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Hi,

I've just joined this group after being diagnosed with SLE for 5 years. I have never even spoken to anyone with this but have always felt like something was missing. I have a fantastic family and friends who have always been supportive and have been there since the very beginning when life was pretty grim.

Things are going well with the lupus but are very slow, still on Pred and cellcept plus others!

I am always busy and tired and when I rest I have this huge feeling of guilt that I should be doing something. I feel the same when I am so tired or I ache so much that I find everyday things difficult. i think it comes from me always being so adamant that this Lupus wont get the better of me.
Does anyone ever feel like that too? - I have such a need for someone to tell me this is normal because as much as they try, nobody I know understands.

Nadia
 

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Hello Nadia and :welcome:

I think that many here will identify with what you're saying. Most of us have vowed that "no" lupus will not get the better of us!!

So many of us were extremely active, maybe perfectionists, leading busy lives and suddenly life gets turned around and we have to learn to pace ourselves and live with a completely different rhythm. I think that guilt is part of our upbringing and feeling guilty about not doing enough is quite natural.

I hope you enjoy being here :) bye for now,

Katharine
 

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:wavesmile:hi nadia

welcome to the sandbox. i'm glad you found us. it is a great place to meet others who have real experiences like you do.

how lucky you are to have very supportive friends and family, that has to be help as many of us feel all alone.

what you discribed sounds normal to me, what ever normal is :eek: personally i don't think i've ever been normal :wink2:.

being that you have had this for awhile sounds like you have a good handle on it. how does it affect you??

don't worry or feel guilty about needing to rest or put something off as you know you have to listen to your body or else you will pay for it later. i know its hard. i use to ignore my body and do more than i should and try to be normal and i was do more damage to myself and i wasn't a very pleasant person to be around as i was extreamly tired and in pain :oops:.

i currently have a good treatment plan and i'm doing somewhat better now.

hope to hear more from you. we have a chat room where alot of us like to go to talk one on one with each other and get answers faster to your questions. feel free to post question here or cry and whine, rant and rave. or laugh. we all understand.

again just want to say hi :shake: and welcome you:welcome:

take care
hugs and kisses
 

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I think it's pretty normal, I too used to feel guilty for resting and especially for not being a "super-mom" to my daughter. But over time I've learned that rest is very important for me, as it makes me feel better and in turn helps me actually be a better mom and happier person to everyone in my life.

Welcome to the site. ;) I hope this helps you to feel better and gives you another perspective when you start to feel a bit guilty over things.
 

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Hi Nadia,

First of all I love your name. I always said that if I had a baby girl I would name her Nadia. I did Gymnastics for 17 years and my favorite pro Gymnast was named Nadia. Ever since then I have just adored the name. By the way, I never had a daughter but instead a son!:hehe::hehe::hehe:

Welcome to the site. I am sure you will come to love it here. The information you will find here is invaluable and the support and friendships you will get are unbelievable.

I hope to get to know you better. Join us in the chat room sometime.:wink2:
 

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Hi Nadia,:wavey:

Welcome to the forum, it is nice to meet you.

Oh yes I feel that same way. Though I have learned to listen to my body more. If I don't rest I pay for it in the end.

It is great that you have a supportive family and friends. It is also nice here at the board to talk to people who really know what you are going threw. This forum has great information and very caring members, who are willing to share their experiences and support.

Love,
Lyn
 

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Nadia,
Hi and welcome to the site. It not only is normal, it is life. Guilt seems to be at least a female trate. As you can tell I am tired also, but don't like to miss posting. We feel guilty for resting when we should be up doing this or that, and we feel guilty because we push to hard. We have to step back and look at if we don't rest it is worse and we miss out on more and more for that pust that we did all in the word of guilt. It is sad that some of us can't even be sick because of guilt ( or at least admit we are sick). You are not alone and we have all been there. You will feel so much better if you are able to talk about what is going on. I don't know for you but for me people just got tired of hearing how tired I was and how much I hurt today. One by one they dropped out of the visit the friend or family member. Then I just quit replying to how are you today or I would smile and say fine. When that was not the case at all. I hope you are doing well and feeling well.
 

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just wanted to say :welcome:and yes i feel the same, its hard work isnt it, just feel like at times you hit a brick wall. glad you found us ,pop into chat to, you wont be alone here


Take care Lin xxx
 

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Hi

Welcome to the forum!

I was only diagnosed a few months ago but but in that time I've found this a great place to come for advice and support.

Best wishes,
Meriel
 

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Hi Nadia

Welcome to the site, you have certainly come to the right place:).

I think we all feel like that sometimes but, although it can be hard, you have to listen to your body. resting and taking sometime out is the best way not to let lupus beat you.

once again welcome to the site, the people here are amazing:) I feel so lucky that I have them to talk, whinge and even rant too.

hugs
Elle x
 
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