Next to my bed you can see a tank of water to wash my hands.

There are also flasks of hot water and snacks.

Washing my hands or feeding myself anything were activities that needed to be paced out.

I needed everything to be within reach for the times when a carer was late or didn't show up. When that happened, I had to try to contact the care agency office or a neighbour for help. I could not speak on the phone or get in the wheelchair without the symptoms worsening, so it had a serious effect on my health when a carer was late, and they were often late.

I had reactive hypoglycemia so the symptoms got worse if I did not eat something every 2 or 3 hours.

I was restricted in how much I could drink, as it was a very significant movement for me to reach the commode.

Unfortunately, in this room, the wheelchair could not be placed nearer the bed. This meant I could get in it even less easily and often than otherwise.

You can see one here on the wall.

I reacted to the everyday perfumed products that the carers used, such as shampoo and deoderant. It would cause my muscles to go into a kind of paralysis and my brain to have difficulty in sending messages to instruct my body to move.

If the chemicals in the products were strong for me, it was hard for me to open and close my mouth to be fed. It was a constant battle to get and keep carers who wore products that allowed me to be able to eat.