Why don't they get it?

[Lupdaloop]

I'm going nuts over here, I'm fed up with people making me feel like a hypochondriac , went out tonight for a while, tongue went numb an white, pain ,couldn't talk , my husband is driving me mad with his constant shouting over me , I'm totally fed up!

[Loopylooby]

Aww Hun. I feel your pain...it's so difficult because we look 'normal' but have soo many different and ever changing symptoms. Sorry i can't offer any positive advice but I always find diverting my attention away from the frustration helps. I invest in some me time when I can take the rest if the world like a bath, meditation, listening to music etc...

X

[Purpletop]

Why is he shouting over you??

[witch2]

Meditation is good also mindfulness . I do agree that it is hard sometimes was having the same conversation about conditions like ours. A friend who left her husband for another man then came back got more support and kindness that I got when I had a rough time when I first went on methotrexate. It is tough Hun when my husband was not very supportive and very harsh on me I got an appointment with the specialist nurse and she was fantastic the way she explained everything to him. At least we can all have a rant here it does wonders x

[Lupdaloop in reply to witch2]

I really don't know how I coped before I found this site,purely by accident ! I am interested in mediation I'm not sure what mindfulness is,some say yoga is good , he comes to my appointments,haven't seen a specialist yet and he doesn't like to read, maybe as I progress he will learn more.thankyou x

[Hidden in reply to Lupdaloop]

Hi there. I've been using Mindfulness meditation techniques for about three years now and found it a great help. There are lots of books about it but one I recommend is by Jon Kabat Zinn and is called something like Mindfulness for Depression. Don't be put off by the depression ref the techniques are the same. He also has a book on Mindfulness for pain relief which has a Cd of guided meditations. I think you can download it from Amazon.

[Lupdaloop in reply to Hidden]

Many thanks for suggesting, I shall have a look thanks

[jennywren444]

Hi hun, I really feel for you. It must be hard for a healthy person to live with someone with lupus but there's no excuse for your husband to be shouting over you. I've been in the same position and don't get me wrong, my husband can be really caring and lovely and does lots in the house and helps more than most men with the children but he has his moments when he offers less emotional support than a teaspoon and it's really really hard. When you're feeling I'll and down you just need someone to notice and tell you it'll be ok. I think lots of people with lupus agree that sometimes it'd almost be better if we looked ill! Take care and hope you feel better soon xx

[twist1]

Hi have you thought of doing something drastic when this happens. I think we sometimes forget that we are all smart, strong individuals with all the pain we have to manage we are superheroes.

If you went out and felt ill. Get up and tell him your going home, don't be stoic if we try and pretend all is well people just don't ever get it. If you think he will stop you call a taxi and leave a note with the waiter to deliver when you have left

Again can't really understand why someone is shouting over you but if you can't talk and you don't want to listen have you thought about getting ear plugs lol!!!! You could say lupus is making you deaf, sounds like he wouldn't know either way anyway lol

[Lupdaloop]

I can't thank you guys enough, I've read through replies, I've got a ltremendous amount of respect for you all,I think he is struggling too,not that it makes his actions ok,just I'm finding out things myself here as I'm going along, some things involve my illness,that I don't understand so I can imagine in his shoes I'd wonder how come he's so ill yet I look at him and he seems ok.i try to get my points across, but maybe the earplugs would work a treat! I was try to start my own business until all this,and because I need his support and to trust him , I'm not sure i can do it. I am so tired of being tired and of being me , stuck at home,no job no money of my own,I have to do something! I was going to do a catering trailer,then that's out the window,I thought of flowers,maybe a stall or a little shop,my heads a shed I think it's all too much to be honest. Thanks to you all for being there in my hours of need, you may never know the true value of your thoughtfulness x

[LindaMCK in reply to Lupdaloop]

Men are form Mars and women are form Venus, remember that little book. They simply do not understand us very well, they are men. But if they get a hangnail the world will be coming to an end so you have to consider the source. My husband simply does not listen, he is not the person in pain so it is not bothering him. Your women friends will do a much better job of supporting you. Sorry to hear all you have been going thru. Have you found any relief?

[sunshine16]

wishing you well

[witch2]

Hope this link helps you about mindfulness x

bemindful.co.uk/

[witch2]

If it helps I think my husband did not know what to do. he is an engineer and you fix things and he could not fix this. He found it hard to understand that treatment did not always work or took time. One day I am ok and the next I am not. It can be hard for partners and when we feel rubbish it is hard to say what we want when we can barely talk or put one foot in front of the other. Try and find a mutual time away from the home where you can have a chat it can take several attempts lol and yes I do have to remind him at times xx

[LindaMCK]

I feel your pain literally. Arey ou still having these symptoms?