spouses about turn?

[saints.mama]

style_emoticons/<#EMO_DIR#>/sad.gif has anyone experienced having their husband (or wife) come to all the hospital appointments and all the doc visits then for no (apparent) reason, start telling you if only you'd get off your lazy a** and DO something you'd be fine? i never mention my illnesses to anyone at all unless im asked but hubby now says i go on and on and what the **** am i moaning about anyway? its not as if i have cancer or anything serious!! i think he's flipped. it's meant to be out 30th anniversary in july but we're splitting up as i cant take the emotional abuse anymore. then he'll come over for a hug n say "i didnt mean it, course i love you, you know that!" then its all my fault again as i can't hug him back cause i know he'll just go back to being the same again. laughter is a no no in my house and if we have visitors and i laugh or smile, it's cause i fancy the male visitor! good manners dictate that if someone comes to see you, you make the effort if possible to get up and say hello, well hubby says thats how he knows im fake cause i can get up for them but i don't for him!! my face is really red just now and ive got the pinprick blood spots, don't know if thats the lupus or the vasculitis, or maybe it's just the crying. ive lost nearly 4 stone in weight (52lbs) in the last year and he tells everyone im on a diet cause i want to be young and flirt again!! i've lost the weight because ive been so sick i can't eat half the time, never mind go flirting with anyone!! what do i do? the stress is killing me. any ideas as to why he may have changed? he will NOT talk, he just says that i've got to change and its all my fault. style_emoticons/<#EMO_DIR#>/aww.gif i sometimes feel ive had enough of this struggle, i don't have a single sole who understands what im going through and im fed up with the hypochondriac label, even with medical evidence to the contrary. any ideas please? sandi

SLE, APS, RAYNAUDS, FIBROMYALGIA, VASCULITIS.

[confused1]

I don't know your husband, but as a general rule, when a person's personality, actions, habits or behavior goes wildly off kilter -- it's time for a physical. Maybe your husband is in denial, maybe he's just exhausted and afraid, maybe he's just plain out of gas. But when you added the part about him thinking if you laugh that you're flirting....that just sets bells off all over the place. It's time for you to call his GP and fill that person in on the strange behavior of late and then send husband off for a physical. If it all checks out fine, then maybe joint counseling could help ease the tensions and give him a way to blow off steam. I know my husband has no one he can confide in or vent to. Makes it hard.

Good luck,
Sunny

[saints.mama]

style_emoticons/<#EMO_DIR#>/Thanx.gif thanx both of you for your help. i've tried him to see a doc but he refuses (says im obssessed with sending everyone to docs!) if i try to get him to talk them im just looking for trouble. i'll try him again about councelling but he usually says he cant take the time off work and none of the councellors seem to work evenings or weekends. i feel backed against a wall, he'll just tell folk he doesn't have a problem, its all in MY mind. thanx anyway guys, im grateful for any pointers right now. sandi.

[zara]

What a terrible situation. You are right to leave it. Reach out to friends and family during this time. You will need a lot of support, and of course, we are always here for you too. Take care.

[sadieone]

Hi Sandi,

I'm sorry to hear about your hubby problem. It sounds to me he has two things going on. 1. him being insecure about himself. 2. him being in denial about your illness. I'm willing to bet the insecurity was there long before you were dx'ed.

It seems as though everyone has given some good advice, counseling, physical examination etc. and if all else fails leave the situation.

This is exactly what i did,, my husband was acting the same way. I was divorced from him for a year before i found out i had lupus. It was the best decision for me since I tried everything else to make it work but it was taking a toll on my health.

Just woke up one morning and said,,, I can do bad by myself,, so i need to get rid of all the bad things in my life. I called it "cleaning out the closet".


Good Luck,
Sadie

[pauline1946]

All good advice above,so there is nothing i can add.
except sometimes the best defence is a good offence.

Hope you get it worked, stress is not a good thing
for lupies.

[LilliesPad]

Hi Sandy,
Maybe he's going through a mid-life crisis - how old is he? His sudden turn about sounds exactly like what my brother did when he was about 55. He ended up leaving his wife of 30 years and married a younger woman. I think men go through menopause too! Just a thought.

Best of luck to you and I hope this all works out.

