Glastonbury fun

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I talked a bit about my Glastomadrama at Glastonbury. It was pretty stressful even though it did all end well. But I thought I would just share a few photos as we had a really lovely weekend.

I was unsure as to whether we would make it at all as it was only 7/8 weeks after my surgery. But as Timm and my son were working there, it would have been pretty lonely at home. I am so glad I made it, even if I did have to rest a lot whilst we were there.

Sam and Timm Cleasby at Glastonbury festival

We had just the loveliest weekend. It’s been a really stressful time and to get some one on one time with Timm was pure joy. Charlie came with us (Eli is in Australia and Thom didn’t want to come so stayed with his bff) but he is nearly 19 so didn’t want to spend the whole time with us. He mainly just popped back for food, drinks or cash! So it was brilliant to get some time with Timm that was about nothing but fun.

Glastonbury flags

Glastonbury

If you haven’t been to Glastonbury, it’s like another world. A whole city of over 200,000 people, it is absolutely huge! My first Glasto was in 2000 when I was 6 months pregnant and this was my fifth time there. If you have an impairment or disability, then get in touch with the access team as soon as you have your tickets. You can talk through your needs and ensure you have things put in place to support you. Whether that is PA tickets, accessible camping, accessible toilets, disabled platform access or more, don’t assume that you won’t be able to enjoy a festival, have a look into what they can do to make it accessible to you.

she wee at festivals ileostomy bags

For me, it was all about access to the toilets so I knew I could get there at a moments notice and have the space and facilities to change my bag if needed. I didn’t use the accessible toilets unless it was necessary or an emergency. When you are facing a stinky, overflowing festival toilet, having a she wee and an ileostomy was a god send!! Stand up wees and poos for the win!!!

Glastonbury with a teenager

I’ve always taken the kids to festivals since they were babies but it is so different with an adult child! I have to say it was lovely to not have to worry too much about him. It was also great to have time to see bands we like together. He is an absolute doll that biggest bambino of mine!

Camping with an ileostomy, festivals with a stoma chronic illness and festivals

It was a HOT one! Temperatures were well into the 30s which made my ileostomy bag a bit of a nightmare. It was hot and sweaty and trying to keep hydrated was tough. I took some rehydration sachets with me (I always keep some in my kit bag, theyre my number one recommendation!) They were so useful in staying hydrated and well.

Your festival, your way

The main thing for me is to not fall into the FOMO trap and to listen to your body. As I was recovering from surgery and also just living with the aches, pains and fatigue of chronic illness, I know I need to rest. It is easy to feel that you have to do festivals a certain way, that it’s about going wild and being out all night. Or feeling you have to see every single band there.

The reality is that you do your festival your way. Sure, make a list of the bands you’d like to see, but also know that you probably wont see them all. And the things you don’t expect to see that you fall upon will be the best things ever.

Listen to your body and do what you need to do. For me, that meant missing Stormzy as the crowds were too big and I got quite anxious at the thought of being knocked in my stomach. But instead we went and sat in the stone circle and had a drink and watched the whole beautiful festival below us.

It meant going to bed at 9pm on the Saturday night because I was exhausted and in pain. But it was lovely, I had a cup of tea and read my book whilst listening to the Killers playing in the background. My Glasto might not be everyone’s cup of tea, but it was right for me and that’s what is important.

relaxing at a festival chronic illness

The whole weekend was a joy and though at times it was tiring, I was so proud of myself for making it there.

Here’s to Glastonbury 2020!

Sam xx

My Glastonbury hero – there are still good people in the world

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Let me tell you a story about how people are wonderful. A modern Glastonbury tale of social media and kindness.

In April this year, I had my 8th surgery in 5 years. We had Glastonbury tickets and I thought there was no chance of making it, I didn’t think I would be well enough to go.

But I did make it!! Thanks to the accessibility team for sorting me toilet and access route passes and my husband for tons of patience and support. If you are attending a festival, do check on their website for access information and get in touch with their team to discuss your needs. You can find Glastonbury’s Access information here. Also check out Attitude is Everything. Attitude is Everything improves Deaf and disabled people’s access to live music.

Anyway, I got there to the hottest glasto in a long time and my stoma started playing up. The stoma bags were peeling off and I went through 16 in 4 days. I think it was a mix of the heat, sweating, my still lumpy and uneven tummy and unfamiliar food.

Stoma problems

Usually I change my ileostomy bag every 2 or 3 days, so to be safe I packed 18 bags so I’d have loads spare. But by Saturday at Glastonbury I only had 2 bags left and my bag keeps leaking. I enter panic mode, how on earth have I gone through so many? Why didn’t I pack even more? Was I going to have to go home

We went to the medical tent but they didn’t have any ostomy bags. They suggested calling my supplier or going offsite to the nearest hospital and asking them. I called my supplier but they were closed till Monday. The thought of getting offsite and out to a hospital and then getting back seemed too much to bear.

So I decided to tweet my plight with the hashtag #glastomadrama and got 100s of retweets! Maybe just maybe, there will be someone here who has a few bags to spare? I’m panicking, this could be festival over. To get so far to get here then have to leave?! Gutted!

Then I got a phone call from BBC Sheffield – a woman has seen my tweet and called her dad. When he couldn’t get in touch with me, hed seen I present on the BBC and called them to give me his number!

My hero

He was at Glasto and has some spare ostomy bags! I can’t believe it, a knight in stoma bag armour!! We navigate a meet up, which anyone who has been to Glastonbury knows can take a long time and be a nightmare. We exchange text messages saying “I’m wearing a shirt with tigers on it and I’m outside the Caberet tent” and “I’m an old man wearing a flowery hat”!! Eventually we find eachother and he’s happy to give me the bags. But there’s a problem, the bags are in his campsite the other end of Glasto, maybe an hour or so walk. I feel a bit sick, I just don’t think I can manage the walk there and back.

So we went to the Welfare Site and asked for help! They called the A Team who came to our rescue and drove us both to his campervan to redeem the ostomy bags and saving my festival!!!!

Glastonbury A team welfare team disabled accessibility

Andrew spent a good few hours of his Glasto to help out a perfect stranger. He could have ignored the tweet, he could have realised I couldn’t manage the walk &not want to wait for the a team to drive us, he could have turned his head and pretended not to notice. He didn’t.

If not you, then who?

This is Andrew. He redeemed my faith in humans and saved my festival. He said to me ‘if you’re able to help someone, then help them, if not you, then who. If not now, then when?’

Glastodad glastonbury with an ostomy bag

Thank you Andrew, you’re a true gent!

Sam xx