It takes guts

It Takes Guts is a new campaign by Crohns and Colitis UK. I was honoured to be asked to be part of it. They say:

It takes guts to talk about Crohn’s and Colitis. But no one can see it until we say it. 
It’s time to speak up and break down the stigma.
One conversation at a time.

Sam and Eli Cleasby in Crohns and Colitis UK It Takes Guts purple tshirts

Part of their campaign is an animated video. I was asked to provide the voice for part of this along with two other people with Crohns or Colitis and the result is just brilliant.

Sam Cleasby Sheffield ostomy and IBD blogger animated in Crohns and Colitis UK It Takes Guts campaign

Please take a look at the It Takes Guts website, there is so much brilliant information and support and you can share your own story too.

Sam Cleasby Crohns and Ulcerative Colitis blogger in Crohns and Colitis UK It Takes Guts campaign

Or maybe you’d like to create your own emoji poster to start the conversation and share on social media?

Sam Cleasby ostomy blogger Crohns and Colitis UK Living with Ulcerative Colitis It Takes Guts

Crohns and Colitis UK

I have been a huge supporter of Crohns and Colitis UK for many years. I have received so much support and information from them in my times of need. It is a real honour to be able to give back to them now.

Also a big thank you to my child Eli who came along as my support and help for the filming and voice overs. They carried my bags, helped me with travel and was a great support all day. I wouldn’t have been able to go without help and my brilliant 16 year old was a rock all day. They even joined in on the photo shoots!

Sam Cleasby IBD blog Crohns and Colitis Uk It Takes Guts campaign

You might also recognise Timm on the website offering some words of wisdom around speaking to children about Crohns and Colitis! I’m so pleased that all my family are so supportive and help me to raise awareness like this!

Sam and Timm Cleasby in their allotment in Sheffield with a chicken

I hope you love the It Takes Guts campaign as much as we do!

✌🏽& ❤️

Sam xx

Surgery number 8

On 30th April, I went into hospital for my eighth surgery related to IBD. It was a big operation to repair a parastomal hernia and an incisional hernia. Also to resite my stoma and to deal with all the adhesions in my abdomen.

I was terrified about it, believe me, it doesn’t get any easier with experience of surgery. If anything it is more scary to know what’s coming.

We headed in for 7am and checked in, after waiting for a couple of hours I had bloods checked. Then I met with the stoma nurse to mark me up for the new stoma. Next was meeting the anaesthetist and registrar and going through the consent forms. Finally it was time to go down to theatre.

I spoke at length to the anaesthetist about my fears about pain relief post op due to past experiences. She was wonderful and put me at ease. We went through her plan to leave me on epidural for longer and what would be put in place after that. It really helped to calm my nerves.

Sam Cleasby in Sheffield Northern General Hospital ready for parastomal hernia and bowel surgery

The surgery

Timm walked with me to the theatre doors, kissed me goodbye and left. I was so wary and fearful, I honestly thought this could be the one where my luck ran out. I told him I’d written a letter just in case I didn’t make it, that I loved him and to tell my babies how much I adored them.

Into the theatre, they set up my epidural (in on one attempt thank god! Last time it took 5 or 6 goes!) and off I went to the land of nod.

The surgery took almost 5 hours, the adhesions were terrible. It took a lot of time to pick everything apart. They repaired both hernias and moved my stoma back to my right side. Then put a lot of biological mesh into my abdomen to try and strengthen it all in place.

I woke up and felt very hot and sick, I vomited a few times and was quite out of it. Then I was taken to the High Dependency Unit (HDU). I was very dehydrated. They said they had to push 7 litres of fluids through me during the surgery and that my lactate levels weren’t right. They called Timm who came over and was with me though if I’m honest I don’t really remember too much.

In HDU you’re in a room alone and have a one to one nurse. There were tubes and wires everywhere and lots of machines, it was quite frightening! I had two cannulas in my hand and an arterial line, heart lines stuck all over my chest and back. Plus oxygen mask, drains in my tummy, the epidural and a catheter in my bladder. I could barely move for tubes and wires!

Arterial line in hand after surgery parastomal hernia

Everything went a bit wonky!

