Wondering about those of you with husbands....how are the dealing with it?

Margaret - posted on 06/14/2009

my 'husband' freaked once I ended up on crutches for a month and did everything possible to encourage me to kick him out including cancelling christmas by taking every dollar we had and cleaning out everyones savings account.....

my partner is awesome he understands entirely what my limitations are and we can discuss the issues openly and honestly we share the duties around the house each of us doing what we are best able to manage. we both understand we have good days and bad days....and we both understand that some things wont kill us if they wait for one of us to have a good day....

he also has a chronic pain condition Ironically however overall I am his carer.....we both may have physical limitations. but he also suffers bipolar. and he needs me to keep things organised for him and to get him help when he needs it....and to manage some other things for him such as his money due to the condition.

Rebecca - posted on 06/14/2009

Oh yes, it is like mourning a death. I have lost the ability to do so much and yet nobody seems to understand. I used to paint backdrops for a dance group but now just draw them on then others have to paint for me. Sometimes I just sit and cry.

Lisa - posted on 06/13/2009

sounds like my story.ppl need to realize that when u live in pain u never know what a new day brings.if i get up {notice i didn't say wake up cause thats rare}and am only hurting a 6-7 then i catch up on some things but then i'm in bed for several days after' my doctor tells me to work in 15 min spurts.most days can't do that.i feel guilt about our 16 year old mentally challenge son that we adopted.can't do all i need to with him.rest of kids are grown and married.stress makes eveything worst and our son is being deployed in august.

Lisa - posted on 06/13/2009

my husband is very good about not saying things to me if i can't clean,cook ect.But he really doesn't understand or really want to talk about it.he never says anything when i hurt and can't sleep but he doesn't understand the emotional tole this takes onme. i would love to be able to go to bed with him and have a normal life.a doctor told me one time it's like a death because u have to mourn the life that is no more but i don't think my husband see it that way.

Rebecca - posted on 06/13/2009

It has certainly taken its toll on our finances which of course causes stress. He expects me to do everything I used to do and gets mad if I can't. However, When I remind him of my pain and all that I go through then he seems to understand for at least a little while.

Rachel - posted on 06/12/2009

I and my husband have been togther for 16 years...I was active , outgoing and would do anthing exciting or adventerous. He met me this way...this was woman he feel in love with. When I diganosed five and half years ago with RSD. My life changed slowly at first ..but the last 2 years have been the hardest for us. My disease has come full force. I am not the wife or mother I was 51/2 years ago.Somedays I can't even get out bed. I am tired , irratable and in so much PAIN. There are days were he is all there in my corner having my back and then there are those days were he just wants out..( I dont mean out of the marriage...out away from disease thats has robbed us of our life.) We have to understand that this just doesnt affects us ..but affects our families , friends and people around us. KNOW ONE WILL EVER KNOW WHAT WE GO THROUGH ON A DAILY BASIS....MOST DISEASE ARE NOT SEEN. Be gentle with people ..thats what you want from them. Most all pray for your husband and family. Let them have a break from it all..get away with buddy for a day. You will be in my prayers.

Kelli - posted on 05/18/2009

My husband is my best friend. I have been dealing with headaches, back pain, and a lot of other things. I retired my employment in 2005. I have serizures. He has stuck by me thru everythinh.

Teena - posted on 05/12/2009

To all of you with wonderful husbands be thankful!!

My husband is the king of denial, he can't see it so it must not exsit. I think it is easier for him to deal with it this way but not so helpful for me. We have two young boys, one we almost lost when he was 3 and it was after this that I was diagnose with fibro. He is now a very healthy 8 year old but a huge handful. My husband somedays seems to have some sort of understanding but on the most part I deal with it myself. So to all of you with understanding husbands give them a big hug and say thank you.

Angela - posted on 05/11/2009

My husband sounds like yours, I was diagnosed with breast cancer last year at 36. I chose a bilateral mastectomy, and from there I had 6 surgeries in 10 months, and facing another one soon! This has also kicked me into perimenopause, but I can't take any hormone therapy bcause of the cancer. My husband does not get my pain, frustration, or mood swings and hot flashes. Heaven forbid he research anything on how to help me, he just calls me crabby and wants sex. Hello!!! that's the last thing I want to do after taking care of the 3 kids in pain everyday.

