Anyone like this?

bailey27

Just thinking the last few days how people around have change - or so I am thinking at the moment that maybe it is me.

I have had my diagnosis for almost a year and have tried to live as normal a life as possible. I have found that more recentyl everyone, even my closest friends and family dont understand me and my relationships with them dont feel the same.

People ask me sometimes how I am doing but I find they are jsut asking and not particularly listening to the answer. When I talk about my condition they tend to not want to talk back or hear me but dont actually listen - if that makes sense?

No, I cant do what I use to and when I explain to people I get the feeling they are thinking - well last year she was super fit and healthy and now she doesnt do much because she has 'arthritis'.

I get moody sometimes, especially whenI am in a flare andalways apologise afterwards but then I feel like I have done something really bad and that they actually understand why I may have snapped. I dont shout at anyone or banything like that but soemtimes I just go quiet and want to be left alone.

anyone get like this??

patriciamary

Hi Bailey, welcome to the club. We all feel like that at one time or another. Only a few days ago I posted a real rant that "the world hates me". I felt better afterwards, but the next day I felt ashamed at being consumed with self pity. Many of us dont get a decent nights sleep and over time this makes us a bit cranky. Both my daughters have said to me that they often dont listen because it really upsets them, because they cannot do anything to make me better. Our families also suffer even if they dont have Arthur. It must be hard for them to see us change so much when they can do little to help us. If we had a broken arm they could wash the dishes do the ironing etc but they would know we are going to get better. With Arther its a different ball game. Hope you look back on your post tomorrow and laugh that you felt like that. Sending you my best wishes and hope life gets better for you.
Regards
Trisha

psyart

Hi - the feeling you are experiencing is felt but nearly if not all on this forum!!! Once we have 'arthur' in our lives, others seem to stop coming around or just dont know how to involve us in their lives anymore!!! I have noticed over the last year how little I see my friends - some I have known for years!!! Even when I'm on FB, they dont bother answering to my messages!!!! Sometimes I think its me, as I have withdrawn into a protective shell, but thats because I dont want to talk to people sometimes!!!

Sorry but dont know what the answer is - if there is one!!!!


Louise xx

tjc123

Hi Bailey 27
I feel the same, I try not to tell my family how im feeling...but I dont have to they just no when Im "having one of those days".

Its not easy having arthur but there is always someone here to listen to you.

Take Care
tjc

dreamdaisy

You have changed, you have one of the most unwelcome lodgers in the world living with you. It takes time to adjust to a diagnosis and it takes time for others to adjust too.

Family and friends feel helpless because there is nothing they can do.

It is very easy to be a self-absorbed arthritis bore, telling everyone every little detail until they regret asking 'How are you today?' When someone asks you that say 'Fine' and move on. Come and tell us how you really are, because we know and understand. And we won't be bored. Dreamdaisy

skezier

Hi Bailey,

I am also a full card carrying member of the club too...... You know you shouldn't worry too much about their reaction. Long ago a very good counselorr told me what people say about you says more about them than you..... Its kinda right you know.

I am lucky (or maybe not) to be able to withdraw from the real world..... I don't bother to say more than ok lesss I am really ill and even when I felt as if I was dying I didn't phone anyone....... Don't go this far and well I really hope they willl get on top of your flare soon. Its half the trouble it goes on and on eh? Sorry veered off there..... A ((( ))) and a hope it all gets easier for you soon.Cris x

bailey27

Hi
Thanks for all your replies. My flare has settled down smewhat the last couple of weeks. When I speak to people I dont really tell them what goes on either and just change the subject ebcause I feel it isnt something that I want to talk about really as I have to live with it 24/7. I just feel that recently I have found out who my real mates are becasue many of them I havent seen since things worsened.

frogmorton

Baily

you have had some really good responses here - I juts want to say i have been saddened and shocked by one or two of my friends responses to this too.

You DO find out who the friends are ( my friend found this out too when her hubby died recently) and you can treasure them.

