My instinct is to say 'Not bad thanks, and you? but I'm thinking that's a bit negative and people will get fed up of asking, putting me down as a moaner. But I'd be lying to say something like 'Great/fine/well/good thanks' although I think that's the only answer you're allowed to that question! Some some of my family think I'm faking and skiving off working saying things like 'You were OK on holiday/a particular day etc". Am I supposed to act miserable all the time to show I'm ill instead of just trying to do the best I can to enjoy life, keep mobile and stop myself getting depressed? Ideas welcome please.
What do you say when people ask 'How are you?' - PMRGCAuk
What do you say when people ask 'How are you?'
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tangocharlie
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I thankfully can usually say I am making progress but still a way to go. You can choose your friends and if they are being negative pay more attention to those who are supportive. With family it is more difficult but if they don’t believe you tell them to look on the net and see an objective description of the illness. I am so thankful for my family as they are brilliant, I have to ‘report’ on what’s app every day as they all live far away, and give them the low down ,if I am doing too much! I get a row! Boot on the other foot now! I hope you can feel more positive and take care of yourself.
tangocharlie• in reply to
I like that, thanks. I like it in reverse too, a long way to go, but I'm making progress. Friends are being fantastic, I'm lucky and blessed, some family members are great, others less so. But she's a miserable cow anyway 
I usually say, " I don't really know how I am; how about you?
tangocharlie• in reply to
The description on the NHS website is something about stiffness, and the replies from friends and family are along the lines 'we're all getting old and stiff' or 'you need to do more exercise'. I say yes in moderation, but you don't walk on a sprained ankle do you? I think we just have to learn to accept that only those who have been there actually 'get it'.
Hello tangocharlie - "How are you ?" I answer with : 'Staggerin along, not fallen down yet TG, as am on the rat poison and might bleed if I did (fall down) !
Then ... 'Yes. Was pretty good on (such-an-such a day) but not so good today. Darn nuisance this weird and wunnerful disease, innit ? Good job it aint catching ! But how are you ? ...'
Then, when feeling 'totally' orf, use a pair of crutches !
Ha ha, thanks yes I've used 'Still alive' I pointed out I had to go back on steroids to go on holiday and then got the sneering reply 'So why don't you just take steroids then?' to which I had to point out the horrendous weight gain and side effects that go with the miracle of Preds. I like the idea of quickly changing the subject back to them.
They don't HAVE to mean weight gain - honestly.
You’re right. I lost 30 pounds since starting pred 3 years ago - food just tastes odd and it made me lose my appetite. I never pick up a salt shaker, so no issue with swelling either. On a lower daily dose of pred now, but been on much higher doses in past. My doctor said lots of his patients don’t experience weight gain while on pred, so it’s not a given.
I’ve no willpower when it comes to cutting down on carbs 😟
So pleased I'm not the only one !
No definely not I don’t gorge but I am not a lover of vegetables which is a problem and salads, well I can get enthusiastic with them.
It is amazing how your tastes change though - even my husband is in hospital and is eating - and enjoying - food he would never have even tried before! At home he will only eat meat (preferably bacon or ham) and chips!
My problem exactly, I'm not A big meat eater , don't particularly like veg and for some reason although I love salad at the moment it doesn't like me !
Yes my problem too especially lettuce.
I used to be quite boring with vegetables thinking I ought to have some with each meal but since experimenting with the AIP and BSD diets have learned to love big plates of them. It's easy in summer, I'm eating loads of asparagus, broccoli, kale (massage in coconut oil and bake in oven and it tastes like crispy seaweed), butternut squash 'spagetti', cauliflower rice, green beans, spinach, nomato sauce (made with beetroot rather than tomato). If you cook new waxy potatoes and then eat them cold they become low GI/low starch so sneaking them in occasionally.
I put on loads in the first few months and am still struggling to lose it again now even though I'm eating the Blood Sugar diet way. I've got rid of the moon face though.
I know having a moon face is not the be all and end all of this condition and it’s consequences and I shouldn’t worry about it but it really worries the most. It makes me feel quite miserable sometimes
It did me too, but it does go eventually. One of my friend said it made me look jolly!
