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Parenting a Toddler When You Are Chronically Ill

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LeChatNoir28 Sun 07-Jul-19 14:11:59

Hi. I have a chronic illness that unfortunately worsened considerably and unexpectedly after I had my 3rd child 3 years ago. I am in constant pain and sometimes the related fatigue is debilitating to the point that it takes conscious, physically exhausting effort just to keep breathing. I have to lie down a lot on the sofa and my 3 year old and I just survive in the lounge together until Daddy gets home from work. He doesn't get taken to the park, he occasionally gets taken to a special invite-only playgroup for parents who need additional support on my mobility scooter when I feel well enough to go, he lives off instant junk food like crackers and crisps when I feel like this, that I can get easily for him and need no preparation, and he just watches crappy YouTube channels all day or plays by himself. I am barely getting myself through the day when I feel like this, never mind providing a nurturing stimulating environment for him that he needs 😔 He goes to a childminder 2 days a week to A) give me much needed respite and B) give him more of what he needs but that is the only support we get as we have no family nearby and no friends to help. I am very isolated, unable to get out much, and feel like I am failing him completely. When I get like this, I can't even sing songs or read him a story as they make me too breathless and lightheaded, and I daren't do anything that might make me physically unable to even supervise him and keep him safe. Being conscious is a bare minimum with a toddler but at least I can just about achieve that as long as I lie still and barely move, which is hardly good for a toddler who needs an active involved parent 😔

I need practical tips please on how I can give him more of what he needs given my very limited resources. Or details of external support agencies that might be able to provide advice. I've already tried HomeStart and they don't have anyone available to help. I sometimes get to the point of thinking he would be better off being adopted than stuck here with me being useless all day...😢

EstherMumsnet (MNHQ) Mon 08-Jul-19 20:41:49

Bumping this for you OP. You might find that you get more responses if you post this in one of our areas with more traffic such as Chat

AnotherEmma Mon 08-Jul-19 20:44:35

Are you claiming PIP?
Have you checked whether your family is entitled to any means-tested benefits?
Have you had a care assessment?

thewayoftheplatypus Mon 08-Jul-19 20:56:37

Do you ever have good days? I have a chronic pain condition that causes dehabilitating fatigue sometimes, but have as many good days as bad at this point.

From a practical point of view, I find on my good days when I cook I make double (sometimes triple) then freeze in portions. It’s as easy to throw a portion of spaghetti bolognaise in the microwave as it is to grab crisps/crackers. At least that way he is getting a decent meal. And buy a tonne of fruit and set it in a bowl on the table- that way he can help himself but he is unlikely to get greedy and eat it all in one sitting like kids do with sweets/chocolate!

My son loves playing doctors with me when I’m laying on the sofa (minimal effort required, just have to occasionally say my ankle/tummy/whatever hurts). If you can’t read to him gave him access to a big pile of books and ask him to tell you a story. Good for the imagination.

Do you have an amazon dot? My son loves ours. We installed the Lego challenge app. She gives you a Lego challenge when you ask for one (from the comfort of your chair) such a ‘build a car, make an animal, how tall a tower can you build, and so on and so on. You can watch them build whilst laying down and they will be actively engaged in a changing activity that you don’t have to think of yourself. I love this one when I’m exhausted after school because it’s educational and I have to do very little other than praise their creations.

Also there’s nothing wrong for him to learn to play alone- that’s a useful skill. You’re doing your best and you care- that’s already more than so many kids have. Be kind to yourself and good luck x

lululatetotheparty Sat 27-Jul-19 11:48:37

I really feel for you. I have have two chronic issues which leave me very fatigued and I struggle even though I am very mobile and can cook etc.

What is the nursery provision like where you live? Can you find a funded place now due to your circumstances? It's great that you have a child minder (I do and really need the down time when my DC are with them) too. One other thing I do is to pay friends teenage children to come and play with mine/take them to the park when it gets too much.

Regards food etc. could your partner manage to batch cook some easy recipes which you could just microwave? When I have the energy I do this and it is a lifesaver when I can't manage as well. The good news is that once your DC starts school they will get a good meal at lunch.

There are lots of educational apps etc. which might feel some time and make you feel better about the screen use etc. I also played a lot of games where I have to lie down with mine... so like a PP lots of doctors, sleeping beauty etc.

It is an awful situation to be in and very lonely as until you have experienced chronic illness it can be very hard to understand.

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