BLOG: Volunteering at music festivals with ME/CFS
Posted on 23.06.2017
I'm Katherine, I'm 25, I've had ME/CFS for over 7 years and I've been volunteering at UK music festivals with Oxfam for the last 4. There are a lot of big challenges in attending a festival with ME/CFS, but hopefully my experience shows others that, with some adjustments and good planning, it’s still possible.
2013 – My First Festival
At my first festival, Reading, I helped to steward the accessible viewing platforms. At this point I had been diagnosed with ME/CFS for over three years, but I had been making steady progress so I was hopeful I would be well enough to enjoy myself. I had a reasonably chilled out time: did some stewarding, watched some bands, slept a relatively normal amount, drank a can of energy drink every day, and I avoided alcohol at all costs!
I felt reasonably okay throughout the festival, but once I got home I was very poorly. I had a viral infection, followed by widespread joint pain that has waxed and waned but never left me since.
2014 – Keeping Going
The following year, I volunteered at Reading again, not letting my previous experience put me off. My shift pattern was changed so I worked from 12-6 every day in an admin role, which made my festival very calm. I still had time to watch bands and even made it to my first silent disco! I still lived on energy drinks, and was a bit under the weather after this festival, but it was nothing compared to the previous year.
2015 – Stepping it Up
This year I took on 2 festivals, Boardmasters and Reading, and took my younger sister with me. Oxfam kindly gave me shifts where I could sit down. Both festivals were a difficult balance of fun and rest, as I wanted my sister to see everything. I did manage rather a lot, but also went through a whole bunch of painkillers! Oxfam really looked after me that year while I was suffering, and it really made me appreciate volunteering with them. It would have been a huge struggle otherwise, although medics and welfare are always available to provide assistance to anyone.
2016 – The Big One
Last year I really turned it up to 11. My sister and I planned a very brave whole summer of festivals, and spent 10 weeks away from home! I had been slowly and steadily improving and so I was excited but very nervous. I packed an extensive first aid kit, multivitamins to supplement the festival diet, and a whole lot of painkillers.
Oxfam gave me mostly seated shifts, which was particularly useful in helping me to cope. It was challenging at times but I managed much better than I thought I would. I was in tears after my first shift because I was terrified of being ill all summer, and at one festival I was so exhausted that I couldn't keep any food in me and had to go to bed for half a day. At another festival I battled my first overnight shift and had to rest for the entire festival. I almost hit the exhaustion point again.
But I learned that as long as I included some rest time in my days I tended to manage fairly well. I actually found that sometimes during the summer I felt surprisingly well – better than usual. I can only attribute this to the amount of time spent outside in the fresh air, sunlight, and the natural pattern of waking up with the sun, which is hard to avoid in a tent!
Attending a festival with ME/CFS
Your fun might not look like everyone else's, and that's okay!
My biggest piece of advice would be to treat yourself as if you were at home. If you need to rest or sleep then do it. Missing acts will be worth it if you don't have to suffer for the rest of the festival!
- Contact the festival if you need an accessible ticket. They want you to have a good time!
- Most festivals offer accessible camping, which needs to be booked in advance. If they don’t, ‘quiet’ or ‘family’ campsites are usually quieter and calmer.
- Bring everything you need, but don't overpack – you have to carry it.
- Wear sensible shoes and clothes and prepare for adverse weather.
- Take a good bed! Air bed or camp bed, you don't want to be lying on the floor.
- Don't be afraid to sit down. Sit anywhere, anytime.
- Ask for help – staff are there to help you have a good time.
- Stay hydrated, apply sun cream, wear a hat, and cover up. You can even use a cute umbrella as a parasol!
- Keep your day bag as light as possible. Check out the lockers.
- Carry your medication on you at all times. If you have strong medication like morphine, carry your prescription in case you need to prove it to security.
- Don't be tempted to stay up really late – the heat of the sun will wake you up early.
- Have fun, but remember your fun might not look like everyone else's, and that's okay!
If you would be interested in Mystery Shopping venues and festivals for Attitude is Everything, click here.
If you would like to learn more abotu Oxfam Stewarding, click here.