I am so mad and sick of my family. I try to do the right thing but I feel like since I had Systemic Lupus Every move I make is WATCHED

I am sick of it, I just want to not feel for a while! I have had lupus for almost 5 years now and I had steroid phycosis and drug addicition and alcohol due to the steroids! But thats been 2 years ago and I feel like I have to re-live this everyday! WHY!!!!

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  • I've had lupus since I was 19. I'm 34 now. Have been on steroids since then, but have not experienced what you have. The fact that you have Lupus is enough for your family to keep a close eye on you. That you had drug and alcohol addiction as well, makes it worse. 2 years may seem like a long time, but for those who saw you go through it and experienced the helplessness, it is still fresh in their mind. Be patient with them, and gradually when they see you're managing your Lupus better, they'll back off. Until then, they're going to be on you like white on rice. Take each day slowly and as I said be patient with them as they try to understand what you're going through, as well as trying to figure out how best to help you. It gets better with time. Once you understand your body. You'll feel better. Xx

  • Because dear Krisdy, families never forget - and maybe never quite forgive. Some may advise you to talk to them but I know that, at least in my case, words fall on deaf ears. I often feel that my walls have better understanding.You’ll always be suspect of harming yourself.

    Guilt and shame, families do it best! I call my family the Frustrations’ Guild and try, in my mind, to make fun of it. I see them as ancient gods of frustration, a ridiculous version of the Furies, unleashing their wrath on me, not because they are evil but because such is their function, they are not programmed to act in any other way.

    I have a hard time dealing with pain as I'm hyper-sensitive to most pharmaceutical substances – I can only tolerate paracetamol - so, sometimes, I need a drink to numb the pain. It is so ridiculous that I have to act like a teenager who’s trying to conceal a dirty mag. The stress it's causing me... I'm always on guard, trying to act as normal as possible, always agree with their views - which couldn't be more contrary to mine -, never speak about how I feel or express my opinion.

    What I’ve been trying to say is that I know how you feel - same here. Misery loves company, right?

    Can you get away for a while?

    Love xx

  • Thank you, I know they have not forgave. I became very close to a bishop. He told me how to forgive about 10 years ago, really if you dont forgive you make yourself more upset. but today was the worse. My x-husbands wife of 16 years has decieded to attack me. I have always been the bigger person never ever said a bad thing about there dad or her. So why know. My son is 27 and daughter 28. they know me and the things that she says I am doing or not true. and after that my sister sends a crew of hospital men to take me away because she says I am harmful. well they talked to me and felt that my sister was mistaken. since she does not even live by me and has not seen me in about a year!! I thought I was about to loose my mind today. so thank you. I am in the USA

  • I live in the USA. Do you get blisters? I get them so bad all over my lips and the inside of my mouth very painful. Any sugestions?? Love, Krisdy

  • I had no idea steroids could cause such problems until Dryad mentioned the affect they had on her. They did make me a bit manic when i was on a high dose but now i'm on a low dose i'm back to normal. Just goes to show how dangerous these drugs are for some of us.

    Families can be well meaning but sometimes you just want tell them to butt out. We are the ones that are sick and we know whats best for us. We are also more skeptical about medications as we know more about our disease than they do.

    My closest sister is dead and i have absolutely nothing to do with my other sister and brother and extended family. I'm better off without them, they are very bad for my health. I have my husband, his family, our children and grandchildren and i am happy with that.

    Take care.x

  • Melinda, Thank you for sharing that. I have already lost my sister, all my cousins, aunts, and more. I have my husband. My children are grown and live out of state. But if I did not have Mike i dont think I would still be alive!! Its bad enough to have lupus but to have everyone attack you is too much!! You know I hear this alot about Lupus patients. something needs to be done!!! You know if you and I had breast cancer they would not treat us like this!! I said I feel like I have leperse. I know i did not spell that right but it was way back when jesus was around and people had that illness and everyone wanted nothing to do with them

  • Krisdy - from a mother's point of view, your family's behaviour is completely understandable. I understand how hard it must be for you (I have lupus too - and I hate it: sometimes I would love to drown myself in a vat of red wine) - but watching you destroy yourself must have been hell for your family.

    But my eldest son has had severe alcohol addiction - between 2007 and 2009 he put our family through the worst imaginable nightmare, and even though he has been sober for ages (every time I see him, at least!) I still can't quite forget what it was like when he was drinking.

    Be patient with them - hard as it is for them to understand, their behaviour is the result of both love for you, and self-preservation. And stay strong - you have a heaviest burden to carry through life.

  • Why oh why does lupus do this to me? That last paragraph should have read:

    Be patient with them - hard as it is for YOU to understand, their behaviour is the result of both love for you, and self-preservation. And stay strong - you have THE heaviest burden to carry through life.

    My brain says one thing and my fingers do another thing entirely. Sorry.

  • Hi Kirsty,

    It can be a bit of a pain having people watch you, I feel much the same BUT I try to remenber they care about me and love me. ITshard to stay strong but it,s by saying gently

    quietly, and firmly please let me be my own person. And then finding the time to sit down togther and talk about things, Then my sisters can heat my pain.Thats the point that emotionend and logic begin,. It,s by no means easy and I struggle with it and often dont achieve my goal But HAng On In There WE ARE HERE FOR YOU AND WILL DO OUR BEST TO HELP. WE ARE CHEERING YOU ON!!!!!!!!!!!!!!!.

    WE need each other and in our own hold each other in the hard times. Bless you Judith.

  • Krisdy You should never have to be anything else around your family except yourself! If you are in pain and you want to moan about it then do!If you need to have a good moan or cry or whatever it is that makes you feel better (no negative stuff!) then do it!

    If you need somebody to talk to *or you find it hard to express your emotions to your parents or family) who will just be quiet and listen without butting in or judging you then you should try counselling or some other kind of therapy. I have had counselling twice now and it helped me a lot. Maybe you should try it? Living with along term illness is very hard, I have struggled a lot but having someone to talk to is so important and helps you to feel so much better and move on from the past, looking towards the future.

    I can understand your family being concerned with the past but it is hard for some people to move on. I took an overdose just after my diagnosis aged 15 whilst I was on steroids and I used to drink ridiculous amounts which obviously did not mix with the 22 tablets a day I was on! But hey! I am still here and I am starting university in September!

    I have an idea and understanding of how you feel as I live with my grandparents and they do not actually allow me to have control of my own medication which can be pretty frustrating, especially when I am in lots of pain and need instant pain relief. I feel angry and upset that they don't trust me but I know they only do it coz they love me and care about me - that's exactly why your parents are doing what they are doing and behaving in the ways they are. I think it would be extremely beneficial for both you and your family if you sat down and had a talk with them. If you don't want to tell them yourself you could even confide in someone else in the family and have them tell your parents to let them know how you are feeling. Hope this helps! X

  • Does anyone get blisters all the time?? I have them always on my lips and inside my mouth and my tounge they are very painful. If so is there anything that helps? Love, Krisdy

  • Hi Krisdy,

    If you take a look at our article on mouth ulcers you may find something that is helpful for you.

    lupusuk.healthunlocked.com/...

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