Living with ME while doing her damndest to embrace student life hasn’t stopped Pippa Stacey ‘accidentally’ founding a project which is offering a bag of sunshine rays to those in need. Bravo that lass.
Acquiring an incurable illness in your early twenties is 100 per cent not ideal. Over the past two years, I’ve gone from being a healthy, active student loving life to becoming a medical mystery.
I first became ill with ME at the age of 15, but in the past two years I have suffered a dramatic decrease in functioning, meaning my ME is now severe enough to significantly affect my quality of life. I have been ill for almost six years, and as of now there is no prognosis, targeted treatment or cure for my condition, the symptoms of which include debilitating pain and fatigue, cognitive impairment, immune system abnormalities, sleep difficulties and frequent sensory overload.
Explaining to people that no, it wasn’t a tragic accident and no, it isn’t amazing to stay in bed all day and no, I’m not on my Make-A-Wish Foundation wish every time I leave the house consumes a lot of energy. Meanwhile attempting to conduct trips out pushed in my wheelchair with housemates in heels, on cobbles, after cocktails, has been a battle in its own right, as has learning how to swallow medication while wearing red lipstick.
“Originally I saw the project as just a fun way of raising money. To hear the extent that the kits actually help people has been a whole other story.”
I’ve been so occupied with trying to keep up with student life while being disabled that it didn’t occur to me until recently that I’d somehow accidentally founded a non-profit movement in the process.
Spoonie Survival Kits began as a little bit of fundraising I decided to do during my university holidays. ‘Spoonie’ being the slang word for a chronic illness sufferer, the kits are little bags of happiness that aim to act as a pick-me-up on harder days.
They contain crafts to do in bed, treats to eat and things to wear. They also include symbolic items to remind sufferers they’re not alone and somebody cares.
I made 20 of these kits originally and sold them online. I enjoyed doing it and was glad to raise a bit of money, but definitely wasn’t prepared for what happened next. People began asking when the next kits were coming, requesting kits for friends and asking what they could do to help. That was 10 months ago and the kits have been constantly in demand ever since.
“When I first got ill, I definitely wouldn’t have believed it if someone told me I’d end up running a non-profit business from my bed.”
This demand led to more and more kits being made, volunteers being hired, an Etsy shop and online community being established, and my little bit of fundraising becoming a non-profit project. The kits are still fundamentally funded by me, but also supported by kind donations from supporters and small businesses. All the money made from sales goes straight back into good causes: 25 per cent is used to sustain the project and 75 per cent goes to a chronic illness charity, our current charity being Action for M.E.
The way things stand now, the project is achieving three things. We’re raising money for worthy causes, we’re helping to make sufferers smile and remind them they are more than their illness, and we’re now providing accessible volunteering opportunities too.
Many people with chronic illnesses may not be physically able to participate in paid employment, but they still want to make a meaningful difference to the world. To accommodate this, I’ve recruited fabulous volunteers with disabilities for web design, illustration and administration, and also offer accessible, time pressure-free opportunities for crafty people with disabilities who want to make items for the kits.
Originally I saw the project as just a fun way of raising money. To hear the extent that the kits actually help people has been a whole other story.
A recent recipient, the lovely Abi, says: “My kit has helped me through a bad couple of weeks. When you’re ill the smallest things make you smile. I absolutely love getting post, and it’s something I actually look forward to every day. I am currently getting through a flare and receiving the kit really cheered me up”.
Another kit beneficiary, Rosie says: “It was the highlight of my week, when the kit arrived. Still, every time I use one of the items, I just can’t help but smile.”
The project is continuing to grow and we want to reach as many people as possible and help to brighten their days. We’ve reached people with long-term conditions in 51 countries so far, and each time we put more kits online, they sell out within hours. It’s a very big commitment, especially as I’m currently in the final year of my degree and have aspirations for the future on top of my fluctuating health, but it’s so worth it.
The kits take a lot of time and energy to create, which also complicates things. I now have debilitating pain and fatigue that has to be managed appropriately and can slow me down, but my bigger concern is our finances.
“Attempting to conduct trips out pushed in my wheelchair with housemates in heels, on cobbles, after cocktails, has been a battle in its own right, as has learning how to swallow medication whilst wearing red lipstick.”
We have no funding for the long-term as we’re not eligible for grants or start-up bursaries, and due to the nature of my illness I cannot fundraise as much as I would like. We rely on the kindness of others and massively appreciate money donations, fundraising on our behalf and crafty people making items for the kits.
We would love to have sponsorship from businesses one day, but for now I truly am grateful for the individual support we receive that helps us to keep things up and running.
When I first got ill, I definitely wouldn’t have believed it if someone told me I’d end up running a non-profit business from my bed.
I’m not one of those people to preach that ‘everything happens for a reason’ or say ‘I’m so glad I got this illness’, but the fact that something so good has emerged from something so awful really is humbling.
Spoonie Survival Kits has so much more to give and if you feel you could help in any way at all, please get in touch so we can have a chat!3511 Views