Positive/ Negative

Having battled daily pain, taking numerous tablets and having extreme tiredness I'm wondering if the tablets work at all. I'm unable to work because of the pain and no spoons. My social life is non existent. I have managed to stay upbeat as that's me telling myself I'm still me. Recently I'm becoming more and more down. Who am I kidding. I'm not me. I'm a new version of the old me. I think I am finally grieving for the me that's gone. The me that Never stopped. Was on the go. Helped everyone. Was out all weekend. Had a busy, professional job. Had a brain. The me that was life and soul not sleeping all day and groaning when I move!. I have sle lupus. Does anyone else feel this way. I feel like I'm going nuts and I know if I stress I will be physically worse.

8 Replies

  • Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked!

    You are not going nuts! You are "normal"! You are not the only person who feels in this way. In fact, your description is similar to practically everyone I have met.

    We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

    By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

    When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

    Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

    I look forward to talking with you more!

    Sometimes we need to talk to people who understand and who are not family or friends.

    With good wishes!


    Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

  • Do you have aps and Lupus? I feel the exact same thing, I think I'm still grieving the old me as well, the pain has gotten better but I struggle with doctors here and I'm more afraid of losing my life than anything. I've done everything to try and get better holistically, gone gluten free, dairy, soy and corn free. I'm back to eating everything but gluten. I just want my old life back!!!! I'm sorry you're feeling so bad but I can certainly relate, i have crohns disease and aps but they say I don't have lupus but I have so many symptoms of it and I'm allergic to almost everything, sometimes I feel like I should live in a bubble, i can tell you this I do have some good days and I do keep active with my family, the only ones who truly love me. Keep your head up, as life is to precious to give up.


  • Dear Amy,

    I agree with you. You are grieving for the "old me".

    If you want to talk, please join thehttp://www.lupus-support.org/LuPUSMB/

    LUpus Patients Understanding & Support (LUPUS) specialise in psychological support which should be an important part of the treatment process.

    I can be contacted there as well.

    No one should have to deal with all that you do alone and without support. It does not matter if you have a diagnosis or not.

    With good wishes,


  • You have just described my life, grieving for my lost life is perfect.

    When I think back to what I used to be able to do, it seems that I used to be superwoman! 

    I to try to be happy with the new me, and smile for my family and friends,  because if I don't, I feel self indulgent. It's so hard though isn't it.

    When I read about others who have lupus and still manage to work then I think maybe, if I ever get the tablets right that could be me again,  but doesn't seem very likely.

    When I meet up with my friends who are still doing the job that I loved, they say they can't wait to retire and I just smile. I am very grateful that they still include me in social events, so when they ask how I am,  I tell them what they want to hear. 

    It's difficult to be honest even to myself most of the time, this is the only place that I would express these feelings.

    Thankyou, you have really made me think this morning, if I had a couple of spoons. I would send you one 😀

  • I'm so sorry that's how you feel although I understand totally as that is exactly the same as me except the work part as I am trying my hardest to stay in my job as I feel it is the only thing I have left of the old me. Good luck and remember that you are not alone xoxo 

  • Leanne.

    Good luck with your work it's great to hang on to that part of the old you, if it's possible. 

    It's good to hear that it can work for some people.

    Take care ☺

  • Thanks creaky x wishing you all the love and support in the world xoxo 

  • I have been wondering how everything is for you at the moment?

    With good wishes,


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