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Title: I can't cope Post by Lili-Laura on Feb 18th, 2005, 3:07am I just can't cope. I feel so down. Nobody listens to me, and nobody understands how I feel. Nobody understands what I'm going through. I can't concentrate at work. I just want to sleep. I feel worhless and that I am just a burden to everybody. I am up to nothing. I love reading, and i don't even feel like reading. Cooking is my passion but right now it's a chore. I am scared that my boyfriend (who stuck with me through thick and thin for 3 years) will love patience with me. I don't want to burdwen my mom, she also has her own life. I am petrified of losing my job because I am not delivering. I want to work but can't. And the doctor keeps giving me too little drugs and it makes me feel like a drug-addict. I can't stop crying. I go for physio to try break the muscle spasms in my neck, because doc thinks that may be a trigger and we are trying to eliminate as many triggers as possible. We're supposed to be on diet. My boyfriend is following it and has lost tons more than me. He cheats once in a while. I cheat much less than him but I loose so slowly and I am so tired of diet food. I just think that I am a burden to everybody. |
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Title: Re: I can't cope Post by Gator on Feb 18th, 2005, 4:17am Well, first off Lili-Laura, on this website you are among people that DO understand exactly what you are going through. I understand the feelings of worthlessness. I understand losing interest in things that once brought enjoyment. I understand how you feel when people give you such wonderful advice as "take an aspirin" or "can't you just lie down until it passes?" or "it's all in your head" It's all in my head alright. Where the hell else would a "headache" be? I understand losing your job because of this disease. I don't know the disability laws where you are, but you may find that you have some legal protection built in. Find out about it and use it to your advantage if possible. I know also the feeling of just wanting to die and get it over with. I've been there balanced precariously on the razor's edge of existence. I chose not to do that. I would not put my famly through that. If your boyfriend truly loves you, he will be there for you. You do need to talk and make sure he and you both understand that it's the situation and the headaches that you are frustrated with and not you personally. Get him into this website and into the Supporters message board. Give him the info he needs to support you better. Remember, he is a man and being one myself I can tell you men tend to believe they have to fix things. This is something he will never be able to fix. He needs to understand that and also that you do not think less of him because he can't fix it. I don't your mother or your relationship with her, but are you being fair to her by denying her the chance to give advice and comfort? Screw the diet. There are a few things to avoid: (These vary from person to person) Alcohol, some dairy products, foods that contain nitrates and nitrites, food with MSG in it, and chocolates come to mind; but unless you really need to lose weight, just eat sensibly and add exercise to your routine. Most importantly, please don't underestimate you worth to those around you. There is a saying: To the world you may be just one person, but to one person, you may be the world. I wish I could just give you a great big hug and say things will be alright. All I can do is share my experiences with you and hope they help somewhat. Hang in there. If you find yourself needing to vent or let out a little frustration, this is your place to do that. I have a few links for you to look at and print out. They may help. You might want to show them to your doctor. Here is a link to a letter that may help explain things to your friends, family and co-workers. http://www.clusterheadaches.org/Cluster%20Headache%20Syndrome.doc Here is a link to read and print and take to your doctor. It describes preventative, transitional, abortive and surgical treatments for CH. http://www.brightok.net/~mnjday/chtherapy.pdf Here is a link to some non-prescription alternatives different people have used to help with the pain: http://www.clusterheadaches.org/resources/non_script_treat.htm If you are currently taking medications, I would suggest you talk with your doctor before taking any of the nutritional supplements. At the very least check for interactions at a website such as: http://www.drugdigest.org/DD/Home/AllAboutDrugs Nutritional supplements can interact with prescription meds just the same as some prescription meds interact with each other. Better safe than sorry where your health is concerned. Good luck. I hope this helps and that if you feel youself going deeper you will come back here and let us know how you are feeling. Sometimes just putting the feelings into words gives you a chance to see them and work out a strategy to help yourself. |
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Title: Re: I can't cope Post by Sean_C on Feb 18th, 2005, 7:39am I don't think anybody could say it better than Gator ;) Nice post Mike. Sean.............................. |