Throughout the night I was pretty out of it. But the HDU nurses were amazing and looked after me so well. I had a few tears through the night just from fear and feeling overwhelmed but got a couple of hours sleep and when I woke at 7am I actually felt ok! They got me out of bed and into a large chair a bit like a lazy boy. Timm came in first thing in the morning.

Then everything went a bit haywire. And I don’t remember a lot apart from being so scared.

I started shaking a lot, my muscles all cramping and my chest hurt and I felt like I couldn’t breathe. My mind was spinning out. I felt like everyone was against me and they were going to make me have another operation. Feeling frightened but totally out of it, not knowing what was real and what I was imagining.

At first I thought I was having panic attacks but I couldn’t gather my thoughts to figure anything out. I was wild and not myself.

The staff were so kind, patient and supportive though and Timm was there every second. He started panic googling and realised all my symptoms were potential side effects from Fentanyl which was in my epidural. He asked the nurses about this, they agreed I was probably reacting badly to this and they changed the epidural.

Sheffield Northern General hospital high dependency unit after surgery

Reactions

Once it was taken down I was still reacting badly but they said it takes hours to go out of your system. During this time I used meditation, mindfulness and visualisation to calm myself and get on top of it. I haven’t quite processed it all. One visualisation in particular had a profound effect on me that was physical as well as mental. But I’ll write about this in another post.

All the terrifying symptoms slowly stopped and I could get a hold of myself. All day had been so scary, I was just losing my mind and it was terrifying. I can’t thank Timm enough for being there every second even though he was as scared as I was! He was calm, loving, patient and thought outside the box. Playing gong sounds to help meditate, going through mindful body scans or just holding my hand and repeating positive mantras. I can’t recommend getting in touch with your mind body connection enough. It’s not airy fairy or hippyish, the science behind it is real and fascinating. Again, I’ll do another blog post about that.

Onto the ward after surgery

The following day I went onto a normal ward and the anaesthetist visited every day along with the pain team. They followed through with their plans keeping me comfortable at all times. I’ve had poor experiences of pain relief on the wards post surgery. All I can say is that being vocal and firm in my needs paid off. It’s certainly not about being rude. But you need to be a responsible participant in your health and recovery. Making your needs clear and insisting on proper care is vital to receive the best support.

In the past I wanted to be a “good patient” and not bother the nurses. I didn’t want to be demanding or complain but it meant I wasn’t giving them the opportunity to understand my needs. It’s so important to speak up and explain your needs, and if they aren’t being met, ask for explanations why.

You deserve proper care and if you are left in pain or your treatment isn’t being delivered then your recovery will be longer. You’re more likely to experience complications and it can have such a negative affect on your mental health.

Coming home early

After 6 days, I was off the epidural, my surgery drains and catheter were removed, stoma working and off all meds apart from pain relief and so they asked if I’d like to go home. I jumped at the chance! I hate being in hospital and I know I recover better in my own bed.

Coming home after surgery Sam Cleasby Sheffield hospitals

It’s been a tough week at home. Helped along by lots of pain killers and the love of Timm, the kids and the doggies. I’m so glad to be here. I’m still very emotional and tearful. It’s only been the past few days where I have felt more like myself and up to visitors. The new stoma is working well. My old stoma site is still open and being packed daily to heal from the inside out. And my 48(!) staples have been removed!

Thank you

We have been overwhelmed by the lovely messages of support. Though I haven’t replied to every one, I have read them all and thank you so much!

A huge thank you too to our amazing friends who have been so lovely. Cooking for us, helping out and just being there for all of us. And thank you to my aunty Jenni for the most amazing hamper!

It’s been tough as we havent got a lot of family support. My sister lives in Australia and though she is always there to chat, especially through the night when everyone here is asleep, she’s not here to hug or to visit. Timm’s sister and dad live in Lanzarote. But family doesn’t mean blood. Family are those who are there for you and love you and so in that case, we are very lucky.

My recovery is going well but I’m still very very tired. I’ve been told to try and walk a little every day. Yesterday we went to the shops for an hour, I then slept all afternoon! We also had a trip out at the weekend to collect our new campervan so I’m very excited for that!

As I said, I’m still quite fragile emotionally, very tearful and very tired. I’m really pleased with my progress but I still have a long way to go.

I just hope and pray that this will be the last ever surgery as I really don’t think I can go through this ever again!

