got a bit of that etc..being their reply My children have never asked me about the illness or how I feel but I thought my husband understood even though he would prefer to pretend that alls well. But yesterday he saw my badly swollen ankles & said you really should get the GP to check them & find out what's causing it. What does he think I've been doing these last couple of yrs. why all the serious meds. I was speechless. Feel so upset & completely on my own. Sorry for the moan x

38 Replies

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  • You have my sympathy. This disease truly is horrid only suffers have any idea of what we feel.To be honest with you think it might be worth getting in touch with your rheumy.Sounds like your meds may need adjusting.

    Don't be sorry for moaning its what we are here for!!xxx

  • Oh no. I think sometimes they just run out of things to say when they tell you to see a doctor.

    Have you showed them the publications from nras? I got a few booklets from them which were helpful and I made them read them, in front of me!

    But it's hard as well to describe something they can't see I think. I suppose just keep reminding them gently and come on here and scream!

    I also took my kids to one of my reviews and my Rheumy nurse at the time was saying, you know your mum needs help? You know she in in Pain etc and you could see them thinking !

    Rest up and keep your feet up and shout them got cups of tea and painkillers xxxxxxx

  • Totally understand where you are coming from and you are perfectly entitled to moan. My children never ask and even if my son sees me hobbling about never offers to take the dog...friends say, you will be better tomorrow and one of the neighbours said he thought I was at it....how come I can walk today without a stick but yesterday had two! ...it does upset me very much. I hate when I say I am exhausted and someone says me too! They cannot even begin to understand the exhaustion that hits for those of us with RA. Another asks every time she calls..how is your RA today?? Same as it was last time you asked! And I know that sounds so ungrateful but just get tired of the whole thing.....tired of having to make excuses for not doing things and just so sad.....I simply no longer wish to even discuss it

    Sorry that was my turn for a moan and to get back to you...you are not on your own and there are many poeple who understand completely . Stay strong, get all the rest you need and start asking at least once for help

    Gentle hugs

  • oh its soooooooooooo true, people just don't want to know, and to be honest I don't think they know how serious it is and so delibitating, my family just look at me struggling to walk or staying in bed with "no comment". so I now just be very kind to myself. wishing you all the best.

  • I agree with what you've just said. I met a so called Friend. She said, how disabled are you, you look find to me. I hate to say it but I choose to walk away rather than explain to someone who lacked empathy.

    You cannot put a value on emotional and physical exhaustion.

  • Sorry to hear you are not having a great time with this alful ra as allanah said get some books on it and give them to your children and hubby to read. My hubby kept forgetting so I gave him the books to read and he's very under standing now hope you feel better soon love Karen x

  • know just how you feel , hate it when people ask how I am , do I tell them and sound like I'm moaning again or say fine when I'm not ? get really angry inside when people moan about aches and pains and tiredness when I tell people I have RA , and my poor old dad asks if I'm better yet at least 3 times a week and then tells me to go back to the docs to get it sorted , bless him. oh no I'm ranting too now.. just to say you're not alone so moan away x

  • I know how you feel. This week I have been getting up to go to work and going to bed almost as soon as I get home. I suppose at least I look ill this week as am very pale, drawn and tired so am getting some support at work! I live on my own so nothing is being done and washing up is piling up as I can't even manage to load the dishwasher! People don't understand the extreme fatigue or why you sometimes need a stick and not others. You're not on your own but it certainly can feel like it. The only groups I've found seem to be during the day so no good if you work. Perhaps you can find some like-minded people in your area?

  • Hi Caza I so know how you feel, my husband is oblivious even though I have told him over and over. my kids at least sort of understand. I am apparently ok as I am still going to work. i have heard him on the phone telling people I am better'. I have given up i just get house cleaners and pay for people to help me. please moan, if we can't do that with others in similar situations and have much needed support then where will we get it. we care!

  • good on you getting someone to do your house chores, I did the same while working.

  • It was until my cleaner moved away so the search is on for another one. :(

  • Hope you are successful soon, these are the things we must do to make life a little easier. all the best

  • yes they are and oh I so hope I can find someone soon......