Sandra - posted on 05/01/2009

I is great to read postings from people who are living a life of pain. Some days my husband gets it!!Other days he just doesn't want to hear my complaints. Lately he has knee pain from a Athoscopy from 3 years ago. So is more understanding!! I have had to return to my home on Long Island NY, earlier than planned because my grown daughter has Aplastic Anemia. I The reain, dampness and cold have done wonder for my Arthritis, back, and knees. I have been have severe pain, and have been close to taking strong pain meds again. My internists thought I might have Phelbitis in the left leg and sent to a Vein specialist. All tests were negative and I do not have clogged veins as he thought, because I am over weight. Yesterday he was talking a different tune, it must be from my back!! I really nervous because I can't walk for for more than 5 minutes whn the pain goes into my butt and down my leg. Aside from back spasms , I have not have this much pain since my spinal fusion in 2002. I have appointment to the back specialist. Hope it not my Spinal Stenosis again or my rods and screws are dislarged!!Thanks for letting me vent!!

Gillian - posted on 04/30/2009

It was nice to finally hear from some people that feel the same way. I'm a first time mom with a one year old and i have been diagnosed with fibro, on top of that I also have IC of the bladder (painful bladder syndrome) Polycystic ovarian syndrome, Endometriosis, and IBS. So I deal with pain on a daily basis. My husband doesn't get it one bit nor does he even try. I was always so active and did so much around the house, now i have all i can do just to take care of my daughter and get myself out of bed every day. I have no help so I have to clean and take care of my daughter. I also never complain and whine i just fight through the exhaustion and pain and due what i need to do, but i must say this has put a huge strain on our relationship. I sometimes think that a divorce would be one less stress on me. I get told that i need to do more around the house and that I'm getting lazy. I get so overwhelmed and irritated and I have no one to turn to. So i completely relate to Jacqueline Radford's question. I wish i could help but as you can see I'm in the same boat. We did recently talked but who knows what will come of it cause he still doesn't get that i will never be the same.

Marie - posted on 04/29/2009

I had to stop working and college shortly after being diagnosed with fibro. and fought many years for S.S. Disablity and finally had to hire a lawyer to get it, it's not alot, but it does help us get by, I cannot even try to work, so this helps me mentally feel like I am contributing to our family, my husband and I have always had a very close relationship and very honest, when I was pregnant he was one of those husbands that got every craving and back ache that I got, so when I got sick he and I found out as much as we could about the disease, I've never had a problem with his being unbalanced about it, my problem is/was all of our extended families. You have to try to be patient and understanding about them as well as they have to about you. Try to print things off of the computer web sites about your sickness and give them to him and when he has time to read it, I'm sure he will and then maybe it will sink in, you could also tell him exactly how you feel and that you REALLY need his support. O.K., now-- the physical part-- I walk every day that I can about 2-3 miles, it's usually just to the post office and around the neighborhood, I take my 2 yr. old in her stroller and she likes to get out. It makes me feel really good, last Spring I lost 30 lbs. doing this, but when the weather got so cold and I couldn't get out there, I've now gained it all almost back, but that's okay, I'm out there again and my body thanks me for it. At first, I would be very tired and hurt, but after a little while, it made me feel good. I hope this helps, I wish you the best and please remember that we all understand what you are going through.

Erin - posted on 04/29/2009

My husband didn't really get it at first, and after we finally got the diagnosis and found out the fibro was incurable, he wanted out. He didn't think he could handle knowing that I won't get better.



He's done some research since, and has joined a support group for husbands of women with fibro, and it's helped some. He doesn't want to hear me complain about the pain, it makes him feel helpless. But if I don't complain he assumes that I feel good and gets upset that I'm not cooking, cleaning, playing with the kids, etc...



I'm like so many women on here, just getting out of bed every day trying to do all the same things I used to, push aside the pain to get the job done. Its frustrating to everyone, we don't want to become crippled so we push ourselves, the more we do, the more pain we're in and the less people understand the pain. It's a vicious frustrating circle.

