Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I'm fighting a losing battle!!!

This crap we call AS has ruined me as a person, as a father, and as husband. I'm very close to giving up. I'm so depressed and angry all the time. I feel like crawling up in a corner and dying. I'm so lost. Scotty...

please get some help and talk to someone. We know how hard it is, i was there too. Prayed to God to please not let me wake up another day. But here I am and so glad he did not listen to me..PLEASE hang in there, sending you big hugs and blessings, yoly

scotty, aloha

don't be mad at yourself for this disease...get mad at dog...it's not your fault.

you're a young 'un here, don't give up...AND
what they don't tell you is that the sysem is set up so that you must FAIL five different drugs
before they get you on the enbrel or remicade, which does work...it's very tough living thru all this chemistry-set
experiments with you as the subject, but your doctor was talking enbrel, now he's got to qualify you...
THERE IS A LIGHT AT THE END OF THIS TUNNEL.

just a note, asside, you're gettin' way more powerful pain meds than most doctors in us will prescribe...
some of this uselessness/hopeless/bad karma stuff can certainly be associated with the cycles of the pain meds.
please, tell your doctor you're so doped up that you're having mood swings...there are painthingees with built in
antidepressants.

hang in there, best of luck
aloha Ben

Hi Scotty,

Do not throw in the towel, we would miss you around here. Appears you are a rather recent Kicker signing up a few months back... 2 yrs prior to your signing on here I went through the same thing... but I was really, really close to acting on it. So I had to check into hospital in the middle of the night I was so afraid of my thoughts at the time.

Most of us have been there and this disease kicks you down at times and it feels overwhelming... but better days are always around the corner at some point and Kickas is always here for you if you feel there is no where to turn.

I can hardly believe where I once was with this disease, but glad I never threw in the towel... something will come along, new drug, alternative, changing diet or combination of the treatments that hopefully provides relief.

Kickas is always here for you

Tim

Not ruined, just beat you up a bit. Hang with us here Scotty, post every ten minutes if it helps.

AS does tend to make us crumpy and sometimes regretful of things we've said out of pain or frustration. It doesn't make us useless. Our priorities change. When we can't get out there and throw a ball for our kids, we need to refocus on sitting up to the table and helping with homework instead. If you're bound to the couch, turn that tv off and read a story, tell tales handed down from your grandfathers days, help build a model. Small things can make us feel useful again.

I think you may want to talk to someone about the depression. It may be a side affect of the pain killers as others have pointed out. It may be due to the pain cycle which is so normal. You're not alone in this, we've all fought the demons on one level or another. Last winter was my lowest point ever but it gradually passed. It did help coming here and listening to all the others fighting the good fight, encouraging others, offering support. Making sense of it when it seemed there was none to be had.

We're here for you.
Klem

Hello Scotty

I don't think we have ever spoken before but you sound so down I felt I needed to respond. Please know that there are people out here who care that you feel so low. Please never, ever give up, keep on fighting. I have been where you are, I think you will find a lot of us will understand what you are feeling.

I used to dread the future, thinking it can only get worse, but someone answered my post that it may not get worse, it may just get different. Made me think and realise I had to change my attitude - not easy, but I did it.

Hang in there Scotty, you can make it.

Scotty,

Trust me, I know how you feel.

I joined around the same time as you and seem to be in the same stage of treatment/diagnosis as you but you do have different meds for treatment. You also have similar pain. I know that you are battling relationship/intimacy issues as I am too. It's hard for your loved ones to truly understand. They see the pain you are in and want to help but don't know how but they still have their needs to meet as well.

At least when the docs couldn't find anything wrong with me there was that hope that it was all in my head. But ever since last week I was told they found damage and the realization that it's not going away that I will always be dealing with this is sinking in. I'm scared that I will be in a wheelchair and on disability by the time I'm 45 (or even worse in a wheelchair and can't get disability but need it).

I'm not married but I divorced 2 years ago, perhaps largely due to my pain. I'm 32 and I still haven't started a family. I'm trying to imagine myself trying to have a child dealing with AS symptoms, wondering if I could possibly do it. I'm not so sure I can. My boyfriend wants children so I feel like I'm leading him astray because of the possibility that I might not be able handle it.

