WHAT AM I DOING NOW?
I currently spend most of my time in bed at my boyfriend’s flat. Calm down, nothing remotely sexy about it! I’m being cared for here because I have Myalgic Encephalomyelitis. For more info on this condition visit www.meaction.net. also www.actionforme.org.uk. There are millions like me, who are missing from their previously active daily lives. 25% of us are bed-bound. I wasn't always like this. I was an active and adventurous surfer and Visual Arts Educator until I developed M.E.
I’m not just lying around watching Netflix and snaffling biscuits either (I couldn’t even if I wanted to due to my symptoms). I’m raising awareness via social media about M.E. and have begun a healing hearts art project via Instagram @jojosmojoco. I’m concerned about the trauma this Pandemic is causing and how it’s making peoples’ M.E. symptoms even worse. I'm also concerned about the people who have found themselves chronically ill as a result of contracting COVID19.
WHAT DO I WANT TO DO ?
I can't do a lot from my bed but I CAN share my mojo, creativity, experience and skills as a chronically ill ex-art teacher and mindful meditator, as well as my humour. Not just during the lockdown, not just during the pandemic. Long term. My aim is to reach out via YouTube vlogging ASAP to reduce the suffering caused by marginalisation and isolation and to keep advocating for the chronically ill. The content will be aimed at people who are bed bound and housebound and include things like
- Art as therapy tutorials
- Mindfulness meditation activities
- Tips and resources for managing symptoms and accessing support
- Having a good laugh at my expense!
There is very little research into and no known cure for M.E. I am determined to help change this and I believe my YouTube channel could also help raise awareness and funding for research and treatment. My goal is aligned with that of the #MEaction movement - one day all people with M.E./Chronic Fatigue Syndrome will have health care equality, which means access to compassionate and effective care. Any amount I can raise above the £3000 will be donated directly to #MEaction.
STUFF I NEED TO BUY
Since my energy is so limited I need to make this as easy as possible to achieve. I am asking for help to buy the necessary tech equipment to get this project up and running from my bed and hopefully, when I recover from this latest severe flare up of symptoms, in my own home.
I need to buy iPad Pro with keyboard and pencil so that I can begin to create and share content, totalling £1929.00. I also need suitable lighting and HD camcorder and microphone system for creating art tutorials when I am able to sit up at my art table, which I estimate will cost around £850. To try to minimise the pain in my neck, back and shoulders while doing artwork I need to buy a suitable studio chair at around £150. So, all in all I think the set-up is going to cost me around £3000.
Times are tough and money is tight so any amount you can spare will be gratefully received and help me to share more mojo.