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        Cluster Headache Help and Support >> Cluster Headache Specific >> Wiped Out... HELP!!!!
        
(Message started by: jackieg on Feb 7^th, 2006, 12:38am)

Title: Wiped Out... HELP!!!!
Post by jackieg on Feb 7^th, 2006, 12:38am

I am into my 11th week and I am completely falling apart. I feel so alone and very helpless. I am freaking out on my husband because I feel that he just doesn't get it after 13 years. He yells back at me and tells me to be nicer to him. I though not waking him once in three months while I lay on my basement floor with 02 about 3 times a night was being quite nice. I am so tired from explaining myself or making excuses for missing appointments, looking like crap. and being forced to participate in social situations while pretending to have a good time. I am ashamed of my behavior toward my 11 and 12 year old daughters, constantly snapping at them or telling them to behave because they are making me sicker. So worried that I am not as strong as I was at 21, unable now to bounce back and heal. I want to run away, or crawl up in a big ball and become invisible, or something!!! Is this a nervous breakdown?

Title: Re: Wiped Out... HELP!!!!
Post by AussieBrian on Feb 7^th, 2006, 12:52am

Perhaps not so much a nervous breakdown as the emotional train smash we all see occasionally, so believe me when I say we know just how you're feeling and we sympathise completely.

You're in the right place now, Jackie. Rant and rave to your little heart's content because you're now amongst friends fighting the same demon and we understand.

Fantastic to hear you've at least got O2. Have you seen the the Oxygen Info button over on the left? There's some tips in there might even make it more effective.

Stay strong, we're on your side, and remember to breathe, breathe, breathe.

Very kindest regards,

Brian.

Title: Re: Wiped Out... HELP!!!!
Post by Jasmyn on Feb 7^th, 2006, 12:59am

Jackie, like Brian said, you are amongst friends that understand.

Try not to beat yourself up about your behaviour, it only makes things worse. You are a good person going through sleep deprivation, pain and a very bad patch.

You are safe here, so let it all out. You can depend on us.

Hang in there Girl, we feel for you.

Title: Re: Wiped Out... HELP!!!!
Post by MJ on Feb 7^th, 2006, 1:39am

We all understand how you feel.

I think you look pretty good too.

Just let yourself, hubby and the kids know you will be ok before too long. Folks here can help a lot.

Title: Re: Wiped Out... HELP!!!!
Post by jackieg on Feb 7^th, 2006, 2:06am

Thank you for the kind words. I am just having a really tough trip this time around. I teach 4-5 year olds and rarely miss a day of work. (They think I always look great and they give the best hugs) Today, my best friend with whom I work with asked if I wanted to join her and her two boys for dinner. I had 8 attacks yesterday, (every hour and a half) and was up all night.
I thought a little time out would be good.
She is on a tight budget and wanted to catch an inexpensive bite. She suggested our favorite Mexican place that we hit at least twice a month to unwind with the best margaritas. I told her that I didn't want to go because it reminds me of better times and I have really been missing those margaritas. Knowing how on edge I am, she suggests we go and says that she won't drink. Now mind, this is 4:00 pm anyway and we are with children. Well, I get to the place and she has a big frozen drink being put in front of her and tells me she thought she could sneak one in before I arrived. Now I know this sounds irrational and unimportant, but I was really hurt and pissed at her, especially when the drink was brought to our table and placed in front of me. It is not the drink that is the issue, It is sybolic of all the sacrifices I have had to make, plans to break, vacations to cancel, all out of my control. I lost last summmer and this holiday season was a disaster. She has been here for all of it and knows how sad I am. All I want is an evening to relax, unwind, and feel normal. She was at my house for a birthday party Saturday and I served the beers. Any other place or time, okay. I felt that she was really inconsiderate. Am I wrong?

Title: Re: Wiped Out... HELP!!!!
Post by AussieBrian on Feb 7^th, 2006, 2:17am

If you arrived early she was entirely within her rights to 'sneak one in', but if got there on time I reckon she was being more than a little insensitive.

Know just how you feel, though.

Title: Re: Wiped Out... HELP!!!!
Post by Gator on Feb 7^th, 2006, 2:51am

We all definitely understand. That's what is so great about this place - you don't have to explain what you are feeling. We get it.

Good to hear you have O2. What preventative and abortive meds do you take? What have you tried? There are a lot of effective prescription and alternative meds out there. I'm sending you a Private Message with some great information. Some you probably already know some might just be helpful. Check your Inbox in the top right corner.

