Last reply 7 months ago
Parenting advice needed

… Specifically toddlers. Specifically the terrible twos! Does anyone out there have any advice for coping with this difficult stage as a parent with MS? I am recently diagnosed and have had 4 relapses in the last year, so needless to say I’m not on top form. My daughter is VERY high energy, which I love, but she’s too young to understand that I can’t do some things and so she understandably gets very frustrated. It’s really practical advice I’m after, for example how do you cope with fatigue when youre up a lot in the night, and how do you communicate to a 2 year old that you can’t run around and carry them the same way that you used to?? I really want to get back to enjoying family life not just surviving. So im hoping there’s some super mums and dads out there who can give me some pointers! Thank you

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7 months ago

Hello @regj, it might not seem like it at the moment, but the being up at night thing really will pass. When the tiredness seems endless it’s impossible to think that things will ever change, but they will. Is there any one who could take your daughter for a weekly sleepover? Do you go swimming together? That would be a really good way to experience the closeness and fun, but have the support of the water. Are you working at the moment? Being an OT you have some really transfereable skills, especially if you are in a military community and could trade your exercise/ physio advice for some babysitting. Good luck! X

7 months ago

Can you put her in a part day program a few days a week? It will give her the opportunity to socialize and you some down time. I have a lot of toys around the house and a fenced in back yard with swing set, water table, and sand box so my kids can play by themselves while I watch. I also have a few go-to places where they can play in a contained area while I sit. What those will be for you really depends on where you live. It could be a Park, museum, indoor play area, or library. Also, play dates with other moms and kids may help. You can sit with the moms while the kids play together.

Sometimes we eat a picnic in the back yard so they eat and play while i lay on the blanket. My kids love bubble baths so I’ll fill up the bathtub and let them play in there with their toys. You can also just fill a small bowl with water and soap. Puzzles, reading, and drawing requires little effort. You can put on a YouTube video of kids dancing or doing yoga and your little one can dance along. If things are really bad I lay on the floor and let them bounce and climb on me. Play doh can eat up hours of fun.

Kids are exhausting but those are just some ideas. Good luck!

7 months ago

@regj God, that stage is hard, isn’t it? I found a trampoline really helpful for burning off a bit of their energy. Small, indoor one in our case as garden not big enough. And a ‘disco’; lights off, music on, a disco bath light that we bought and maybe a few glo-sticks if I was feeling generous. Child dances around like a loon, you sit down and wave your arms around every now and then! Also, playing ‘puppies’. You sit down and throw the ball, child runs/crawls around to fetch it.

The only way I found to deal with the fatigue was lots of sit-down breaks and chocolate hobnobs (not helpful 😀). Any extra rest will help.

As for explaining, I just said i had ‘sleepy legs’. The not understanding/frustration is a toddler thing though. They don’t have the capacity at that age to understand anyone’s needs but their own. ‘All will and no rationality’ as my mum would say. So no matter how you well you explain, you’ll probably still get a tantrum!

7 months ago

As the name suggests I’m a grandma but looked after my now 14 yr old grandaughter a huge amount when she was a baby and toddler. Even then when I was ‘on my feet’ I would still get very tired very quickly so a couple of my strategies were, all my small stud earrings in a plastic bottle, she would empty them out onto my bedside table and spend hours sorting them out into pairs! Nanny meanwhile lay on the bed watched and commented, great way to lie down on the job. Reading, cuddled up on the sofa we started when she was very small and it worked because I’m a big reader myself (did English Lit at Uni) and having taught her her letters she was a very early reader and by 6 or 7 she was reading the bedtime book to me at night taking it in turns to read a page. I also taught her to swim, we had great fun at the baths, nanny lying back in the water relaxing and Charlotte splashing around enjoying herself. So you can keep a toddler amused even as an older woman with ms. There’s lots for you to try, have fun😍

7 months ago


Mine is 16. Different challenges!

Do you have anyone else to help you? Partner, family nearby, that sort of thing?

Two year olds don’t really have the ability to contextualise and empathise as much as older kids, so I appreciate it can’t be explained easily to them that you need a break.

If your daughter has a routine then you may have to plan your rest around that. Nap together in the afternoon?

Really tough to say without knowing how much help you can access from friends/family. If I had them to hand I’d try to explore how they can help in a structured way so everyone knows what to expect and when. Good for your little girl and good for you.

Best of luck.

7 months ago

Thank you all!!

@vixen @mamawals @imbarca @grandma @dominics, I cried reading all your replies it is just such a relief to hear other people have gone through this and can talk confidently and positively – it’s motivated me to get back on top of things and start being the mum I want to be again. I’ve tried some of the activities already, thank you for taking the time to share guys it has really helped me out.

It’s also a good point about arranging more childcare. My husband is at sea but I am surrounded by family and friends who want to help me. I realise that maybe I have been reluctant to let them for fear of being a burden, but maybe that’s silly because they want to.

I’m going to stop worrying about how hard it is and start focusing on the good stuff (like chocolate hobnobs, haha @imbarca).

Thanks for the support everyone xxx

7 months ago

Dear @redj
I was diagnosed when my children were one and three . But things became difficult when they were six and eight I was then unable to walk and I used a Rollator

I spent two years dragging myself . Had to live my life again I would be in a mobility scooter earlier and my children with the bike I see yours are smaller you can always go with a scooter and them on a bike or a lid if too tiring to walk I know is difficult but makes things super easy then

7 months ago

*puts on camo made of teddy bears* Bear grills the feck outta yer life lass use your surroundings and parent the sh1t outta life. In early days of diagnosis I used baby chairs to sit on round the house etc…. went through a few of em mind 😂 you can get dog collar type reigns for the kids too for out and about so you don’t ya e to crawl after the little squirts, all sorts of stuff out there you can buy to make it all easyer. Don’t give up plod on lass just need the belief that you can and will eventually there’s nowt thee CANT do it just takes a bit longer.

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