✌🏽& ❤️

Sam xx

Post op resolutions

After feeling very scared and anxious about my op tomorrow I thought I’d try and think positively and make some plans about what I’ll do once I am fit, healthy, strong and recovered! So here are my post op resolutions.

1. Travel more!

We love to travel, but this year I want more camping with my boy, fires, outdoors, camper van cuddles and impromptu weekends around the uk.

2. More tattoos!

Just because I love tattoos and don’t have enough.

3. More friend time

Dinners and hang outs and lovely times with my favourite people.

4. Less stress

I have a tendency to take on too much and feel stressed out. Less of this please.

5. Say I love you more

I do it a lot, but I need to remember to tell the people I love often.

6. Spend more time in nature

It makes everything better.

7. Get strong

Walk, swim, yoga, garden, be strong. Oh and I want to learn to kayak!

8. Dance

I miss dancing, I’m a terrible dancer but I love it and I want to spend more time dancing in my kitchen with my favourite boy.

9. Date nights

Dates with my boy. As many as we can!

10. More So Bad Ass

Blogs, videos, reviews, merch. Maybe even write that book!

What would your resolutions be? We are all so different, what makes one person happy might be another’s idea of hell! So I would love to hear about the changes you would would make to improve your happiness.

✌🏽& ❤️

Sam xx

Why is pain not taken seriously in hospital?

There’s 6 days to go before my surgery and I’m terrified. But you know what sucks? That the thing I’m most scared about is being left in pain on the wards after surgery. It’s 2019 and I’m not afraid of the surgery but that I won’t be given pain relief. How is this OK?

On three occasions now I have been left in agony on the wards after having major operations. Usually in the day after the epidural is taken down. The pain relief is not adequate or more likely not given at the right times by nurses.

What is happening with the NHS and pain?

You know that I love the NHS, I feel so lucky and blessed to have free at the point of use medical care. It’s something we should be protecting but something is going majorly wrong here.

I have been left multiple times sobbing and crying in agony on wards. Just begging nurses to please get me some pain relief. Ive had nurses ignore buzzers, walk right by me whilst I’m writhing and hysterically crying.

I tried to discharge myself from hospital after my last operation just 3 days post surgery because the care was so dire.

Why is it that weekend wards seem to include some terrible nurses on the teams? Of course not all nurses, but I’ve found in each of the 7 previous surgeries that the care goes massively downhill at weekends.

Pressing the nurse buzzer in hospital pain relief

Despite putting plans in place last time and seeing a specialised pain team before they took down my epidural and warning them of my fears that I wouldn’t have adequate pain relief and having my husband there as an advocate writing everything down. But the following day the nurse seemed reluctant to give me the pain relief. She said she’d be back and left me for well over an hour sobbing. She kept walking past my bed and pretending she couldn’t see me.

And others tell me the same story, that their pain is not taken seriously. That nurses especially on weekends are either extremely late in giving pain relief or make excuses and they are left in agony.

So why is it that our pain isn’t taken seriously in hospital?

How is it that my biggest fear of a major op is that pain medication will be withheld? I’m so frightened of this happening that it makes me not want to go in for the surgery.

I spoke to the Pre op nurse about this, her advice? Kick up a fuss. Don’t be a “good quiet patient”. Demand to see the ward matron and if nurses won’t do that then phone the switchboard. Ask to be put through to the ward matron and tell them the bay and bed you are in and that the nurses are not giving you adequate pain relief. Then call PALS and put in a formal complaint.

Honestly this doesn’t sit well with me, I hate to be a bother. I know that the majority of nurses are so hard working, passionate and brilliant. I know they’re under paid and over worked. But there are a few rotten apples who are ruining it for everyone.

Being a “good patient”

There are many reasons that patients don’t complain. From a lack of knowledge to inability due to physical or mental health . Also a fear of how your complaint will affect your future care and wanting to be a “good patient”.

But being a “good patient” is not about sitting in pain because you don’t want to bother the nurses. Being a good patient is about being a responsible participant in your own health. I read a book that said that “good patients” die more than people who are active in their health and recovery. Struggling in pain worsens your recovery and outcome and so we should be ensuring we have proper care.

