The Big Scary Life Thing

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Hello again! It’s been a while. I have avoided this blog for a few reasons, but before I get into the Big Scary Life Thing, a little introduction, or reintroduction to me. My name is Sam, I live with an ileostomy, chronic pain and chronic illness, I started this blog in 2012 to share my journey through hospital visits and surgeries, to have a way to update my big sister who lives in Australia and as a cathartic way to let it all out. I started the blog not really believing anyone other than my sister and maybe a friend or two would read it and that suited me just fine, I have always loved to write, it is definitely therapy for me and so it was a huge shock when at first hundreds of people began to read, then thousands, then millions…

I realised that through sharing my story, I had the ability to help other people, whether they were living with similar issues to me, or whether they just connected on some other level and it felt good. But I always kept to my guns of writing about what felt right, of writing for myself first and to do it for the reasons that I began. Soon, I began to be nominated for and win awards, to get other opportunities such as writing for the Metro, Psychologies Magazine and Red Magazine. I was invited to do talks all over the UK and Europe and a career as a disability activist was born. But as times moved on and social media grew, as my illness and body became more complex, as my mental health struggled to cope with all that I was dealing with, with each more complex and life threatening surgery, I leant away from writing. It felt too much, too scary. I had negative comments from family members unhappy with what I chose to write about or using my blog as a way to target me. I had the daily trolling comments from men telling me I was too. Too fat, too ugly, too old, too stupid. And it all got a bit much.

I turned more toward social media, to instagram and Facebook and that felt a little safer, more cocooned, I wasn’t feeling the imposter syndrome if I only shared stuff in the way that everyone else does. Also the world was telling me that no one has the patience, time or willingness to read long form blogs any more. It was all about the videos and images, the snappy info pics that are consumed in seconds. No one wants to read a long blog written by a no-one.

This summer, my life changed drastically and forever. The Big Scary Life Thing happened and I withdrew further, from friends, from family, from the internet. I made the decision to go to Australia for three months, to visit my sister and give myself some time to heal, to think, to have therapy. To get away from The Big Scary Life thing and to free myself from all the restraints that were tying me up in knots. I have been here for a month now, and for the first time in ages, I had the urge to write. At first the insecurities came flooding back, who would want to read this? Is it self important of me to put my words into the internet ether? Does anyone care? And then I remembered why I started this blog in the first place. I didn’t write my words just for others, I wrote for myself. I wrote to heal, to process, to love myself. And so today is the day where I throw all these ‘rules’ in the bin. The reality is that I don’t want to be an ‘influencer’. I don’t care about how many views or likes I get. I don’t care if AI is taking over and telling the world that you have something to say over 10 seconds to hold peoples attention. I don’t want a pre-created schedule given to me in how to make the most compelling content. I just want to write.

The other reason I have trepidation in my words about The Big Scary Life Thing is the concern of the impact on what and how I share my life, this isn’t just affecting me, it affects my three children and so there are things that I won’t share, that are private and for my family to deal with. But let’s get it out there (if you haven’t already watched my video on social media). My husband and I are separated.

That’s such a small sentence but it punches me in the gut every time I read or say it. If you have followed my blog for a long time, you will know that I talk about Timm a lot, we met when I was just 17 and we have been together for 27 years, he is my only love, he has been a huge part of my health journey, he has been my carer, he has been through every surgery and treatment right by my side and it has all affected him almost as much as it has affected me. I have talked about him and our relationship so much that it would be odd if I just moved on and didn’t talk about the fact that we aren’t together any more.

I have been with Timm since I was 17, my whole adult life has been with him. My illness and surgeries had brought us together in ways I didn’t know possible, the fear and loss that can often cause divide for many pushed us closer. In his wedding vows, Timm told me “Absence diminishes small loves and increases great ones, as the wind blows out the candle and fans the bonfire.” For the first half of our relationship, he worked away from home, touring with bands and working on music events, the absence he mentions referred to the physical distance between us, but I think it also works as a good metaphor for dealing with chronic illness. And it truly did stoke our bonfire. We were in love.

In November 2024, we made a move that had been in planning for over 12 years, we left our home town of Sheffield and moved to a beautiful cottage in the countryside by the coast. It had been our dream for years, that when our children all grew up and left home, that we would focus on ourselves and make a life that would bring us joy. We have an acre of land, chickens, ducks, dogs and a cat. We planted our garden and fruit trees that we dreamt we would sit under for the rest of our lives. We jumped into village life and the dream actually came true. My health started to improve as I had finally found medication that eased my pain and life was good. We were happy.

And then it wasn’t. The Big Scary Life Thing happened. We split up.

The shock was like an explosion, a huge catastrophic messy bang followed by a silent numbness, like the world’s volume got muted and I was left shell shocked, my ears ringing with 27 years of memories. I never knew the physical pain of emotional hurt till that moment, I got an emotional flu, my arms and legs heavy, an exhaustion took over my brain, my head ached with confusion and hurt whilst my heart felt bruised and battered, like it had taken the full hit of a bus crashing through my chest. Though I had spent half our relationship physically alone as he toured the world, I never felt so alone or lonely as I do now.

What happened is a private story that the world doesn’t need to hear the details of. Things came out that broke my heart, I still wanted to try, to go to couple’s therapy, to not throw away 27 years. But it wasn’t to be. I was left in a place I never ever thought I would be, alone.

There is a lot of advice out there about separation and divorce, about heartbreak and hurt. But it all still feels like I am the only person in the world feeling how I do right now. I started therapy and that has been a lifesaver, a safe space to be able to talk about anything and everything. I spoke to friends and borrowed their strength when I had none of my own. I tried to use logic and debate to figure out what the f*** had gone wrong, I wished I had a pill that would blank my mind out so we could just go back to how things were, I smoked way too many cigarettes and drank too much wine and gin in my bed. I felt hopeless. I couldn’t see the light, the light was gone. I forgot how to shower, how to care for myself, I cried myself dry and then found another hidden well of tears and cried those out too. I felt self loathing and pity, I questioned everything about myself. Am I not enough? Am I too. Too fat, too ugly, too old, too stupid? Is my illness and disability simply too much of a burden?

