being a supporter is so hard

Tami · being a supporter is so hard

I have become to see how hard it is to be a supporter of a cch sufferer, When you have to watch the person you love suffer so much and there is nothing you can do to help has made me feel very depressed and angery.

Depression is a hard thing to beat and to be honest im truely fed up with being this funny, hard, can deal with anything person when really inside i feel truely dreadful and struggerling to cope with everything.

To be honest im not to sure why i have come on here to tell everyone this but i have no one else to tell that will understand how i feel apart from Ike who at the moment dont need me feeling sorry for myself.

Cheers guys for listening

Sherri

You're here because you need to talk.

I HATE watching people I love suffer, I feel like my heart is bleeding.

TAM you are a HUGE help. No, you can't stop the pain, but you're able to keep things in order. Like answering the phone, paying the bills, knowing what day it is.

I lived alone for many years. We NEED help. And you do ALL OF THAT when we're not able.

I'd just lie on the floor not knowing what day it is...or what bills I paid amongst many other things.

Give yourself alot more credit...I know it hurts, but you are invaluable to a CCH.

Ike

You know your so F**k inportant to me and right now your great, it's so hard for me too, 1 to be in pain all the time and to be honest the only thing in my mind right now is what would be the quickest and most pf way to kill myself ..... And 2 because i can see in your eyes how much your hurting to and i cant do shit to shop it i cant even open my mouth without some thing horrible coming out so i choose not to speak at all. it cant be easy with me taking everything out on you all the time when none of this shit is your fault, I dont mean to be mean i dont mean the things i say sometimes it's just pain talking and thats it ... i guess it's no excuse but it it what it is... I need you for so many things in so many ways like Sherri said without you i wouldnt even know what F**k day it is... let alone what needs to be done today, without you i wouldnt get out the house or do anything but lay on the floor in pain ...

You get me out and although i might not seem gratful at the time i really am. Im sorry your hurting and im sorry it's my fault your hurting cch really does F**k with your lifes.... Love you Tam with all of my heart and always will no matter what life throws at us ...

Funny huh that your sitting in the same room but it takes a website to say what i need to ... finding the words can be hard... When you read this come and give me a hug ok!

Sherri

phil h

There are 2 phases of being a CCH........ 1. It just sucks , 2. I wish the pain would just finish me off. Talk about it.... at times it seems that death would end the pain...................only for us............. our deaths would be the gift that would just keep giving to our entire family........they never get to get over the pain.......................Our pain makes us want to die ; The pain won't kill us but take away our will to live . That's when having people we love more than life itself can keep us going . Dance with Louisha at her wedding ,Be there for Riley as he grows and needs a dad and remain Tam's Partner , without tearing her heart apart...........We all feel this (often at times) WARRIORS rest when possible and then battle on .... I do not tell my family how often I wish the CCHs would just kill me .............it makes me cry to have to tell them I want to be out of pain , more than I love them........................I do not communicate this with family .....I just can't . Supporters have it worse than us............they are powerless and often helpless to save us from our pain...............it helps to make a gratitude list and a list of things I want to do before I die.................pain or not; I know I'm not done here in this life yet . I still lie (as you know ) to my wife about extremely life threatening issues ..........False pride and I need to focus on surviving without her support ..............Sonetimes I look to those that can root for me without pitying me and feeling worse . Living is a choice , dying is resignation. By and by this too shall pass............the supporters hold onto their fear forever .............

Sherri

Tam Honey,

My heart hurts thinking about you...I can see you, peeking at Ike, afraid he hurt himself. John has pulled things out of my hand, I had scratches all over my face, arms and legs from cutting myself-it hurt too bad, I have begged John to kill me. And no Dr. takes this serious, so I just go to my appt., say "Everything is still the same", there are times I go in looking like a street person, my hair all over, no makeup, just too sick to care. You'd think I looked like a top model the way he acts. I've vomitted in the trashcan in the exam room, I've sat in the "loo" while in the waiting room, for fear I wouldn't make it and be sick in front of the other patients. It plain sucks. :smt022

The pain is so overwhelming, it' difficult to give a damn who loves us, including our children. I want to tell you that is only TEMPORARY. When we come out , all we want to to do is hug you, kiss you over and over, thank you from the very bottom of our hearts....and laugh and laugh, get cleaned up and look human again.

