Someone recently found my blog by looking for “ehlers danlos can’t open jars” and I hope they found some help (try dycem jar and bottle openers). I wrote a post in 2014 (2014, can you believe it?!) with some tips for stuff which really helps me. Anyway, a lot has changed since then so I wanted to write an updated version.
If you find this helpful, do check out the 2014 post as it all still holds up.
- Tablet and tablet stand – these were included in my last post and I still love my tablet and use it so so often throughout the day. It’s my contact to the world. It’s my books and my storytellers. It’s my calendar. It’s my notebook. It’s my teacher. It’s my alarm clock. It’s my tv.
- Pillows – find pillows that work for you. I have two standard bed pillows and a, rather pricey but worth it, U shaped pillow. It’s filled with beans so it squishes and my shoulders have dislocated a lot less since I got it as they are now supported at night.
- Mattress raiser – I got mine through the local council. Basically it goes under your mattress and allows you to raise the head end of the bed like a profiling bed would using a remote. This makes it so much easier for me to get in and out of bed, more comfortable when I’m in bed but wanting to sit up and it’s easier for my carers to get me out. The combination of this plus my mattress topper means that I have king size sheets for my double bed. Much easier for my carers to get on and less likely to twang off in the night!
- Bed wedges – there are lots of different options, I have one which supports my knees and ankles
- Duvet raiser thingy which keeps the duvet off my feet (the weight of my not very heavy duvet is enough to hurt my ankles and dislocate my toes). I have my thingy attached to my bed using a strap which goes round the mattress and I have a blanket pegged over the top, round the sides and the end of the bed so my toesies don’t get chilly!
- Overbed table – I got mine for a bargain price of £3 at my local second hand furniture place. It gives me a place to put things like meds, my tablet etc so that they’re essentially in my bed but not going to fall prey to my tossing and turning. I have a tray on top of mine which has the advantage of making it look less clinical whilst the edges stop things falling off.
- Key safe – this means that my friends and carers can let themselves into my flat if they know the code to the key safe. In my old flat I kept my spare keys in a combination lock locked shed. It means I don’t have to get out of bed to let my carers in and it’s there in an emergency so other people can get into my flat.
- Cutlery – I can now only use my bent spoon to eat, anything else causes too much pain or is impossible. You may find spoons easier than using a knife and fork or maybe just need a thicker handle.
- Plastic crockery – this is lighter and obviously less breakable. I have some nice bits from Cath Kidston, paperchase and I got some in the BHS closing down sale.
- Cups and drinking accessories (what you don’t accessorise your drinking? how last season are you…?!)
- Trolley – this lets me move a lot of stuff from room to room at once, reducing the need for multiple trips as well as reducing risks of dropping things and lessening the pain in my hands
- Plug pulls – a little bit of plastic which attaches to your plugs to make them easier to pull out, genius!
- My pouch – I love my pouch. It holds my tablet, my money, my keys etc. And because it isn’t an actual bag, it squishes down beside me in the wheelchair so I can get to the important stuff.
- Hairbands – especially wide fabric ones and headscarves are perfect for bad hair days, weeks when you’ve not managed to wash it etc. And dry shampoo is also helpful here!
I’ve included links to help illustrate what I mean. I don’t get any money from the companies and obviously you should shop around and find what works for you. You may also be able to get some of these things through your local community equpiment service (in the UK at least).