But if a confident and outspoken person like me has been failed with pain relief and post op care then how many others without a voice are there? How many older people who don’t want to cause a scene are laid in pain? How many people too anxious to press their buzzer more than once?

What can we do about pain?

When you’re in hospital after surgery you are at your weakest, you have little or no control and are completely vulnerable. Yet we are being let down.

This issue has given me panic attacks, I’ve had to write this in a few sittings as my hands are shaking and I can’t breathe when I think about my surgery next week. When I think about it, I’m taken back to the pain, the tears, the begging. I’m taken back to a vicious old bitch of a nurse walking past me several times. To her rolling her eyes as I cried in pain and finally stabbing me hard in the arm with the morphine jab. To phoning Timm and begging him to discharge me as I had no trust in the nurse now. And I’m terrified it’s going to happen again.

Timm did come last time, he demanded to see the matron and get some answers as to why we’d seen the pain team that morning and had a plan in place and why it was ignored. He got me moved to a new ward and a promise that nurse wouldn’t come near me.

He has said he will be there this time and make sure it’s all ok and I have a back up plan.

But it shouldn’t come to this when all we are talking about is some painkillers.

And I still can’t answer the question of why our pain isn’t taken seriously.

✌🏽& ❤️

Sam

Dehydration and your stoma

As we are having a bit of an Easter heat wave, it’s more important than ever to talk about dehydration with a stoma.

What the NHS say

The NHS says:

Dehydration means your body loses more fluids than you take in. If it isn’t treated it can get worse and become a serious problem.
Symptoms of dehydration in adults and children include:

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

Its bad news for anyone but if you have an ostomy, it’s far easier to get dehydrated than someone with all their intestines because the large intestine plays an important role in helping absorb water from food waste.

Severe dehydration can be life threatening, and any dehydration with a stoma can make you feel poorly causing tiredness, a feeling of sluggishness and more.  If your output loosens and you find you are emptying your bag more frequently then it’s worth upping your fluid intake.

Dehydration and your stoma

The NHS also say:

With an ileostomy, you will be losing more salt and fluid. This happens because your colon is not being used and therefore is not absorbing extra fluid. You will need to include a teaspoon of salt a day into your diet. Salt is an essential requirement for your body and low levels of sodium (the main ingredient in salt) can affect how well your heart works. Signs of salt depletion are tingling in the fingers.

If you are also a renal patient, you will need to discuss your salt intake in more detail with your Renal Nurse Specialist, as your salt and fluid requirements may be different.

Drink plenty

You will need to drink plenty of fluids to avoid becoming dehydrated. The recommended amount is 2-2.5 litres per day (a minimum of 8 cups per day). If you are becoming dehydrated it can generally make you feel very unwell.

We recommend that you have isotonic drinks, which are higher in salt and sugar. Isotonic fluids are better for you because of the higher sodium (salt) and glucose content. They encourage fluid to be absorbed into your gut, rather than passing straight through into your stoma bag.

These types of drinks include Dioralyte (which you can buy from supermarkets and chemists) and Lucozade Sport or Powerade, or you can make up your own rehydration drink using:
• glucose – 6 flat teaspoons
• salt (sodium chloride) – 1 flat teaspoon
• sodium bicarbonate/citrate – 1⁄2 teaspoon • make up to 1 litre with tap water.
You can flavour this with small amounts of fruit juice.

Tips to avoid dehydration with a stoma

Its so important to keep on top of hydration with a stoma, I would say it’s one of the most important things. The make up of your body has changed and you need to readjust how you look after it. I remember after my first surgery the shock of just how thirsty I was.

My tips would be to have a bottle and sip through the day. I always drink sugar free squash and water as I find water alone goes straight through me. I also take a jug to bed with me as I know I get so thirsty in the night.

Rehydration sachets are not just for when you’re ill! I have them in all the time, I have one in my handbag for emergencies and they’re part of my ostomy kit.

Theyre my go to solution if I feel more tired than usual or if I have loose output, if I have any alcohol, I have one before bed and one in the morning and I highly recommend getting some in! I like the ORS tablets available from chemists and supermarkets.

When the temperature rises either at home or if you’re off on your holidays, then be very mindful of dehydration.

And as always, I can’t give medical advice so if I’m doubt, speak to a medical professional.

