My partner and I live together mostly at mine weekdays his at the weekend if we're not working.
He went to work Thursday morning knowing I was having a really bad flare. He decided to stay at his so I can rest great very thoughtful cause all I'll do is sleep. He's still not come back as I need my rest while he's sitting in his garden fire pit going getting drunk. I'm thinking he's used my flare up as an excuse xxx
Hi my lovely .....I'm on my own and personally I wouldnt have it any other way.i simply havent got the energy to consider and stress over anyone else. It take me all my time and energy just to do the basics for myself my son and the dog.you need to concentrate on getting through this flare and not stressing about him.i can also see the other side.we dont know what it's like for those who live with us and see us battling an illness they dont understand.i know we never get a break but I guess they need one sometimes.big hug xxx
It's just frustrating I know he needs some time out he hasn't phoned today just text xx
I think when we are ill it's very easy to over think things especially if you are in bed unable to concentrate on anything else.maybe he doesnt want to ring in case you are sleeping .if it makes you feel better give him a call otherwise let it lie and see what tomorrow brings.either way try not to stress as you know it wont help your flare up.....xxxx
I was devestated when my ex left me because of lupus but after a year or so I realised how much worse he made my condition by putting bso much pressure on me to be well. I'm happier alone now and if anyone else ever comes my way then they have to love me and accept me lupus and all! X
Really sorry your having a bad flaire at the moment- I honestly think your partner is thinking he’s doing the right thing and just giving you time to rest on your own - he probably dosnt realise that your upset about it - think it’s a general man thing - sorry all the men out there - maybe just ring him and explain how your feeling - sending hugs 🤗
I can understand where you are coming from. Although you feel awful and want to rest you also probably want himmto show that he cares, maybe give you a hug and make you a cuppa?
I can see both sides.
If I am totally honest he sounds a bit like my ex. That's not to say that you're going to break up because this is just one event where he probably doesn't realise that he has upset you.
My ex was more than happy to be the adoring boyfriend when I was "well" and could go out and be fun but he would walk away from me when I was in a flare and in agony. I was probably a bit needy but had only just been diagnosed, I if just asked for a hug he'd push me away and tell me to "take the pain in the chin."
I think it's important for people who we live with to have their own time out but you come with lupus unfortunately. You shouldn't have to apologise or be made to feel bad about your health condition. So if he loves you he has to live the fun and happy side of you AND he has to love the you in a flare who needs a bit of emotional support at times.
I hope I haven't overstepped bthe mark. I'm just speaking from experience. Lupus is such an awful disease to manage and any relationship stress will make it alot worse.
Take care and rest up x
He's done this more than once when I'm good he's great when I'm bad he takes a step back I knew it was going to happen. First time I had injections in both wrists for carpal tunnel he drove me home helped me into bed then left. I'm trying not to over react but he's posting on twitter gazebo up fire pit going nice cold beer. It's like he's stepped back into his single life without a thought or care about me xxx
I absolutely know that feeling. I can't judge him because I don't know him but maybe you need to tell him exactly what you've just said.
I will say this. I've been diagnosed for 5 years now but probably had lupus all of my life.
In my 20s and way 30s I was in relationships and I out up with alot of s*** because of my health. I had no idea what was wrong with me and I felt like I was constantly apologising for being unwell.
When I finally got diagnosed my partner left me 3 months after diagnosis because I had not got better after 3 months if HCQ and I had gained weight on steroids
Know this: Lupus is hard enough for you to live with. You have it day in and day out everyday of your life. You need all the energy that you have to fight this awful disease and it's symptoms that it brings. Anything that takes your energy away from you in a negative form ( worrying about boyfriends) will be energy spent on worrying and not spent on you and your recovery.
Right now you are spending energy worrying about what he is doing instead of using that energy to recharge your body. Only you can decide if it is worth it.
Once again, I am sorry if I have overstepped the mark but I always speak frankly on this forum. I wish someone had been as Frank with me 5 years ago because it would have helped me.
Remember stress fuels Lupus so rest up and hug yourself .x
Thank you for your honesty I find it is always the best way. We split up before because he couldn't cope when I was exhausted or had to cancel things now he's canceling on me I've to accept it when I cancel he gets annoyed xxx
Always here to listen. I try not to judge but obviously feel protective of those with Lupus.
Just keep in mind the effect that things have on you and your health/recovery. That is all I would say.
Sorry you’re having a really bad flare that must be very difficult. I don’t suffer with lupus but I watch my daughter suffer daily. Sometimes I just want a break from being unable to solve the problem or make it better. The sense of failure that as a mom I can’t make this go away is awful.
I wise person taught me that we judge ourselves by our intentions and others by their behaviour. It’s been wisdom that has been unparalleled in its effects on my daily dealings with others.
My suggestion would to be look at his possible intentions? As you mentioned maybe it is to give you space, maybe he doesn’t want to make things worse, maybe he finds it very difficult to watch you being so ill when he can’t fix things.
