A noobs guide to potential equipment/adaptations - part 1

I was talking to someone the other day about how there's a prevailing attitude within parts of the chronic illness community of cure over adaptation.  This seems to be quite prevalent in those illnesses for which campaigning centres around 'cure' and/or those where 'recovery' is the socially expected outcome.  Don't get me wrong, I'd really like to get better but I'm trying to be realistic here.  


I've spent a long while feeling guilty about adapting my life rather than aiming to 'get better'. In reality my illness was very much progressive up to a point and now I can't tell if the progression has stopped, or just slowed down.  Either way, guilt does not help me with anything.

So...I thought instead of talking about how bad I feel and *insert internalised ablism here* etc etc, I thought I'd talk about some of the awesome adaptations I've made which have changed my life.  I think this blog would be way too long if I included everything so I'll attempt to make this in to a mini series of some sort.


I'd like to point out that I am both very lucky and very crafty in terms of the equipment and adaptations that I have.  Many of the items I own would not usually be prescribed for someone with my impairments.  However, that's not to say that they are not needed.  I wish it was much easier for others to gain the things they need.  However, as I said, I've also been quite crafty in terms of getting equipment so hopefully some of you may get some ideas on obtaining things.

Adjustable bed

Note: stock photo: I don't have granny carpet

This was one of those items that I initially felt very uncomfortable about having but that made such a massive difference to my life that I felt silly for ever doubting it once I started using it!  (This happens a lot!)

What is it: An electronically adjustable double bed with  massage function.  I use my own ikea memory foam mattress on top instead of that supplied.

How it helps: 

- Sitting up from a lying down position is either impossible or very very difficult for me so this helps me sit up and means I can get out of bed with minimal to no assistance unless very ill.
- One of my impairments is what I like to call the 'upside down woodlouse'. In layman's terms: once I'm on my back it's often very difficult to change position.  Being able to adjust the legs and back means I don't get uncomfortable lying in the same position.

Why I like it

- I like the fact it's a double. I can take advantage of being a single adult and take up way too much space/duvet.
- It doesn't look like a hospital bed.  It's designed for crips and lazy people alike.
- I spend a lot of time in bed and it's nice not having to lie completely flat to get the benefits of being in bed.

- It's really freaking comfy.

Disadvantages

- It's a bit old and creaky.
- Anyone in bed with me needs to put up with whatever bizarre position I need to be in.
- Unlike hospital beds you can't adjust the height of the bed which makes changing clothes/pads from a lying position more physically demanding for a PA/carer/nurse.
- The massage function is more like a giant, loud vibrator.

How I got it:
- The community OT prescribed me a pillow lifter to help me sit up in bed but I found it far too uncomfortable.  Instead she converted this to a 'direct payment'.  This meant I was given money to buy something which fitted under the (intentionally broad) description of "a piece of equipment to rise from lying to sitting in bed".  A bit of crafty ebaying and I had myself a double adjustable bed costing less than the direct payment.