My husband is still somewhat in denial. He seems to think that we all have aches and pains and that the drs are just feeding me a line. That this can't be right--that I'm too young (despite my telling him that this is the beginning of the prime age of onset) It isn't like he is mean about it but is basically silent--kind of like he is pretending he isn't hearing it or perhaps tolerating it like a whim. I have endometriosis and PCOS and he was the same way until he saw something tangible like pics of my surgery and my ending up in the hospital with a ruptured cyst that nearly bled me to death. It isn't like I'm looking for pity because I'm not dying but would just like some acknowledgement that this is real and not in my head. I think he just thinks I'm whining and a wimp. So frustrating....
I'm hoping that bloodwork will shed some light for both of us.
I guess I'm pretty lucky that way. My husband is very understanding and helpful. Always looking for ways to make things easier for me. I feel badly for anyone who's spouse doesn't understand, it must make things even more difficult to handle.
Has your husband been with you to one of your app'ts? Maybe if he hears things from the doctor he'll understand this is very real and painful for you.
My partner has been very supportive but then it is really hard for anyone that does not feel the symptoms.
Like most of us, If we can't see it or feel it then it's not happening.
We knew someone that had RA and was in a lot of trouble with it, but I myself found it hard to except.
Brother, has that changed now.
I'm lucky too. My husband is super sensative to my health issues and worries about things more than I do half the time. He's very sweet and encourages me to rest and take it easy even when I'm feeling good. He knows that even when I'm doing well I still have to do things in moderation. That's one thing I can forget really easily at times.
I know I'm lucky but my husband knew about RA and researched it and how it could affect my life....and his before he married me. He went into it knowing he had a wife that at times could be very ill. Things were different with my first husband. He always believed I had RA but he never really "understood" what it was all about. I do think it's harder on men that marry women when they are perfectly health and then WAM life as they knew it changes. YES; our lives change too....but it's our life. Not theirs. It doesn't make it right....We marry in sickness and health and it shouldn't matter but somehow it does I think.
Hopefully your husband will accept things and put forth the effort to learn what he can do to help to make life for both of you more rewarding. It is possible.
I am blessed with a wonderful, understanding husband!Mines the best! I feel very blessed to have him.I'm super lucky too. My husband has not only been supportive, but he has really picked up the slack with housework and the kids when needed.
I think some spouses simply need to be educated. Quite a few websites and books lay things out succinctly. The autoimmune aspect, joint erosions and deformities, etc. ought to wake most doubters up. I mean how can they be ignored? And why would such strong drugs be prescribed for something that is in your head?
Most people think I look to young and healthy, so I understand that line of thinking, but you're right Sunam it is the classic timing of onset. I hope things get better for you. My husband hasn't asked me how I am since I went back to work. (2 jobs! One of my jobs is keeping his books and doing the clerical work for his business which I do at home in the evening when I get home from my 8 to 5 job.)
I'm blessed. LindyI am very blessed that my husband is who he is.
He was 30 when i was diagnosed but i have always been having ra pains, just wasn't checked for it. He has always gone out of his way to help even before being diagnosed.
I worked for him and arthritis in the feet for 5 years kept me from making pizzas (he managed pizza joint) and he would let me sit and answer phones, or going up stairs he would get behind and push me up lol.
Now that i am diagnosed, he goes out of his way to help in every way possible. He "kind of" cleans the house (just enough lol), does the dishes, cooks the meals, takes the kid to band practices and boyfriends, does the shopping etc.
He also does what he can to help. He finds the right braces for my wrists and knees, found the best walker for me with the seat on it, he got me my canes, studies my celiac disease so he could keep me gluten free etc. etc. etc.
I told him i was sorry one day about how he has to do this so early in life. He just told me that when we took our vows, it did say in sickness and in health, so here is the sickness.
All this time, he has never once been upset on anything. I thank god all the time for him.
One thing that really got my husband into this is taking him to all my doctor appointments, you might want to try that. I take him in the room and let him know first hand what is going on and what will happen.
bubbagump2008-04-05 18:31:38Well mine is sometimes supportive,but when he is in pain that goes out the window. He jokes about all the medication I take and says I am a junkie using enbrel. I know he is only joking but it hurts sometimes. When I am in a lot of pain I cant but let everyone know how I am feeling but then he jokes again and says well does your nose hurt or your ears or your belly button , i say no then he says well you dont hurt all over do you. Sometimes his sense of humour can be a distraction to the pain. But other times it just makes me more annoyed.My husband is awesome too! We've been married for 21 years and I came down with ra almost 3 years ago. He works hard as manager of a auto glass repair shop and then comes home and does laundry, dishes, or whatever. He always gives me a kiss and asks me what needs done. I also have a 15 year old son and a 20 year old daughter. Daughter isn't so helpful and is hardly home. Son is great! Hubby and son have been working on a laundry room so I won't have to go to the basement to do laundry. He cooks (trys). Daughter likes to cook but not do dishes. WHO DOES???
I thank God every night for blessing me with my family.