Welcome to the asylum.

Title: Re: Wiped Out... HELP!!!!
Post by sandie99 on Feb 7^th, 2006, 3:15am

Jackie,

there's no need to feel ashamed. You're just dealing with the beast and it sounds to me that you're doing the best you can. [smiley=hug.gif]

The devil gets to you in so many levels, that its hard to even explain to those who have no idea what it's like. But always remember, that you have here people who know very well what you're dealing with, because we've been there, felt it and lived it. This the place to vent about ch. I've snapped to my closeones time or 100 during ch hits, too.

I understand very well how you feel about your friend's behaviour. I would have been hurt in the same situation, too.

Best wishes & lots of PF time to you asap,

Sanna

Title: Re: Wiped Out... HELP!!!!
Post by maffumatt on Feb 7^th, 2006, 3:54am

they don't know, but we sure do

I hope things get better for you, it sounds like you deserve a break. Take some ME time, and try to relax. Best wishes

Title: Re: Wiped Out... HELP!!!!
Post by karrie35 on Feb 7^th, 2006, 7:41am

Hi.

I just wanted to tell you you aren't alone. I can so relate to the 8 attacks and lying on the floor in the basement on oxygen trying to be quiet.

It's just you standing up (or lying down) to the pain. Somehow your family will get by for awhile. Your main goal, and your only goal right now is just surviiving the attacks and getting up to do it all over again.
You ARE making it, don't kid yourself. Stay strong.

Karrie

Title: Re: Wiped Out... HELP!!!!
Post by seasonalboomer on Feb 7^th, 2006, 9:20am

on 02/07/06 at 07:41:08, karrie35 wrote:

.....lying on the floor in the basement on oxygen trying to be quiet.

as an aside, always take care with O2. My basement has a gas water heater and gas furnace with pilots lit, so O2 in the basement is a no-no....... If you're on electric (or for the Canadians, "hydro") then disregard.

scott

Title: Re: Wiped Out... HELP!!!!
Post by Margi on Feb 7^th, 2006, 9:59am

on 02/07/06 at 09:20:40, seasonalboomer wrote:

um, we have our O2 in the basement and have had for years now. We also have a gas water heater and furnace, albeit in a different room downstairs. Hell, it sits right beside our computer there and we even SMOKE there (not while using O2 though). We've been oxygenating ourselves for close to 6 years now and we haven't gone *boom* yet.
And, Scott, it's only called "hydro" in Eastern Canada. Out here in the west, we have gas. Wait. That didn't come out right.

Title: Re: Wiped Out... HELP!!!!
Post by seasonalboomer on Feb 7^th, 2006, 10:04am

on 02/07/06 at 09:59:03, Margi wrote:

good to see you're taking all the right precautions Margi. better to be cautious than inflammatory ;) .

Title: Re: Wiped Out... HELP!!!!
Post by imnotbub on Feb 7^th, 2006, 10:08am

Get your husband to read from this site. My wife refuses to and it makes it a bit difficult, because there really is no way to understand the magnitude of the suffering if you don't experience it. My boys are a bit more sympathetic. I sat them down and let them know that when I snap at them it is because of the fatigue brought on by the lack of sleep while doing battle. Let them know that you love them and that you are sorry for the times you lash out. When they hear this, even though it still sucks for them, they may not take it quite as personal. I wish I could say the same for my wife. Good luck, hang in there, and come back often. This place is a life saver.
Steve

Title: Re: Wiped Out... HELP!!!!
Post by marlinsfan on Feb 7^th, 2006, 10:30am

Hi Jackie, so sorry you're one of us, but welcome home.

You are like me, and most here, who get hit worst during the night. Have you tried Melatonin? It has been a godsend to me. I take 9 mg about 30 minutes before going to sleep, and after a few nights of buildup, I am able to get at least 5 or 6 hours of sleep before the first headache hits.

Look into it, you can find it in the supermarkets or walgreens int he vitamin section.

Also, read here for great info on other meds:

http://www.brightok.net/~mnjday/chtherapy.pdf

PF wishes.
Jose

Title: Re: Wiped Out... HELP!!!!
Post by kayarr on Feb 7^th, 2006, 10:32am

"I felt that she was really inconsiderate. Am I wrong?"

You are not wrong for your feelings. You are tired right now and very sensitive. You could wait til you feel you can express yourself quietly and tell her how you felt. It's better than carrying around a load of resentment.

Hope it's better soon!!!!!

