Newbies...It's not all Doom and Gloom

traluvie

Noticed recently alot of newbies have commented on how reading peoples post has kind of worried/scared them..
I would hate to think that new people are inclined to post because they feel it may make them feel worse..

Just wanted to clarify that everyon is different and how arther affects us individually can be different from others..
It is not all doom and gloom and it does get easier as you learn to adjust.

We do not just talk about arthur, chit chat is a place you can have a good old laugh too.

So please if your a newbie and reading this, there is hope, we do care and understand and we know how to have FUN too..

YorkshireLass

Thanks for posting your message Tracy, I must admit I am new to this myself, only diagnosed about 5 years ago and my problems are no where near on the scale of some people I've read about, but it has worried me that my future doesn't look good :sad: . (I have C/S btw)

Saying that though, everyone seems so friendly on here and I'm sure if and when things turn for the worst someone is always there.

YL

traluvie

CS?? Early morning still for me and my brain is not in full swing yet lol..

I understand it can be very daunting reading everyones stories, it does make you worried..I have only been familar with arthur for 12 months and the emotions that i have gone through has been a whole whirlwind of them.
Although when i first joined i was scared too by some of the stories i read, but with peoples support on here i have learnt to adapt and can even crack a smile on bad days, and thats good lol..

tkachev

I was thinking that Tracey. Most of us start a thread because we have a problem that needs advice, or advice on a new drug, so bad news tends to dominate the AC forum. But that is what is here for, to support others. Sometimes we have great news to post too. The better among us don't like to rub it in by saying I can do this or that so it is a hard balance to get right.

Thanks for starting the thread.

Elizabeth

YorkshireLass

Sorry Tracy

C/S = cervical spondylosis

YL

traluvie

Yorkshire lass, now you said it i know exactly what your on about.. told you it's the early morning fog and blonde hair lol..

Elizabeth, couldn't have said it better myself..

dreamdaisy

Those for whom the drugs are working, or have had successful operations, are noticeable through their absence. They are out doing what the rest of us wish we could. Because they are all better and mended perhaps they feel that they no longer have a part to play on here but surely they do. We need to hear from those who are doing well on meth, infliximab, humira, etc and those for whom new hips and knees have made such a world of difference. They are the ones who should be helping the newbies with their positive stories - but where are they? Oh yes, doing the stuff some of us dream about, so it's left to us, those for whom things are not going so well, to encourage, explain, empathise and inform. It's not easy. DD

traluvie

Well said DD..

It would be nice to hear from others that are doing well..It would give others some encouragement and hope..

YorkshireLass

I think it's nice to maintain a presence whether you are well or going through a bad time, because as DD says it's nice for those that are feeling well to spread their joy and hope to the others.

Anyway you also have the chit chat area to chill out and have a laugh and get to know people

YL

stickywicket

I'm doing well. I'm a good advert for arthritis (50, mostly good, years), 5 successfully replaced joints.

I've not been here for 12 months yet but I sense, in that time, there's been a shift in content of posts. I know it's tough at first when people are awaiting diagnosis and are scared on very many levels. Quite rightly, they post their worries and fears and we try to encourage and sympathise. And, again rightly, we tell people it's OK to let off steam here rather than be perpetually irritating their family & friends because we do understand. It's true. We do and that's good.

But, am I right in thinking there are now far more 'rants', far more analysing of every minute twinge, far more sheer anger at....well, people in general who don't have arthritis but also at the NHS, doctors, consultants etc etc? It seems to me there used to be more straight questions and less anger.

Maybe we could have separate 'Anger' and 'Streams of Consciousness' forums. I'm sure we would all use them at times but we, and more importantly newbies, would also find it more easy to avoid them if we were feeling a bit delicate ourselves.

dreamdaisy

I think that is another area of difficulty for us 'old hands' sticky: we have had years to get used to it, adjust, we gave up long ago counting aching joints or stressing about blood tests. Perhaps we have forgotten what it is like to be new to this (especially if one is coming at it from a healthy background).