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Title: Re: I can't cope Post by rickyshot on Feb 18th, 2005, 9:02am You also have to understand that there are chemicals in the brain and many people who have neurological problems such as ch and migraine have behavorial disturbances ie depression, anger. Everytime I am in cycle I am at danger for suicide. Then when it is over I feel so guilty that my kids had to see me this way and for the way I acted. But it literally cannot be helped. Sometimes the steroids given to me during cycle make me very aggessive. Forget diets they don't work. An all around healthy lifesyle is the key something most of us do not have. Diet, exercise, spirituality, good attitude, avoidance of as much chemicals as possible, drinking water, relationships all count for lifestyle. You have to find a way to eat that you can do for life not for six weeks or so till you lose weight and then go back to what you were doing thereby gaining it back and then going into the yo yo syndrome which brings guilt, self loathing and shame and failure. I lost 25 lbs five years ago and kept it off. I have a slow thyroid along with my head problems and am 50 years old. Weight does not like to stay off of me. I eat good foods in small portions, I eat 5-6 times a day and very seldom go into garbage carbs like cakes, cookies, goodies. Those are for cheat days once a week and then not binging. If you have emotional problems that cause you to eat, you will have to address them. When I am in cycle I tend to put on a few lbs from meds and eating haphazardly. It is very difficult to keep a good lifestyle when force to take meds and in cycle. You barely can get out of bed between hits. We all KNOW and are here for you. Don't beat yourself up. |
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Title: Re: I can't cope Post by cherylc on Feb 18th, 2005, 9:17am hi Laura...it was only 3 weeks ago that I posted in here with the same subject line...saying that I didn't know if I could cope. I wanted to just give up. I didn't think I had the energy to fight anymore. Well guess what??? I did, but not without help. This site gave me the info and support I needed. I went to my doctor and got the oxygen I needed, and started taking melatonin at night and I just made it through my cycle. The 02 was unbelievable. I think this is the first time I have said it out loud but I am out of cycle!!!! I made it, didn't think I would. Things always seem the worst at 3 am when you are struggling through a h/a and start anticipating the next one. It is easy to lose hope that the pain will ever stop. Just get through one at a time. And remember that they do end. Just concentrate on getting through the h/a you are dealing with, otherwise everything else overwhelms you. Really good advice from Gator... The hardest thing for me is to get the support I need. But you have everyone here on this site. With your boyfriend and mother...they don't know what you need until you ask them. I think that most people really want to help or understand, but they just don't know what to do and end up frustrated. I believe that my husband thinks that he has to fix everything and when he can't fix this for me he gets too frustrated and gives up trying. I have to be specific and let him know exactly what to do for me. Same with my mother (who gives unnecessary and unwanted advice)...she does well if I am able to give her specific things to do to help. She is busy running her own business and I always feel guilty asking her to do things, but through this cycle I gave her errands to do (pick up groceries, pick up kids at lessons, etc) Don't feel bad...that is what families and friends are for. You would do the same for her. I also lose interest in the things I love...don't feel like doing anything. End up on-line on this site or just sitting. Having clusters is exhausting...no sleep, appetite or energy. Don't worry about your diet...just eat what you can to keep going. Take care of yourself and let others take care of you...you are not a burden. Coming from someone who has been there many times... Hugs [smiley=hug.gif] and strength to you Cheryl |
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Title: Re: I can't cope Post by nani on Feb 18th, 2005, 9:22am I think we've all felt like this at one time or another. Everyone has given you great advice. And all of us offer our love and support. Hang in there Laura...you're not alone. love and hugggsss, nani [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] |
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Title: Re: I can't cope Post by Frank_W on Feb 18th, 2005, 11:54am Ditto what Gator and everyone else has said. A bunch or real |
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Title: Re: I can't cope Post by sandie99 on Feb 18th, 2005, 1:58pm Lili-Laura, [smiley=hug.gif] first of all, YOU are not a burden. You're NOT worthless!You're a wonderful woman with terrible pain. I am glad that you told us how you feel... [smiley=hug.gif] CH has the ability to make people said, down and depressed. I've been there and so have many others in here. We understand what you're going through. Remember that you can always tell us how things truly are. And you need to relax. Things always seem worse when you have CH. Last spring I thought that I would never live long enough to see that summer... But I'm still here. Try to think positively: you still have your job, your boyfriend is still there. And we, your ch family, are there for you, too. ALWAYS. I know how you feel about not sharing it all with your mother. I used to keep things from my mother too. These days I don't and my mum supports me in her own way. Can you talk about things with your friends? One wise friend also told me once that real friends will be there for you in all situations, both good and bad, all the time. I wish you the best. You're in my prayers. Take care, Sandie |
