tuross head beach

Yep…my house is big mess. I hate it. But here’s the thing…if you want to help a disabled person, someone crippled by severe daily pain, don’t offer advice on how to do things better.

I do things the way I do for a reason. If you lived in horrible pain, you’d develop strange ways as well. You don’t understand, so don’t make me feel worse by explaining how to do it better. Because then I have to explain to you why I can’t do it your way. And this makes me feel useless and incompetent.

Also, if I get up and do a task, don’t tell me not to. I NEED to. I can’t sit around and let someone else do everything and you are infantilising me when you tell me to go sit down. Again, you make me feel useless and incompetent. I know what I can and can’t do. And I need to do what I can. I need to keep trying. I’m physically impaired, not mentally.

And remember, this is my home. Don’t rearrange my cutlery drawer or put things in ‘better’ places. Things belong where they belong for a reason, maybe because I can’t lift them from down low, or reach up high and manage their weight. There are reasons for everything that you find odd, don’t ask, just accept there’s a reason, and do it my way, or don’t do it at all. If you want to help, do it my way.

In short, don’t think you know better.  And don’t think you can do it better.  Of course you can do it better!  You’re not disabled by pain and weak joints. Do things my way, cos that’s what I’m paying you for. And once you’ve left and I can’t reach the toaster, or lift the frying pain, what do I do then?  Have you helped?  Think it through.  Think about me, not you.

Allow me to keep my dignity. It took me many tries to find a carer who understands this.



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