LUPUS UK
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Feel useless!!

Just having a bad day!!

Am at home with the kids as partner works Saturdays but by this time of the week I’m literally done in and like a zombie! I feel so tired and exhausted with fatigue that I feel just useless!!

I’m literally waiting for Dad to get home so I can go to bed! What sort of a parent is that!!

We did have friends round to play this morning so it’s not like I’ve done nothing with the kids but I just want to cry.

This is pretty much my life and I feel so bad for my partner what life is it for him??! Having a partner who goes to bed with the kids and so tired all the time.

I can just never see an end to this cycle.

I’ve just about made the kids t but as for anyone else I’ve not got the energy so my partner will prob for about the 4th or 5th night in a wk need to sort his own t again!

I feel useless and really bad. It’s not fair on him as it’s all the time it’s not like when u are just ill now and again and they have to help out, it’s constant for them.

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I'm sure he doesn't mind and stands by you and thankful you are there for the kids. Tired or not. Warmer months always seem the worst. Just work round your tiredness.

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Hi Sara. I don't have children but am so exhausted from work I spend all my evenings and weekends in bed. My partner does all the housework and cooks all the meals too so I share your feeling of guilt. It is a terrible feeling to live with isn't it. I just wish I could have one day where I could manage to cook a meal for him. I'm sorry I don't really have any words of help but just wanted you to know that I understand and that you are not alone. Take care xx

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That’s good enough for me to just know that it’s not just me (obviously I’m sorry that u are like this too!!) but it makes u feel better to know that it’s not just you and someone else knows how u feel. So thanku.

I don’t know really what I was expecting people to say to be honest! What can they say at someone essentially just moaning I guess! X

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And I know they say they don’t mind and it’s ok etc but how can it be??!!! I know at the moment he’s ok cos on an evening he can watch football or play on his play station game so he’s quite happy with that!

I just always feel like I’m constantly waiting til I can go back to bed! Like u by the sounds of things?! I can only manage to work 12 hrs a wk now, do u work full time??? But then going to work for me is probably easier than being at home sometimes as the kids can be very demanding (aged 2 and 5 yrs) so I get a bit of a rest at work!

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I'm exactly the same. I spend most of my days battling on and counting down the hours until I can sleep again. Its no way to live really. I have recently cut my hours down to 22 rather than full time as it was killing me! I don't have children though and still struggle. I would love children but I just don't feel I would be able to manage with the fatigue. This is a cruel cruel illness!

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Hey Sara_A,

You know that loads of us have been, or still are, in the same kind of situation and have the same kind of feelings, don't you? You're not alone, not by a long chalk!

And you are doing the best you can. No-one could ask more than that. You're already ill, so try to be kind to yourself x

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I think I’ve done his t once this wk! Which is bad really cos he works a long day and shouldn’t have to come home and get his own t.

We go upstairs to get the kids to bed for about 7pm, I have to lay with the 2 yr old to get her to sleep and that’s it, never to be seen again ha ha!!

I wish there was an end in sight, like if u had a broken leg or were recovering from an operation and were just waiting to get back to normal again.

On a different subject I was in the school playground the other day and I wear splints on my wrists especially when I have to push the pushchair and another parent said ‘oh what have u been doing, have u been in a fight!’ It’s the dreaded question I find, as u then have to try to explain what lupus is!! As nobody’s ever blooming heard of it!!! And then ur there for about 20 minutes trying to explain why you might look quite well but feel so c**p!!

Anyway that was totally off the subject but I just never know what to say cos u just know they aren’t gonna have heard of lupus or aps!

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You sound as if you have very normal, energetic children. They have a mum who battles through her illness to be the best mother she can be ( which is all we can be) because she loves them so much. They must be happy. I love the idea of you snuggling with the bedtime story. You are not the first to fall asleep to that and I wasn't ill then.

You also have a husband who doesn't come home expecting his pipe, warm slippers and tea on the table. I'm not saying you have no reason to wish hard you could do more. In fact, I admire you very much for not just giving in.

My boys have flown the nest, so it's only me and the dog. I think I hoovered about 6 months ago. As long as there's no chance of catching cholera or Black Death, that's it for housework. Yes, I feel exhausted too, with far less reason to be so than you.

Once again, I admire your fighting spirit x

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I saw a family video a friend had made of us recently. It was when my children were 5, 2 and 10 months. I’m just a useless, humourless jelly while my husband looks spritely and preps all the food, does the housework and organises the children and our visiting friends. At one stage my 2 year old and 5 year old ask why mummy is always sloping off to bed!

These days I know what’s wrong but back in those days I had Sjögren’s and Hypothyrodism both still undiagnosed. I looked and felt much worse than I do now.

And our children have grown into three successful and well rounded young men. Life is much easier and I have more ambition and energy and my sense of humour is back!

