LUPUS UK
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Any tips on managing fatigue...esp when having young kids??!!

I’m mainly typing this to try to keep myself awake until my partner gets home 1h 45 mins, not that I’m counting!!!!!!

I’m so exhausted I could cry! But I can’t just go to sleep as I have 2 young children.

Any advice or tips on how to cope better with this awful fatigue?!!!

I currently go to be as soon as I can approx 7pm or maybe 8 pm if kids won’t go straight off. Most nights Dad has to stay up with youngest but I have to go to bed so am useless!

I’m just so tired could literally go out and lay on the pavement! I’m struggling to keep my eyes open.

Any tips if anyone has young children, how do they manage!!?

Thanks

Sara

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How old are they? You might find a blog called Despite Lupus by Sara Gorman gives you some ideas and suggestions - she had both her daughters after her lupus diagnosis and had a pretty strict routine to be able to cope. She also manages to run a business as well so she does know how!!!

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THey are just 5 yrs and almost 2 yrs.

Great thanks I will look at that! Get some ideas x

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Mine are a little older now at 11 and 7 but the 11 yr old has disabilities and probably functioning at a 5 yr old level. I can relate to the overwhelming fatigue and almost urgent feeling of needing to sleep. I go to bed very soon after mine go. They have an early bedtime of 7pm, the 11 yr old goes to sleep straight away and the 7 yr old reads. It really is the only way I can cope at night. During the day I try not to spend all day out and the children are used to me now saying I need to relax a bit before we do something else, difficult for a 2 yr old to understand. In the holidays I use childcare, when the weather is good I go somewhere that I can sit and interact but not fatigue myself more like a park. Where I live there aren't any soft play areas but if there were I'd be going to those! It is really really tough with small children and fatigue. Does your little one have a nap? Could you nap at the same time even in the same bed so you wake when they do? I did this with my youngest, was nice cosy time and we both got to rest.

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We do have a couple of soft play places but one of them is just too difficult for me as my youngest just wants to climb up everywhere and I just can do it it kills me!

I’ve just come up to get into bed and put a dvd on for them in bed with me as couldn’t stsy awake downstairs.

She doesn’t always sleep in the day and sometimes she falls asleep in car so stays in there. I’ve even been known to drive her to sleep park up and sleep too (desperate measures!)

So it’s not everyday that she naps and guarantee the time I think I will sleep too she had about 30/45 mins!!! Not 2 hrs!

She won’t always go to bed at night so has to stay up with Dad, luckily he stays up later and puts her down again later. I just cannot stay up I have to go to bed. This will be it now for me be asleep by 7pm x

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Don't feel bad,I'm in bed too. I don't have a partner so I have a strict routine with the kids. I also stick on DVDs and have a nod off while they watch,I'm a light sleeper so anything happens I wake up. My problem really is that I work so use up my energy there and so little left for home. I can't afford to cut my hours down anymore so this is my life. My kids don't miss out,they go to things but I try to pace myself,I would never accept invitations 2 days in a row and I never go out at night,I try to sleep and recover! 2 yr olds are quite full on so really to sympathise.its tough going

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My son is hyperactive and on the autism spectrum, and I was a single parent from his toddler years. His early years were....interesting. O_O My advice first and foremost is to shelve any guilt about plugging on some telly and having a nap, or getting a video game console or something along those lines, depending on the age of your kidlets, giving them some snacks and curl up for some kip. If you can manage to set up a space in the living room for you to have a doze while they're watching Moana for the nth time, then by all means do it. Make sure they stay in the room with you, and set an alarm so you don't sleep for too long if you're worried. Make an easy lunch if they're pre-school age, or even consider (if you can afford to) a half day of daycare so you can recoup during the week. My son had two days at a special needs nurse which saved my skin. I don't think I could have coped otherwise. If you have the money to do so, then do.

Getting my son an iPad saved me very much indeed when he was younger. It was easy for him to relate to, interactive and so many things he could do. Tablets are a lot cheaper than they used to be, and because of his very short attention span, there were so many things he could do on it that would keep him occupied when I needed a rest. Audio books are great too - we could both listen to a story while he played with his lego and I had a rest.

I imagine, if you're anything like me, it's all the other jobs that are wearing you down like cooking, cleaning, laundry, nappies, and all that sort of thing. It's not always something someone can afford, but if you can get a cleaner in, by all means do so. I had one as well in his younger years as I literally had no energy to go messing about with all that while I was getting four hours of sleep a night (he didn't sleep much, and he used to smear....ick, I spent a lot of time cleaning carpets and walls at 2am...). It's not always feasible if you're struggling financially, but if you can find a corner to cut somewhere to afford it, please try!

