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Glastonbury fun

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

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

That time I met Dynamo and made him sign my ostomy bag…

This year, Timm, the kids and I headed off for a week at Glastonbury festival and had a whale of a time! We hadn’t been with the kids in 10 years and so it was lovely to revisit such an awesome place with our now teenagers, it was a lot less stressful than taking three under 7s!

We saw a lot of bands and had a very chilled out few days in the sun (yes! No rain!!), one afternoon we headed up to the Kids Field where the children still weren’t too old for a lot of silliness and painting and a lot of time sat in a big tent listening to them trying a ton of different instruments.  Then our youngest pointed over to a little tent that had been hosting a variety of children’s entertainers for the day, “Look!” he shouted “Dynamo is playing there!”

We looked at the small space that currently had a man making balloon animals and told him that it wouldn’t be the REAL Dynamo!! He insisted we went in and as we squeezed cross legged into the tiny tent we waited for a low budget version on Dynamo to grace the stage and low and behold, out steps the one and only real life Dynamo! Thom’s smug face screamed ‘I told you so!’

dynamo glastonbury kids field

So we watched a world class magician play to maybe 100 kids in this little corner of Glastonbury and were blown away.  Apparently he plays it every year and only kids are allowed at the front, he doesn’t do it for money but to instil a bit of magic into the lives of children.  How beautiful is that??

So afterwards, Thom points over and says, we can go meet him now! So we joined a little queue and waited, and out came Dynamo!  The kids met him and gave him a hug and got things signed and then pushed me forward – ‘tell him about your blog mum!!’ they shouted.

dynamo crohns disease ostomy bag

 

Dynamo has Crohns Disease and the way he has spoken about it has inspired so many people to not be quite so embarrassed of the condition and so I told him about the blog and just how wonderful he was for speaking out and then (and I know this is super weird!) I asked him to sign one of my ostomy bags!

 

And he did!

dynamo crohns disease ostomy bag

I never thought I would meet Dynamo, and I certainly didn’t expect him to sign my ostomy bag!!!

Sam xx

 

My perfect family… Glastonbury 2017

“You have such a perfect family!”

I got told this after sharing photos of our trip to Glastonbury this year and so I thought I would share a few pics of my perfect family.  We never argue, the kids are always on perfect behaviour, our home is a sanctuary of calm, peace and love.  There is never a raised voice, never a curse word muttered.  We all just live in harmony.

glastonbury perfect family parent blogger sam cleasby sheffield

glastonbury perfect family parent blogger sam cleasby sheffield

glastonbury perfect family parent blogger sam cleasby sheffield

glastonbury perfect family parent blogger sam cleasby sheffield

glastonbury perfect family parent blogger sam cleasby sheffield

glastonbury perfect family parent blogger sam cleasby sheffield

I mean, of course, that is all bullshit.  When I got told how perfect my family are based on these images, it made me think about how we come across on social media.

Yes, we had a wonderful time but I didn’t take photos of the guilt I felt when I had to nap every day. I didn’t take photos of the ostomy bag leak and me crying my eyes out. I didn’t take photos of the arguments the kids had or the time my eldest lost my youngest in a festival or the anxiety attack I had at 4am. I didn’t take photos of the difficulties of raising teenagers and the conflicts they are going through. 

I didn’t take photos of three kids in a car, arguing over who is manspreading leading on to a battle over why the term man spreading is or isn’t sexist and a discussion about who had the biggest balls.  Nor did I photograph the sheer anxiety of letting your 16 year old into a mosh pit alone, or the look on the youngest’s face when he found out the big two didn’t want to take him to see a band.

I didn’t take photos of my worries that my hernia was returning or the feelings of sadness and fear I had despite having this lovely family time. Or the struggles in keeping a relationship going through years of chronic illness.

I love my family, they are wonderful and I am so lucky to have them. But photos on social media only show the best of times so when you have those feelings of worry when you see everyone else having a seemingly perfect life, remember that we are all fighting our own battles and comparison to others is unhealthy and really doesn’t help!

Are my family perfect? Hell no!!!! But we get through each day and share the happy photos to celebrate the times it goes well.

  Sam

Love Festivals, hate camping?

Love the idea of a festival but loathe the reality of sleeping in a tent, washing with baby wipes and shitting in a filthy portaloo?

You want to get yourself to Tramlines!

Tramlines festival in Sheffield is an award winning, city wide festival of live music taking place on 22nd – 24th July this year and is the perfect antidote to festival tent face.  Forget glamping, it’s all about music, glitter and ridiculousness and then getting in your own lovely bed at night!

Seriously, it’s a great idea for those of us who have disabilities or illnesses where the very idea of a festival sends chills.  Camping can be tough, camping at a festival with few facilities and acres of mud between you and your toilet can be a fucking nightmare.

Tramlines is a cracking deal for a weekend of music, at just £32 for a weekend ticket, it’s a full on bargain when you look at the cost of other festivals.  You can pay that for one gig!

reverend and the makers mark tierney tramlines

Photo: Tierney Photography

Sheffield is an amazing city for culture, music and nights out, and the awesome thing about Tramlines is that it is city wide. With a main stage at Ponderosa and second stage on Devonshire Green, you get the big festival feel and a cracking line up.  But what’s even better is the loads of little venues around the city showcasing bands, artists, film and culture.

Be sure to check out the Folk Forest in Endcliffe Park and the beautiful Sheffield Cathedral, as well as all the fringe venues around the city.