Some men don't fully understand serious illness until it hits them. I went 50+ years with no more than the usual stuff--decades barely even darkening a doctor's office. I know much better now being on death's doorstep. And I truly can empathize with others in way that I couldn't just a year ago.
Needless to say I appreciate other's kindness in all of this. The woman I hope to marry someday soon has already proven that she can handle the 'for worse' part.
mab522008-04-05 22:49:04my wife has had a hard time coping .. we went from having a fairly good life
when i worked.. to living on benefits.. she does not fully understand the ra.
but who can.. and she has had to put up whith me around the house ..
My husband is very verbally suportive, frequently goes to dr apts with me, makes sure I exercise when I probably wouldn't go on my own, helps me carry things, pushes my wheel chair now that I have a broken ankle/foot .......but he draws the line with housework. He would let the house pile up with dirt, while I am one of those "neat freaks". It drives me nuts sometimes that he doesn't care if the house is clean or not -- but then, he doesn't make me feel guilty if I'm not up to cleaning it either. I love every inch of him (even if neatness is not one of his virtues) and have had a wonderful married life because of his love, encouragement, and support in everything -- he makes me more than I would be by myself. We have been married 38 wonderful, adventuresome years. We have 4 adult "children" who, it turns out, are not a burden to society (during the teenage yrs that is always a parent's concern!)and 3 grandbabies.
John is my second husband...we've been together for 8 years. Sadly enough, it was four years into our relationship that I began with issues. I am thankful every day for having him in my life. Things all happen for a reason and my first husband would not have been concerned or helpful.
John works M-F out of town, but comes home on Friday night and jumps right into whatever needs to be done. Helps me set up for next week so that I have less to do when he is away. I also have four adult children and one step son (soon to be adopted son) and they are all helpful. The older two (son, 27 and daughter, 26) are married and have their own lives but come by often and call always to see if there's a need they can help with. Younger son (22) lives with me in an apartment downstairs and is a life saver for anything that is necessary during the week. Younger daughter (21) is with us as well and helps pick up the slack by doing small chores that have repetition and would cause me issues. Youngest (12) is my extra legs to get things from the second floor and saves me from having to go up and down. My older sons take youngest to lacrosse practice since the cold damp field will make me ache for hours.
I am blessed with my family.. They all understand since they have witnessed me in a big flare last summer. They have read what this disease can do and talk about my options with me when they come across an issue on the net.
But, my husband is the best. He went out and bought me a standing mixer after watching me struggle to make mashed potatoes for the family dinner. He found a gardening help that will give me the chance to work in our gardens again... AFter working 80 hour weeks out of town, he comes home and jumps into all the housework and car needs and lawn upkeep. He also realizes that we need some good connection time and we get "dates" LOL and really enjoy our time together. Hopefully, we will be moving to his next job and his time away won't be an issue.
It sounds like overall we've got a pretty good bunch of spouses
My bloke's pretty good. I think he has a good handle on RA. The most important thing he does for me is getting the winter feed for my cows. This takes about 5 trips to a farm 20 km's away with the ute and trailer each Autumn. If asked, he will help with other farm chores that I can't manage on my own. I couldn't farm without his help from time to time. My health has deteriorated over the past two years and he has allowed me come to my own realization that we need to sell this property and buy one with just 5 acres - enough to keep just 2 milk cows. I feel blessed that I've been able to carry on farming this long.
He can't cook and has no intentions of learning, but having been brought up in a very low income family in England, he is very easily pleased when it comes to meals. I keep a few packets of easy meals in the freezer for the days I'm unable to produce a meat and vegie dinner. He cleans up the kitchen after dinner each night and makes the coffee.
He has done the vaccuming for the past two years. He doesn't do as thorough a job as I'd like but I've learnt to accept that and be grateful. My Rheumy is two hours away and if I'm not up to driving for appointments he will take time off work and take me down.
Another thing I love about him is he doesn't mind if I read half the nights when I can't sleep. He's learnt to sleep to the sound of pages turning, me slurping a cup of tea and the bedside lamp on
As long as I cook his meals and make his lunch for work ( I don't enjoy this chore, but who does!) he's happy to help around the house.
He's not the type of bloke to want to know too much about RA and the associated illness's that go with it but he's always there to give me a helping hand so I'm happy with my lot
my H is wonderful.
very concerned and helpful. he takes alot of the pressure off with the kids when he's home, he is relatively knowledgable about my conditions.
He is willing to help but understand that I dont like to ask. and lets me do what I think I can.
My husband is supportive. Before RA hit, I seemed tolerate pain really well. But RA was the first illness I couldn't tolerate. It would bring tears to my eyes with every flare. So, even though I didn't have any swelling when it first started, he could see the effects on my face.
My mom and best friend, however, are a different story. I actually lost my best friend over this - all because I was in too much pain to go to the Covered Bridge Festival. I guess she wasn't a true friend anyway, right?