Title: Re: Wiped Out... HELP!!!!
Post by Guiseppi on Feb 7^th, 2006, 11:17am

Same suggestion, try and get hubby to spend some time on this site. It's what brought my wife around, course I wouldn't ask for directions so she had to find the site for me.

It's kind of a shame that everone understands when a cancer patient is an not a very nice person cuz they're in pain, and an accident victim can be an not a very nice person cuz they're in pain. We suffer a far more debilitating pain that leaves no marks, so if we aren't all suger and spice we're not a very nice persons!!!

We do know what you're going thru, yell and bitch at us we'll love you anyways.

Guiseppi

Title: I am not proud or happy to say that..
Post by Richr8 on Feb 7^th, 2006, 4:17pm

.. I could have plugged my name into your post on many occasions in the past. Unfortunately, part of my CH experience anyway. I am so sorry to hear that you are suffering so much right now, but I know through tons of experience that there are indeed brighter days ahead. Atleast a few. I recently found this place myself and it is a tremenous help, so take this opportunity to learn, vent, and share, because you have found a true family here that really has the knowledge and experience, truly understands, and definitely cares.
Hang in there.

Rich

Title: Re: Wiped Out... HELP!!!!
Post by Rock_Lobster on Feb 7^th, 2006, 11:10pm

Look into the RC Seeds or one of the alternative treatments. Speaking from experience, not going into cycle is pretty sweet.

Title: Re: Wiped Out... HELP!!!!
Post by ArCane on Feb 8^th, 2006, 12:59pm

on 02/07/06 at 23:10:31, Rock_Lobster wrote:

Look into the RC Seeds or one of the alternative treatments. Speaking from experience, not going into cycle is pretty sweet.

Totally agree with Rock. They have saved my life. I feel for you and are totally sympathetic. Many times family and friends dont understand what we are going through. Even witnessing major hits day in and day out, they still dont get it. Like the others said, bring your husband and kids to this website and have them read about CH. It might not make them totally understand but it will help shed some light into what you are going through. Feel free to rant and rave all you want because that's what we are here for :). Welcome to the family.

PFDAN,
Allen

Title: Re: Wiped Out... HELP!!!!
Post by Shaz on Feb 9^th, 2006, 7:33am

So sorry you have having such a rough time but glad you have come here to have a good old vent. It really does help.

We all really understand what you are going through. Dont feel guilty about the family. I am sure you do plenty for them when you are well. Every now and then us CHers have to take a back seat and our loved ones just have to get on with it.

Just put your arms round yourself and hug real tight. We are all out here hugging you too.

Shaz :-* :-*

Title: Re: Wiped Out... HELP!!!!
Post by Roxy on Feb 9^th, 2006, 3:16pm

I sympathize with you, but I also think you are being a little hard on your friend.

Please don't take this as being harsh....but you can't expect your friends to stop living their life because you have clusters. I used to be able to drink with my clusters (thought that was the one thing God gave chronics), but now I can't (unless I take a triptan).

I would never ask anyone to not drink on my account....not even my husband. He has his red wine every night with dinner.....and my mouth waters because I want some.

I just enjoy it vicariously through them....and then I'm the designated driver... 8).

Clusters are all in the mind.....no pun intended. If you let them make you miserable, they will. You life is changed when you have them. Just as someone with heart trouble can't eat the fried chicken everyday.....you don't get much sleep and can't have drinks while in cycle (sorry, I'm assuming you are episodic). At least your cycle will pass.....the heart patients won't....ever.

Hope things get better for you,
Rox

Title: Re: Wiped Out... HELP!!!!
Post by Linda_Howell on Feb 9^th, 2006, 3:27pm

We do all understand, but I'm afraid that I have to agree with Roxy.

You say you're into your 11th week so I assume that you are episodic. If you can, try to just look forward to when this will end and you can have a drink, be with friends and whatever else you can't do now. This WILL end.

