Though I was only diagnosed in October 2014, my journey with M.E. began six years ago, when I was 15 years old. Between the ages of 15 and 19, my debilitating symptoms were attributed to teenage hormones, stress from GCSEs and anaemia, which never seemed to do justice to what I was experiencing. Though I was already an active person, training professionally as a ballet dancer for around 40 hours a week, my GP suggested going on an hour long walk every evening to build up my stamina. I was made to feel as though my fatigue was a personal weakness and that I just needed to try harder; looking back now, I can see how dangerous that was.
In spite of my ever-increasing levels of fatigue and pain, I managed to complete my GCSEs and A-Levels and gain a place at my first choice university. I had an amazing first year and, if anything, was more active and involved with student life than most of my healthy friends; I was representing my university in two sports, volunteering, working hard on a science degree and had a busy social life. However, it was the summer after my first year when everything changed.
I suddenly began to experience debilitating fatigue in a whole new league to what I had before, along with bone-crushing pain, extreme sensitivity to light and sound, severe headaches, orthostatic intolerance and more. I went from being an independent student to being unable to be out of bed for more than a couple of minutes, and at this point still nobody knew why. Though awful, it was this relapse that finally meant that medical professionals realised that this was something more serious than what they had originally thought. I was referred to a specialist M.E./CFS service where it became evident that I had M.E. and had had it for many years.
Initially, I was concerned that I wouldn’t be able to return to university, but managed to do so with extra support and help in place. I can’t always make it to lectures and need extra time in exams for rest breaks, but my university has been understanding and accommodating. I’ve even managed to remain living away from home, with a lot of help from my amazing housemates. Being a student hasn’t been without its challenges and it’s hard work studying when brainfog strikes (I swear I’ve forgotten how to write my name before!), but I’m in my third year and still enjoying studying.
The biggest change to come out of my M.E. diagnosis, obviously aside from my own fluctuating health, was the development of Spoonie Survival Kits, my non-profit project which came about totally by accident. ‘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 the harder days. They contain crafts to do in bed, treats to eat and things to wear, and symbolic items to remind sufferers that they’re not alone and that somebody cares.
I made 20 of these kits originally and sold them online, just as a little bit of fundraising in my holidays. 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.
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 charity project. The kits are still funded by my own money, but also by kind donations from supporters and small businesses. They’re then sold online, with all sales money going back into charitable causes: 25% is used to sustain the project and 75% goes to a chronic illness charity, our current charity being Action for M.E.
I and my three fab full-time volunteers, Lauren, Beth and Nikki, all have M.E. and we’re raising money for an M.E. charity, but the kits aren’t just for M.E. sufferers, they’re made for people with all chronic illnesses. I’ve used my own experience of M.E. to choose items that I would like to receive on a bad day, and also accommodate requests for people who are buying the kits. For example, if someone has food allergies I’ll ensure that their kit contains nothing that could trigger a reaction, or if someone has motor difficulties I’ll ensure that any activities or crafts the kit contains are appropriate for the individual.
The way things stand now, the project is achieving 3 things: we’re raising money for worthy causes, we’re helping to make sufferers smile and remind them that they’re more than their illness, and we’re now providing accessible volunteering opportunities too. I’ve found that many people with chronic illnesses may not be physically able to participate in paid employment, but 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.
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. 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 to. We fully rely on the kindness of others and wholeheartedly 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 who 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!