Feeling like am failing- SLE

[LimeSnail]

Hello everyone! Don’t really know why I’m posting, think am hoping for some positivity/common sense. I’ve recently been diagnosed with SLE and am tired a lot, in pain, going down with viruses etc. I’ve got three small kids and feel like I’m failing them as I am not ‘fun mum’, my husband is having to take care of me often and I’m being a terrible friend/family (cancelling /not seeing people). I’ve always been really active and ‘can do’ but the last few years between kids and health I’ve been such a flake and think it’s had an impact on my relationships. Currently on mat leave and unsure how will manage to go back to work (full on full time job that I love and have battled to get) given if my energy limited I want to be there for kids. It was always going to be v hard to juggle but if health poor feels undoable. Any words of wisdom on how to get more of a handle on things please lovely mums? Reading this back it sounds like I need to prioritise the important stuff and let some things go but it’ll be an adjustment.

I think you know the answer that a full time job plus 3 kids is very hard. Add in chronic illness & it’s likely impossible to do all of it well.

How do your symptoms present? Have the Drs given any medication to mitigate?

@HuskyNew thanks for the reply. Busy day here with Easter eggs etc! yes, that’s kind of where I’ve got to. It’s not a severe version of lupus (no major organ damage-which is lucky) so it’s ‘just’ joint pain, fatigue, issues with my eyes and mouth/voice (not producing enough tears/saliva), rashes, some issues with hands and feet (can’t feel/move some of fingers like I used to etc), some gastrointestinal stuff, possibly some other bits and bobs. It’s a long list together but usually nothing that severe most days. Have been started on a couple of meds, plus other stuff can get over counter eg paracetamol, eye drops etc. Feel like could muddle through with either job or kids with it all but together a lot.

Can you have a big talk with your DH about how to manage? Things like robot hoover, batch cooking, decluttering (so that everything has a place and it’s quick to tidy up) are really helpful.

My DH has fibromyalgia and we have two kids. Ultimately our strategy has been to lower our standards…. then lower them some more… then some more again… and then again (argh)! It doesn’t always feel good but we prioritise what matters to us, eg. kids don’t really do clubs but they always have a proper meal and they aren’t left on screens the whole time.

It’s definitely a challenge. Try watching ‘sort your life out’ and ‘batch from scratch’ TV programmes for a bit of inspiration. But ultimately just give yourself some grace as well 💐💐

It’s helpful to find any websites you can that give you a shortcut in keeping up with SLE (for fibromyalgia it’s the Health Rising blog). This is needed as it’s always important to self advocate. Wishing you really well.

Thanks @NoviceVillager . We are doing a bit of that already but could do more I think. I’ve got a bit of time while on mat leave so could try to get in some better habits and batch cook etc and see how it goes. I hear the lower standards advice loud and clear! My parents were/are incredible neat freaks so it really goes against the grain! Hope you and your DH are managing to get some time for yourselves together between it all