Lillie

[Raglet]

that accusation that you are flirting is a red flag for me - take a look at this link, and if you identify with anything on this wheel, then it may be that you are in a controlling abusive relationship. You don't have to be hit to be abused !


http://www.ncdsv.org/images/PowerControlwheelNOSHADING.pdf

Accusing you of flirting is actually a way of keeping you isolated coz you end up not wanting to talk to anyone incase you get accused of flirting - and the more isolated you are, the more control your partner has over you.

anyway, if this is the case, then there is lots of help available for you out there - I work in this area so I see it a lot

hth

raglet

[chantal]

style_emoticons/<#EMO_DIR#>/blink.gif thats just grrr ...man its bad enough when people we don?t know too well make those assumptions about us, but he should know you well enough to know better! Im sorry u guys are splitting up but I think it?s a good thing because you don?t need that added stress in your life your going through enough already!!
style_emoticons/<#EMO_DIR#>/foryou.gif

[ladyjane]

Having just turned a corner (which has taken some 20 years of abuse and neglect to come to a head and two years to get round the corner) I can honestly say do not waste your time on your hubby if that is his attitude. Try counselling as a couple and individuals, and ask yourself if you do really love each other or just become a habit.

I divorced my husband after suffering many years of his attention seeking only to find out he had a personality disorder (I am not suggesting yours has though) but now if I feel like having a 'lazy day' then I do and not have to explain to anyone why. If I want to get up in the night and watch tv as I cant sleep I do rather than get him shouting at me for disturbing him etc. The best days work I ever did was walk out with 4 children, not easy took planning and I am still going through intimadation etc but at least when I am home I am home alone with the children doing what I want without judgements. This alone has made my illness better due to lack of stress from him. It isn't easy on the legal side of things and you do have different worries which can wear you down but believe me we have enough to worry about without critisism from others etc.

The only good thing from my illness was my parents were worried I would return to him as I had done before but in the end to convince them I told them that if I had a choice of him returning to us or getting rid of my illnesses I would put up with the illness. Enough said.

Good luck in whatever you decide to do. Be a bit selfish and just concentrate on you for a while.Keep in touch. style_emoticons/<#EMO_DIR#>/flowers.gif

[saints.mama]

style_emoticons/<#EMO_DIR#>/Thanx.gif hi girls! thank you all so much for your support, it seems that everytime im on here im complaining! unfortunately, no one else understands the sheer frustration and hopelessness this condition can bring. my 27yr old daughter is really vicious about it, saying i just want pity and attention and i ruined her life! no word of how i supported her at 14 when she decided to get pregnant and my grandson was born, since then she's stuck in a teenage rebellion ,against only me i might add, and although we kept him for his 1st 5yrs, shes trying to say it never happened and its all in my mind cause im loopy!! AND GUESS WHO'S A DADDY'S GIRL? when my brothers family tried to con my dad last yr when my mum died, she sided with them so as far as i'm concerned they're her family now. she has come back with her new baby girl (who she named after her father) but i cant afford to get attached cause she'll use this child against me like she did the last one and i can't go through that again. i don't know if it was wise or not but i sat my hubby down in front of the computer and let him read all the posts, including mine, it made him think! he did agree that he was scared (never said that before), he didn't know what to do. another friend said that cause he's a very old fashioned bloke who is used to the traditional roles, you know, the strong wife who always fixes things and he just goes out to work, then he's suddenly lost all that and he has to be the "protector" and he doesn't know how ,so HIS frustration boils over and comes out in stupid things cause he can't vocalise what he's feeling. so, no point wasting time, i asked him outright if that was the case and he hung his head and said yes!! he's promised me that he won't allow any of them to bully me again (time will tell) he's learned to work the dishwasher, the hoover, the washing machine and the tumble dryer but my gosh if i have to crawl, i'll fold the washing myself! he'll NEVER master that! he admitted he's exhausted, he's been promoted at work and has added resposibilities there. after talking to you guys, i got some pointers so now i have a plan of action. he has to see a doc, we go to councelling if we can get it, he TALKS to me, doesn't pick fights or attack me cause he doesnt know how to say something, he has to realise that when i go to bed it's cause i HAVE too and that my life is passing me by as well as his. it's a start and i don't feel like a headless chicken, i've got an aim now and i can only say thank you from the bottom of my heart for giving me pointers. if all of the above fail, i know i'll be strong enough to move on with my downs son (my downs girl will be in residential care soon) and like ladyjane said, just enjoy doing what i need to do to be healthy and stop worrying about what someone else says. i think the jealously may stem from his fear of losing me and thats how he interpreted it into running off with another man. i'm NOT making excuses for him, he's going to have to work hard at getting my trust back, i know it's on me too to get things sorted, but if they can't this time, then i can leave knowing that i did everything humanly possible to save this marriage. for thos who asked his age, hes 51 and he was 20 when we met, i'm 46 and was just turned 15 when we met so i know nothing different. again thanks for your wise words guys, i appreciate them all. hugs to all of you, sandi.

