Oh purple-lou, how awful! I don't know what to say, except hugs & more hugs. This is so common though, I know someone whose long term partner walked out when she got breast cancer. He said he needed space & wanted to go & find himself! How insensitive & thoughtless can you get, but at least they didn't have children.
I hope some one out there who has been through this can give you positive advice that helps you get through the initial shock, & hopefully reduce the risk of a flare.
Firstly, big hugs to you!! I got a wave of goosebumps reading your post This is a huge fear of mine, that one day my partner will get fed up and leave.
I know it must be really hard to be with someone and them be ill and it does put a lot of pressure on a relationship, but I, like you, would stay with my partner if he was not well. I love him and would want to be with him regardless. I feel it is quite heartless of him to leave and just give up like that, you do not have the option to just give up!! I'm sure your girls will understand, how old are they? Are they able to take some of the load? (I don't mean become carers, just maybe if they are old enough they could help out round the house? We always had chores as children).
I can't imagine what you are going through, it is hard enough holding it together at the best of times without having the breakup of a relationship to deal with too! I hope you find the strength to get through this and that it does not bring on a flare in you. Please feel free to message me if you need someone to talk to. huge hugs xxxx
Men love nothing more then seeing a woman weak! so you be strong (mentally) and cope without him. you have 2 lovely girls and that is all you could ever need and want in life! I would think to myself 'oh im glad what a tool he was, rather then later on in life' you dont want to be with someone who cant even cope with something that effects YOU! he sounds selfish. I would however suggest asking for help within the community, eg support workers or someone! to help with your Lupus. I have Lupus and it is not nice! when im stressed i get soo tired and worn out, and it is a big factor in lupus relapses! maybe ask for a part time nanny/carer to help you and the girls out, and also may give you a chance to go out and get your hair done or something and maybe in time, find a better guy! that guy you been with, cant just leave, he has two girls to think about! what is he going to do for them? please please dont let him win! get the help you need and deserve!! BIG HUGS!! and chin up! Find the confidence and ask for help! xxxx
My heart goes out to you. I hope you have family and friends that can come to your side you need all the support you can get now. Try and look after yourself now it is a very distressing time for you and your two girls could he not have waited until the new year just to make it easier on the girls. The one thing I have learned over the years is we all ways cope so cope you will I just hope and pray you get some support.
I already left a comment but it doesn't seem to appear, so I'll re-write.
You must be in shock. You're probably thinking why you, why now and going from being dejected to being angry. You're probably crying a lot, or arguing with him. There is a world of hurt you're seeing now and you can't see the light at the end of the tunnel.
Firstly, try not to get yourself upset physically too much - I mean the shouting, or the crying, etc. That takes a tremendous amount of energy out of you, energy that you don't have, so you'll have to 'borrow' from an overactive immune system. As you're already in debt with the immune system, it will rebel and you'll feel it 10 times worse. I know it will be hard but try to let it go for now. Let him go away and give yourself space to think all through. Do what Scarlett O'Hara did in Gone With The Wind, say to yourself "I'll think about it tomorrow". And then tomorrow try and postpone it again by a day. Then allow yourself to rage against the unfairness for 20 minutes, not more. Go out in the cold and remember how it is to be truly on your own. Test how it feels. If you're scared, stop thinking and go do something with the girls. Ask the girls not to pity you or talk about it, assure them that you'll need to deal with it in your own time. Then repeat that the next day, that allowance of rage kept in check. And so on.
Secondly, remember that leaving is not always forever. People need space to think sometimes and not everyone is brave. We have to deal with the illness because no matter how scared we are, we have to live with it. But others find it really really scary. And they feel if they stay one more day with an ill person, they'll get ill themselves. And then their own mortality comes up and they get scared even more and they run. It is normal, you know. But that doesn't mean they might not come back. I don't know how long you've been together but I'd give it some time - we all need perspective, who knows how this will pan out. And if it doesn't as you wish it, so be it. By then you'd have adjusted to your life without help, we adapt because we have to.
I know that no matter what I say to you now, it will not dull your pain. But you'll find a way to do it, you'll see. The MOST important thing now is your health. You need it to go through this and to support your girls in the long run. Don't allow this to bring you down.
I am very impressed by your comment. Since I didn't have anyone to begin with, no o e was able to leave me. BUT all the rest you said will really help me cope and give me some direction to work on. Thank you.
Wow, what an ass... I cannot believe that just a couple of months ago you were saying that he was so supportive and a great help and now he is leaving you. Maybe you are right and his mother pressured him to do it.
\i know that living with a sick person is tough and a lot of people can't cope with that and leave. But breaking up when there is just two of you is one thing, but breaking up a amily is something else. It is unacceptable. Your man is weak and pathetic and I do not like him at all! I don't really know what to say. Good riddance, perhaps?? I would be so angry.