I have said many times that I just want to crawl in a hole somewhere and curl up in a ball. My meds may be somewhat to blame but I was pretty much this way before starting my meds. The pain is just as aggravating. Perhaps more so because I felt like I wasn't getting any help at all and I wondered why the heck I was "making" myself feel this way as the docs suggested.

As the others have said, mention how you feel to your doc. There's plenty of meds out there to try. Didn't you say you were approved for Remicade? If so, hopefully that will help you. My doc said I'm a good candidate for Enbrel or Remicade and said he will start me on it if he found any sign of inflammation, which he did. I'm just waiting to find out if he really meant that of if he was testing out this ani-inflammatory first. I'll find out in a few weeks. The hopes that biolics will help me is keeping me going right now. I'm looking forward to possibly having energy more than the pain relief. I haven't had energy since I had mono at 16.

PM me anytime you need to talk, chances are I will probably be feeling the same way.

Sharon

Hey Scotty,
[**BLEEP**] I've must of said this a 100 times. I don't post a whole lot but when someone is this low GOD I KNOW it's so hard.I still have weeks when i just can't take it anymore. I just went thru a flare that totally kicked my butt. You become a hermit don't want to move, because it hurts too much. To hell with the phone. You hate going to bed , then hate it even more to get out. You wake up, so you can try to go back to sleep. You don't care if you walk thru the house in your underwear or who see's you, just to try and use the bathroom. Then once your there, you can hardly turn to wipe yourself. You don't have strength to take a shower.Then finally take one and use all the hot water and wish you still had some left because you don't want to get out. You can't put socks on , never mind trying to tie your shoes. Your not sure what hurts more , your back ,hips or neck and shoulders. This is your day. Then the world around you is going on. Your wife and kids. Just can't deal with them , because they don't have a clue what your going through, SEX , you got to be kidding!!!! That's another post.
Scotty , am I close? Now what do you do to get out of it? When your in the middle of it not a whole lot. Time is all you can wait for sometimes. I'll grab the head phones and listen to something i can get into to try and take your mind off of it for a few. Meditate? Change your eating habits.Call your doctor and tell to HELP. SLEEP!!! PRAY!!!!
WHATEVER WORKS. If one thing don't , try another. DON"T QUIT !!!! It's so hard.
Your get up and go, got up and went. Scotty it sucks. Alot of people here know. We live it. I don't know what i would do if I didn't have KICK AS to turn too. Please try to keep the faith. Even when you don't think you have any left, it's what gets you through. When things aren't so bad explain to your wife what's going on inside of you. You'll both find strength together you didn't know you had. It took a long time for my wife to finally get it. Show her this site. It helped my marriage. Even if she just needs to vent. It's still rough. Somedays I need my space. Some days I need her. (most days) It's alot easier to deal together than alone. Alone you just listen to yourself and your totally screwed up and don't know what to do. You did what I think is the best thing you could do.... You reached out. That there says your gonna be alright. You'll get through this. You have people here that know what your going thru. WHATEVER IT TAKES. YOU TOOK THE FIRST STEP. I hope and pray everyday that i can take another step. And you know what WE CAN.
Peace and Health,
Mike
If you need to talk just let me know PM me.
Take care.

Hey SCotty I'm really sorry to hear all that and completely understand how you feel. My wife diverced me as soon as I was diagnosed and I have now lost contact with my kids 2 years ago. I went through absolute hell, no one wanted to know me, understand me or anything. Trouble is no one ever wants to know someone like that. It's a circle you have to break. Go to the doctor about pain management and probably depression. The sooner you break the circle the better. Good Luck and stay in there. Phil.

hey scotty, just came on here to look for some encouraging words for myself and found your post and now I don't need to post because you and all of the others who have sent their support and encouragement are with me in this.

I too had a really rough time last year and ended up seeing a counsellor for 6 months to help get my head straight, it was the best thing i did, recent weeks i've felt myself slippin back in that black hole but i know there is light at the end of tunnel and I know i can get help if it gets too bad again, please talk to your doc.

Thinking of you.