When you are brave, good things can happen…

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!

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!

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!

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

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

Oh hi! It’s been a while!

Hello everyone, I know it has been a very long time since I wrote a new post on here. I have started so many times, there are many sat in my drafts folder that I just couldn’t hit post on. I am going to try again and attempt to explain a little of what has been going on.

Firstly, let me just say thank you to everyone who has kept up with me on Facebook and Instagram, also to the many people who still are reading my old posts here. Also a big thank you to the people I meet in real lift who read my posts and have such lovely comments.

So, what has been going on and why have I not been blogging for the past year…

In February 2020 I had a big surgery and things didn’t go too well. There were lots of issues post op and then I ended up with an Acute Kidney Injury and my kidneys were failing. You can read about it in the link above, we then went into lockdown when Covid hit and the world turned upside down. I posted a little about it here

“I feel so lost at the minute. This time last year I had a job I loved, I had my own radio show on the BBC, I was blogging and I thought my surgery had been successful and the future felt bright. Right now I’m recovering from 9th surgery. I have no job, the radio show has been put on hold due to corona and I just feel like I dont even know who I am any more. The one thing I’ve always loved is writing. But I have lost my confidence even with that. I try to blog and just stare at the screen. I just have lost it. “

April 2020

We trawled our way through Covid, I started therapy after being diagnosed with PTSD and though it helped, it also brought up a lot of past trauma. I tried to do what I have always done, write about it, explore those feelings, try and figure out what I was going through and how I could make it better. I spoke about family matters, and I was thoroughly told off and judged for doing this. I can see in hindsight that it felt too personal and upsetting, and that it wasn’t the right call, but the backlash was quite awful. This really effected me during a time where I was going through PTSD and so much trauma and it made me scared to write.

My health didn’t improve after the 2020 surgery, and in November last year I was admitted to hospital. I had been in agony for months and it had gotten to the point where I couldn’t eat, I lost two stone in 6 weeks and it turned out my intestine had moved into the hernia and got trapped. I was admitted to hospital and put on TPN as I was malnourished and though I needed surgery, my body was too weak to cope. After four weeks in hospital on TPN and other medication and treatment, I had surgery at the beginning of December 2022, it was a big surgery to try and fix the hernia and another full abdominal reconstruction. I woke after a 7 hour surgery and immediately didn’t feel ‘right’, I was in agony and having chest pains, I didn’t feel well but I had no idea what was to come.

The staff were incredible. And they soon realised that my bowel had perforated after the surgery, it was leaking into my body and I had developed Sepsis. A team suddenly was surrounding my bed, they were explaining to Timm and I what had happened and that they needed to take me immediately into emergency surgery. I was already exhausted, in pain and not really with it, I just remember there being so many people and I had to go there and then, I asked them “Am I going to die?” He said “We are going to do everything we can, but you are very poorly, you need to say your goodbyes”. Shit got serious. They wheeled me away and Timm kissed my head, we said I love you and the doors closed behind me leaving him stood in the corridor.

I woke up days later in Intensive Care. They had managed to fix my bowel but had put me into a medically induced coma, I was sedated and had a breathing tube in my throat. I had machines and tubes and wires attached to every part of my body keeping me alive. It was terrifying. Timm was sat by my bed, he looked like he had aged ten years since I saw him last. That whole time is a blur and honestly, this is the most I can manage to talk about right now. It was hell. It was the worst days of my life, and probably the worst of Timm’s.

Eventually I was moved from ICU onto a ward where they were still battling to fight the Sepsis, I was still on TPN and having multiple antibiotics every day to try and get on top of the infections. I couldn’t get out of bed, I had 6 drains in my tummy and so many tubes and bags, I couldn’t even sit up without help. I then caught flu and a hospital acquired infection called VRE (Vancomycin-resistant Enterococci). I was moved into a private room and everyone who came in had to wear apron, mask and gloves. At a time when I needed contact, I had never felt so lonely. Then Timm caught Covid and couldn’t visit at all.

