Read more“I want to ensure that other People with lived experience are valued and rightly compensated for their unique and valuable insights. So often many assume my input would be voluntary, but I try hard to advocate and educate potential partners of the importance of remuneration. It acknowledges the time, effort, and expertise contributed by people with lived experience. For me, this recognition not only ensures that I can continue to pay for the ongoing expenses but because I feel more valued, I want to contribute more!”
Emma Gee.
When “Just Rest” Hurts More Than Moving
I am so tired of hearing, “Just rest” or “Your body is telling you to slow down.” I know people mean well but what if my body is actually screaming because I’ve been staying too still? For me, rest isn’t restorative and stillness isn’t neutral. If I don’t move...Travelling Interstate for My Sister’s 50th — And Doing It With a Body That’s Eternally Exhausted
I knew when I bought my flight to Sydney for my sister’s 50th that it would be an exhausting experience. Since my stroke, the debilitating fatigue I experience is only amplified by travel. Not only the airport lines and airplane, but the packing, planning and...Read moreI was adamant about still having some control over my new home. I refused to listen to therapists’ recommendations that I purchase an electric scooter to replace the rusty manual silver car that I no longer could drive, or modify my bathroom and install rails around my new home. In my state of denial I continued to stubbornly believe that putting in ugly disabled equipment was a waste of money and unnecessary when I was on my way to a 100 per cent recovery. Accepting any modifications to my home symbolised permanency and disability confinement, and suppressed any chance of hope. Those around me would assume I was no longer improving. I don’t think my therapists understood my state of mind, and often took my refusals personally. Of course their suggestions were right and in fact did seed the ideas. For example, after a while of getting around in cabs and trams and depending on lifts, I decided that a funky- looking scooter would improve my independence.