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

Acceptance

I am in the middle of having therapy, it is trauma focussed CBT (Cognitive Behavioural Therapy) along side talking therapy. This is to help me with the feelings I have had around years of illness, surgeries and ongoing illness. Though I was nervous going into it, it has been hugely helpful to me. I wanted to talk a little about acceptance today.

In my head, accepting my illness felt like giving in, like losing hope and accepting that my life will always be a bit shit. But in working with my therapist, I am learning about how that warped view is holding me back. Acceptance to me now is about giving myself the freedom to let go of all the negative feelings and learning how to use coping strategies to live with chronic illness in a way that allows me to have the happiest life I can.

I am realising just how much guilt, shame and anger I have carried with me. Guilt in how my illness has effected my family and friends, shame of the imagined failure of my body and anger that I am not ‘normal’. And what I have learnt is how those feelings are holding me back and don’t have any positive outcome.

woman with NG tube and a bag of bile

I have been incredibly poorly for half my life now, starting with ulcerative colitis and leading to multiple surgeries to remove my large intestine, then my rectum and onto life with hernias that cause daily pain and struggle. My first surgery was in 2013 when I had my first ileostomy formed and my last surgery was in February 2020 where I had a lot of complications, including my kidneys shutting down and I nearly died.

Till my last surgery, I was always hopeful. But that hope was a dream of returning to a life with no illness or pain. And so after my last op failed yet again I was told that I had reached the limits of medical science, and that it was now a matter of managing my symptoms and achieving the best quality of life I could with pain and illness. As my doctor said this to me, I felt crushed. I felt that I had no hope any more and that I was being given a long, slow death sentence. I was reeling and didn’t know how I could possibly live like this.

That’s why I started therapy, to help me deal with these feelings of utter hopelessness.

And slowly but surely, it is working. I am letting go of the negativity and beginning to work on making my life the best it can be. I’m questioning myself when that mean spirited voice we all have in our head and telling it to shut up! It isn’t the big things so much, as the little ones.

Accepting that it is ok for me to get a taxi to work. Before I would force myself to get public transport because I refused to accept that I couldn’t do a ‘normal’ thing like getting the bus and then doing a full day at work. It’s almost like I was punishing myself. Now, I get the damn taxi if I need to! And I celebrate the fact that I am well enough that day to go to work.

I accept that I may not ever climb a mountain but that is OK. I may never run a marathon, or cycle for miles, or swim the channel. Before I would beat myself up about these things, so angry that my illness has robbed me of opportunities. But this anger has zero positive outcome, so why I am wasting my time and energy with it.

I can give up these ideas of things that most people in the world will never do and just revel in the things that I can do. I have a job I love, working with my husband. I have wonderful friends, fantastic kids and I am studying Fine Art at university at the age of 40! I have this blog that allows me to connect with people all over the world and offer support. I love to travel both abroad and in the UK in my camper van, I have visited some amazing places around the world. I have a nice home, I am safe and secure, I love and I am loved by some of the most brilliant humans in the world.

I was wasting so much effort worrying about the things that I cannot do that I lose sight of the life that I do have. And it is pretty bloody good.

I’m not 100% there, but every day I am learning acceptance.

I will probably always live in daily pain, have to take many medications every day and not be physically able to do everything that I want to do. But that’s ok because it is the life I have and my illness is just one part of that life.

I love and I am loved.

I think if we can say that, then whatever our other circumstances, we are pretty lucky.

Peace and love

Sam xx

Looking after your stoma: helpful hints and advice

I am doing an event on Facebook premiere with Clinimed about helpful hints and advice for looking after your stoma. I am joined by a ostomy product specialist and a stoma care nurse to answer all your questions about life with a stoma.

Join us on Thursday 15th July at 10.30am on Facebook.

Sam xx

The Gap

I wanted to talk a bit about The Gap. The Gap between what I want to do and what I am able to do and how I am learning about it all the time.