Everyone thinks they 'know' about cancer but they probably know more about that than they do about arthritis. For a disease (in all its variations) that affects so many there is an astonishing degree of ignorance amongst the general populace (and I was in the ignorant bracket too). It is good that people are finding this site so early on in their arthritis (yup, I'm gonna use the J word) journey (ye gods, DD, pull yerself together, this is not crap telly) but the imbalance of success/failure on here is not reflective of arthritis. At least I hope it isn't.

hileena111

Hi Tracy
Great thread....I have thought sometimes about how negative it must seem to newcomers but to us it is a lifeline.
I dont think I'm as bad {sore } as a lot of people on here ....I do post when I need support or someone else does it??? I wonder who???
I would like to think that I'm here to support as well.....OK I dont answer a lot of posts to do with RA or PA 'cause I know nothing about those drugs {having OA} but I try to answer what I can.
So newbies please dont be put off.......dont just read.....come on and ask specific questions or tell us whats bothereing you and you will get a lot of support.
Just remember it does get easier and you learn how to cope.
Nothing to do with arthritis but recently I had a sprained pelvis and sprained sacro illiac joint.....I was on crutches.....I immediately contacted DD about them.....best way to use them etc etc....how to do things etc Might sound silly but to someone who doesnt uses crutches....at the most a folding stick and a mobility scooter for longish distances....this was a new thing and I knew DD was an expert on crutches

Love
Hileena

traluvie

DD i too was very ignorant when thinking of arthritis..

I thought what a few aching bones, i deal with that everyday, but untill you actually suffer first hand i don't think you can comment fairly, which is why the forum is so good..

This time last year i was a newbie with a whirlwind of emotions..I had gone from an active mom working full time and doing voluntary work to crying everyday..Took me till January to find this site..I was struggling to come to terms with what was going on and the dramatic change it had in my life, but i can honestly say that this forum has made my life easier in a way where i can talk about it when i having a bad day or i can ask questions, and someone can actually relate to what i am saying other than just thinking i am moaning...Everyday i can come on here and there will be at least one post that has put a smile on my face, and to me thats importnat..

I am in a much better place in some respects with my arthur than i was this time last year and thats not just due to tablets but to the good people on here..

Was thinking of another thread..A kind of take the mick one to lighten the mood.."The Good things about Arthur" ie being waited on hand and foot by my OH...

dreamdaisy

I didin't find it until the beginning of my fourteenth year, and actually I am glad about that.

It doesn't matter how many times we say everyone is different and we all react differently, it does not seem to register with people but then why should it? They are insulted by the appearance of this disease, affronted, angry, frightened, scared, bewildered, confused, frustrated, indignant - oddly enough a great deal like the rest of us. They want straightforward, definitive and positive answers and we cannot give those as arthritis is not straightforward or easily defined - and as for positive! :roll:

suzygirl

What a lovely thread, very kind of you to start it traluvie

I used to hold back from posting how bad things were for fear of upsetting newbies, then I went through a very bad patch and I really needed to vent. I have vented, and ranted. I have been supported very well by the lovely peeps on here. I in turn have tried to support others and have tried to post if things go well.

Its tough as for many of us the forum is a life line to those to understand the misery, and can offer useful tips and hints. It helps us stop boring family and friends to death with our health calamities.

However, it is important to remember the good stuff, the laughs and chuckles we get from threads and comments. Also to remember that forums are mostly used by those seeking a diagnosis or newly diagnosed and those more severely affected. Therefore a balanced view of how it is with arfur is not accurate. Those who do well, and their are many, don't have time or inclination to post.

I would hate to think that what I had posted had upset anyone, especially a newbie. However a thread title is often a good indication of a post and you don't have to read every thread.

Maybe we need a celebration thread?????

dreamdaisy

The thing I find the most difficult is when someone posts indignantly about one or two joints hurting because I would happily return to those glorious days. It is sometimes very hard to reply - all I can do is try to be them, try to see it from their point of view.

Of course it is not all gloom and doom, far from it. AC is a very good place but we do need those who are managing better to come and say so. They won't though, they are too busy being out there and doing stuff. DD

suzygirl

DD, I always though the beauty of this forum was that it was where you could be honest. I am sick of saying ' I am fine ' with my fake smile and clenched teeth. No point in explaining to them they aren't interested and don't understand.

Just being able to connect and offload the truth of how it is, with someone else who gets 'it' is priceless IMHO.

Arthritis comes in many forms and affects all of us differently. I would hate to see people unable to offload as much as I would hate to see newbies put off.

The daily grind of pain and the frustration of limitations gets to the strongest of us, and we need somewhere to turn. Forums are used by all, and you have to take things with a pinch of salt sometimes.

dreamdaisy

You are right, but if those who need to unload are feeling that they can't for fear of upsetting those who are newer to this business then the balance is uneven. Still, as with all things the forum will ebb and flow just like life itself(both arthritic and non-arthritic!) DD

traluvie

It is hard sometimes to read peoples posts and relate to what they are saying..
Some people can feel pain alot worse than others and have it in just one place, when you hear what they say sometimes you want to say well i have this this and this, here, here and here but i'm still smiling, but that isn't the answer they want to hear,,I am a firm believer in honesty, but sometimes honesty is not always the best policy..I sometimes would like to say exactly how i feel but i hold back for fear of scaring the life out of people or being booted off the forum all together lol

For some poeople it can take longer to adjust, accept and understand..I think i have done well to accept my life as it is at the moment in a space of 12 months..Some this can not be possible..Others have had this beast for many many years and to them it is the norm and part of life and to listen to people complain can be a bit of a kick in the teeth..