I too avoid being an arthritis bore (how right you are Daisy - I WAS for a bit :oops: ) and listen to them as much as ever. Think its coz I cant stay up all night drinking any more.... :roll:

You take care

I think you are ok

Love

Toni xx

bailey27

Hi
thanks for that. To be honest thouh I dont actually talk to anyone about my arthritis, if I have an appointment coming up I may mention to my family that I have an appointment and if they ask afterwards then I will say how it went but in ebtween if I am asked to go anywhere or do something, if i am not feeling to good and cant do it I'll explain, 'sorry not feeling 100% today so will leave it it for today'. they would then ask why whats wrong and I'd say the arthritis is playing up again but then i feel that they dont really accepts my answer.
A memeber of my family has arthritis in his knee and is waiting for surgery and i often get ''well he cant walk with his arthritis...'' and so i am left feeling a fraud, because I can walk and from the outside I look like there is nothing wrong. . Trying to explain to people that there are different type sof arthritis and everyone varies with the symptoms and they dont really listen. I dont tell them to bore them either I only tell them when I feel I need to defend myself - for having a condition I have no control over.

frogmorton wrote:

Baily

you have had some really good responses here - I juts want to say i have been saddened and shocked by one or two of my friends responses to this too.

You DO find out who the friends are ( my friend found this out too when her hubby died recently) and you can treasure them.

I too avoid being an arthritis bore (how right you are Daisy - I WAS for a bit :oops: ) and listen to them as much as ever. Think its coz I cant stay up all night drinking any more.... :roll:

You take care

I think you are ok

Love

Toni xx

frogmorton

Hi Bailey

In that case it could be them having touble coming to terms with your illness - kind of denial on their part?? Rather than soemthing to do with you.

They would rather think the diagnosis was wrong and you will be fine if they ignore it ? (that is my husband there )

Would they read something if you downloaded one of the A/C leaflets maybe? Just a thought.

I hope you can sort something out with them but if you cant - stick to those friends who underrstand and keep out of the way of the others??

and of course come on here

Love

toni xx

tkachev

OH dad had a double knee replacement and then went straight back to building work. But he doesnt have arthritis.I feel I am expected to recover like him. I still have arthritis all over my body, suppressed by medication but they have side effects too.
Basically I live my own, quiet life and keep out of everyones way to avoid the questions. I much prefer my own company.

Elizabeth

speedalong

dreamdaisy wrote:

You have changed, you have one of the most unwelcome lodgers in the world living with you. It takes time to adjust to a diagnosis and it takes time for others to adjust too.

Family and friends feel helpless because there is nothing they can do.

It is very easy to be a self-absorbed arthritis bore, telling everyone every little detail until they regret asking 'How are you today?' When someone asks you that say 'Fine' and move on. Come and tell us how you really are, because we know and understand. And we won't be bored. Dreamdaisy

Well put DD. This is "my take" on it too.

remember Bailey - we're here in cyber space - lean on us anytime!

Speedalong

dreamdaisy

Hello Bailey27. How are things today? A little brighter I hope. Thinking of you. Dreamdaisy

bailey27

Hi
I feel ok today thanks, had a positive appointment yesterday even though he confirmed i'll be having knee surgery things are getting done and so i am not sat at home wondering what is going to happen - if anything.
I think i need to come to terms with the fact that my life has changed and that not everyone will undertstand no matter how many times you explain.
After my appointment yesterday i was asked whether the knee op was meant that i didnt have arthritis anymore? lol which that was the case! If you dont laugh you cry!

dreamdaisy

I'm not sure why we expect people to understand how we feel. Why would they? They haven't been diagnosed with anything worse than cicken pox or somesuch, which does clear up and go away. People cannot understand that something is permanent - and neither can we when we're first diagnosed.

Have you googled The Spoon Theory? If not, do, because it gives a clear explanation of how arthrtits affects people. It does help non-sufferers to understand, if only briefly. DD

wendgro

Don't you find people ask how you are just to give them a chance to say how they are and you end up listening to them waffling on about their ups and down and your problems don't even crop up again and then when something happens they say well you never said anything total surprise.