Men deal with things very differently and men and women tend to judge the other based on how they would react as opposed to how the other sex would react.
May I suggest you read Men are from Mars and Women from Venus?
If my husband is unwell he wants to be left alone, he doesn’t want any fuss he just wants to sleep off whatever the problem is. If it is mental anguish he will need to sort it out in his head first before discussing it. So I’ve had to learn to give him space and learn it’s not because he thinks I’m not helpful or he doesn’t want me - it’s that he just needs to deal with it himself.
If I’m unwell I appreciate company and his presence and I need to talk out any anxieties or worries I have until they are all talked out - but I don’t particularly want the solution from him So he has had to learn to listen and not jump in with the solution and more importantly NOT leave me on all on my own all the time.
Have you spoken to him about how you feel? Have you explained what you find helpful during a flare and what you would appreciate from him? Coming at it from how you feel when things are calm and your emotions aren’t heightened and neither are his so neither of you need to feel defensive.
If after a calm conversation where you can both lay down your needs and expectations then if he decided he can’t meet those, although it will be painful then you will know whether this is a relationship you both want to pursue or end.
I hope I’ve not over stepped the mark - but I figure you’ve asked for opinions so you must want them.
I hope you feel better soon and can work things out together for the best x
I I can relate too kat-... Lupus has teach me a lot. I have learnt how to be on my own
live in my own world without beging for help or anyone. I build my castle which is my lupus life... I'm in-charge of my territory..... This lupus has come to stay be happy with your life and have fun....
I always play fast one on lupus before I get cut...
Send you love from London💖💖💖💖🙏
Like you I'm on my own and have no intentions of changing that.lupus has taught me many things too.....like put myself first.clearing out the negative people in my life that drained me was one of those lightbulb moments.my home is my sanctuary where I can relax rest and recuperate stress free.there is no one to complain tea isnt ready or the housework isnt done.no arguments because I'm unwell or sleeping again.the only one who looks at me when tea isnt ready is the dog 🙄.energy is in such short supply with lupus I dont see the point in wasting it on a relationship there are more important worth while causes to spend our precious energy on like our own quality of life.❤❤
Your words ring so true.
This sounds like a communication issue to me but totally fixable so don't worry. When I was unwell in the early days of our relationship my husband (then boyfriend) used to always leave me alone and go play games etc (his way to relax) so that he didn't bother me. He also would limit phone contact so that he didn't accidentally wake me when I'd finally managed to sleep. I felt lonely and needy, then got annoyed at him for wanting to play his games instead of be with me.
After a long chat about how isolated I felt when sick, and what I wanted from him precisely, this totally changed. He now checks in on me and asks whether I need a cuddle or to be left alone. He will be close by and when he's away for any reason (or more likely I'm in hospital) he will tell me when he's stopping contact so that I can sleep. If I text or call then he knows I'm awake and he can reply.
Having a chronic illness is tough on those we love as well as us, but it can make our relationships even stronger. You both need to talk and understand what the other person wants or needs. Then you can work on meeting those. This is vital in any relationship but something that a lot of people don't manage. With chronic illness it's even more important because it can be quite an isolating thing where people feel like nobody else understands. Of course nobody has the same lived experience, but that doesn't mean they can't learn to understand your needs and wants.
It sounds like he loves you and wants to do the 'right thing'. You just need to help him understand what that looks like to you. This can be hard when you're struggling physically so it might be best to make some notes of what you want or need, and then have that conversation calmly once this flare is under control.
All the best and I hope you feel better soon.
Love what you said here, totally agree 👍🏾💓
Kat I am so very sorry that you are in a bad flare which is exacerbated by your stress and distress bout the way in which your partner is behaving. I cannot make any comment about his commitment but I can tell you that when I am in a flare I am extremely emotional and frequently over react. You need to put yourself first and get through this flare then have a frank and honest conversation about how bad he has made you feel. If he cannot comprehend or change his behaviour to be there for you in good times and bad, then you have to consider the future. You are wonderful, strong, funny and caring. You deserve the very best and to be loved and cherished. I truly hope that you feel better soon . Sending big Cwtches xx
Hi thanks everyone for your advice. He came to see me this afternoon I said I understand that when I'm in bed asleep it's not fun for him but he also needs to understand that leaving me alone isn't always the best option. I know in his heart he meant well now I've explained how I feel and I guess this is the worst flare I've had in about a year so I can imagine it's really hard on him.
I'm not feeling great today might phone GP tomorrow I can cope with the pain but the exhaustion and nausea doesn't seem to be getting any better. Thank you all so much for your kind words and support ❤️ xxx
Day 3 of sofa rest for me my tiredness doesnt seem to be easing much either.i hope you manage some restful sleep and your gp can give you some practical support tomorrow 💐 😘 xxx
if it was me i think it would be an overreaction, but every relationship is different so it depends on how yours is
should I worry, I am worried but should I
Should the household be returning to work?
Have I got lupus or am I mad?!
I am so angry update
