WHEN IS IT THE ILLNESS, WHEN IS IT ENTITLEMENT

Discussion in 'Fibromyalgia Main Forum' started by ldrerup, Feb 13, 2003.

  1. ldrerup

    ldrerup New Member

    My husband is Bipolar 2, reoccuring major depression and has fibromyalgia. He is disabled and sits around or sleeps day after day after day. 3 years ago he was put on Prozac, then switched to Celexa then Lexapro. I don't know who he is anymore. I think he is overmedicated, but he keeps telling the Dr. he is still depressed and the Dr. keeps upping the medications. He's on Lexapro, Zyprexa, Visteril, Tegretol, Gabitril and just recently Norvasc and Lipitor. He used to be outgoing and affectionate, now he never touches me, sex is once a year and I feel like his Mother. He says he's in too much pain to help me with anything, while I work and do every thing for him. I am getting so angry, how do I know if it's the illnesses, the drugs or he just feels entitled because he is disabled?
  2. susabar

    susabar New Member

    My husband is also bi-polar and on alot of the same medications as yours. Recently Leprexo ( or however you spell it ) has really helped him tremenously !!! He was alot like how your husband sounds, slept most of the time.
    In fact he almost got alittle manic from it so they upped the tegretol too. He is highly functioning now. I am the one with fibromyalgia however, so we are two sad sacks !!!
    I hope something will help him like a medication adjustment... I KNOW what your living and it is not easy!!!
    I will say my husband is very sweet, and loyal, and loving etc etc... when he is awake. I have learned to accept his limitations, now I am struggling to accept my own. ( I was just diagnosed in Nov) Marriage is tough enough with two healthy individuals. I'll keep you in my prayers, it was great hearing that my situation isn't unique !!!
    Good Luck
    Sue
  3. amilyne

    amilyne New Member

    hi, my mom is bipolar, has post traumatic stress disorder and is also depressed, she takes zoloft and says that that helps her the best of anything she has been on for the depression and she also is taking lamictal and seroquel..which also seems to help...she has been on numerous medications and some of those are depakote(sp)..zyprexa,and im sure plenty of others..she does ok but she is usually on only 2 maybe 3 meds at a time..im by far not a doctor but that does seem like alot of meds to be on though i know that some of those meds are not for bipolar or depression. well thats my two cents..hope that helps some.
    --ami
  4. talldi

    talldi New Member

    Your husband is an angry human being and is escaping dealing with his life by being legally stoned. You should talk with his doctor and see if you two can have a joint therapy session and try to work things out with medication. He may indeed have fibro. But as we all know you can live with pain every day and still have a life. You can still have pleasure you can still love. And you have the right to have your husband. He may be different and bipolar is an illness that doesnt go away. You will have to decide if you can love and live with the person he is now with this illness, Not the drug addict he has become. If he cant or wont make the effort for you to salvage his life with you than you need a good lawyer.
    good luck
    [This Message was Edited on 02/16/2003]
    [This Message was Edited on 02/16/2003]
  5. garlinbarb

    garlinbarb New Member

    He is on a lot of meds but is functional. He doesn't take as much as is rx'd for him because he says he can't do anything if he takes as much as is rx'd for him. He doesn't tell his doc because that would be considered as being non compliant.It's like the docs WANT him to stay in a stuper all the time.
    He has been ill many years and does very well for someone in his condition.
    I would talk to his doctors and if you aren't satisfied with the response you get look for a new doc if possible.

    People with invisible illnesses are often harshly judged by others. Please don't assume he is doing this on purpose.

    My bro and I make quite a pair with our various illnesses.
    I do get pissed at him at times, but I do not ever for one second blame him for his illness.

    Please take care of your own needs as well. This is not only for you but for him and your marriage as well. You will be better able to care for him if youdon't make a doormatt of yourself.

    God bless you and your husband.
    Barb
  6. missvickielynn

    missvickielynn New Member

    ....and I am wishing I could hear what HE has to say about what he is going through!

    I am also wondering if you are aware that there is also a "Caregivers" board for the families and other significant people in the lives of people with chronic illnesses. Perhaps you might find some helpful input and understanding, and even education, there.