dreamdaisy

Yes, that has happened, and I let them waffle. When they finish I say 'Oh, so you've crashed the car, your sister's husband has gone off with a younger model, the goldfish died and you've had to cut out chocolate because you're on a diet but - do you feel as though you have tooth ache in every single joint? No? Well, get over it then. Those are all problems that can be fixed.' Usually works. (Mind you, I have to be in a bad mood first!) DD

shazzie39

Hi Bailey

I am new to this site but can say in 24 hours this has been a revelation to me. My friends ask constantly how I am and I get a phone call everyday from mum checking up on arther! Funny mum used to check up on me . I have only been diagnoised since 30th March and this thread has pricked my thoughts. I will watch with interest how the people around me react over time. Most of my close friends have so far stuck by me and my OH. I anticipate issues when I return to work -not with all but with certain individuals. They may yet shock me! My OH and brother have been great. We all share a wicked and warped sense of humour. They never let me get too serious about R/A and tend to take the mick something chronic. I know this might not be everyone's cup of tea but I find the "ribbing" excellent therapy even on bad days. My OH was watching me trying to put my trousers on the other day and when I asked what he was doing he replied "Waiting to see if you fall over" He was only kidding so please dont think he is heartless - he is a treasure! I was in fits of laughter! Funnily felt better for the rest of the day too. I hope this helps Bailey. Not really sure of much when it comes to Arther.
Love
Shazzie

dreamdaisy

Humour really helps shazzie. There are some other threads about this theme - are you my friend is one of them, I'll check for some of the others. How do you cope with nosy people is a current one. You may have to go back a few days/couple of weeks tho to find others.. DD (sorry, bit garbled, most joints thrumming at the mo.)

dachshund

Hi Bailey.
i have a friend i've known for 51 years when i told her i have arther she said i have it,
when i said about the pain i have in my hips and back and legs and that i take 7 tabs a day.
she said i have it in my back i take glucosmine and chondrotin and i dont have no pain.
i have tried that and it did nothing to help me.
i dont understand how people can have no pain. sorry i went on a bit. joan xx

dreamdaisy

People do they think they know what what arthritis is. They don't until they have it or they live with someone that has it. DD

sharmaine

Hi Bailey

Yep, I think we all have our down moments with arthur. Dealing with pain and discomfort on a daily basis isn't easy. I take my meds and still have pain - I wonder what the level of pain would be if I didn't take them??? I would be miserable beyond reason!

I've also met people who don't really listen to what you're saying. After my TKR operation I saw my BIL and he said how was my new hip. I said I don't have a new hip it's always been my knee! And, that's family!!! Amazing. They're not really interested in your life - they have their own life to live. I genuinely think the only people who really understand are my husband, my son; my mum and sister and my MIL or and my fruit and veg man! That's a total of 5 people!

Sometimes you just have ignore ignorance.

Regards
Sharmaine
X

bailey27 wrote:

Just thinking the last few days how people around have change - or so I am thinking at the moment that maybe it is me.

I have had my diagnosis for almost a year and have tried to live as normal a life as possible. I have found that more recentyl everyone, even my closest friends and family dont understand me and my relationships with them dont feel the same.

People ask me sometimes how I am doing but I find they are jsut asking and not particularly listening to the answer. When I talk about my condition they tend to not want to talk back or hear me but dont actually listen - if that makes sense?

No, I cant do what I use to and when I explain to people I get the feeling they are thinking - well last year she was super fit and healthy and now she doesnt do much because she has 'arthritis'.

I get moody sometimes, especially whenI am in a flare andalways apologise afterwards but then I feel like I have done something really bad and that they actually understand why I may have snapped. I dont shout at anyone or banything like that but soemtimes I just go quiet and want to be left alone.

anyone get like this??

bailey27

Thanks everyone for your lovely replies. I have come to the conclusion that people have changed, it has taken me a while to realise it. For example, my friends at the gym who i used to chat endlessly with, well, I havent heard fromt hem in 3 months and they were so called friends.... my partner is fab and we often have a giggle about it so it does help as our OHs often just want to support and help but know there is nothing they can do apart from support and understand.
I have definately reaaslised over the past yesar or two who my true mates are... which maybe is a good thing!?!?

ironic

I'm going out tomorrow with my dizzy mate and I always feel cheered by her. Last week she got hold of my hand and gave it a warming rub. I had not said anything but she just knew I was having a bad day with my hands. With a friend like that I don't mind loosing some of the others.