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Title: Re: I can't cope Post by rcw134 on Feb 19th, 2005, 11:44pm I stumbled onto this site and thank God I did. Todyay is the first day that I've been on it, and read as much as i could until my ice pick in my right eye started hurting. Don't give up, hang on to any thread of hope that you can find. People have no idea what a headache is - your boy friend will stay there with you and if he doesn't then accept that he was not ment for you. Forget about your weight, you can deal with that later. You are not alone - remember that - others do understand what you are going through. The best thing you can do is educate yourself about clusters and what works for you. A day at a time and sometimes an hour at a time. You'll make it through. The people responding to your tonight care about you - and are sending you healing energy - be open to it and you'll make it thru the next hour. Take Care and God Bless Ray |
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Title: Re: I can't cope Post by lionsound on Feb 20th, 2005, 11:03am Lili-Laura, A lot of us have felt the same way, me included. We are here for you. We are listening. Please check back in to let us know how you are doing... be well and PF, lionsound |
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Title: Re: I can't cope Post by Lili-Laura on Feb 22nd, 2005, 6:14am Hi Thank you very much for all your messages. I didn't think there's so many people that care. Sorry to say, not much improvement in my mood. i just can;t cope! I don't feel like anything. And I feel useless and that everybody would be much happier without my sad face. I battle to stick to my diet. I feel like "cheat" food like chocolate milk (I don't even drink milk). I would like more support from the people around me but they all have their own lifes to live. I think I am just feeling sorry for myself. Thanks for caring and sorry for burdening you all. Laura |
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Title: Re: I can't cope Post by Gator on Feb 22nd, 2005, 10:50am on 02/22/05 at 06:14:31, Lili-Laura wrote:
We understand and we care because we've been there. Most non-clusterheads do not understand the physical and mental pain this disease causes us. They hear the word headache and immediately think tylenol or aspirin. Let's face it - if the doctors that treat us do not understand, most people won't either. We are lucky to have one or two people that we can talk to. Sadly, this website is the only support a lot of clusterheads have. When we get down on ourselves we tend to project our feelings on those around us so we can justify how we feel. Actually, I'd bet few people (if any) think you are a burden. You are the only one that can control how you feel. You can sit around feeling sorry for yourself or you can pick yourself up and move forward. It's time to retake control of your life. You've already taken a good first step. You have found a place to educate yourself on your condition. You have also found people that understand and can help you cope. Now take advantage of the new resources you have and get back to living. You can come here to ask questions and to talk/vent/rant when you feel down. Then hang around to pass on what you have learn to others. Wishing you pain free days ahead. |
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Title: Re: I can't cope Post by jasckorohod on Feb 22nd, 2005, 12:37pm You're not burdenign us, Lili-Laura, we've all been there. Here is a place where you can let all of your feelings out and no one is going to think less of you or think that you are some kind of weakling who can't cope and just wants sympathy. You have a real disease, it is not psychosomatic, depression comes with the territory (feeling down, hopeless, helpless, wanting to die, feeling like a failure, losing interest in everything that use to bring you joy, etc.). Those who really love you will stick by you. I've found it useful to give some people literature on CH, i.e., my boss, and since then is attitude towards me has changed for the better. Keep hanging in there, eventually a remission will come around and enjoy it while you can (I sometimes just sit and marvel at how nice it feels to be without pain). By the way, what country are you in? Your flag looks like the South African one, but I'm really not up on flags. I'm an American living in The Netherlands; if you are living in Europe, let me know and I'd be happy to talk with you on the phone. You might want to find a psychologist, psychiatrist or social worker who specializes in helping people with chronic pain-they can also help with the depression if it gets to the point where medication might be needed. My thoughts are with you. John |
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Title: Re: I can't cope Post by maureen on Feb 22nd, 2005, 3:23pm Laura You could never be a burden to anyone of us. Most of us have been where you are, that is why we are here now to help others as well as helping ourselves. Many of us came looking for this site because we felt alone and misunderstood by our friends and family. This site has become a second family to many because they truly know what each other feels. The one thing we can give is support from our hearts because we truly understand. Just getting out of bed in the morning and doing what you can to make it thru the day, shows your a survivor and deseves a pat on the back. My prayers are with you Maureen |
