Hi,

i understand what you are going through. Am 31 and was diagnosed at 29 but was having symptoms as early as 23 years old. I would be so tired that all I wanted to do is get in the bed and lay down. I have been holding on to my job and fortunately I will be working 2 to 3 days from home soon. It is hard working when you feel so tired. I have to put on different faces throughout the day, pretending as if everything is great when I really feel terrible. I have not told my boss about my sle for fear that I would be looked upon as a liability. I have only been here for 6 months after leaving a work environment that was soooo stressful it sent me to the hospital for weeks at a time twice with in a year and a half. Keeping this secret and hoping that I do not have a bad flare-up is stressful within its self.

I do understand about the family not understanding. I have family members and friends who can't seem to grasp the magnitude this disease takes a person. My fiance has been great. He has been with me through my toughest times and hospitalizations. But I get stressed sometimes because I am the bread winner and pay the bulk of our bills. I travel an hour to and from work and he travels 10 minutes. Sometimes I get frustrated because I am so tired when I get home and then I have to cook. Sometimes I get frustrated because I am tired and do not feel like being intimate and he does. He used to get mad and not understand that it wasn't personal against him..... But after a while it did become personal because of the way he handled the situation. I might have been on the phone talking with a friend for an hour and then he would throw that up in,my face saying "you have time and energy for other people but not for me". He also started on this "you must be cheating". He just doesn't get it sometimes.

On the days when I am really tried, I might say "it sure would be nice to come home and not have to cook sometimes". Hinting to him that I want him to cook sometimes. But he has every excuse in the book like "i would cook but you don't like the way I cook, or I can't cook it like you...... But lately he gets mad with me for saying that and then starts to run down the list of things he does around the house and in the yard that I don't do.... And he's right to a certain extent. He does do a lot more than I do, but he is healthy and I am not. And I need him to understand that sometimes because arguments on who does what only makes me feel worse about the hand that I have been dealt in life with sle.... He has his good days and his bad.

I also have people who depend on me on my church choir as I am the assistant director. Sometimes they don't seem to understand that I can't be everywhere and do everything that may be required of because my body won't allow it..... Some days I could stay in bed all day long.... Sometimes, my phone will ring and I won't answer it because I am even too tired to talk, just to hold a conversation would be too much. It would require me to use brain power.... That's sad but it's true.... And lately the fatigue has been getting worse.

All I do is pray to god that I can help others to see that sle is not a disease that you can pick and choose what you can and can not do. It decides for you sometimes on a daily, hourly, and minutes basis. When you need to rest, rest and do not feel guilty about it. The house can remain a mess... What since is it to have a spic and span house and you are in the hospital because you didn't listen to your body??? None!

Just know that you are not alone!!!

I really understand what you are going through. I was dg w/ sle in 2001 and fibro last year. I constantly worry about people thinking I am lazy. We found out that I had sle a few weeks after closing on our new build home....We recently lost our home because we couldn't keep up financially between my husband having to take unpaid family leave days to help me with our 2 children, my not being able to work and the added medical expenses (we have good insurance but $100-$200 a month in co-pays adds up. I have a pending disability case and have been waiting for a hearing for well over a year. I worry that people think I was lazy and irresponsible allowing us to lose our home while I slept! I have a relative who works with a lady who has fibro and if I hear again what this woman does in a day my head may explode. I homeschool our 2 children because we no longer could afford private school and that is all I have energy for. I had someone tell me that they should send molly maid to my house.....That hurt. I do try to tell myself all the time that the lord knows how I feel and what I am, and am not able to do. When it comes down to it, all we can do is our best and if that is under scrutiny by anyone that is their problem and not ours. Unless you have walked a mile in someone's shoes you cannot know what they deal with. Sle has its own challenges.....Don't add the challenge of worrying about others perceptions. It took me a long time to stop beating myself up for not feeling like doing what I wanted to do. I do know that my husband started reading through message boards online at my request. I was worried that he didn't understand that I wasn't just lazy or crazy even. This did give him more understanding about what I deal with and compassion. You could always suggest this to your family or friends but please don't stress over what they think. Those who wish to criticize will always find something to critique! I pray the best for you.

Have you had a drug or alcohol addiction problem? If you did try aa, you can find meeting in your area easy. Cosulte your yelow pages. It is an ammazinfg program. It works it does>>>>>. Even if you did not an addiction problem get twelve and twelve book. And live according to the twelve suggestins.