✌🏽& ❤️

Sam xx

The best mental breakdown I ever had…

Five years ago, I was preparing for j pouch surgery. I had a date booked in (ironically 30th April which is the date of my next surgery!) and I was mentally preparing myself for a big operation. When suddenly it was postponed by 6 weeks. All that emotion and adrenaline bottomed out and I was left utterly devastated. But in these dark times I ended up finding the most wonderful friendship.

I was so wound up readying myself for this huge surgery and when the plans changed it really knocked me and was a mess. I was crying and shaky, I couldn’t sort my head out and it was all a bit much. So I decided to run away from home! 

I spoke to my aunt and uncle in Spain. I booked flights to go have a week with them on my own to try to sort my head out. It was such a difficult time and I was overwhelmed by everything. The pain, the fear of surgery, the unknown were just all too much and I went into shutdown.

traveling with a stoma

A week in the sun

A week of sun, relaxing and time out was just what I needed. My family were so lovely to allow me to come stay with them when I was so down in the dumps.

“Just so you know” my aunty added “the boys will be here too!”

The boys are my cousins and I was thrilled that I’d be able to see them.

“And do you remember J from primary school? He is coming with his girlfriend and her daughter!”

Oh. I thought. That’s a lot of people. People I don’t know. And another woman. A stranger woman who might judge me. How can I have a mental breakdown in the sun with a strange woman watching me?!

Then I met her. Wrighty. And instantly fell in love.

Sam Cleasby friendship Sheffield lifestyle blogger

Friendship

Five years ago because of having a total breakdown and running away from home. I met one of the kindest, funniest, rudest, silliest, most loving women and gained a new friend for life.

She is so open and generous, kind and caring. She has an awfully sick sense of humour that makes me cackle. I feel so honoured and blessed to have her in my life.

Sam Cleasby Sheffield blogger friendship

The break was just what I needed, I came home feeling refreshed, positive and ready to face the surgery.

Over the years I have told Wrighty that I was dreading meeting her. That I couldn’t bear the thought of a strange woman being there in my lowest ebbs. And funnily enough she said that she thought ‘oh great! Some random cousin awaiting surgery! What a laugh this is going to be on our holiday!’

But we met and instantly connected. Sometimes you meet someone and know immediately that you’re meant to be friends. And I knew from the very first evening I met her that we are meant to be in each others lives. That our friendship was so real.

Sam Cleasby at Tramlines Sheffield

Though our friendship was so new, it felt like we’d known eachother a lifetime. She visited me in hospital weeks later. Helped me, Timm and the kids out and was there in the dark times of recovery when I just needed someone to cry at.

Love

And over the past five years, we’ve become firm friends. I’ve learnt so much from her, she’s so open with her love (that sounds weird) in that she is a very touchy feely person (I’m not making this better am I?) She made me realise how important it is to tell and show your friends that you love them and just how I probably had these walls up before that didn’t allow me to show my love so openly.

We’ve both faced good times and bad over the years and I just hope that I have been there for her as much as she’s been there for me.

It’s not often that you fing this sort of friendship. That you meet someone who you connect with so intensely, so when you do, hold it tight because that is bloody special.

Thank you Wrighty for being my friend.

✌🏽& ❤️

Sam xx

Do you remember when you learnt fat=bad?

Social media, marketing, films and TV are putting more pressure than ever on people to feel they have to look a certain way. We also are in a time when there are many voices standing up for body confidence which was something very lacking as I was growing up.

I was born in 1981 and was a teenager in the era of Kate Moss, heroin chic and waifs. But I remember vividly the first time I realised that society equates fat with being bad.

Princess Diana’s cellulite

And ironically enough it was a story about Princess Diana that started it. Someone who later we found out battled eating disorders. She was considered to be the most beautiful woman in the world. And it was this story that first made me go on a diet and feel rubbish about myself.

It was 1996 and photos came out in the tabloid press of Diana leaving the Harbour Club fitness centre in London. She was wearing shorts and the story said she had cellulite on her thighs. One newspaper called her Princess Lumpy Legs. Wow, just wow.

It was literally front page fodder and was on the tv news, everyone was discussing it. So much so that the princess denied she had cellulite publicly. Saying the dimples on her thighs were imprints from a bar stool she had been sitting on.