That is the point of the forum..Everyone is entitled to there opinion be it good, sad, happy or whatever, but the point is the title of the thread..It is not all doom and gloom...we all help eachother in our own ways ..People need to look at the good as well as the bad..Positivity..

Hope that read right and has not offended anyone ..apologise in advance if i have ....x

barbara12

Tracy that is such a good post, you are right it isn't all doom and gloom, there have been lots of positive post, but I suppose we remember the bad ones.
Like you say everyone is different, and react to the meds differently.

suzygirl

Tracy, that was a well written post and explained things very well. I was trying to say that earlier but didn't succeed as well as you. A post may be a rant or moan but the support recieved makes it positive.

I think the fact so many reguarly contribute whether it be occasionally or always, shows it is a success.

Stu69

Well, we're damned if we do and damned if we don't, to abuse the old phrase even further! :roll:

I think the key is it that we are all different beasts with differing conditions, differing tolerances, meds... yadayadayada.

I found AC a while back but only joined the forum recently, but have had the condition (although undiagnosed for 7 years) for about 15 years I guess. I also found this site when my multiple flares (often 5 or 6 joints) had come under the control of MTX. Put another way - I wasn't scared and I was not currently flaring to the degree I was with my RA say, a year ago, to when I joined early this month!

I certainly didn't join up because I fancied some doom and gloom and I honestly don't think that what I read certainly WAS all doom and gloom, from reading what I had before I joined! Far from it - from a newbies opinion, looking in before signing up a few weeks back - it's a place that anyone would rather not have to exist but are thankful that it does!!

I totally believe I am better here for not flaring, as that example of 'getting on with life' now; the fact is, like many, I too have had all that stuff; the untold sleepless nights, crying in pain - literally - wishing it would all end.

My problem is that I can't really talk about it if things are bad - I become more introverted. If I were really bad, I wouldn't be here at all, you see! :oops:

I think that people who come here (apart from 'Gary'!) need info - are recently DX'd etc - and will find that this site is simply a large and informative body of information which, when taken in context of their conditions, would in all probability, ease their concerns, not exaggerate them.

Finding the 'Chat' forum is more of a worry!!! I mean, people having arfur AND having a laugh, and a life even, in SPITE of the blooming thing?! That'll never do, surely?

If I'm not making any sense I apologise - I haven't proofed ^^^ it. Was up till 6am with the old vertebrae tickling my nerves so I am totally and utterly pooped as I still got in to work for 7.30. I have only fallen asleep at my desk twice so far too... yay!!!

stickywicket

Stu69 wrote:

My problem is that I can't really talk about it if things are bad - I become more introverted. If I were really bad, I wouldn't be here at all, you see! :oops:

I understand more than you know. I think many of us do the ostrich thing. I certainly do. Did it a couple of days ago. I suspect men are more prone to being ostriches than us females. I solved the problem by warning a forum friend that I was turning into an ostrich. That way I had to keep the communications line open so that she'd know I was OK and still partially human. For what it's worth I am now fully human again. Many might prefer my ostrich persona. It probably talks more sense.

woodbon

Yes I agree that we must often look a misrable lot and make people newly diagnosed think the worst. I know I often write when I'm not feeling too good or want to moan about something!
Most of the time I'm living my life and getting some enjoyment from it in the same way I always have. Its just that writting about that would make everyone go to sleep!

On the hole we are a resorceful lot and find ways of doing the things we always have by adapting and ajusting equipment. I'm not too bad and if you met me in the street you'd not know, I don't think. In the chemist today was a lady waiting for her meds and it wasn't until she mentioned the name of her prescription, that I realised she had arthritis. I hope thats a bit more cheerful.
Love Sue xxx

traluvie

Sue..

It's good to talk about the good days even if they are not that often I had a great weekend and posted all about my drunken antics
What you think is boring someone else may think of it interesting to see that somneone is having a fairly normal day..?

valval

i find chat more light harted and this section for getting answers as for doom and gloom it not all that bad and well it part of all our lives good and bad and when you can not say out loud i hurt because it would worry those around you you can come on here and let it out with others that understand they will suport you today and you suport them tomorrow give and take as in life there always a positive reply and good advice in my opinion val