Why I created Spoonie-Life-Hacks.
When my health suddenly declined and I became ‘disabled’, I went through one of the hardest phases of my life. You expect your doctors to help you here. They wanted to ‘fix’ me and make me better, but none of them would help me adjust to this new way of life. I had to learn the rules of this new world on my own.
One day I bumped into a woman while waiting for a bus. We were both in wheelchairs so she asked me why I need mine. We both had EDS so she suggested I join some support groups on facebook. At first I didn’t think it would help much. One day facebook recommended one to me that this woman had suggested. I joined it and my life changed.
Over 90% of my knowledge of my condition is thanks to that group. Because my condition does so much to the whole body, doctors prioritise on the worst things and often don’t bother to learn about a lot of the symptoms and issues. In this group of thousands, if one person knows and shares their knowledge, we now all know and can research it ourselves.
Anyone who has been in that group for long enough has more knowledge of our condition than most doctors. So we discuss how to live with our set-backs. There are the default ways that our doctors suggest but as I said, doctors only focus on a few of our struggles. Here’s my inspiration. If one person figures out a new way to make a problem more manageable and posts it, thousands of people can now do it too.
Now imagine if out of every 50 people, just 1 person discovers/invents a new way to make our lives easier and shares it in a group of over 6,000 people. That’s 120 new ways to improve our life. 6,000 people now have 120 methods for better living with a disability.
This gave me an idea. What if I could form a group that focused on just our own inventive ways to better live with our health problems. Imagine how much we can achieve. Where people with any disability or condition could add their own solutions in exchange for many more. Imagine how many ideas there could be all in one place.
This is what I want for spoonie life hack. This is why I ask you all to submit your ideas, no matter how small. If we work together we can all be so strong.