Talking

alisunny

I get so stuck talking about arthritis with people. I shouldn't I know but I do.

I am the person who people go to when they need to talk, the person people turn to. And then I get stuck when I need to talk to someone.
I went to the hospital last week for a check up with rheumy. The only person who asked how it went was the person who took me, even though others knew I was going. I would like to talk about that but can't.

I feel like I am moaning every time I try and talk about stuff and I shouldn't be as things as kinda settled and okay at the moment. I do feel tired all the time and I don't feel I can keep saying that to people, I sound like i'm moaning.

I don't know why I am typing this, I don't even know what I want to say or talk about. I just wish someone would ask
x

valval

was replying and disappeared so quick answer lol
do people think you are reserved about it and do not wish to intrude or are they a little selfish just glad you posted and shared with us we are always here and always like to hear how things are going val

merri

It's really hard, I find, if you're used to being the one who helps others. It's hard not only to accept help, but to make others realise that you need it. I'm like you, there for my friends and family when they need me. Due to a number of factors with my arthritis, I've hit the worst flare I've ever had, and hit rock bottom at the weekend, which shocked others when they saw me, as although I thought they were aware of how I was, they clearly weren't. I was told off by my closest friend for being too independent and not allowing others to see how I really am.

I don't mean to make it about me, just I'm wondering if maybe you might be doing the same? Living with AR is so bloomin' difficult sometimes and I think people have a tendancy to forget what life can be like when you're living with it day after day. People generally don't mean to be uncaring, I find, but more that they get so caught up in their own lives that they forget about you and what's happening in yours.

I find sometimes it's best just to be honest, allow yourself to get it off your chest about how you are, as sometimes a good old grump about it for 15-20 minutes is more cathartic and helpful than if you spend a smaller portion of time but more regularly, and if you need help, try to ask for it. Easier said than done, I know but I've started to ask more than I used to, and actually people are often pleased to be of some help.

I do wonder also whether friends/family assumed that if you wanted to discuss the appointment, then you would. Hospital appts are a tricky thing as people don't want to be seen as being nosey or intrusive, and in not asking sometimes it makes them seem like they don't care, when really they do but don't know whether or not to ask.

I also think that there is a great deal of ignorance about arthritis, and the impact it can have upon you, and sometimes people get sucked into this, without realising how debilitating it can be. *

*my dad today when taking me to the doctor's surgery, didn't know what RA was, how it was caused or what damage it can do, despite having a daughter who has it.

stickywicket

I think merri has some excellent points there, alisunny.

You are clearly the ‘go to’ person when others have troubles. It’s a privileged position but it can get overwhelming and you have to be able to say ‘enough’ at times or just trade their problems for yours. I think it’s a two-way thing. No-one likes a perpetual moaner but, on the other hand, if you give the impression you cope well with all that life throws at you, then others will admire you for it but won’t be of any help when you need it.

It’s good to be asked how things are by people who really care, will listen to the answer and then act upon it if necessary. You don’t need everyone to be like this but you do need one or two.

People don’t always ask, though. Sometimes they don’t ask because they feel it’s intrusive. Sometimes they don’t ask because they don’t care. Sometimes they don’t ask because we/you give the impression all is well.

Is there one person to whom you could show The Spoon Theory and say ‘That’s how it is for me. I don’t want to moan all the time but I do need someone to understand.’? It might help.

tillytop

Hello alisunny

I am so sorry you are struggling and finding it hard to talk to others and to ask for support. I know how isolating it can be when you don't know who to turn to and when people don't seem to understand.

I can't add much to what the other wise peeps have already said - except to say that you can always come on here and "talk" to us about things. I know it's not the same as talking to your friends and family but, because we do understand, it can sometimes help. That has certainly been my experience anyway.

Thinking of you.

Tilly xxx

mig

Im not as arthritis wise as some of the others,who I think are brilliant,but I am always ready to listen if needed.hugs (()) Mig

suzygirl

I find a similar problem, which is where this forum comes in. I tend not to talk about my illnesses and shrug if asked how I am or smile brightly!!! I dislike hypochondriacs and find most people if you really tell them how iti s, don't know how to react anyway or family get upset.

I have met some lovely peeps on here who have helped me through tricky times and I try to return the favour. They all 'get it' on here so you get the support you need.

You are obviously a very strong and caring person. We all need help though, and you will find it here.

julie47

Hi Alisunny

It is a shame that you have to take on everyone elses problems and yet they are not willing to return the favour.
I am careful with whom I tell how I am really feeling but am very lucky that I have a handful of really goood friends and a lovely husband who understand my difficulties.
Most of the time to other people I say I am fine.
As suzygirl says, the forum is a good place to say how you feel as people are always ready to give ttheir support.