Several tabloids then actually hired models. They attempted to re-create the photographs to prove or disprove whether the bar stool could cause these marks.

I’d never even heard of cellulite before this, but suddenly it was all anyone could talk about. I remember seeing girls at school squeezing the flesh on their thighs to check if they had it. I thought to myself that it must be a horrific thing to get. If the worlds most photographed woman had to speak out and deny it.

Body confidence

It was probably the first time I really started judging my body I was 15 and very skinny. But these stories told me that even the slim Princess could have cellulite and be totally shamed around the world for it, so what hope did I have?

In the weeks after, every newspaper, magazine and tv show was all about what diets and exercise you should do to avoid this dreaded scourge of cellulite and I took it all in. I went on my first diet and starting buying fitness videos. I never had an eating disorder but the story really affected me and changed the way I viewed not only myself but other women and I dieted for the next 20 years.

Nowadays I have learned to love my body, whatever size or shape it is. I’ve been very slim and currently due to two hernias and extreme pain stopping me from even walking very far, let alone exercising, I’m at the heaviest I’ve ever been. I’m not actually happy with my weight and shape right now, but that’s down to feeling out of control and weak not the weight itself.

After surgery I will be working on getting strong, but none of this is for anyone else nor any other reason than I want to feel strength in my body, I am so looking forward to getting back out and walking my dogs, in dancing in bars and my kitchen, in swimming and kayaking and gardening and just being a happy, active me! I have no aims to lose a certain amount of weight or to look a certain way, I just want to feel strong and like me again and I know I can feel that at a size 10 or a size 18.

sam cleasby ileostomy colostomy bag blogger body confidence

Does fat = bad?

I have learnt that fat does not equal bad or ugly or shame, it’s only hateful and hurtful words that make us feel those emotions. I have learnt that my body is beautiful and wondrous and my wobbly bits, my cellulite, my scars and my ostomy bag are all part of that. I’m beautiful because of those things, not despite them.

So though social media does expose us to so many more negative images and stories, I’m glad we live in an age where we hear the positive stories and body confidence too. Where we can see women of all shapes and sizes looking fabulous and telling their stories of self love.

Jameela Jamil instagram body confidence

I saw this photo of Jameela Jamil in her Instagram this week showing her cellulite and it made me reflect on how differently that image was accepted compared to the photos of Diana and it makes me feel like things are changing and it is becoming easier to love your body, however it looks. Her campaign of body confidence has been so inspiring.

I’d love to hear your stories, do you remember a time when a news story changed the way you feel about your body?

✌🏽& ❤️

Sam xx

Handover documents for life

I’m due to have a big surgery on 30th April and I’ve been told I will need 2-3months off work. Obviously this is pretty stressful and I’ve been spending time creating my handover document. Advice to give to my manager and colleagues so my work will still go on whilst I’m off.

Writing all this down has actually reduced my stress levels, I’d been feeling pretty upset as I love my job and a big part of it is managing volunteers. The thought of my volunteers not getting support was getting to me but writing all the tasks down on paper made me realise that it will be fine and other people will be there to do the jobs I can’t.

And so I started to write a handover document for home! Not that my husband is stupid and can’t do all the household chores but I thought it would reduce my worries of how life is going to continue with me in hospital for two weeks and then laid up in bed  recovering.

Sam and Timm Cleasby Sheffield blogger advice

Its nothing mind blowing, but the jobs I do that Timm and the kids don’t. Cleaning the condenser on the tumble dryer, cleaning the oven, things in the allotment. Also things like advice on doctors and dentist appointments, kids plans with friends, house and family tasks.

But it got me thinking about what advice and guidance we leave behind when we die. (Sorry, that got morbid quickly!!!)

What advice would you give?

What words of wisdom, what thoughts and hopes and dreams, what would you want your loved ones to know if you died suddenly? How would your handover document for life look? Is there advice would you give? Here’s my advice.

Success is not how much money you have in the bank; success is living a happy and fulfilled life surrounded by people you love and who love you.

Time is so valuable, so spend your time with the people who make you happy, doing the things that bring you joy. It’s so easy to lose hours, days, weeks on things that aren’t joyful, some things we just have to suck up and get through, I don’t find joy in cleaning the loo but I am happier in a clean home. But the time you do have, use it wisely.