I spoke to my sister most days, and she kept suggesting I came out to Australia to take a break. The idea seemed preposterous. I am Sam, I put everyone else before me, I don’t take solo holidays, I don’t spend money on myself, I am not frivolous. The doubt hit me hard, I am not able to do this, I need Timm to help me and support me to be able to travel. I can’t do this. I can’t. But a little voice in my head was saying, but what if? What if you can do this? What if you are stronger than your believe and more worthy than you have ever thought? And just like that, I did it. I booked the flights. And not only did I book the flights, I booked BUSINESS CLASS flights! The shimmer of excitement mixed with the sludginess of grief and terror. I had no idea if this was the right thing to do, but I knew I couldn’t carry on as we were. Living in the same house, in separate rooms but sharing a space that no longer felt safe and happy and warm. The rows and the hurt made the air heavy and black, the desire of habit to just slip back into each others arms, to ignore it all and make things ok whilst not actually dealing with any of the problems, the want to sweep it all under the carpet or squeeze it in the bottom drawer was huge. But I knew it wasn’t right.

And so here I am. I have been in Australia four weeks today. And a lot has happened. I have cried, laughed, cried some more, felt lonely, scared, confused. I have forced myself to do solo trips and to try new things to attempt to heal myself. I have continued with my therapy. I have spent joyous time with my sister, brother in law, niece and my wonderful daughter who is also living out here. I still feel confusion, loss, grief. I have no idea what the right thing to do in moving forward is, but I am becoming more accepting of the fact that this confusion is OK, I don’t need to have it all figured out, I can sit in this space without knowing what my future looks like. I have acknowledged that I have spent my entire adult life with one man and so it’s ok to feel broken when your life has tumbled down around you.

I don’t know what happens next. But I do know that writing this has felt good. It feels like it did back in 2012 when I started. It feels cathartic and freeing to be able to spill my words across the page and let it out. And it feels freeing to not care if anyone reads this ever!

I am writing this for me. And if you have discovered my little corner of the internet and my words have helped you at all then that makes me incredibly happy too. I truly believe that everything always better when you hear someone else say ‘me too’. And so I will continue to write, to share, to process and to be present in my life as it looks right now.

I will be back.

Peace and love

Sam xx

Incredible Disabled People to follow this Disability Pride Month

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When I first started this blog, it was because there was no one in the UK talking about life with IBD and an ostomy in a blog format, though there was the incredible Thaila Skye making vlogs and videos – Big up the OGs!!!

Today we are lucky that we have so many people who share their stories and journeys, who advocate and fight for awareness, change and disability activism and so to celebrate Disability Pride Month this July, I thought I would share some of the brilliant people that I have met or worked with who have inspired me to do more, shout louder and be better! Please check them out, follow and support the incredible work they do.

I already mentioned her but she has to be my number one as she was the other lone voice when I started this blog over 13 years ago! She shares not only her stoma story, but also about her journey through hair loss – Thaila Skye Instagram.

Kat Paylor-Bent: Multi-Award Winning Adaptive Fashion Designer who debuted braille on the catwalk!! Seated Sewing Instagram.

Content creator, model, Public Speaker and disability activist, Isaac is brilliant! Isaac Harvey Instagram.

Lizzie lives with Crohn’s, HSD and dysautonomia and shares her story through makeup on Instagram and tiktok. Even if you aren’t a make up lover, she is well worth a follow! SlaywithSparkle Links.

Run by the amazing Kelly Gordon and Emma Gardner, WITH NOT FOR is a disability founded talent & production agency that exclusively represents Disabled creatives on a mission to bring more Disabled talent into creative work places. With Not For Website and With Not For Instagram.

Avid gig-goer – music, sport, comedy, theatre, travel access reviews and creator of the 101 Venue project 2025. Wheelie Rocking Pink Instagram.

A Crip led grassroots group working nationally to fight government cuts and reduce isolation through community. Crips Against Cuts Instagram.

Kate is an author and poet who writes about neurodivergence and Dr Who, what more could you ask for! Kate Fox Writer Instagram.

Government Special Advisor, Lobbyist, Researcher & Policy Designer, Legal Expert, Founder & Investor, Celia is a powerhouse of change! Celia LinkedIn

PeriodPositive movement founder, Chella is an author, public speaker and all round wonderful human. Chella Quint Instagram.

Author, Accessible travel and lifestyle and theatre blogger, Pippa speaks about life with a chronic illness. Life of Pippa Instagram.

Inclusion and Accessibility Specialist, radio presenter, businesswoman and disability activist. Dr Shani Dhanda instagram.

Inclusive skincare designed for the blind & VI; Suitable for all. Blind Beauty Instagram.

Guardian journalist. Commentator of the Year 2024. Author of Who Wants Normal? The Disabled Girls’ Guide to Life and Crippled. Frances Ryan Instagram.

MS Together: Founded by the incredible Amy Thompson, MS Together is a charity providing social and mental health support to people living with Multiple Sclerosis specifically those aged 18-35. MS Together Instagram.

Please head and follow these brilliant people and also head over to my instagram and Facebook and let me know who else I should know about!

This is by no means an exhaustive list and I am sure I am missing some wonderful people and groups, so apologies if you aren’t included here. I think it is important that we support disabled activists and creators and recognise that we are all working towards the same cause. Please check out these people and groups and support their work today.

Peace and Love

Sam xx

Disability Pride Month – Celebrating Identity, Challenging Barriers

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Disability Pride Flag Colours

July is Disability Pride Month, and if you’ve seen the Disability Pride Flag and wondered what it really stands for, here’s the breakdown. This flag isn’t just beautiful, it’s powerful. It represents ALL of us.

💚 Green – Sensory disabilities

💙 Blue – Emotional and psychiatric disabilities

🤍 White – Non-visible and undiagnosed disabilities

💛 Gold – Neurodiversity

❤️ Red – Physical disabilities

🖤 Faded charcoal black background – A space of mourning and memory. It honors disabled people who’ve died due to ableism, violence, neglect, suicide, illness, and eugenics. It also represents the rage and rebellion against a world that constantly fails, ignores, or harms us.