It is incredibly hard to write about this. I can’t go into details, it is just too hard. I am shaking and feel sick just writing this, I think I have just tried to forget it all. I was finally allowed home in January, eight weeks after I had first walked through the doors, eight weeks of being an inpatient. Eight weeks. I had been allowed day leave on Christmas Day. I came home to Timm and my babies. But honestly, I barely remember it, I slept through most of the day and I cry every time I think about Christmas now. That is all I can say.

I came home, but I still had so many infections. I had to go to hospital every day for IV antibiotics through my PICC line. Timm then learnt how to administer them so that I could stay at home, as every day was agony getting to and from the hospital and it wiped me out for the full day. So then he gave them to me every day at home and we only had to go in once a week for blood tests and to collect the next weeks meds, syringes and all the stuff that goes with it. We did this every day till the end of April.

In April I had to have another surgery. The mesh in my tummy was the cause of the infections that we couldn’t shift with antibiotics and so they removed it. I had another couple of weeks of IV antibiotics and then eventually in (I think) the beginning of May, they removed my PICC line finally and I went onto tablet antibiotics.

Since then, I have been healing. Physically healing, but mentally and emotionally I think it is all blocked up in there. This is the first time I have tried to even lay out the timeline and go through the hell of the past 8 months. I am not ok. Timm has been through hell and back watching it and being there for me. He has done everything. He is everything.

It is times like this where all the shit in the world has hit every fan in the world that you take stock, you are grateful for the love and support of friends and family. It is the time where you realise who is there for you. I am so lucky to have an amazing husband who was there every damn step of the way, to have friends who were incredible, who looked after my kids, fed my family, was a support system for them when I couldn’t be there, who called and text, who visited and listened and loved and were just there. My sister in Australia called and messaged constantly, she was my night shift. My aunties who visited me and the kids, who cooked for them and brought gifts. Our friends who send weekly videos of their babies to make me smile. Friends who were just there and were amazing. Timm and I are so lucky to have so much love in our lives.

It has been the toughest year of our lives. But we have come through it.

Let me tell you about some nice things though, so its not all doom and gloom. Timm and I graduated this year, how on earth we managed to get through our final year when all this was going on, I have no idea! I think it just gave us something else to focus on, something other than medical crap and hospitals, something that brought us joy. I made all my work in hospital and used the experience to create my final exhibition. Ill post about that separate, but I only went and got a First class degree with honours in Fine Art!!! And Timm got the same in Film Production. We are both so proud of ourselves and each other!

This year has made us both focus in on who and what matters. On the people who love us and who we love. On the people who were there for us when we had nothing to give back. On what brings us joy. On how fragile life is. On what our future holds.

Mentally I feel like I have been in a tumble dryer, everything is so jumbled and staticky, I am anxious and low, I am masking so much and just shoving it in the bottom drawer, but man, that drawer is looking fit to burst. We are both a bit shell shocked I think and we need time and space and nurturing to resolve things and move forward together. I was offered and started therapy but honestly it was too much too soon. I had two sessions and it was hell, I couldn’t cope with it at that point. I am a huge advocate of therapy and highly recommend it, but it needs to be at the right time for you.

So why now? Why am I even writing this?

Well, I feel pretty empty right now, I have come through this trauma and survived, I have finished uni and so I feel like I should be on top of the world! But in reality, I still feel lost. I don’t know who I am or what I can do any more. I have lost so much confidence, I have been applying for so many jobs and it is a tough world out there now! I felt like this blog was done, that I can’t write anymore, that any spark of confidence I had in my writing had died. I felt I had nothing more to give.

Then I went to Tramlines festival this year, and I met a couple coming out of the accessible toilet. “Sam Cleasby?” she said. I panicked, thinking why don’t I recognise this woman?? She told me her husband had a stoma and they read this blog, she said lovely kind words and told me how much it had helped them. We hugged and said goodbye and I walked away feeling a bit dazed. I remembered why I started this blog and realised that it does still help people.

A week later I went to the Pain Clinic, after my appointment, the nurse said to me “Does your badge say So Bad Ass?” I looked down and realised it was on my old dungarees holding the strap together! She asked if I was the woman who wrote this blog and told me she had one of my posts (Letter to the tea lady) printed out and stuck on the wall of her desk to remind her to always remember the person behind the patient. I was gobsmacked.

