I'm waiting for my first rheumatologist appointment in 2 weeks time and was just wondering what some of you 'old hands' say when people ask how you are.
My husband tries his best to be sympathetic but I have already noticed his eyes glazing over when I tell him how I feel so I told him I'd only reply to the 'how r u feeling' question with positive responses if I could. He's not an overly sympathetic man....we've already had one public debate about the situation because I wanted to talk about what it might mean for the future and he wanted to wait for an official diagnosis.
We've been married for nearly 25 years and I fear this is ruining our marriage already!
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notarunner23
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It's a difficult one to answer as people do get weary of hearing all the ailments of RD ! But it is important to talk and get an understanding of what's happening to you. This forum is a blessing as you can air concerns and people understand how you feel.
My partner is very long suffering and an excellent listener, so I am lucky ! I also have a friend diagnosed a few months before me with RD, whom I meet regularly and share things with. As for others I tend to say somethung like I'm on new drugs and waiting to see how I get on. Or fair to middling, which tends to raise a smile. Mist people don't want to know more and often give comments like 'oh I've got rheumatics', 'I've got a sore knee' , I try to avoid these conversations as I find them difficult.
NRAS runs support groups too which you may find useful.
Thanks Mmrr. It's so lovely to hear someone else's perspective.
I had a neighbour pop round for a cuppa the other day and when I told her how I was feeling she listed all her ailments and told me proudly she wasn't going to take her pains to the GP. I just though bigger fool you, but I'll be wary of sharing with her again.
Unfortunately it is a common type of response. I tend to call my condition rheumatoid disease rather than rheumatoid arthritis, many do as it can avoid the sore knee type conversation. That's not to say a sore knee is a problem, but it is not a systemic illness.
I have given up on telling people how I feel because no one seems to realise what Rheumatoid arthritisis, is , I am sick of hearing my Granny had that. No she didn’t have Rheumatoid, I wish the NHS would change the name of RA. Luckily I have a really supportive family so thT a big bonus.
Try not to worry about your husbands responses, it's difficult for everyone involved when you're first diagnosed, and maybe once you both have a better idea of the disease then you will find that talking about it becomes a lot easier. It takes time to get used to the idea, for yourself and for the ones closest to you.
I usually just reply honestly when people ask how I am, they usually show concern and we can often have a laugh about it, I've found that humour is the best ice breaker when you don't know the person well.
When my wife or close family ask how I am, I tell honestly, but try to keep my venting to a minimum, as I know how difficult it is to hear that a loved one is in pain, and how frustrating it is that you can do nothing to really help. My wife also has a chronic pain illness and so we both keep our venting to a minimum, otherwise we'd both be utterly fed-up
I know the eyes glazing over so well! My husband is great at driving me to and attending appointments with me but I try not to mention any symptoms at home on a daily basis as I know he's bored with it all (so am I😂). When friends/family ask I just say I'm ok as I've learnt the hard way that they are not really interested in the detail however polite they are in asking! I think this is a lonely disease and this forum is a great place to gain information, support, advice and understanding which may not be forthcoming elsewhere.
I usually say well not dead yet ! my husband has a great sense of humour so its really not a problem although once I did point out don't ask me if you don't really want to know! I find most people think I look well which is a puzzle as how am I supposed to look ?
I don't go in for the half glass empty idea really as mine is half full because I might take a while longer and also have kidney failure which makes things much worse but am looking forward to the arrival of the first grandchild and hopefully a new medication begining to work so will feel a lot better. I was in remission for 4 years and its only down to kidney issues that I've not had an RA meds for 6 months so I hope to get back into remisssion and a near normal life asap.
I was a bit like you at the start, and wanting to discuss the future as the disease hit me hard, and we’d recently bought a new house to renovate and I was just thinking about wheelchairs! Anyway, 10 years on I can safely say that had I made any plans then, they would have been rubbish. Especially at the start you have to take in one step at a time, even tho’ it is hugely frustrating. So I’m with your husband on this one - sorry!