The stripes cut through that darkness like pride, power, and protest. We aren’t just surviving, we’re thriving, resisting, and redefining what pride looks like.

This flag is for all of us, the diagnosed and undiagnosed, the visible and invisible, the joyful, the grieving, the protesting, the proud.

A disability pride flag of green, blue, white, gold and red against a charcoal background, and Sam cleasby is a woman with medium-length dark curly hair standing confidently against a colorful background featuring the Disability Pride flag. They are nude, with their body covered in vibrant splashes and drips of paint in blue, green, red, and yellow. Their eyes are closed, and their expression is calm and powerful. One arm is raised above their head while the other crosses their chest. They have an ostomy bag on their abdomen, also splattered with paint. In the top right corner, the word “PRIDE” appears in large, multicolored letters.

Why Disability Pride?

Every July, Disability Pride Month is a time to celebrate disabled people, challenge stigma, and advocate for inclusion. Although the month originated in the United States, it’s increasingly recognised here in the UK as an important opportunity to shine a light on the achievements and rights of disabled people and to acknowledge the work still needed to build a more accessible and equitable society.

Why July?

Disability Pride Month began in the US in July 1990, marking the signing of the Americans with Disabilities Act (ADA). In the UK, we have adopted July as a chance to raise awareness and celebrate disability culture and identity.

Here in the UK, key milestones in disability rights include the Disability Discrimination Act (DDA) 1995 and the Equality Act 2010, which made it unlawful to discriminate against people based on disability. While these laws were crucial, disabled people still face significant barriers in employment, healthcare, education, and public life, which is why Disability Pride Month is as relevant as ever. Especially at the minute whilst the UK government is reducing support for disabled people.

What Does Disability Pride Mean?

Disability Pride challenges the idea that disability is something to hide or be ashamed of. Instead, it affirms that disability is a natural part of human diversity, something to embrace, not erase.

For many in the UK, Disability Pride also means acknowledging the diversity of disabled experiences, visible and invisible disabilities, mental health conditions, chronic illnesses, neurodivergence and pushing back against ableism in all its forms.

It’s about saying: we deserve to be here, as we are, and to live fully accessible, fulfilling lives.

How you can mark Disability Pride Month

Whether you’re disabled yourself or an ally, here are some ways to engage meaningfully this July:

Support UK-based disabled activists, artists, and businesses: Follow and amplify voices of disabled creators in your community.

Learn UK disability history: From the 1960s disability rights protests to the ongoing campaigns against austerity cuts that disproportionately harm disabled people, the UK has a rich (and still evolving) disability rights movement.

Assess accessibility around you: Whether it’s at work, in public spaces, or online, consider how accessible your environment truly is. Advocate for improvements where needed.

Challenge ableism: When you encounter prejudice, exclusion, or microaggressions, speak up.

Take part in events: Look out for Disability Pride parades, talks, art exhibitions, or workshops in your local area.

Beyond July

While July is an important focal point, Disability Pride isn’t just for one month of the year. The work of creating an inclusive and accessible UK, and celebrating disabled lives, continues all year round.

Right now, disabled people are fighting the UK government around changes to PIP (Personal Independence Payment) and support. We need allies to fight alongside us, to share the posts to raise awareness on social media, to write to your MP, to shout up alongside disabled people. Accessibility improves life for everyone, not just disabled people.

Final Thoughts

Disability Pride Month in the UK is about more than just awareness, it’s about empowerment. It’s about rejecting outdated narratives of pity or inspiration and embracing disabled people as valued members of society with agency, creativity, and rights.

As we celebrate this month, let’s commit to listening, learning, and making changes that ensure disabled people can thrive, not just in July, but every day.

The Big Move and Life Updates

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Life has been so busy with illness, work and the Big Move and so I thought I would update you all on what is going on here! If you follow me on Instagram or Facebook, you may have seen the updates, but we have moved from Sheffield where I was born and spent all my life and run away to the seaside!

Timm and I are planners, we always have a forward plan and about 12 years ago we started our 10 year plan that when all our kids reached adulthood and we weren’t tied to a certain place for schools and colleges, then we would make a house move to somewhere different, either the countryside or the coast. Covid was something that put a few blocks in the road but then after our youngest moved out, we put the house on the market and started searching all over the UK for the perfect place for us. From Scotland, all through England and all over Wales, we spent about a year looking for the right place, we wanted to be open-minded and know that we had looked all over. We set our hearts on a few houses, putting in offers and missing out, but we did figure out that we really loved the Yorkshire coast and focussed in on a few areas.

One day, we had a few house visits booked in and Timm threw in a last minute house to visit, on paper, it really didn’t tick the boxes for me but we had agreed to be open-minded so booked a viewing as it was close by. And obviously, it turned out to be the one! From the moment we walked in, it felt like home and when we came out to the garden, we both completely fell in love!

After months of stress with selling our house due to the chain, after living in boxes for two months after our moving date suddenly halted with three days notice, we finally moved house in November 2024, we packed our whole lives up and ran away to the seaside! We now live in a beautiful village, one mile from the coast in an old cottage with an acre of garden and we love it.

two people sat in hammocks

In that time, our middle child Ellie moved to Australia for a year, she headed off to the other side of the world. Our youngest Robin, started university in Manchester and our eldest Charlie actually ended up moving home, though Charlie has plans to travel and move out this year, and Robin is home for the summer.

We have had our dog Lemmy for ten years, he is a gorgeous Chihuahua and we adopted another dog Freddie (Mercury) last year, he is a year old now and a Border Collie cross, he is a wild teenager who has separation anxiety and has had a few owners who gave him up before us, he had a sad start to life but we are loving having him in our family. He has some issues and we are about to start seeing a dog trainer to help us to help him.

We also adopted a new cat after our old cat Mia passed away last year at the age of 13, we went to the local cat rescue and a big softy of a cat called Big Max chose us, he is a big ball of grey and white fluff with one eye who had been passed over a lot as people didn’t want an ‘imperfect’ cat. Obviously I fell in love and he is now happily in the family, he loves sleeping on the windowsill watching the people walk by and exploring in the garden climbing trees.

