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Title: Loosing it...... Post by Chia on Oct 3rd, 2003, 7:08pm I don't think We're going to make it :-[......We don't eat right..We don't sleep right..He has the 02 on as we speak...the showers next...the darkness follows...I feel so helpless...This damn crap is coming EVERY day & night...We have no social life, I am even afraid to go shopping...funny though it only happens at home not at work....used to be only 2 to 3 weeks...so scared its chronic.. He times them...Writes in a Journal...Gets depressed...Would someone please tell me if life ever goes back to normal? Okay, thank you for letting me Vent now back to Charlie... ::) |
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Title: Re: Loosing it...... Post by Ree on Oct 3rd, 2003, 9:53pm So sorry Chia... you poor thing... Read back about a month and see me posting almost the same things you are saying... It is so hard to sit on this side and watch knowing you can do nothing to stop it... Sometimes I try to make Dave focus on me so he doesnt panic. I make him Cinamon tea for some reason the hot drink helps him. The O2 definately helps them to concentrate and stay in one place for a while or compose themselves... This cycle was hard for my 9 year old daughter she had never really realized what was going on in past cycles and really got a taste of HELL this time. It was my job to keep her busy while he was suffering and that was hard for me too because he has grown to depend on me. I am so sorry for you guys. I will keep Charlie in my prayers... and you too. Take a bubble bath and have some time for you... I know how you feel when you say that you don't even want to leave the house. Do you have a cell phone. He can call you while your out if he gets hit.. Good Luck honey and it was so nice to talk to you the other night... love ya Ree |
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Title: Re: Loosing it...... Post by Jackie on Oct 4th, 2003, 7:02am on 10/03/03 at 19:08:51, Chia wrote:
Yes, Chia, you all will make it. We will help you. My heart goes out to you both as we've "been there done that". I know you're tired and scared and feel helpless. Charlie has about had it too I'm quite sure. Now try this.....when Charlie isn't gettig hit, sit down and talk over the situation. Discuss what you all have learned here in the last few days. Have you applied as much as you can at this point? Is there more you can do.... more meds. you can try....both prevent. & aborts. Let Charlie know that you will fight with him. Tell him you know that he can do this. Tell him there is safety in numbers and he has you and the ch.com family to help. Promise him that everyday is one day closer to pain free times. Reassure him that you all will get your life back. Make sure he understands that you love him and that you don't blame him for any of this and that you are both in this together. You say he is depressed (very common with CH) so you need to reassure him that everything WILL be OK. By helping him you will help yourself.....by promising him it's going to end you will reassure yourself....by helping him to be strong you will be stronger yourself. I don't mean to sound unsympathic....believe me I know how it feels.....but it's time to get tough....it's time to reach deep and fight. The beast will not ruin your life..... he will not steal your life unless you all let him. It's a new day, Sweetie....time to get after it. You never know....today may be pain free. If it's not then go for tomorrow because sooner or later it will be good again. Let's go through what you all have tried (meds.). There may be something we've missed and might be worth a discussion. My heart goes out to you both... Big Hugs, Jacks 8) |
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Title: Re: Loosing it...... Post by Miss_Deleny on Oct 4th, 2003, 8:57am I am so sorry that Charlie is still getting hit. And sorry that you have to go through this as well. It will end! The advice you have been given is better than I can tell you. Just keep reassuring him that YES this will end. Like Jackie said ... let him know that you love him, that you are and will be there for him, that he is NOT to blame for what is happening .. hell, like I tell Christopher, he doesn't ask to get hit, then why would he think its his fault? Talk about how you feel and how he feels and the route you two are taking and what route you can pursue to trying other things .. but please do this when he is PF. When he is PF, spend that time together .. that time is precious! Have you asked him, during his PF times, what you can do to help him when he is getting hit? I know that most here just want to be left alone, but there are some that don't. Christopher doesn't mind me being around when he is getting hit .. not that I like seeing him in pain, but he says it helps him fight it a little harder. Quote:
I am wondering if there might be something at home that might be causing these "attacks". Not saying that CH is triggered by certain things but ... with that statement ... Does he have a very stressful job? I have read that some others don't get hit at thier job and that their jobs are stressful. Quote:
That is a good thing that he is doing there. This will give his Doc/Nero information on how many times/when/length that he is getting hit and might be more helpful in finding other meds that can help him. Quote:
That sounds like me not too long ago. I was feeling VERY depressed .. like you, no social live, afraid to leave the house because of his attacks, I was to the point of screaming .. not because of him but because that damned beast wouldnt leave Christopher alone! He is Chronic so, there is no telling when he will get hit .. he could be PF for a few hours up to a few days then WHAM! Back to back HA's for God only knows how long. Then he was put on Verapamil as a preventive (does ok, I guess) and imitrex injections as an abortive .. just got his O2 ... his HA's have lessoned some .. and we are getting back to somewhat of a "normal" life. The main thing here though is first .. making sure that he finds a med combo that will help in lessoning the amount and length of the attacks. If the meds he is on now are not helping .. then its time to try other meds and keep trying until he can find the right combo. Its a very frustrating thing to do but it does pay off in the long run. Please keep us posted on how you two are doing. And remember what our role as a support is ... support the sufferer not only when they are in pain but when they are PF too. Keep a little extra strength in reserve to fight for him/her when they don't have the strength to do it for themselves. And keep reassuring them that it WILL end! You both WILL fight together to win! And, you ARE stronger than the beast! But there is one thing that I did not mention here that is important too ... take that little bit of time for yourself too. Every supporter needs that time to relax too. Wishing PF and relaxing times for you both, ~April~ |
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Title: Re: Loosing it...... Post by Donna on Oct 4th, 2003, 10:00am It's strange to hear you say that they don't usually hit at work.........mine didn't either......but my stress was both at home and at work, so it doesn't make sense (what else is new with ch?) I had stress at home as a single mom trying to keep two teenagers and a 10 year old straight, and stress at work worring about whether they were in school or out doing what they shouldn't be doing. I lost a few good jobs during their teen years! The wonderful supporters advice that you've received above is the best you can find anywhere.....please listen to them especially about taking a break for yourself. Now that I'm supporting my son and seeing it from a different angle, my heart goes out to you for the desparation and frustration that you are going thru. God bless you and your guy. |
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Title: Re: Loosing it...... Post by Margi on Oct 4th, 2003, 10:31am BIG hugs, Chia. :( We've all walked in your shoes, honey. Yes, it will end. Yes, life will get back to normal. You've gotten some excellent advice here from the gals. We're all warriors standing beside you in this battle. I hope that you can gain strength in knowing that you're not alone with this. more hugs, Margi p.s PLEASE get him to try ice instead of heat. :( |
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Title: Re: Loosing it...... Post by Woobie on Oct 4th, 2003, 1:11pm Hey Chia.......... I really cant add more than the others have.... (you all know exactly what to say all the time.. i'm not that good with that........) Just wanted to let you know that I'm sending you vibes and thinking about you. You WILL make it!!!! Hang in there...... tina |
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