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

Hes still young enough to start again and hes trade is not that bad. I worked in engineering heavy work untill I was in my 40s batteld through the pain Had to stop in the end. I would suggest he needs stronger pain killers for a start Im on Humira been on 5months thats loosend me up but hasent helped with the pain but Im severe and have Kyphosis. For the pain I take Max strength Co-codamol and Tramadol together also use a tens machine for different joints this gives me relife. He must keep moving fishing and riding hes bike when he can will help a lot. But Ithink he must also not go into himself mix with people and relax with people other than you once he gets into shutting himself away it will be very difficult to get him out of it.He can always PM me if he feels he wants to talk to some one who understands.
Kevin

Hey there, Welcome to our group I have to start by saying how impressed I am that YOU are here! Kudos to you! Sounds to me like you both need help. This is a great place to be! Myself and my mom have this disease and know how bad it is. Its a full time job just trying to stay above water. This site has helped me immensely. Before this and before my moms diagnosis I thought I was alone. That's a hard place to be. You need to try somehow to SLOWLY get him here and see that there's a bunch of us and we still enjoy life. Maybe differently then what we were accustomed to but there is still light! People here so get it. Not only are we patients but there is a good amount of supporters here to! I'm sorry things are so rough but you need to know that there is still hope and your partner needs to know also You take care of yourself to! Don't neglect YOU! Its gonna be a long road but it will be ok!

Thanks so much for that. I have written those med's down & will check em out. He is only on codene which I don't think helps, last visit to his Dr he told him about it & the Dr told him his only other option was morphine which he won't perscribe - personally I think I know more than that Dr!! He is still in pretty much recluse at the moment & in the past has tried to also isolate me - think it must be hard for him when I decide to go out etc... but he is always invited - yet never wants to mingle. I totally understand where he is coming from & why he gets this way, I guess I just get a bit frustrated at times when I feel that I am doing everything possible & yet hitting my head against a brick wall. When he comes round I'll definately attempt to get him on this site & msg'g you - you are a big help & I really do appreciate it. )

Yeah, I am considering it seriously, I generally give him a few days to get over things & come right a bit - then I either give it to him or give it to him in a very nice way ) - after 13 years I think the time has come for a bit of shock treatment - even if I have to make the Doc apt & drag him there to talk about everything!! - am sure we will get there - can just be very frustrating, am glad I've found this group to give me some release !! )

Thanks Zanni, I'll get him on here if it kills me!! ) everyone has been so helpful & understanding - I'll make sure I stay here to keep venting & getting advice - is a blessing!! ) Hope you & your mum take good care of each other - is a hard disease to cope with

Hi Julz, Godness you deserve a medal!!
How does that old saying go??? You have to be cruel to be kind. All while you give, he will take because that's the easy way. And while you are doing all the running round dealing with it all, he dont have to.
The more you let him, the more he will wollow in his own self pitty.
Yes this is a shocking disease, but that dosn't give him or any of us the right to drag our loved ones down, We need their support but we dont treat them like our personal doormat. It is time to give him "the talk" Has he ever met anybody else with AS?? That's a huge help. I hope you will be able to get him to look at this site, It may also make a big difference to his attitude, There are so many people here that can help him.
We all visit the dark place, but we all get off our @#$% and get on with it again.
Go make you're self a cuppa & put you're feet up, you need a rest.
The AS family are here for you both.
Mez

Julz.
Im a little bit worried about hes depresion what your describing sounds like it could be a bit more serious.Be carefull with the way you talk with him I know its hard but be calm. He might seem like he needs a kick up the bum but on the other hand this could make him worse. If your worried PM me.
Kevin

Hi Ben
You have the right to your opinion.
The diet is not a religion to me,Christianity is. I believe the diet is a Godsend, however. It is not proposterous as I could not walk before this diet. I eat lots of good things on it,this "stringent" change in lifestyle was worth it. The disease changed my lifestyle to begin with so addt'l changes needed to be made obviously, as I was not healthy.Had results in a week,not an eternity.I am on no meds at all, before I could not walk even with 2 RX NSAIDS a day plus ODing on BC arthritis powder!!!
Some say it didn't work but maybe they didn't cut out the things they can't eat??? Almonds,dairy,table sugar all flare me. That would lead someone to believe it didn't work. These are "safe" foods,right?Sometimes you have to cut out more than just starch.
Just because it didn't work for you,doesn't mean it is "proposterous" All these people are not nuts.
BTW I can eat choco cake,muffins,cookies,etc all made w/ honey and coconut flour. I stay more full than before!!
My husband was as skeptical as you before he saw the miraculous results!! Now he's on the diet with me!! It cured his major indigestion problems!!!
JMHO

SHAUNA

Aww Julz... You really deserve an award for being such an awesome wife/gf to your man. He is very lucky to have someone who cares so much about him and his health. You guys are really in a tough situation - you really need a doctor who will listen, help treat his AS and depression, and follow-up. Getting the pain under control would be a good start - has he even tried anti-inflammatories? Like Aleve? They're not a long term solution, but it might be something to start with. What about seeing a physical therapist? I wish you guys were getting better help from his doctor. And it's terrible that this is taking such a toll on you too. Keep talking to people and trying to get him to see someone else that can help. You're doing an awesome job, just keep it up. Someone's got to be able to help him. Lots of hugs to you...

THanks Lon, I haven't been on for a bit. He's still giving me the silent treatment, so I just get on with it until he comes round - then I'll be talking to him, is not point even trying when he's like this.
Fingers crossed & I'll post again soon - thanks for your help )