When you have a chronic illness, there is this gap, a space between what you are physically able to do and what you wish you could. And it isn’t something that is often talked about. I suppose because it is such a sore point, it feels hard to admit when you can’t manage to do the things that others can.

For a lot of people there are coping mechanisms, changes in routine that allow them to do a lot of what they want, for others there are definite barriers and limitations and this isn’t easy to accept.

I can only speak about my own personal experience and how my journey is always evolving. I’m currently in the process of trauma focussed CBT and I am looking inwards and figuring out a lot of stuff. About what I want and what I can and cannot do and going through acceptance for some and coping strategies for others.

I have been talking to my therapist and Timm about my frustrations of how I wished my life looked and what it currently does, and this led me to think about The Gap.

There are things I probably won’t be able to do, in my personal circumstances, I have hernias that are currently inoperable. I am in pain almost constantly and physically my body isn’t able to do certain things. I can’t lift anything too heavy, I will probably never be able to surf in Hawaii, or hike through the Burmese Jungle. I probably won’t be able to run a marathon, do the Sheffield Round walk or dance all night in a club. (Just to stress that this is my situation, there are people with stomas who do all these things!) I can learn to accept these things. It’s ok! Also who knows what will change in the future with medical advances, but right now I cannot do very physical activities. This is my Gap.

Sam Cleasby is a Sheffield blogger, she stands with arms folded in front of a brick wall. She has pink hair, a jewelled headband and a floral dress

But you know, there are other things that sit in The Gap that are more mundane. I wish I could just feel the same physically every day. I wish I could know that I was able to wake each morning and not be fatigued, not be in pain, not feel filled with anxiety. I wish I could plan each week and know that I am able to work on Friday in the same way that I work on a Monday. I wish I could get up every morning and go for a swim, head to work, come home and cook a meal and hang out with my kids or friends, then plan a fun filled weekend of walking the dog, meeting mates in the pub, going shopping or just getting household chores done. And right now, I can’t do this. This is The Gap that I find so difficult to accept.

When I look at life like this, it feels awful and hopeless and it is easy to get stuck in that bad place, to wonder how life went so awry from the life you had planned. But I have always been the sort of person who tries to find the silver lining. I am also incredibly stubborn. Ok, so this isn’t the sort of life I expected, there are lots of parts that are very tough. As I talked to Timm earlier, he said something pretty wise.

“We all just live the best life we can. Some days, that’s going to mean our best life is sitting in our pants watching TV because you’re in pain. Sometimes it means we will hang out in the garden because you aren’t able to go out. Sometimes it means having a pint in the hot tub rather than in a pub. But these are all good things!

We are taught we should be living wild, crazy lives but we just need to do what we can to make us happy.”

Life is a learning journey, of figuring out ways to make your wishes a reality, accepting that some things won’t be as simple to achieve but finding coping strategies to make things work for you in your own way, adapting and reacting to changes in our lives and making yourself happy.

There are things that I difficult but I still manage to do them in my own way. I am a student! I went to university at the age of 39 and have just finished my first year of a Fine Art degree. That is something lots of people couldn’t do even in full health! I work running our photography business with my husband Timm, yes I need to work in a different way, I am not full time and I have to be flexible in my working hours. I run this blog, I started one of the very first UK based ostomy blogs, that is pretty special even if I do say so myself. I have done talks about disability all over the world and I am incredibly proud to have been able to help offer support to people all over the world.

Sam Cleasby Sheffield disability blogger

More than any of these things though, I am a kind person. I am loving and loyal, I am a great mum, I am the best wife to Timm. And I am a good friend. I am so amazingly lucky to have a fabulous husband and children and the best friends anyone could hope for. I have a lovely home in a nice place where I can walk my dog in woodland and a park at the end of my road. I have a good life.

I suppose my point is that we all have a gap between what we want and what we have, what we wish we could do and what we can do. And it is easy to dwell on that, but that ease doesn’t lead to happiness. What makes me happy is to think about the beautiful parts of my life and enjoying them. I know I will live with The Gap, but I will live the best life I can with it.

Peace and Love

Sam xx

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