Kickas.org Forums Ankylosing Spondylitis General Discussion Friends and Family Support Group At my Witts End ...

Hi there, I am new to here & need some advice. My partner of 13 years was diagnosed with AS 9 years ago when he was 28. I've done everything possible to help in any way I can, I've done heaps of research, we've tried different diets etc... but he just doesn't seem to want to help himself. He is suposed to be getting 3 monthly bloods done, but hasn't done this in almost a year! He is constantly in pain & in & out of depression & nothing I try to do seems to help - he can just get nasty & angry & then ignores me for days or weeks!! He won't talk to the Dr about his depression & just doesn't seem to care about anything - least of all living with AS!! - I don't know what to do anymore to help him - I give massages, & have tried everything! I am almost about to scream at him to get off his [**BLEEP**] & talk to someone, but I just can't do it. I also find that I am not allowed to be in any pain myself - if I complain about something being sore, I just don't know what 'sore' is!! - I am on anti-depressants now myself to help cope as well as anti-anxiety pills - I love him dearly & know he has a kind heart - but I just don't know what to do to help anymore - any advice would be muchly appreciated ... thanks for listening. )

Hello Julz welcome,
Im sorry your having to go through this. He has obviously decided if he ignores it and dosent do anything it will go away.
Well it wont over 9 years with no treatment he has caused himself a lot of unnecessary pain and damage.Depression is a big part of AS and if hes in a lot of pain this will be made worse.He needs to realise that having AS is not the end of your life with the right treatment he could go on to have a much better life. Ive been suffering for 48 years with pain and I still have a reasonable life as do many on here.Can you not get him to the Doctor if only for a chat that would at least be a start. Or get him on here to read some of the posts so he can see its not the end and he dosent have to suffer like he is.
Feel free to ask anything on here vent let out your anger we all under stand what your going through and will all try to help as much as we can.
Kevin

HI Julz,
First off let me welcome you to KickAS. I hope that we can give you the help that you are looking for.

It sounds like your partner just gave up when he got the diagnosis. It is scary and overwhelming, but so is not knowing. Some docs just throw it out there as a disease that has no cure. Which unfortunately is true, but it doesn't mean that you can't still live with it. Look around at all of us AS Kickers, we are all in various stages of AS, and AS has affected us in different ways. You can bet that the chronic pain will sap every bit of energy, pleasure, and even life out of a person as they spiral into a depression. But there are many avenues to reduce the pain and damage that AS causes. There are the diets, an arsenal of medications, and exercise.

The hardest fight for you is to get him out of that dark hole that he has settled into. Many of us here have been in his shoes and know what he is going through and how he feels like he is the only soul on earth that has AS. Some folks don't believe in support groups and spilling their story in an open forum. But this is the best bunch of people that he can talk to, if you can get him here. At over 6000 strong he can see that he isn't alone, and hopefully he can see that while living wth AS is a difficult challenge it isn't the end of the world. Many of us are still pretty active.

You have taken the first step in coming here. We can support you as well. Now we have to get him to see that there is a life with AS. Feel free to print this post for him so he can see that he isn't fighting this alone. He has a strong family here, all he has to do is take our hands and start to climb out of that dark hole.

Julz - you say he's been willing to try different diets. Has he tried the No Starch Diet? So many here have had success with this, if this is one he hasn't considered, could he be encouraged to try it?

Otherwise, my instinct says that your instinct to give him a shock by screaming at him to get off his bleep might be what he needs! If this is something you don't normally do, he might need to finally hear your frustration. However, I don't know him, so I offer that advice with caution. Just my instinct - nothing more. You are the one who lives with this and knows what you can and can't do.