As an aside - I recommend this all the time - how is your blood work? Has anaemia been checked? My chronic anaemia was a NIGHTMARE. I could sleep and sleep and sleep and it made zero difference. If this is an issue for you, do what you can to try and get this rectified. How are you eating? Are you too tired to? Can you keep some snacks on hand for you to eat quickly without having to spend energy cooking overmuch? I kept beef jerky, hummus, fresh juice, nuts and seeds and cheese biscuits on hand - sometimes I was too tired to chew (literally) and cup-o-soups were the only way I managed to eat that day. I reserved all my energy for son and took his meals for him (chicken nuggets, chips and fruit when I was too tired for anything else).

I wish you rest and a solution!

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Thanku so much to u both! There are some really useful tips there and also I don’t feel like I’m such a bad parent!

Somedays, like yesterday I could only use one hand so it’s very hard as I can’t even dress my little one or shower.

I don’t get any time on my own, I work just 2 days.

I never feel better from sleep I just want to sleep all the time.

Yes my bloods are fine in that area, my immune system had dropped too low the last couple of wks so had to stop my mycophenolate but yesterday got results and can restart them.

It gets u down looking at the mess everyday.

So thanks u have all been really helpful and I don’t feel like it’s just me now! X

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Hi Sara, just a tip to help with tiredness in the morning it works for me, take a berocca in the morning.

I don’t have young kids anymore but some nights I don’t sleep well at all and find that this helps.

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I’m just so stiff and I’m pain in the mornings it’s so hard to do anything. This week 2 mornings I’ve not even been able to shower ( don’t worry I have had a good wash!) everything just hurts and like yesterday I only had one hand as couldn’t use my left hand as too painful.

I’m going to go and get some today! Anything is worth a go! I went to bed at 6.30 pm last night til 6.20 this am and still feel rubbish like I need to sleep x

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Hi Sara

Do you have any local children centres near by? Have a google.

I have one near me, and they offer help in vast amount of areas. When my son was younger he went to affordable chikdcare . 2.5 hours for £2.50

They also helped me in other areas where I was struggling and got me a lot of outside support.

X

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I just feel bit bad putting her in nursery when I’m at home, sounds silly really I know! I just feel that I should have her at home with me.

She is starting nursery a day at wk next month but that’s when I’m at work.

Just been on school run had to drive today 2min drive 10 min walk ( I have a blue badge so can park right outside) she was really good walking into the playground until getting back in the car! I nearly had to ask someone to pick her up for me as I can’t bend down to get her and can only lift her with inside of my elbows or forearms. I feel like a terrible parent as can’t even do those simple things!

Maybe by midweek I need a break for a few hrs so that I can manage/ function better.

The health visitors have never asked if I need any help they see that I wear splints on both hands and know I’m on a lot of meds inc morphine but still never ask if I’m ok! X

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please don't get sucked into this idea of what 'good parenting' should look like. You need respite, and definitely should take it. Do parenting for what is right for YOU and your family, and not by what you see or think you should do compared to other people isn't what parenting is about. Would a parent without arms be a bad parent for not being able to pick up their child? Certainly not! I think the 'Pinterest Parent' ideal has a lot to answer for, imo - comparing yourself to other people is a fast track to Guiltsville and won't do you any good.

Please, please try to get your child into nursery or some kind of play group, even if it's just for a few hours.

A health visitor won't ask if you need help as they don't want to make new parents feel nervous. That's a job for adult and social services, but the latter is very stretched and you'd be on a long waiting list. However I would also bring it up with your specialist that the fatigue is so bad - I technically don't have lupus either, officially my specialist went with seronegative arthritis but the treatment imo feels much the same. In my case it was because the first line of DMARD wasn't working as effectively, and it might be the same in your case if you're struggling to move and in that much pain.

You're doing the best you can do; give yourself some credit! You just need to do parenting differently, which doesn't automatically translate to 'wrong'.

I wish you rest!

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Ah thanku! U are right!

I said to my partner this am I’m gonna have to drive to school this morning (3 min dive 10 min walk) and I have a blue badge so can park right outside when I feel so bad like this, but I said oh everyone will think well she walks most of the time! He was like, no they won’t nobody will notice or care!

I like to walk to keep myself going, it’s mostly ok, most days the way back I’m limping but need to keep trying.

I think I ‘think’ too much and just need to learn not to care about what other people might be thinking!

I tried azathioprine twice and now mycophenolate ( stopped last wk as immune system went too low) they said I can restart it now as bloods ok again. I’ve increased my steroids again today, just had to buy really don’t like doing that.

I see cons every 12 wks for last 2 yrs since my daughter was born as it just won’t calm down, I have sle and aps. So he knows how awful the fatigue is but I think they just can’t do anything more for it.

My back doesn’t move from half way down by back to my pelvis. So depending on a new mri they may be able to try something else.

It’s weird because we look so ‘well’ I even start doubting things myself and think maybe there’s actually nothing wrong!

