I have been married for 21 years I came down with FMS/CFS about 15 years ago. My husband has decieed that I do not help him enough financially and says he knows of many people much more "ill" than me and work. I am 51 years (old and still have 2 teenagers home. My oldest is 27 and is on his own. My husband has gotten increasingly abusive (emotionally and verbally) and thinks I exagerate my symptoms. I have never been to a support group about this. Since he has been so unsupportive, I have been in a continuous flare up for at least 3 years. Before that I was writing a book, studying to be a yoga instructor, and was a Reiki Practitioner. Now I do nothing I was wondering if anyone else experiences this from a spouse and has had a flare up for so long and not able to work. I might add,...I have not slacked when it came to the kids. My house is not perfect, but is ok. My husband considers me abnoral. He left me and the kids in January because I refuse to change my ways. Anyone else experience this?
My hubby didn't understand this at first either. He would just touch me and it hurt. My flare this time started in Oct. 07 and has not let up. The only way I got my hubby to understand was to find all different websites that show all the different symptoms. I didn't know that you could hurt so much by just being touched. I told him it was from my being overweight I always said I guess fat hurts. UNTIL I went on different websites and seen that that is one of the symptoms. And everyones symptoms can be so different. Maybe just google fibromyalgia symptoms & either forward it to him by email or print it out for him to see. It may show him that OH she isn't being over dramatic. I worked for the same company for the past 18 years & my doc put me off of work in Feb. because I just couldn't keep going. The excrutiating pain isn't as bad but I am still in alot of pain. My husband hates going shopping with me because I can barely walk around the store anymore. I hope this helps some. Show him all the different sites that have all the different symptoms & maybe even let him see this website to see that it isn't in your head. Good luck
Sorry forgot to mention that I have been suffering off and on for the past 24 years. I was misdiagnosed with lupus,hepatitis & rheumatoid arthritis. I was just diagnosed in Jan.08 with FM. I think the only reason I was diagnosed was because I finally had enough of I DON"T KNOW WHAT IT IS from all the docs. I had to push & blow my cork because I just couldn't stand the pain anymore.
Hi, you must be feeling angry, frustrated, helpless, guilty, ill, in no particular order. If you speak to anyone- and I'm glad you came to this site- they will tell you that, however wonderful their family is, after the first few months , unless there is an earthbound angel amongst them, nearest and dearest feel all the same feelings as we do when we're not believed. They feel bitter and helpless that that can't make it better, angry with you for not being the wife/mother they knew, scared and most blame you for going to doctors and not being cured.
They know all the details. They know you try , but when you have a good day, then the next day have to rest most of the day, it's difficult and frustrating to understand. First you're in bed asking for a drink, then you're up and dressed, then you're in your nightclothes again. Can cook, can't cook, vacuum too heavy. You are tearing your hair out. Get someone to help do the heavy work. Helooks down his nose and says its obvious the hired help has been today. In England, (London) we are given carers to help for a few hours a week. If we can't afford it, it's free. She, too is called the hired help.
Of course you can't work and of course all the stress has made you worse. He needs shaking for making you feel so bad.
My husband is great but, over the years, as you can tell, if he's been fed up he will come out with really hurtful comments. The trouble is, I'm usually too weak to retaliate. I'm getting really tired now so will write again but, briefly, I have a wonderful social worker who has calmed him down several times. Trouble with men: They have to fix things, if they can't, they feel they've failed. You can't fix illness or emotions. Most don't realise that they don't have to do anything, just give you a cuddle. Have you thought that maybe he's taking out all his own fears of not being able to manage financially or to cope with your illness? Using transference? Action For M.E. (CFS) brilliant. Magazine four times a year, v.useful phone numbers. Just makes you realise you're not alone.
Tell your dear husband that you did not write to 1a, Heaven and request this lovely condition, it came all by itself. If he opens his mouth to you,DON'T APOLOGISE. You didn't do it on purpose. Tell him that before he offers any opinion he needs to do his research and read some books about the condition, you will then be able to have an intelligent conversation with him on equal terms. Tell him you are quite happy with yourself and your ways and see no need to change them. However, if you had a magic wand you would dearly love to be well. Ask him how he would feel if he was the one who was ill and you said that if he doesn't get better tomorror you're leaving. Ask him what he'd do about having a broken leg which you insisted he walked upon the next day or else you were walking. Palmo, it's a scary situation you're in but you really have to tell him that discussion, with no abuse, is necessary. YOUR rules are that you refuse to live with abuse -which he can stop, unlike you with your illness - and if he wants to come back he comes back on your terms, you don't gratefully accept him back on his. He is a bully - and bullies are cowards. Stand up to him, don't cry, don't beg, don't wear yourself out and make yourself worse.