I'm sure you will be fine though, I would not worry about that. We all have more strength than we think we have and we deal with crap like that becasue there is no other choice!
The only thing I'm sorry about is your girls and the fact that your man has taken away their safe and secure home. What a loser... (Sorry, I should not insult the man, since I don't know his, but what he did says too much about the person he must be...)
Take care of yourself, you will get through this...
I was really sorry to read your post . My husband finds it hard to cope with my illness and copes by absenting himself the majority of the time. He has left me in the past on a number of occasions prior to Dx ( grass is greener syndrome!) and know it is probably only a matter of time.
I hope you have good friends and close family around you. Have you considered ( when the dust settles a bit) perhaps talking to a counsellor through your GP surgery. Sometimes it is good to talk to an impartial third party... A sort of therapeutic safety release valve !
Hi sorry to hear about you partner leaving. I would like to give you some practical advice that can all be organised quite quickly and therefor lessen the stress.
First go to your GP and explain your situation, ask them to refer you to Social services for a social worker for you (not your children).
Phone your council and ask to speak to the Duty Social Worker. Explain to them what has happened and that you need help ASAP, mention you have been to your GP and they are referring you as we'll but phoning gets ball rolling quickly.
Ask who provides the young carers group in your area. Contact them as soon as you can. They will come out and speak to you they get a referral done by GP or social services. My twin boys get taken out every Wednesday after school for two hours, every three weeks they go to the enter for activities and time to talk (they have an older child carer. Mentor to talk to). During the last school holidays they were taken out one day every week and opportunity for a residential holiday. They also do weekend residentials. They collect and drop off you only need to do a packed lunch and they don't need spending money. My boys (6) love the people and like talking to the other children.
Social services will come out and asses your needs and will do a care plan which you agree to then sign. When that is done and you are entitled to help they will pass your details over to the local service provider (mine is The Penderals Trust) they will help you by placing adverts for a carer. They will get all the application forms and send them to you. If you like any of them they will set up an interview for you to interview the people and they will be with you to help (sounds really stressful but honestly its not). When you find the person you like then person has to have a CRB check done (as you have children it should be an advanced check as your children will be in house at holidays etc). You. Then employ the person and they come and work in your house at the times you have agreed. My PA starts at 9.30 on Mondays first thing she does is my tablets into my weekly container, (after boys left for school I go back to bed for an hour) she then helps me up and helps me shower and dress. After that she cleans or prepares food or takes me shopping or hospital appointments. Whatever is in her contract. Mine also when I am able takes me swimming as I put that in the contract as its the only form of exercise I can do.
You can get discount cards from your council for the leisure centres.
I don't know if you claim DLA but if not ring CAB they can sometimes come to you but will help you fill in for s for all benefits. If you get income support you should get a disability premium as well but you have to phone them and tell them if you are already on it as they don't do it otherwise.
Hope some of the information is helpful and I haven't overloaded you. Good luck and if you need message me. I live in North Wales so things might be done slightly different if over the border. Councils are a law unto themselves. If you are local to Chester contact me if you want anything.
Last thing a good website is but you don't look sick.com The spoon theory is good at explaining to others what your life is like and the daily choices you have to make.
People with children in my experience are terrified of social services and struggle to cope as a consequence.
I have seen children of chronically sick and disabled parents really suffer because of this misunderstanding.
The support from social services is to the patient (you) not the children.
I hope things improve soon.
Maybe when you feel stronger you could contact a solicitor to get your partner to provide some of the support which he is legally obliged. It does not matter if you were married or not.
Also... maybe think about what you would do if he comes crawling back for mercy once things get better.
Wow Helen u really are o the ball and organized! I am impressed and sure your post will help many people. I like the "you don't look sick" site and the spoon theory as well.
He hasn't actually gone yet. Practical things to sort out. I'm much more positive now! I've rang the council, as you suggested. I will be having a home visit shortly with regards to practical aids.
Oh my young friend. Ask C.A.B. for help and they will point you in the right direction, but DO see your Doctor asap and they will help - don't ever forget WE are paying their wages!
I can not begin to imagine what you are going through and my heart goes out to you.
What area of the country do you live in - is there anyone in your area who have relatives with Lupus who understand and just Might be able to help. Good Luck.xx
This is not at all uncommon. Often we're seen by weaker partners as the invincable ones that can multi-task and cope with everything. When we suddenly fall ill it's just too scarey for some to cope with. My first husband began an adulterous relationship with his secretary shortly after I was diagnosed (how original, lol) - I kicked his sorry ass out immediately and divorced him. Although times were unbelievably tough in every possible way initially, I've never since regretted it for a moment. But I realise this has all kinds of unpleasant and worrying implications for you right now ... the same as I was forced to go through ... but please maintain faith in your innate ability to survive. You might have to concentrate on carrying on for your girls initially but you will arrive at a much happier place eventually. It's also quite likely you will meet a less selfish, more compassionate person in time who will love you just as you are and want to support you through the hard times. People like this do exist! In the meantime, hugs to you xxx
People cope with chronic illnesses differently, sometimes it a fear of the unknown I have lost a lot of my friends since I was disanoged 4 years ago. People don't know what to say, or do.