[saints.mama]

style_emoticons/<#EMO_DIR#>/biggrin.gif hiya all! just thought i'd drop in and let you know that hubby has been to the doc. he's on anti depressants and has to have a proper physical when the results of todays blood tests come back. he went out for a pint at the weekend (almost never happens!) and he says he feels better already just knowing that he's getting a thorough check up. he didn't know if he needed one or how to go about vocalising his worries. he's definately in a better frame of mind and i'm praying that it's not temporary. thanx again for all your suggestions and we WILL work through them all. i've just had one of my worst weekends ever healthwise, spent most of it in bed. do any of the rest of you find your symptoms worse at period time? and the periods themselves are soooo heavy i can't leave the house for 3 days. i've been to the doc who put me on duphaston which is meant to lighten the flow but it hasn't made a jot of difference. anyone else experienced the same thing? did you find any relief? how? thanx again, hope you're all doing ok? hugs n gratitude, sandi

[pennylp]

Hi there,

I just read all the posts on this... And Boy you sure have been through a lot... Good for both of you to work out your problems... Marriage is very sacred to me... and Of course if it can be be worked out then it is so worth it.. but it all else fails ... You have to do what you have to do....
My husband supports me one hundred percent.... sometimes too much.. But I love him to death for it...
I just wanted to write and say Good luck to both of you, I hope you can get this all fixed...


Love Penny

[saints.mama]

style_emoticons/<#EMO_DIR#>/bigsmile.gif thanx penny, i'm not a believer in divorce either but have reached the stage of self preservation. i'm so fed up of feeling guilty about the way i have to live my life. you all know, none of us would choose this if we had an option but to see some reactions, it's as if i WANT to be like this and it's just pretend anyway! i don't know if it's the stress or what but i can't stay awake just now, i only have the mornings awake then i'm asleep in the afternoon, evening and all night and STILL have trouble getting up in the morning. when im awake, i feel sick and tired and i don't know what to do anymore. i'm having regular checkups with my doc, meds are always adjusted and i just seem to be going downhill. my main docs are at st thomas's in london and i don't see them again until oct. my gp is great but admittedly doesn't know much about lupus and he takes his cues from london but all that takes so much time style_emoticons/<#EMO_DIR#>/tantrum.gif anyway, i've moaned enough, thanks folks for your kind concern and sensible suggestions, i'll let you all know how things turn out. style_emoticons/<#EMO_DIR#>/highfive.gif sandi

[alobreto]

Oh, my! Sandi! style_emoticons/<#EMO_DIR#>/wink.gif
I think you need to get a referral to a pain specialist, a doctor of anesthesiology with additional training in symptom control. There is just no reason for you to continue to suffer so much when there are things to be done that can help.

Pain specialists are not just for people at death's door, although that is one misconception that many other doctor's have.

I wish you well!
Angela style_emoticons/<#EMO_DIR#>/flowers.gif

[saints.mama]

thanx angela. i have one HUGE problem, the docs at aberdeen "teaching" hospital don't accept that i have ANYTHING wrong! even with confirmation from st thomas's. my own gp believes this is a case of "sour grapes" cause london found out what was wrong in a flash yet aberdeen had 3yrs and said there was nothing! i'm sooooooo grateful that i got to see dr graeme hughes just 3 months before he retired and the other docs at tommies are brilliant too, no doubts, they know their jobs. so, the upshot is, i only have my own gp (he's the only one in the practice that believed me all the way through, bless him), if he's unavailable, it's frightening! my next available help is 500 miles away at st thomas's. unfortunately, i seem to be battling ego's as well as these inflictions and it just isn't fair. it doesn't bode well for the next generation of docs who are being taught that if you don't know what it is, then the patient is a hypochondriac! anyway, i could spout for long enough about the injustices of the medical profession, pain management would be excellent but there's no way i'll get it up here when i'm not being believed style_emoticons/<#EMO_DIR#>/tantrum.gif i'm SLOWLY cutting back on the clonazepam, diazepam, tramadol etc to try to clear the way a bit to see what the plaquenil is actually doing without being masked with this other stuff, but at period time???? oh me! it's sooo bad nowadays! thanx to all who asked about hubby, he's taking his tablets and undergoing tests at the moment. he says he doesn't feel any different yet but i notice a tremendous difference in him already, he's talking better, doing things outside, calmer and much less morose. thank you all who advised a check up for him style_emoticons/<#EMO_DIR#>/highfive.gif sandi