Suggest maybe you could both see a cousellor attached to a CFS unit/ doctor/hospital?
Remind yourself every day that, ill or well, you're worth it, you are still the same lovely person but you have health problems. Your husband is metaphorically jumping on an open wound and then blaming you because it's not getting better. Don't let him do it. No-one has the right to be so cruel to you. Refuse to allow it.
Love and Blessings
Please remember that this isn't your fault. These are your husband's issues and is abuse is totally unacceptable. I hope that you remember that although you feel lousy and when we feel lousy... we are emotionally drained, that is important to not let abusers break our spirit and we CAN draw the line and have boundaries with these people.
I agree with everything Diane wrote... she summed it up very well. And know that you are not alone. I had to deal with a relative who made comments about CFS and I let her know real fast that her comments were unacceptable.
any wonder your fibro didnt settle if your hubby was being a jerk! Stress doesnt help one bit,i call these people ignorant to the extent of fibro,i've had for a long time too and i had to give up work 2 and half years ago.My man is supportive and anything i want to try to get better hes all for it(fiancially)as well as taking me to appointments.The only thing is during winter i turn the heating up so high he sweats and growls poor thing.The thing is there will be always someone somewhere making comments on what fakers we are.Us fibro folks should be united and kick some A.... Reiki I love it! Have had 98 sessions of it,and an 8 month remission,My Reiki practioner,is great!
I guess my previous post did not go through. I just wanted to say that I have given him literature, he says he has read articles, etc., etc. He also points out that most of those people work. He knows of people with cancer, with tubes hanging from them and they still work. He told me he is sick of my s---. He says I'm playing games. Previous to this marriage, I was married with a child in my early 20s. I wasn't in love anymore (good thing...I found out after I divorced him that he had cheated on me before and after the marriage). I was a full time working, single mother. I've always done something. Even when these children that I have with this husband were small I worked part time. Even when I came down with FMS/CFS I pushed myself. It took 5 years to find out what was wrong with me. My husband and his family think I am a lazy nut. As I posted in another comment, I recently found out I have herpes. I had suspected that he had an affair, but...He swears he hasn't been with anyone else Says I cheated on him with one of my clients. My clients dwindled because I was getting compex about working with other men because of him. Then I just couldn't work anymore. I'm just alone without support and so sorry if I ramble on. He just doesn't love or respect me anymore. This disease robbed me of my life. Most of the time I don't go on like this...I try to do affirmations, yoga,etc...but since I was dx with herpes a few weeks ago, I'm even sicker than I was. And then the thought of him with another woman! Anyway, just wanted to say thanks for listening.
Read your letter as if it was from someone else. What advice would you give them? I repeat, you are in a scary and unfamiliar place. But do you want to spend your life with a scary and familiar bully? I don't know how people manage in the US re. finance but there must be some help out there for people who need it. Anyone who has a long-term illness misses so much and there is a kind of grieving for the person you were.
If you possibly can, just for a while - or forever if you can do it- don't see him, his family.
Please get yourself some therapy to sort your head out, lose the "victim" mentality, realise what a sadistic bully he is, and get back that positive self image from wherever it is hiding. Come on, all that Reiki and mind control and peace. You must have a friend in the same line who can help you get you back and become strong enough to laugh in his sadistic, manipulative, controlling, selfish face.
DO IT. STOP BELIEVING HIS RUBBISH
since i have other health problem and depression and so forth.i have been told all you do is complain.like most i have good days and bad days,with what the do believe it is fibro.it hurts me because my son is so health kicker its not funny.i have tryed everything exercising ,walking,yoga,and mediate sleep meds natural sleep meds.lord the things i have done to find out what is wrong with me .yes i get a bunch of mess my 6 almost yr old loved to play dr i thought thank god someone understands til yesterday she told me she is tired taking care of people.i felt aweful.my son is at his ends to he is 15.my hubby thinks i am just crazyyyyyyyy!!!!! always got something wrong.yes i do clean but i was put out of work at 29 when i feel into a deep depression it runs in the family.now i get social security boy getting that took 7 years of messthey dont even know my other recent problems.and my weight has slowly increase as well,yes i am overweight now not the same wife or mom i have heard most from my son and husband.they are just simply tired of helping me so i told them all .i will leave so i dont burden you.all. i do things everyday no matter how i feel sometimes it takes me alot longer than alot people without this problem,but i do try and the mental and verbelfrom my son.and hubby no wonder i am on depression and panic meds too.i know how you feel.i have heard sooooooo many times you are to young for all this you hypoconreact.i hurt so bad during things everyday and thats my thanks.wooooo so i really know how you feel.so days i dont feel like moving i know i will hurt more but i do it take what meds i can to help but nothing is really helping alot.if you like email your email address i will email you all.
