World IBD Day 2021 – I am not broken

It is World IBD Day today and to celebrate this day, I thought I would write a little about the journey I am on and have been on for so long. After multiple surgeries and when my body is scarred, in pain and struggling, it is easy to feel broken. But I am not broken. I am a survivor.

I am at art college in Sheffield and my practice this year has all been around trauma, especially the medical trauma I have faced. I decided to do a photography project with myself in the frame. I wanted to show a body that may be in the middle of trauma but is also healing, both physically and emotionally.

Sam Cleasby disability activist and blogger sits naked covering her body with her arms, she has an ileostomy bag and is covered in medical tubing

Wrapped in medical tubing, naked and baring my soul, I am defiant, I am fighting, I am a survivor. There are times when I feel so weak and afraid of everything, but this is my anger, my strength, my fight. My stoma and my scars are the war wounds of my life and I will wear them with pride, they are a visual reminder of the battles I have faced and won. Sometimes, it doesn’t feel like a win, but I am still here and every survival is a celebration of life.

My body has changed so much over the years, I am currently the heaviest I have ever been, I have hernias that jut from my belly like melons, I am covered in scars and take so much medication every single day. It wasn’t easy to shoot this, to shed my defence layer of clothes and sit naked and vulnerable. But I am so glad I did, I feel empowered and beautiful.

Today isn’t an easy day, I am in pain and the meds have kicked in meaning my head is fuzzy and my words may be a little jumbled, but I am here.

I am not broken.

I am a survivor.

Happy World IBD Day,

Peace and love

Sam xx

Women of Sheffield awards 2021

I was absolutely honoured and over the moon to win the Sarah Nulty Award for Creativity in the Sheffield Star Women of Sheffield Awards!!!

Thank you so much to everyone who nominated me, it is truly an honour!

Peace and love

Sam xx

Finally, an update!

Hey badasses, I am sorry for being absent for so long. It has been a bit of a rough ride and I just haven’t had the emotional energy to blog for a while. I think it is really important to put your own well being first, and often as a blogger, you feel the pressure to be constantly updating and blogging about your health. But it is vital to put yourself first and that means sometimes I won’t be about here to write.

Where to begin?

After my surgery in February 2020 where I had a full abdominal reconstruction to try and deal with the multiple hernias, I spent the last 12 months in recovery. Being very careful, following all the instructions and healing whilst going through a pandemic! I was hoping that this would be my final surgery and that all would be good from here on in.

Unfortunately, I have been in a lot of pain and after CT scans and hospital visits, I found out last month that my hernias are back. One behind my stoma that stretches up to my ribs and down to my groin and one in my right side. I am devastated.

Black and white image of woman in long skirt with large hernia

The surgeon said I am now at the limits of medical technology and further surgery right now would be far too dangerous to my life to even consider. He spoke about how now we have to focus on quality of life and how to manage the hernias. I was in absolute bits, I can’t believe my bad luck with hernias! He was very lovely but also is straight with me, he told me how complex my situation now is and that he wanted to take my scans to international symposiums and reach out around the world to other surgeons to see if they have any thoughts. I always knew I was special!!

The news hit me hard

I cried for weeks just feeling like I was being given a long, slow, painful death sentence. I know how dramatic that sounds but when your surgeon is telling you that you are at the limits of technology, it feels pretty dramatic! I feel like shit. The life I thought I would lead feels like it has gone in a puff of smoke and that I will always live in this daily, gruelling pain. My mental health has taken a nose dive and all the hope I had has been yanked away from me. I just feel completely devastated. It’s not fucking fair!

I didn’t want to blog about this at the time, I was in such a dark place that it didn’t seem fair or right to put that out into the world and I just wasn’t ready to share. Man, I wasn’t even ready to speak the words out loud.

But now here we are. And I am ready.

What happened next

So a couple of things that have happened since, I started on Amitriptyline. “Amitriptyline is a type of drug called a tricyclic antidepressant. These drugs were originally developed to treat anxiety and depression, but when taken at a low dose they can reduce or stop pain. It works by increasing the amount of serotonin your brain makes. Serotonin is a chemical, called a neurotransmitter, that the brain sends out to nerves in the body. It’s thought to improve your mood, emotional state, sleep and the way your body responds to pain. By raising your serotonin levels, amitriptyline should change your body’s reaction to pain. The low dose won’t treat depression, but it should reduce your pain, relax your muscles and improve your sleep.” This information comes from Versus Arthritis.

