Hello everyone
Just venting because I'm so #%$&# frustrated that I'm still in so much pain. I've been on plaquenil for over 3 months, MTX for 2 months and I can't take nsaids because of my stomach. I know we'll get this figured out but I wish it could be NOW. I don't mean to complain about my dh. He really is wonderful, it's just pity party time
My Hubby was the same way and still is in some cases. He use to get upset with me for not cleaning the house, but he just did not understand how much it took out of me to clean the house. It would take a lot out of me because I am recovering germ-a-phobe. When I clean house I do not do it half assed. I clean everything all in one day. I use to shampoo the carpets couch chair even beds ever 2-3 days! I would dust, mop, sweep, wash dishes, scrub the tub, clean the bathroom every other day. It seemed like I was always doing some kind of cleaning, but that was probably due to me thinking I had to clean everything with bleach. I was doing all of that when I was slowly going downhill. Then after having my son, I went downhill real fast and then I could no longer clean house nor take care of myself or my newborn.
My husband now does not put any type of pressure on me to clean the house, he says it will get done when it gets done. Sometimes he gets tired of waiting on me to feel up to cleaning the house that he will do it for me. It is not the way I would do it, but at least he is trying to help out. I do not complain, I just say compliment him on it and reward him later on. I think he would rather me save my energy for his reward than to waste it one cleaning the house
My hubby still has his days where he thinks I am to be better by now, or that I am to be able to do certain things by now, and I have only been on Humira since Feb. Of course I am doing a whole lot better than before, but I still have my days were I feel sick or tired, or it hurts to move certain body parts, you get the picture. But I will try to do a little here and a little there just to show I am at least trying. Besides it is hard to keep a house clean with 2 kids and here I thought it was hard to keep the house clean when we had 1 kid
My hubby still puts my socks on for, even though he knows I can do that by myself now. I think he does it because I take to long to do it. He will even pick out my clothes for me still. He even ties my shoelaces for me, even though I can do that now as well. He is use to the old routine, and I am ok with him still doing all of that stuff for me as I might need him to do those things for me again one day if I get worse. I will most days try to get ready to go somewhere before he gets home so he does not have to do those things for me, do not want to burn him out. But he does not complain and it does not seem to bother him. He gets everyone in the house dressed, me, himself, and both kids. I have a hard time doing things because of my fingers and hands they have deformities and some fingers do not bend because of the deformitites, and just think my fingers use to not bend because of the swelling, went from one extreme to another.
Sorry, this is so long. I was just trying to say that he will come around one day. One day he will realize that you cannot do certain things and will start to take that into consideration. It just seems for they to realize that you do have RA is that you have to be at your worse and then it hits them. I think anytime before being bedridden they just think you are not in as much pain as you say you are.
Hi Joonie,
I feel bad for complaining after reading your letter. I have 5 boys but they're grown and living on their own and I can't imagine feeling the way I do and having to take care of them too. Come to think of it, I wonder if the fatigue I started feeling a few years ago was the beginning of RA. I've also wondered if the depression of being away from them (they live in Oregon,I'm in Florida) has contributed to it.
I've read articles that say to take your husband to your dr.s appointments so he can hear it from the expert but I don't think that will happen anytime soon. He feels badly for me but he thinks the meds will start working and I'll snap out of it. He does whatever housework I can't (doesn't clean like me though
5 kids!!?! I would be cowering under my covers and in bed if I had that many kids!
I am sure the depression is a contributing factor as well. Have you been seen about for your depression? If not you might want to consider getting it seen about and it might make you feel a little better once it is under control.
I hope all goes well with you.
It is really just so hard for others to put themselves in our shoes. The tricky thing about RA is that there are times when you feel really good, and you are so happy to feel good that you over do it...then you feel lousey. My husband would say "well you must not be too sick if you went to the mall"...and I told him, I can walk in and sit on a bench, then look at a few things and go sit and have a soda...and when I am tired or uncomfortable I can go home. If I go to work, I am stuck for 12 hours whether I feel good or not. And just because I dont feel well enought to work doesnt mean I should roll over and die. There is no reason why I cant take the kids to the mall and let them play at the indoor playground and then get a pizza. I dont do the marathon shopping trips like I used to. He asked me to go to Walmart and rent a shampooer and go home and shampoo the carpets. I was still in my initial bad flare, but I did it anyways....I picked that thing up and loaded into the back of my car! I cleaned one room and then told him that was all I was able to do. If he asked me to do that now I would laugh. It is frustrating, and for a while I just kept my mouth shut because I didnt have the energy to argue. But then I got so mad, that I laid it all on the table one day. Now, I am starting to speak up when someone asks me to do something that I dont think I can do physically, or that if I do it I will be in pain later on. I am learning that you can and shoul try to explain how you feel, but when people cant or wont get it...I dont need to feel guilty for just saying NO.
