Families Coping
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| Wed, 08-10-2005 - 12:34am |
I have been diagnosed with RA 3 years in September.
Howevever, my family still has not accepted this.
They want me to be the super mom that I use to be, doing everything for them.
I have gained weight, they do not like that.
I sleep so much more, they hate that.
I have asked them to do counseling with me, they are unsure and so far have declined.
They are not little, Son 19, Daughter 17. My husband is a Family Practice Dr. and understands much more than the kids do, but is very tired of my flares and down times, and the more frustrated my family gets, the more intense my pain and fatigue is.
I was just wondering if any of you out there have experienced these things or anything like them?
Sincerely,
Lilyluvsmom
P.S. I also want to say that my kids are ordinary, wonderful kids, and my diagnosis really has shown me new things in them. They have hurt my feelings so many times. I am at a loss as to what to do.

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Lily, I guess the only advice I could give you would be my own opinion. As you say you have wonderful normal children, but they are not little anymore.
We as a society on this earth have done way too much for our children, they have grown up in an era of computers, download music on tap, takeaway food, parents who drive them everywhere, and in many cases 2 parents working and a cash flow to supply them with pretty much what they want... ( I include my own 2 children in this generation)
You children are NOT children now, they are and should be constructive family members, but if you have been a mother who has done all things for them, then you may find it a bit hard to retrain them. I myself would take your "health problems" out of the picture and use a bit of reverse physcology on them. Your aim to train them to be a future self reliant adults capable of living in a flat or apartment by them self.
This in turn will make them wonderful partners and give them parenting skills.
But if you put a plan into action you cannot go back on it...
Dont do their washing...unless it is in the laundry
Dont make their beds or clean their rooms
Insist they contribute in the kitchen ( my sin 19 & daughter 15 do the kitchen clean up 3 nights each and shared 1 night) We have a timetable up so there are no arguments.
Insits they do major jobs 1 day on the weekend, Vaccum the house, clean the bathroom, .......what ever you deem needs doing. + their rooms.
Teach each of them how to cook 1 night a week( So they can feed them self when they live alone)
For myself I only occasional ask my kids to do something with the statement "I cant do that". I am their mother and they need me to continue to set the boundaries, feed, educate and love them. They are fully aware that what they do around the house is because they happen to LIVE here.
I can understand their reluctance to attend councelling, they havent done anything wrong, they just look at life with a different perspective than you, and for 3 yrs sick or not you are just mum.
My only other suggestion is to hire a housekeeper to come in a few times a week. If you cannot afford this, them maybe cutting your childrens allowance or privileges (if you cant afford both?) May spur them into action.
(PS. Since my son has a typical teenage memory I write out a list of what I expect him to do on any given day...& 3 yrs running now I have negotiated a price with him to wash down all the walls and celings in the house prior to xmas. I negotiate with Gabrille on Saturdays, I give her a list of 4 jobs and she has to pick 2 to do. I also throw the washing in the middle of the floor on a sunday night whislt we are watching TV and say get you start folding)
So Lily my advice really is just demand they contribute to the house because they are old enough, not because you are sick.
If you try these and they dont work I can only think of one other thing...Run away from home (even if it is just for 2 or 3 weeks ) lell
Hi Lily
Molly
Welcome to the board Lily. I am so sorry you are having a hard time. Lell gave you some very good advice. When I was diagnosed, my children were in their twenties. One lived at home, one was on her own. My son still does not get it. My daughter didn't understand the pain either, till she was dx with FM. I have both FM and RA. My dd now tells me she had no idea I was in so much pain till she experienced it first hand. This is the reason for this board. We do know what you are going through and we do understand. Others just do NOT get it!! We all get frustrated by other's comments about "I have arthritis too, or soak raisens in Gin, it helped my grandma", etc. Often it is family that says these things, which I think hurt worse when it is someone in your house.
In the beginning I would have my husband go with me to the Rheumatologist. It was very good for him to hear from the "horse's mouth", so to speak. Maybe if one of your children would go with you, they could ask questions to the rheumy. I was in counseling for myself to deal with this life changing disease. My husband was allowed to come with me whenever he felt the need. It was very helpful.
We are here for you. Vent away, it really does help to let it out. What meds are you on? Are they helping? What meds have you tried?
Hope to hear from you again.
Hugs,
Vicki
You are a dear, and I am going to look into some of the things you suggested.
It is such a comfort to talk to people who really know what I am feeling not only physically, but emotionally.
Thank you so much,
Lily
that people actually feel exactly the way that I do, the comfort it brought was unreal.
Peace,
Lily
Dear Lily,
First, welcome to the board. I am also new here, but I have to tell you these ladies have been WONDERFUL with the support, information, hugs. I am so glad to have them to talk to and I think you will be too!
I also have 2 children, boys 11 and 19. I sympahtize with you! I only been recently diagnosed with RA - though they suspected it the last 3 years. I've been trying to deal with it and also feel like noone really understands. My mom is great - but my husband and the kids - well its so hard. My younger one doesn't really understand and just wants mom to be mom, and my older - he's a great kid - but getting him to help is --well he is no help. He's so wrapped up in his own life he doesn't really think of his family. My husband said one day "well I have arthrtis to I'll probably end up worse than you." These things said do hurt. This was shortly after I was diagnosed. So, I KNOW how you feel. I've always been home with the kids and they just expect to much. SO - talk to these ladies - they have been great.
I really feel like someone cares here - and I can always vent. I like the advise they gave you about the family - it sounds good to me too! My older brother is also a family practice doctor - and of course told my mom he didn' think I could have RA. He didn't have my test results and I hardly ever see him. So, I don't know if I can be a lot of help right now - but I can sympathize and send you lots of hugs.
I just took my second dose of methotrexate and last week I got sick about 3 days from it , so I am not looking forward to tomorrow.
I also get more pain the more my family doesn't understand - because I get upset - I have been trying to read books, light candles and relax in the evening. Try to find a good way to have tome to yourself and relax.
There is also chats - I talked with the ladies last Wed. at 10:00 EST and they are GREAT! They can answer questions and they really made me laugh - I needed that!! So, if you can join the chats!!
I also like to talk and my email is on my profile too!
So I send (though not a lot of good advise) big hugs.
You are not alone!
Julie
It has been a bad week. I have a cold that has been rough for 3 days. No one in the house understands and after 3 years!
My husband and I just had a huge fight because he is sick hearing how awful I feel, he and i need counseling and he is willing but his job is so demanding. He has to get to the point of deciding what is more important in his life.
As I read your post it was as if I was speaking those words, because they have been mine so many times.
I was steered here by someone in another chat room.
And I thank God that I took the step.
Bless you this night!
Lily
Lily,
Bless you too! I do know all to well how you feel! I've had a sinus infection for about five days, and just took MTX and it makes me sick. I also am having problems with my husband -he says I whine all the time- ( which I dont want to go into) and he won't go to counseling. But hang in there - you have people here to talk to. I didn't think i was much help to you - but i'm glad it helped. I want to be here for others too - as the ladies have been here for me the past few weeks. Take care of yourself and that cold and I'll talk to you soon!
sounds like we have a lot in common. bless you - sleep tight!
Julie
Lily,
I just looked at your profile !! Are you realy from Wisconsin????? I am too!! Your the first person I've seen from this part of the U.S. - hooray for the cheeseheads!!! LOL!!!
Are you Packers fans??
Julie
(((((Julie and Lily)))))
Lots of gentle hugs,
Vicki
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