Thank you for giving me hope. What is the Blood Sugar diet you have tried and also you mentioned AIP diet can you enlighten me? I’m not excessively over weight but it’s gone on my stomach area and face. Glad it’s working for you
DorsetLadyPMRGCAuk volunteer
Hi,
I think we’re likely to respond as you, from most people it’s just a greeting, like “hello”, but for others who do actually care, you can be a bit more honest. Not too much information or they become disinterested!
My usual noncommittal reply (re my arthritis) is “have been better, have been worse” or “could be better, could be worse” or “had better days”. On a really bad day, then there’s a few expletives! If they ask more, then I tell them!
I used to say ‘ a bit up and down today’ or ‘better than yesterday’ or ‘ struggling along’ .
Thankfully it’s mostly in the past as I’m off the steroids since February but it was a long three and a half years. I still have stiffness but is it my age now or some remnants of the PMR or steroids?
It was a hard time with nursing my husband, a hip replacement, Achilles heel trouble, my husband’s death last year, his sisters death three months after, and then my brother had a very major operation.
But I’m still standing! I play in a ukulele group and sing in a Choir to charities. My family and friends are very supportive and I try to keep myself busy; what else can one do. I found the help and advice from the advisors on this forum so wonderful.
So I say to all you PMR sufferers; it’s very hard going through all the difficulties that PMR/ GCA throw at you but things do get better in time. I have learned to pace myself better and try not to get stressed these days.
Best wishes to all of you.
Don't do stress anymore! Been there, got the T shirt.
Great thing a ukulele. Mine got me through my fathers illness and death and my Mother's dementia. Since PMR raised it's ugly head I haven't been able to maintain a regular rhythm and my right arm tires very quickly. I played happy sad and mad, my husband always knew how I felt. I miss it , it's a great release.. Lets hope I get my rhythm back soon!
How fab! I play in a Ukelele group for charity - such a fun and rewarding activity.
I have played the Uke with as many as 120 players and it is great fun. When we all get going in the same direction it is like running with a herd of horses, so much energy!
Uke on!
Funny enough I was thinking of taking up the ukelele but I've never done anything musical before, can't read music etc so think it's asking a bit much what with my brain fog. I'm trying to revive my ruty German and Spanish and keep getting confused.
I usually say 'good in bits' to answer those not interested and those who care know. If I'm really rubbish I tell them 'I woke up this morning and lots of people didn't'. Reminds me and them I haven't kicked the bucket so things could be a lot worse 🤣
Similar to my ‘I’m still aching so I must be alive’.
A colleague of my husband used to say that when you were over 40 if you woke in the morning and nothing hurt you must be dead...
I sometimes say, well at least I`m on my feet today....hopefully tomorrow the same, if they say, oh, it`s that bad is it?....yes, some days housebound, others who knows no two days the same.....and truthfully that is sometimes over the years how it has been for me with flares etc....
One thing though I have learnt, some people will never "get" it..........
very true!
What a good question! I often ask myself this and you're getting some smart answers. I hate ' How are you? ' . It has become the standard greeting for a lot of people and in most cases they are not really interested. My problem is that I tend to take things literally! Thanks for asking it might teach me some diplomacy .
It's the way the language works. Remember how people greeted each other with "How do you do?" back in our salad days? It meant nothing more than "Hello". Same with "How are you?" these days, except we feel we need to answer with "Fine" or some such banality.
Hi Charlie, people ask how we are out of politeness rather than genuine concern so I prefer to keep it short. 'Still on the steroids' usually stops the eyes glazing over. Nothing trivial about those tiny white tablets.
My bugbear is when people say "You look so well". I could actually hit people who say that (if I had the energy), I find that hard to answer.
“Fair to Bl.....y awful, and you?
My usual response is ‘Still taking the tablets’. That allows them to be disinterested, ask another question, or conclude finally, that yes I am only a few minutes from the men in white coats coming to take me away.
Morning charlie, yes, it`s an often commented on saying. I`d suppose it`s a point of conversation and the reply " not too bad thank you " is a case of not burdening a person with your negative situation, if you have one. That said, there are those who wear a poor medical condition like a badge and talking point.
When I'm walking my involuntary Frankenstein walk, people think I've been involved in an accident, I just say oh no it's only rhuematism, it'll go eventually. I've found if you start explaining they either know someone else with it, give you daft advice (get an excercise bike, the latest) or regale you with their own aches and pains making you stand far longer than your body can take!
