Dear carers

Dear carers,

If you don’t respond to my requests for you to change how you’re doing something and then continue to do it, it’s going to feel like you are not respecting my wishes and experience.  If you never respond to me then I don’t know if you haven’t heard me, are ignoring me or have heard and will change things nest time.  I’m then waiting to see if you change it.  It makes me feel a bit tense.

In the same way that I wouldn’t want you leaning on my shoulder or wheelchair, please don’t lean on my bed.  It shakes when you let go and is painful but also has become a part of my personal space. I have a small grab rail on the side of my bed. It is mine, not yours. I need it, assume I might need it at any time. Communication is tiring for me and I also feel rude having to as you to move your hand!  There’s not enough space for both of us.  If my hand is on the grab rail, don’t put yours on there too.

Communicate with me if you want to adjust my clothing. I’m not a child whose school uniform you are inspecting. Don’t just pull my trouser legs and T-shirt down without saying anything.

Some things I request seem insignificant to you – I get that, but they’re not insignificant for me and it feels pretty vital for my physical and mental wellbeing that you respect them. Right now I feel like you’re treating me like the boy who cried wolf.  I know I ask you to change things a lot and I make pained noises a lot – but that’s because everything hurts, and your actions make a different as to how much pain and discomfort care tasks cost me.  I need to feel I still have bodily autonomy.

You might think I’m just being fussy and controlling but I’m just expressing my needs.  My condition is the driving force behind my requests and not general fussiness.

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