[RachaelH]

Hi,

is anyone else a mum and managing living with lupus and raising children?

I have a six month old and am having a hard time of it at the moment. Consultant advised reducing my meds after I coped well with the pregnancy and labour, now any disrupted night or challenging day is having a big affect on me physically.

I'm breastfeeding so its not like I can hand over the baby to a relative and go and sleep all day!

Any advice/tips appreciated.

Rachael.

 

[LolaLola]

Dear Rachael,
Welcome here, and well done for breastfeeding!
I have no magic advice for you especially as my children are older now but can only tell you that you will get through it. I did!

Make sure you are eating properly and keeping your fluids up and sleep when the baby does.

Babies don't care if the house has been dusted they just want a happy relaxed Mum so don't feel guilty about leaving housework.
x lola

 

[Joanne]

I echo what Lola says.
I've a 21 month old and a 2wk old. Even though my lupus is in remission I still get very tired.
Have you tried expressing breastmilk? It's a bit of extra work, but means someone else can do some of the day or night feeds, letting you get some rest.
The best advice people gave me in the beginning was to forget the housework, and to get rest when the baby sleeps. It can be hard to do when you've ironing piling up around you, but once you get over the thought of wearing clothes that haven't been ironed (people really don't notice!) it really does help

 

[elle-co]

Hi Rachael,

I developed Lupus after having my 2nd daughter (although i didn't get my diagnosis and treatment till much later) she is now 6 but wow do I remember how tough it was, but I managed and you will too. Like Lola and Joanne said, the most important thing is to look after yourself and baby. The other jobs will still be there when you feel up to it, so why rush.
Expressing milk is a wonderful idea to allow you to get some rest, and remember to pamper youself once in a while, you deserve it.

Hugs
Elle x

 

[florie]

hi Rachael,

I agree with what the others say. Get a breast pump and let someone give you a restful sleep. I remember breastfeeding my third child.It wasn't easy and she wouldn't drink from a bottle only the breast, but i did it for 9 months and didn't regret it. Can you substitute some formula if someone can help?

hope this has helped. Let us know how things are going.
hugs to you and baby, florie

 

[greenhaggis]

Welcome Rachel,

Its is tough enough losing sleep with a baby let alone being ill as well!

Like others I would suggest expressing milk - you can get battery/electric powered ones now....so much easier in my opinion.

The other thing I did also (as a couple of mine did not get suffiecient milk from me) was too use formula feeds at night!

Have you a date in mind when you will stop breastfeeding? Please remember, dont feel guilty and beat yourself up if you have to stop breastfeeding.....you have breastfed you baby for 6 months! When are you starting to ween?

Hope you get some rest, perhaps you can find someone during the day to feed your baby, whilst you have a sleep!

Have you started weening yet! With my first 3 kids it was done at 4 months, last kids was supposed to start at 6 months, which was the latest advice! I found that at the 3-4 month stage 3 of my babies (who slept through night at 8-12 weeks), started sleeping less at night. They were getting hungrier.... this was solved by weeing them and boy once they got the knack of eating food they slept really well again (my experience only).

Take care!

 

[onetay]

Rachel,
I have to tell you like many on here my children are all older now and on there own, but they were little when I found out I had lupus. I did not have a baby, or at least I don't think I did when I had lupus.

It is wonderful that you have decided to breastfeed. It has it rewards and it's set backs, as you have found out. You are right about not being able to hand over the baby to family as that just would not work very well. I am not sure what your schedule is like, but something that really helped me in the early years was learning the babies schedule. I would plan to take a mid morning nap with the baby and then again mid afternoon. I did not get to sleep as much as the baby but found a good hour did help. This is good advice for any new mother not just the ones with lupus.

We forget that our bodies went through this big change in a matter of hours, and think we can be superwomen in a day or a week. We have to give ourselves time to heal and for that it takes rest. It would be nice if when your mom or sibblings are there visiting the baby that you take that time to go and lay down to your bed. You do not have to go to sleep but the relaxing time for you might be what you need to make it a couple more hours.