  • hi I understand before I got ra and someone said they had it I would think we all get joint pain from time to time how wrong could you get people see a foot or knee that's hurt but what goes on inside is another matter and the discomfort and pain not good I am so glad I found this site you will truly be among friends

  • Has your husband gone to rheumy appoints with u? Nit just once, but regularly ? That nurse mentioned above seems to have made an impression. This isn't an easy one

  • Hi cazza, I know how you feel, my swollen ankles give me so much pain, I can not walk for long. My son who is 13 still treats me if all before I got this horrible ra. My life is all turned up side down, finding it all too much.

  • Oh I feel your pain . My arrrrgghh post yesterday was same. I was low as after nine weeks off work not only have my colleagues not visited ot rang I saw on Facebook they wrre meeting up but no invite for me. I cried and was met with hubby saying you do moan all the time.. I now realise that only a fellow sufferer will understand xx im so sorry u feel thr same. . Thank god for this board xxxx

  • Well caza, it's looking like so many of us can relate to what you're saying and it's given a lot a chance to get a bit of their chest. I think we all have someone in our lives that isn't sensitive to our RA, whether that's work, member of our family etc. I've just gone sick from work and over the last few weeks I've been trying to explain to work how unwell I've been feeling, but to get my point across I've almost felt like a moaning hypochondriac as they just don't seem to get it. I know I'm not like that but I think that's how I must've appeared to them. And yay I'm with you someone's mother with having a cleaner, they came yesterday and it makes me feel so much better.

    I think caza what must be so hard for you is the person in your life that doesn't seem to get it is your husband. We forgive our kids and our elderly relatives, but the one person we hope is always behind us supporting us is our partner and I can really see why this is so upsetting for you. I think everyone has come up with some great ideas about taking him along to appointments with you or reading booklets etc. I think a lot of nras booklets are downloadable, so you could possible access them straight away.

    I really hope you get through to him and I hope it's just a case of him not thinking and understanding properly. Some men (I say very tentatively not wishing to upset any men on this site and wishing I could bold up the some), some men, including my husband prefer not to think or worry about things they don't perceive affects them. If you have managed to cope with your RA without it having too much of an impact on him, then It may not really be registering with him. This doesn't mean he doesn't care as I'm sure if he is made to stop and think and understand what's really going on that he will be there for you.

    Sorry I'm really rambling too now. I hope you've done some talking, you're not alone, please let us know how you're getting on, we are all here Rx

  • Sorry to you chaps out there but I have never found men that good at empathy!

    I wonder if it would help to bring your husband to this page, some time, so that he can read about how RA affects people and see that you are not the only one! Maybe he would learn something and become more understanding?

    Keep on letting it all hang out....better than bottling things up. You have loads of us out here who care about you xx

  • Hi all I feel for each of you. I not only find my family don't understand but I don't. The fatigue is the killer. I've always been a very busy person. I looked after grandchildren while daughter moved. I sat in play room. I felt exhausted unable to do anything. It is horrid. Got home after a 3 hour drive. Hubby says we have been invited to wedding in India. I burst into tears India I said I can't make it to swindon. He was astounded and un caring. I shed a little tear I'm not know for crying. I said my world is closing in I am not able to do long journeys, he really doesn't get it. He said I get tired I just stop have half an hours sleep then get on. I don't get this fatigue I don't know how to explain it. Help

  • Hi there I can understand how you feel. Its very hard for anyone to understand and accept how we feel unless they are suffering through this horrid ongoing illness. I'm lucky my mam and dad are very supportive and understanding and help me out everyday. My sons are very caring and they worry about me...but sometimes I feel they may not always ask how I am because then its not there worry. Maybe like your children...I guess i would find it hard if my mam wasn't in good health. Children don't like to see their special mams poorly. Some people will listen to you and generally care. Others will ask you out of nosiness and tell you they have RA...and they are worse than you..I think you just have to try and not get too upset about the negative people. I sometimes still get upset about peoples comments. Easier said than done. Maybe your husband should go to your appointments it may help him understand more. i make sure my hubby's at some of my appointments so he can understand me a little more. I don't know about your husband but mine likes to think I'm fine and nothing's wrong with me and he then starts feeling sorry for himself....I found joining this forum helps me a lot as most people on here are understanding with good support...never feel alone and post on here...you will find it will help you sending you big hugs Nicola :-) let me know how you get on....xxx

