Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group i'm losing my fight!

Mr.Rearden,” said Francisco, his voice solemnly calm, “if you saw Atlas, the giant who holds the world on his shoulders, if you saw that he stood, blood running down his chest, his knees buckling, his arms trembling but still trying to hold the world aloft with the last of his strength, and the greater his effort the heavier the world bored down upon his shoulders--what would you tell him to do?
I...don’t know. What...could he do? What would you tell him?”
“To shrug.”


I can't believe that we would
lie in our graves
Wondering if we had
spent our living days well
I can't believe that we would
lie in our graves
Dreaming of things that we
might have been
-dave matthews

Hi Martin
WE ARE YOUR FRIENDS AND WE LOVE AND RESPECT YOU AND WILL HELP YOU ALL WE CAN!!!
Don't you DARE not post on here anymore. Martin, we have all at some stage got to just accept what we have and get on with it. I know that sounds harsh and I hate having to say it, but the bottom line is that we have to ACCEPT AS, whether we like it or not, and then we have to dig our heels in and do something about it. We are the only one's who can do this. You have got to stop putting a brave face on things and let everyone know how you are HONESTLY feeling. If you feel like having a good cry, then CRY. None of us are machines that we can programme or switch on or off. You have a family who want to help you, so LET THEM. You will cause them to worry more about you if you try and hide things.
Martin, you have got to put yourself FIRST, and sort YOU out before you can sort anything else out. When you go to the docs. tell him exactly how you are NOT coping, and that you need help, with stronger meds for a start, because obviously the ones you are taking right now are not working for you. Let him know how you worry about work and the mortgage and bills and everything else. And for God's sake tell him you need help in paying for meds. You will have to lay it on the line for him, because he won't know what's going on if you don't tell him, and if you get upset, let him see just how all this is making you feel.
Martin, you know that you can pm me and I'll give you my email address if you want to talk.
DON'T FORGET, we ALL love you and want to help.
Take care and write soon.
Love
Sue

When I saw this post I was very thankful. Not thankful that you are going through such a rough time, but thankful that there is someone out there who I feel like is going through what I'm going through. I know everyone who has this disease has to deal with emotional and psychological struggles as well as their physical pains. But I guess some are affected deeper than others.

This summer I got pretty sick, I believe the AS attacked me pretty hard, because the doctors couldn't find anything else wrong with me. And I was even hopitalized. I soon went on the No Starch Diet afterwards. I've really been struggling since then. I had never realized what kind of impact this disease could have on someone until about amonth and a half ago. I'm stuck eating salads and dried fruit yet still dealing with my fusion and pain while other people are out living it up with no repercussions. I've asked "why me" and I've broken down and cried. Recently I've been in a bad depression. My girlfriend has been so good to put up with me. I don't laugh anymore, I can't see the bright side of things anymore. This especially pains me because I am 23 years old and a born again Christian. It's difficult to be a good example to others when you never smile or laugh anymore. I feel like I've been in a dream for the last 3 months and I just keep waiting to wake up and feel normal again. I don't know if it's my body getting used to this diet change or if I've done this to myself by feeling sorry for myself or what, but I'm tired of feeling bad.

I feel for you, your post almost made me break down. It's hard for people to understand what it can feel like to be trapped in a body that is working against us. I know it could be worse, I don't like to pity myself. But this is so much harder than I ever realized. I'm gonna live the rest of my life with this, and it's only gonna get worse. I thank God I have Him, because I know one day I'll be in no more pain, but for now, it's not easy to see the sunshine.

Macky,

You will let us know if there's something we can do.