Linda

Title: Re: Wiped Out... HELP!!!!
Post by jackieg on Feb 9^th, 2006, 10:29pm

You have taken this the wrong way.
I have not asked anyone to stop doing anything because I can't. I have been missing out on many things lately, including my kid's games, church, dinners, etc. I am disappointed but know life goes on for others. I have sent my husband away skiing because that is what he loves, while I stay home and roll around on my basement floor. I am not a selfish person. And this was not specifically about the drink issue. As most of you know, we all get to a breaking point. That is why I am here. The holidays were a disaster. My family still wanted company. I had twenty five for Christmas Eve, made a special dinner for my husband's family the next day, all in between kip 10's. Most sufferers continue to take care of their families, I know I am not special in that regard. But it makes me crazy when people still put expectations on me after I tell them how sick I am.(work, kid's school, church, home, etc) I would be better off getting into bed and LOOKING real sick. I might get a little compassion. THEY DO NOT SEE IT!
So this situation with my friend (who all is well with now) was her idea. Knowing how badly I have been feeling, she invited me out wth the kids. I did not even want to go, feeling so wiped and the place being our personal oasis. It was her idea to go there because she is on a budget and the food is cheap. I am not on a budget, but I knew she didn't want to spend money. So we sort of had a deal. We would go and eat, that is all. IT WAS HER IDEA TO MAKE ME FEEL BETTER FOR ONCE IN 11 WEEKS. She was trying to make me comfortable and acknowledge my sadness. That is what friends do, right. Not that you would stop smoking, but would you blow smoke in your best friend's face if they just got done telling you how hard it has been to quit (blow it the other way or walk to the end of the bar) or invite your best friend to dinner who is at the tail end of a diet and serve banana splits? It was that moment, a low point, sad day, that is all.

Title: Re: Wiped Out... HELP!!!!
Post by Dragnlance on Feb 10^th, 2006, 12:13am

Hi Jackie,
I can say that I know EXACTLY how you feel. Same situation, except it was family.

The only thing I can say, is that many times, your family and friends do not understand all we go thru, and do things that feel very callus to us. It boils down to people not thinking about what their actions may feel like to us.

My suggestion: Survive, feel better, catch up a few months sleep. Then do something fun with your friend. Basically (not meaning to sound harsh) let it go. Forget the pain she caused, because it truely was done in ignorance.

I have been chronic all my life. I also live in Montana. What this means, is that I have had no one at all to help me for 40+ years that had a clue. No matter what our friends and family see, they will NEVER truely understand. This is the single largest truth I had to cope with. NO one understands, unless they have the monster in their skull.
You are home here, Jackie. WE do understand. We have been, and are where you are now. We are your friends, and we are here for you, just as we hope that you will be here for us when we need your support. This is what family does.

Dragnlance

Title: Re: Wiped Out... HELP!!!!
Post by shipo on Feb 10^th, 2006, 11:23am

G'day Jackie..
We all here can understand what hell you are going through...
The lack of sleep is most devastating...But the lack of others who know nothing of CH'S or can't relate to the pain is hard to handle I know.
I've been free for some years now and I don't know why?
I had clusters at the same time lasting 3 months every year right on the dot...for over 15 years.Then they changed and the periods were longer between episodes.
I'm not up on the latest medications but I found Ergodril a great help...What works for some doesn't for others !!!
Try to get your husband on here to educate him on how you are suffering.
Cheers and I hope you are PF soon
Paul

Title: Re: Wiped Out... HELP!!!!
Post by Guiseppi on Feb 10^th, 2006, 11:27am

Sending you another hug and hopes for some peace. It's been a while since I was as down as you are now. It hurts. Know that we're all pulling for you. Wishing you peace.

Guiseppi

Title: Re: Wiped Out... HELP!!!!
Post by pfunk on Feb 10^th, 2006, 11:14pm

Jackie-
Hi. Very sorry to hear you're suffering, but welcome to the family. I"m 35 and have been suffering from CH as long as I can remember. I first came upon CH.com back in 2000 but I experienced a long period of HA free bliss. I have recently been attacked by the demon once again so I made my very first post a few weeks ago begging for help. I was at my wit's end. Jonny and the rest of the gang really stepped up for me. These guys are for real. Just stick around, read everything you can on this cite and every cite they tell you to look at (it really helps). Do get get your husband and family to read things on here to because it will help them understand your pain. Ask all the questions you might have. There is definitely someone around here who can get you the answer or lead you to the right place to find the answer.
Look into the melatonin like some of the others have said. it has been a godsend to me. I have found many hours of sleep and been able to eliminate several meds since I started taking it. Keep your chin up, stay strong PF time will come. Welcome again to the family and I hope some of what I have said has been helpful. :) ;)

Pfunk

Title: Re: Wiped Out... HELP!!!!
Post by llreed on Feb 10^th, 2006, 11:59pm

Hi Jackie,
God - CH can overwhelm and tear down so much. Life can turn upside down really quick. Hang in there sweetie... Take day by day. Hang out here and let us show you life can go on. You will find alot of support here and alot of sincere people who understand. Let it out... This group can take it.
PF Wishes,
llreed

;)