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NRAS
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Anyone else have no support or help at home?

Hi I’m new here. Have had RA for 20 years plus more if you count undiagnosed. Have tried Methatrexate, Sulph, Cimzia, Enbrel, too many steroid injections to remember. Now in Abatercept infusions and started Leflunomide 2 weeks ago. I feel like I have a permanent hangover and my joints are so sore. I have 3 boys and a virtually full time job but have no help from my husband with the boys or the house. I’m at breaking point... he has no sympathy and no thought to help me in any way. Don’t know what to do any more.

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I can relate in a way my ex husband is sayinghas taking me to court cause I moved here...closer to my kids 15 and 16 when today i got my blood work posative for ra...ugh I feel you o couldn't imagine kids a job on top of this you should maybe file disability I had to i.was. a nurse trust me not easy but I had to to focus on me now that all leave me hanging to it's there way of dealing I believe I'm sure it's not intentional it's hard for them to to feel so helpless I'm sure i do have a great lawyer that is free for disability claims he only takes half the back pay and is 95 percent in winning cases i.got approved in just 4 months. It's just my opinion and also try YouTube's motivational speeches that helps me allot !! Trent Shelton is a great one you cam also find on Facebook good luck dear I will pray for you and your family

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Thanks for the reply. It’s difficult, I try and remember that there are people a lot worse off than me but he is like a child. I deal with all the bills etc, everything to do with the boys and work. With RA on top I’m at breaking point and think I deserve some compassion. I have thought about splitting many times but am worried how it will effect the children.

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How old are your children...its a huge factor in my ippinion as far as maturity any age is hard at splitting honestly....Be Happy no matter what honestly here I moved out of state to be close to my 16 and 15 year old boys as well and I'm single so here I sit alone boys are boys growing up not much time for mom.. so that say mom just go and live or do what makes you happy well that is my children that's what makes me happy ...i messed up cause here my children sit saying go mom be happy but I spent so much time on everyone the ex the kids my family like mom sis all them that I didn't keep hold of myself my passions slipped away like sand in my hands I say be happy dear children only want the same things in life we want for them...think about that...everything you and I wish for our kids they lay awake or dream on wishing for us as well ... try to remember when and where you where the most happiest...without anyone pushing or influencing it jus5 cause you loved it there. That's your happy place go to it find it if never and experience happiness switch it up a little and smile you deserve it and that's what they honestly alllll want and don't forget where you see a mess God sees progress what story in the bible wasn't first a sloppy mess then BAM remember progress ....good luck sweetie you got this;)

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Thank you for your support. They are 8,11 and 18. I don’t think the younger ones have the same capacity to put themselves in others shoes and they need stability. It’s difficult because I love him just don’t like him and his total lack of thought. x

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I understand totally people need more education on this disease.....its the lack.of education the fear of the unknown I believe is what men do they isolate anti socialize and run when they don't understand and feel helpless I thing good youtube videoson this and maybe communication away just you two to.get to the resolution you not the issue you know the issues already look together fior resolutions but you can always love someone. Who ever said you have to stop loving him ...yiu don't but if being with him is hindering your life your joy happiness in your journey you need to talk then fund resolutions most of all though....fallow through! whatever is best for your life...your life .. fallow your gut and you just be happy.ok;) try I know it's hard God will help pray hun..pray

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It’s RA awareness week, would your husband be open to watching the short film that has been released by NRAS? You need support and some understanding which you will always get here, however, it’s the housework and general daily tasks you need support with. I hope you find your answer and get the love and support you deserve,

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Thank you. He tends to bury his head in the sand and not deal with what he is faced with. I will try and show him the video - it’s a great idea but you’re right it’s the daily stuff I need help with. I feel like I’m wading through mud right now and he is all take and no give. It does also worry me the bad example he is showing the boys. x

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I found I had to ask my husband directly to help, he knows I am Ill but it's hard to see just how hard it is with invisible fatigue.So try asking not for help generally but, for each item for example carry me the washing up stairs please it is too heavy for me don't struggle, do this repeatedly at times when it would be difficult to say no, if he says no then ask why and if it's not a reasonable reason to say no persist , always say when your in pain or tired and need help stop struggling alone it isn't fair of him if he won't help when asked specifically with reasons.

