Turning a Hobby into a Job: How I Manage Part-Time Work with ME CFS

It’s been a quiet few months blogging-wise. I haven’t been able to keep up a regular writing routine as my energy has been spent on, amongst other things, my daughter and my other job: teaching. 

I’ve not been particularly vocal about it, but I run my own little business from home teaching piano to children, generally at the complete beginner level. (And yes, before you call the DWP, my work is declared within the permitted work rules.)

I’ve played the piano since a young age and have loved every minute of it. Playing the piano is my go-to during alone time, time to properly clear my head and make music, not worrying about anything else. Even in my lowest of moments, the piano has the ability to lift me up, power me through the darkest of days. 

Luckily (or not, depending on how you look at it) this hobby has become my business. This is a pattern that many of those with ME CFS end up following, turning a hobby into a job, a way of finding a route into employment that doesn’t follow “traditional” patterns. 

For me, I love it. It’s a way of me being able to hold down some part-time work, but never be too far from the sofa. 

Before I continue, it’s really important to anyone reading this, this is NOT a suggestion to others about how to manage their chronic illnesses. It’s even more important to remember that each person with ME CFS is different, with a different set of challenges unique to them. Therefore, what might work for one person, won’t necessarily work for another. Some people with ME CFS are able to work full-time, others are bed-bound and tube-fed. 

In my situation, I’ve managed to stabilise enough in my ME CFS journey to be able to work part-time. Currently I teach for 7 hours a week, spread over 4 days. 

A year ago, this would not have been possible at all. At the beginning of my time with ME CFS, I was just trying to get used to a new way of living that kept me within my boundaries of energy. This involved getting hold of an electric wheelchair, which now is my saviour, a way of conserving energy for when I need it most. 

Now that I’m used to living within limited boundaries of energy, and crashes are less frequent, I’ve been able to set up my music teaching business, something that I’ve wondered about for years. As a primary school teacher for 10 years, I always wondered if that would be the route I’d follow until retirement. Little did I know that several chest infections one winter would leave me with ME CFS and unable to work “traditional” working patterns. 

I set up my business, teaching piano from home, 8 months ago. It immediately was a hit and I quickly became full, teaching 16 students a week, now with a waiting list of 18. Many music teachers have many more students a week than I do, but I have had to be strict with my hours to keep my work within my limits. 

In order to make it work, I’ve had to set really strict rules for myself in managing my energy-expenditure. As part of this, my energy levels need to include being able to be with my daughter. At the moment we’re still working this out, still trying to get to a workable model as often at the weekends I’m too pooped to do much, but we’re getting there. 

The first rule I have is that all my students come to my house. This allows me to relax on the sofa until they arrive and lie back down as soon as they’ve gone. I knew when I set this up that the travelling time required between houses just wouldn’t work for this reason. 

Secondly, I schedule a rest between students, or pairs of students in the case of siblings. That rest is generally lying back on our sofa for a few minutes, but it works for me. It gets my heart rate to calm down a bit before going again. For those who don’t know, I’m being investigated for why my heart rate races when I stand but calms when I’m sat, and further slows once I’m lying down. For this reason, I do all my teaching sat down. Unlike primary school teaching, I don’t need to walk around the classroom to different students. Teaching one child at a time at home means I get to sit on my wheely chair and point from my seating position. 

Finally, this is the most important rule of all that I have to follow. I really have to schedule my days carefully. I know I need to have at least an hour, ideally a couple of hours, worth of lying down resting each day. Mornings are generally when I get stuff done. I have most energy in the mornings. Washing up, laundry, taking E to childcare, food shop, cooking dinner for later. For anything that requires standing for long periods or significant walking (a supermarket for example) I use my powerchair. 

I then have in my schedule that much-needed rest time. I lie down for 1-2 hours after lunch, at the time when my heart rate is most sensitive to my position. Because of this routine I am able to cope with the time spent teaching after-school. Once my teaching is completed, that’s generally me done for the day. I’ll pick up E from childcare, hubby will put her to bed and then I’m on the sofa again. 

This teaching routine means I don’t have energy to have plans for the evenings but I’m ok with that for now. While I’d love to be able to have the energy to take part in my other hobby, singing in a choir, that just isn’t possible with the energy expenditure at the moment. Meeting friends happens during the day and I’m ok with that too. 

I’m self-employed,I have a way of making it work for me and my family and we’re content with that. I don’t know what the future holds but for now, life is good.

Until next time,

Soph x

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