[bluebecka]

Wow!!! I just read all the posts and am glad things are going better. My husband went through a tough time about six months ago and my first thought was mid life crisis(but at 44?)he went to the doc and found out his testosterone level was really low. Then he got shots every month, and now he is using a daily testosterone cream and is doing very well. I'm glad because I thought I was going to have to leave him (not literally but some days I wondered).

Do you take any antidepressants to help you. Many of us lupies use them because there is a lot of depression that comes with our illness. I found that they really help me and I am able to cope and not be so uptight anymore.

I hope your house can start to be filled with laughter and humor.(not sarcasm) For me it really helps. My hubby is always saying something that makes me laugh. I also have friends that email me funny stuff.

I had a stressful night last Wednesday and had night sweats all night, so I know that stress really effects our illness. I have just started seeing a pain doctor, and am using lidoderm patches (they just have lidocain in them) and they are working great!! They are like a large bandaid and I cut a piece off large enough to cover my pain spots, (they always seem to move). I got a few samples and then bought them. They are expensive but in my opinion worth it. There is no fatigue or regular side effects like percocet or other things I use. He also gave me some 24hr morphine pills but I used 1 and it made me really tired. I will try again if the pain is really bad.

As for your fatigue have you ever looked into Narcolepsy? I suffered from fatigue for years before ever being diagnosed and finally asked for a sleep study after reading about it online. Sure enough I was right. They call it Narcolepsy/hypersomnia because I don't actually fall asleep standing,driving...like the Narcolepsy diagnosis. I use a med called Provigil and it has changed my life. I still have fatigue but it's not the same.

One main thing with Narcolepsy is if you can lay down (after sleeping at night) and go to sleep within 15min, and if you go into rem (dream sleep) during this time. During my test I slept all night, then had to stay awake for 2hours then layed down and I fell asleep in 2 minutes the first time and went right to rem sleep. In 20min they woke me up and I had to stay awake for 2 more hours. Then they repeat the test. I did it 4 times and all four times I went right to sleep and into rem sleep.

Another sleeping disorder is sleep apnea where you stop breathing at night for short periods. They test for this during the night study. My husband has this and he has a breathing machine that he uses at night. I guess that sleep apnea actually effects your heart because when you sleep it rests or repairs itself, and if you stop breathing it strains your heart.

I'm sure other people know more on this but just something to consider.

Has your husband got his physical yet??
I hope things are getting even better for you and your family.

Rebecca
I have no medical training just knowledge from my personal experiences and studying. I hope that you may find something I said helpful and check with your doctor for his expertise. style_emoticons/<#EMO_DIR#>/wavey.gif

[saints.mama]

style_emoticons/<#EMO_DIR#>/flowers.gif hi rebecca, thanx for your informative post. they're saying the tiredness is due to the meds and the disease. hubby has his medical on tues, he's already seen the doc who put him on anti depressants, took blood tests and he had to do 3 fecal test kits at home. it's a bit of a worry as the doc has phoned him in now that his results are back (his brother died of bowel cancer last year, he got 2weeks from start to finish! he was 54, hubby is 51) between that and my loss of strength down my right side and the wait for my doc to phone me, on tues as well, is such a strain. my nose is absolutely freezing! and my feet look positively dead! the raynauds is relentless, even with the sun shinig outside i'm soooo cold. my poor hubby has taken tmrw off for a big car boot sale so i hope i don't disappoint him, he needs the distraction, but if it's too sunny..... i hope you and your hubby are coming out the other side now? and thank you again for your posting, it's such a comfort to hear from folk who care, keep in touch, regards, sandi

[bluebecka]

Hi Sandi-

I was just thinking out you and wondered how the doc apt went.
Hope you're having a "Good" day. I am aside from being Ice cold.
Rebecca in Oregon style_emoticons/<#EMO_DIR#>/cloud9.gif