  • Sorry Caza I'm late here - I'm away in Edinburgh just now - but lots of sympathy for you. My husband is just the same. What I tell myself is that he's still in denial - and since I have been myself despite RA shouting at me sometimes - what hope of him acknowledging, let alone accepting it? He is a lovely man in so many ways and I'm lucky (25 years married in April!). I'm sure your husband has many redeeming qualities too but it's still very galling/ upsetting when they come out with this sort of stuff I know. Xxx

  • Hi there have a good moan that's what the site is about talking things out and getting support, I have had RA for about five years now and because I work part time people think i must be fit and well and do not get the pain. I put myself through because I want to work. When you hear the word Arthritis people think oh yes you and half the population but they are not aware of the type you have. I am in no way undermining those individuals with common arthritis because that has its own troubles. Sometimes lack of understanding of the illness by non sufferers can be helped by information, arm yourself with some and share it with those with whom you want to understand. Knowledge is power after all and we have to all so understand that our loved one also share the illness and its affects to. Hope your feeling better and any time you want to moan do it free yourself. xxxxxxxxxxx

  • I think that our offspring are the worst culprits as they cannot take in that mum or dad are not well, we should be ok the whole time. My hubby is very supportive and tries to over compensate by putting me in cotton wool if I were to allow it.

    Agree with outsiders though, they just really don't get it, the usual comment that I get is 'Oh I have arthritis as well it doesn't stop me from doing anything and I wear a copper bracelet, why don't you wear one if your that bad!' When I hear that I just give up and walk away.

    I reckon we could have a post with all the comments made to us and not one would be the same with all the different drivel that comes from other people.

  • Dear Caza

    Sorry that you feel alone with RA. It's a difficult disease for other people who do not have it to understand your predicament. I was diagnosed with RA August 2010 and my family and friends still don't know the extent of my problems. I gave my husband and children a short note from the NRAS site about how RA is a chronic, dibilitating disease and at present incurable & gave them a list of my meds. This seemed to give them a bit more of an understanding. I'm lucky I have a very supportive husband. But my life has changed so much because I have little contact with my friends now as I can't do the things I did before and at times it can be quite depressing. Join one of the NRAS groups as they are very supportive. Keep your chin up. I know its hard at times. Best Wishes AngelWings x

  • Hi Caza,

    I hope all the supportive comments and suggestions here have helped you feel less alone. Some have mentioned our publications and website which you can visit at nras.org.uk

    Also our Helpline team are here if you want to talk about it on 0800 298 7650.

    Take care,

    Ruth

    NRAS Digital Media Coordinator

  • Thank you, yes the support & comments have been fantastic. I now know I'm deffinatly not alone. I did try & join before. I will try again, I have bought books on RA but maybe leaflets will be easier to pick up & read if I leave them laying around! Thanks again.

  • I'm in a similar situation and feel sorry to hear about the apparent lack of compassion from your loved ones. When I mentioned passing to my wife (soon to be ex) that I may have psoriatic arthritis she just replied 'my grandmother had that'! I used to play football 3 times a week. When asked 'why am not playing these days' I try to explain but nobody's interested. Even family want you to just to grin and bear it. And i'm beginning to come to terms with it and accept it.

    Your pain maybe greater than mine but there is nothing to gain from feeling sorry for ourselves.