I hope you start to feel a little better soon

love juliepf x

LignumVitae

'But you don't look ill' I love that line. I think sometimes, because we don't have a huge weeping sore on our foreheads or a hacking cough people can ignore the other physical signs, like not being able to move properly, messed up joints etc and therefore discount our problems. Plus having arthritis has probably made you more empathetic and therefore an even better listener. Sometimes, you do just have to say 'sounds rough but I feel dreadful so tell me another time or help me by listening back.' As others have said previously, always willing to lend an ear and give a hug.
Love LV xx

Soretoe2

I concur with everything said here. I have found since finding this little gem of a site that it helps to read the experiences of other people who also have the dreaded arthur. It is so reassuring to know that we are not alone and that although most people don't see who you really are, here you know that people have the same feelings and can really empathise with us all.
Tiredness is one of the hardest things I reckon, we can distract to a certain amount from the pain but the sheer relentlessness of a tired body is so dispiriting.
Sometimes I think it would help to have a big A tatooed on our foreheads and then maybe when we are asked 'what's the A for' we can tell them!!
In the meantime hope you feel better soon, take care, Joy

bubbadog

Like alisunny and several of you who have spoken up I'm the 'lean on gal!' Family & friends come to me when they need advice or just want to talk to someone and get advice. I'm 'the rock' of the family. But when it's me who needs a shoulder or just needs to talk to someone everyone disappears! Thank goodness I have Arthritis Care Forum, your 'my rock!' And as a lot of you have said A lot of people don't realise how debilating and draining Arthritis is! My OH understands more now after reading up on it after he checked I was ok taking a certain medication with the other zillion I'm taking. But other family members and a few friends are totally clueless to what we have to deal with day/day out.
Your definately not moaning alisunny! Even if your having a good day, so what! You still have Arthur! It's not took a vacation because your having a 'good' day! The good thing is You have everyone on here including myself who are ready if you need to speak to someone. We are here for each other on here. So don't feel trapped anymore if you need to talk to someone do it on here.

kentishlady

This is such a difficult point isn't it. I think part of the problem is that if you have a broken arm or leg then people can see that you have a problem, but with OA or RA that is not necessarily the case. I agree that if you talk to friends and tell them exactly how you are feeling and how it affects you then it can be seen as if you are moaning, but on the other hand, if you don't tell friends and family they can't possibly realise the difficulties and pain you are experiencing. I also find the terrible tiredness so debilitating and it is very hard to explain to others who are not affected. That's why 'talking' on this forum is such a help because we all understand each others' problems. Has anyone else got some good ideas about how to deal with this problem of talking to others? All suggestions welcome!

carole123

Hello, I've just joined the forum, really just to be able to talk and share experiences. I have OA and notice that many of you seem to have RA - is this still the place for OA? It would be great to be able to share experiences and ask questions.
All the best,
Carole123

stickywicket

Hello Carole. It's good to meet you and, yes, this is the place for all the 'A's Quite a few of us even manage to combine more than one. Gluttons for punishment Join in anywhere you like or put your own thread up if there's something you'd like to ask or say. I hope to see you around.

villier

DITTO DITTO DITTO lots and lots of great advice, I like yourself would rather listen than talk, since joining this forum(best thing I have ever done) I feel I can express what I am feeling because everyone understands your pain, although my family support me I know they don't fully understand what you go through, as someone earlier said, in my case, you don't look sick, a lady said that one day when I was in hospital getting my infusion I just sat there and took it on the chin........anyhow why don't you give it a try and see how you feel, loads of people here more than willing to listen..............tc.........Marie xx

carole123

Hi Marie and 'stickywicket' and thanks so much for the kind welcome. It is so nice to know that someone out there is interested!

I have OA in knees, back and hips and at 67 am resisting pills and surgery for the time being (though there's an issue about pills which I could ask about some other time).

The great physio team I saw at the beginning got me started on gym 3 years ago when it started and that's been really helpful - I now do gym x 2 a week and swim x 2 a week. But of course you don't get rid of it, do you? I do get quite a bit of pain. I live with my dear son who couldn't be more helpful, but gets anxious if I seem to be ill, so I don't often talk with him about it and hardly ever about it hurting, as there is nothing he can do to help. I often wonder if it's better to have a good moan sometimes or better to develop a Big Blind Spot and refuse to recognise it . . . what do you think?

All the best, Carole

kentishlady

Hi Carole. I also have OA with my back badly affected which in turn means that my walking and mobility is very limited. Think you are doing very well with your gym sessions as I couldn't manage that. Hve just come back from an outing to meet up with my daughter and little grandson. It was a very tiring day and I really don't think that she realises the effort I have to make to do the bus journey to meet up. Hey ho! Unfortunately, we have a very 'difficult' relationship (but that's another story - more like a saga), I keep trying but when I have a day like today, I do wonder why I keep making the effort. I know it is very difficult for people to understand how OA and RA affects you and that is why this forum is great because we all do understand what it is like. Let me know how you progress with the gym. Beryl

Loulou11

Your not alone, I feel as soon as you say my knee/wrists are playing up the other person comes up with, I know how you feel my shoulder/ neck etc is aching I think it's Arthur. It seems easier to say nothing but I found one person who I can be bluntly honest with and they say nothing. Try a close friend rather than family (my mum blames herself for me having Arthur) she says it's because she gave birth to me! If I told her when its really bad she wouldn't cope with it all. Xx good luck xx

carole123

Hello Beryl, Good to hear from you. The back sounds very painful! I'm wondering if standing and walking really bugs it - my back & hip always tells me if I've done too much. It is tough - and tiring.

If so, it might be worth reconsidering a friendly gym - I was amazed that some very gentle gym exercises (like a slow minute or so on a bike or cross-trainer) actually were much less painful than walking and still helped with mobility. The weight is off, and machines like cross-trainers are specially made to hold you so that you aren't thumping on sore bones! All you need is some soft trousers, a T-shirt and some trainers. And of course swimming is bliss - no pain!

I don't think other (pain-free) people can understand pain much, do you? I know I didn't when I was pain-free - I tried to be sympathetic but easily forgot. When I got OA I suddenly realised that there was a whole kind of underworld of pain around me which people were coping with.

Hello Loulou too - Have a good day!
Carole