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Topic: Desperation setting in (Read 218 times) |
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Summerbabe
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Desperation setting in
« on: Jul 20th, 2006, 9:45am » |
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 Hi all its Summer, at witts end here and just wanted to post , I am having such a hard time and at witts end, oops said that already. Anyway, heading to docs tomorrow am. I am his first patient actually and thank god, I have been on my meds and it seems none of them are working, tomorrow will be my 7th week. I am getting hit during the day now, not sure if its the heat or what? . But I am so freakin tired..I also woke with a banger this morning  and my irribility is affecting my attitude. I am a nasty person...I am usually such a happy kid...just having a Hard time with the hits, irribility , and no sleep , still getting 2 hits a night...I know you guys will understand, my husband looks at me like I am some kinda freak, we have issues anyway and he has no bed side manner at all.  . Whn I talk to my family , they look at me so pathetic and I am like 'oh comeon guys I will be fine" I know this will end for I am episodic / was remission for a year and half...longest has been 8 weeks for me so send vibes , prayers, I find myself crying alot and I hate it , my birthday is saturday and my whole family will be here at my house and I dont even want them here I know its terrible but ...  Well just wanted to vent and I thank all for support and advice iin advance...all my best, wishing pfdan, Summer 
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pattik
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Re: Desperation setting in
« Reply #1 on: Jul 20th, 2006, 9:56am » |
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Summer, I'm sorry to hear that you are having such a rough time of it. Based on previous cycles, at least it sounds as if you may be nearing the end of this cycle. You might want to point your family members to the OUCH website (link on the left) which has tons of information about this condition. It even has info just for family members and work collegues. If your meds still aren't working, you need to work with your doc to try something else. Good luck.
Pat
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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BMoneeTheMoneeMan
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Re: Desperation setting in
« Reply #2 on: Jul 20th, 2006, 10:08am » |
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Aww Summer, I am so sorry to hear you are getting it so rough.
Sorry to say, those are all the emotions we can feel when dealing with this bastard. When you are depressed, the last thing you wanna do is entertain a house full of company.......but, you cant let the beast win. You have to live. Tell the fam damily to come over and have a blast, you might just have to excuse yourself from time to time.
And tell your hubby to s.t.f.u. The emotional toll of this affliction is severe enough, you dont need him breakin your balls too. If he doesnt have something supportive or at least NICE to say, tell him you dont need to hear it. Maybe he can wait his turn to try to break you down emotionally?
You said you had the nasal spray but it wasnt working so well. Did you try the shots?
Did you get O2 or have you tried it?
Did you look at the clusterbusters site? What do you think about that?
Dont take naps
Dont drink alcohol
drink plenty of water and caffeine.
Put cool water or ice in your eye when you are getting hit. It seems weird, but it helps some. I know it helps me.
Lemme know if I can do anything for you.
Keep yo chin up, Doll. You will get through this after time, and the sun will always rise.
Pf wishes
Brian
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Mattrf
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Re: Desperation setting in
« Reply #3 on: Jul 20th, 2006, 10:34am » |
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Summer, I feel your pain my sweet. My cycle started in December and is still going strong, most days it is tolerable but yesterday I never dropped below a five and feel like I have been run over by a truck today. I also understand about the family, I don’t want to be any where near mine as well.
This will end and you will be happy again, just take it day by day and know we are all here for you and even if your family does not understand your pain, we do and we will always be here for you.
I really hope you get some PF time for your birthday on Saturday, I know how tough it can be to try and deal with a lot of family and friends when you are in pain and how hard it is to act like your fine when your not just to avoid all the questions and try to explain the pain to people that will never understand.
I really hope you get some PF time soon and happy early Birthday Summer, keep your chin up we are here for you.
Matt
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There is no stronger a person then one who can deal with brain pain and still function.