Eva - posted on 04/25/2009

Pain is difficult. I have gone through many surgeries, therapies, procedures and all sort of exams; some weekly, bi-weekly, monthly, bi-monthly.Not to mention blood work, lab work, x-rays and MRI, etc. I have seen doctors and specialists, physical therapist and people that claim to be experts in all kinds of fields.
I have been fired from a job and had to retire from another due to my illnesses. I LOVED WORKING... I ended up in a hospital for six months which meant no house work was done while I was gone. My husband tried but he was working 12 to 15 hour days and trying to go see me. God bless him! I would save food from my meal trays so if he stopped by I could have dinner for him.
I was supposed to be a honeymooner. We had only been married a couple of years. My husband had never been married so he was adjusting to marriage at 40. I had two grown kids because I had been single for 20 years. My daughter and her son lived at home plus my son. Then things changed, she moved out and he was at home for a short while. She returned home with our grandson but my son moved out and moved in with his girlfriend.
Our 10 year anniversary is around the corner and I hate to say he has a bed in the other room. I am praying with this recent (2 weeks now) back surgery that we will be sharing a bedroom again. I hope we can do it. It has been many years. I barely sleep with the pain. This new surgery should help me control the pain. Last night I slept for five hours straight. It was wonderful! I only awoke once. I am not sure how much I stirred but I felt like I could have slept for days!
Financially we have been strapped since I was let go from that first job. From then on, we have not been able to get back on our feet. I was the main 'bread' winner, and now he has to take care of us. This is difficult for him. His family makes it really hard for him as well. They give him jolts of grief over our situation. I still take care of what I can with my disability pay and small pension.
Our house is a mess. I can barely do things and the things I do get done I do have to remind him of. The small accomplishments are great to me. At least I can write letters that we need, search for FREE items or coupons we are in need of. This really helps when he sees the register go from $125 to $60. I told him, I was a single Mom and I always struggled. I can find a bargain a mile away.
Emotionally we had to seek counseling. Family was not helpful, they did not think I was ill. They still don't. Their idea was that I was faking. This just added to the emotional stuff. We try hard on all aspects. He tries hard to help me where he can. I thank him for all he does. I see how hard it is for him.
We still pray together, which is the greatest thing in the world. He is still here but that does not mean it has not been hard. I am thankful he has been here because I would hate to have been alone at a time like this.
The greatest gift for us has been our grandchildren. Both the kids are married and we now have SIX beautiful grandchildren. That helps take away the pain. Our 3 yr old granddaughter will call and ask me 'Do you feel better now Nana?' Just her asking makes me feel better.
God bless each of you. Always smile, that does help a lot. ;)

Toni - posted on 04/20/2009

I have been with my husband for seventeen years. For the first 5 years of our lives together I was very active, running at least five miles a day, very physically fit. Since the MVA I haven't been able to do much activities at all. The pain keeps me in bed some days. My husband doesn't seem to have any clue what I go thru. He complains about the house, excepts supper on the table when he gets home, and clean clothes in his drawers. He doesn't get most of that most days. I just can't do it all like I use to. Our sex life is nonexistant. In fact, I can't sleep in the same bad as him. I am up and down all night from the pain and I keep him awake, plus it hurts me every time he moves in his sleep so we haven't slept together in a couple of years. Financially we do fine because he works 96 hours a week...this doesn't leave much time for him to sleep much less help around the house so my grown children have to help when they can. My six year old has to fen for himself somedays because "mommy hurts to much." That is very hard for me to swallow. I feel so bad when I can't help him with simple tasks some days. My husband has had people come and stay with us to help out on various occasions, but that gets to be expensive and I am somewhat of a private person so I get annoyed by them being here all the time. I too wish he could live my life just one day so that he could realize what I go through. He recently got hurt. He brused his ribs. He acted like he was going to die from the pain. He wanted me to wait on him hand and foot. I refused. I told him that I felt like that everyday of my life and that I had to do thing myself so so could he. Don't get me wrong...I love my husband and he does tend to spoil me at times, but it is in materialistic ways that I really don't need. (like a Mercedees for my birthday last year) I would much rather he acknowledge my pain and my physical needs, and stop working all the time so that he could help me out around the house and with our son. Today we were at my mom's and the two of them gained up on me about the housework. My mom doesn't seem to have a clue either. They both seem to be tired of hearing about it so I don't really talk about it. I get tired of feeling this way, some days I want to forget, but that pain brings me back to reality.

Kelli - posted on 04/20/2009

my husband has been there for me from day one. Yes he get in his moods when i am into much pain to clean the house. but for the most part he understands. I have seizures and syrinx in my back, plus fractures in my spine so he understands everything. My husband is great, and yes he has his days where he get mad and then realizes that it is the pain and i am not just being lazy.

Mary - posted on 04/18/2009

Christine...i know what you are saying about spending one of our bad days in our place...i don't believe anyone i know around me really understands the pain we suffer through on a daily basis...i just want one good day...i can't even remember what that feels like anymore.

Christine - posted on 04/08/2009

my husband doesn't handle it very well.  i guess i talk too much about it and he is tired of hearing about it.  but, i think if i don't talk about it, he would pretend like i don't have it.  it makes me angry when he askes me to go to the store at 8:30 at night because he wants chocolate or we are out of something---it is as if he doesn't remember---or won't acknowledge that i really don't feel good and i am shot by that time of day.

there are days when the wicked part of me wishes he could spend one of my really bad days in my place-----just so he could understand what it really feels like to be uncomfortable in your own skin.

