Am so tearful today and just feel like I'm not coping. I'm 38y with 2 small kids and am struggling! I do have a partner tho .
I just can't stop crying today feel like giving up I just feel I can't cope with the pain and constant feeling like this.
The baby doesn't sleep well which doesn't help and I never feel like I've slept, it's like this everyday and it just feels like it will never get better.
I hate moaning but it all got on top of me. Went for my 2 weekly bloods today and couldn't even sit in the waiting rm cos I was crying! Took me 15 mins to stop crying before I could even get out the car!
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Sara_A
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Hello Sarah ASo sorry to hear that you are struggling. Chronic lack of sleep is just the worst, isn't it? I get about 1-2 hours a night and spend the day feeling sick and exhausted. But you have to get on with looking after your children on top of that; it must be so tough.
How far are you able to call on other support? Any chance of your partner doing more childcare? Any household chores that you can just drop in favour of a nap? Any friends or relatives you can call on?
I wonder what your specialist and/or family doctor makes of your situation. Your psychological/emotional health should be as much their responsibility as your physical state? have you talked to them about whether they can help you access more support? A patient support group? Counselling?
Meantime, please don't forget you are not alone in this. Most of us on this forum have been in a similar place, so even if you feel alone in your home, know that you can always talk here. x
My parents only live about 40 mins away but I just feel so awful having to ask for help. I've got friends that I know would help me as they always say if there is anything they can do but part of me doesn't want anyone to see my house messy or to have someone else cleanup our mess. I just get so upset looking at the mess and just can't do it. I know people say to leave it but it makes me feel worse looking at it.
Nobody really cares the drs just say u are depressed and ignore the pain I'm in being the cause of me being fed up.
My partner is good, he does a lot and it's not fair on him. I half think of leaving so that he doesn't have to live with someone like me everyday x
What would you say if your best friend told you these same things - that she feels really ill, in pain, overwhelmed, depressed and hates herself?
I suspect it would be something like -
"Don't worry about being a nuisance - friends are people who help each other when they are in trouble, no?"
"If you feel this bad, I will help you get some more support - maybe more effective pain relief, maybe counselling or anti-depressants...whatever it takes"
"Forget the mess. You are more important than that"
"I love you"
So try saying the same things to yourself that you would say to that friend. And don't feel bad about needing help - we all do, sometimes x
Well said Whisperit. Most parents with young children have a messy house - it's about priorities - you and the children are more important. No-one will judge you so try not to judge yourself.
I wonder also if you could have postnatal depression in addition to your underlying illness. Here's a link to the NHS info which explains that depression is an illness like any other, that postnatal depression is very common, affecting 1 in 10 within a year of giving birth, and that there are treatments available. If your GP hasn't provided support then maybe your health visitor can help? x
Well when I say baby she is 18 months old now! She doesn't sleep well and is quite difficult at times bless her! So it's quite hard work and being tired all the time and worn out just doesn't help.
I've always had some degree of depression but maybe I have to accept it's worse?? I think maybe I don't want to admit that it could be depression because then the drs put everything down to that and treat u like u are making the lupus up! And just say oh that's the depression!
Thanks all for ur help. I just hate asking for help but I know if it was one of my friends I'd be the first there to help them. I've always tried to be independent and do things myself so it's hard now to have to ask for help.
I'm surprised the health visitors aren't told about mothers with long term health poroblems, they don't know anything about my health x
I really sorry you are having such a tough time, it is hard to advice what to do. If you get a stable medication that helps pain would make it easier. Is there anyone that maybe can look after kids during the day so as you can get a sleep. We are all on here to offer some words of support but until pain eases you probably need some friends and family support.
I come on here regularly so happy to chat when you need
You poor thing, it can be so demanding being a mum and put an autoimmune disease on top, plus a restless infant and it’s no wonder you feel ghastly.
There’s a good adage that says : treat what is treatable.So go to your GP and talk about how best to manage your mood. They may be able to refer to a useful care pathway service (not necessarily psychiatric, but there’s plenty of talking therapies etc out there etc). Contact your consultant via their secretary and advise them that your mood is also worsening and you are in a lot of pain and don’t feel your condition is controlled. Speak to your health visitor. They may be able to suggest some useful resources. Try if can to enrol a friend or family member (perhaps with an initial negotiated deadline so you know they’re not going to feel put upon,),and give yourself a break.
Ask your GP if you can be referred to a specialist pain management service. They can sometimes get your pain better controlled and offer Physio for your joint problems etc. If you are depressed you are far more likely to experience severe pain. Drs will not try and attribute all your problems to depression, but if you can try and put yourself in the driving seat and ask to discuss all of this with your GP and say you want a plan of action for all of it, you will have their respect and may feel more in control again.
If you feel you can’t do some of these things then try and recognise the impact a poorly mum has on your children... try and get some sort of help so that you have more energy for both them and you.