But, and it’s a big but, this disease is very hard on relationships. So you do somehow need to did out that sympathetic side of your husband, as it can be lonely otherwise. Perhaps try to involve him in the practical side? Self help is very important, so eating well, taking exercise and so on. So enlist his aid in looking at how to clean up your life perhaps?
Thank you all so much for your comments. They are really helpful. Hubby is a engineer by trade so he likes to fix things (including me!), so I will definitely try to give him practical things that he can do to make life easier. I've already said I want to declutter over the next few weeks because once the kids break up from school and uni for the summer the mess will spiral if I have to take it easy for a few days.
I'll see what else I can put him in charge of!
I agree with your husband to wait until you’ve seen the rheumatologist or even until after you have a diagnosis as you may not get a diagnosis straight away. No point worrying and planning for a future that may not happen the way you plan. Everyone’s story of RD is different and so will yours be.
I have given up saying how I really am other than to a few people I know really want to know. Others don’t really understand and I can’t be bothered wasting my energy trying to get them to after all this time. Sorry I sound like a miserable git, I’m not really, I just get on with life as best I can. Let us know how you get on with your appointment. We are interested 😊
I can understand your need to talk about possible outcomes, plans of campaign etc because I like to get my worrying done in good time and work out solutions to all the 'what if's'. However, Himself is also an engineer and, like your husband, needs a solid established problem to fix. So, I talk and he listens 'cos he's good like that and when we get a diagnosis we can cope with it between us. That's why this forum is so great. It's filled with people who 'get it' unlike so many others. If anyone asks after my health I tend to say something like 'oh you know, staggering along - as you do' because most don't really want to know. Close family get an edited version of the truth. Hang on in there, notarunner23, you're not alone
Haha that's it. I like to explore all the possible outcomes and weigh up the probabilities . He likes to get a clear set of instructions and follow them through until the problem is solved!
We'll get there one-way or another and I promise to come back and update you when I've seen the rheumy.
I couldnt agree more with what has been said. I choose what I say to whom, however sometimes just need to get it off my chest and thats where this forum is so good. I understand completely about having a husband that wants to 'fix you' my husband has always been mr fix it and it saddens him he cant fix me, however now ive learnt to accept help, thats part of fixing. Like you said about decluttering. One thing I would suggest is that he comes with you into your appointments then he gets the chance to ask questions. I find that helps my oh, even if im not always impressed with what he asks it helps him. We are the lucky ones that have oh to support us, however that can bring its challenges. Take care of yourself and keep in touch. There will be someone who knows how you feel on here. 🙂
If I’m honest, I usually pretend I’m fine. My husband knows, my rheumy, my parents and my closest friends. Everyone else I generally put on a face and say nothing. I’m not sure it’s the best approach. Sometimes if I’m wearing a support and someone asks what it’s for, I tell them I hurt myself. I don’t know why I’m so reluctant to admit when I’m struggling.
Hi, I have a couple of friends who live with pain so I can be totally honest with them and have a good moan. Other friends I just have stock answers for as they’re not interested in the finer details!
I was out for a walk with a friend the other day and altho I was limping I wasn’t in that much pain. She remarked that I seemed to be very sore but I said that it was actually a good day!
My husband is very supportive but I know it’s hard for him, it’s a big change for us both.
On the whole although people ask how you are, i think it’s just something people say and I don’t think anyone - not even friends - is all that interested.
If I ever complain about something my other half doesn’t really acknowledge it and manages to respond with something that he has that is similar but worse so I don’t bother now.
I don’t know whether it is that he can’t cope with the idea that I might have something serious so he is ‘head in the sand’ or that he just a selfish so and so. We’ve been married 46 years and he’s always been the same, his ‘illness’ is always more important than mine - or that’s how it seems to me!