You have an inner strength inside you find it it's buried deep right now so it might be hard to find but it's there.
Hi, my suggestions come from 6 years of learning and asking for help. When I was diagnosed my twins were 6 months old, I did find it difficult and was scarred about involving social services. I have found that adult and child services are very separate and unless something severe is happening they don't involve the other.
Mine suggested and referred us to Barnardos Young carers. They also wrote letters so we could apply for financial help to buy a riser recliner and also get money for a holiday.
If you need help financially look on the Turn2us website. We took a long time and went through the a-z list of charities and looked for something that might help us. One is the Florence Nightingale Trust. It was them that helped us buy the chair and also funded a safe for my medicines (opiates etc that have a street value) if people find out you are on medication and your house gets broken into your insurance is void. Tell anybody and everybody you have a safe and your insurance will payout. I found that out via a social worker.
The other people at the council to contact are occupational health as they will assess you and give you any equipment you might need ie cutlery with special handles, perching stool(so you can sit and cook etc) also toilet frames with arms amongst other things.
Glad some of the information I gave helps. Hope this also helps.
As I said I am inNorth Wales and would love to meet anybody in the North West or Wales that just to natter to somebody that understands and so we can pass information on to others.
It must be quite a blow, to the confidence if nothing else. On a practical level you are going to have to rethink how to get the nuts and bolts of daily life working..
Partners and illness is a tricky business, we as fellow sufferers obviously sympathise with you. But we should never forget that your partner has a life to lead, and nobody should force a person to take on anothers suffering or burden.
Unfortunately 's**** happens'... Lots of people will come and go in your life but what really matters is your health. First of all your health and then your children. Usually we say first my kids and then everything else, but in our case things are not that simple. You have to concentrate on being stressless and then focus on your children. And after all if something goes wrong with you what will happen to these kids? As your illness was not your choice, it was not their choice as well to be born. You have to be a strong mother to them. Give them life so that they give you life too. Be productive with them and do not let anything to make you feel sad, stressed or upset. Smile, be positive... look up on the sky and smile. You are alive, strong, you have two wonderful girls and so many amazing moments to expect.
We are all here for you. Do not waste not even a second on grieving for someone who saw to you nothing more than an illness.
Thanks to everyone for their comments and support.
I'm still alive, so can't be too bad!
We are still bickering and going round in circles.
He hasn't left yet, but I don't think it will be long. I'm soooooo tired, physically and emotionally. Having lupus at a time of crisis is so inconvenient!
Glad you're keeping positive. I wasn't a lupy at the time, but when I was in labour with my second child my husband told me he was leaving me for someone else, and he left a few days later. I was left with a newborn and a 2 year old and wondered how on earth I would cope. But of course I did! As others have said, you concentrate on the gorgeous children you have, and eventually you'll be congratulating yourself on how well you've coped and how you don't need your partner. I felt it was better to be alone and struggle with some things than to be with someone who didn't love me enough to stay, and who brought me down.
Wishing you well. You sound sensible and positive, and it's great that Helen has given you such fab practical advice. Keep your chin up. Look towards the light, then the shadows will fall behind you. xxx
So pleased to hear your updates that sound as if you're coping (with two children you don't have a choice really) and are keeping your sense of humour, which is the one thing that has helped me through the worst times. One thing about having a serious illness is that it makes you change your priorities - for the better. For example, negative people are a drain. Losing a few negative people from your life is no bad thing. You can be sure that his mother (another negative person) has been chipping away at her son for quite some time. I was in this situation after diagnosis - prior to having our two children - and was astonished that my partner stuck with me in the face of such pressure. She didn't even try to spare my feelings by making the derogatory comments behind my back! It was a huge education for me regarding how sick and disabled can be viewed and it's a lesson that has made me more sensitive to others' feelings - I hope.
Just try not to waste your energy getting sucked into futile arguments, just put your health and your children first. It's tough now but you know you'll get through it so just try to smile for the girls and look forward to another chapter in your life.
I'm glad that Helen's advice has been so useful. I'd wondered if the sort of assistance people got from social services depended on where they lived in the country. It's good to hear there is so much help out there.
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This is a huge fear of mine, that one day my partner will get fed up and leave. 
and maybe in time, find a better guy! that guy you been with, cant just leave, he has two girls to think about! what is he going to do for them? please please dont let him win! get the help you need and deserve!! BIG HUGS!! and chin up! Find the confidence and ask for help! 