    I have re-read your post over and over, and honestly I can only hear you talking about how his illness is inconveniencing you! I am not trying to dismiss your feelings, or make light of your complaints. I know first hand, as do most of us with CFS/FMS, etc., what it feels like to have our feelings and frustrations, etc., not taken seriously. But I honestly don't hear any compassion for your husband in anything you have written. Do you really think you are "suffering" to the extent that he is?

    I have never been diagnosed as Bi-Polar.....but I do know that there is a distinct "bi-polar" aspect to these illnesses (Fibro, CFS, etc.) There are many times when the bad flares, which bring with them a SECONDARY depression, just disappear as suddenly as they hit. And when the flare has been particularly bad and/or long-lasting, the swing to a "good" day can feel almost manic.

    It is nearly universal in these illnesses that we feel and seem manic on good days, because, for one, the contrast of the pain, fatigue, and other symptoms of a flare to the relief of a "good" day can be so dramatic. I don't know how many times I have said (and heard many others with FMS/CFS say) "I cannot see how I could possibly have been feeling so terribly ill and in so much pain yesterday (or even 3 hours ago), and feel this much better now. Then, of course, the opposite sudden swing from "good" day to flare, is just as dramatic, and causes severe depression for many reasons, which should be obvious.

    So, the fluctuations, often unexplainable, of the illness, is one of the most frustrating aspects of these DDs.

    But one of the MOST difficult aspects of living with these illnesses is having to deal with the judgemental lack of support, and the assumptions that are made about us, by those people around us. This hurtful and destructive disbelief, and lack of understanding, comes from the people who are (1) completely, or at least, barely, educated about the illnesses, and (2) probably CHOOSE not to put out the effort to learn about the illnesses, and (3) often CHOOSE not to be confused by any facts that they are given about the illnesses.

    My suggestion to you would be to FIRST, decide if your love and concern for your husband is strong enough for you to be willing to continue living with him, given his chronic illnesses.

    After you search your heart, IF you decide he is worth the trouble, then you should do everything you can to learn about his conditions......BOTH of them, and that means REALLY learn about them, including the reasons he has been prescribed the meds he is on, and the effects, both good and bad, of those meds.

    You could be correct in that he may be overmedicated. But with regard to that, first I want to say that I have heard and read many times that people with CFS and or FMS are often misdiagnosed with mental illnesses, and the two most commonly misdiagnosed are Clinical Major Depression, and Bi-Polar Disorder. Once the illnesses themselves, and the ramifications of living with the illnesses are understood, and dealt with appropriately by ALL concerned, the differences between the Mental Illness critera and symptoms, and those of CFS/FMS become clear.

    I agree that one of the main reasons that so many people with CFS/FMS have such poor or negative result from the various antidepressants.....even when they are given in the small doses that are supposed to treat the sleep and pain problems of these DDs.....is because WE ARE NOT SUFFERING FROM CLINICAL DEPRESSION.

    I don't know if your hubby has been correctly diagnosed as Bi-Polar, or not. But something is wrong if he is still depressed. My bet is that the EMOTIONAL AND FINANCIAL BURDEN, the pain and other disabling symptoms of FMS, the frustration of repeated unsuccessful drug trials, added to the burden of living with someone who appears to be uneducated about FMS, and unsympathetic about what he is dealing with, have resulted in a severe SECONDARY depression.

    And, from what I know about the drugs you listed, I can think of nobody that I know with FMS/CFS who finds that there is any "recreational" value to them. There is nothing pleasant about the effects of any of those drugs that would fall under the heading of "staying stoned" as it is usually meant. And in all that mix of drugs, I do not see anything listed that effectively treats THE PAIN OF FMS.

    If we are lucky enough to have the money to survive when we cannot work, and/or to have adequate treatment, or at least symptom management, including pain relief, and are lucky enough to have understanding and educated Doctors and family and friends, then the depression would lift considerably.

    If you do care, and are feeling frustrated and helpless....again, I say to you EDUCATE YOURSELF! Heck, why not learn about the FMS Tender Points and Trigger Points, and learn how to do massage and trigger point work for your husband. I'd give anything if I could afford to get trigger point therapy and other bodywork, as outlined in Devyn Starlanyl's Books about FMS/MPS Complex. But it would also be nice if I just had a compassionate friend, family member or partner who would do some of this for me!

