Back rests, supportive chair cushions, wedge pillows,

Looking for advice on what people find the most easiest, cost effective and easily removable, light weight, bed accessories that can also be used in other areas of home

This is to have two desired effects:

1) perhaps to help Orthostatic Intolerance but also Orthostatic Hypotension (research does support the later)

2) reduce sacral-iliac pain that I have developed from sitting on a firm bed with a soft topper (designed to reduce pressure effects when sleeping/resting) and with removable triangular pillows for back support to do needlework which has worked well for many many years.

But now my aging back is not coping and aggravated by having a dog and having to pick up toys etc.

I am now finding it is aggravating my hips and can’t sit in a recliner for long. I can’t do needlework in my recliner due to the arm rests and buying expensive removable frames for this is impractical as I don’t have the space with all my other ME stuff at hand and the bed position in room which I am not prepared to sacrifice due to the view and careful positioning of various items to support wellbeing - electronic piano, tv, recliner, dresser etc.

The bed is of the highest quality and not keen on adjustable beds because they lack sacral support. But I could be wrong about this - any advice?

Most people who do needlework like cross-stitch, embroidery to high levels of execution require daylight lamps, magnification, tablet and floss container holders and use swing frames and accessories on a couch and I don’t have the finances to heat another room for the day and get this, as possibly in a few years I will not even be able to do needlework due to the level of concentration required.

I also have a plan to future proof the quality of my life by getting an internal/external electric wheelchair. So I have been thinking of getting a proper ergonomic cushion with inbuilt pelvic supports etc (used for many electric wheelchairs) and using that in bed and carrying that around so I can place it on high backed chairs when I am doing something at a table (eg. chopping and preparing food) to maintain good posture.

Has anyone found ergonomic cushions useful?

Then there is the bed wedge pillow, which could have advantages of being flipped and create useful slopping back rests.

Is it best to get some small ones or long ones?

What is the best angle for the bed rest to do things in bed, from other’s experience?

So many disability aids are heavy or not easily collapsible and designed for people who have carers.

Probably I need an Occupational Therapy consult - private ones are expensive here. Public OT’s, join a long cue, ME at bottom. Subsidy for disability aids - none. Physio also an option but also would need to go private.

I am going to get a picker-upper tool for things on the floor to minimise stretching to this area and doing the usual movements to maintain good back health (bend knees, don’t twist etc) and more resting horizontally….

Edited

 

I started doing needlework in bed a couple of months ago, and I've been surprised by how well it has been going

My hands and arms usually fall asleep very quickly when I'm using my mobile phone or e-reader, but I've actually been able to sew for long-ish stretches of time without significant discomfort.

I use a whole heap of regular pillows for support. I have a couple of microgranulate tubepillows as well, that I find super comfy and very useful -- they give excellent support, are very easy to shape and move around, and they are extremely lightweight.

Here's some more info about the tubepillows:
https://www.invitalis-shop.eu/en/3854858/kuschel-maxx-pillows/tubepillows-print/

I love my non-slip laptray too. Super useful
https://www.bosign.se/shop/list_products.php?cat=LAPTRAY

 

If it' s not out of your price range, I would highly recommend this adjustable electronic pillow raiser:
https://www.completecareshop.co.uk/...ter-pillows/electric-pillow-lifter?sku=M77040

i do art and craft from bed, and the fact it' s adjustable means it can adapt easily to different activities.
I also have sacral and pudendal pain, and recommend getting a foam wedge for under your knees, as it will take pressure off your lower back.

 

Thank you! are you stitching from a horizontal or sitting position?

I am presuming sitting (but know people who stitch while horizontal but that might likely have strong potential to produce PEM but I will probably end up doing this somehow if my cognition/eyesight holds up and I learn to slow down the process and not throw it down in frustration after having to unpick my mistakes but that’s the creative process.

Yes, I use medium microgranulate tube pillows between my legs while sleeping on side and under elbows for sleep positioning to prevent pressure problems. Then once I am sitting, I squish them into tablet holders one side, the other for some elbow support, floss containers wedged against wall on small pillows, to stop the dog messing with them or me knocking them so they don’t fly everywhere, more PEM… as one scrambles on the floor and then having to carefully put them back in order.

Not easy to get good quality and long lasting elastic material coverings in NZ and after much research had to import them from Australia. (cuddle buddies is the brand and has removable (unpick seam, wash then re-stitch) outer sleeve) https://cuddlebuddy.com.au

 

Thank you, @hellytheelephant, I have seen your creative projects here, so hoping I can adapt or change my art/design/craft for the future with assisted aids etc. so an automated back rest could be a good cost effective long term solution, rather than bed replacement.

I think I will need to get some professional advice, I have some pudendal nerve symptoms too..and likely aggravating my interstitial cystitis as well, so think it is time to get them sorted, rather than putting up with them due to the expense of private consults, and before I invest in spinal/pelvic support cushions!

 

Nearly horizontal 95% of the time, sitting maybe 5% of the time?

 

Have been researching this and found some useful sites:

https://amerisleep.com/blog/how-to-use-a-wedge-pillow/#what-is-a-wedge-pillow

https://www.sleepadvisor.org/how-to-use-a-wedge-pillow/

They advise not to use pillows with wedges, but I guess that is a personal thing, I am going to get some pillowcases made up for hygiene and improve longevity of my expensive wedges.

They are recommended by ME Clinicians if can’t afford an adjustable bed (as per papers around care of severe and very severe ME).

OI/OH/POTS not ME specific but the basic physiological principles are the same.

https://pubmed.ncbi.nlm.nih.gov/19015909/

 

Thank you so much for this! Now I want to try one too