And then come the birds! We adopted five chickens from a place that rescues chickens from slaughter, mainstream egg production gets rid of the laying chickens at around 18 months old and so now they have a new lease of life in the garden, they came to us half bald, thin, miserable and nervous. After just a month, they are growing back feathers, getting fat and have learnt to play! We also have had a go at raising poultry from eggs and we now have chicks and Runner Ducks. We are also growing our own vegetables and fruit and have a greenhouse. We are building a beautiful little retreat/holiday glamping at the bottom of our garden, if you are interested you can have a look at Rock and Roam.

I left my job at the end of May, I had been struggling with changes and work was really affecting my mental health, I was signed off by my GP with discussion of Post ICU syndrome or Post Sepsis Syndrome that was triggering my anxiety and cPTSD. I don’t want to go into the details but I had to make a decision that was right for my mental health and my moral code and decided to walk away.

I am working on myself, awaiting some psychotherapy through the NHS, on medication and really healing myself and my past traumas. This is difficult and trying, but I know I need to heal. There has been so much going on in my life with living with chronic pain and dealing with the past surgeries and complications. There have been many traumas in my life, most of which I have squashed down and bottom drawered, this is unhealthy and I need to unpack these things and work through them in a healthier way than I ever have done.

I am feeling positive though. I am using this time to heal but also to grow, I am writing again, which feels incredibly tough but cleansing, I have missed the act of writing but I have felt so broken and small that I couldn’t get the words out of my head onto paper. But I know I need to allow myself to express the pains, the struggles and the joys of life in a way that has always been so helpful to me.

I am creating. I have begun a project called Masking/Unmasking; a group project with workshops on the act of masking as a disabled or neurodivergent person where people come together to share their experiences and then express those feelings through creativity and producing their own masks. I will write more about this soon, but I am feeling incredibly positive about it all and have 20 people who are participating in this first round in the coming weeks. Having people believe in me and my vision is bringing joy and building my confidence.

Sam Cleasby's face close up covered in paint with the text reading Masking/Unmasking

Timm and I are loving being in the countryside and by the coast, we adore our garden and our favourite place is in side by side hammocks under the trees and by the chicken and duck run. We are both working on creative projects and building the holiday home, and building our new future here in our forever home. We have never felt settled before, we also knew that there would be a next house and a next step. We have moved house seven times in our lives together, each one a small step towards our end goal and now we are here and we made it! We share some of our joys on an instagram account called The Cleasby Life, so feel free to take a peek!

We are both volunteering for the RNLI, Timm as lifeboat crew which is so brave and inspiring to me and myself in a much smaller way of helping with marketing and social media. Timm is also helping with event planning. Volunteering has always been an important part of my life, giving something back and doing good in the world is very good for the soul and so Im happy we have found a new project that brings us both a lot of pride in being part of something special.

I turned 44 this month and I know that this is the year I want to improve myself, work through all the trauma and heal and learn to cope better with anxiety and depression. I need to be kinder to myself. I need to deal with the feelings of not being good enough, of being a burden, of not being worthy of love. That’s Big, but I know I can learn. I know I can take it a tiny step at a time and as the antidepressants lift my mood out of the black hole, I am grasping that and using it to learn self-love, self-respect and self-worth. I am healing myself with medication, therapy, nature, creativity and honesty, learning how to communicate in a better way and though none of this is easy, I know it is the right thing to do.

As my love of writing returns, I really hope to share more here, but when it is too much, I put a lot of instagram, so that’s a good place to try and catch me. Thank you for your ongoing support!

Peace and Love

Sam xx

The Best Seats of the Show

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There are six seats across the middle section of the front row of the auditorium. Our seats are the middle two, the front, middle two seats, the best seats of the show.

At Christmas, I had opened the envelope with trepidation, it was slim and light and not a real envelope but an A4 sheet of paper, origami’d into the rough shape of an envelope and sealed with a piece of sellotape that bears the thumb print of my husband. I imagined the tip of his tongue poking through his lips, the gesture he does unconsciously when he concentrates, as he formed the package and tore a strip of tape to hold it all in place. It say Mrs C on the front in blue biro ink and he hands it to me on Christmas morning as we sit in our pyjamas with plates of reheated croissants on the coffee table and glasses of Bucks Fizz in our hands.

Inside is a sheet of paper with the home-printed tickets and the performer’s masked face looking out at me. Tickets for a live recording of the Blindboy podcast in June the following year, just after my birthday. I make a yipping noise and smile a real smile with teeth and a little too much gum as I excitedly lean over and kiss him in gratitude of the very much wanted gift. I had been hinting. Well, the type of hinting you do to a neurodivergent person, of sending links to the ticketing website saying “I’d love to go to this”.

We decided a few years ago, that we like to get experiences rather than things for gifts. When you have been together for nigh on 27 years and have a reasonable income, your children are adults and need you less and if you really want something, you buy it yourself, buying physical gifts becomes quite difficult. Neither of us are bothered about fancy stuff, we love a charity shop or a car boot sale, we like to make do and mend and find joy in saving stuff from landfill. We moved to a village last year and within six months became known as the Wombles, as we will take in any junk people are getting rid of. And by junk, I mean treasure. No, of course you shouldn’t put those original church tiles in a skip! Drop them on our drive and we’ll find a purpose for them. You have an old pond liner? Well, we better build a pond hadn’t we! Since moving here, we have been gifted greenhouses, sheds, paving slabs, wood and books that villagers would rather drop on our doorstep than drive to a charity shop.

We decided that we get more pleasure from ‘doing’ something, than ‘owning’ something and so gig tickets, podcasts, plays, days out, afternoon teas and similar jaunts have become the norm for gift buying between us. I found the Blindboy podcast accidentally a few years ago, sometimes I fall into a Spotify hole of clicking the ‘More Like This’ button. My usual podcast go to’s are true crime and so I wonder how many clicks it took to bring the soft, Limerick drawl into my earholes that made me pause. He was talking about a “mental health plan for when the news is overwhelming’ and his opening gambit was asking ‘What’s the craic, you anaemic queavers?’ As the faint piano notes play in the background, this gentle voice spoke to me about these Big topics with beautiful profanity and poetic truths and I was hooked.