    If you think he is overmedicated, then take the time to learn about what each drug is used for, and why he has been given each one, and help him to evaluate which drugs help him enough to be worth any of the negative side effects. But it certainly makes sense that if he were being given something for pain, he might not need to take some of the other drugs. Do you ever go with him to his Doctor appointments, or his therapy sessions? If not, why not?

    Like I said, I wish I could hear what your husband has to say about all this......since it is HIM we are discussing. Yes, of course.....it affects you as well. But being judgemental and unsupportive and uneducated is not helping either one of you.

    I am sorry if I sound harsh to you. I hope that I am mistaken that you may be like so many of "our" family and friends, and you really don't want to "hear it" any more, and you just wish it would "go away", but that you are not willing to do what it takes to be supportive of someone that I am assuming you care about, who is really suffering.

    It is much easier to just blame the patient, and assume he/she has chosen to live in pain and depression. This has certainly been true where my family, and all but one of my friends, is concerned. The don't want to hear any of the facts, and even if they do, they still choose to believe that CFS/FMS is a choice that I made, instead of REAL, disabling illnesses. They refuse to go with me to Doctors or therapist appointments. They just want me to pull up my bootstraps, so that I can go back to being the "fun, sweet, outgoing and caring" person that I "used to be", and back to tending to THEIR worries and illnesses, and stop being such a "downer", and an inconvenience and a "burden" to them, and a "drain on the system" (medical, SSA, etc.).

    If this describes the way you really feel, then, just like I did for many years (but finally gave up) with my family. I have probably wasted valuable energy, interest and emotion on this post.

    I hope that is not true, and that behind this diatribe, you will hear something that just makes sense. I hope you will "step up to the plate" and take an active, educated role in helping your husband deal with his illnesses. If you do, it will help BOTH OF YOU!

    If you cannot, then at least have the decency to stop "kicking him when he is down". That is what your post sounds like to me.

    I wish the best for your husband, and for you.......whatever that turns out to be.


    [This Message was Edited on 02/15/2003]
  7. kadywill

    kadywill New Member

    to EVERYTHING MissVickieLynn says!!
    Kady
  8. ldrerup

    ldrerup New Member

    I guess I should have given a more in depth history. My husband has tried to commit suicide repeatedly since he was 16. He is very intelligent and talented but his adopted father told him repeatedly he was stupid and worthless and he still believes every word. His sister said from the time she can remember he has always demanded extra attention. She said he would yell and scream at his mother until she gave in and gave him what he wanted. I have done quite extensive research into every illness my husband has had. I have been to almost every Dr. visit, so much that during the 4 1/2 years before he got disability, that all my vacation and personal days were days I took off to go to the Dr's with him. He is very non compliant, concerning his smoking, diet and exercise recommended by his many Dr.'s When he is very depressed he goes and charges something on my charge cards or spends money we don't have. He spent $4000 on a racing bicycle when he got his disability money, and now his car isn't running because he refused to check any of his fluids. Now he uses my car. He told me he has money coming in now, so no, he should not have to help me with anything. However, he does help his friends. I get called Bitch and just recently, the C word. I love him very much, but he has always been of the mindset that pills should solve problems, it is too hard for him to try. Not really trying to be defensive, just wanted to let you know there is a whole lot more to the story that I mentioned in the beginning and even more than I have said here. Please give me the address for the Caregivers site. Thanks for your imput and reminding me how much I really do love him
  9. sb439

    sb439 New Member

    Thanks for the additional information. I don't think anybody here doubts that you have a hard time. You have to take the contributions here as attempts to help. That's what they are.

    You can get to the caregivers board by clicking on 'mesage boards' at the top (in the purple), and then you click on 'care givers forum'.

    Do you think your husband would find it useful if he could join the FMS/CFS board? He wouldn't have to write, he could just read, perhaps it would help him. (You can always delete your own contribution.)

    All the best,
    Susanne
  10. talldi

    talldi New Member

    Again I say, even with the further info that you are living in a household that shows addictive behavior.
    If you don't want to leave him, than do what you need to do to take care of yourself. Stay with him if you want to, but TAKE CARE OF YOUR OWN WELLBEING!!!

