I first had the idea to create an M.E./C.F.S. training organisation around 2 years ago. My 5 years or so of being an M.E./C.F.S. advocate and 12 years of being an M.E. patient had opened my eyes about the desperate need for education about M.E./C.F.S amongst professionals who have a duty of care over the patient community, whether they work in education, healthcare, or business.
My first steps on my social entrepreneur ‘journey’ was to apply to the School of Social Entrepreneurs 2017-18 cohort. I did a 2-minute pitch and I got in! Unfortunately, a couple of months in, my M.E. told me in no uncertain terms that it didn’t like long days of learning and travel, so I had to drop out. My immediate reaction was ‘I can’t do this’, my M.E. won’t allow me to be a social entrepreneur as it requires far too much energy. Energy that I simply don’t have. So I shelved my plans…… for about 2 months.
I may have M.E. and my health may restrict the work I can do but it doesn’t lessen the desperate need for education. So, I got practical and laid out a personal strategic plan to make sure that a training organisation would be possible in the near future.
I enrolled in a teacher training course, it entailed one week of classroom learning and then the course could be completed in my own time at home. I originally planned to get the course completed within 6 weeks so that I could move on to the next step – learning how to set up a social enterprise. However, life and health got in the way and the course took around 6 months for me to complete. I did complete it though and I can now deliver effective teaching to my learners. That was the aim of doing the course, I wanted to make sure I wasn’t just raising awareness, I wanted to ensure learning was actually taking place.
Next came asking lots and lots of questions to a lot of different people from a range of backgrounds. Any budding social entrepreneurs out there that haven’t been successful in getting places on social enterprise training courses, there are different ways to do it. There is a lot of free information available out there. I should know, I used a lot of it! I decided that being a Community Interest Company was the best fit for what I wanted to achieve, I got myself some Non-Executive Directors, registered with Companies House and Stripy Lightbulb CIC was ‘born’ on 7th September 2018. I had not decided on the format of my training at this point. That came a short time later.
Last year, I delivered a training session to a large group of dental students. It was 45 minutes long and although I felt fine on the day, I was in bed for 3 days afterward recovering from my over-exertion. Delivering face-to-face training simply isn’t possible for someone with M.E. Without me there is no business. My own health has to be my number one priority to ensure longevity for Stripy Lightbulb CIC.
Online training! I had my own lightbulb moment when trying to decide what type of educational organisation Stripy Lightbulb CIC would be. Creating the content would be intensive and would affect my health but once it was all up and CPD accredited my daily role would be mainly promotion and updating content if M.E. research or policy changed. Perfect! It is a good fit for me personally but also convenient for learners who can undertake the courses in their own time. Online is also appropriate given that M.E./C.F.S. is a global health crisis. Anyone, anywhere on the planet can do my e-training. I have deliberately made the course content patient rather than location-specific. Politics may affect how patients are ‘managed’ around the world but the condition itself remains the same.
The e-training platform launched in March 2019! Excellent! I had managed to leapfrog over the hurdles M.E. had presented in my own personal and working life. I did it!
Recently, I have realised that a massive hurdle for me to still overcome is being visible. I am unable to go to networking events, ‘trade’ events, or to arrange face-to-face meetings with the companies I need to be talking to. My own M.E. simply won’t permit it. It’s very frustrating for me as I have a ‘can do’ proactive attitude and I get carried away with making plans before I have to rein myself in and respect my limitations. My next task is to get someone to represent Stripy Lightbulb at the abovementioned regular events. This isn’t as easy as it sounds, recruiting volunteers is tricky enough but this person has to know about, or at least be willing to learn about and understand, M.E./C.F.S. and be able to talk passionately about the subject.
I have been told so many times by other professionals that people engage with me, they get swept up with my enthusiasm and want to help my cause. That is always a double-edged sword. Whilst it is lovely to hear it is also a hindrance when I can’t always use ‘me’ to engage with other people. Being a keyboard warrior doesn’t have the same effect as being in a room with people wanting to learn more about the condition.
When my M.E. has taken a hit because of a particularly busy week and I am laying on my bed unable to move or communicate, I pause to remember that I am tackling the global health crisis with education, does it make flared symptoms worth it? Absolutely!
Take a look at www.stripylightbulb.com