Family

[Davros]

I rarely go sick, I always try my hardest not to let my Lupus take control of my life so would hope that when I do need to just hit the couch there would be understanding.

Unfortunately, this does not seem to be the case. Even after 11 years, strokes, respiratory arrests, transverse myelitis so I now can only walk with a stick in the house my family does not understand. The adults that is - the kids just take it all in their stride.

Last night I had to go sick from work. I am a shift worker and take 999 calls for the ambulance so big responsibility and major league understaffed so I have to be really bad to go off. This said, I am a mum of young children so even though I want to just collapse I have to still try to get the kitchen done, etc. So there I am forcing my way through dishwasher when hubby just pops his head in and asks if I am taking tonight off as well. Seriously unimpressed I point out I have not just decided to take a holiday. His response - well that's why I don't think you should start going to the gym and then wonders why he gets his head bitten off.

After all these years my husband has refused to read any of the literature I have given him, he would rather not even discuss the subject. It is a priority that we educate ourselves about our disease because it is our best weapon. This becomes seriously hampered if our loved ones fail to become educated as well. By doing this we have an additional battle to fight and causes issues that should not be there. Bringing up a family together is hard in this economy without feeling there is no communication level for something like Lupus.

[Jello]

Hi

It sounds like it is his way of coping by just burying his head in the sand?

Does he not want to comes to terms that his wife has a disease?

I know i can't give advise but i will tell you that my husband although does not say much. Has not read any literature, he tries to avoid how i feel and carry on as though nothing is wrong and i have to keep reminding him that i can't go bike riding or down the gym cos i can't move. He is like this with most things he is a bit of an ostrich but this doesn't mean he dont care.

Hope things get better and when your feeling well can look at this in a different light as when i feel bad my mind plays tricks and i feel depressed which not like me at all.

Take care

regards Jill

[Davros in reply to Jello]

Thanks Jill.

You're quite right, he is a v caring man and a great father. I don't think he will ever change. When we were going from test to test he just hid and wouldn't talk. I am not interested in him being sympathetic but would just like him to recognise how strong I actually am and trust me to know when it time to rest and time to fight.

Take care

Amanda

[momo_special]

My husband rarely gives me snippets of how he feels about the Lupus diagnosis and might sometimes worry about what the future holds for me and our family but he might forget that sometimes I have it and when I am in pain, or shuffling along he accidentally might say something like "why are you walking like that?" so I have to remind him. He's told me that he truly doesn't understand what it might be like and doesn't know what to say to me when I'm down about it or when it restricts what we want to do... that's quite upsetting but at least he's trying to be honest. I try to keep the communication lines open all the time, I try not to tell him every little thing that is wrong with me but he doesn't really want to know about the disease and would rather not think about it... that's the difference between men and women, if you don't think about it then you can't worry about it!!! Could you try to have an open discussion without emotion or blame getting in the way? Talk about the future as well as what aspirations you may have, holidays you may want to take when the kids are older? Go out for a meal together and spend some quality time together getting out of the rat-race of life... I hope this helps, even if to show you that we often come across resistance to this disease from our closest family/friends. Take care