And so it felt like the stars were aligning to tell me to get myself into gear and just jump back in and WRITE. So here I am.

I am going to try and write more. Though this has been truly difficult to write down, it has felt like slipping back into a comfy pair of slippers and I remember why I do it. I still have doubts and fears, the internet world can be a nasty place, with so many people wanting to write nasty, mean comments and messages. But there are so many others who are kind and lovely and who are struggling, so if I can write down some of the thoughts in my brain then maybe it will make it all feel a little better for both of us.

Thanks for reading and I am sending you all love and peace

Sam xx

Tramlines! Festivals and chronic illness

Tramlines is a Sheffield festival that is an amazing party in July each year. This year felt like the best one yet!

I got through on a bucket load of pain meds, my The Alinker UK, my Neo-Walk cane, very good friends and the brilliant access team. Festivals can feel like an unattainable mountain when you have a chronic illness. So I thought Id share a few of my top tips…

A woman sits on an alinker mobility aid posing with another woman at a festival in front of a sign that says I heart Sheff

Access Team

Get in touch with the festival access team asap to explain your needs and find out what support they have. I had a wrist band to use their many accessible loos, go on their viewing platforms and also just let them know I’d be bringing prescription meds (they even had a fridge if you need your meds to be kept at temp!) and I had my alinker and cane. I also got a PA pass for someone to be able to help me. Tramlines was awarded Gold Status by Attitude is Everything, a charity that improves deaf and disabled people’s access to live music. Search the website of the event or festival you are going to, to find out more about what they do for their access customers.

PA or Friend

Lots of festivals do a free ticket for you to bring a friend or PA with you. My friend Sarah helped me all weekend and I wouldn’t have managed to get through it all without her!

Know your limits

We’re all individual and have different needs. Know what your limits are, have a look on the website before and try to plan your day a bit. Who are your must see bands? What other activities are there onsite? My awesome friends Responsible Fishing UK were there stone balancing so I knew that was a bit of a chill out area that I could go and sit down at. Don’t beat yourself up if you have to arrive later or leave earlier, listen to your body x

Be prepared

Think about what you’ll need for a full day. For me it’s about how many ostomy bags do I need? What about a change of clothes if I leak? How much medication? Lots of festivals limit the size of bag you can bring in, but if you speak to the access team and explain what your needs are, they have to support you. If you’re at a festival with camping and will be away from home for a period of time, make sure you have more than you think you’ll need of your medical supplies! I once had a nightmare at Glastonbury when I just started to leak constantly and went through all my bags in a couple of days! I was saved by a kind stranger, you can read about it here!

You may no longer be a mosher!

Back in the day, I’d have been right down at the front for watching bands! Some of you may still be there! I am not! Viewing platforms are great sometimes, but honestly I prefer to just be further back in the crowd, you still get the audience atmosphere and there’s a bit more space! Personal preferences, but having a space where you can sit if you want, where your mobility aid has room and where you can get back and forth to toilets is the right choice for me!

Alcohol

If you drink alcohol just be aware of how it effects you. Can you drink on your meds? If you have a bag, do certain drinks make it fill up quicker? Don’t over do it, take care of yourself and be safe x

Medical needs

If there’s a medical need, festivals should have medical assistance onsite, though depending on the size of the event depends on how good it will be. Tramlines medical tent is like a little hospital!!! I can’t believe how much they have there! If you have a medical need onsite, ask someone for help and they’ll be able to show you where to go. For smaller needs, there should be a Welfare tent where staff can help. Don’t be afraid to ask.

disabled woman at a festival wearing a waterproof pink poncho and using a cane.

Have fun! (whether you make it or not!)

If you can make it to a festival, enjoy! Enjoy however you can manage, however makes you happy. If you can’t make it, then don’t beat yourself up. There was no way I’d have managed Glastonbury this year, we’ve been loads of times but I knew it was just too much for me this year. It happens and life goes on, have your sadness for a moment and then do some nice at home that you couldn’t possibly do at a festival! Gorge bubble bath watching Netflix and having a glass of fizz? Yes please!!!