I have also this morning been to the Orthotics department at my hospital. “Orthotics is a medical specialty that focuses on the design and application of orthoses. An orthosis is an externally applied device used to modify the structural and functional characteristics of the neuromuscular and skeletal system” Via wikipedia They have fitted me with a specially designed hernia support for people with ostomies. I have also been referred to Physiotherapy.

Woman with pink hair with hernia and wearing a hernia support belt
Side view of woman with large hernia and wearing a hernia support belt

Positives

I think the most positive thing that has happened though has surprised me a little. After getting over the initial shock, I actually feel much better. I feel free. For 8 years now I have been through surgery after surgery, always waiting for the time when Ill be fixed and better and ok. I feel like I have put so much on hold during this time, I have put things off waiting for this hallowed day when I will be me again.

But this has made me realise that I have been me all along. It’s just a different me than I was before. And I thought I would go back to some magical day before I was ill but the reality is that I have these chronic, lifelong illnesses that are never going away and I need to accept that. And I think I am getting there. Don’t get me wrong, I am not all sunshine and rainbows quite yet, I still feel raw, hurt and angry that I have to go through these things. But I do feel like I am accepting it and moving forward as this new me rather than yearning after a life of the past.

I do feel sad about the way I look. The hernias are so swollen and make my body misshapen and painful. By the end of the evening, my tummy is huge and swollen. I look 7 months pregnant. And as shallow as it may be, I feel sad that my clothes fit weirdly and my body isn’t very attractive.

But I also feel like I can put aside these ideals of one day being perfectly well and pain free, and as shit as that is, I do feel freed by it. I feel like I can make different plans now without this constant worry that I am doing something wrong.

Visualisations and reality

I don’t know if you remember, but at a surgery a couple of years ago I used a lot of visualisation and meditation to help me get through the pain and recovery. One of my visualisations was floating on still water in a kayak with my husband, just us, the water and the skies. The only noise is the birds and water around us. This visualisation helped so much to calm me and focus on breathing during panic attacks and the worst of the pain. But it very much felt like a dream of something so far in the future, on this perfect day when I waved goodbye to the hospital and was fixed and new and all the medical shit was done and dusted.

Well the knowledge that that day is probably never going to come made me take action. We bought that kayak. We went out on the lake. I sat with my eyes closed, the sun on my face, the calm water surrounding us, holding Timm’s hand and it was bliss.

Kayak on lake

I did it!!! I did this thing I had dreamt of and put off and put off and it was amazing and wonderful and fucking perfect!!! I paddled and felt fierce and strong. I donned a wetsuit and life vest and did this thing I never really thought was possible and it was beautiful. Will I ever be the fastest, most powerful kayaker? No, of course not! Will I be totally pain free in my life? Probably no. But in that moment, I felt like I could do ANYTHING. And it felt good.

I suppose I just wanted to write and get all this out, this blog has always been so cathartic to me and it is a privilege that so many of you amazing people read it and connect with me. I know I have been very absent, both here and on social media. But now I am ready to share that there is shit news, but that also gives me perspective and a freedom to let go of so much baggage. And though I still have very bad days, the good days are here and it feels a tiny bit easier to see those silver linings, the green lights, the positives in my life.

Peace and love

Sam xx

Of the panic

I am doing some creative writing workshops with the brilliant Off the Shelf festival and I wrote a piece about how my panic attacks feel. I thought I would share an excerpt from it here. I have had a bad few days but the release of writing has really helped me.

I want to talk to you about that feeling of being so overwhelmed, of the tsunami of fear, sadness, worry and anxiety, of the panic.

It is like you are floating in the ocean, there are bumps and waves, occasional swells. There is the movement of the sea that changes with the tides and pull of the moon. Sometimes there is a surprise splash that hits you unexpectedly in the face. But hey, that’s just the ocean, right? 

You deal with the ocean’s movements even the unpredictable ones, but sometimes the waves grow higher. They are choppy and the atmosphere changes, you can feel that something dreadful is approaching.

You feel the tide pull from underneath you, as if the whole world is taking a deep breathe in, it is gathering momentum. It is drawing all the power from around you and pulling the oxygen from your lungs.

Then there it is. A swell ten storeys high and it is heading straight for you. In panic, you look left and right in a frenzy for an escape but there is nothing but deep blue sea for miles around. The horror is the knowledge that this is going to hit and it is going to hurt and there is nothing you can do to stop it.

In those last seconds, you gasp, there is silence, you are alone. 

Then it hits you with a roar so ferocious that you just hope it takes you quickly. You are under.

Which way is up? Which way is down? 

You tumble without control, arms and legs flailing, you are falling yet being yanked in every direction. You are drowning in the weight of the whole ocean, pressing on your chest, crushing your spirit, breaking the very centre of your being.