I think it is a woman thing....not saying NO to people. And it is something that you have to consciously teach yourself to do. As children we are taught the virtues of kindness, generousity, and charity....and alot of us get run ragged because of it. It happens to alot of women, but when you have RA your health is being comprimised.
It's bad enough that I'm only 23 with RA, but my b/f is 23 and has VERY VERY severe Crohn's. This limits us both SO much, we've resorted to buying paper plates and plastic spoons and such so that we don't have to do dishes. He has a hard enough time standing and helping around the house, it's not that I don't have the strength, I've learned to pace myself, it just HURTS to do alot, especially little things, or anything involving beinding over. The dishes are the worst, we can't always afford to buy paper plates and such, and standing that long HURTS my back. We don't have a dishwasher and we rent our apartment, so no luck on getting one. Vaccuming gets done rarely, which is awful because we have a precious little kitten that likes to shed. It's enough for us to make it through all the laundry and keep the bathroom clean. It seems like everything else just gets left behind. I wish I knew an easier way for a lot of it. It really sucks because when we get feeling good, BOTH OF US, we end up cleaning. And that's just not the way to spend quaility time together. I've managed to do dinners more often, I have a stool in the kitchen, I just sit inbetween preping and stirring and what not. Our neighbors hate us because we try to keep the big trashcan near the front door, instead of out by the street, its just much easier to put bags right outisde the door, instead of all the way to the curb. Of all the things, I would like an easier way to wash dishes, and an easier way to vaccum, and an easier way to clean the bathroom. Hah..I strayed from the topic a little...he does frustrate me...with him being...iller(????haha) that I am, he gets upset with me for saying I'm going to do the dishes, or vaccum, etc etc, and then bailing on it later. But I just can't help it! No kids yet...and I can't imagine what adjustments we'll have to make when that day comes....BREATHE...I know I can do it. :)
I have the same problems with my husband. Comments like "I thought you were supposed to get better" What are we paying all these doctors for" or the worst was he is sick and tired of my ra and I had nothing to offer anymore
As far as his rewards, this last month it just has not happened. There is either too much tension between us or I am too exhausted. That is sad because it was something we both enjoyed. I just keep telling myself after we move it will get better. I really believe it will. I have to.
It's funny about the fatigue. I've always thought that if I only exercised more I wouldn't be so tired. So of course I was guilty because I wasn't exercising enough
Roxy, as far as the "rewards" Wellbutrin has helped alot. It has increased my libido tremendously. It's not working well for the depression but without it I would REALLY be depressed
I have been seen by counselors and haven't found the right one and I just don't have the energy to go to someone new and start all over again explaining why I'm sad all the time. I was on Lexapro for awhile and it worked but I didn't like the sexual side effects, so it's Wellbutrin and I'm still sad but I don't go down into the dark pit as often as I used to. The thing is I have so much to be grateful for. I have a good husband, my boys are healthy and happy and there is so much beauty in this world.
I
Miles2Go-
I like what crunchy has said about laying it all out on the table. I have done that with my hubby as well, and I think that has also contributed to him kinda understanding how my RA works. He also has seen me at my worse and knows I cannot do certain things and he has also seen me try to do things and get so frustrated that I just start crying and throw stuff. He will usually let me try by myself first for most things, unless he knows for sure I cannot do it. And then there are other times when he will ask if I need help knowing I cannot do it and I will try to be stubborn and try to do it by myself and then be unable to do it and get frustrated and get upset and he will be like I told you I would do it.
OH... washing dishes is the worse on me! It usually takes me a good 20 - 30 mins to to the dishes and the whole time I stand. After about 10 mins into washing the dishes, I cannot bend my knees. They get to stiff and hurt, but most times I try to pull thru and finish them as the pain from trying to unbend my stiff legs is far more great and I do not want to go thru it again. I usually have to stiff leg hobble from the sink to so where to sit and contemplate if I actually want to sit down as unbending my stiff knees is HELL and brings tears to my eyes as it is sharp shooting pains and pops. We have always bought paper plates & plastic spoons up until last year when we had to start cutting back on expenses. Since getting my SSI, I have started buying paper plates again, but not the plastic spoons nor plastic cups.
I have been making everyone rinse their dishes off so they can sit in the sink a little longer until I get the courage to wash them. I was also trying to keep the dishes up by washing them when I take them over to the sink, but for some reason it did not work out so well. Mostly because I was only washing my dishes and not everyone elses. And then I got to where I would make a trip to the sink to see what dishes were in there and wash them while I was standing there. I have yet to master on how to wash dishes. Been on going for over 8 years now.