    First: Seperate your finances. Open a savings account in your name only. Open a seperate checking account and put money in it every payday. EVERYSINGLE PENNY that you can spare should go in the savings. Ten cents is ten cents that is yours. When you return bottles put the money in the savings, don't spend it. If you win a two dollar lotto, put it in. Empty your purse every Friday and put all the change you find in the bottom in the account. Clean the sofa and chairs and put the change in. If he leaves change about the house take it. Don't take it off his dresser or his space, but anything in joint territory is fair game.
    Use the checking account for important bills like electric and motrgage. If you know when his disability is coming in, (there is ususally a phone # you can call to see if it has been deposited, I would hope you have electric deposit If not set it up)Anyway when the check comes in take exactly HALF for the house and put it in your account. If you have to wait for him to give you money for bills, than always ask for ten or twenty more than you need and put it in the savings. Remember, as his wife you are entitled to exactly half of everything he has.
    I even found a box full of gambling winnings once in the house. My lawyer told me to take exactly half and put it in my account. Close all the joint credit cards!!!
    Do it quick!!!! I had to declare bankruptcy.
    I was in no position to make a move until I was financially sound footing, I had 3 children. It took me 5 yrs in therapy after finding myself standing on a bridge in the depths of despair and unhappiness to finally admit my husband was broken ( I was married for 16 yrs )and I was not responsible for his breakage OR his repair.
    No one can change unless they want to. There is not enough love in the universe to "fix" another human being unless they want to be fixed. Yours doesn't want to be yet, and may never want to. It doesn't mean YOU are a bad person. He has no reason to change does he , after all. He has you ( and your children if you have any) to belittle and make himself feel superior, and your behaviors(or lack thereof) gives him an excuse to 'get away" with the "guys" and do whatever he pleases. Because if you would only 'do more/ be more/have more' please feel free to fill in the appropriate blank complaint. Please believe me NOTHING will ever be good enough. The house will never be clean enough, the children quiet enough, you will never be thin enough, have the right clothes, haircut or intelligence to make him happy.
    The fact that you know why he is ill and acts the way he does is not an excuse for his behaviors. There are plenty of people out there in the world that come from worse background. Some of them probably even with bipolar illness. Its nice that we know enough now medically to diagnose bipolar illness ( and fibromyalgia etc too)and even treat it. But I am sure your husband knows he needs to have intensive therapy too. If he is not willing to go, than you have an answer to the big question don't you?
    It means he doesn't or can't love you enough to get well. You can't help him if he won't help himself.

    Second: Do not under any circumstances contribute to his addiction or addictive behaviors. Don't buy any liquor, cigarettes, or drugs for him. He should be drinking niothing stronger than water with his meds he is on anyway, and as his loving wife you have reached a point of concern for him that prohibits your contributing in any way to something that is not good for him....See how easy it is to play word and head games? You will find you can get very good at it too, maybe even better than he is!! Do not allow him to manipulate you into doing so. The old "If you loved me you would..." You need to set limits on what behaviors you are going to tolerate. You have to care about yourself and believe one important thing:: You CAN live without him. You may not WANT to right now.... But you don't NEED him to survive. He is probably one of the triggering points for your FMS. My ex was definietly.

    Third: The only real question for your future is this:
    Can you live with this man the rest of your life aching and unfulfilled in love. Because the sad truth is this: He probably DOES love you, but he is not capable of giving anything more than what you have RIGHT NOW.
    In other words is what you have right now enough for forever??
    It IS true that he NEEDS you. He is the one who is not functioning, not you. He needs you to validate himself.
    But needing someone is not the same as loving them.
    You have what you have and there is not ever going to be more. If the answer to your question is "Yes, it is going to be enough for me", than start setting limits and make yourself a healthy life next to him. You can't be WITH him or you will self destruct. High blood pressure, depression. heart trouble, stroke etc.
    Insist on time off to vacation by yourself, go places without checking in, enjoy movies , concerts whatever with friends.
    Stop attending doctors appointments with him. It is HIS responsiblity to get there or not. It is his responsibility to get a car, car insurance etc. Let him sell his bike or use it ot get to the appts. You don't owe him YOUR car to have an accident in so your insurance rates go up.( seperate those too from his by the way liability is a killer and the person he hits isn't going to care if he's mentally ill or not)
    You are NOT responsible for his illness, unhappiness, clean clothes, meals whatever. STOP TAKING CARE OF HIM!!!!He is a grown man even though he has an illness.
    If he decompensates in his illness and has to be institutionalized ( in a hospital or correctional facility) IT IS NOT YOUR FAULT!!!! He is making the choices.