Best of luck. The KickASers are the best people to talk to as you go through this and you'll find other family members come here regularly to get support for themselves as well.

ahem, julz, aloha

chris is right about everything...

personally, i don't believe in this diet that is the religion amongst some here;
i think it preposterous and an unduly stringent change in life style for what seems like
an eternity to achieve tenuous at best results...jmho.

one thing...if he's not on any meds then three blood tests a month is absurd,
golly gee please don't nag him to do something of no value. NIL VALUE- total waste

down that dark rabbit hole is a really bad trip; you don't give any details about
treatments he's tried, failed or whatever; does he work,
where do you all live?

good luck,
you must be a saint...bless

Julz,
The responses you8 have gotten are good. We jsut do our best and not regret the past so that we ruin tomorrow.
My dear Wendy- has a point, he needs to be shook from his depression. Most of us have it. You need to rock his world a bit and tell him how it is going to get better. Yes, there will be roller coasters, but he can get help with depression and poain, I have, I did it for my wife. If he will not do it for himself, mak ehim do it for you!

Keep posting, ok?

Thanks Kevin, he was going to a Dr in our old city (we moved a year ago to a warmer climate as I thought this would help) & is on med's for it - but the depression is getting very bad & he tends to take this out on me & our cats (the poor thing) - but the new Dr he's been seeing here, doesn't even ask him how he is / how he's feeling & had the nerve on the last visit (about 3 wks ago) to tell him that his AS was in remission!! - what a load of bollacks! He went to one Dr here that seemed to care & is going to see if he can get an appt with him - however it has been 3 weeks now & he still hasn't made it!! I'll hang in there as I'm in this through thick & thin with him - but is very hard to get him to open up to the Dr. I will attempt to get him on this site - once he starts talking to me again!! (lol - is a common thing with him to ignore me for a while when I've had a bit of a go at him) - I am the main bread winner & I know this gets him down also as he can no longer do his trade & really needs to start thinking about what he can re-train as - this has also been going on for a year now & he still hasn't made any effort to go back & study or even contemplate what he will end up doing - he only needs a few days work as I can tie us over - but nothing seems to be working!! - is just very frustrating!! Thanks so much for your response, I'll hang in there & keep bleating on this site - so nice to know there are people out there that know what this is like..... ) take care & glad you are coping with your AS - it must be sooo hard to be going through this for many moons.....

No problem Julz anything to help can I ask how old is he and what was hes trade. Depresion is a terrible thing even without AS. You have a lot of guts staying and putting up with it most people would have gone by now.
Kevin

THanks Chris, I brought a book called the Dr (someones>?) home cure for arthritis diet & managed to re-arrange the diet to suit what he likes etc.. this worked for a bit & he did find it helped slightly - but since he has slowly gone back to normal - however I still cook so cook food that suits etc... he is on meds, quite a few to be honest - but as much as they work a bit, they don't seem to do too much. The codine for his pain just doesn't seem to do anything. WE moved a year ago & his doc back home was pretty good - but he went to the Doc here (new one) a few times & last visit the dr told him that his AS was in remission which is a load of cr#p! he just didn't seem to care how he was (never once asked him how he was feeling etc...) & the boy came home very angry & upset over this - he is now going to change doc's but hasn't made the effort to make an appt yet. He has tried a few different things, but just doesn't stick to them for long - we even moved to a warmer climate as I hoped this would help - but his depression is just getting worse & he just doesn't seem to be doing anything to help himself - is very hard to try to help someone who won't help themselves. I even did all the unpacking when we moved in the weekend (we live in NZ, Northland) as I knew he was pretty sore, however on Sunday when I was sore & tired all he wanted to do was go fishing - but I just couldn't be blowed, so now he's not speaking to me!! hehe - is pretty typical really, am used to it. Will try to get him on this site when he comes around .... could be days, could be weeks!! THis site is a blessing & I'm so glad I've jumped in here!! Thanks so much & any help is a godsent!! :O)

He's just turned 37 & was a painter/decorator - there's not much work around here for him where we've moved too - but I've told him that i don't mind if he doesn't work - just want him to enjoy his fishing & diving + riding his bike while his body is still allowing him to (he can only do these things when he's feeling okay) - I honestly do everything possible to make his life easier, but sometimes I just don't know what more I can do - he's on meds etc... but needs to change them I think - I am going to research some of the meds people are on here & see if we can discuss these options next Doc visit (when he gets off his behind to make one) !! Has been a rollercoaster ride for too many years ......