Plan your journey

However well organised, getting tens of thousands of people off one site is always going to be busy! Planning your journey home is important. At Tramlines this year, the accessible parking was as close as they could get to the entrance but that did mean that you had to either leave a bit earlier or wait for roads to reopen. Not a massive deal for me but only because I planned for it, we just spent that time posting on Instagram, having a drink and chatting about our day. If using public transport be aware that it’s going to be BUSY! Planning ahead is key.


Festivals have always been an important part of my life, I love seeing live music, I love the vibrancy and sheer fun of them. I have taken my kids to festivals all their lives and have so many beautiful memories of them. After over twenty years of festivals all over the UK, as I become more poorly and have more mobility issues, I feared that perhaps I couldn’t manage them any more. But life is about adaptation, I may not do them in the same way as I used to, but I can still do the things that I love the most.

Tramlines is run by my husband, he has been part of the production team from the very beginning in 2009 and to see it grow into such an amazing, huge event is so heartwarming, I am immensely proud of everything he and his team have achieved! Some people say I get preferential treatment from this festival, but I go through their access team the same way as everyone else. The staff aim to treat everyone the same, to ensure access customers get any support they need to have an absolute blast and it’s important to me to go along as a normal guest so I can see how their team works and if there is anything they can improve on so I can feed this back to my husband.

This weekend was just incredible, I have to thank my friend Sarah again for all her help and support in being my PA. She’s a star and made everything a little easier.

I would love to hear your own top tips on having the most fun at a festival! Add yours in the comments below!

Peace and love

Sam xx

Covid and an ostomy

After 18 months of avoiding the dreaded Covid, I got a positive LFT test in December, followed by the PCR confirming it. No-one else in the house was testing positive so I was lucky enough to have a spare room in the house to move into, as my daughter is away at uni, there is also a small bathroom and it is on the top floor of the house, so I was able to avoid the family and isolate.

I searched a lot about how Covid could effect my ileostomy and didn’t find too much. I did find ‘An Ostomates experience of Covid19’ on the Coloplast website, so that is worth a look. So I thought I would share my experience, as always this is just my personal experience and Im not medically trained, so if you are concerned about yourself, you should speak to a medical professional.

It started with just feeling a bit off, a high temperature and a bit of a cough, after testing and isolating, I felt a little rough for a couple of days but nothing too bad. Then on day three, I began to vomit and have extremely high output, my temperature was sky high and I felt terrible. I started taking rehydration sachets to combat the vomiting and diarrhoea, but by day 5 it was really tough.

My husband tested positive at this time too, and he was feeling really poorly. We had similar symptoms in some ways, high temp, sweating, feeling hot and then freezing. We both had terrible headaches, were exhausted and sleeping a lot, were breathless and our chests hurt.

But it was the vomiting and high output from my stoma that was the worst. By day 5 I couldn’t eat at all, I was only keeping down sips of water and I had to call 111. I was terrified of being admitted to hospital. Would I end up on a ventilator? Would there be stoma nurses on Covid wards? Would this damage my kidneys again? What if I died? 111 were great and got a GP to call me, he listened to my concerns and prescribed some anti emetic medication to help me stop vomiting and told me to continue to take the rehydration sachets, with orders to call 111 immediately if it got worse, if I passed out, if I stopped peeing.

My lovely friend picked up the medication and dropped it at out doorstep and though it helped with the vomiting, I was still extremely nauseous and my ileostomy bag was just filling with watery bile constantly. On day 7, I had to call 111 again as I couldn’t even keep water down, they gave me some more anti emetics and I was told the next step was hospital. I had also started coughing up grey and green phlegm, which I was told is not a symptom of Covid but of a chest infection, which was probably caused by the Covid, so I was given a high dose of antibiotics.

