Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group giving up....

after seeing how I am treated at home I see no reason not to give up just let my body deteriate and hope that I die soon....I am tired mentally and physically tired of the pain tired of my wife yelling at me to straighten up when I can't because it hurts to damn much. hell the only support I get are from strangers on the computer...maybe I am just tired of all the fights that go on around here..and the lack of concern for others health..tired of doctors and scans and exams.... tire of taking drugs...I told my wife I wanted to start that LSD and she told me to forget it high protein causes gout I just told her big deal I am all screwed up anyway what is one more ailment....this life sucks.....oak

I am older then I look and I feel older than I am

Or maybe take a vacation from the whole thing, sounds like your home life is a nightmare and maybe it's time to think about moving out for a while and giving yourself some space to think things through. Is there anyone you can move in with for a bit just to get a breather? Also, have you considered counseling? Sometimes it helps, sometimes not, and sometimes it serves to show both people that the marriage is for all practical purposes dead in the water and it's time to move on. Living in this kind of stress is NOT good for you, body or soul, so if you can manage it, I think this would be the best thing.

Cheryl




Dogs enjoy petting in public

Hi Oak,
I'm so sorry that you are not getting the support at home you need.

I'm on the "other side" it's my husband that has AS, so I know how difficult it is at times to live with someone with AS, BUT that doesn't excuse the hurtful comments made .

I'm just so sorry you're going through this with no support, we all need support to get through life with different things, and living with a chronic condition would come high on my list. I know it's not the ideal option but keep coming back here where you have friends to support you.

Can I ask if you've really tried talking to your wife (sorry if I've missed you saying this in a previous post)?? I know from my experience I get so frustrated with Shug when his condition worsens and he's in so much pain it then affects the family, BUT he doesn't do anything to help himself. I feel sure if Shug exercised more and visited his docs more when needed his condition wouldn't be in such a bad way. Shug never talks to me and that frustrates the heck out of me, I only wish he'd share his problems with me more

Oak, I'm sorry I've no real answer for you here, just wanted to let you know that I see it from "both sides" and either way it's not easy.

As I said before, keep coming back and posting, you're among friends here and some of them I'm sure have been in the same situation as you.

Take care

Oak, Oak, Oak....
Reading your latest posts on this Forum, it was not difficult at all to notice a deep depression going on. And this post today just confirmes it.
You really do not have to give up at all, my friend. Just finally being able to put into words your deepest and most desperate feelings shows that you are already turning your spiral upwards.

I believe you are hitting it right on the spot with what you wrote here. You are tired, sooo tired of the fighting and the pain. And you are also very, very sad.

Being chronically ill triggers reactions. It is a commonly known fact that we as humans tend to go through some well defined stages in times of crisis - from the moment we get the first shock reaction until the good moment of acceptance and re-evaluation of our life.

In between these two phases there are several stages of denial, grief, panic and depression.
So it is normal to feel depressed in your situation. It is normal to get angry and it is normal to feel lost. Probably the reason you feel your only support is coming from this group, is that there are others here in a similar situation and that can relate to your pain.

But that does not mean that the rest of the world is Evil! You need to fight and do not let this chronic illness take over your life and decide for you what you should feel and how you should think!

You can live with this Oak, you can get over this phase of depression and adapt to this d"#¤ AS. It is a very good idea though to find someone to talk to, like a doctor or a psychologist or a social worker or something. Someone who is outside of you and your family and who can help you with some professional distance. Because (like I have already said) you are perfectly normal and healthy reacting like this. And there are specific steps you can follow to get out of this - and people who have studied those steps so they can lead you out of your depression as quickly as you can go.

I can paste a link about those stages I was talking about. This link is about getting Fibromyalgia (FM) but it is the same thing when you are having AS. Maybe you can get some help from reading that...I did.
http://fmaware.org/patient/coping/afterthedx.htm

Take care and continue to post here,
Jade

Please! My Friend... Hang in there!! i KNOW HOW IT FEELS TO HAVE NOONE CARE EXCEPT STRANGERS ! I felt like that so many times... but let me say this my friend ...the folks here at KickAS are so much more than strangers... because... they have felt and been where we have been. They don't just say, I understand lightly... they really do understand because they have been where we have been. Just want you to know I REALLY DO CARE!!
PLEASE don't give up, just come back here as often as you need to and unload, your anger, or your pain, or whatever it is that is getting to you... we do know...we do understand... we often go through hell ourselves... and I'm not just saying empty words. Life can be MORE than painful and lonely... this
crowd knows what that feels like... please don't give up!! Just come here and let it out, say whatever you need to say!! We are here for you, you really are not alone...Pain does make all of us a bit crazy... after all it really hurts...
a lot... I'm tired of pills and doctors too... but please my friend just keep in touch with all of us and don't give up...