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Title: Re: I can't cope Post by TxBasslady on Feb 24th, 2005, 2:35am You can cope....you can and will pull yourself out of this state you're in. We've all been there....and sometimes it's a bit tough to get outta that rut. Your family and friends may not understand, but there are hundreds of folks here..on this board, that do understand. You're not alone.....this board is full of great support. All you have to do is come here and vent or ask any questions you have. Then....you need to understand that the answers to your questions, come from folks who suffer just like you do. You need to stay...and continue to enjoy this great support. It's the best there is. CH is a real bitch. You have to take hold of yourself and never let the beast get the best of you. It's not always easy.....but it will get better. PF vibes, Jean |
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Title: Re: I can't cope Post by Ellick on Feb 24th, 2005, 3:33am Fighting it when you are feeling so down and out is so hard but even the smallest fight leads to winning back control. Keep fighting it, even if you can only do bite size bits. Dont let it beat you. There will be an answer for us all one day. Give those who love you the respect of letting them help you. If there is any power in thought lots of it has come over your way. Chin up. Love ET.x |
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Title: Re: I can't cope Post by Cooked Brain on Feb 24th, 2005, 12:56pm Dear Laura, we know, been there, felt that... But you can't give up, just like us heroes, we helped ourselves and are still here! [smiley=thumb.gif] This is the place you need for all the support and advise you need. Hang in there and keep writing on the board! Gator Mike, great post throughout but on 02/18/05 at 04:17:46, Gator wrote:
that one really hit the chord bro :'( |
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Title: Re: I can't cope Post by Alien Space Babe on Feb 24th, 2005, 3:24pm Laura - These wonderful people have been here for me and others in our roughest times.... We understand how you feel.... and listen to Gator - he's a smart one! [smiley=hug.gif] Lizzie |
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Title: Re: I can't cope Post by Night_Zombie on Feb 25th, 2005, 11:28am Dear Laura, Im with you at the min,some people laugh when I say I have c/h and say its only a h/a get on with it, It sucks but you can cope you feel you cant, but you just do. I just dito what everyone said and send you Hugs and strength [smiley=hug.gif] [smiley=hug.gif] |
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Title: Re: I can't cope Post by Lost_in_cluster on Feb 25th, 2005, 11:42am Hello Laura, I can say I frequently visit the moods you have. I force myself to go to work every day but am withdrawn and I can't seem to smile without it being fake. If it weren't for being a money maker in the house I would have a hard time going to work. But the hubby is going to school full time. I am not trying to get you down but descent days do come and I am learning when those days are and trying to make the most of it. Please don't loose hope we all can help you get through this. I am new here as well and find self getting on here frequently just to mingle with others who understand what I am going through... Take care and chin up. |
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Title: Re: I can't cope Post by TomM on Feb 25th, 2005, 11:58am on 02/18/05 at 03:07:05, Lili-Laura wrote:
You can. Yes, you can. You will survive this.[smiley=hug.gif] TomM |
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Title: Re: I can't cope Post by Frank_W on Feb 25th, 2005, 12:05pm Hang tough, Lili-Laura. One day at a time, breathing your way through one hit at a time.... "This too shall pass." Be strong. |
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Title: Re: I can't cope Post by jckgales on Feb 27th, 2005, 9:34am Laura, Hang in there. I found this site a few weeks ago, just like you no one gets it. well took all info from great people of this site ,printed lots of copies and passed them to my husband,mother, boss and my Dr. and finally got O2. If you dont have it get it. It worked wonderful for me. I also use zomig (dissolving) at the first twing of pain. I am a chronic and have not been free for year and half. So hang in there. jackie |
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Title: Re: I can't cope Post by jokrs2 on Feb 28th, 2005, 2:11pm Dear Lili-Laura. You are a blessing and shall be a blessing to many. I just found this site this morning. I cannot tell you how many times I have apologised to my wife, children and family. Gators advice is awesome!!! Understanding this disease and KNOWING you are getting better from this moment forward WILL give you great hope. I was in so much pain a few days ago that I told my son I wanted to die long before he was born. No 12 year old child should ever hear that from a parent, but I showed him this site this morning and he has a bit more understanding of the pain we all suffer from. I also let my son know that he is the reason why I choose to live. All we can do is fight to show those close to us that we love them more than we hate our pain. Prayers & Blessings, Joe |
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Title: Re: I can't cope Post by E-Double on Feb 28th, 2005, 4:33pm YES YOU CAN!!!! Great advice above....... Click here and follow up..... http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=general;action=display;num=1105191315 This got me emotional and seems to have kicked many rear ends into place when we need it most! Hugs to all!! Eric |
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