You, my darling, are so very important. I wanted to re-explain when I said "answer the phone". WHen I lived alone, I'd turn the ringer off, and no one knew if I was dead. I'd just lie on the floor, it was one long day...I absolutely had NO IDEA what damn day it was, what month, how long I was lying there...I couldn;t get my meds, or ask if someone could, or get a drink. I was a mess, my apt was a mess...I didn't know whether I had money, if I paid the bills. I had no way to get to the chemist,and I had medications there. I'd stare at the wall with tears rolling down my face. I couldn;t do my laundry, I'd crawl to the loo. I hit my head and have a black eye, I had no coordination and noone to talk any sense to me.

That's not all of it either. When I'd finally came out of it, I had to call people to ask what day it was, sometimes the month. I'd also have to call the utilily companies, to ask if I paid them, and how far behind I was. A few times they shut things off...no heat in the winter, no tv, no internet...no pain meds. No one to re assure me...or just to be in the apt.

Tam, the truth is that when we're in that much pain, we just want out. YOU have to be the sensible one. I am not saying it' s easy, or you don't get tired of it or depressed, but WE NEED AND DEPEND ON our supporters.

Ike doesn't know if he's coming or going. He's depressed too. He's also in pain that exceeds the imagination...sleep deprived, angry and just wants it to stop.

You ARE IMPORTANT. CCH's can't function alone. I know all too well. We love you so very much...you must keep reminding yourself and believe it....it's true. I never want to have to live alone again...I did it too long. I never left the house. For what? I had nothing to look forward to.

You dont realize how important simply answering the phone and door alone is, let alone all the other things you do are. You're allowed to get frustrated and depressed....who the hell wouldn't?

I guess what Im trying to say is you are so so so important. I love you Tam.

You are so strong so needed. We depend on you.

Ike

Thank you Sher you took the words out my mough i really could'nt say it better myself

Love you

phil h

You are simply the best ! ! !

Jill

I am sorry that I did not write sooner Tami... but I am now!

Everyone has said it best, we need you guys so much even when we fail to show it or take things out on you guys.

It is not fair that anyone has clusters, the toll it takes on sufferers or supporters.. that is all crap in my opinion. But here were and we have to play the hand that we have been dealt even when we want to throw it out.

I have been chronic for a long time now and it has been through this whole time that Marty has stuck with me. We met when the CH was really bad and do you think that when I went back home he said forget it? No way, he gave me the key to his house so that I would remember that I could always come back!

I bet that there have been so many times.. I know that there have been.. when he is ready to throw in the towel but he does something for him and comes back ready to battle the beast again with me. It is hard to explain all of this in accurate words though.

He is my rock and I could not do this without him. I know that had he not been there and had I not found someone to help me than I would not be here today, that is a fact. It is scary but it is so true.

I also know what it is like to wear the other shoe too since he is also a sufferer. His worst cycle came this year and that was hard to watch him in pain and not be able to change a damn thing. I could get the coffee ready, move things in the house so that he could pace but than I had to wait.. that hurt. I wanted to take the pain from him so badly.

We all do what we can and hope that that is the best. But it is when the clarity comes that we see what we have, what others have done for us and then we can share our love and appreciation. When we are in pain, nothing is good. I can become a complete bitch and Marty can become mean and neither one of us are like that normally but pain can change everything.

You and Ike can do this but it has to be as a united front which you are now. The peace, the clarity will come and you will realize that there is always an end.

Hugs to you both.

Jill

Tami

Thanx every1 Sherri i so understand what ur sayin love u xx

Jill when i very 1st met ike he was completely fine but just after i had Lou was when he 1st become ill, It wasnt with ch it was fits which where dreadful he would fit around the clock mostly with out warnin so had 2 look after him and a brand new baby all at the age of 17.Then it all went down hill from then.But i will have 2 say the fits where worse than ch because u totally lose ur life.But thankfully that has all ended.

I dont always feel down its just some days when everything gets ontop of me and if i have been stuck in the house all day.

Thanx again xxx

Sherri · FOR TAM

Love you more than youll ever know...http://www.youtube.com/watch?v=GmCKvY684WI

being a supporter is so hard

FOR TAM