I hope that you feel better soon, and you will make it, but it is hard. By the way happy mother's day.

 

[cjmclaughlin]

Happy mother's day to all of you. I am the mother to a 3 year old and a 4 year old. I was diagnosed with Lupus years before having them and it has definitely been easy raising them but we all do the best that we can. Whenever I get down on having lupus and trying to manage the kids I just remind them that there is no-one else in this world that could ever love them as much as me; illness or no illness. Does that make sense? Take it easy and follow your instinct as it will not lead you wrong.

 

[RachaelH]

Thank you everyone for such supportive replies!

Alas I too have a baby who will not take a bottle, I am hoping as we introduce her to solid foods she will start drinking from a cup. I've tried formula and expressed milk in a bottle to no avail, my husband even spent two weeks trying to introduce a bottle little by little each evening but she only ever managed 6 mouthfuls! She knows what she likes.

Its been tough recently as she has been teething, two teeth already and more on the way. She is very clingy in the day and wakes two or three times each night. After a bad night my joints are noticeably more achy and sore. Having to lug a clingy baby round the following day doesn't exactly help! Managing fatigue and sore joints was sooo much easier without the baby, I never thought I'd find myself saying that! I've been reading up on how to handle babies (bending knees, holding into the body etc) to prevent strain on the back and joints. I'm guilty of bad habits on this front I realise.

I will have to remind myself to take a warm bath, read a book or just veg out a bit more, this is a bit of a wake up call to stop putting my aches and pains bottom of the priority list. Its hard when you have such a cute little bundle trying to get your attention all day.

 

[RachaelH]

PS. is it mothers day in the US? It was in March here in the UK. Strange but I thought somehow they would all be on the same day!

 

[Maia]

On Sunday it's Mother's Day in the US

Congrats on your baby and the physical demands get easier after they are walking well - at least this has been my experience!

 

[keebler]

Hi Rachel,

Could you nurse your little one and then have hubby watch her while you took a quick nap? When I nursed my youngest baby (she is 23 now) my hubby would watch all 3 kids and have me go lay down.

Don't worry about how the house looks. Spending time with your baby is far more important than a clean house. They grow up so way to fast, now is the time to enjoy your little one. You will never regret it.

Love,
Lyn

 

[Hatty]

Hi there

Mine are 3 and 4 and yes, it's extremely hard work to do it all with lupus. However, it's all worth it of course.
Since you are past the really tiny baby bit, a few tips:
Schedules do help. My husband and I now have a system in the morning whereby he gets up first and has a bath etc then leaves it in so I can get straight out of bed and into bath: this enormously helps stiffness. He used to have to physically get the baby out of bed in the morning before we did this as I couldn't lift them until my hands had 'woken up'. Now the children are big enough to walk it's different things that need to be done, but still hot bath really helps.
Only easy baby clothes! Velcro shoes, no fiddly buttons, no laces.
Try and have everything you need on all floors.
Teach your baby to climb stairs as early as you can (obv use stairgates for safety) so you don't have to carry them.
Don't plan too much in one day: have a 'easy' option and a 'harder' option: ie 'if I'm feeling well enough we'll go swimming, if not we'll just go feed the ducks'.
Have stuff that you do (drawing, reading books, snuggling in bed) and stuff that your partner/someone else does (boisterous playing, pushing swings, running, football etc) so that they know they can do such things with someone, just not with you!

Little children are surprisingly happy with surprisingly little - my 3 year old's idea of heaven is still actually to walk round the block as slowly as she likes, talking to all the snails, collecting stones, hopping off doorsteps. ALso extensive snuggling in bed with books is popular at any age!

Right must go lug 3 year old out of bed into bicycle go and pick up 4 year old from school and take them to the park. Hmm... can't say it gets MUCH easier...

x Hatty