Iwas wondering how do other Lupies cope when family members just (dont get it !!??? My mother in law dosent believe how bad it can be and was quite rude about me only working part time etc I know she feels sorry for her son who works really hard and gets fed up with the long hours ,and she thinks i;m just lazy ! I quote " isn't he aloud to be ill then !!" when i said full time would be too much for me and i'm doing the best i can ! and " you could get a sitting down job " She seems to think that cause her son works hard with his complaints then why cant i !!?? ( he has a bad back at times and has lots of pain in his knee )
This happened a few mnths ago but it still winds me up when i think about it! She said so many upsetting things and i cant help not feeling the same toward her and dont think i ever will !!!!
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larissa
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I agree ,,it is still one of the hardest things,,,trying to make people who do not understand Lupus understand what we go through.We all do our best and we are often seen to be looking as if we are lazy and not trying enough!!Have they ever listened and read the Spoon Theory ? p erhaps might help them understand Lupus and how it effects us.A big hug for you.xx
I know exactly how you feel but with my own mother and not my in-laws. If I hear one more time "you just have to get with it" or "you don't look ill" I think there is a strong possibility that I will shoot her!!!!!!!!!!! Thankfully I have a sister who fully understands.
Have you thought of giving her some booklets and information leaflets to read?
First of all well done for working part time! I have come to the conclusion that unless you have lupus few people totally understand. I know again my family don't totally understand...Can your partner not explain to his mother what you go through? Leave some lupus books/leaflets around (or give them to her) to read. My mother recently told me I would be better when I had sweated it out!!! Sitting down job....as we all know bad days you cannot get up or go out. Good Luck x
It is hard. The last week I have suffered do much with fatigue it doesnt matter how much sleep I get I can't am tired. My family have been great but I had to educate them. Get the DVD that explains the lupus illness from lupus uk. Get them to sit down and watch it. Don't put up with ignorance as the stress will make your lupus flare you have to stay calm. X
Really good advice here re: educating people. That is if they are willing to be educated! I tried and have had to accept that in the world of some people - family or not - it is only them and their troubles that exist - your trials are not real only theirs are. That is their choice. May it be forbidden that they are not the centre of attention or may be called upon to help. So, I have let these people go from my life as I do not need the stress and in reality what are they adding? Had to be firm and respect myself and my health. My health was not worth someone's ego! Let go of the negative so something good can move in ..... people who really love you do make allowances even if they don't really totally understand - unconditionally. Go on - give yourself a hug ...xxx
Your reply has hit the nail on the head and made me make some decisions. Let's hopes I stick to them! Everything you have said is soooo true. I've just had a serious bout of Pnuemonia in hospital and yet I get people expecting me to feel sorry for them with minor health issues, I have the patients of a saint usually but after being so unwell (and having yet another Lupus flare) i can do without being around anyone pitying themselves and expecting my attention. I need to concentrate on getting better and being around those I love most. Thank you for opening my eyes! Keep well, xx
Despite my late sister having lupus, when i was diagnosed with it, my siblings were very unsympathetic. Perhaps it was because at the time, i was looking after our disabled mother, and it meant that they would have to do more. My own family are very supportive. Needless to say i have nothing more to do with my siblings and feel much happier for it. Working part time with an illness like lupus is something to be proud of. Don't let your Mother in law push you into doing more than you can. You know best, take care.
Hi Larissa, sorry you are not getting much support from you mother in law. Yes you are doing well for working part time. I have had to take early retirement and of course a sitting down job is not always an alternative. My husband also works very long hours but from home and is self employed. He starts work at 5am and hopefully in by 7pm, no weekends off, works Christmas etc. I showed him your question and he recognizes that it is hard living with someone who has lupus but you don't give up. I hope your husband is supportive even if your mother in law isn't. If it had been the other way around and it was your husband who was ill I am sure you would have taken care of him. I can totally understand why her comments upset you and wind you up so try and have as little contact with her as possible. Spend time with those who accept you as you are and get your husband to do something or see someone about his bad knees. x
Mmmm....... sounds more like a mother-in-law problem than a Lupus one. I could have been Mother Theresa and whatever I did would not have been good enough whereas when we visited her my husband got his slippers put in front of him! Thankfully we had a four hour drive between our homes!!! You do well to hold down a part-time job, keep your chin up and present her with some leaflets, if she remains negative then try to stay away from her as much as possible. Good luck!
I am still meant to be working fulltime, but have had nealry 3 weeks of work and signed off till 8 May, due to the exhaustion & tiredness,plus flare ups, It would be very easy for me to ask the Dr for longer off, but part of me thinks go back to work see how I get on, then think about reducing my hours, or do I get signed off ? My family say they understand but I dont think my husband does fully or maybe that he doesn't want to, he has been off work since begining of Jan with severe depression and has had counciling with another lot stating next week, It always seems to be about him ! they say avoid stress easier said than done, if that were the case it would be leave work and move out, but after 32 years where would i go ? The oly thing we can do is to educate people as much as possible, take care
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Apparently people with lupus dont need painkillers!!
A Bit of Light Relief for people with Raynaud's or with bad circulation.
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