I’m sure you realise by others posts that this is a common problem. My other half is constantly nagging me to take it easy which sometimes I don’t appreciate. I’m made of tough stuff so denial is sometimes a problem with me lol but I don’t get the ‘told you so’ I’m lucky that I’ve got a truly supportive husband. The older generation don’t understand at all I’ve given up trying to explain how I feel so generally say ‘same sh** different day’ if they ask. To me it’s blooming obvious how I am if I can barely get out of the chair and grimace when trying to walk. Finding support from good friends or even just ranting on the forum is the best way. I’m also really lucky to have a fabulous friend with a major heart condition so we’ve come to an understanding that we don’t always moan laugh things off if we can but also if we are worried or really having a bad time we can talk to each other about it with no judgment.
When I was first diagnosed & waiting for a drug that suited me ...I got so fed up with people being either over the top with sympathy or telling me "well it's only Arthritisi"......I wrote out a fictitious list..." Oh I can't move my arm today & my big toe is swollen & do you think this rash is normal,?" They soon stopped asking when I read it to them!
Get the picture? RA/RD ..whatever you call it is not pleasant, but these days it's not necessarily life changing - unless you let it be. We have to take charge of it, & not let it take over our lives. Your husband is probably really, really worried & just doesn't understand how scared you probably are of being diagnosed.
Having been married for 25 Years you probably know by now men are usually only interested in their own health! Man flu comes to mind.
So if sadly you are diagnosed when you see the rheumatologist...you will be prescribed something that suits you......& you will just get on with your life as normal ......take any meds prescribed.....& please don't read Dr Google & think you will get every sided effect mentioned....because odds on you won't.
Many people on here, me included, have been diagnosed 20/30 years.....& we are still here getting on with our lives. I'm in the sunshine in Tenerife right now....enjoying life even though I have have had RA for a very long time.
Yes.....When you have a flare it's rotten.....but these days there are so many drugs available, you will probably be one of the lucky ones & be well controlled very early on.
Think about it....would you want a running commentary from your husband on his latest aches & pains? Of course you would 't, so do try to accept what your rheumy tells you & carry on as normally as you can. Your husband probably has no idea of the difference between OA & RA ,so try to pick up some leaflets from the rheumatology department, shove them under his nose, & then answer any questions & the forget it. I know that won't be easy, but accepting the diagnosis & being determined to cope to the very best of your ability is the best way to stop your husband's eyes glazing over.
We all have to make the best of it & sometimes it's really, really hard....but there is very definitely a good life to live with RA...so stop worrying...& remember most people are happy if you just say " Fine today" they really don't want chapter & verse!
Greetings! With my partner, I found it particularly helpful incommunicating my current status (pain and overall well-being) on a scale of 1-10 with 10 being a Day in Hell (as I imagine it nyway, with no pain relief from anything I've tried) and 1 being I'm feeling pretty great, let's take advantage of this to do something!
He's like most men I've worked with-they are fixers. They like to mend, solve, fix. If they can't, they feel incapable or worse. (I designed and built homes for 15 years with lots of men..)
Something as simple as this system eliminates the long drawn out, energy and time wasting conversation.
He likes it as he understands what a 3 allows me to do vs a 7. The longer we use it, the more in sync we are it leads to more understanding, less disappointment, more realistic expectations.
Let's face it, no one really knows our pain. I am very adept at hiding my pain. Yet, I rather like it that way. I don't want to spend my life talking about my health, I want to spent it living as well as possible.
Today, for example, I woke up in terrible pain in my hands and my right hip. I knew it was going to be a slower morning. But, I have projects for these types of days. I can work on my tablet sitting in a comfy chair or chat with you all and learn more of this. I dont feel guilty or non-productive if I can enhance my families lives in some way.
Blimey! after reading the less than complimentary posts about men in this thread, then being a bloke I'm just a little fretful of posting. Still there are exceptions to the rule I suppose. Besides, I would think it will be interesting for you fems to hear from a bloke like myself.
