Humans of ME/CFS
When I was 15 years old, I started to experience a general decline in my health. I felt fatigued, lightheaded and experienced pain in my legs and feet. Every doctor I saw attributed this to “being lazy” and “just hormones.” Even though at this point I was a ballerina in training, sporty, an active volunteer and on my feet for 10+ hours a day, I was told that I needed to improve my fitness and just “try a bit harder,” and then I would feel better.
Over the next four years my health continued to decline, though I managed to gain good marks in my exams, get into my top-choice university and have an amazing first year of being a student. However, during the summer following my first year as I was volunteering abroad, I experienced a huge relapse and became severely unwell.
It was this massive loss of functioning that finally made the doctors take notice, and I was diagnosed with ME/CFS. During that time I was unable to walk, struggled to talk and felt utterly miserable for about a month. However, I made gradual improvements and have been lucky enough to continue with my studies.
I am now about to enter my third year of university, and I’m no longer the active, fun-loving student that I once was. I have significant muscle weakness, which makes walking difficult, along with memory difficulties and impaired cognitive functioning which make studying a challenge, sensory impairment which makes leaving the house painful, and post-exertional malaise, which means I have to strictly pace myself to avoid “crashing” and being confined to bed.
It’s not an easy life, and every day is a struggle. However, after about a year of grieving for my old life, I’m starting to feel like myself again. I have some good laughs with my friends about the awkward, embarrassing and just plain ugly situations that have arisen from being ill, and I do joke about my situation a lot. I’m hoping to use my own experience to work with chronic illness sufferers in the future.
The one thing that’s been most influential in my illness journey so far is (stereotypical as it sounds) how much the little things matter. This led me to create my fundraising initiative Spoonie Survival Kits (“Spoonie” being the slang word for a chronic illness sufferer). The kits are little bags of happiness that aim to remind people that somebody cares. The kits are funded off kind donations and my own money, then sold online to raise money for chronic illness charities. We’re currently reaching thousands of people in 41 countries, I have a fab team of volunteers and it’s leading to so many advocacy opportunities, so you could say it’s going well!
We have volunteering opportunities for others with chronic illnesses. To find out more, please email spooniesurvivalkits@gmail.com.