Your ticket gets you a wristband that allows you into a ton of venues and you can wander around the city and soak up the brilliant atmosphere and see bands and artists you would usually not know about.

This is a real bonus for those of us with accessibility needs. Festival sites are notoriously shit for accessibility, which can really put off people with illnesses or disabilities where they gave extra needs. Being city wide means you have a wider scope of places to visit and it’s a bit easier to check them out beforehand.

tramlines festival sheffield

Tramlines has accessible viewing platforms on the main stages and if you have a carer, they can get in for free!  There are a few Changing Places in Sheffield meaning if you or your pal needs a full access toilet, you have a choice. Check out the website here. 

The line up this year is fab, I’d highly recommend it for a weekend out whether you’re a regular festival goer or a festival virgin.  Get tickets now before they sell out.  And if you want to see my lovely son playing loud guitars, head over to see Goathead at the Leadmill on the Saturday!
I’ll see you there bad asses!!!!

Love Sam xxx

tramlines festival sheffield

tramlines festival sheffield

 

tramlines festival sheffield
Disclaimer: This is not a paid post, I’ve not received any remuneration for writing about Tramlines, but my brill hubby Timm is a festival director and so I suppose I do indirectly benefit from the festival. Even if I didn’t though, I’d still highly recommend it. Cos it’s wicked. So buy a ticket. 

Music in the Gardens and Crohns and Colitis UK

On Saturday 4th July I went along to Music in the Gardens, a music event in Sheffield by The Rotary Club.  I went not only to listen to the wonderful Proclaimers but also as a representative of Crohns and Colitis UK – South Yorkshire to shake buckets and sell programmes in order to raise money for my favourite charity!

It was a fantastic event that is now in it’s 10th year, each year the club choose charities to support and we were over the moon to be chosen this year.  Set in the gorgeous Botanical Gardens in Sheffield, the event was sold out and filled with music lovers who filled the space with blankets and picnics for an evening of music and charity.

crohns and colitis charity sheffield

 

I took along my husband Timm and eldest son Charlie to help out on the night, along with CCUK members Cherylyn, Ryan, Ruth and her partner and we had a brilliant time, all the event goers were really generous and lots stopped us to talk about either their own dealings with IBD or those of a family member or friend.  It was great to get to chat face to face with so many and I even got recognised as “that bad ass girl” – Fame!!!

 

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We raised £769.06 for Crohns and Colitis UK and couldn’t be prouder!

Sam x

Good Work Tramlines! Thinking about disability

I love Tramlines.  It is the highlight of the year in Sheffield and is an amazing showcase of the wonderful talent we have in this great city.  For those who don’t know, Tramlines is an inner city festival in Sheffield from the 24th to 26th July, it is city wide with a huge main stage and then venues all over town, all for a stonkingly good price of £30 for a weekend ticket!

tramlines timm cleasby

Photo: Timm Cleasby – The Picture Foundry

So I was chatting to the brilliant festival director Sarah Nulty who told me about how Tramlines is trying to be accessible to all and as I love talking poo, obviously that was my first question.  All toilets are relatively spacious and plentiful for able bodied people, but there are accessible toilets for those with specific needs which will be near the disabled viewing platforms.  But if anyone has access needs for the larger toilets due to a medical issue, Tramlines is offering a special wristband that will avoid any embarrassing questioning for those with invisible disabilities who may need to use the accessible loos at the main stages.

reverend and the makers mark tierney tramlines

Photo: Mark Tierney

If you have a medical issue that may require you to use these toilets, you need to head over to the main wristband exchange points on Ponderosa Park or City Hall with some form of proof that you have extra needs and a valid ticket and the staff there will give you a wristband that allows access to these toilets.  Security and staff will be aware what these wristbands allow and this means there is no embarrassing explanation of your needs during the weekend.

Good work Tramlines!

Regarding disabled access, an accessible viewing platform will be available at the Main Stage, and stewards will be available on the day to help direct you. As with the whole festival, shows on the Main Stage do get extremely busy, so please do arrive early.  The disabled loo access band is for use at the Accessible Toilets only at the main stage and Devonshire Green, not the other venues.

Most venues involved in Tramlines have disabled access. Please see individual venue profile pages for full details of disabled access.  Disabled customers with a carer will be able to claim free entrance to the event for one carer. Email ku.gr1566640830o.sen1566640830ilmar1566640830t@ofn1566640830i1566640830 by 10th July to notify them in advance if you plan to attend with a carer by 10th July. No applications will be accepted after this point.
tramlines sheffield disability accessible toilets
The official charity for this year’s festival will be Sheffield Royal Society for the Blind (SRSB). As well as fundraising across the Tramlines site, they are also producing audio guides to the festival for blind and partially-sighted festival-goers.It is great to know that Tramlines are thinking about the needs of all festival goers and trying to ensure that the weekend will be enjoyable for all.  Having an illness or disability can often feel isolating and going to something like a festival seems as difficult as climbing a mountain but more and more events aren’t just fulfilling the legal responsibilities for disabled people but going above and beyond to make sure they are accessible to all.If you have specific questions and issues then do get in touch with the festival by email on ku.gr1566640830o.sen1566640830ilmar1566640830t@ofn1566640830i1566640830 – remember that even the largest of companies are run by human beings and they are there to help.

I would highly recommend giving Tramlines a visit, tickets are still available but get buying quickly as it could easily sell out!

 

See you there!

 

Sam x

 

This is not a sponsored post, I just LOVE Tramlines! My husband is involved in the running of Tramlines but I have received no remuneration for this post.