Sunday, 16 July 2017

M.E and Festivals...Making it work


Yesterday I posted a video about my weekend at 2000 Trees. A few hours later when I was reading through the comments and found one from a fellow spoonie  (Hi Melanie) asking how on earth I manage to go to festivals with M.E. I tried to answer as succinctly as possible in the comments, but I thought the subject deserved a blog post, one that I hope will be useful for those suffering with an illness but who are yearning to experience the joy of live music over the summer months.

Here are my thoughts, tips and experiences.

1.Acknowledge what phase of your illness you’re in. Most people will have bad patches and slightly better patches with chronic illnesses. There are some periods where attending a festival is pretty much impossible or even potentially dangerous to attempt. This summer, despite making lots of work plans, I had to abort attending Download due to a Kidney Infection I’d left a bit too long and it has developed into something more serious. I’m luckily in a helpful position where I can attend festivals fairly last minute by using my contacts to get press passes, but for those purchasing tickets well in advance this isn’t is simple, so you may want to have in mind that if you’re gonna hope for the best and buy a ticket, you may end up having to sell it if the festivals dates end up falling on a bad phase.

2. Do your research. Speak to people with similar illnesses who have attended the events to find out the strengths and weaknesses of each festivals in an attempt to seek out their suitability to your particular difficulties. Most festival websites will have some info regarding disability access, but don’t be afraid to ask more questions and get in touch with them. Being anxious won’t help your enjoyment of the weekend, so having any questions answered will hopefully reduce the potential for this. While in contact with the festival explain your particular needs and requirements to see how well they are able to accommodate you. Don’t buy a ticket unless you are satisfied with the answers you get and feel the event is one you can be safe and comfortable at. 

3. I know for many it’s a huge part of festival-ing, but for many of us camping is just not practical or sensible. If I have to camp I will make the decision to no longer attend the festival, it’s as simple as that. I know that camping will leave me feeling horribly unwell. If I do the standard form of camping it’s the hard floor that will leave me with an extremely painful back, neck and limbs. But even if I do glamping I’ll be in a bad way as it’s so important that I try and get quality sleep, and there’s still disturbances even within a luxury camping environment. The main thing for me is the toilet situation. with kidney issues and IBS I need easy/regular access to the loo is essential and this is fairly unlikely in a camping scenario.

Booking hotels is fine if you’re rolling in cash, but if like me you don’t have it going spare you’ll need to save or find a way to get some money from somewhere (I worked on a star while at 2000 Trees to cover my expenses). You also have to consider that being in a hotel/b&b will also mean taxi’s to and from the site each day, so you’ll ether want to make sure you’re in a popular hotel where lots of other festival goers are so that you can share costs with them .


4. Painkillers. On the whole I try, where possible, not to rely on medicine that mask how I’m feeling. Not because I want to feel pain, or think that it’s weak to seek remedy and peace through medicine, but with some aspects of my illness I worry I’ll do myself more damage by not feeling when I’m pushing myself too hard. From trial and error I’ve learned that to get through a weekend at a festival I do need a regular supply of strong painkillers. Due to my work and the severity of M.E other people perceive me to have, I have spent many hours on my feet during my days at festivals, and at many times been in excruciating pain. This pain didn’t subside when I got back to my hotel rooms either, before deciding to numb with strong painkillers I’d have uncomfortable nights with buzzing legs and feet, a blinding headache, and terrible lower back pain, as well as shoulder pain where I’d spent the day carrying tripods, cameras etc.

5. Clear your diary. I know it’s hard for people with careers and other responsibilities to do this, but if you’re putting your body through 1-5 days of being outside, consuming loud noises, regular social interactions, bad food and lots of standing, you need to expect the days that follow are going to be pretty tough. You really have to weigh up whether the repercussions of attending the festival are worth dealing with for the happiness and joy you’ll get from experiencing the festival. I’m at the point now where I feel I’ve had some beautiful moments at festivals, but it’s not longer the right thing to do which is why I have kinda have decided this may well be my last season doing festivals, at least in the way I have been doing them for the last ten years or so.

6. If its the first time you’re attempting a festival, don’t be over-ambitious, perhaps just dip your toes into the experience with a day ticket to a local event. It has always felt far less daunting for me to attend Surrey festivals like Guildfest and Redfest because I know if I was to feel too unwell to carry on I could get myself home fairly easy, and I would only lose the cost of a day ticket which is usually fairly affordable. London has a vast amount of day festivals appealing to all manner of musical persuasions, so why not get a cheap hotel (or a nice one if you can afford) and go to one of those to see how you get on. Hampton Court Music Festival is a very civilised affair, and you can sit down while enjoying the musical delights in the historical setting, and there are many others with seated options.

7. Think carefully about who you go with. Try and make sure you have someone with you who will be happy to queue up and get you food and drink while you sit down. You also don’t want someone with you who will make you feel guilty if you feel unable to rush to one of the tents to see their fave band, or who will get frustrated if you’re being slow or even find yourself not able to leave the hotel for one or more of the days. I think for your own peace of mind in honour of fairness it’s important that you make the person you are going with completely aware of what could happen and what sort of help you’ll need, just so they’re mentally prepared and definitely up for the task. Make sure they’re clued up on your medicines too and that you always have clear meeting points/rules of action should you get separated. At the start of the festival you should both locate the tents you may need (First Aid tent, the stall that sells imodiums etc).


8. At Reading and Download in particular, I notice that many people set up with their group of friends somewhere in front of the Main Stage and just stay there all day. They’ll have chairs, maybe an umbrella, snacks and refreshments, and make it their makeshift temporary home in the field. Yes you may miss some of the gems performing on others stages, but it does mean far less exertion and you’ll end the day in far less pain.