I understand you are not working and are probably 100% dependent on your husband to take care of you financially, but please get out of that unhealthy relationship. Please do not allow someone to belittle you and make you feel as if you are making this illness up. Fibro is a VERY real illness that can debilitate. If your husband cannot understand your illness and does not take the time to learn about what you are going through, he does not deserve you. He needs to shape up or take a hike. There are tons of programs out there that will help you since you cannot work. You can apply for disability. I understand it takes time and can take several attempts but it is available if you need it. There are pharmaceutical companies that will also help you with free medications. I have a list of several and will offer them to anyone who does not have insurance or a prescription plan. They will send you free medications if you qualify. There are SEVERAL and I'm not sure of the posting rules in here so please feel free to send me a message if you are interested in them. I ran across them while doing research on fibro. I also previously worked for a clinic and became familiar with the companies through the drug reps. The websites list which medications they offer help with.
Please understand that if your husband is abusive, it will only get worse. Take this from someone who grew up in an abusive household with two abusive stepfathers. I have also been in a verbally abusive relationship that ended because of the abuse. You deserve better than that. It is no wonder you are in a constant flare. The tremendous amount of stress you are dealing with is keeping you there. Your husband's constant abusive behavior is preventing you from feeling better. I do wish you the best of luck and hope that you make the right decision that is best for you, your health and your family. Keep in mind that everyone suffers in an abusive relationship.
I am going to post the link anyways and hope the post doesn't get deleted. I'm sorry but I truly do not have the energy to search for rules regarding this. I hope that someone will benefit from this site.
I'm also in your situation and know how you feel. I've been married for 18 years and my hubby thinks I'm "faking" too. I stopped working last October because of something my doctors believe is unrelated to FMS/CFS. I can't tell how long I've had FMS/CFS but it seems like I had it since my adolescence.
I'm financially dependent on him now that there's no indication I'll be going back to work anytime soon. I mourn the person I use to be and everything I've lost because of my illness -- children, work, friends, & time. I had uterine cancer in 2000 and was infertile so I never got a chance to have children -- good thing, I can barely take care of myself. I was determined to get my life back on track and in 2005 went back to college to finish my degree in social work. Unfortunately, my current illness prevented me to finish - I'm 2 classes from finishing. I had a great job with a city councilman and was going to school at the time when I got sick in October.
We have to stay strong and go where ever the support is, even if it's in cyberspace! I know I have to keep my head up and avoid my hubby from rubbing it in the dirt. Yes, it's true that one day we have and are capable of doing more and may not "look" sick but they're ignorant and cowards to prey on us. It's not easy being in an abusive relationship but do whatever is best for yourself.
Just concentrate on getting yourself better and lean on those who do understand and support you. Good luck to you -- remember that you are not alone!
That's abuse clear and simple. You say that your husband left you in January: is he still away? You don't talk like someone who's been single since January, you sound more like he's still there. If it is at all possible, I'd urge you to leave him. Domestic abuse generally destroys the victim's self-esteem, but don't worry if he's made you think that disability benefits are shameful, ignore that and get yourself on them. Talk to Women's Aid or whoever your local domestic violence/abuse group is to help get your head clear and understand what's happened to you, and yes, they will definitely consider that you qualify as a domestic abuse victim and have a right to contact them and use their services. A social worker may also be a good move. You need emotional support and physical support to help you with all of this.
My mother was in a similar situation for years, only in her case it was cancer and the health problems she had afterwards. My father sat on his backside not bothering to get a job all this time, and when they got divorced it suddenly turned out that he wasn't too old/depressed for the job market after all! I haven't seen him since the divorce, which was when I was 14. If nothing else, think about what this will be doing to your children. It's hell growing up seeing your parents in an abusive marriage, and I've blanked out most of my childhood as a result. People who abuse their partners are often abusing their children too, remember, and certainly my few memories of my father tend to be things like when he threatened to kill the dog or would terrify us by suddenly slamming the brakes on.
I've also experienced domestic abuse a few years after I developed ME, and like me I internalised the abuse and believed him when he said it was all my fault. It took quite a few years for me to get over that, and come to that it took my mother years to get her self-esteem back (about twenty years of marriage in her case, and they should have split up after five). Ten years ago my mother met a wonderful man who worships the ground she walks on and is incredibly attentive to her health problems. They're utterly lovebirdy and any time one of them is ill, the other one loses no end of sleep fretting over it. Both of them would be horrified at the idea of putting the other one down because of illness.