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alchemy
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Re: Desperation setting in
« Reply #4 on: Jul 20th, 2006, 12:17pm » |
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Hey Summer, I'm soory you're having such a rough time. Hopefully your cycle is near it's end. I know how you feel about family not understanding. Most people just don't get it. Your husband the one who should get it needs to step up to the plate and start supporting you. You know this place is like circle-k were here 24/7. hang in there hon.
jim
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E-Double
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Re: Desperation setting in
« Reply #5 on: Jul 20th, 2006, 12:22pm » |
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!!!Letter to colleagues/employers...use for family and friends too!!! http://www.ouch-us.org/chgeneral/colleagueletter.htm
HAve you tried melatonin to wipe out the night bangers?
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rickyshot
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Re: Desperation setting in
« Reply #6 on: Jul 20th, 2006, 12:36pm » |
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Summer I remember your earlier posts and I was exactly where you are at and suicidal to boot when I first posted here a year and half ago. I am episodic like you but when in cycle very sick with hard hits. I don't know how chronics do it but many told me episodic hits could be much harder. That is another debate altogether. Oxygen and DHE were lifesavers for me. And I am looking into alternatives because at the convention I got a lot of info and good reports about it www.clusterbusters.com
As far as your family is concerned take the above advice . Make them read this site. You have a horrible condition and I would not try to act well lwhen you are not well. They will have to learn to live with this too. Unfortunatley life goes on and there are many problems in life to handle as well as CH and the combo is a bitch. As you keep reading these boards you will see a lot of OT posts on our personal problems. Some of these folk will break your heart. There is always someone worse off believe me. I felt very empowered and validated at the convention and strongly urge you to save up for next year at Richmond. You will be glad you did. In the meantime you can pm me anytime to vent .
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cootie
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Re: Desperation setting in
« Reply #7 on: Jul 20th, 2006, 12:40pm » |
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Oh man.....a family joy joy happy happy party at your house when you don't feel good is NITEMARE enuff.....and all the stuff ya gotta do beforehand don't help. Yeah.....just excuse yerself alot in sessions and try to get yerself back 'into it' for anouther session and come and go. Hope you find releif VERY soon or go out of cycle before the party !!??? Wishful thinker Pam
I'm notorious for duckin stuff when I am hurtin and don't feel good......I know sum people prolly think I am a bitch and don't care. But a person can only do SO MUCH in reflect to what others expect out of you. Sum keep goin.....I just step back.
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fubar
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Re: Desperation setting in
« Reply #8 on: Jul 20th, 2006, 3:33pm » |
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That's a shitty feeling, desperation. I've been chronic for so long now, the desperation only comes when I have to deal with the trifecta of pain, finances and arguing with the wife. Thankfully, that doesn't happen too often, but man-o-man, when it does it just about makes me want to eat a bullet. I mean, why deal with this beast when real life turns crappy anyway?
Here's the thing... it will end. Whether it's the current headache, current fight, current financial issue, episode of CH... whatever. It will end. It WILL end. No matter what you do, it will end at some point, and you know that it will end. You are powerless to end it, just as you are powerless to prevent it from ending. It will end, all by itself.
Tell yourself. Remind yourself, it will end. That thought has saved my life more than once. Don't forget it.
-Fu
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LeLimey
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Re: Desperation setting in
« Reply #9 on: Jul 20th, 2006, 4:11pm » |
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That "It will end" advice from Foob is spot on.. when I'm getting hit I repeat that over and over in my head and when all around me is going up in smoke I seem to chant that inside too.. it does help.
We all do understand, we've all been where you are and we know just how desperate you feel. If you need to call someone or be called pm someone, I'm always happy to call people and chat! All of us are, we support each other through good times and bad. You're one of us, we'll do all we can. Let us help and we'll give all you need.
lots of love
Helen xxx
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Charlie
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Re: Desperation setting in
« Reply #10 on: Jul 20th, 2006, 9:25pm » |
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The letter is a good idea and so is some time for the relatives on the site. They need help so they can help you.
Things do improve though but I know what it's like. I always wanted to be left alone. I was happy if I thought I was the only person in the world at the time.
Hang on kid. 
Charlie
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