Not sure where to start. Have had Lupus for 20 years so quite used to the ups and downs with the horrible illness. Just lately things are really getting me down to the point of wondering why the hell i am here. The only reason i think i am still here is because of my kids... 17 and 14 ( girls ) My partner of two years says he understands but then says i act like a victim when i get tired because i lay on the sofa.. I also work evening shifts in a local pub and do all the housework with the help of my kids. He has not worked in 2 years and lets me do absolutely everything, whilst he sits and plays on his computer. Writing this down and re reading it makes the answer to my problems clear but my emotions are all over the place. I hate being me and feeling like this. Just want to hide away. Not sure there is a point anymore. Feel so sad and down.
Not sure there is really a point to me being here... - LUPUS UK
Not sure there is really a point to me being here anymore
Please be really gentle and kind with yourself, I send you huge waves of love. Your situation sounds really challenging. Is there someone you can talk to about how you feel? You are not a victim, you have lupus and it's hard sometimes and we all deserve to rest on the sofa if we want to (lupus or not). I acknowledge your sadness and down-ness and I send you hugs. You are so worthy of life and have many gifts to give (even if you can't see them right now). I've just started to write a blog about the importance of self-care and self love nurturewithlove.com I don't know if anything there will help you but I just wanted you to know that you are important in this world.
Loving regards
Ani xx
Hi Rebecca, you sound like a hardworking loving mother. Please go to your doctor and tellhim/her what you are going through.
Giving up isn't an option, I found that out along time ago, long before I was diagnosed. It can take alot of soul searching to sort things out and talking to other people(like on hear) does help. Definitly go to your doctor, I had Anti-Depressants and they helped me. Be there for your girls ( I've got girls too).I can't comment on your partner, he does sound a bit of a dick. There's always someone to talk to here.xx
Sounds like your partner needs a kick up the arse!, try printing some information off and leaving it for him to read, Also you are an inportant person for you and for your girls, so go and talk to your doctor, take one day at a time and look after you,
agree with what the others have said hope you find some help soon and sending all best wishes,
i agree with everyone else as well your life is worth living so much for your girls if no one else your partner seems like a total waste of space hun im sorry to say it but to me i feel you would do so much better without him
hope you get through this
thinking of you
take care xxxx
i have to agree with everyone here, your life is worth living,not just for your girls,but for yourself as well.lupus is a condition where you will have ups and downs. please visit your doctor he can help with medication and should sort out some one who you feel comfortable talking to.
my thoughts are with you
angie xxx
Hi RebeccaAnn im exactly the same crying all the time cant sleep blisters etc my mum took me to see my consultant and doctor and they said i've got depression so im on tablets for it but i still feel the same i just want to give up as i feel the lupus is just winning all the time and i feel i cant fight it any more but like you i think of my son who is 19 hes helping me but i've got an appointment with a councillor in the morning dreading it because once i start crying i cant stop so your not alone xx
Jennie73, I hope your appointment went well. Crying is ok. Asking for help is ok too. Sometimes it takes a while for the antidepressants to start working and it isn't a sudden thing, like aha! am cured. It is more like you gradually realize that you can stop your mind from racing from one sad thought to the other and take a moment to work on how to deal with your illness. Also, some pills work for some people but not for others, you may need to try something else. My thoughts are with you and I hope you start to feel better soon. I am so glad you have your son to be there for you.
Hi Rebecca, I don't think anyone who has an autoimmune illness who doesn't at sometime get these feelings. Please please talk to someone, your girls need you and yes I can feel the pressure from even that, sometimes it is the not escaping from it all but you will have better times and enjoy your girls. I hate saying this to you but after making my mind up to get rid of my husband my children were very young and life was very hard on my own I actually mentally felt better. My husband had no sympathy for me I did everything for everyone my friend actually had to ask him to take to the doctors u was so ill. Even when I was threatening to miscarry he would leave me with the children and go for his walks. You need to see how much pressure your relationship is putting on your health. He needs to understand this isn't a cold that is going away. Sending you hugs good luck. I really hope you can shock him into understanding or have a good rethink.
Hi Rebecca
I agree with everyone here, be strong and stay in contact, talk to people and ask for help. All of the above I ignored for far too long, but when I did start to communicate (which initially I found humiliating, I don't like to ask for help or draw attention to myself) and ask for help it made a huge difference. I am also on anti-depressants which I refused for too long and have spoken to a Counsellor and now I am looking at life in a different way, the illness is still there but I am looking at it differently. Try and get hold of "The Chimp Paradox" a book that is really helping me put things into perspective.
Take care & keep in touch. Jax x
I cannot imagine what it is like to work, have teenage children and have lupus all at the same time. My lupus came on after my children left home. On top of that your partener is no help. People with lupus need lots of rest so please please ignore any negative criticism. As someone has suggested a chat with a councillor might help and your GP could arrange it for you.