Two years ago I met a fabulous creature of my very own. He's only known me since I've been ill, and I've unfortunately been pretty d*mn ill since meeting him. It's not the easiest thing, we're living in a small flat and he has to be my carer (I have severe ME and am usually housebound, sometimes even bedbound - yesterday I had food poisoning and he was having to walk me to the toilet, sponge me down and so on) and rarely gets any time to himself. There was one occasion a year ago when he cracked under the strain and we split up for five days, but that was the only time it got that bad, though we do have the odd snarling match when things get difficult. We love each other dearly and we cope.
Remember that the absolute bare minimum you should have in a relationship is that the other person adores you, thinks you're wonderful, and believes in you.
Thank you all for taking the time to talk to me. I want you to know that I've had FMS/CFS for at least 14 years. I have never been on a message board or gone to a support.group. When I was dx, i thanked the doctor and went on my way. I began a spiritual path, started going to a health food store, doing yoga, mediitating, walking, gardening, etc..etc..I began writing the book I had always wanted to write, began writing poetry, began going to Toastmasters groups to hone my public speaking skills. went to open mike poetry reading. wrote a lot of poetry on the pain of fibro and also eating disorders. Ultimately, went to yoga teacher training because I was in remission for so long. It was 3 months into my training that I flared again. Between the money that it cost for my alternative therapies, my yoga training, etc that is when my husband began first being passive agressive (sleeping on the couch to punsh me) etc. He began resenting me for "going after my dream jobs:" and not working in a store or something like a normal wife would do to help pay the bills. He says that couples work together. Well, I did start making money teaching yoga, doing Reiki healing sessions. I think by that time he just didn't want me any more. I was only making maybe 100.00 a week for a couple of months. Then there came a trauma to my daughter when she was 11. For two years everyday I focused on doing what I had to for her. Hence...what seems like a permanent flare up. That was four years ago. After 2 years of of dealing with what I had to for my daughter, we had to move to another town and start over. My husband has always been the passive type and so I was always the one out in front because I was never afraid to open my mouth when I had to (probably a combination of taurus and New York) I understand everything you are all saying. I may be sounding like a victim right now, but I have had no one to talk with about this. Even the therapists don't get it. I made my husband leave in January. He had left me 2 times over the last 2 years. Says I kicked him out. But I didn't. He just. pushed me to the brink of "seeing red" everey single day for 2 years that one day when he said "I'm leaving" I said "good. go". Then I would miss him and try to patch things up. This made hiim so much worse. I made h im leave in January because after him sleeping on the couch everynight for one year and saying I treated him badly because I refused to cook dinner for him or kiss him goodbye in the morning...I couldn't take it anymore. He said humiliating things to me everyday. He would watch every penny I spent. He refused to pay for anything that wasn't for a "real" doctor. I also made him leave because my daughter had such a difficult time with all of this and it was affecting her so badly. He was so abusive to me just so that I would be the one to make him leave. Something about "abandonement". He says now that he didn't leave, I kicked him out. So, I don't know where that leaves me legally. I know that I'm rambling and probably don't make much sense. It's just been a living hell for at least four years now. My manuscript has collected dust. I don't even do my own yoga practice anymore, let alone teach. I'm taking SAM E right now and I hope it will help because I'm EXTREMELY depressed. I'm in a lot of pain and feel like I have the flu every day. The therapist we have been seeing (separately) doesn't really see how abusive he's been. I've been trying to get him back again. I don't know what is wrong with me. He hasn't even talked with or contacted his children in months. It's like he walked away and forgot he has a wife and children. And it makes me so damned angry. He's "never done anything for hiimself. Always doing for everyone else. Now he's "finding" himself". I just don't understand how someone can just walk away ffrom their wife and children. I don't understand how he still says he loves me and either is putting me down completely (only after I've contacted him) or just acts as if we've never existed. I am so terrified. Feeling so sick has kept me from being the person I've always been. All I'm doing here is venting with people who have gone through it. My husband's biggest gripe is that I haven't worked and "contributed" financially like any normal wirfe. Evereyone he knows he says they work "together". It just hurts so much. I have been an excellent mother . And my children know that I've always been there for them. My oldest is 27. He owns a pilates//yoga studio in Portland, OR. My 17 year old son has published one book and is working on his second and third. He is also a poet. My daughter is an amazing musican, artist, dancer, poet, anad writer, and talks of possibly going to school to be a theoretical physicist. She is talking of writing a screenplay. As am I. I have at least 3 movies in my head. As well as numerous books. But all of this has been very hard on them. They hate seeing what has become of me. I do know that I am on the threshold of a wonderful, new life, but I'm in that very dark place right now. I can's seem to connect with my passions anymore. I am numb. Well, not completely. I have been letting myself feel my feeling lately. Which is actually a good thing. Having had an eating disorder for 13 years, it is a miracle that I let myself feel, and cry and scream when I need to. I used to just "stuff" it all down. My spiritual path is helping me with all of this as well. I know I can't just sit around and cry all day either. I just needed to tell someone who doesn't think I'm crazy.
