We are always inspired by those with M.E. who help make our work possible. Pippa Stacey wanted to create something to brighten the day of people living with chronic illness, and has achieved just that by selling her Spoonie Survival Kits online - and growing it into a business, all from bed. If you feel inspired by her story, could you take on your own M.E. marathon? (Running absolutely not required.)
Spoonie Survival Kits is an idea that arose from my own experiences of M.E. I wanted to create little bags of happiness that chronic illness sufferers could turn to on their tougher days and be reminded that they’re not alone, that they CAN do this.
Each kit contains things to do, make and wear,as well as little symbolic items to represent the fight of a chronic illness sufferer.
Spoonie Survival Kits was never intended to be anything more than a fun bit of charity work during my university break, but after selling the first few kits and seeing the response on social media, we found that they were in demand.
The project has become a non-profit organisation in its own right. The kits are funded from kind donations then sold online, with 25% of sales money going towards sustaining the project and the rest to a chronic illness charity.
We’re now in a position to take on volunteers and offer flexible, chronic illness-friendly volunteering opportunities for anybody with a disability or illness who wants to get involved (contact details are available at the bottom of the page if you’d like to volunteer).
Action for M.E was the very first charity I chose to fundraise for. Their emphasis on practical support for people with M.E. and supporting research for targeted treatment and a cure really appealed to me, and I wanted to contribute towards the amazing work they do.
We’re very grateful to have raised £1,000 for their work so far, and hopefully in doing so have raised the profile of M.E. too.
Sustaining the project on top of my condition is very difficult, even with the help of my awesome volunteers, and having an uncooperative body means there are some days where it just isn’t possible to get things done.
We put out a disclaimer that there may be a large time gap between somebody ordering a kit and receiving it, but luckily most kit recipients are very understanding and wait patiently.
No matter what kind of fundraising you choose to do, my advice would be to pace yourself, know your limitations and ask for help when you need it. It’s amazing being able to fundraise, but something I’ve learnt (in the hardest way!) is that your health should still come first: it’s better to consistently work at a safe level than push too hard and make yourself too poorly to do anything at all.
Fundraising with M.E isn’t without its challenges, but the positive response the project has received has been just amazing.
We sold the very first kit just over a year ago and since then, we’ve raised more than £2,000 for various charities, sent out over 400 orders and reached chronic illness sufferers in 68 different countries. Something I still haven’t quite got my head around, especially since most of our work is carried out from my bed!
Fundraising on top of a debilitating illness can be so difficult, but if you have an idea and the means to carry it out, I really advise you to give it a go. You never know just how huge it could become!