Had a conversation with DH last night and it really helped. He said that he just doesn't know what to say because it scares the hell out of him. He sees the future as very bleak for me and wants to just really live it up now and enjoy. I told him that I feel very lucky right now because I do feel so healthy but it makes it difficult for me when he is silent--I just can't tell what he's thinking and I need a little validation from him verbally. Not looking for pity but just acknowledgement. He said that he totally understands and is just really worried himself.
Made me feel a lot better to know where he is coming from
Thanks for letting me work it out here, too!
R
Kweenb...definitely not a good friend if she couldn't understand.
Sunam...glad things are looking betterMy hubby has been wonderful, in many ways like a guardian angel. Although I already had fibro when we met, the RA hit just before we got married and that was a difficult blow for me (where for him I think me being sick just meant me being sick, no matter what kind of sick).
It's taken me awhile to accept that he and I don't process the info the same way. I want to know everything medical, whether it's about me or my partner, all the little technical details. He provides sympathy and support, will go to the doctor with me if I ask, etc, but he won't read up on the disease or treatments, or even really remember all the medical stuff I tell him. It's just not his skill or need. But the important thing is that he does try to understand and he is always supportive, with just a few exceptions when he gets his feelings hurt (but we're working on that).
I am very fortunate that he works, shops, cooks, and cleans (and enjoys doing it!), all the while not making me feel bad for being on disability. I still contribute in other ways, but a lot of spouses would have trouble appreciating that.
The other thing we're still working on is verbal validation. I know I ask him way too much if this or that looks more swollen, or complain about the pain, but all I really want to know is that he heard me and I'm not alone. But like you found Rachel, sometimes they just don't know what to say. I tell him, just say "I know and I'm sorry" and that's plenty.
Rachel, I do think it takes some time for the spouses. They have a grieving and accepting process to go through. I am glad you are seeing some progress already.
Partner would like me to ask the Dr if he's able to do anything to restore said lost libido, but I'm reluctant to be offered even more meds.
I'd be interested to hear if others have the same problem.
Midgimoo, I can relate to the lost libido. I asked my dr about it because I believe it started when I began taking lexapro. I wanted to stop it and my dr talked me into staying on it just a bit longer probably because he knows both my children who have been my whole world are leaving the nest at the same time this summer and is worried about how it will affect me.
As for hubby, this is my second marriage. We have been married 7 years and I have been sick for about 5-6 of those. He is an amazing hard worker and I hate worrying him, but I do. He doesn't have much time to help me with housework and cooking, but he does run errands and watches over me. On one hand it makes him crazy when he sees me working around the house "over-doing it" because it takes a day or two to recover, but on the other hand, he keeps asking me to go out or away for the weekends and I just don't feel like it right now. He wants to hike, etc thinking it would be good for me, ugh. I want to be in my jammies around 5 because by then, I am exhausted and just want to crawl into bed.
oh, I forgot to add the financial stress my illnesses have caused has been terrible. I am now working only 10 hrs a week, but at least it is something. I have been a stay at home mom since a little after my boys were born so I don't qualify for any type of disability. I had always planned to restart my career once they were on their own, then this crummy disease appears. My husband and I were both in our early 30's when I was diagnosed with RA and he's been by my side helping as fight the disease. I think the hardest thing for him was when I was diagnosed in 2005 with Immune Thrombocytopenic Purpura (very low platelet counts). That diagnosis hit us like a bombshell. RA didn't seem such a big issue when there was a fear that I could hemorrage without any warning. We've since learned that immune diseases can come in clusters and that ITP is an immune response just like RA. For almost 3 years, it's been treatments every 6 weeks and now we've got some good news. My platelet counts have remained stable for 4 months. They're not very high, but at least I'm in the safe range. We're both holding our breath, counting our blessings and hoping that this will continue. I think that the improvement in my ITP is directly related to my RA getting under control. The other day when I came home from my RD appt with the diagnoses of Fibro and OA, I thought oh no the poor fellow has too much on his plate, but he gave me a great big hug and whispered, "We'll get through this." I am so thankful he's by my side. [QUOTE=wanttobeRAfree] My husband hasn't asked me how I am since I went back to work. (2 jobs! One of my jobs is keeping his books and doing the clerical work for his business which I do at home in the evening when I get home from my 8 to 5 job.)
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Your husband should treat you with the utmost respect even if you didn't have RA. Have you thought about leaving him? Does not sound like you really need him.My hubby does, he was actually complaining to me last night that I do too much and should let him take care of me more. I said I didn't want to have to be taken care of and wanted him to be able to enjoy having a 21 yr old wife. But no he said he liked taking care of me. It is his job![QUOTE=lorster] [QUOTE=wanttobeRAfree] My husband hasn't asked me how I am since I went back to work. (2 jobs! One of my jobs is keeping his books and doing the clerical work for his business which I do at home in the evening when I get home from my 8 to 5 job.)
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Your husband should treat you with the utmost respect even if you didn't have RA. Have you thought about leaving him? Does not sound like you really need him.[/QUOTE]
I have -but I can't seem to find the time or energy LOL! Thanks for the validation.
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