Can you think of any ways I can rest better?

[WhenTirednessWins]

Single parent with MS and two delightful ND children living with me.
o get serious neuro fatigue which makes my sumptoms worse.

being partly self funding and topped Up with benefits, I can’t better myself financially and only having one way is limiting.

but I’m happy and I love my life.

I just find my ms symptoms are worsening because I am living so tired People recognise I can’t put it on my ND children who struggle as it is, but I wondered if you have any clever ideas.

i Jane a tiny house with a tiny 2.5 drawer fridge-freexer so can’t batch cook. Both children like different foods other thank takeaway, but we can’t afford to live off takeaways and it would be unhealthy.

im off to bed in minute as I am struggling to see straight and can feel my heart is pounding with exhaustion (again). I’m stable cadio vascularly - I know it’s plain old fashioned exhaustion.

I suppose I wondered if there are any magical hacks to make life easier that I might have missed.

Firstly, while recognising you have limited space & money, I wonder whether you'd be able to squeeze in a counter top freezer somewhere? If so then see if you can find one secondhand which would mean you can do some batch cooking.

There are lots of things like ordering regular shopping on repeat subscription which can remove some cognitive burden.

But for neurofatigue, most experts recommend meditation, mindfulness and breath work- relaxation exercises basically. Done daily for even 10 minutes. I'm not sure how much it helps but apparently even sleep doesn't count as true rest and these relaxation exercises do. .

There are apps and podcasts like insight timer, womens meditation network and one deep breath that are free and we're recommended to me.

It's shit, I'm sorry- you've a lot to deal with

Do you have a support network, whether thats family/friends/professionals?

It sounds like you're working part time, are there any adjustments there that could help?

What's the situation with your children - how old are, they are they in school?

Ask your GP to refer you to your local neuro rehab service for fatigue management advice, they will have lots of helpful suggestions and can work with you to tailor it to your situation.

I feel decision fatigue and silent to do lists are major one for me. Decision fatigue over meal planning is prob the worst, the silent to do list is things like clutter silently nagging you to declutter/ post that letter/I must get around to fixing that damaged skirting. Even things like plants that need watered, trimmed repotted, pest control. You end up feeling you can't relax until everything is done. I had loads of lovely pots in the garden one year but couldn't relax out there because they were pretty high maintenance. (Learnt a lot about how to make it easier but ultimately decided I'm not doing any this year!)

All our clothes can be tumble dried except some school clothes we have no choice over. I don't always use it but getting that "loop" (gather, wash, dry, put away,) closed quickly is important or it feels like a job needing done for 2 days rather than all done in under 3 hours.

I have a small freezer too but due to food intolerances etc I batch cook and store in little 190ml pots that are a perfect single serving for a kid (Tesco klipfresh190ml 4 pack) If it's a meal we all eat then I freeze it flat in a sturdy freezer bag and about 3 would take up the same space as a pizza box. Just need to reheat it and add microwave rice or pasta etc.
Even taking away the planning of meals on a daily basis feels like a relief for my energy levels.

Thank you - I literally don’t have anywhere to put even a toaster at the moment. I’d have to put a freezer in my bedroom but simply don’t have space for even that.

but the mindfulness side of things makes sense. If I’m dealing with the underlying stress of life then that’s only going to help across the board. I hadn’t heard of it helping neurofatigue specifically but I’ll give it a go, thanks

I actually had to be medically retired which is where I partially self-find. My children are in school but because of their ND issues, I’m their helper rather than the other way around. I have a hospital team who offered to send me on a course but there’s a long waiting list.

They referred me to various helps like OT, physio, fatigue management course. But there’s a long wait for many of these, so I thought I’d try to be proactive while I wait

Do you sleep when you're in bed, trying to sleep?

I’m exactly the same - food preparation is a killer for me, even if I use my stool while I prepare it. It’s not just the struggle to prepare a dinner but like you say, thinking about what to cook.
I try to keep a menu plan but often forget to shop for it and so have to move on to the next item until I find something that’s in the house. Id love to employ a chef!

Yes, and wake so disoriented I literally don’t know where I am!

Are you eligible for any help in the home?
my friend is a carer but she looks after younger adults with disabilities aswell as elderly clients. She’s self employed and is paid for by a mix of funded and self paying clients and she helps a lady with MS she’s only in her 30’s and is a single Mum (I know her she’s a school mum and a friend, i told her about my other friend) and she does lots of meal prepping and helping her shop etc and sorting stuff out to make it easier etc… would you benefit from someone like this?

Do you happen to know how much your friend charges?

she sounds like the kind of person I need

@WhenTirednessWins

I had a stroke last year & need more Neuro rest as well.

I now live alone (which is obviously easier than also having 2 kids to look after!).

I find 2 things help, the main one being online food shopping (Tesco). & 'doing dishes daily' (Dana K White). If I let them get out of hand everything comes tumbling down.

I don't have the space, ability physically or desire to batch cook, for the freezer, but I do sometimes (depending on what I'm making) do enough for 2 nights. other nights I eat a lot of raw veg (again I don't have children here , so it's easier).

I don't know of any ways to get Neuro rest & if anyone wangs on about 'spoons' I'm
likely to attack them with one!

Xx

@StrokeUnwantedLifeEvent
i think it’s £20-25 an hour
ive no idea how funding works tho but if you speak to your local CAB they should be able to help advise on what you can claim or get funding for.

Are you taking any medication for your MS , such as baclofen or another anti spasmodic? I find my medication drains me depending on when I take it.

Changing your medication timing to later in the day or asking if you are a candidate for Botox rather than baclofen may be an idea to manage your tiredness.

I find that routine and simplicity works best for me - as otherwise things build up. Therefore, minimal lifestyle with no clutter - so there is less to sort out.

I am in the position of no dependants so I just skip meals as I am always too tired to cook but appreciate that isn't an option for you unless the DC are old enough and capable to cook a set number of meal options?

Thanks.

I will check again, but I don't think I qualify for any funding. I get some pip & a little ESA, but they're already going towards bills & food 🙇🏻‍♀️.

I know this isn't very PC, but as I'd be at home I'd like someone I could have an easy conversation with, so comfortably conversational English speaking (as my other languages aren't up to a relaxed conversation standard & I'm too neuro exhausted to deal with that) .

& someone that wants to help practically rather than just clean. I don't need 'personal care' but someone who'd be happy to just do small jobs I find very difficult these days & would relate to me on an adult to adult level rather than as a 'carer'.