If you are a regular follower of my content, you will know how much I love Glastonbury festival. It’s more than a music festival to me. I’ve written many blogs about this special place and the deep meaning it holds for me. I’ve also vlogged many of my years spent there. My last Glastonbury, in June 2019, was particularly special as it was not long after losing my mum. I found myself doing a lot of my grieving and healing in those magical fields.
The Sadness of Two Cancelled Glastonbury Festivals
In October 2019, I once again joined the yearly stress as tickets for the 2020 festival went on sale. Tickets always sell out in minutes. It’s a panicked scramble, hitting refresh every few seconds trying to get through to the booking page. I was thrilled to manage to get a ticket, by the skin of my teeth, and with help from my friends!
To then have the 2020 festival cancelled due to the pandemic was devastating. Rolling over to the second cancellation in 2021, was even more so.
Worrying I Might Never Return To Glastonbury
You would think then, to see Glastonbury confirmed for 2022, I would be thrilled. Unfortunately, I felt the complete opposite. This was because in the intervening years, the yet unexplained and unrelenting fatigue I had been experiencing had reached severe levels. This has since been diagnosed as Myalgic encephalomyelitis otherwise known as chronic fatigue syndrome, or ME/CFS.
What is ME/CFS?
Chronic fatigue syndrome is such a misleading name for this condition. This is one of the reasons why it is more widely referred to as myalgic encephalomyelitis because it is much more than fatigue. Even the word fatigue doesn’t adequately cover the bone-deep exhaustion that we live with each day.
ME/CFS is a neurological condition, affecting multiple body systems and is a nightmare to manage. My most problematic symptoms are orthostatic intolerance, which causes tachycardia (a high heart rate on minimal exertion) and palpitations, making me feel lightheaded and dizzy. I also get severe migraine that lasts for days.
Another issue I have is dysautonomia, which causes an inability to control my body temperature, and I overheat. I also have a lot of cognitive issues, known as ‘brain fog’ which does not do the experience justice! I forget words, my memory is poor and often just space out and lose time.
The fatigue in ME happens because we don’t produce energy in the same way as people without ME. Because of this, any activity, no matter how small, can cause us to experience a ‘crash’, known as post-exertional malaise. This means we must use energy management techniques known as pacing. Pacing helps us to stay within our energy envelope and helps to avoid a crash.
The Problem of Managing my Energy and Mobility at Glastonbury Festival
My current energy envelope is very small. My mobility is especially limited, so much so that earlier this year, I began using a mobility scooter to help with my energy levels.
Using the scooter to cover any distances more than a few steps, had helped to avoid a lot of the post-exertional malaise crashes. How then, would I manage at Glastonbury?
Realistically, I knew that there was absolutely no way that I could attend the festival. Even if I got a lift, I wouldn’t be able to carry my huge backpack and tent and walk from the car park onto the site. If I tried to push through and do it, I would risk causing myself to have a severe flare-up of symptoms. Then of course I would need to put my tent up and somehow manage to walk around the vast festival site for 5 days. What was I thinking?!
Not All Heroes Wear Capes
I stayed in denial until the resale date loomed. With time running out to get a refund, I finally said out loud to my fiancé Chris:
“There is no way I can go to Glastonbury Festival”
What happened next was most unexpected. Chris offered to come with me, to help. As if there wasn’t already a zillion reasons for me to love this man.
This is no small offer; it is one heck of a huge deal because Chris is not a festival fan! He has never been to Glastonbury or indeed any music festival. He has never wanted to and that’s been fine, I have always been happy to go alone or to meet with friends.
It’s not that he doesn’t like camping, he really enjoys it and we’ve been many times. It’s just that he likes the sort of camping where there is a large tent, a comfy bed, hot running water, where it’s quiet, and you don’t need to mud surf to go for a walk!
Glastonbury, or any festival where there are crowds, toilet queues, no showers, and loud music 24/7, well, that’s his idea of hell! Therefore, for Chris to offer his help, and to come with me, speaks volumes of his love for me and there will never be enough ways and words to express how grateful I am.
Applying for Glastonbury Festival Accessibility Support
I had a look online on the Glastonbury website to see what help might be available and to see if it would then make the festival possible for me. It turns out that Glastonbury has an incredible festival accessibility team and has won awards for its accessibility efforts. There is an option to have a PA attend with the ticket holder for support, a shuttle bus to take me and my camping gear from the car park onto the site, a secure disabled campsite with support, mobility scooters for hire, short cuts around the site, access platforms, and so much more. I could see that with this festival accessibility in place, Glastonbury could indeed be possible for me.