So the day has arrived. We travel an hour to the city and spend the day as tourists, something you rarely do in your own home town. We looked up, admired the shapes of the buildings and the signage of old, we paid £10 for two 99s, we meandered around the town centre like the pigeons that were everywhere and watched a man who had a huge owl on one of those gauntlet type gloves entertain two young boys who shouted with glee when he showed them the pellet of desiccated bone and fur that the owl had hacked up earlier that day. I notice more detail that I do at home, but I also seem to notice more detail that many people around me in general. My mental health is shot, drowning somewhere between cPTSD and anxiety, I am Working On Myself. Therapy and drugs and thinking and looking inwards and being a detective into the details of my life that we often push deep down into a big bottom drawer that we have to put our foot on to shove all the stuff down and be able to squeeze it shut again.

I have learnt that I am an introverted extrovert. I love a stage. I love to speak. I had a radio show, I interview people, I do public speaking. I am ‘showy’, I dress like a cross between a pensioner who no longer gives a fuck and a toddler who is attracted to bright primary colours, stripes and spots. I write about my inner most thoughts and put them on the internet. I take photos and videos of myself. I laugh loudly. I sing to myself in the supermarket. I love being on a stage. I am an artist. I am an extrovert.

But I also have crippling social anxiety. Put me on a stage and I will gladly regale you with stories and laughter and intrigue and heart, I’ll laugh with you and cry with you. Put me in a social situation and my chest pounds, my jaw clenches. I become awkward and clumsy. I will say the wrong thing and then point out that I said the wrong thing and make everyone feel more awkward that I said the wrong thing and then cringe into my own soul as this cycles into horrific silence. I will be the one who trips over or breaks the glass. Who tries to be the fun person I am on stage but then speak too loud as if I am projecting to the back of the room rather than speaking to your aunty in a small backroom of a pub.

My mind whirs with remembering How To People. Should I speak now as there is a silence? Oh no, their face has frozen as I tell them that I read about Wombat’s arses and how they are so tough that they can break a fox’s neck. That was not the right topic. I should smile, they are now smiling. But in 1989, someone told me my smile had too much gum in it and now when I look at photos of me, there is a lot of gum and I sometimes look a bit deranged, so I should do a moderate smile, one with less teeth and gum. She is smiling with her mouth closed, I’ll try that. Timm looks at me, his brow is furrowed, he leans over and whispers “Are you in pain?” “No”, I say, “I’m doing a Moderate Smile”. “We’ve talked about this Sam” he whispers back, “it’s fucking weird, just smile, you have a lovely smile, or don’t smile! But stop with that weird face.” I nod, solemnly, he nods back. Then I am quiet and thinking about how nodding is a weird thing. Why does up and down mean yes, and side to side mean no?

We arrive at the venue and headed to the seats. Our seats are the middle two, the front, middle two seats, the best seats of the show. I can’t believe it, this is very exciting. We sit down and I start thinking about how Blindboy might see me and think to himself that I look quite fun and then we become best friends and he will call me and say ‘What’s the craic you heaven sent Kevin?’ and then we will talk about the smell of rain and the birds whose call sounds like two marbles clacking together. Timm and I take a photo of ourselves, I share it on instagram, congratulating him for getting us the best seats of the show. He is drinking a lager shandy and I am drinking a pint of lager, they cost £16.50 and I am working out how much each drink must have cost.

Four people arrive. They do that thing of looking at their seat numbers and counting the seats. I am dividing £16.50 but then wondering the difference in cost for half lager, half lemonade versus a full lager. “Oh no!” they say, “our seats are split!” we look up and I wonder how they ever thought that 18 and 19 could be next to 22 and 23. We awkwardly smile and they stand in front of us staring, shuffling and waiting. The guy tells us that they are all together so can we just switch seats so they can all sit together? It’s no big deal! My eyes shoot down, I don’t want to move, these are the best seats in the show. But I am a people pleaser and cannot stand the awkwardness, I know I’m about to blurt out that it’s fine and then feel sad about this series of events that mean I now have slightly worse seats. Timm speaks up. “No, sorry pal, she is very excited about being in these seats.” They stare and then split apart and sit either side of us. The man says that there is a monitor right in front of him now. I stare at the ground.

My ears are full of the sound of blood going in and out of my heart, I feel hot and shrink back into my seat and the two couple speak across us. I feel small and mortified and question if we are in the wrong. Should we have just moved? It’s not that big a deal is it? I know if it were any other seats I would have moved. But these are the best seats in the show. And I don’t want to sit behind that monitor. And it’s fine, they bought those seats knowing. And we bought these seats. And it’s not even sold out, so they could have bought other seats all together. And Timm must have been first on the website to buy these seats. That’s so nice to know. And we’ve had a shocking few years with my health. And I am in a lot of pain. And Im using my walking cane today. And they are sat down now. And this is all in my head. And they probably just were chancing it. They probably don’t hate me. Unless they do. And maybe they are fuming. And maybe I just ruined their night. Am I being selfish? I’m not being selfish. This is OK. This is awful. This is fine. This is terrible.

My brain is full.

But I am Working On Myself remember. So I can CBT the shit out of this. I know I could easily tumble into this whirlwind of self doubt and insecurity and anxiety and sit in the audience of my favourite podcaster and not hear his words as they are drowned out by my inner demons. But I also know I have the ability to recognise this and stop myself. I whisper to Timm that it’s so awkward, that I am mortified and that I could ruin this for myself. He whispers back “let it go, leave it behind.”

He tells me to leave it behind when my trauma is so large and heavy that I carry it with me like a terrible one woman moving van, stacks of dishes in my hands as I balance an armchair on my back and loop plastic bags of crap up my arms so heavy that they cut into my skin, the sharpness of the sliced flesh only outweighed by the man sat on the armchair shouting down at me with a megaphone that I am a useless burden. And when Timm sees those moments reflecting in my eyes like a slideshow, he tells me to leave it behind. It’s three words that reset me, that remind me that I have control of this, this doesn’t have control of me. He knows me better than any human in the world and I believe him when he tells me to let it go and leave it behind.