[saints.mama]

style_emoticons/<#EMO_DIR#>/oops.gif sorry rebbecca! i think i posted the outcome on another topic, i'm never sure where i should put the answers! style_emoticons/<#EMO_DIR#>/woohoo.gif the appt went fine.... i think, hubby's tests were clear but he has raised enzymes in his liver (he's a non drinker) so he still has to see a specialist and get his, eerrmm, "bowel looked into" so to speak! my doc musta finally got hold of someone in london cause his secretary phoned me on tues to stop taking the bendrofluazide i was prescribed for fluid retention. i've had it on and off for years but when he said that i decided to actually read the ticket inside the box, it said, not to be taken by anyone with lupus or on opiod pain meds!!! well duh to me as i have both! didn't think to check the old meds but i always check the new ones, that'll teach me! just cause ive had something for years, doesn't mean it's good for me now my healths changed! anyway, i stopped 'em 2 days ago and i really think i feel better already (hope i'm not kidding myself!) nuff said. how are you? i know what that cold to the bone feels like and i really feel for you. how are your other symptoms being controlled? what about your hubby? how's he doin' now? thank you so much for asking about us, it's lovely to know that someone cares! i hope you're doin ok? keep in touch, sandi. style_emoticons/<#EMO_DIR#>/foryou.gif

[Sage Hen]

<div class='quotetop'>QUOTE(saints.mama @ Apr 18 2006, 11:53 AM) Quoted post</div><div class='quotemain'>
style_emoticons/<#EMO_DIR#>/biggrin.gif hiya all! just thought i'd drop in and let you know that hubby has been to the doc. he's on anti depressants and has to have a proper physical when the results of todays blood tests come back. he went out for a pint at the weekend (almost never happens!) and he says he feels better already just knowing that he's getting a thorough check up. he didn't know if he needed one or how to go about vocalising his worries. he's definately in a better frame of mind and i'm praying that it's not temporary. thanx again for all your suggestions and we WILL work through them all. i've just had one of my worst weekends ever healthwise, spent most of it in bed. do any of the rest of you find your symptoms worse at period time? and the periods themselves are soooo heavy i can't leave the house for 3 days. i've been to the doc who put me on duphaston which is meant to lighten the flow but it hasn't made a jot of difference. anyone else experienced the same thing? did you find any relief? how? thanx again, hope you're all doing ok? hugs n gratitude, sandi
[/b][/quote]


Hi sandi,

I am Sage. I have the same trouble when I have my period. About a week before my period my moods go wild. During my period, I flow so heavy I use several pads at once. I also stay home for the first 3 days. I am 48 years of age. I went to G.Y.N and he wants me to try hormone replacement. I have done research and am concerned because estrogen is supposed to make Lupus worse. My Rheumy wants me to have hormones or have a hysterectomy also..I am confused about this because of research I have done on this over the net. I do have N.P. Lupus so maybe he is thinking it will help my mind? Anyway..just want you to know that yes..some women do have a worsening of their symptoms before and during thier menses..Hope I have been of some help to you..

style_emoticons/<#EMO_DIR#>/smile.gif Sage

[saints.mama]

style_emoticons/<#EMO_DIR#>/shakehands.gif hi sage, thanx for your reply. clare t has been an invaluable source of info on this. she did some research for me as i was put on hormone treatment for the heaviness of my flow but after the 1st month, my moods blackened considerably. i hated everyone! clare found an article saying that lupies shouldn't be on hrt or hormone therapy so i checked it out myself and she's right! when i think back, i'd likely had underlying lupus since i was 11 but i was on hrt for 4months 3yrs ago and thats when everything just exploded! i literally couldn't get up as i had no energy, the pains were incredible and i really believed i was dying! i had a remission of 3months not long ago, then they put me on the hormones and i've taken ten steps backwards. needless to say after getting the article from clare, i stopped the hormones, this is my 1st month without them, but i do notice my moods lifting slightly. so for me, NO WAY to hormones of any kind, but you must take the advice of your doc as you never know, it may be just what you need and i'm no doc but that was my personal experience with hormones, never again. i hope you find the answer, i know how miserable it is, keep in touch, it'll be interesting to see how you get on, all the best style_emoticons/<#EMO_DIR#>/flowers.gif sandi.