Newbie: looking after young children

poorlychief

Hi

I am new to this site but just wanted to see if anyone else is looking after young children while also having RA or other similarly lovely companion?!

I am 35 and developed ra after when my now 2 year old daughter was 5 weeks old. It's all rather a long story but I then had a lirtle boy who is now 3 months old and now I am struggling to cope- I am angry and bitter and full if regret and not coping with feeling like this because its not who I am(or at least was)! Anyway, does anyone else have little ones and any suggestions how to cope on days that the ra wins and you can't barely get iut of bed or raise a smile let alone handle side effects of drugs and looking after two tiny people who need you to get it together?
Thanks x

[Deleted User]

Hi poorlychief

Welcome to the Arthritis Care forums although I'm sorry you have had to find us given your circumstances.

There are a lovely group of people here and I'm sure someone will be along soon to answer some of your questions.

If you have any difficulties with posting or need technical support, do not hesitate to ask.

All best wishes
Mod B

LignumVitae

Hello Poorlychief,

I'm sorry you had to find us but welcome and make yourself at home! Me!! I do. I am also 35 and have 20 month old twin girls. I know just where you are coming from. I spent this summer with my meds failing and enduring a monster flare. I am now a bit better having started anti-tnf therapy. What meds are you on? My first suggestion depending on where you are at with treatment is that you contact your rheumatologist and ask for a review/ appointment/ to see your rheumy nurse. They may be able to help you.

As for children - my rheumy nurse was amazing and gave me a strict talking to, she explained that at your worst they can actually cope with minimal effort so tins of spaghetti or beans are fine for a meal, as are things like peanut butter on toast. You can cut corners like that. My two love a bowl of cheese, tomatoes, olive and then some toast or a crumpet. Cooked mini sausages are another. Having things like that in mean I can sit by the fridge door and just pull something out and plonk it in front of them.

I tend to hold some toys back so on those really really bad days the reserved toys which are rarely seen make an appearance - I have a bag of baby lego, a jigsaw and crayons and paper as well as an aquadoodle. All pretty much mess free and the novelty of them keeps the girls quiet for ages. I've perfected a sore morning routine of lying in bed with the ipad and postman pat or similar. I don't normally do lots of TV but it's lovely to have a warm cuddle whilst my meds kick in rather than trying to dress children.

Clothes are another thing - leggings and pull on tops means minimal fussy fastenings. My two were out of baby gros sharpish for that reason. If you live with a partner then how much can they do before or after work? Mr LV leaves very early but has usually sorted dishwasher, dogs, filled cups and set up highchairs. When he returns he washes up, sorts bedtime clothes and does anything, like taking lids off cups, which I can't do...I've also been known to be in bed minutes after the girls just so I can rest.

If you can get help from a friend, neighbour or family then take all of the help you can find. Even if it means somebody taking your two year old to the park so you can rest with your cuddly lovely baby.

Drop the guilt and anger. I understand it but those things will tire you out. Your children won't know you aren't doing the job you'd want to do and the good parts of the day will be what they remember - I often lie on the floor and read stories in exagerated voices. My girls love it, they don't know I'm in lots of pain and struggling to cope with simply being at that point and they will never realise it. They just think they are having a story. Equally, when they were tiny we spent a lot of time on the baby mat with me lying there contemplating my discomfort and them lying there contemplating rolling - they were early rollers so it isnt all bad. By two you can make use of children too, this is something I love to do because the girls enjoy my exploitation they love emptying the washer for me which means no bending down - sometimes I have to retrieve socks and knickers from the lounge where they have been taken but that is a small price to pay. The girls love to help and in return they save me a job - they are also learning whilst doing and that is important - they are learning to be useful as well as learning to complete tasks. I bet a two year old can help with some bits of looking after a baby too... even if it is just getting baby wipes out of a packet which si something that frequently defeats me. I hope that helps - it is probably a bit of a splurge of words. keep coming to talk to us though. We understand how you feel and I may have spent some of yesterday crying that my girls didn't get out as much as they would to groups because I simply can't manage it...I have now been reassured by enough people that they are sociable and confident enough for that to not matter.
Take good care and contact me by message if you want to talk directly to me a bit more. LV

theresak

Hi Poorlychief,

I`m way past the baby stage - even my grandsons are not babies now, but I just wanted to welcome you to the forum.

LV has given some fantastic advice - she`s amazing the way she deals with twins, dogs, cats and anything life throws at her, so all her advice is well worth listening too.

Take care,

Tezz x

stickywicket

Hello poorlychief and welcome from me, too. It's many years since I had to cope with two small children plus RA and it was very tough indeed albeit full of compensations. My RA flared badly after both births and, on both occasions, took a long time to stabilise on new meds. I think it's fairly normal, probably due to all the hormonal changes.

You couldn't have a better person to advise you than LignumVitae who has triumphed over a great deal of adversity both during and after pregnancy.

Please accept any help you can get. Maybe ask your Local Government Adult Social Care Dept. to send an Occupational Therapist out for helpful suggestions.

The 'angry, bitter and full of regret' will, unfortunately, make things worse rather than better. Would it help to talk to someone about it? Our Helpline people? A counsellor? Dealing with negative emotions isn't giving in. On the contrary, it's about learning how not to.

barbara12

Hello Poorlychief
Im another one that is past the children stage ..and at 64 retired thank goodness..but like SW says you could have asked for a better person than our LV to advise you, I really do wish you well and if you need to unload we are always here, it really will help with the anger...and we all know what that is like..x