My daughter is 9 and for about the last 6 months I have been having her do the dishes 2-3 times per week. At first I would just have her unload the dishwasher...then I showed her how to load it. Sometimes I would have to go behind her and show her the correct way...after a while I would just tell her where to move things. Once she figured out that she needed to do it right or I was gonna make her redo it, she became a pro. My husband does them one day a week. So that leaves me only 2-3 days per week. She actually cleans out the sink and wipes the counters which is something that my husband cant seem to remember. Now I have been having my 6 year old help me with the dishes on my days. I am gonna get them all trained. Next....Laundry.Good Morning everyone,
Thanks for all of the great comments on your husbands reactions to your ra. I am very new to this and have struggled with my husbands reaction since first being diagnosed in June. He is trying to understand he has read the pamplets from my rd and researched online. But I still don't think he gets it. In my mind he thinks I am putting on more than I actually hurt or am tired. He never gets sick and when he does he won't admit it he just keeps going. I do tend to be a bit dramatic and I know he thinks it is in my head. Since I was diagnosed early I am moving a bit slower than most I think. Sometimes I feel it is in my head because before June I was normal. I have been a stay at home mom since 2000 so we did not go from 2 to 1 income however because I stayed home I have done it all. From cleaning to maintaining our ranch, taking teenagers here and there and all of the activities that go with school. Now I am just so dang tired and some days depressed. I am on wellbutrin and have been for years and it has always been very effective for me. However ra seems to be testing it's ability to the max. I know in my heart that our marriage is strong enough to withstand ra and all of it's challenges but sometimes I wonder if I am.
nora
Of course, that is the way to go crunchy.
Joonie, if you cannot do the dishes, just don't do them, I don't know if you have childrens or no but they could learn to help around, the same that your husband and if doing the dishes make you feel so bad you should talk to your family and give this duty over to somebody else, I imagine that it is easier for me to say it than do it.
I have my worst crisis ever almost two years ago and by then I was leaving with my boyfriend, he has to do everything around the house, plus of course help me to dress and as you all know with everything, his solution .. he got a cleaner to come once a week., clever guy, I wonder why he did not do it when I was well....
The worst things was going to a restaurant and for example order a pizza but not been able to cut it , he did it for me. It was really frustrating and embarrassing, come on he was my boyfriend!! However he was amazing, we went to a new doctor and I started getting better, four month after this horrible crisis he asked me to marry him...I imagine he knows perfectly what he is getting into.
Still it is really frustrating when I am not good, but at the moment he is very understanding and he is really interesing in knowing about mty disease and it helps that he come to the doctor with me, but still doesn't stop making me feel guilty. We have been marry for 3 months now.
My new worry and guilt is having children. I am taking mtx and I started in february Humira. I cannot afford to have babies now as i am not completly well and even that he said my health is first I know he really would like to start a family. I could do it, but I know I will feel really bad after having it and so i am not going to be able to take care of my baby and I don't like the idea.
The other thing, it is that now that finally I am starting feeling a bit better, I don't think stopping the medicines to get pregnant would be a good idea, my doctor is not going to like it.
Also I am scare of giving RA to my children, they said it is not genetic but my dad have it too, we have exactly the same one.
Sorry this is so long but I needed to get it out of my system.
Well, I would get my kids to wash the dishes, but... I have an 8 year old and an almost 2 year old. The 8 year old I have let her wash dishes before, and she makes a BIG water mess, all over the counter & floor. So....
I cannot get anyone from my family to come over and help me clean as they all have other things on their aggenda and helping their baby sister is not one of them. My mom comes to visit every once in a while and while she is here she will tidy up a bit, but not too much as when we were first married and she would clean the house hubby would get upset because his stuff got moved around, so every since then she does not clean she just tidys up. I have heard both my sister & my oldest brother say they would come help me clean my house, but I have yet to see them and they both have said it for months now. Just like they are going to visit me. Yeah Right! I visit them more than they have visited me in 2 years.
When I was preggo with my son, my oldest niece would spend time with me and help me clean my house all the way up until I gave birth. She is now preggo, so no asking her to help me clean.
My hubby does what he can. Now if I ask he will go clean son's room for me. He is already doing the laundry has been doing that since I was 2 months preggo with son and he just has been doing it every since.
Oh good thing about my dishes is that they are the cheap 98 cent plastic bowls from Wal-Mart that come in 4 in a pack. I can just throw them all out if I really do not feel like washing them
The plastic bowls, that it is a great idea! I think that as soon as I move to a bigger house i am going to get a dishwasher now that both of us are working, it maybe handy for the future, even though now my husband does most of the washing up actually.
Good luck and keep posting good ideas.
a dishwasher is good the only thing is it is so low to the ground that emptying it hurts too. My 13 year old empties it and I refill it but she is back at school now and homework tends to keep her busy.
My girls will help if I ask them I also have a 16yr she works everyday after school and then has homework and she is heavily involved in extracurricular stuff at school and I just hate to ask her for help.
My Husband works 6 days a week 12 hour days he has a new job and is still in his probation period and trying to make a good impression plus he is a supervisor and they tend to wind up staying longer than most. He drives an hour to and from work so I usually will not ask him at all for help because he works so hard for us. but oh well I am more fortunate than most here I do not have crippling pain yet but the fatigue is kicking my rear.
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