Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group at a loss

I aint sure of anything anymore, this AS is really getting to me, knowing what is going to happen in the end, of knowing what the meds can/will do in long term usage, knowing that I will be able to walk my daughters down the isle, or run around playing with the grandchildren. the depression of it all is bringing me down. saw my doc today 2 more weeks out of work ssd interview today. knowing I aint going to get it because the doc told me he wouldnt disable me at 100%. knowing that the specialist I am seeing on the 5th aint going to tell me nothing that I dont already know. and yet go thru all the exams and tests just to be told there is nothing they can do for me at this time. knowing that when I do go back to work I will not be able to do my job and will have to transfer to a different dept. knowing that vocational rehab wont be able to help me either. the weather changes I feel it thru out the whole body. days before the actual change. and the pain nothing but pain cant sleep most of the time unless I dope myself up with meds. the muscle spasms that I get is so painful I cry. how can i live like this. this is so hardon me I cant stand it, my family crying and always watching me to see if I fall of not. to seee my pain reflected off there eyes and faces. the worrying of how the bills will get paid because I aint working. worrying about me because they know there is nothing they can do about it..I try to be strong for them. but when I confess that I am insecure they become more worried about me. I aint sure I can handle this anymore...I am venting..i know there is nothing I can do about this monster for in the end he will win i aint sure of anything anymore. what did I do to deserve this kind of punishment...its weight is to much for me to bare...some say have faith, I say how, some say to go pray I say why no one will answer. I failed........oak

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

Hiya oak, You WILL!!! get through this. I know its hard to be positive in the situation that you are in but keep fighting don't give up , get stronger. I realy hope thing will get better for you. Everytime i read these posts it makes me greatful for what i have. cheer up oak ((((((HUGS))))))(((((((KISSES)))))) lindzi xxxx

Sorry you're going through such a hard time, Oak. I hope you start to feel better soon.

Hugs,
Sue

oak you have not failed...
you are human. and the as monster pushes us to the limits sometimes. there are many nights when i feel i could pull my hair out the pain is so intense. it's maddening! i get so frustrated because i long to just have a few good solid hours of sleep. now it's just a beautiful thought of the past. i take the sleep when i can get it. i take the soma b/c i have too not b/c i want to. the muscle spasms take my breathe away.

your family worries about you and that's to be expected. i think they want to help you in more ways than one but sometimes feel helpless. i know art gets that way and my oldest. they want to do something but not sure what. they see the pain but can't quite take it away so it hurts them.

hang in there oak. your doc that is not supporting your choice, is that your rheumy? perhaps you might need another opinion? YOU know your limitations. YOU know your pain level. it's a shame with this disease because quite often i feel if i'm not bleeding some folks wont understand just how painful it is. i think if they spent the night in my body ala freaky friday..they'd have an enlightenment about what AS is all about.

take care oak...dont give up on your faith..sometimes we feel we are not being heard but sometimes I think God is a busy fella and is trying to get around to each and everyone one of us so it seems a little longer .


Buggy

Hi Oak,

Sorry to hear you're feeling so low right now. This monster is really no fun to fight with day in and day out. Although things may seem completely hopeless right now, I'd like to try and remind you that there will be better days ahead. Even for those of us that are in a constant state of flare, there is a range of highs and lows within that. You WILL have days ahead where things won't seem as dark and you WILL find those pleasureable moments that keep us hanging in. As you try to tough through the toughest parts, force yourself to stop looking so far ahead. Just concentrate on getting through this hour and this day.

The other thing I wanted to suggest is that you don't close your mind to the idea of vocational rehab. I know it may seem ridiculous with the level of pain you're having right now, but the pain can and does go through cycles and there is a very good chance that things could swing around for you. It's smart to be realistic, but it's okay to be hopeful too. Maybe you'll never be healthy enough to get back to your former job, but perhaps something less physical or part time might be do-able. I guess I'm just trying to say... don't close any doors until you are sure there is nothing waiting for you on the other side!

Please always remember this is not your fault, nobody chooses to have AS.
Hugs,

mig

Lovely words Mig, I agree so much! Please Oak hang in there.
Take Care, just get thru one day at a time.
Debra.

Hello Oak

I am so sorry you are feeling so low at the moment. It is understandable that you feel depressed when you cannot see an end to the pain. This circle of pain and depression will ease, Oak, you will come out the other end.

I made a post a while back where I expressed my concerns over getting worse as the years went by and one of the answers stayed in my mind. I was told "you won't get worse, you will just get different". Now I try not to worry too much about the future, I assume I am strong enough to adapt to any changing circumstances and that I will always find things to enjoy.

I hope you find some answers soon.


Carol

Dennis, honey, I so know what you're talking about. Sometimes it just seems fruitless to even try. I mean, why bother, right? When nothing seems to change. Hell, I was there at the beginning of the week and for most of the past couple of months.

But the thing that I cannot get away from is that if we give in to it, then it wins. And I, for one, will not let this thing take my entire life away from me. I will not give AS the satisfaction, nor anyone who refuses to take my illness seriously. And if shear tenacity is the only thing that keeps me from turning to dust before the enormity of my reality, then darnit, tenacity is what will keep me going. And it does.

My friend, you have not failed. And I'll repeat that just in case you missed it the first time. You have not failed. You have been beaten down and pushed back by your AS, but from what I've seen of you, you always keep fighting to stay on your feet. So, if you can't trust that, then please believe that I trust it in you.

Many hugs, dear one,

Kat

Oak you are in a very bad place right now, but be assurred you won't always be there. Try to think positive, what I usually say to myself when I'm hurting real bad when none of the meds are working is this. Today is bad , but tomorrow may be better. One day at a time just like AA. You have a supportive family and that is great. I don't know if I would still be here if it wasn't for my wife who has been on this rocky road of AS for over 30 yrs with me. There is a light at the end of the tunnel Oak, never take your eyes off of it. Remember just about every person here with AS can say Been there, done that, and will be there again. Take care Oak and keep fighting the good fight.


Rick

Oak....you have not failed because you got AS....I stopped by for a peak because I'm feeling just like you today and saw your post....I'm trying to tell myself what everyone is telling you, and the words of Bono of U2 come to mind..."it's just a moment, this moment will pass".....or maybe it's "shall pass"...but it will, we will work through the pain and cry if we must, for "not all tears are an evil", said Gandalf. And just because you are not working does not mean you have failed as a person, you didn't ask for this and it's not fair, but when you get through this moment with the help of your loving family you will be able to think a bit clearer about the future...that's what I'm hoping to do after my emotional roller coaster of a day, you will too, just hang in there, let it all hang out and then regroup. Just the fact that you can come here and be so brutally honest is courageous, and you rock.

Peace
Linc

Linc O'Brien