    Fourth: Join Al-Anon and get your children in too. They have teen and youth meetings. Remember if you do have children that they are learning how to relate to significant others by watching him AND you. Believe me history does repeat itself. Be a strong example, take care of your life and theirs. Believe me the anxiety you are feeling is because you are trying so hard to control him your own life is out of control.


    Be strong. Do everything for yourself ( and your children if you have any) and with each little step toward self fullfullment you will be stronger.
    Go into counseling with a good womens/childrens/advocate therapist. Call the local womens shelter or services for names. No he is not allowed to go with you or help you pick one. You will need alot of private therapy before you will be able to make the break.
    But do the financial stuff RIGHT AWAY. I waited too long.
    Again good luck. I speak to you from experience. I am 13 yrs divorced now from him and he tells the children he doesn't know why I divorced him as he did everything for me. I met my soul mate after 9 yrs of being alone. God brought him to me in answer to a prayer I said every night... Please Lord bring me someone who will love me as much as I love them...
    Melody Beatty has written some excellent books on co-dependency and you might even be able to get them thru the library or of course on line. Used copies are probably available at Half.com
    Start learning to care for yourself not someonelse. It is a journey that is excruciatingly painful but it ends with great peace.
    You can write to me email if you like. I have some other excellent refernce books for you if you like. Talldie3@yahoo.com
    Sincerely di

    [This Message was Edited on 02/16/2003]
  11. JP

    JP New Member

    I guess that I do not believe in entitlement in the truest since of the word-especially in our 'market' society. I always believe that there is much that we can do and so much to be done. And, WE need to realize that the cost of our illness is a changing variable, moment to moment. I do not have the answers and I do know that we seem to gain small amounts of enlightenment when we are ready. I hope these words do not come across as unformed Jell-O...they mean something to me today...wish I could be more clear. I hope you find some comfort today.


    Take care,
    Jan
  12. Bambi

    Bambi New Member

    list and I don't see a real anything terribly addictive either. I think it would do you a world of good to
    research bipolar disease also, as it
    is a chronic and real mental disease.
    The behavior you describe about his money spending etc. is common in the
    hyper end of bipolar flares. I have
    a friend of many years that has it and it's a terribly difficult disease to live with, they don't do it for the FUN of it. Add FM to it and he is
    fighting an awful UPHILL battle all the time. Sounds to me he needs a new
    Psychiatrist to prescribe his meds for the bipolar and a doctor to prescrible for his pain of FM. It would be a very delicate balance since both FM people AND bipolar people react very oddly to different medications sometimes. Has he at least tried Lithium? It has helped many and Depakote and his Tegratol are the ONLY meds I am aware of that are currently working for bipolar disease. There is research going on about the fish oil products
    I think. Your husband is a very ill person just with the bipolar, and suicide is very common to that disease. Also with FM, some of Kavorkian's patient's were FM patients. He needs proper medical care, a HUGE amount of love and understanding, therapy and proper pain management and the sooner the better.

    You might ask your doctor about anxiety medication or
    biofeedback or something while his
    needs are met. You sound very stressed out, and it doesn't have to
    be that way. He will never be "normal" but can live a very satisfying life if he gets the right help. While the jails are full of bipolar people, they can also be and usually are very bright, talented and fun to be around when they are feeling well. One article I read on the subject researching for my friend said "They desperately need a friend but are sometimes incapable of being a good friend". I have had some of those moments with my friend, many in fact, but over all our 25 year friendship has been the best of my life. I was willing to hang in, many aren't unfortunately. Hugs, Bambi
    [This Message was Edited on 02/16/2003]
  13. ldrerup

    ldrerup New Member

    My husband takes tegretol and Zyprexa for the Bipolar 2, Gabitril and just recently Perceset for the pain. His Psychiatrist gets him the Lexapro,Zyprexa, Visteril, Tegretol as samples so we are afraid to switch to another Dr. because we would not be able to afford the meds. This Dr. pretty much gets him all bis meds for just a dispensing co pay of $3.50 ea. Another Dr. might change his meds but if we can't afford them he can't take them. His medicare HMO only pays for generics, no brand names.