Klem

Hi Martin,
Don't know if I can help, but after reading your post, I want to talk to you. First of all as a new member, from what I have seen, you are a great asset to this site, so please keep posting. As I think you know, I do not have AS, but I am married to Mike who does. I can't understand the pain you or any other person with AS suffers, but I do see what Mike goes through. He has many many bouts of depression and I believe his feelings are very similar to yours. Speaking as someone who lives with and loves a person with AS, let me tell you this. AS has changed our lives tremendously and there are many days that he feels he can't deal, mainly 'cause of the pain, the fact he can't work, the finances and he has stated many times that he feels "useless". Because he feels this way he also at times assumes I feel the same way about him. There has been many times he has told me I make him feel useless or like a loser. That hurts (because I do not feel that way) but I have learned that he takes these things out on me, because it's easier to blame me. I do not know your family, but I am willing to bet, your wife feels about you as I feel about Mike. AS sucks, I feel cheated and robbed, but Mike is not AS, Mike is a person with AS. I love him with all my heart in sickness and in health. as hard as it is, I want to take care of him physically and mentally. I want to go through this with him. Giving up and shutting down is not only bad for you, but it is also robbing your wife of being who and what she wants to be for you. I am not saying it will be easy and that AS will not change everything, it will, we are living in the changes. These are the hardest times we have been through, but I try to be positive, I try to keep saying "where there is life there is hope". I know it's easier said then done Martin, but I guess the best advice I can give is to try acceptance. Accept the things you cannot change, the courage to change the things you can and the wisdom to know the difference (the serenity prayer is a useful tool and not just for alcoholics, think about the words). You need to keep talking Martin, you need to not love this disease, but accept it as a part of life and try to deal. Again easier said then done, but if God forbid anything life altering happened to your wife so that she couldn't work or provide, would you give up? After reading your posts, I don't think so. You are a good man with a good heart and I am sure despite any hardships and challenges this disease is inflicting on your family, your wife and kids and those who love you are thankful that they have you. No it is not easy and it may even get harder, but you have to keep the faith. Give yourself credit for all you have contributed to your family and when and if the day comes that you can't contribute physically, do your best to contribute mentally. There are too many days when Mike can't even move, but if he just says "I love you" or makes me feel appreciated, I feel like I can keep being of support to him. When you love someone, you want to be there for them and I am sure as hard as it can get, your wife wants to be your rock, so let her. I know for Mike the biggest challenge even more then the AS is his pride, his need for being in control and his ego. It's been hard, but he's learning to deal and he's learning that love really does conquer all. It may not take away the pain, but it makes life bearable. I am sorry this is so long, but I felt the need. You are in my thoughts and prayers as well as your family. Please feel free to pm us, or post or whatever you need. Take care and God bless, Your new KA friend, Sheila (&Mike too)

God bless you, Sheila (and Mike)
Debra

I just wanted to give you a big ((((((hug))))))).
Take care...
Dawn


~*Dawn~~crimsonhugs35@gmai.com~~*~

((((Macky)))) I am so sorry you are having such a hard time. I do the same thing you do and keep it inside for as long as I can. Sometimes just verbalizing it helps. I hope just saying it and knowing we are all here and understand and care what happens to you helps some. I wish I could take your pain away.

I have Lupus, RA, Sjogrens, Raynauds, OA and the darn Blepharospasms along with the AS. I am fighting a battle right now with stubborn iritis along with the spasms. I just said to my hubby yesterday almost the same things you said. It gets old and I don't understand but I guess we are not supposed to understand what happens to us in this life.

I just want to send you soft hugs and wishes for a better day. I will pray for you.
Possi

Hey Martin

Your AS sounds like it is fairly severe. Mine is too. I've had bouts over certain stretches of my life where things are just too doggone unfair. Too much pain, too much loss of motion, too much I can longer longer do and yet as my body functions less and worse the responsibilities I face are ever growing.

Each of these phases were tough to get through. You have to give yourself a mental "safety net". WHen you thing in terms like "I have to keep working or we'll lose everything, the house, the car...." you are just making things too tough on yourself.

I go out every day and believe I'm doing the best darn that I can on that day. SOme days its lousy compared to what others can do. I try like heck to be there for as many folks as I can but when I can't I give myself a pass. With AS we are entitled to certain liberties. We can't always do everything we envision and the liklihood if you're like me you do more than you are probably able to so don't look at the downside of what mayhappen tommorow.

So far I've helped provide for m y family in a way I wish to. I may wake up tommorow and not be able to and at that point there love will win out and help me and them to plan a ne wway to live and thrive.

I know all my kids really need is time with me and not much of the stuff I provide them. I tell myself every day literally--- OK if this is the day tha tit all goes to heck I know I'll still wake up tommorow and find a new way to survive.

I enjoy your posts here because they are wise and kind and humourous and those are the basic survival tools. THe one thing you need (me too in large doses) is faith that folks who you are "carrying" now would share the load if you slow down. I say this but don't always believe it either and too often I miss the helping hand extended by those around me 'cause I'm oout to satisy my need to be normaL. THe truth is though-- I ain't normal by the definition in Websters. I am pretty doggone amazing though.

Thoughts out to you. GO have some fun and shirk a responsibility or two.

 
stevec-they also serve who stand and wait

Dear Martin,

Although we haven't "met" on the board yet, I feel I must write to you.

You probably don't realize that by posting how you feel, you've helped countless others on here by putting what they are feeling into words.

You have a right to every feeling and every moment of anger, sorrow, etc. It's hard to accept that your body doesn't cooperate anymore. It's hard to keep a happy face on all the time when you're screaming inside.

I, too, ask you to go get some help. Your Dr or and/or good therapist can help a lot. Counseling is great and it's ok to take meds for depression. Everybody needs help at some point in his/her life. The smart ones go get help. Please do.

Please don't go away from KA. I went through a terrible divorce and major health problems and was so overwhelmed and depressed that I withdrew myself from the boards, too. I left all my friends and my major support group behind. I hurt myself by going away and not posting. Please stay, if not for you, then at least for your friends. From what I've read, you've nurtured countless AK sufferers. Let them nuture you for a while.

May you have peace.

Bonnie