I take a deep breath, I shake my shoulders, flicking off the obsessive overthinking like a cow whips flies away from it’s arsehole. I look at the people. They are not some terrible overlords who demand me to bow down and shuffle away like a serf, they are just two couples who thought they’d chance an ask in a polite way to see if they could sit together. They aren’t the cause of my internal meltdown, I am. My brain feels as though it fizzes, and that fizziness works for me a lot of the time. It allows me creative thoughts, it helps me plan projects and make art. It’s whirliness makes me who I am. But it also has a dark side that makes me hurt.

When we feel anger or hurt, we project that onto others and I have to learn to accept my role in this is the only role that I have any control of. This story could have been a complaint about the people who ‘ruined my night by making us move’. It isn’t the story. The story is of a woman who is Working on herself and learning that the big bottom drawer is bursting open. That 44 years of ‘stuff’ is bursting out of the drawer, it can’t take anymore as it is full to the brim. I have two choices. I can build another drawer, maybe a big chest type one with a sturdy padlock. Or I start to unpack it. Piece by piece. Item by item. Pain by pain.

I choose that option.

I shared this as a spoke word piece over on instagram, so you can check that out here:

View this post on Instagram

A post shared by Sam Cleasby (@sobadass_sam)

When you are brave, good things can happen…

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A month ago, I did something brave, though at the time it felt stupid, scary and incredibly vulnerable. I wrote a post on Linked In that I then shared on my social media about my struggles with disability and work. I had been applying for jobs for over a year and had applied for hundreds of roles, many I would not even get an interview for, and those that I did interview, I did not get. I was feeling beaten, I knew I had great skills and brilliant experience but it felt like when I clicked that box that said I was a disabled person and that I would need some reasonable adjustments including some remote working that I was struck to the bottom of the pile.

Here is the post:

This feels a little embarrassing but as I advise my adult children, never be ashamed to put yourself out there! So here I go…

I am a disabled woman and I have been applying for jobs for over a year now with no success. I’m not sure if it’s because I need reasonable adjustments such as hybrid or remote working or whether saying I’m disabled on applications puts people off. Ive applied for over 100 jobs and struggle to even get an interview.

I have three adult children (who are all incredible so if raising good, kind, helpful and caring adults counts on your CV, then let’s add this on!)

I have a first class degree in Fine Art that I completed at the age of 42 and I am currently doing a MSc in Disability Studies.

I’m a creative person, I am a textile artist and also work with recycled, found and natural materials. I have run art workshops all over the country.

I worked for disability charity Scope for three years as Senior Online Community Officer, helping to run their online community, create blogs and supported the social media team, I created the newsletter that went out to 100,000 members and managed a large team of volunteers.

I have been a disability advocate for 11 years, I created a blog that’s had over 3 million views and I have done talks about disability all over the UK and Europe. I’ve been on This Morning, BBC breakfast and lots of other TV and radio appearances and in newspapers and magazines worldwide.

I had my own radio show on BBC Sheffield – Nowt so strange as folk – for two and a half years. Starting on midweek evening and moving to prime time Saturday mid morning slots.

I was a freelance writer for medical publications, Red Magazine, Psychologies magazine and the Metro and I’ve had my work published in academic texts.

I run a photography studio with my husband, and handle the studio hires and admin for the business and I am doing some disability accessibility consultation and coordination for large scale sports events and music festivals.

I’ve had a few other jobs such as a doula, a massage therapist (including working backstage at festivals and events for artists) and a breastfeeding support worker.

Phew! That’s a long list so thank you if you got through it!

I am a creative who loves helping people, I have a varied career history and I always commit myself fully to my work.

Some people may think that my impairments make me a poor candidate for work, but I honestly think it is a benefit. I have to be super adaptable, I can think outside the box and can respond to problems, I’m hard working and I’m empathetic and caring.

If you are looking for intelligent, hard working, badass staff, then get in touch!

Please don’t overlook disabled candidates, you may miss out on the best staff you could ever hope for!

I hit send and felt my face go red, I got a blotchy neck and the shame of vulnerability punched me in the face. It took everything I had to not immediately delete the post but I stood strong when I started getting responses that said that others had been in this position, that employment as a disabled person was so tough and that people were grateful that the conversation was being had and so I left it up.

Sam Cleasby disabled woman at work, disability and work

A while later I got a message from a woman who runs a business, she said she loved my post and was I free for a chat? I jumped onto a video call with her and we both talked for an hour about life with chronic illness, the difficulties of employment and about how she saw a gap in support for disabled people and created a business to fill it. She was passionate, ethical and I truly believed in what she was doing. We had a few more meetings and I am absolutely over the moon to tell you all that I GOT A JOB!!!

I am now the marketing manager for an incredible company called Purpl Discounts. The UK’s first dedicated disabled discount site to help offset the cost of living with a disability.

Purpl offers exclusive discounts and partners with various brands to provide members with savings on everyday products and services. The founder is disabled and understands how expensive it is, so their mission is to help you save money as well as being committed to giving money back to disabled focused charities. Purpl is designed specifically for individuals with disabilities.

I’d love you all to head over and have a look, it is free to join, you need to register and provide proof of disability through a simple verification process. There are a number of government and council documents we can accept as well as other disability ID cards, government-issued disability benefits letters, medical certificates, or other official proof of disability and as a member you can get access to huge discounts and deals in tons of areas.

Purpl discounts, a website that is the uk's first dedicated disabled discount site to help offset the cost of living with a disability

I knew that I had to work in a business that aligns with my passions and morals and I really think I have found it in Purpl. It has been a long slog to get here with so many disappointments, but now I am over the moon and absolutely thrilled to be starting work with such an incredible company. They recognise that disability and work can go hand in hand and that flexible and remote working can allow you to work with the best candidates for the job!

It is hard when you feel that no matter what you do, you get turned down. Believe me, the past couple of years have absolutely kicked me in the butt, there were times when I felt that I was cursed as nothing was going right. But even time, I dusted myself down and started again, I just kept swimming. Posting about my work situation was terrifying, I hated feeling so vulnerable but I still had hope and this has shown me that when you are brave, good things can happen…

Peace and love

Sam xx

World Ostomy Day!