The noise is incredible, the whispers, shouts and howling screams of every bad thought you have ever known and ever will know.

It hurts so bad that you just want to give in, to sink to the bottom and allow your body to go back to the earth and your soul to return to the universe. You just want it to end quickly, you want peace wherever that peace can be found.

When you are at that point, when you want to screw your eyes tight to stop your tears escaping and keep the world out, please open your eyes and see your tribe around you.

Though your fists are clenched tightly, your brain telling your muscles to contract, to grip your palms, to be ready to fight the world, open your fingers and reach out your hand to the ones you trust

When your throat is closed tight, when the words won’t escape and are trapped, choking you, you need to speak to those who are there to listen, to soothe, to never judge and to take some of the weight.

At the best of times, at the worst of times, in the darkest, most isolating and horrific of times, in the times where you feel there is no hope, no light, no point. Reach out to your loved ones and allow them in.

You aren’t alone.

You will survive this.

Peace and love

Sam xx

You can’t heal the wound with the knife still in it

I saw this tweet this week from showupforthis and it stopped me in my tracks.

It is talking about the trauma of Covid and the past year of the pandemic, and makes complete sense. But for me it made me think about the trauma of several years of ongoing poor health, surgeries, pain and suffering. I have been giving myself such a hard time about feeling depressed and struggling to ‘get over’ my illness. But this hit me hard. Of course I cannot heal the trauma when I am still in the middle of it!

I am still unwell, I am on a lot of medication and seeing two different consultants. I am starting with other symptoms and being referred to another specialist. My tummy is disfigured and swollen and very painful. I have fatigue, I can’t sleep without sleeping tablets due to anxiety and I am on antidepressants.

Yet I am asking myself why do I feel like this? Why am I so low and anxious? This tweet summed it all up for me.

You can’t heal a wound with a knife still in it.

I am still on the journey, I am still dealing with surgery and medications but I am expecting myself to be dealing with the trauma. The knife is still well and truly stuck in there and I am wondering why the wound isn’t healing!

I suppose I just wanted to write about this as I know so many of us give ourselves such a hard time whilst never looking past the surface. Many of us are living with daily pain and massive uncertainty with out health and wonder why we feel so low about it.

Not that all hope is lost, as it says, we can identify the wound, we can learn coping strategies to live with it in our side. We can move forward in learning more about ourselves and how we can manage to live the best life right now. And maybe one day I will learn to heal. But I feel like giving myself a break from wondering why I am not healing right this second.

The NHS say “Two thirds of people with a long-term physical health condition also have a mental health problem, mostly anxiety and depression.”  So we are more likely to struggle with our mental health. Maybe it is time we spoke about this a little more as I am shocked by that statistic!

This quote isn’t going to rid me of all anxiety, nor is it going to fix me. But it is going to be another card in my positive affirmations that I tell myself when times are really shitty.

I hope it helps you too

Peace and love

Sam xx

Has anyone seen my motivation?

So we are a year into the Covid pandemic, who would have thought it was still going to be so tough a year later?! Twelve months of fear, lockdowns, isolation and worry have done us all in. I miss my friends, I miss family, I miss being able to go out and have a coffee or a pint! I also miss my motivation.

I have always been a very motivated person. I annoy my husband with a never ending list of things I want to do in the house or garden. There is always a ton of future plans floating around my head. The next project, the next fun day out, the next new meal to try or hobby to attempt.

I love working and learning and hate feeling bored, so I fill my days with wonderful stuff that makes me happy. Even when I am very ill and bed bound, I will start to crochet a new blanket or learn a new craft that I can do from my sick bed.

sam cleasby disability blogger

But a year of Covid has sucked every bit of motivation out of me. I am depressed, lethargic and just can’t seem to get my shit together! I am doing bits of work for our photography business and I am studying at university for a Fine Art degree. I am managing to do the things that HAVE to get done, but I have zero motivation to do little else.

I know I am not alone in this. It has been a tough old year hasn’t it? I just wondered if anyone had advice on keeping spirits up and searching out a bit of motivation? I am currently forcing myself to go outside every day, either for a little walk in the local park or just to sit in the garden if I am in too much pain to walk. I keep promising to start yoga with the brilliant Chi Living but haven’t got my arse in gear yet.

I am reading, though I can barely be bothered to do that and I have signed up for a couple of online classes in painting and creative writing. But everything feels like such an effort at the minute!

I know my kids and partner are feeling the same and so are friends that I speak to. So I think it is OK that we all are feeling the pressure of a year of uncertainty and fear.