I do hope you can sort something out that helps you. And moan away here. You are not odd, wasting anyone’s time or alone. Take care and keep us in touch.
Supportive advice above, just wanted to add that it was told to me by specialists & fellow lupus folks, lupus can include depression as one of the symptoms.. So getting some help and your acceptance that your teariness can be caused not just by the exhaustion, but the lupus may help you get some support for dealing with it, speaking as someone having to face this too. Thanks for sharing and big hug to you... Maybe some from your little ones too..😊 ML
I did finally ask my mum for help yesterday and she is coming today to help me for a few hours to try get on top of things, so that's good. And maybe by me actually asking for help maybe she will be more aware in the future cos I think I prob appear to manage.
Thanks all for ur advice and I have an app to see gp next wk and am going to ring the rheum nurse today to ask her about my mycophenolate. I've just in the last month increased my dose and wonder if it will take several wks for the dose increase to have any affect.
Well done Sara, it’s hard asking for help, but I think once you’ve actually done it, a bit of weight is lifted off you’re shoulders. You have done the right thing. I do hope you manage to come up for air and feel a little less stressed soon. I’m sure the Rheumy nurse will be a good person to speak to. Did not forget that some of the rheumatology conditions can trigger depression as part of their presentation, so it might be an indication that you have a flare and certainly not that you are weak in any way. It will probably be important info for them.
I hope you feel a little brighter soon. Take care.
So sorry your having such a tough time coping with illness and kids but I too want to say well done for asking for help!. It's not that difficult really and as you've had such a good response it won't be hard to do it again!. I just want to add that it will take a while for the increased MMF dosage to take effect so hang in there. I think a pain referral is another great suggestion, they've helped me lots in different ways. You've struggled with pain a long time which is soul destroying in itself!. Lots of TLC to you and take care. X
RubyTuesday2, our community has always been a pillar of strength when I'm at my lowest, so you've done the right thing posting on here. Sorry I can't offer any advice that will help you on this occasion, but I'm sending my love, hugs and best wishes. Hope you feel better in yourself soon xxx
Well done on asking for help. It's very exhausting to be a mother, especially when you have two little ones. I've been there with a baby your age who slept badly, I could hardly think straight, and I wasn't physically ill then. I'd say it's pretty normal to have a messy house when they are at that age, and the kidlets are the most important. Don't be embarrassed by it, please. As others have said, we are always here x
Oh my goodness I cannot believe the response I have had!!! U are all so kind and a few posts have made me cry ha! It actually means such a lot for u to all respond and I'm so grateful uve all taken the time to reply.
I feel a little better today apart from obviously it's raining and have just done the walk to school pushing the pram with joint pain and the terrible stiffness this weather brings!
U are all so amazing thanku for ur support xxxx
Ps I'm already on zomorph twice daily and can top up on liquid too if needed. I've previously done a pain management course but not under pain clinic since re locating 7 yrs ago. I've just started to see a ot so she's going to go thru some fatigue stuff. Also got physio referral x
Dear Sara - I have Lupus and Sjogren's and am sole carer for my husband. So I understand. Things have improved since I started telling people. Our illness isn't too visible or publicised. Take someone with you to a hospital appointment let them sit in with you. Even repeat that with another person - partner then Mum, then friend. Call the Lupus helpline for a chat - it will be productive. Get the information about your condition and give it to ALL those close to you to read. Explain it is a Chronic illness. Go to a Lupus self help group if there is one near you. Sorry for listing but you need to stop soldiering on and get support. People are so busy they don't see - you need to tell them - people have been so kind since I did - good luck and ps try Vit D and B12 in spray form it helped my fatigue. X x
I am glad to read that you have asked your mother for help and that you have booked an appointment with your GP for next week.
Sometimes, certain situations can be overwhelming which is why talking to someone can help relieve worries and anxiety that you may have. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at chanpreet@lupusuk.org.uk . We published a factsheet that contains services and support helplines which may be of interest to you: lupusuk.org.uk/wp-content/u....
Good luck for your upcoming appointment, please let us know how you get on.
I'm so pleased you had a better day. Can't imagine how tough it must be some days with such small children and lupus, especially with the lack of sleep but please don't feel bad ever asking for help , it is a sign of strength to admit to needing it and people actually like to help.
I was going to put a photo of my exceptionally messy house to make you feel yours isn't so bad but I'm not clever enough with the technology! I do know how you feel but I was told by a health visitor (when I apologised for my exceptionally messy house!) that the best mothers have the messiest houses!! I had a big lupus flare this year and it was the first one where I needed a lot of external support and just admitted I couldn't do the house, kids, dog, shopping etc. My friends all pitched in and no one minded at all, in fact they said I should have asked for help before. I'm glad you told your mum and are getting some help.
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I can't cope with this constant fatigue!
I Could Cry but damned if I will
Medication stopped 
Anyone can't tolerate HCQ and why?
