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Old 11-26-2003, 07:50 AM   #1
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cathymaud HB User
Smile Thank-you so much Angelic!

Hi Angelic,

I really appreciate your support and kind message. It makes me feel better to know there are others going through the same thing. It's not the same to talk to friends and family because they just don't understand. Unfortunately, my husband is not very supportive. He is the kind of person who is always on the go and requires little sleep, so he gets angry when I tell him I'm tired or not feeling well. Are you married or do you have a boyfriend? If so, how does he react? If anyone else reading this has any comments or suggestions on how to deal with this, please feel free to reply. I'm really glad that I found this board and you and all of the other nice people who are so helpful! Thanks again!

Cathy

 
Old 11-26-2003, 10:03 AM   #2
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Join Date: Jan 2003
Posts: 665
AngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB User
Re: Thank-you so much Angelic!

Hi Cathy!

It's no problem at all! That's why I am here, and I am so glad that you are doing okay after that awful appt Since I have been so sick, I had to move home to my parents about a year and a half ago now.. Its been hard on me because normally I am so independant, but I am so glad that I can come home (I am 27). My parents are really good about me and my illness, but I don't think my mom really "gets it" sometimes. She is a nurse, but when I try and tell her how I am feeling, its almost like sometimes she tunes me out. I try very hard to be a positive person but I need to vent and cry too sometimes. Mom understands that, and is there for me but when I say that "It feels like I have the flu everyday" she doesn't get it until she has the flu. Then I say "That is how I feel all the time" and I think she gets it. Lupus is a very personal disease hey? People don't understand because our physical appearance doesn't change that much. we do get more pale, circles around the eyes and stuff like that but we look healthier than we are! When I run into people that haven't seen me in a couple of years they dont recognize me because I don't look like ME. But when I used to go to the Rheumatologist (before I was diagnosed) they told me I looked too healthy to have Lupus!

What you can do with hubby is buy a book for him to read about Lupus and what its like. One good one is "Lupus, everything you need to know" by Robert Lahita and Robert H. Phillips. It's worded in easy terms and is really good reading. Another one is "The Lupus Book- A guide for patients and their families" By Daniel Wallace. They are both excellent, and one lady from this board has bought the latter one. Perhaps if your hubby read about Lupus he would better understand it? And you can invite him on the net to look for information and also to chat with other families. It could also be that he is worried about you and doesn't want to talk about it. Sometimes people find it easiest to "ignore" that we are sick, because they are very worried and dont want to alarm us. He probably wants everything to be the way it was before you got sick, and that is why he wants you to go out with him. Its so hard on them.. trust me. I know that my family lives worrying about me, I am sure they worry more than I do!! Anyway.. you take care and the next step is a new Rheumy! hehe

~Luv, Dana (Angelic)

 
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Old 11-27-2003, 11:26 PM   #3
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Join Date: Nov 2003
Posts: 17
Truffles HB User
Re: Thank-you so much Angelic!

Hi!
I'm tired a lot too and don't have a lot of energy. I get overwhelmed at the thought of finding something to wear sometimes. My boyfriend seemed mad at me that I was -lazy- most of the time. Until I explained more about how I too hate being -lazy- and it's hard on me. (I gave more details of course) I finally realized that part of his anger wasn't that I wanted to sleep a lot when he wanted to go out with me. It was the fact that it was hard for him to see someone that he loves tired and without energy all the time. He didn't know how to take it when I was tired. I told him that he doesn't have to solve it, or take it on his shoulders or feel my pain, I just wanted him to listen and respect that this is what it is, period. Once he realized this he felt more at ease. He realized that he had expectations of me that weren't realistic. Once he dropped these expectations and took me for what I am, it's been better. He know asks me if I slept well and asks me how I'm feeling. I'm glad I talked to him. I hope this might give you a new perspective.
Take Care
Truffles

Quote:
Originally Posted by cathymaud
Hi Angelic,

I really appreciate your support and kind message. It makes me feel better to know there are others going through the same thing. It's not the same to talk to friends and family because they just don't understand. Unfortunately, my husband is not very supportive. He is the kind of person who is always on the go and requires little sleep, so he gets angry when I tell him I'm tired or not feeling well. Are you married or do you have a boyfriend? If so, how does he react? If anyone else reading this has any comments or suggestions on how to deal with this, please feel free to reply. I'm really glad that I found this board and you and all of the other nice people who are so helpful! Thanks again!

Cathy

 
Old 11-28-2003, 09:21 AM   #4
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Join Date: Jan 2003
Posts: 665
AngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB User
Re: Thank-you so much Angelic!

Hi guys!

Fatigue is the number one symptom in those of us with autoimmune problems. It feels like we haven't slept in a hundred years all the time! I totally understand Truffles- if I go out and do one thing I pay the price and feel dreadful for about 3 days. This week I have done more (not because I wanted to) so now I am paying for it by feeling so awful! I think 80% of people with Lupus say that the fatigue is the worst part for them. Once you get treated it does improve. I go from not being able to sleep, to sleeping like there is no tomorrow! And when I am on my sleeping schedule I still feel tired when I get up. Mornings are my worst time. My joints are so sore when I wake up that I cant walk far, and when I do I end up having to lay down for awhile so that I can "wake up". I am so jealous of people that can hop out of bed and run to make coffee. I used to be like that! I am on pain killers, so once they kick in I can move around a lot better! Just rest as much as you can, and family and boyfriends understand. If they don't, we don't need them!! Take care

~Luv, Angelic

 
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