Woman with an ileostomy and COVID 19 looks thin and poorly

What was so difficult is that my husband was as poorly as I was but without the vomiting. He was bed ridden and his temperature was frighteningly high, had awful headaches and fatigue. So we lay in bed, side by side feeling sorry for ourselves but they do say misery loves company!! So it was actually quite nice to be in it together.

Luckily the vomiting and output slowed down after this, and over the next few days, I started to feel a little more human. It was around 10 days of feeling really ill, and I lost over a stone in that time. I was still very weak and poorly, but once I could eat and drink again, everything became a bit more bearable.

Whenever I am poorly with a cold or infection, my stoma reacts badly and I get bad diarrhoea and so it wasn’t too much of a surprise that Covid caused the same thing for me. But it was a scary time and I am so glad we are over the worst of it now.

All I can say is that if you have any illness that causes your ostomy to act differently, it is worth calling your GP to check in. Dehydration is so often overlooked or thought to not be a big deal, but its huge and it can damage your kidneys and make you incredibly unwell.

The NHS says: You’re at an increased risk of becoming dehydrated if you have an ileostomy because the large intestine, which is either removed or unused if you have an ileostomy, plays an important role in helping absorb water from food waste.

This makes it important to make sure you drink enough fluids to keep your urine a pale yellow colour to prevent complications of dehydration, such as kidney stones and even kidney failure.

Symptoms of dehydration in adults and children include:

  • feeling thirsty
  • dark yellow and strong-smelling pee
  • feeling dizzy or lightheaded
  • feeling tired
  • a dry mouth, lips and eyes
  • peeing little, and fewer than 4 times a day

Dehydration can happen more easily if you have:

  • diabetes
  • vomiting or diarrhoea
  • been in the sun too long (heatstroke)
  • drunk too much alcohol
  • sweated too much after exercising
  • a high temperature of 38C or more
  • been taking medicines that make you pee more (diuretics)

How you can reduce the risk of dehydration

  • Drink fluids when you feel any dehydration symptoms
  • If you find it hard to drink because you feel sick or have been sick, start with small sips and then gradually drink more.
  • You can use a spoon to make it easier for your child to swallow the fluids.
  • You should drink enough during the day so your pee is a pale clear colour
  • Drink more when there’s a higher risk of dehydrating, for example, if you’re vomiting, sweating or you have diarrhoea.

A pharmacist can help with dehydration

If you’re being sick or have diarrhoea and are losing too much fluid, you need to put back the sugar, salts and minerals that your body has lost.

Your pharmacist can recommend oral rehydration sachets. These are powders that you mix with water and then drink.


The other thing I would say was quite difficult with having Covid and an ileostomy is that I also have a ParaStomal Hernia, this is a hernia that sits behind the stoma and I am used to having to support it when coughing. Usually this isn’t a big deal as you don’t cough that often! But when you are constantly coughing, it is important to support the hernia. You can do this by gently pressing and holding the hernia as you cough, you can use your hands or a folded towel or sheet.

I am well on the mend now physically, but mentally it really took a toll on me. I have been having therapy for the past six months for PTSD after my last surgery. One of my big triggers is from when I was wrongly discharged from hospital when my kidneys were failing. I came home and I started vomiting litres of bile and my body started to shut down. The hospital called when they realised their mistake and told my husband to bring me straight back in as I had a stage 3 AKI (Acute Kidney Injury). I was very unwell but thankfully it was a good outcome and I recovered. But the incident made me develop PTSD, I had panic attacks, insomnia and depression. The symptoms of Covid, the vomiting, the dehydration, the panic of whether I would go to hospital or not, it made those past feelings come flooding back and I have had a bad few weeks trying to deal with this relapse into anxiety.

Its been about 6 and a half weeks since I got Covid, and Im happy to say that I am doing much better now physically. But I wanted to just note down my experience and send lots of love to anyone dealing with covid, long covid or the mental health issues around living through a pandemic.

Peace and love

Sam xx

Hello 2022 – chronic pain and negative thoughts

Hi guys,

Firstly, an apology. It has been three months since I last blogged and I am sorry for not being about. I think I have just had so much going on in my head and life and I haven’t had the strength to talk about it too much. I always want to blog and have some lightness and positivity and when I haven’t felt that in the real world, it felt wrong to put out more negativity into an already messed up world!

