Discussion Topic
Need Advice
Posted on 08/04/08, 08:38 pm
I am ready to pull My Hair Out!!!! No one at home seems to understand what Lupus does to Me. I am So tired yet every time I lay down some one makes Me get up!!! I am going though a flare and have a bad ear infection where My ear is bleeding. They say I get enough sleep at night and that I need to be on the go and stay busy. Then I will not be tired and will not feel the pain. Sorry but W T ?
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Reply #1 08/04/08 11:05pm
buy them a book about it. -
Reply #2 08/05/08 12:45am
get them a book and have them read it also you can tell them it is like a bad case of the flu that never goes away tell them that if you don't rest you will end in the hospital have them go to the lupus web site www.lupus.com and read it all the way through. hope that i have given you some help and I hope that you get to feeling better soon.
from purplebubble -
Reply #3 08/05/08 7:47pm
That is so so not right. I do also agree that they need some serious education in Lupus thats for sure. For sure keep reminding them of what it really is & that it's not going to really go away forever & how sick you could become if they don't understand & help you. You can even put them on the computer & make them do some checking and researching of this. Heck have them contact me kitty3 & I'll see what I can do help them understand. I'll keep you in my prayers. -
Reply #4 08/06/08 12:53am
Yes. I get that a lot. No one understands that I can only do half of what I used too. I dont look sick - but my blood test tell me I am pretty darn sick. I think they think I am being selfish or lazy. I just wanna sleep and play on my computer..... ha -
Reply #5 09/04/08 7:00pm
sometimes it is nice to feel needed. But in an active flareup those around you may need to rely on themselves or someone else. Sometimes you have to be your own best friend and just tell everyone NO!! Rest is important. I think I am in a flare because I have been so busy lately and not resting good., Yet when I try to rest, I toss and tumble and am in pain and so I dont rest well either. So what to do? I just kick myself in the a-- and say get up and enjoy life. Life is short, especially for those with an uncurable disease. ENJOY!! eventhe bad days, at least you are breathing and that is something to enjoy..GOD BLESS I pray that your ear is better. -
Reply #6 09/12/08 1:25am
I truly understand. After all, 'we don't LOOK sick.' I remember in some posting that someone referred to Lupus as the 'invisible disease' because it doesn't show. I'm sorry for what you are going through. Rather than have them do research on the computer .... why don't you do some research and pick some of your favorites and print them off for them? You need to rest when you need to. Shoot, I take a nap everyday. Flareups put me in bed for whatever time it takes to feel better. Plus, there are support groups for Lupus members and their families around. Check with your rheumy to see if there is something available in your area. Usually, all Lupies tell their stories there. It has quite an impact. Do you think your family would go to a support group if one is available?
In the meantime, take care of YOU. That's the important thing, despite that you are hearing otherwise.
I'm keeping you on my mind and in my heart.
peace and love .... Kyle Anne -
Reply #7 09/12/08 1:08pm
This is always a tough issue....have them read the "Spoon Theory", you can find it by just typing it in your search......great short story that they can relate too.
You need your rest and you should not feel guilty about it and try to avoid stress.
Let me know if you find the "Spoon Theory" to be helpful...GL
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