Anyway moan over gonna think how to get back to school for pick up now!!

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Never ever feel guilty about this you didn’t ask for this terrible disease ask and take anyone help when they offer to give it some days will be hard some might be wee bit easier but please never feel guilty I have twin girls 6 and I feel I’ve missed out on their life so far but when I’m good I make up for it they under stand more now even asking how you feel today dad if your ok can you do stuff with us best thing I ever done was get them iPads tho lol everyone on here is always good at replying so never feel alone if u need to talk or moan about stuff it’s good to get off your chest and not to bottle up yours curly x

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Sounds like you are doing a great job Sara_A x

I can identify with the fatigue and guilt (my bloods I'm told dont quite meet criteria for SLE but I have APS and dreadful fatigue). I also have 2 little ones.

I agree with lisalou19. Take any help with can get. If you can get a few hours childcare the days you are at home and get a few hours to yourself, both you AND the children will benefit. Happy mother=happy children and all that...

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Hi Sara_A,

We have a blog article which compiled information and advice about managing fatigue which you may find helpful - lupusuk.org.uk/managing-fat...

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Hi Sara again, are you in England or Scotland? The reason I ask is I'm a health visitor in Scotland and I would be happy for you to send me a private message and I can help you go about getting some childcare or atleast tell you how you can try given your health issues.

Please don't feel bad about putting her in child care for a couple of hours. She will have a ball and you get a little rest. That extra stimulation will help tire her out as well as giving you head space, everyone benefits!

I used to keep a small packet of sweets in the car to bribe my son when he decided to freak out about getting in the car and being strapped in, bribery not very pc these day by parenting police so think of it as a motivator!!

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Ha thanku! I’m gonna have to resort to that! U are right, we just have to do what we have to do.

Whether the strop tired her out or she was still tired anyway, we both fell asleep on sofa this morning for about 2 1/2 hrs! Thank goodness!

I’m in England, financially we are ok so could afford more childcare but it’s just been that I feel bad, but u are all right so am going to look into it.

Thanku!

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Keep going Sara, you sound like a lovely mum trying to do an awful lot. I'm disappointed your health visitor didn't think to ask about the splints/ health and if they could help in any way. Perhaps I work very differently because of my own health issues but there is an awful lot they could have helped you with or sign posted you on to

im not exactly the parent I thought I was going to be, some days I wake up and think today will be the day I'm going to get them out for walks,to the beach,scooters etc and it all just doesn't work out like that. The I go to bed feeling like the worst mother.

I also ditched social media, it has a lot to answer for as so many people post these photos of wonderful,energetic days out and it was making me feel rather inadequate. Instead I try to remind myself that sitting together watching a DVD, teaching them to make a sandwich and playing games is just as good and I can manage that without being flattened for a week

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It’s hard lovely. I’m blessed to have a boy, he turned 9 the other week. It’s really hard as we used to go swimming and now I struggle. He made bed at 10x the speed I do. I have found sitting down and doing arts and craft or movie duvet day helps. I make the promise to do swimming or an activity I know will push my limits at least once a month but his dad does a lot of the physical, running etc and I do the calm quiet things and the housework xx

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I have 4 children, ages 14, 13, 9, & 4. Luckily the older children are now old enough to help me watch and feed the younger ones on the more tired and painful days. So I have extra hands and eyes on the 4 yo once the older ones get home from school. To make it through the morning and early afternoon though I was drinking so much coffee, I was always out of coffee creamer and it would make me have to pee every 30 mins. I asked my brother, who was working at a health food store, if they sold any pills or supplements at his work that could take the place of the coffee. He gave me a bottle of supplements called "Up Your Gas". I was really surprised at how well they work! No jitters or extra bathroom trips. (I would advise not to take on empty stomach though) I take one or two in the morning, depending on how tired I feel (I usually need 2), and sometimes another one after lunch to make it through til my help gets home. My 4 yo does love playing on the tablet too. It will occupy him all day if I allow it. I feel guilty though about him having too much "screen time", so I try not to let it be an everyday thing. Another thing that quietly occupies my kids for long periods of time is play-doh. I don't feel guilty about them staring at a screen and I like that they are using their imaginations. Your two could play with it together and you could tell your 5 yo to tell the 2 yo not to eat the doh or anything in case you had your eyes closed. You can also make your own play-doh at home (super easy), so it's cheap and won't hurt them if they did eat it. I hope these suggestions help. Good luck and please keep all doors locked when you do take time for a rest or a nap. I have a slide chain lock on my door all the way up at the very top (I got a particular model that also comes with a key, when the key is removed it cannot be unlocked. So I can put the key in my pocket, close my eyes and be secure knowing my kids cannot open the door). Kids WILL unlock deadbolts and venture outside, even push stuff over to the door and climb on top to open a lower placed chain lock.

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