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Happy World Ostomy Day!

My ostomy journey began in September 2013 and it really has been a journey, there have been times where I hated it, when I cried and despised the thing. But most of the time, I have felt relief, relief that this ostomy of mine saved my life, that it gave me back freedom, gave me a life, allowed me to travel the world and play with my children. My ostomy allowed me to become a better wife, mother, friend.

For the 9 years before that since I was diagnosed with Ulcerative Colitis (though to be honest, I truly believe that I have had UC from being a very young child) I lived a life in the bathroom. During flare ups, I would go to the toilet 20-30 times a day, I would poo myself regularly and be in agony feeling like barbed wire was being pulled through my guts. So when I finally had my large bowel removed and my ileostomy formed, I was happy and relieved.

Yes, it has caused me lots of other issues, and sometimes it is hard to live with. I sometimes leak, I have had multiple hernias, had to have abdominal reconstruction, there have been so many side effects to the many major surgeries I have had. But my ostomy has saved my life and I am grateful.

So on World Ostomy Day, I thought today I would share a collection of photos of me from over the past 11 years.

Sam Cleasby is a woman of British and Indian descent, she is laid on a sun lounger in a bikini and has an ileostomy bag on her stomach, she is smiling and relaxed
Sam Cleasby is a woman of British and Indian descent, this is a black and white image of a woman with an ostomy bag
Sam Cleasby is a woman of British and Indian descent, she is standing outside by a stone wall in front of a field with a horse in to and wears a vest, skirt and cardigan, she is pulling up the vest to show an ostomy bag
A woman showing a stoma
Sam Cleasby is a woman of British and Indian descent, she is floating in a swimming pool and looks relaxed, she is wearing a bikini and has an ileostomy bag
Sam Cleasby is a woman of British and Indian descent, she is posing on a chaise longue with a cup of tea in underwear and has an ostomy bag, the vibe is very 50s pin up girl
Sam Cleasby is a woman of British and Indian descent, she is taking a mirror selfie in her underwear in a bathroom with make up pots and brushes around the sink, she has a big smile and is pointing at her ostomy bag
Sam Cleasby is a woman of British and Indian descent, she is jumping like a star fish into a swimming pool wearing a bikini and has an ostomy bag
Sam Cleasby is a woman of British and Indian descent, she is wearing a red and pink ethnic scarf around her like a dress and has her ostomy bag on show
Sam Cleasby is a woman of British and Indian descent, she has bright pink hair and is wearing an orange yellow and green Lucy and yak boiler suit, you can see her bra and her ostomy bag
Sam Cleasby is a woman of British and Indian descent, she is smiling on a beach holding a big sun hat on to stop it flying away, she wears a bikini and has an ostomy bag and hairy armpits
Sam Cleasby is a woman of British and Indian descent, she has bright pink hair and is on a boat in Lanzarote, she is wearing shorts, bikini top and a floaty cardigan and you can see her stomach is scarred and has an ostomy bag
Sam Cleasby is a woman of British and Indian descent, she is standing proudly on a beach in Croatia wearing a leopard print bikini, she has lots of scars on her stomach and a Coloplast ostomy bag
a montage of two photos, in the first Sam Cleasby, a woman of British and Indian descent, lies in intensive care, she is covered in tubes and machines and looks very unwell. The second image shows her laying in a similar position, but she is floating in a pool wearing a bikini and looking very relaxed and calm, she has an ostomy bag
Sam Cleasby is a woman of British and Indian descent, she is posing like a 50s pin up in underwear showing her ostomy bag

Peace and loce

Sam xx

I graduated!

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Last year, I graduated with a First Class degree with Honours in Fine Art from Sheffield Hallam University!

I had my first baby when I was 19, I’d had a tough few years and university wasn’t on the cards before I got pregnant, but once I was becoming a mother, I knew further education would be a long way down the line, if ever! (Obviously for lots of people they parent and study side by side and bloody well done to them, it just wasn’t for me!) I then had two more babies and focused on being a mum.

As the kids grew older, I had various weird and wonderful jobs. (I will do a post about my varied career or you can have a peek at a post I did recently on linked in about the difficulty in finding work as a disabled woman) I never thought university could be an option for me, I had left school with decent GCSE’s but then attempted college and A-levels twice, leaving each time as I was unhoused and its hard to study when you’re not sure where you are sleeping. But as life moved on, I was happy, I was working and life felt good, I had a job working for Scope, the disability charity, that I LOVED and I also had my own radio show on BBC Radio Sheffield.

Then in early 2020, I was facing another major surgery, it was a big one and would need a long recovery, I made the decision to leave Scope and headed into hospital. I was incredibly unwell after the op, my kidneys failed and I was in and out of hospital. I planned to start working for my husband Timm and our photography studio, working as studio manager. Then as we all know, Covid hit. I was classed as clinically vulnerable and very scared, and then the BBC decided to cull all double headed shows to reduce the risks for people working in the studios. The photography studio had to close down and suddenly, I had no job at all and was scared to leave the house!

One day during the long lockdowns, I said to Timm “If I won the lottery, I would go to university”, he laughed and asked what I would study, I told him Fine Art and he asked why would we need a lottery win to do that, I ventured that I couldn’t not work and bring in money and that university seemed like a luxury. He thought for a while and then said that we had no work, that the world was closed down and we had no idea what life would bring us, that we had learnt that life can be cut short and we need to seize the day! Within a week, I had enrolled on my course to start (online) a few weeks later! I had enough life skills and experience to overcome the lack of A-levels and I was heading for art school! Not long after, Timm decided to enrol too and he would begin a Film Production degree at the same time. We applied for student finance and away we went!

Though it was tough heading into education after so many years and being 39 when I started and one of the oldest people on my course, I loved it. I adored learning, reading, exploring and discovering. Creating and making and thinking outside the box was a joy. And though there were times where I worried I wasn’t good enough, after three years and meeting some of the greatest people, after three years I graduated with a first class degree with honours.