But it is 2022, and though I am not doing any resolutions (mainly because most people break them and then just feel worse about themselves) I would like to get back into regular blogging. `I know how much it helps me and I have had some really lovely messages from people saying they miss reading my blogs and that they have helped them. So I am going to try and be more regular here. I hope to leave this world just a little brighter than when I came into it and so if I can do this through the blog, then maybe its ok to not always be sweetness and light.

So over the next few weeks I am going to try and catch up a little about what has gone with me over the past few months, but for today I just wanted to chat a little about when New Year doesn’t feel quite so happy. I want to point out now that I am talking about suicidal feelings due to chronic pain in this post, so please don’t read if it is going to trigger you.

As we say hello to 2022, I think everyone is feeling a little worn out, two years of a pandemic will do that to you! And for lots of people, it is an overwhelming time. As you see a million adverts for products to make you a newer, better you. As everyone talks about resolutions, and diet plans and changing things about themselves to be fitter, happier, better, stronger, sexier, blah blah blah, it can be a bit much.

As I start a new year, I think about what will be different for me? And when you have constant, chronic pain, it is easy to feel a little hopeless and think that nothing will be different. It feels exhausting to think about another year in pain. It feels draining and scary. Living with pain that the doctors tell you cannot be fixed means that I do feel overwhelmed at the thought of life without reprieve. And it is hard to feel happy or excited by that.

I don’t want to scare anyone by what I talk about next, and I do want to add in another trigger warning that I will be talking about suicide. I am not in danger, I am medicated, I am going through therapy and I am open with my partner about these feelings, so please do not worry about me. But I do think it is important to talk about the links between chronic pain and suicidal thoughts, or completion of suicide. If this is too upsetting for you to read about then please do skip this blog.

If you are feeling suicidal now, then please stop and get support. If you are in the UK, there is a great list of helplines from MIND here, if you are in another country, then speak to someone you trust or search for support in your area.

 This study states that, “individuals with chronic pain are at least twice as likely to report suicidal behaviours or to complete suicide”. I got a lot of information from a great website Pathways here, the blog is by Ann-Marie D’arcy-Sharpe and is very much worth a read.

She says “When you feel that chronic pain is forever, the future can seem daunting. You start to wonder if you can set goals for the future if you’ll ever be able to function and enjoy your life. It truly can feel hopeless, and this can pose a big risk for suicidal feelings. Being in constant pain is a horrible experience. Knowing that this pain is long term and for some people constant, can make it feel impossible to go on. It’s completely natural not to want to live in pain. Your body and mind are not designed to cope with being in pain regularly. When patients are not given another way to escape from their pain (meaning through treatment), they can feel that there is only one escape route.”

Though I haven’t been blogging here, I have been active on Facebook and Instagram and I know a lot of you follow me on those platforms. I have been sharing about my insomnia and how I am struggling to sleep due to anxiety since I had Covid (I will be blogging about the covid for sure as it was a doozy!!!) and pain. And so I was interested to read that “lack of sleep is one of the highest risk factors for suicide in any person, even without chronic pain. When we don’t get enough rest, our bodies and minds struggle to function. Tiredness can make your mood drop as well as causing you to feel weepy and confused. Fatigue can cloud your judgement and make you act out of character. For many chronic pain patients, sleep is the only respite they get from their symptoms. When they are deprived of this break from their pain, they can feel trapped and the need to find another way to escape their pain can increase. This study explains just how high of a risk factor insomnia is, explaining that frequent lack of sleep is, “linked to a five-fold increased risk of suicide in both the general and chronic pain populations”

So adding together chronic pain and a lack of sleep does make you struggle more and increases your risks. Oddly enough, just reading this has actually made me feel better! That may sound odd but I have felt like I was losing my mind recently. My pain levels are high and my sleep is at an all time low, I feel anxious, sad and hopeless and the turning of a new year has made me feel unsure as to how I can face another year of this. But knowing that I am not alone, that it isn’t just me, has made me feel buoyed that I am just processing these difficult events. I am not going ‘mad’ and I am not going to harm myself.