Kimberly - posted on 04/07/2009

Well, I'm not married yet, but do live with him. Andy is one of those rare men who get sympathy pains about everything dealing with female friends. He never makes light of any of it since he's usually feeling it. The first time my knees ever hurt bad around him, I never said a word, but as we got out of the truck to go into a restaurant to eat, he looked over at me and asked me if my knees were hurting, because his were too. I said yeah, but I was used to it and it would be fine. He just looked at me like it was killing him that I had to deal with it and said that if what he felt was even close to how I felt, he didn't know how I delt and that it wasn't fair and he would stop it if he could. I know it sounds really strange, but it's true. I'm lucky to have him, though I am kind of worried about how he will react when my knees spontaneously swell to the size of grapefruits in less than 5 minutes around him. I hate to think because I know it will most likely make him want to cry.

Sheri - posted on 02/25/2009

In addition something I feel that could help us all is a dream I had...In my dream that was oh so vivid...I changed places with my husband...he was the one suffering and I was the one helpless to ease his pain...Upon waking I realized I would not have traded places with him for truly the emotional torment that they endure was unbearable....I see why he runs as fast as he can to do as much as he can....we suffer physical torture...what they go through is a daily gut wrenching heart breaking nightmare.

Sheri - posted on 02/25/2009

I have a rather rare case as it would be easier to list what they say I don't have then what I do... A few things I have are Syringomyeleia (bubble in the spinal cord...Chiari Malformation that I had surgery on and need surgery again for...Sleep apnea... Epilepsy.. the list really does just keep going and gets no better from there.Chronic Pain!!! I have been married going on 24 years. I think how husbands deal with it are really based highly on which kind of hubby you reeled in on your hook years ago.....mine well in some aspects rather good...he is GREAT picking up the slack with the kids...cooking, washing floors, grocery shopping ect when need be, a few added swears during those times can be heard around the house due to his added work load. He will fix me ice water, get me a cloth for my head...has even attempted to clean me up before I stopped him....however I would trade all that for him being emotionally pessent when that is in fact what I really need...I walk this path alone as he rather run and keep busy in anyway he can then face the fact I hurt like hell and there is nothing he can do to fix it. Perhaps here is where I give to much credit as lately it seems he can't even give compassion....which he told me he isn't a compassionate person...(yes I know bad trait but he has some good ones....and after all I was 17 when I met him and he 29...I looked to him as a GOD) I recently came home with news I would have to have another surgery...a big one....he never said anything to me about it....he did find out the next day he has to go for a heart Cathiterization... and that about pushes him over the edge...well..how is my husband dealing with it all...he runs as fast as he can with stress on his back...ripping claws into him the whole way....Sheri in CT

Jamie - posted on 02/21/2009

My husband has been wonderful. He has gotten so much better over the years. When I get my headaches I will scream in pain and sometimes say things I don't mean. He rolls with the punches and helps me in any way he can. Financially we tend to struggle. If I didn't have this problem then we would be a lot better off as I'm sure most people would but it keeps us on our toes and humble I suppose. I couldn't have asked for a better support system. Between him and my children I am truly a lucky girl.

Dawn - posted on 02/18/2009

My husband and grown kids don't really Get It... they try and on some level understand. My biggest problem is that I do so much all the time and try not to let anyone see the pain I am in all the time and not to complain so that when it gets that bad and I just can't deal anymore, they look at me like I am nuts. THe thing that bothers me most is when my older kids say " Oh you never feel good" or " you always hurt everywhere" if I say I don't feel well or am in pain. The one who gets it the most is my 10 yo son. He watched the Lyrica commercial one day and he turned to me and asked me to have my doctor put me on that so I could be like the lady on tv and play and have fun again. Unfortunately with the Lupus and FM and RA I cannot use lyrica because it has neurological side effects that I already have and the docs are afraid it will cause my seizures to come back... But I keep trying to educate my kids and husband and hopefully they will understand one day.

Andrea - posted on 02/16/2009

It took lots of repitition of information and education for my husband to understand what was going on and then several years of communication for him to understand my daily struggle.  The first few years were the hardest because I was jerked around by doctors for a long time before I got properly diagnosed and had help.

But at the same time that he was frustrated and overwhelmed by the financial damage he did amazing things and did so much more than most husbands ever have to as a new father that it helped me get through the times when I felt like he was blaming me and mad at me for not being able to clean the house, do the laundry, manage the bills, have sex.

I had struggled since my teens with lupus and fibro but had never been "disabled" until I had my son at 33.  The epidural gave me neuropathy which went undiagnosed for nearly three years.  That on top of the other problems did me in.  I couldn't go back to work and lost my job after my leave ended.  It all went downhill from there.

