Aids and other helpful things!

  • Your power chair with the reclining feature sounds brilliant @river. I use a mobility scooter and the sitting up straight for too long is what fatigues me the most. In saying that, I couldn't live without it though. It's not a perfect solution but it does enable me to get out of the house for a short while. Even a half hour scoot around the block is better than nothing. I like the autonomy of a mobility scooter rather than someone pushing me in a wheelchair, but I do use both. Might need to do some research into powerchairs!!!!

    I find noise cancelling headphones are a great way to calm my nervous system, so those are a must.

  • Community Moderator

    Terrific thread, @river! I love all the tips here.

    My little one to add: satin pillowslips.

    I’m mostly bedbound, so my head is resting on pillowslips most of the day. I also have long hair (because I can’t get it cut often). The biggest problem for me with managing my hair has been knots. I can only shower once a week, so the knots really build up, and wear me out trying to brush them out. And brushing my hair every day to reduce the build up isn’t really an option either.

    A friend suggested using satin pillowslips (silk would be better, but costly), and even bought me one to try. I was so sceptical, and thought it was an old-wives tale that they would reduce knots. I was blown away that it actually worked!

    I’ve now bought a bunch of them, and sound very Princess- like 👸 when I say that I only sleep on satin pillowslips (🙄) but they have reduced the knots in my hair so much, and aren’t expensive.

  • @river said in Aids and other helpful things!:


    I have dropped my phone on my face so many times! I hadn't heard of popsockets!!!

  • @Daffy_Dave that sounds like an excellent setup. I'm trying to set myself up for work from home and it's a process. I have my dad's old recliner, but it's designed for someone resting all the time, not using a computer. I have a laptop, and I ended up getting a cheap laptop tray from Officeworks then rolling up and taping a foam roll so that my wrists rest on that and the laptop stays put rather than sliding down my lap all the time....I work semi reclined with a big foal roll under my legs to keep blood flow to the old brain going. I find though if I try and make any supports permanent they get uncomfortable after a time and I end up shifting them around, so I have lots of pillows etc to be able to shift position.

  • @Simone_Em_Aus I'm going to have to try this now! Where would you recommend getting them?
    I shaved my head recently so I don't have this problem so much anymore but I have incredibly thick, wiry, gravity-defying hair and I can't wash it often for the same reason as you. Anyway I feel like satin would just feel so much nicer against the skin.

  • Community Moderator

    @river I got mine from Adairs (they were on special, plus my mum has a loyalty card, so I got them cheap). The one my friend bought me was from Spotlight. I can’t tell the difference, TBH.

    Spotlight has a sale right now - $6! For $6, I reckon it’s worth a try. I don’t have the same sort of hair that you do, so I don’t know how well it will work for you, but the satin pillowslip definitely feels lovely against the skin. Makes being in bed just a little nicer. 😊

    I don’t know if this is the one my friend bought me, but just know she got it from Spotty.

  • @Simone_Em_Aus _ I have silk pillowcases, not just for my hair but because my face has become really sensitive . Mine are from Canningvale... they often have sales; I wouldn’t pay full price

  • I love my recliner! I have a table that swings over and is height adjustable - its fantastic! I also have a two tier tray thingy from IKEA, next to my chair.

    My table is like this, but without the high pole to help you get up:

    The tray is no longer available, but IKEA have a good range of tray tables and trolleys and they now deliver.

  • I also have an iPad stand that I bought from Amazon - I use it when I’m in bed. It’s great for when I’m lying on my side - usual position - Not so great for lying on your back as its not high enough for me.

    It’s this one:

  • @river I use water bottles from Rebel Sport - they are Nike brand. The water only comes out if you suck... so I can drink when lying flat without spillages, Look for them on special!

  • I am hoping to get a powered wheelchair through NDIS. We hired one on holiday a couple of years ago... I cannot describe the feeling of freedom and independence!!

    I also use noise cancelling headphones.

    I have a couple of USB re-chargeable fans from Kmart... they work really well.

    They are these ones:

  • Community Moderator

    @Blubenny Ooh, thanks for the tip! 😍

  • This might sound kind of, well, obvious, but a few years ago I had a brainwave. Sunglasses. I’ve always been really sensitive to light (comes with being ASD as well) but it got so much worse with ME. Going outside felt like shining a torch in my eyes. I avoided sunglasses for years, because I always felt the arms pressed against my temple and caused headaches. But I invested in some that fit right and it’s been worth it. I no longer have to spend energy just existing when I go outside, I never realised what a difference it made before. Now I never leave the house without them, and have several pairs.

    @Blubenny I found a triangular cushion at my local cheap shop that appears to be designed for iPads and tablets. It’s super convenient because then I can prop it up at most angles. Obviously nowhere near as fancy as yours, and I can’t make it go upside down, but I can move it with me on the occasions I go to the lounge room as it is super light.

    Also, I wish you the best of luck with the NDIS. I’ve found they’re not as helpful as I’d hoped, but that could be because they only seem capable of recognising my ASD and not the ME/CFS... which easily negatively affects my life twice as much.

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