.Also if you can possibly manage get a cleaner.Even 2 hours a week makes a big difference.You deserve the best life possible with your illness and that means saving your energy for things you like to do not using limited resources on housework incidentally this will probably improve everyone else in the families quality of life too.Good luck I know it's hard.Jane

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Thanks Jane. I have thought about getting a cleaner/ironing person as I am using all my energy up. Just wish he was a bit thoughtful.. he says I’m nagging asking for help so I tend to try and do everything but it’s come to shouting this morning, which I hate in front of the boys. x

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Hello I really reccommend a cleaner I got one when I was trying to stay in work and it helped a lot.I say fix what you can for example when I came home from work and dishes were in the sink it annoyed me especially if I was tired and so I bought a dish washer.I am sorry things are so hard. I hope things improve over time my husband improved and learnt but it did take time especially to accept that my condition wasn't going to get better.I think men like to fix things and get frustrated when they can't.And many were not taught to do their share in the house when they were young, leaving their wives to fight these battles.Jane

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I think men in general have difficulty with empathy. When we have RA we look just the same as we did before and it really is an invisible disease. When first diagnosed, I made light of it and pretty much protected my husband from any bother. Not so now. I really need help and I suffer. I know you do too. The jobs you want him to take over are easy for an able bodied man and terribly painful and difficult for you. Try to patiently explain in exact terms which jobs you need him to do for the family and teach the children to take responsibility as well. One thing at a time. Show your appreciation and relief. Rely on him. Insist that you need rest. I even kept emailing my husband excerpts from the excellent site rawarrior.com so he could read them in his own time. Then I would ask him what he read and try to explain that that is how it is for ra sufferers and how much I need his understanding and support. Choose a time when he is receptive. Just keep at it and put your health first so that you can be there for your family. They can’t read your mind. I wish they could, but You can make progress with getting them to assist and take over wherever possible. It’s good for them. Good luck!

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Thank you that’s really helpful and I will look on that site too. He is like a child anyway and expects everyone to wait on him.. he’s very old fashioned which wouldn’t be so bad if I didn’t work so many hours and try and battle with this stupid disease.

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Well, yes and so is mine. I say we have a 1950s marriage. It’s all very well letting them be pampered, but change is coming and it’s a good thing. The balance can be shifted so you can all be happy. And any training you give your boys in housekeeping is going to be great for their future families. I used to cook dinner then clear up. Now I lie on the sofa and watch television while my husband clears up. He carries in the shopping, opens every door for me, does all of the gardening and has started doing laundry ( I prefer he doesn’t). I always wait for him to lift or carry things and now I have to have a cleaner once a fortnight as can no longer bend to clean and mustn’t vacuum. I don’t work outside the house, but do bookwork sporadically for our business. I don’t know how I would have coped if i’d had ra as young as you, as I am over 60 with grown children. It is hard to stand up for yourself when you are tired, but it will be worth it to decide what changes you want and to make sure you get them in a house of boys. I really wish you well in this. You’re the centre of your family and you can get them organised.

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Thank you for your support. I have told my husband we need to sit down and talk tonight. It’s a bit of a cycle to be honest. I shake him up, he helps a little, then it goes back to normal. We’ve been together 16 years and you would think he might have learnt some compassion by now. I am at breaking point now with the side effects of the Leflunomide on top of the pain. We will see what happens. xx

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That sounds horribly familiar. Does he realise how often you've considered splitting up? If not, perhaps it's time to tell him. You have enough on your plate without carrying passengers and the poor example shown to your children is bad news. Yes, by all means get a cleaner and/or ironing person if you can afford it, teach the children to take a share of the chores and have 'the talk'. I sincerely hope you can find a way through this because separation and divorce are horrible for all concerned as I know from bitter experience. Wishing you all the very best

J

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Hi yes I told him last night and several times before. Things improve for a short while but then return to me doing everything. However, I don’t think you can teach someone to be thoughtful and compassionate. I’m so tired because of the meds it’s making me feel depressed but I have to keep going for the children. I can feel myself reaching breaking point soon. Thanks for your reply and support. It means a lot. x

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Bless you. It's a nasty situation to be in and I feel for you. If you need to talk you can always pm me. Hugs

J

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