Rebecca Ann, I know how you are feeling. I have had lupus since I was a teenager (I am now 47). For the longest time, I was so sick and was married to a jerk who didn't believe I was really sick (even tho I was in and out of the hospital constantly and was taking up to 20 meds a day). He was very abusive especially when I was too tired or too sick to do whatever he wanted me to do. All during my 30's, I thought, if I could stay alive till I was 47, then my daughter would be 19, and she wouldn't need me any more, and I could finally die and be at peace. But then, right before I turned 40, I made the best decision of my life - I left my jerk of a husband. It was hard financially, but emotionally, it was wonderful to not have to deal with him or his demands on me. I also told my doctor how I was feeling and she started me on antidepressants. Today I am only 2 weeks away from my 48th birthday. I am happier than I have ever been even tho I cannot work anymore and am almost totally disabled. I look forward to the future and can't wait to see my daughter get married, have children, etc. Please don't feel that your life is hopeless. Your daughters really do need you. You can be happy again. Please talk to your doctor about your situation. I'm not advocating leaving your partner, but if he doesn't work and makes your life miserable, maybe you'd be happier without him. Finally, please know that you are not alone. There are many of us out there who know exactly what you are going thru. Sending good wishes your way, Mary-Jo
Hi Rebecca, so sorry to hear you are feeling so depressed that you would rather not be here. I have had lupus since a child but was only diagnosed in 2006. I have three children who are all grown up now two are still at home and one with autism.
My GP did not always believe me that I was ill but my husband and friends did so that helped me a lot also people from my church. They have helped to clean my house, look after my children and even taken me to the doctors as I was always fainting.
It would be really useful if you could find a local group who would be willing to help and not judge you and your situation.
I live in the West Midlands and if I live near you I would arrange for someone to come and help you.
Let me know where you live.
In the meantime you should go back to your GP and tell him/her everything, the way you are feeling and about your job and home situation.
Love and hugs xox
Oh Rebecca, I am so sorry to hear that you have to go through this and are feeling so down and hopeless. Everyone who has written to you above is right. First you must take care of yourself so that you can be there for your girls. Asking for help is NOT a sign of weakness. Going on anti-depressants is NOT a sign of weakness (how can you be weak you work, take care of children, a house and apparently a lump of a husband, that is the definition of strength). I went on anti-depressants several years ago and have had therapy off and on when I felt particularly down about illness or grief (close friend died and I found his body). The combination of meds to help one's mind focus and a good therapist to help learn coping skills (as well as listening to your story) has helped me keep a positive attitude for 40 years with lupus. Also, some antidepressants also help with fibromyalgia pain.
I really like Maureenpearl's suggestion of becoming part of a community, whether related to a Church or just friends or neighbors who can offer help. I have a group of women friends who are wonderful, and a very supportive family. Yes, many people don't get it, but someitmes they just don't know what to do. If you ask for specific help like taking you to an appointemnt or picking the girls up from school or just doing your laundry one week, you will be surprised what help you may get. Right now you can't imagine it, but in the future you will be able to help other people and that will also be good for you, helping others takes your mind off of your own pain even if only for a few hours.
It is so interesting to me to hear about how some husbands and partners deal with chronic illness. I am single, never married, no kids, and I have a fantasy that a man will come along and help take care of me (highly unlikely at this stage). After reading your post (and others) I don't feel so bad about being single. 
Please go and see your doctor and get some support xxxx
Please take care of you, do not let his ignorance and laziness make you feel like less of a person, you are looking after everyone by the sound of it and nobody is looking after you. I have been there. Please try and assert yourself and let him know that his behaviour is unreasonable. If he doesn't like it that is not your problem. It is his, and how you deal with it is down to you. Do understand that none of this is your fault. ((Hugs))
It seems we all have felt the same at some point .. if people could see how we feel on the inside they might see how poorly we are!!! Just because we look ok and continue to look after the house the kids work the list goes on its assumed that all is well....Do go and talk to your DR .. get a friend or one of your children to go with you to help you explain how you feel..but most of all be proud of who you are what you have achieved bringing up children is not easy nor is maintaining a job and having a chronic illness but you done this!!!!
it sounds like your partner is having a free ride .... at your expense and health...maybe its time for him to move on ...
Take care sending you a big hug xxx
Hi Rebecca, I'm so sorry to hear how down you are feeling. I hope that all the positive comments everyone has left you have helped you to value yourself and get the help you need. I think you are amazing to hold down a job while being a mum and running the home. I think you deserve to get all the rest you need!
I too have felt just the same, and I even have lovely teenage boys and a supportive husband! I have had anti-depressants when i've felt like "I'm a waste of space" kind of thoughts to save me from going over the edge, and they helped. I've also had great counsellers over the years, some private, some through me GP. Don't be ashamed of needing help, I've learned that I need to just keep asking, as living with a chronic illness is really hard! It's relentless and exhausting.
I feel so lucky to have found this site, it's so supportive. I wish I'd found it 2 years ago, I've felt so alone but now here we are supporting each other. Sending you lots of love...
I know how you feel i am going through the same thing gentle hugs x
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