9. This leads nicely onto my next point. Be frugal about the amount of bands you’re going to see. If you don’t want to stay in one spot, and want to enjoy all the different stages the festival has to offer, try and work out what bands you really want/need to see, and don’t push beyond that. Keep the list as small as you can so you can enjoy those bands feeling as well as energised as possible. Don’t feel like you need to get deep into the crowd either. Many of the smaller tents have areas outside where you can sit and still see the stage and hear the music just fine. Many even have screens on the backend of the tent (the NME RADIO 1 Tent at Reading usually does) so you have a great view of what’s going on a few metres away without the discomfort or sweat.

10. This one is surprisingly troublesome as a blogger who’s meant to showcase new outfits and promote a stylish aesthetic with their festival outfits, but I HAVE to think about comfort and practicality when it comes to what I wear to festival. I don’t need any other factors contributing to discomfort or pain. I make sure I wear the most comfortable shoes I own (ones that will protect me in all foreseeable weather conditions). I make sure I have a layer that will keep me warm when it gets chillier, as I tend to feel the cold a lot. I have sunglasses for if my eyes are feeling particularly sensitive to light….you get the idea.

11.Festivals like Download give people the opportunity to pay a bit extra for tickets that give them the privelages VIP’s and Guests get (RIP). I would thoroughly recommend this for people who would benefit greatly from shorter toilet and bar queues, and a place away from the intensity of the main arena to sit and catch your breath.

12. Have information on your person that outlines the specifics of your conditions, the medicine/dosage your on, and where you’re keeping your medicine while you’re at the festival. It would be helpful to have any phone numbers of relatives/partners and the person your at the festival with on you too, should you fall into difficulty if separated from them.

13. I’ve always found travelling to a festival one of the most exhausting aspects, How inconvenient to be so drained of energy before the fun of the festival even kicks off. If you can get a lift, this will be the kindest on your body and preserve the most energy. Lugging your heavy bags on trains and trekking to site will take it’s toll, particularly because a start of a festival usually involves some queuing and some lenthy/tricky terrain. Thick mud is the worst, after all some of us find even and solid ground taxing, imagine having to use your pathetic muscles to pull yourself out of the sludge with each step you take. I was lucky enough to get a lift to 2000 Trees last weekend but unfortunately it turned out they were going to go straight to the site. I needed to get to my hotel to check in first and drop off my bags. So this meant lugging all my weekends stuff (I packed quite a lot as I thought I had lifts both ways and wouldn’t have to carry it more than a couple metres) from the car park to where you pick up the passes and then up to the entrance of the site to get a taxi. This was largely uphill and in 30 degree heat. I ended up in panting with exhaustion and in tears because of the pain - feeling completely ruined and defeated before I’d even seen my first band. This is my fault though, I didn’t speak up when they said they were going straight to site. I should have had the guts to ask whether they could drop me at my hotel on route. That’s the thing with invisible illnesses, it’s not so easy for others to know what’s needed or how damaging those small decisions can be to your well- being. Sadly it’s up to us to constantly explain, however tiresome that can be.

14. Many people with CFS struggle with stomach issues and allergies. A lot of us are on carefully tailored diets, which can be hard to manage at festivals. They food options have improved greatly over the last few years though,  but some festivals are considerably better than others. If you’re unsure equip yourself with some slow energy releasing food you can snack on throughout the day, and stay hydrated. I don’t drink, and I think staying off alcohol has made things a lot easier for me at festivals. Adding a hangover and even more trips to the loo isn’t going to help! 2000 Trees had some great food options, with plenty of veggie and vegan options and food that didn’t feel doused in grease and msg. 



15. Lastly, listen to your body. I know you’ll go with a level of determination and the fangirl/boy in you will want to ensure you’re there for when your fave bands storm the stage, but you don’t want to push yourself to such an extent on day 1 that you’ll ruin the chances of your enjoying or even being able to attend day 2/3. Think of it like getting sunburnt on the first day of holiday and then having to sit inside while everyone’s by the pool. Let the people you’re with know what you’re struggling with so they can help (if they can) and don’t be afraid to utilise festivals angels, the stewards, the first aid tents and so on who are there to help should you need it.

So that’s just a few things that come to mind. I really hope this post helps at least one person see that there’s a way they can make a festival work for them and their unique situation. It may involve more research, thorough planning, and even a large wad of cash on top of the usual festival ticket, but I’d love everyone who wants to experience a summer festival to be able to try it at least once.

Do let me know if this has helped or if you’re planning on going to one soon…
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2 comments

Melanie said...

Hi Sophie, your comment earlier and this post have been so helpful!
It's now been 5 years since my last festival, that reading weekend was AMAZING!Then over the years my M.E gradually got worse and has left me mostly house bound. Most day trips, weekends away and holidays have had to stop sadly.
However, you have inspired me! My partner and I have now decided we will try our best to properly plan a day trip to a festival next year. Then who knows maybe the next year we could try something a bit longer.
Thank you so much Sophie, take care!
Melanie

Melanie said...

Hi Sophie, this along with your comment earlier have been such helpful reads!
I've had M.E for the best part of the last 10 years though only managed to get a diagnosis once my health really deteriorated a couple of years ago. These days I'm mostly house bound and my partner and I generally have to avoid the day trips, weekends away and holidays. Therefore I thought a festival would be out of the question! Thinking back to my last Reading festival about 6 years ago and how a long weekend of standing outside, with no easy access to (nice) toilets and healthy food would now be the death of me! Let alone camping as well!
However, thanks to you, my partner and I now feel, with enough planning, a day ticket to a festival next year could be achived. Thank you so much for taking the time to write this!
Take care and look after yourself. X

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