Letting support workers into your life as a Disabled/Ill person is challenging. Not only are you asking them to do tasks you would usually do for yourself, you are inviting complete strangers to your home to view you at your most vulnerable.
What if you don’t get along? How do I employ someone? What if they’re set in their ways, and don’t want to adapt to my circumstances? What if their profile on HireUp talks about how they think children with disabilities are a blessing from God who inspire them to get out of bed every day?
That’s not even mentioning that with ME/CFS, being around people and stimulation in general is my kryptonite?*
Since mum’s circumstances have changed so dramatically due to a new diagnosis, we now have 4 support workers (or PAs) come to us a week, plus garden/yard maintenance. We are lucky to have gathered such an understanding team around us, but it took so much time and energy to accomplish. I’m still not quite comfortable with having new people in my space, and this new life.
*Hence the title of this post: am I so sick that I can’t do things for myself, but can’t stand having people around doing them for me either?