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Hi there and welcome :)

You have already been given fabulous advice so I will just tell you how I feel when my lupus is playing up.

I do withdraw. I need peace and I mean total peace. If I can I stop being present for anyone, no demands, no obligations, just me...it sounds selfish but it isn't conciously at all, it just seems like a very strong need at that time. It is also a concious wish not to burden others with something I find so terribly frustrating and that I know no-one can ever totally understand unless they have experienced it for themselves.

I was able to explain all this to my husband before I felt ill again and he is very understanding. He literally ignores me when I need to be ignored. He occasionally suggests something nice and non taxing, like "Would you like to go out for a meal?" but with no pressure. He removes the children - protecting me as if I were the crown jewels. He knows that I can't handle going out or going on trips with the kids if I'm in a flare and he won't even suggest it. I still need love though and knowing that he is there is very important. He will often just reach out his hand to me. He knows that if I have gone totally silent I'm often in pain. At night he will come close but not squash me at all. Just the lightest of touch saying "I'm here if you need me". He cooks special things, or in my case doesn't cook, as he knows I often only like salads at that time, so he makes special ones that I love.

My husband never ever makes me feel that I am different for needing extra naps. He often sends me off to bed or clears the sitting room of kids and says rest. In the beginning I used to feel so bad about it and it really frustrated me but I have now learnt that he genuinely doesn't mind and if he comes in from work and I'm in bed that's fine, we catch up at another time.

I'm sure I have left a whole load out but still...

bye for now,
Katharine
 
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