Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I am new to this site and to AS, and Im not coping

Well it stinks that your optometrist doesn't know anything about AS. When I got iritis a couple years ago the optometrist was totally aware of AS and kept asking me about back pains, and that's how I ended up with a correct diagnosis finally at age 35.

Sue's suggestion about asking your primary care doc to get you into the opthamologist sounds right on. Let iritis go too long and it damages your vision. I was close to that, had residue on my lens for several months but at some point it seems to have healed.

Ok I will do.
Doesnt help that me pterygium in that eye has grown heaps lately.
Are you able to upload photos here at all?

Also if any mods are reading this, my boy has signed up (jrshadow) I hope thats allowed. Thought it might be good for him also.

Hello Aussiegirl

Sorry to interrupt your post which I can see has moved on to discussing current problems you are having.

I just wanted a chance to say Hello and welcome to you.

It's so nice to meet you and just wanted to say I hope you get all your appointments sorted and that someone starts looking after you and taking your needs seriously. Hope you can get the referral you need from your GP.

Sue is so wise about taking someone with you to appointments (if you can - and don't already). I had trouble with my Obstetrician with my 3rd baby all he kept talking about every appointment was that I was putting on too much weight and I'd never get my figure back after the baby. He soon stopped that nonsense when my husband came with me the next time.

You've got a lot on your plate with being a Mum as well, hang on in there - hope you get things under control soon. If you can at least get your eyes sorted, that's one thing off the list. A long list of problems can make you feel like you are falling apart.

Take care won't you.

I will thanks tinkerbell. And you are right I do feel like I am falling apart.
The thing that anoys me the most, other than the pain. Is that you just get one thing sorted and think phew thank god, and some other damm thing comes up.
But feel like there is some hope to control this or at least get by, thanks to all the lovely people here.

I don't know if this will help at all...

But when everything gets on top of me and I fell like I can't cope - my lovely Mum always tells me to lower my expectations of myself right, right down. This way you are able to start achieving (albeit small things) instead of never reaching your goals. Does that makes sense.?

I use this technique from everything to my expectations of the children to daily tasks etc. It helps boose moral a bit I find.

Like instead of thinking - right today I need to do 2 washloads, clean the house, hoover, go to bank etc I just pick one thing that is the most important or simplify a bigger task like cleaning the dirtiet room in the house not the whole house (difficult choice at the moment!!!)

I know your problems are health ones - but they affect homelife and worklife too. If you are having a patch where you aren't having much luck improving health issues - sometimes it helps to find another area to work on that you can have an affect on.

Just a thought!

Thanks for the tip.
Yes I have been very depressed about the state of the house and everything lately.
About 2 weeks ago, before my diagnosis of AS I was in so much pain the house was a mess so I downed half a box of panadol, then I got scared and made myself throw them back up.
I also rang the lifeline depression line here in Australia and talked to someone until I got a hold of myself.

You are right I need to make smaller goals and be happy if I achieve them.

Have to say my kids are legends though. They are a huge help god bless them.

Hello you,

I really understand how you feel.

I just want to add something else someone told me once:
You can't always be "super mum" (wife or whatever) sometimes you can just be "good enough mum".

It's as important (if not more sometimes) to get to a healthy place in your head. Try everything you can to boost yourself up. You sound so low... think of some things you can do that will make you happy... have you got a friend who always makes you laugh? Can you put a feel-good chick-flick on? Can you buy yourself a treat (maybe not ice-cream.....! lol)

Be kind to yourself - you are not well at the moment and need some TLC. You are not failing at anything - your body is letting you down.

Just wanted to send you a really big

Thanks you are a sweety.
To be honest it was the lady on another site that saved me and sent me here.

I hate coming here new to it all and just throwing all this on everyone, but I was in a bad way and so happy everyone just understood and didnt regect me.
Am feeling much better now thanks to everyone here. Pain is even a little better with the oxycodone eye is still killing though.

Sorry to keep going on about things, but you are right I have been trying to be super mum and everything else. My family treats me like there GP as I have a great interest in medicine and was going back to study to be a doctor but not now.
Anything to do with technowlogy, computers phones ect, I get called. I spend so much time fixing things for everyone else I forget about myself sometimes.
I am also the gear steward and bunk room manager for my life saving club. I think I have just pushed my body too far for too long trying to just forget about the pain, even when laid up for days at a time.

Will stop rambling now sorry
But truely huge thanks to everyone

Sorry about all the spelling mistakes, cant be bothered editing it all

Listen, hon
This site is all about sharing your problems and helping others with theirs. Reading your post will help and support others - some will identify with your problems, some will be helped by peoples replies. All, will want to help - and I can see that you've been responding to posts and encouraging people all over the place on this site!

I'm not surprised by how much you have been trying to do... I kind of guessed by how overwhelmed you were feeling. I always take on too much, like you. We have had family crisis after family crisis the past few years and I seem to have been at the centre of all of them, holding everyone together - not an easy job if you're fighting fit....

It's time for a rest, girlie, to get yourself on the road to recovery. Everything and everyone will still be there if you take (much needed) time for yourself.

Don't ever worry about going on. We are all in the same boat, with the same disease and lots of limitations. You are important and you matter - don't forget that.

we're here for you. please never apologize. people like to help others, makes us feel useful ourselves. its what we're all here for, to help one another. tinkerbell might be new to this site as well, but she's such a positive presence, glad she is helping you to feel better too, as she's giving good advice. usually i try to be so in control of everything but when things get to be more than i can handle, i just give it up, and that helps a lot. things have a way of working themselves out, and just letting it happen can be the best thing. i used to try to be all things to all people, now i focus more on me; don't think everyone in my life is on board with that, but they'll just have to adjust. hubby and i am on the same page, to me that's all that really matters.

PS the food network is showing a special on ice cream!