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Hello, I'm wondering if anyone else feels the same..... I'm really struggling to cope with life. My wife feels alienated and unloved, and I'm trying for us not to break up. I think this has been rumbling in the background for 5 years now since my last flare. It hit me hard because my renal function was severely damaged and realisation my own mortality was thrust in my face. This time made worse by the fact that I had a son 18 months old. I was and still am terrified that I have sentenced him to the same fate which tears me apart every time he complains of an aching limb or sore throat. I don't know how to deal with this and my wife doesn't really understand. My behaviour has changed dramatically because this is constantly on my mind doubled with fact he is now 6 and my daughter is 2. Can anyone identify with this, or can anyone give me some advise on how to deal with it....

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  • Hi Leewon,

    One thing I have learned from having this disease is to try not to worry about things I have no control over. I know that is easier said then done and it takes work.

    I do not know the odds of your children inheriting this disease but worry and stress will not change anything except to contribute to your own flare-up.

    No one in my family has had it that we know of of yet here I am. I have a friend with type 1 diabetes and her life is also not easy.

    I have a son who is 31 and still has no signs of the disease.

    Remember that nothing is guaranteed and try to make the most of everyday as hard as that is for most of us. I do truly understand your concerns but please do not ruin your lives over something that may or may not happen in the future. We need to live our lives today :-)

  • Dear Leewon,

    I am sorry for taking so long to get back to you. I am also concerned about you and what you are describing is understandable and many will identify with you - men and women.

    First of all: Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

    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.

    Be well!

    Ros

  • Hi Leewon, I too have lupus sle and totally understand what you are going through. I don't have any children, but its hard for other members of the family to understand what i'm going through. I also have depression which was a problem in itself, for us but now with lupus, trying to say how you feel sometimes varies from hour to hour and it seems like you are rattling off your symptoms etc and you get blank faces in return and they think im just putting it on.

    But coming on here its nice to talk to other people who are going through the same thing and can relate to how your feeling, so you've made one change to better your situation. When you need to talk about your illness come on here and you will have friends aplenty to discuss anything lupus or not.

    Good luck leewon and best wishes. xx

  • Hi Leewon,

    I'm just now coming across your post and had to reply. Its very hard when living with Lupus to get your friends, family, and even doctors to understand how you feel. People always associate fatigue as being "sleepy" but Lupus fatigue can have many faces. When it comes to physical fatigue I always tell my family and friends its like trying to run with an elephant on your chest, or as I've heard others say it's like trying to walk underwater.

    When it comes to not feeling 100, I tell my loved ones it feels like the day before the flu hits, that initial feeling when you know your about to be real sick. Its very important to always communicate with your family exactly how you feel. Its not going to be easy for anyone to understand how you feel unless they're experiencing the same thing. There is a song called "Her Diamonds" by Rob Thomas. He wrote the song for his wife who fights Lupus herself. The video and lyrics are pretty telling, maybe have her watch it.

    I'm 22 years old and parents still help pay some of my bills because I am limited job wise on what I can do which caused some tension between me and my twin sister who is healthy. It was difficult getting her to understand that I wasnt just being lazy and that just because I didn't always look sick didn't mean I wasnt . Maybe if you haven't already done these things, take her with you to a Dr. Appt and have your Dr explain or take her to a Lupus support group. I myself have lost most of my "friends" because they just dont understand that i cant go out most days and my version of a party is laying in bed with netflix.

    In regards to your children I must say....My mom was diagnosed with subacute cutaneous lupus at the age of 22 and now me newly diagnosed at age 22 with SLE. My mom feels guilt a lot and I think its silly. Your children will never resent you if they end up developing an autoimmune disorder. They will understand that YOU didn't ask to have this disease either. Sometimes we just get dealt a crappy card and I can honestly tell you in a way it has made my relationship with my mom stronger because she understands what I'm going through and we are a great support team for each other.

    Were only given these battles because someone believed we were strong enough to fight them! I know how lonely this disease can be. You should share your story on the blog I just created. You can share (your first symptom, your diagnosis, things that have helped you cope, ect). Sharing your story can open so many doors for you from fellow lupies as well as helping others by sharing your struggles. You can inspire others and gain knowledge by emailing your journey to:

    laslobasanonymous@gmail.com to be shared on the new support page/blog

    laslobasanonymous.wordpress...

    Hope that helps and hope you start feeling better and STAY STRONG!!

    :)

  • Thank you all for those lovely messages. It's been an incredibly tough year. I have only just been able to come back in here and didn't realise that you had replied. Thank you very much for taking the time to message me, I am truly touched. I've had counselling and lots of help from friends and family. I was good after that for a good six months and then had had a divorce and spent most of last summer in a battle to stop my children being taken nearly 100 miles away by my now X-wife. Which I failed because apparently because im the wrong gender! It's been a nightmare truly. I try to just get on with life as normal and I try to make my time with my children as fun and exciting as possible. But the times without them are truly Unbareable. I've become a very poor communicator with people and people close to me. I suppose that's just what the disease does to you. You get used to just carry on with life, alone, as if there's nothing wrong because no one really understands what it's like to live with lupus. It's always there in the background. I try and forget about it and push on. But the daily gripe of popping cytotoxic poison reminds me I'm not the same, lol. If I'm being truthful I do it for everyone else because they seem to associate how you look with how you feel. I fight through the fatigue and the feeling of utter shit because It won't beat me but all everyone else sees is that how fit and well I must be because I can do those things. Little do they know that most of the time my body is screaming at me to stop, lol. Anyway sorry for depressing everyone again. Life goes on and intend to live it to the max. Hope you are all well, cheers again, Leon

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