In my third year, I started the year strong, with great ideas of my final exhibition. All my art practice had been around accessibility, I had created photography projects around the feeling of being bound and trapped by chronic illness, I had exhibitions of my work highlighting the inaccessibility of hanging heights in galleries and my third year project was to look at the art spaces I could not enter in a wheelchair. But it wasn’t to be.

I began to feel quite unwell, I was in a lot of pain and unable to eat much. I lost two stone in 6 weeks and ended up in hospital, my bowel was trapped in a hernia and I couldnt digest food, I was malnourished and starving to death. I was admitted to hospital in November and put on a PICC line and TPN feeding, where nutrition goes straight into the arteries around the heart and bypasses the stomach and bowel, this was for a month until I was strong enough to survive a surgery to fix the trapped bowel and hernia. I have written about this on another blog and so I won’t go into too much detail, but that surgery did not go well and after being taken back to the ward, my bowel perforated and I developed Sepsis. I was rushed back into surgery and woke up days later in ICU after having been placed in a coma. I was in hospital for another month after that, spending Christmas and new year in hospital, I came home in January, two months after I was admitted.

I came home with a PICC line and needed daily IV antibiotics to counter the sepsis and infections raging in my body. I felt incredible unwell all the time, I had lost another stone and a half and had massive muscle wastage, I could barely stand. My PICC line and daily antibiotics carried on for another 4 or 5 months, life was the inside of my bedroom.

During this time, my tutors told me I could repeat the year, that it was no problem and to rest and recover. But I knew that I needed something to keep me going, I had my incredible husband, kids and friends of course, but I needed something that was MINE and mine alone. And so I kept up studying, kept making art, kept my brain active, my amazing tutor would FaceTime me in hospital, all the while reminding me to take it easy and take my time, but respecting my decision to keep working. I wrote a little about support for disabled students and DSA on a blog here.

Obviously my original plans, that included large scale sculptures, performance art and film were out of the question. So I worked with what I had.

I looked around my hospital bed, in a private room I was kept separate due to getting a hospital acquired infection, anyone who entered the room had to wear full PPE, a gown, mask, gloves and face screen. I had very little to work with! I had six drains in my body, they were kept in for so long, taken out, replaced, more added, some taken away. I had my stoma bag, I had NG tube and so many wires and tubes in and out of my skin and body, I had the PICC line that had kept me alive for months. And I became intrigued by the array of colours that were coming out of my body. You think it’s just blood, piss and shit, but then these drains were pulling crazy coloured fluids from me, the NG tube spouted bright green/yellow bile, the colours were both disgusting, but also beautiful. And so I photographed the bags of coloured fluids, thinking of them as artists medium. Don’t worry, I wasn’t going to paint with them! But I did get a Nix colour sensor so I could find out more about these colours, and from there I created some colour palette art works of the colours of my body and named them Samtones.

I also created a diary out of the small paper cups that my pills were delivered to my bedside in every day, the words and images that filled my head were squirrelled away into these disposable cups that I flattened and made into a book.

I wrote my Manual for Practice, the several thousand words about my art practice, academia and theory behind my work, handed it all in, hung my exhibition, crossed my fingers and hoped for the best!

And last year I did it! I graduated!

Not one second of it came easy, I had to work my arse off for this, I fought so hard to keep going through incredible pain and fear, through being bed bound for months, through foggy heads and drugged up brains, I read, I wrote, I created and I did it. I got my degree. First Class with honours in Fine Art! With Timm and all my bambinos by my side!!

And the icing on the cake was that Timm completed his Film degree despite being a full time carer, having to learn how to give IV meds, visiting me in hospital for 12 hours a day, having to work, care for the house, kids and pets and do it all alone! He got a First class degree with honours in Film Production and I couldn’t be prouder of of both.

Never give up on your dreams, just keep swimming and fight for what you want in life!

Peace and love

Sam x

Well, hello again!

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It has yet again been quite a while since I ventured onto here to write to you guys. I have stayed fairly active on Facebook and Instagram so thank you to everyone who has kept up with me on other platforms. As you may know, I started this blog over 11 years ago now, and it has been a lifeline for me, a cathartic space to share my health journey. But it also, at times, became a weight to carry. There have been times where I have felt so overwhelmed in life that I just haven’t had the head space to think about writing and blogging. Life has been tough, I have had so many set backs and hardships and so I knew I needed to give myself space from here. But as with any good home, I knew I would return some day and perhaps now is the time.

Sam Cleasby blogger stoma ostomy IBD

I will try and blog over the next few days to catch up on the past year or so and all the things that I have been up to, the health woes, the medications and treatments, but also the joys. I graduated university with a First last year even though I spent almost my full third year either in hospital or in bed and I had three surgeries! I became an empty nester as all my bambinos left home (though we have our daughter back with us for a couple of months right now), I started a Masters in Disability Studies, travelled to Australia, Croatia, Fuerta Ventura and all around the UK, got a new dog, appeared on Come Dine With Me and the big news is that we are moving house very soon and heading to the seaside for a better quality of life by the sea.

So thanks to anyone who is reading this, I will continue to update, but it feels good to say hello again and I look forward to being So Bad Ass again!

Peace and Love

Sam x

Swimming with a stoma

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I did a little film last year with Clinimed about swimming with a stoma. It is one of the most common questions I get asked, “Can I still swim with a stoma?” (that and questions about sex…)

The answer is that you can swim with a stoma unless your doctor or medical professional has told you can’t. But there is no reason that you can’t swim once you have to wear an ileostomy or colostomy bag. They are waterproof, they are sticky and won’t just fall off in the water, you can have it on show or cover it up with a swimsuit or swim vest and no-one will know unless you tell them.

I have always loved the water and since having my stoma, I have swum in pools, seas, rivers, lakes and anywhere else I can find to have a dip. I have been to spas and gone in jacuzzis and steam rooms, and never once in ten years has my bag fallen off or leaked in the water.

Have a watch of the video and hear me talking about my own experiences and also the Aura Plus ileostomy bag. You can also see some cool drone footage of me wild swimming and loving it!

This was a paid video, but all opinions and reviews are my honest opinions. I only work with companies that I use personally and that I believe are trusted sources of support.

Enjoy!

Sam xx