My brain is processing and working through chronic pain. I recognised that I wasn’t doing so well last year and saw my doctor who prescribed me antidepressants and referred me for therapy. I have been seeing a PTSD and trauma specialist who has experience in working with people with long term health conditions for around 6 months and we are working through a lot of my issues.

I feel no shame in telling you about my medication support and talking therapy support for my mental health, I don’t feel stigma or embarrassment. And I hope that times are a-changing and we are all recognising that every single one of us have issues that we may need a little extra support with! If you are struggling, then please don’t face this alone. Speak to someone you trust, speak to your GP, get help.

So anyway, finding this blog made me see that chronic pain and suicidal thoughts are a problem for a lot of people. But it also really made me think about what we can do to get support and to help ourselves. As always, just a reminder that I am not medically trained and you should always speak to a medical professional for any medical problems. This list is a few things that may help you.

Seek treatment for chronic illness

This may be psychological treatments, physical therapy or medication. Speak to your GP, specialist nurse or consultant about what treatments are available. I have finally been referred to a Pain Clinic after a long time of asking, don’t give up. You are entitled to support.

Meditation

There is a free meditation suggested by the NHS here. They say “With this guided Pain Management meditation anyone can start using meditation as a tool for managing pain. Pain, stress and our emotions are connected, making living with pain difficult physically and psychologically. With meditation we can change our relationship with pain, reducing its impact on daily life. Experience the amazing power of your calm mind!”

Studies say that “pain is a multidimensional experience that involves sensory, cognitive, and affective factors. (This) renders the treatment of chronic pain challenging” it says that meditation and mindfulness significantly helps with pain. I know people feel sensitive when we talk about non-medicated treatments for chronic pain, and I get it. If I could think myself pain free I would!! For me, meditation and mindfulness isn’t about getting rid of the pain, but I have found it helps as one coping strategy amongst many others.

Pain websites

There is a lot of information about living with pain, here are a couple fo websites to check out.
Charity: Action on Pain

Charity: Pain Concern

Pain relief

If over the counter pain relief is not helping, then speak to your doctor about prescription pain relief. Just remember that often pain relief needs some tinkering to get right for you. If your prescription pain killers aren’t helping, then get a review with your doctor to look at dosage or potentially a different type.

Exercise

Believe me, I know that when you are in pain, the last thing you want to do is to exercise!! But studies show that gentle exercise can help psychologically and physiologically with chronic pain. The important thing is to choose an exercise that won’t put too much strain on yourself. This might be walking or swimming or gentle stretching. If you have a long term health condition, it is good to chat with a medical professional before starting out on a new exercise regime.

Mental Health Support

I have been under the mental health team for around six months now, I see a fully trained therapist who has experience in working with disabled people and people with long term health conditions. Speak to your doctor about a referral or search for private therapy in your area.

On the NHS Scotland website, you can work through a self-help guide that uses cognitive behavioural therapy (CBT) to help you live with chronic pain.

Speak up

Living with chronic pain can feel super isolating, speak up if you are struggling. That may be to your partner, a friend or family member, but speak to someone you can trust. You can also look for support groups in your area or online. You might want to look for a chronic pain group, or for a group that specialises in your specific illness. Speaking to others makes you feel less alone and can help you feel more positive and find coping strategies.

I suppose my biggest thing to say here is that whatever you are dealing with right now, you are worthy, you are wanted, you are better here. Please reach out if you are struggling with your mental health right now. Put your hand on your chest, can you feel your heart beating? That is called purpose. You are alive for a reason, so please don’t give up.

Peace and love

Sam xx

My head is full and my heart is heavy

“My head is full and my heart is heavy”. This was the only way I could describe how I am feeling to my husband this morning. Full, heavy, weighed down, overwhelmed.

I know that so many people are going through tough times right now, the air feels full of worry and stress, like when you get off a plane in a hot country and you can’t catch your breath. No matter how many deep breaths you take, you can’t seem to get enough oxygen. It is trapped and smothered by anxious thoughts and mild panic.