Congratulations to you for reclaiming your power by asking your husband to leave ! It is soooo difficult to do this, especially when we are wiped out physically & emotionally. But I think in the long-run... it is important for our healing and I hope that you do continue to heal.
I hope that you will continue to post here. And since you have CFS... the results from Dr. Montoya's Valcyte trial are due out soon. At least that is an option that apparently has been curing many CFS patients, even the co-founder of PetsMart. If I remember right, he & his business partner were diagnosed with CFS after they had the flu. He was on the original Valcycte trial and was disabled when he started the therapy. It's been at least a year or two now and he has his life back... he's even jogging again ! So picture yourself getting well and then jogging right past your husband !!! ; ^ )
Thanks for your encouragement. I actually physically had to force him out in January. He would not stop insulting and humiliating me. He is much bigger than I am (6' 2") I'm 5'3". Anyway, I have gone back and forth wanting him back because I have convinced myself that I love him. It has broken my heart. Now that he's out, he got his way. He didn't want me anymore. The way that he did this is cruel. I am still grieving the loss of the marriage and myself. I do know that out of this will come my purpose in life. I know that it will come through the program I have floating around in my head on the deeper meaning of illness. It has to do with the book that I began back in 2001, the yoga, the meditation, and the poetry. I began to feel today that the time has come to feel the flame of the pain and walk right on through. What has happened in my life, especially in the past 4 years is so downright, absurdly cruel that the only thing left to do is MEDITATE! There's a pseudo-Buddhist saying, "...don't just do something...sit there!:" Well, I used to do that but with my notebook in front of me and that's when I conceived my book...in 2001. I guess my book took 9 years to birth, not 9 months...hmmm And it's turning out to be every bit as painful!
Please keep me update on that med trial you mentioned. Thanks
Oh yes, although I have not been tested or diagnosed with Fibro, I do have many of the symptoms. Waiting to get on insurance at my new job to go to doctors. Anyway, I have chronic pain, pretty much everywhere...but more so because of my heel spurs and back, as well as headaches. I am so close to being not able to work...if something isnt done. My fiancee doesnt really believe me. He talks about other women who work 2-3 jobs, yadda-yadda. I am depressed because of it. He thinks its all in my head. My pain started at age 17 and after a gastric-bypass nearly 8 yrs ago has been getting worse and worse for some reason and I cant get doctors to find out why and to help the pain...yet!
My husband would love you. At least you have been working steadily. I for many years did not have insurance. I know how it feels. Even now iwth insurance, my husband still gets so mad at me for the money that is spent. I have currently begun to use Chinese Medicine and Qigong mixed with yoga. I began these things back in 2001 and because of the money, my hussband got angry. But I'm at the point where I have to put my health first. I'm using tow ptoducts that I heart wonderful thngs about from an auther named Solala Towler. He has a website as well. He had CFS for 10 years and this is what helped him. I've read that Qigong also helps FMS. The two supllemenets are from TAOOFWELLNESS.COM. They are 1. The Five Elements, and 2. High Performance. Solala swears by it. Also there is a liquid product cal Noni, which can be bought in any health food store. A friend of mine says she barely has any FMS symptoms after using it for 6 months. 2 more things I am going to use are a product called Zrii and a product called Bachavhan sp), both of which can be purchased at Chopra.com. They are more Ayurvedic (healing system from IndIa) I myself have know about these things for years, but I really caved in to my husbands abuse. If these things work, it will cost far less than the constant dr visits and the high cost of rx, not to mention side effects from these medicatoins. These things should also help with depression. A great movie to get would be by Louise Hay...You Can Heal Your Life. The movie is great and so are her books. I have been trying to repeat the mantra (affirmation) "My body has now restored intself to its natural state of perfect health! Thank You!" I've also been doing something I learned in therapy a few years ago. While rubbing your heart area in a circular motion, you repeat the words at least 3 times, "I deeply love and accept myself even if I am afraid (you can subsitute the last word for any specific fear). When I do these things, it does help. Sometime it just helps to get it all out on one of thes message boards as I am finding out. Just remember, as I try to remind myself, his s--- is his, and my s---is mine. Good luck to you!
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