'See you later' is another banality, when in most cases you're
clearly not.
They won't understand whatever you say or do. Who could unless they have experienced it ? My family don't understand either 🙄 You can always send them a link from a symptoms page on PMR ?
Like Churchill said " Never give up, Never Never Never," take your fun when you can get it, that's how I try to live. X
A couple of weeks ago I called for my preds at the pharmacy attached to the surgery. The second in command (a very formidable lady) shouted from the back "And how are you"?. I answered very firmly "I'm very well thank you" (which was a lie) and she said "that is the correct answer" and marched off!
Brilliant!
"OK in parts" is my usual response with a cheery smile or, if feeling slightly grumpy, no smile; doesn't seem to encourage prolonged dialogue on my demeanour.
I can remember a long time ago when I was visiting an elderly friend in a retirement complex, she said to me “ whatever you do, don’t ask ‘how are you’ to her other fellow residents or you will be there for ages while they tell you all their health problems”
I’ve always remembered that and so I either say ‘good morning ‘ or ‘ hallo’ depending on how well I know them. I have every sympathy with people who are ill but one can hear their problems too often if you’re not careful.
It’s been interesting to hear how others here have dealt with this.
'Don't ask' or 'how long have you got to listen'.
I've done that in the past but I don't want to get a a state where people don't ask anymore because I'm being negative. It's hard isn't it.
"You look so well" my heart sinks I usual say "I am getting there slowly". If only they knew. I am more frank with close friends and family to the point of sarcasm the answer to the " look well" question I give is usually "yep steroids will do that for you". Another of my favorites is when asked about my mobility is "I am walking like John Wayne wearing a nappy"!
These quips are saved for people who know me. For general enquires its nearly always the "getting there" answer. Only if the persist do I elaborate
I don't think you're being negative tangocharlie. As has been said often it's just a form of greeting and for some they don't really want to know!! The latest I've had is " Are you better now!" I think they feel perhaps it is about time that I was!!
Depending on how I am feeling, I often respond 'not too bad for an old gal'🙄
I always say it is the steroids, keep taking the pills!
I say, painful"and they are off
Exactly. I don't want to put people off but can't honestly say I'm fine thank you either. some good suggestions on here. x
I find this a difficult one as it is always followed with a comment on how well I am looking when I am feeling particularly awful! So I usually say that it is due to the pills! Otherwise I say nothing and smile sweetly - what is the point? Most people don't know that there is anything wrong so there is no point in enlightening them anyway.
I've had it said to me on many occasions 'you look well' and my stock answer to that is, 'looks can be deceiving'.
I usually say what I say when my doctor asks that question - “I’m managing”. My doctor wants details and makes suggestions how we can figure out how to make things better if I’m struggling a bit...most other folks (non medical) will just let it go at that. A funny quote I read recently: Never ask anyone over 70 how they’re doing, because they’ll tell you!
I've just realized that my doctor seems to take it personally if I'm not perfectly well. Like, what she's done for me (prednisone) should be doing everything to make me feel on top of the world with no other health-related issues whatsoever. And dismisses every other thing I've brought up. Fortunately I am, generally speaking, and considering my advanced years, pretty healthy.
I have already replied, It's a good day; I got out of bed without the use of a cane and walked down to the rocking chair on my own.
The right side of the turf!
Sometimes I say'it's not my face that's ill'. An elderly gentleman, going into our surgery, was asked by someone how he was, and he replied' parts of me are working well', and gave me, waiting for taxi, a big wink. Have never forgotten it and use it, at times, the saying that is.
I’ve used ‘still above ground’! It doesn’t half stop people in their tracks lol!
Around medieval times the rich ate veg above ground and the poor had to eat veg from below ground. Perhaps the rich knew something!
I usually say ‘Not So Sparkling Today’ which is usually followed by But You Look So Well!.......
What can you say really?
Hello I’m in the same boat as you. I also don’t know anymore as to what to say to family and friends. I feel for u. 🌹💐
I say that I feel very lucky. Yet I am not good at the moment. I say that this is a hard passage, that I don’t feel like myself and that I’ve lost my usual emotional buffer. (5mg).
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