I wish I could pin point what is making me feel this way, but nothing is ever that black and white is it? It is the many shades of grey inbetween that dissolve the colours of life. Turning the technicolour of glorious life into an old, scratchy black and white movie. I am hopeful for the day that I will step into Oz and my eyes will see colour again.

I have a lot going on, the continuing saga of life with chronic illness, the stupid bloody hernias that haunt me. Then I slipped a disc in my back a few weeks ago that left me bed ridden for a week, it is better but still causing jip. I have a lingering UTI that I am fairly certain is ignoring the antibiotics and just sticking to the stress and keeping warm in my bladder. My awesome daughter left for university a few weeks ago and I miss them dreadfully. My eldest son has moved home with his lovely fiancé whilst they are between houses, my youngest has started college and a new job. Then there is the ‘stuff’, you know work, study, chores, food shopping, cooking, cleaning, walking the dog, taking the cat to the vet weekly as she has damaged her ligaments in her leg, sometimes it all just feels a bit overwhelming.

I feel like running away. I would happily take my husband, kids and friends with me on this escape. But man, life is a lot isn’t it.

I am usually a glass half full person, I can find the silver linings even in the shittiest of clouds. And I do still feel like I am that person. But everything just feels very full at the minute.

A friend told me of a story about a flower that droops and withers, no matter how much it tries to find the sun. And there comes a point where you have to stop blaming the flower for failing to thrive but look at the environment it is in. Without nutrient rich soil, sun and water, the flower will always struggle no matter how cheerful it tries to be.

Now, I know I am extremely lucky and privileged in many ways. I have a nice home that is safe, warm and mine. I have a great husband, kids and friends. I have money in the bank and I am not (too!) stressed about paying my mortgage or bills this month or next. I have food in the fridge and an oven to cook in. I am luckier than most people in the world.

But years of poor health and the mental health struggles it has brought with it has worn me down.

I know I choose to fill my days, I take on things that I probably shouldn’t because I have to prove to myself that I am here and valid and ‘normal’. That I can work and study and do extra projects because ‘this illness won’t stop me!’ And honestly, I love a lot of what I do. But right now, today, my head is full and my heart is heavy.

I want to simplify my life, remove the stuff that I do mindlessly, that wastes time and causes me sadness (instagram reels, news, scrolling through endless hateful internet comments). I am reading a book at the minute called Homesick – why I live in a shed by Catrina Davies about consumerism and simplifying your life and your surroundings.

The cost of a thing is the amount of what I will call life which is required to be exchanged for it, either immediately or in the long run.

Henry David Thoreau

She quotes Walden by Henry David Thoreau when she reminds us of how it is quicker to walk anywhere than it is to work to pay for the ticket to arrive in style. And this simplifying of life feels very attractive to me right now.

I look at the waste produced each week by me and my family, the stack of boxes plied awaiting recycling collection from the crap we have bought over the internet from companies that don’t give a shit about the environment or the people who work for them. I see the monthly outgoings that seems to get more each month. I feel the weight of the possessions I have collected over my lifetime. And I kind of wish it would just all disappear. That I could live more simply, smaller yet more connected, connected to people I love, to community, to good, to nature, to creativity.

Perhaps it is that I turned 40 this year and suddenly feel the rush of the years gone by and realise how quickly the next 40 years will go. And I wonder how the things we do, the things we buy, the need to live in a bigger house, a better area, whether these things become the chain that holds us back.

If I could snap my fingers, my life would look different. I would live by the sea, close to nature, I would swim and walk and grow vegetables, tend to my chickens. I would throw away my phone and just use one to actually speak to the people I love, I would untether myself from the tangle of social media. I would live in a little house in the woods with my husband, buying little, creating much and feeling more connected to the earth.

Then I wonder what is stopping me?

As I sit here, taking tablet after tablet of the medication that keeps me going, I do start to wonder if I changed my lifestyle, would I improve my heath, my stress.

I wonder how to make my head less full and my heart less heavy.

I wonder if now is the time to make some changes.

Peace and love

Sam xx