If you have any hints or tips on feeling a tiny bit better or how to motivate yourself, then please do let us know in the comments below.

Peace and love

Sam xx

Jim isn’t sat in his bed crying…

Hi everyone, how is this pandemic lockdown treating you? A bit shit? Yeah, me too. I have been watching A LOT of TV. And I happened upon Ben Fogle’s New Lives In the Wild on 5 on demand. It’s a show about people who have moved to and live in remote areas of the world. I saw an episode based in Australia (Series 6 episode 1) about a couple called Jim and Kim who live on their own island just of the coast of Australia. And it hit me hard.

Jim had a bad accident years ago that left him unable to walk and in a wheelchair for two years. He broke almost every bone in his body after an accident. He spoke very honestly about his recovery, and how the mental side of recovery and PTSD has been tougher than the physical side. He said he was in pain almost constantly. He was so down to earth and honest, he talked about how it had taken him years to get to the point he was at now. But how the experience made him decide to completely change his life and move to a deserted island. It was totally unoccupied and he even got to name it himself! He lives on Wilderness Island.

I cried as I watched the show. I don’t know what exactly it was, but it hit me in the gut hard. He was really open about the physical and mental side effects of his accident and I just felt really drawn to his story.

I had my first surgery in 2013 to remove my colon, since then I have had 10 major surgeries that have changed my life completely. Each one I think will be the leap home (90’s reference here! If you haven’t watched Quantum Leap, go do it immediately!) Every time, I think it is going to be the surgery that makes everything ok again, that I will be the same person I was before all these operations, that I will be ‘normal’.

And it is only all these years later that I am beginning to accept that life will never be the same. That this is probably something I will always have to live with. The chronic pain, the fatigue, the medications. This isn’t something I am finding easy to accept.

We are 10 months into this pandemic and lockdowns and the world is a very different place to what it was. We are all having a tough time. I am feeling so overwhelmed and unmotivated. My depression is back and Im taking antidepressants. And I am finding it so hard to just get out of bed in the morning.

Today, I had a couple of lectures and some work to do and I just didn’t want to get up. I laid in bed and sobbed. I just wanted to hide from the world. But I started thinking about Jim and said to myself ‘Jim isn’t sat in his bed crying. He is living his best life on Wilderness Island! If he can do it, then so can I.’

I got up and got dressed. This may not sound like a big deal but I literally live in jama bottoms and a dressing gown at the minute. If I do get dressed, its usually in joggers and a jumper. But I got dressed, I put on a lovely dress I bought ages ago and have never worn and I logged onto my computer and did my lectures. I made some art. I went for a walk. I filled my Pinterest board with pretty things I want to make in my garden. I made a nice tea for us. I changed my bedding.

I know these aren’t major accomplishments to most people. But today it felt like a real win!

Now I know some people are struggling so much and please don’t think for a second that I am belittling anyone or suggesting that a walk and some positive thinking can cure depression or solve all the world’s ills. I also know that some days, all you can manage is to get through that day by sitting in bed crying, and that is OK too. Today, I knew I needed more. I needed motivation, I needed inspiration and you take what inspiration and motivation you can. Today, I didn’t have any of my own, so I borrowed Jim’s.

Jim is living his best life even on the days where it is dark and painful and tough, and maybe I can too.

Peace and love

Sam xx

Acceptance of a life changed

I sort my medication out on a Sunday. I have one of those pill boxes with all the days on it and separate compartments for times of the day. On a Sunday, I sort out my medication for the following week, bursting the foil packets and popping out the pills. Monday: Morning, Dinner, Tea, Evening. Tuesday, Wednesday, everyday. I look at my bedroom bin filled with the empty containers. I scroll through my repeat medication list on the website. Scroll, I actually scroll as it’s so long.

But this week it feels different, I suddenly recognise that this is routine now, habit. That those repeat prescriptions are a sign of a life changed. The repeat, repeat, repeat, its my life but not the one I expected to have. I am 40 this year and I suddenly see myself as how I am. And its a shock you know. It shouldn’t be a shock, its been eight years now of surgeries, hospitals, medication, pain, struggle. But I feel the shock and wonder if this is acceptance?

I thought I had dealt with these feelings, I thought I had accepted. But maybe I only accepted a temporary change and thought at some point, my life would return to ‘normal’. Maybe that is my mistake, thinking that ‘normal’ meant the same as before when in reality, every persons normal is different at different points in their lives.

I feel loss. Like I don’t know who I am any more. When I look in the mirror I am not too sure who I see looking back at me and that scares me. The person I thought I would be, the person I was has gone. Well maybe not gone, but is buried somewhere that I am not sure I will ever find again. And I am not sure who is left.