I put in a Glastonbury festival accessibility application, and to my surprise and joy, it was accepted! Chris has a PA pass and will be attending the entire festival with me. We will both be staying in Spring Ground, the disabled campsite. This means I will be able to use all the disabled facilities and accessibility help available. I cried when I got the news, I honestly had given up all hope of ever returning! What an incredible service this is for Glastonbury to provide, for people who otherwise could never hope to attend a festival.
Managing my Expectations
Of course, I know this will still have to be a vastly different Glastonbury than my previous ones. I am under no illusion that I’m going to be able to do things the way I used to. Even with all the additional help. I am still going to get incredibly fatigued, and I will need to rest a lot to avoid causing my symptoms to spike.
However, I am OK with that. I will be happy to just pitch and then lie in front of the pyramid stage until Sunday, Anything more than that is a bonus! It is more than I expected to get this year, and just to be in those fields again will make me one happy boy. If it turns out to be too much, at least I tried rather than not going and always wondering if it could have been done if that makes sense? It’s a tough one, because ill or not, I still have to live my life!
A Pre Festival Practice Test Run
Chris and I did a practice run with our new ‘Fred’ friendly camping gear a few weeks ago. Our new gear was initially intended just for car camping, for more luxury camping, as both of us were struggling with our health. It was never intended for festivals, mainly because I didn’t think my ill health was permanent and expected to use my lighter gear for festivals.
Plus, our new gear is way too heavy for the usual festival camping, where you pack light inside your backpack. But now that we have help getting in, we can take this gear with us. This means that I should be more comfortable and get more sleep and therefore be able to keep Fred (my pet name for my fatigue!) quieter for longer.
Take up The Space You Need
It feels very strange to me, to not be packing light. It goes against all my festival ethics! I’m always considerate, I don’t take up too much room, and here I am, taking a 5 man tent for 2 people, with a proper bed complete with duvet and pillows! I was chatting with a fellow Spring Ground camper recently, about ableism and how I often find myself apologising for the things I need. They shared a quote with me, that really hit home and has helped a lot :
“Take up as much space as you need”
I could not manage a crawl-in tent. It would exhaust me getting up and down like that. Our bed only just fits in this 5-man tent, which is not the biggest of 5-man tents. I could not manage to sleep on the floor now. A good night’s sleep will make all the difference in managing my fatigue and ability to survive this festival. This tent gives me room to stand and move safely, without struggling to wash and dress. It gives me the space I need and no more. Any less and the festival would not be possible. Accessibility support exists for this reason.
Making Adaptions for Glastonbury Festival Camping
Of course, we are not taking the kitchen and table! We are instead taking a smaller stove, just for tea and coffee in the tent. We have been told there is a hot water urn in the disabled campsite marque, but I want our own source, just in case and it is only a tiny stove.
I have also brought some additional things, specifically to help me to deal with the heat. My dysautonomia is a pain to manage. It is this that causes my tachycardia, palpitations and excessive sweating.
My sweating is like a can of pringles, once its starts it cannot stop! So, nipping in the bud early is key, I have a parasol, and one of those multi-speed wearable neck fans and hopefully that will help.
Looking Forward to A Different Glastonbury Festival Experience
I am incredibly excited. Not just about getting back to Glastonbury festival, but also about doing and seeing the festival in an entirely new way. I am looking forward to doing the festival in a much more relaxed and laid-back fashion. I think Chris will really enjoy it too, especially because I will be doing it more slowly. He would not have coped with the way I used to do the festival, roughing it in a smaller, crawl-in tent, running from stage to stage, staying up till 4 am! I’m going to also love seeing it through his eyes too. There is something special about attending Glastonbury with a first-timer!
My Plans to Record the Experience
I will be vlogging the week as much as I can. I want to document what it is like as a disabled festival attendee. I am in awe of the incredible service that the Glastonbury Festival accessibility team provide, and I am keen to document that. And of course, I want to capture Chris’s first time. There are sure to be lots of wonderful and very funny moments!
I’m not going to take my professional gear though as I will have enough on my hands learning to drive a bigger mobility scooter and handling crowds and rough terrain/mud. So, you may have rough/shaky and less than par footage, but there will be plenty! Just bear with me as it’s likely to take me a while to recover from this!
Don’t forget to follow me on Instagram and Facebook, and we will keep you updated on our adventures during the week!
Wish us luck and good weather, I cannot imagine Chris knee-deep in mud!
Hello! My name is Finn and I have a passion for creating honest content, that inspires personal growth and promotes well-being.
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