The first week home from the hospital with Andrew I woke up the next day unable to walk on my legs from pain.  Then I got stuck on the toilet from being to weak to get up.  My PC at the time kept telling me it was "just what happens after you have a baby."  By day three I couldn't use my arms.

For the next three weeks, until my doc started to acknowledge something was wrong and I needed meds, I couldn't even pick up my baby.  Eric had to bring him to me to nurse him, wash my hair in the shower, go to work every day after his leave and do EVERYTHING to run our home.  In the weeks and months that followed I had two surgeries, both on my butt, which required lying down for months. 

So when my husband was being a jerk because it took me three days to wash one sink full of dishes I remembered him washing my hair and bringing me my clean and clothed baby to nurse. 

I had to do things over the years like write a list of all that I'd done that day and how long it took me.  I used to have to wash two dishes and lay down, wash two more and lay down.  Once he realized how hard I was trying just to function he stopped getting so upset about what wasn't getting done.

I've come so far in the last 6.5 yrs that it's hard to talk about when I would be so happy to cook spaghetti for dinner.  That only happened about once a week if I was lucky back then.  Now I can cook almost nightly with the combination of healthy habits and effective doctors I've found.

I hope that helps.  But as a warning label to this e-mail, hubby and I had a make me cry incident yesterday over housework, so no marriage is perfect ever, and especially when you have so many challenges:)!!!!

Andrea

Amélie - posted on 02/16/2009

My husband is wonderful in all of this, although I must admit that after the accident when money got really tight, and moved to a smaller home, he was at times very frustrated. He does not talk much about all this, but he worries from inside..that I know because of his family and how they know what'S happening (like me not sleeping or that they started me on new medicine ect...) I think it is easier for them to talk about this with someone other then with us ...I guess they don't want to give us more "pressure" or make us more sad..What they need to know is that we need to know they care about this and how it is changing everything around us.

When I am not doing good he's not feeling good, he gets impatient, and powerless. But if I he wouldn't be there I don't know where i'll be.. He helps me so much at home, eith the kids, he does the laundry goes out for errans...ect..

When I told him that I might have Lupus or RA still not sure whcih one,I sent him a link from the arthritis society about both conition what it can do to me and what are the symptoms and how family members can help. So he knows that I need rest, and that the medications I am takiing (metho, Plaquenil) are to help me stop this illness.

We changed our life by making it simple for everybody, smaller house for $$ and housekeeping, from the country with a big yard to the village and s small yard (less work for him, and closer to school and stores for the kids and me).

I actually have to say that all this the accident and now this illness, made us realize what is important in life, and we are now a closer, stronger . and we have the same goal in life , which is to enjoy our little family and the times we have together, while we can still do so.

So I would suggest you print information for him about Ra and put it in his lunch bag, or somewhere he won't be able to miss it, write a little message on it like, I though it would be good for you to know about what I have and how it can affect me, so that we can get through this together.

It really worked for me, don't put any pressure he has to do this on his own, when is ready he will talk to you about it, and if doesn't :you will see little things changing here and there. I also brought my husband with me at the athritis clinic for a regular appointment he didn't even came in the room and he was there just because we had another appointment together afterwards  but by seing all the people there and how this can affect people made him wonder if that could happen to me.....

At least he will have the information he needs to understand, hope it works for you too...

Jennifer - posted on 02/05/2009

My husband has been really amazing dealing with it. I think I struggle more with the anger and annoyance when I'm having a bad day or week and can't seem to get things done. He doesn't seem to understand how it can just exhaust me but instead of being mad that I'm so tired, he just worries. Usually if I explain to him that I'm just having a rough week he's fine.
Financially we are fine, we have insurance that is helpful in that area. Emotionally it's been hard because I get cranky and he gets the not so nice end of it. He handles it well. Intimacy has suffered but he seems to be ok with it. It's just been a big learning experience for both of us.

Julie - posted on 02/04/2009

For me it's been easy. Yes there are days that he just doesn't get it. That it's hard to move, be happy, keep the house clean. But for the most part he gets it. I think it helps that when we were dating/first married his mother was diagnosed with MS and was having seizures and we were helping out, so he saw what a "mysterious" diagnosis looked like. He also has a friend that has pain issues without any concrete diagnosis, so I know he's use to seeing others not be able to do what they use to do or can sometimes do.



Ok I'm rambling... but one last point... the only place I would say is taking a toll is the bed department. We're so busy keeping up with work and kids and me that sometimes we forget to even hug/kiss hello/goodbye!!

Julie