Anyway, besides my fully supportive angel of a wife, I have a couple of close friends who are genuinely interested in how I'm getting on so I keep them updated when I see them for coffee once a week. I keep it as brief as I can though, which does require discipline as it can be easy to get carried away on times, plus I make sure to add some humour as is done with many of my posts here even if most people here don't quite get it! I have another close friend who never fails to ask how I am, but I tend not to say much to him because if I do tell him something like I'm having a lung function test next week, then you can bet your bottom dollar that he'd have forgotten all about it by the next day if not before....I still love him though...in a friends sort of way that is! If I bump into lesser friends or acquaintances on the bus or wherever and they ask how I am, then I tend to keep things brief with the usual replies of - "I'm ok thanks", "I'm still soldiering on" or "I'm bearing up under the strain". If I bump into an old friend who I haven't seen for many moons, or someone who seems genuinely interested with how I am, coz let's face it I'm not exactly a picture of health, then I will give them a rundown on what's happening with me.
Hello notarunner23, when it comes to speaking with the Rheumatologist it is way different than speaking to a loved one. I have had this disease for approx 5years now and my wife is a great listener, however, be HONEST when speaking with the doctor. If you feel like crap tell them why. YOU ARE YOUR OWN BEST ADVOCATE! Doctors hear almost everything they need to in the first couple of sentences. When the ask "how are you today?" And you say "I am alright" this is all they hear. If you were to say everything hurts, or feeling horrible etc, then the doctor will listen to everything. I am speaking from experience here. I used to so "doing sort of OK today" and not getting any help. Started to say "like a piece of crap, how are you?" Then the doctor really started to listen and come up with a plan on how to make me feel better.
I finally accepted that people have no concept of what I got couln't care what they think or just nod head like they know it all I laugh and say do you have it ? you will never ever understand until you have it
At the early stage, I needed support as I was in great pain hence talked to other to get help from people around too. Unfortunately, it was hard for others to feel how I felt and no one likes to listen to continuous complaint of pain and suffering.
When I told my mother of my pain, she would tell me that she also had it as her hand was in pain too. So I could not make her understand that RA was something different and it was an auto immune problem. No luck on this.
Then when I was in recovering very well after a very short period of treatment, my rheumy arranged for me to share my experience of recovery during RA Days celebration. My daughter was with me then. After the sharing, she saw so many RA patients who were really in great pain and all of them talked about how painful they were and they could not live their normal life and so on. Thereafter, my daughter became very much more understanding of my condition. She always hold my hands and look at my joints carefully and touch them to ask if my joints are okay those days. Now, she treats me like just a very normal mother who never had the RA problem before as I am in good health now. However, she will always carry heavy thing for me to avoid any issue.
Therefore, my advice is to bring your family members with you for your appointment or during any RA sharing session, it helps a lot. I always go to share my experience when my rheumy requests me to do so. They told me that they will have more sharing sessions in future as they could see it does help RA patients to see hope. I told my rheumy that I would be ready to help them around if they organize any sharing session in future.
What a great question. My hubby is ready willing able not always empathetic, not his forte.
I usually say same ol' then he knows I'm in pain.
He tries very hard to help doing things I don't need not noticing what I do need lol.
Any few months a go I copied & pasted basic care suggestions for a site that had what carers of RA can do. Then emailed it to him along with the link to the page.
It's almost impossible to understand condition looking in from the outside it has such random symptoms.
My main response is it's a blood immune disorder, so effects, can destroy small joints in the body. To treat it I need chemo injections once a week. I get pain from the condition and side effects from the injection. Hey ho
Hang in it takes a while for our loved ones to get their head round their losing the person they married, but that is in sickness & health side of it eh?
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Still there are exceptions to the rule I suppose. 
Besides, I would think it will be interesting for you fems to hear from a bloke like myself. 
If I bump into lesser friends or acquaintances on the bus or wherever and they ask how I am, then I tend to keep things brief with the usual replies of - "I'm ok thanks", "I'm still soldiering on" or "I'm bearing up under the strain". If I bump into an old friend who I haven't seen for many moons, or someone who seems genuinely interested with how I am, coz let's face it I'm not exactly a picture of health, then I will give them a rundown on what's happening with me.
how many people do you know ??
What do you think?
Ladies, what do you wear when your knees are bad?
What would you do?