Big Hugs,
CA

Hi Oak

I'm sorry you're going through such a tough time at the moment....

My hubby has AS and PsA (he was diagnosed in 1998 when he was 29) I don't know if it will help any but I just wanted to let you know what I felt and how I reacted cos it sounds to me like your wife may be struggling with this too.

I know you probably feel you have enough to cope with.. but emotionally this can be an incredible roller-coaster for everyone

You see having someone you love DXed with this kind of thing is really strange.... it's like a bereavement and you can go through exactly the same feelings as if you'd lost your partner ... ... Shock... Anger... Guilt... Withdrawal.. Despair.. Acceptance. .... And you can loop back and go through stages again and again..

It seems to me like each time this disgusting disease takes another little part of my husband away I go through all the feelings over again and in different quantities.

On top of which you feel guilty because you don't know how to react or help... and sometimes you want to ignore it and pretend it isn't happening at all

I remember reading a post here about someone's partner who 'always knew when to push and when to support"... I wish it was that easy I always feel that I get it wrong

please... try to remember all your past together... this is the woman you fell in love with and had children with and built a home with...

I know it's so very difficult especially as you're the one who has to deal with the pain... but she needs help through this too.



Take care
Justine

Hey Dennis. We all hit rock bottom a few times a year probably. Only one thing to do. SHAKE IT OFF.

No matter how family and friends might be treating you only one person can help you. YOU!!!

Its hell and more than mission impossible to keep a positive outlook but it is the only way. You want to do a NSD or LSD, you don't ned your wife's permission. Just do it. My limited understanding of gout is that rich, highly salted foods, are its biggest problem so avoid theses things. You can avoid processed meats like deli cold cuts and eat lots of veggies and fish and hell all the steak you desire.

Also I expect that when someone is feeling as low as you do you are not getting enough exercise. Take some long walks. I know you hurt so grab a cane or something and get out in the fresh air by yourself.

Fiat (Colleen) is right when she says the people here are more than "strangers". You will meet lots of us eventually if you find a way. People here are just internet friends mor ethan that builds up. Look at all the good things people are sending to Cristina.

Take care and know that we all have days that are so bleak that it looks like there is no escaping AS or the sadness it can cause. We can escape the sadness. I can't put into words how low I got on at least two occasions and all I can say is hang on AND FIGHT LIKE A CHAMP!!!

 
stevec-they also serve who stand and wait

Thank you for a wonderful post, perspective and reminder of what my wife and folks like you go through with every battle we lose. I forget how much my wife loses too.

 
stevec-they also serve who stand and wait

Dennis,

My heart breaks everytime I read one of your posts. You have gotten great advice already so I won't repeat it...........
Justine is so right when she talked about the grieving process. It took me about a year to adjust to the fact that I wasn't going to improve and only get worse and I have wonderful support at home, but it's still a shock and much like the grieving process.

You and your wife need to talk it out yourselves or if you can afford it, talk to a counselor. We don't always communicate the way we should with the ones who mean the most to us.

This is not an easy path to follow and I'm so much better than many here...... I marvel everyday when I come here to see what someone is dealing with today. There is so much strength in this site, from the administrators who keep it going to the person who just comes and lurks because they need to know someone else feels like they do..........
it's a family of concerned friends, not strangers, come and talk and vent anytime, we will help you get through this.
.......but you do need to start a communication of some kind with your wife so she can see what you are dealing with.....
give her a chance before you give up, and Steve is right, a long or even short walk, in this weather clears your head out and gives you some thinking time.......

Don't give up please, we are all here for you......

hugs,

linda

Hey Oak, I really hate to see someone get so down,but believe me, I have felt the same way you do--sometimes just wanna check-out--and I'm taking all this without anyone, but my dog(he's my bud)--I get so pissed off at myself when I start feeling that way~~the ASkickers don't give up--were warriors and fighters and carry twice the load of a healthier person, and some even whine louder than we do~~we're allowed to feel down, but you bounce right back~~you stay strong and try to see about getting or dealing with support you need at home~~taking a vacation sounds like a good idea~~~Bill...............