I suppose that what I am trying to describe is grief. I know I need to reach acceptance and to get there I think I need to grieve a little. And I feel bad saying this in a time when so many are actually grieving the death of their loved ones, it feels selfish. But I do feel like I am filled with grief.

I hate that I take so many pills just to get through the day. I hate that I am weak, and tired, and in pain each day. I can’t stand the limitations in my life, that I can’t walk far, that I can’t do the things I want to do, the things I thought I would be doing. I want to go for long walks, to explore, to run and jump and skip and play and dance.

I hate how my body looks. Which is hard to admit as I think I had gotten to a place of self love. But now I look at myself naked in the mirror and all I see are scars, and lumps and I feel I look grotesque and disfigured. That is a painful thing to say here, because I know that if I heard anyone say that about themselves then I would leap to their defence! I would tell them they were beautiful and perfect and that they were the king or queen of the whole god damn world!!

I feel that I let people down all the time. That my illness and pain makes me not enough. Im not a good enough mum, not enough of a wife or a friend. And that is hard to accept. Because I know I am trying my hardest and actually I know that is enough. But it feels like such a raw deal for the people I love.

I have been looking back on old photographs recently and I see myself and I wonder where she went. I don’t know, it is weird and I don’t even know if this post is making sense. I just feel so crappy and I thought I would blurt it all out on the page so apologies if this is a bit all over the place but I suppose it is because I am all over the place.

But as negative as this post is, I think that the recognition of how I am feeling is a step forward in the journey of acceptance.

I try and find the positives, and I know that I am incredibly lucky in so many ways, I have a brilliant husband and children and so many brilliant friends and family. I live in a nice home, I am safe, I have food in the cupboard and money in the bank. I am privileged in so many ways and I am grateful of all the good things in my life.

I don’t think my life will ever look like it did before all the surgeries started, but maybe different is ok. Different doesn’t mean worse, it just means an alternative to what I expected. So I need to carry on learning to accept and having gratitude and love for the things I do have and for the future, however that may look.

Peace and love

Sam

New art – wild swimming and skinny dipping!

For Christmas I commissioned a brilliant artist Philippa Walter to make a print of Timm and I. I found her work on Instagram and fell in love with her lino prints. We discovered a love of wild swimming last year and though we haven’t actually been skinny dipping yet, we might do in the future!!

I really wanted something that showed my ostomy bag and scars so sent her photos of my tummy and our faces, though I didn’t send any nudey pics of us so the rest is artist’s interpretation!!

lino print of a man and woman skinny dipping and wild swimming in the night time
Photo via Philippa Walter Art on instagram

I absolutely love the result, it is so personal and beautifully done. Philippa was a joy to work with, she really listened to what I wanted and her work is just wonderful!

lino print of a man and woman skinny dipping and wild swimming in the night time hung on a wall

Timm loved the gift and it is now hanging in our bedroom. I can’t recommend Philippa enough, so please do head over to her instagram philippawalterart and check out her fabulous work!

Peace and love

Sam xx

Journalling

Last year I decided to keep a journal, not so much a diary but a book to draw in, make notes, save clippings, cards and photographs. I called it my Stuff and Nonsense book and for the first time ever, I actually kept it up all year! I have tried to keep a diary before, but every time, I forget or just don’t have the time or head space to write in it. My journal last year felt much freer and simpler. I didn’t need to write in it every day or every week, but it was a space to vent or share or just put pretty things.

Journal

I will keep another this year, as I do feel it really helped my mental health. It was a private space (though I am going to share a few pics here) and I used it in bad times and good. What was nice was looking back through it when I was having a bad time and remembering that there were nice times even in the darkest days.

In February last year, I had my last major surgery and afterwards I was incredibly poorly. My stoma stopped working and I had to go on TPN (Total Parenteral Nutrition) and had an NG tube (Naso Gastro tube). My kidneys began to shut down and I had a stage 3 AKI (Acute Kidney Injury). Almost a year on, I am still recovering and dealing with after effects from this both physically and mentally. The journal gave me a place to share whether that was artwork, poetry or just a blurting out of words and images that explained how I felt.

I also kept a list of all the books I read in 2020, I love reading and I think writing them down actually made me read a little more than usual.

Ive seen a lot of bullet journals that look beautiful and though mine may be a little shabby and rough around the edges, I love it and think it will be a great thing to look back on through 2020, one of the weirdest years ever! I will definitely be doing another in 2021.

Let me know if you have a journal or diary and how it has helped you.

Peace and love

Sam xx