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[tazz69]

My wife has lupus .how can I help her more on a day to day basis

[nanleighh]

Just being supportive. Some family members don't understand that we are fatigued and feel ill because we don't look ill. It's like we run a marathon we are not prepared for, a healthy person would start to feel better in a few days, their muscles would stop being so sore, their fatigue would go away, the soreness in their joints would feel better. When you have an autoimmune disease like SLE your own antibodies are fighting against your own cells and keeping your inflammation from going down. Also the Med's they treat us with have many side effects that make us feel sick so sometimes we are grumpy and not feeling well. Don't take it personally, help out and let her rest when she is fatigued. Most of us women are givers and we take care of a lot of others but don't know how to take care of ourselves. Encourage her to rest when she needs to, and don't beat herself up when she doesn't gets things done. She is very lucky to have a partner who cares as much as you do!

[Mamasibby]

First of all, good for you! I don't think my husband has a foggy clue what it is or how it effects me and I'm certain he would never seek out the information you're looking for. Not sure what her primary symptoms are since everyone is different but overall, getting tired and run down makes everything bad so helping out wherever you can with her day to day chores (dishes, laundry etc) is a big one. She probably hurts physically a lot of the time so a back rub, leg rub, shoulder rub once in a while would be good. stress is another thing that can cause a flare. It's often out of our hands when stress occurs but be aware of stressful situations that you find yourselves in. This will be when she needs extra TLC. You're a good man! Let her know you're there for her no matter what she may need and that will go a long way as well.

[Terrier_Lady]

You have had a couple of really great replies here. It's nice to see another husband trying to take care of his wife. I am also so very blessed to have a husband who tries everything he can to make my days easier. A big thing for me has been all the things the others said, plus The exhaustion is huge and she will have a hard time not being able to complete simple tasks she used to be able to do. encourage her that is ok, for me I beat myself up about this. It's such a big change that we feel like we are not only adjusting to life with a chronic illness but also grieving the loss of our old lives. I've also found when I'm really sick I need more encouragement and just overall affection. My feelings get hurt a lot easier when my body is doing worse. I think part of this is we start to feel insecure because we have lost some of our abilities. And I don't know if she does but if she has nervous system involvement she may have brain fog symptoms. When I have that I have trouble finding or saying the correct words I want to use or combine words if I'm trying to talk to fast. I also have short term memory problems at times. The biggest thing is to just be there for her, and help her feel secure with all the changes that will be happening to both her body and your lifestyles. I'm not at all a insecure person but lupus can make you feel less valuable because it limits us so much. You sound like a good husband. Do as much research as you can and hang in there. Wish you both the best.

[Emt1mb]

Hi Tazz69

First of all let me congratulate you for even asking the question, the reason is, most men would rather not know and would rather just carry on in denial that something is wrong with their partner.

Being a male myself I sometimes suffer with the same problem unintentionally, but having watched my mum suffer with sever lupus symptoms over the past 18 years, looking after my brother with a severe disability (cerebral palsy due to mum not knowing her lupus condition at the time of pregnancy), looking after him on her own as dad was either at work or doing the manly thing leaving it all to his wife, mums condition was at breaking point and I have to step up and do the dad and brother role as dad fails at it compromising mums health.

Sorry for waffling on, but my point in there is that, if you don't look after the ones you love who have serious health issues through no fault of their own, the likely hood is that you may lose them. We all need some care at some point in our lives. Nurture her and love her. Be there for her.

Good luck.

[madhead]

By being there for her and try to understand the condition and what i does to the person. Some days there is energy and others fatique and some do get joint pain.

Try put yourself in her position.

I' am sure you are already doing these things

warm wishes

[MargaretGail]

I think that the sort of person who would come on here and ask is also the sort of person who is already doing great. But my biggest problem is that hubby didn't realise how much effort it took to run a house and forgets to ask what needs doing. So my advice would be to ask what is needed because it will be different every day.

[KirstyK]

First off, you sound like a really brilliant husband & she will really appreciate you trying to find out about it.

Your wife probably feels she isn't the wife to you she once was & I know for me personally that's one thing that hurt so bad. You simply showing her affection & that you still love her no matter what even on her super bad days with lupus will mean so much to your wife. Like has been said above if there's a part that hurts, give her a little massage, keeps you both close, you get to spend that quality time together & will help her no end. your wife will probably struggle to sit down & relax when she really needs to if it means there's things still to be done or your left with loads to do now. Yes ok it means things aren't done at the same rate as before but sit down together for a bit so she feels she can take the time to rest & your not running about like a headless chicken because of it.

As well as helping with little tasks, one massive thing to help your wife is telling & showing your wife how much you still love her.

Keep up the good work! Take care Kirsty

[miltonmadden]

Hi Taz69 the only way to help your wife is to be there for her physical and emotional at all times because believe me she will need your support when she has a 'flare up' with her Lupus and she is in severe pain it drains you out physically and emotionally and at times you feel very lonely with this illness because you believe that people especially closest to you do not understand like your family and friends. I have SLE Lupus and I have suffered with this illness since I was a young child however I did not get diagnosed until 1998 and during my childhood I struggled at school and I hated PE but the PE Teacher did not believe I was in severe pain and started to bully me this was the worst time of my life. The only person who believed in me was my father because he went through this illness with me and he had Rheumatoid Arthritis which is similar symptoms to Lupus. My daughter who is now 21 years old also had to go through this illness with me and it was not easy for her but she got through it and had the support of outside agencies so I would do that as well see what other support you and your wife can receive from outside agencies because believe me there is support out there and it would also help you deal with your wife's condition. I would also get in contact with Lupus Uk they have been a massive support for me even gave me financial support twice when I had to move home and had no carpet or no one to help me. The contact telephone number is 01708731251. The person to speak to is Chris Maker who is the Director of Lupus UK. I wish you and your wife all the very best and I hope she receives the support that she deserves because this illness is for life and it is how you deal with the illness and manage it on a daily basis with the right support is the only way that you and your wife will get through this. Take care of yourself and your wife.

[Poshcards]

Good for you, my husband is my rock and my carer. He virtually does everything for me now. Just be there for her and don't get angry or snappy as she may end up in tears, we lupies get very emotional, very quickly. Just remember, enjoy being together no matter what! X

[juneybells]

It's a delight to read such a question !!!! Well done you, all of the replies have probably more information than you even thought were available and everyone of them will help you. But just knowing you understand and are there for her will be better than any medication. Good luck and again well done for even asking

June

[tazz69]

Thank you all. I do try but don't fill it enough

[tazz69]

Don't always understand tho but try to

[Emt1mb in reply to tazz69]

You will never understand it fully as you're lucky to not suffer with it. All you can do is support and ensure your lovely wife is not living in denial, tell her you are in this with her. Help her, cook for her, support her in every sense of the word. The illness itself is so tricky and displays itself in so many ways and other illnesses... lupus is mere umbrella name for many other illnesses that could eventually kill the patient suffering with it.