Just wanted to let you know that there’s loads to look forward to - not least watching your children blossom. Child rearing years are hard for us autoimmuners due to the expectations society puts on young parents, the pain and fatigue of chronic illness.

Please don’t beat yourself up - you are doing a grand job and your partner sounds perfectly happy and understanding about making his own tea and clearly enjoys the relax time on his own too - it won’t be forever I’m sure. X

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Very encouraging Twitchy..for all the young mothers Xx

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Today is Sunday, the only day we get all together and I have had 2 hours being up out of bed and now I’m having to go back up to bed. )Have had to go down the stairs on my bum this morning as had no energy to walk down!)

I don’t like spending the day or even half the day in bed I’m one of those that doesn’t like to waste the day. I like to be getting things done and not sitting around.

I feel drained and wiped out today and have pain in my wrists, I have managed to help tidy the toys in the lounge with my grabber that ot gave me which is very useful! And that’s it for me and back off to bed😣😣😣☹️

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Sara,

I can only imagine what you are going through..My girls are raised and have children of their own...my grandchildren live kind of with us(husband and me) different house but same property...anyhow I watch my daughter do what she does all day...just like I did when I was raising daughters...But Now with Lupus, I just look at it all(childrens needs/wants) and say...I just could not have done it if I was DX'd at a young age...I feel for all of you young mothers..and yes the husbands....My husband has sjogens, so at least we get it ,and are age 63...

Xx

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Well I’m out of bed at least but only to the sofa! Feel so lazy but just don’t have the energy to do a single thing!

Will be back to bed in about 3 hrs and that’s it another wasted day!

I hate that u don’t appear or look ill so it doesn’t seem justified to be sat doing nothing!

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Do you take medication?

I hate having to take it, but it makes such a difference to how I feel. The hydroxychloroquine clears my mind, BUT it wasn’t enough & I was prescribed Mycophenolat which makes the painful joints etc much better. It made me feel rubbish to begin with and I take a small dose but the longer I’ve taken the better I’ve felt, both Lupus and drug side effects are fairly quiet.

Maybe you need to go back to the Doctor and get more help.

And remember, most parents of small children struggle at times, so it’s not surprising you struggle more with a disorder to deal with as well.

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Oh yes!!

I’m on mycophenolate, steroids, hydroxy,zomorph plus many others! Total of approx 30 tablets a day!

Yes it’s very difficult! I got to work this morning (I work 10-4pm just 2days a wk now) and had to lay down when I got there! I literally could have laid on the pavement as I had to walk a bit further to work today. Only about 10 min walk but I usually walk 3 mins from my blue badge usual space.

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Oh my gosh what a lot of medication. Poor you, so much medication and you still feel so rubbish.

Today I had to come home from work early, but I think I’m getting a bug that’s going around.

I hope you get a break soon and feel a bit better.

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Hi Sara,

Having a 5, 9 and 10 year old I can really relate to how your feeling. Home life has really changed for us. They've watched their very active Mummy turn into a woman who like you sometimes simply cannot even manage cooking a dinner. I used to try and hide things a lot from them (thought I was masking things very well) until my 2 eldest tag teamed against me and asked if I was dying-massive reality check for me. I sat them down with my husband and told them all about lupus and the sypmtoms I suffer with. Honestly I have never seen 2 kid's so relieved. Since that talk which only happened a couple of month's ago. they really really help! They pitch in with daily chores, they also have asked me to teach them how to do lot's of things, ie, work the washing machine, use the microwave etc. Now thing's are much better at home. My 10 year old son also recognises when I'm having a really tough day and will say 'rash is back on your face Mum, rest today'. We call it 'slummy Mummy' mode on my bad days to make light of it, my 5 year old loves it, as to her that means movie's, PJ's and blankets on the sofa either after school or on the weekends if hubby is at work. It balances out as when I have my good day's it is always first and foremost spent with them, doing whatever it is we would normally do before lupus took hold of me. I used to worry it was all too much responsibility for them but it's not and We've all had to accept life is just different for us all now but we try and just make the most of it.

The biggest struggle for me has been asking for help, I'm very independent who is used to being the carer and 'fixer' of things with both friends and family but as we all know Lupus strips us of that luxury! Ask for help and remember your not being a bad Mum or partner, your simply unwell. The way I see it is I'm letting them down if I do push myself rather then rest. Not listening and not resting for me means I'm completely out of it for a few day's. Be kind to yourself and remember nobody around you will know what you need and how your feeling until you tell them.

I really hope your feeling slightly better xxxxxxx

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I love that ‘slummy mummy’ !!

Yes that all makes a lot of sense thanku!

My eldest is 5 yrs old and has started doing a few more things for himself so I know it will get easier but I don’t want to wish their baby/child like years away. I want to enjoy it all and not be too tired to see it.

Thanks for the lovely reply x

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