  • I've had RA for 38 years and know exactly where you're coming from. After all these years if anyone asks how I am, I always say 'fine thanks' and change the subject. I would rather do this than listen to them telling me all about their sore thumb or little finger when I am aching and stiff from head to toe. I'm sorry to say it but even though some people don't mean to be ignorant, they are so wrapped up in their own problems and usually minor ailments they are not able to offer any understanding or empathy. I have a close friend who I am able to talk with about my health problems and she understands completely. This is because she has RA also! I have a lovely caring husband who has lived along side me for 30 years and is very understanding because he witnesses the bad days. But I think it's difficult for them too, because they have to live with the disease day to day as our partners and it must be stressful for them at times. I hope I don't sound cynical but this has always been my experience. Pat

  • Having people on here who just 'get it' keeps me sane. My 4 year old seems to be more understanding than my partner, teenage son or mother, and my work, they were worse than useless! I just try to accept that people who don't have it are not in the know, and have decided not to waste my breath, but it is very frustrating. Hope having people in the know to bounce off your thoughts/frustrations on here will help you manage too!

  • agree with all the above comment's people don't get it because we look o.k on the outside! it get's me down even deppresed as i know i'm not the me i used to be and can't do things like before!this site is helpful so glad i joined.at least we can comfort eachother xxx

  • you have my sympathy. I know how you feel. I have had many comments such as 'you look ok ' and 'why is your husband still with you' and 'cripple'. We have lost count of all the hurtful comments over the years from friends who we thought would've understood. I find it difficult to accept I have R.A. Don't feel sorry for moaning we understand. If ever you need a moan or someone to talk to im on facebook. Sarah Jones. take care of yourself.x

  • Dearest Caza, Yes, it is very difficult to live with this disease because I have found people do not understand not only the pain and fatigue, but also the fear and frustration we have. I will tell you this- I admire you greatly trying to cope with RA and raise a family! You can definitely get support on this site. Try not to be too harsh with your husband- I really don't think people can even begin to imagine how this disease takes over your life. I wish you the best!

  • SNAP!! You are not alone. When my daughter said I had not visited her lately and I said I just had not been well enough...she just said oh what's the matter!, they just do not get it! We do though, hug on its way xxx Anne

  • People just have no idea. I'm sorry to read your experiences are similar to mine with friends and family often being unsupportive and when they bleat on about minor coughs, colds and sore throats, sometimes I want to scream! If your ankles are badly swollen you must ask your GP for advice - he can email a request to rheumatology for an urgent appointment as mine has in the past. The only way to help yourself sometimes is to be a pest - I know from personal experience after four years of ups and downs. I'm starting Cimzia soon as methotrexate and plaquenil have not been working well for some time. I have had to really pester because I was in a lot of pain yet, apart from one finger, my joints never looked terribly swollen and my ESR wasn't too high. Rheumatology seemed reluctant to do anything more for me, certainly there was no urgency. Finally, after pleading with the GP to intervene, the hospital sent me for some hand ultrasound scans which involved quite a long wait but these resulted in a detailed report being sent to my rheumatologist by the consultant radiologist. When rheumy saw the evidence of inflammation in joints and tendons, he accepted that it was time to try something else, anti TNFs. What is worrying is that the hand scans were initially done by an ordinary sonographer who was unable to pick up the inflammation - it was only by chance that the consultant radiologist came into the room and took over the procedure, discovering inflammation in my joints and tendons. Always question and if necessary be a nuisance. Good luck and hope you feel better soon.

  • I understand how you feel, my job is quite demanding which means on my feet 8hrs a day and sometimes it takes it toll on my RA and I end up bad but the majority of people don't get it because they can't see it or feel it and they bang on about oh my sore throat or oh I have tooth ache but I think they should realise that mi flare up it's like tooth ache 100 fold but with no rest bite, sorry rant over :)

  • It's interesting to note what it takes for others to take note.... for instance a good friend I see on a very regular basis, so knows what I go through, admitted that her brother, whom she talks to a lot but doesn't see but three or four times a year, has RA. But until she saw how I was etc had not idea what he was putting up with.... she's told me he really appreciates and is grateful for her much fuller understanding now. Also: what a great site this is - I think your absolutely deserved and needed 'moan' really hit us all. If only it would now hit nearer to home! Hopefully it will.

  • I just felt I had to respond to you. Not many people really understand what having RA is like but I have RA and I do know what it is like. The problem is that we look as though nothing is wrong with us most of the time. My family now know when I am struggling but they have had a few years to get used to it. Please don't feel you are on your own with this you are not.

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