Make the time for the things that make you happy, this is about those day to day events that make you relaxed and happy, for me it’s dinner with friends, reading, gardening, sewing, my kids, my husband, watching a movie with someone I love.  I know work is important but it’s not more important than friends and family.

Be kind

Be kind. Kindness is the most powerful thing in the world. Give love, kindness and care to those around you. Not just people you know but to strangers. Try and think the best of others rather than falling into negative assumptions. Think about other people, their needs, their struggles and if you can help, help.

If something or someone makes you smile, tell them. Tell your colleague how great you think they are, tell that stranger on the train that you love their boots, tell your kids they are awesome, tell your partner you appreciate  them, tell your friend how special they are to you.

Travel as much as you can. Going to new places broadens your mind, opens you up to new opportunities and teaches you more than you can ever know. This doesn’t have to be far flung destinations (though I do love visiting new countries!) but it could be your own country, even your own city!

When you get into an argument with your partner, remember that you have the same goal, to resolve it and be happy. Even if you have totally opposing views, even when you both feel hurt, what you both want is for the argument to end and for things to be sorted. It’s easy to fall into negativity and wanting to be right, to “win”, even if this means you say something hurtful. Stop, breathe and think before you speak. Words hurt and are hard to take back.

What do you stand for?

If you stand for nothing, what’ll you fall for? Stand up for things that are important to you and for people who need your support. If you have privilege then use it to stand alongside those who don’t. Stand up against racism, sexism, hate and oppression.

Tell the people you love that you love them. You may think that they know you love them and they probably do! But give it a voice, tell your kids you love them every day. Don’t forget about your friends! Think about how nice it feels to be told you are loved and give that gift to someone else.

Make sure your partner knows that they are the most important and brilliant person in your life. It’s easy to take the people closest to you for granted, but let them know how much you love them.

Listen to music, read books, go to the theatre, go see some art. Creativity is what sets us apart from animals and it brings so much joy.

Follow your heart, is there something you’ve always wanted to do? Maybe you think it’s daft, beyond your reach or even have been told you’ll never be able to do it. Give it a go! I was told by my English teacher that I’d never be a writer, that people like me can’t write, yet here I am with a blog that’s been read over 3 million times! Ok, I’ve never written a book yet, but I’m going to keep trying!

Get outdoors

Get outdoors. Nature, fresh air and being outdoors is so beneficial for your physical and mental health. Get outside whenever you can.

Be silly. Don’t be so serious, enjoy the ridiculous things in life. Laugh, giggle, sing, dance, do whatever makes you smile.

If you are struggling, reach out and ask for help. When times are hard don’t be afraid to ask for support, whether that’s friends and family or a doctor, support service or charity. Don’t suffer alone.

Whether it’s physical health or mental health, when you’re facing challenges it can be so tough. Over the past 6 years I have dealt with so many surgeries, so much pain, depression, anxiety and feeling totally overwhelmed and that it was all too much. I understand how hard it can be. But I also know that going through life challenges has also changed me in so many good ways and has made me a kinder, tougher, more empathetic person. Whatever life throws at you, learn from it and use it.

Be the best person you can be, life is short and we never know what is around the corner, so make your life the best it can be, do the things that make you happy, be kind, show love, try your hardest and find the joy no matter how difficult.

If you had a handover document for life, what would it be, what advice would you give?

✌🏽& ❤️

Sam xx

When do morals matter more than money?

You may have seen the queen that is Jameela Jamil calling out the Kardashian’s and other celebrities for their earning money from the promotion of weight loss products such as appetite-suppressant lollipops,meal-replacement shakes or “cleansing” teas that act as a laxative. Also her satirical video.

In response to Khloé’s promotion of Flat Tummy shakes, Jameela said “If you’re too irresponsible to: (a) own up to the fact that you have a personal trainer, nutritionist, probable chef, and a surgeon to achieve your aesthetic, rather than this laxative product…and (b) tell them the side effects of this NON-FDA approved product, that most doctors are saying aren’t healthy…then I guess I have to.”

Kim has said regarding her Instagram adverts “If there is work that is really easy that doesn’t take away from our kids, that’s, like, a huge priority. If someone was faced with the same job opportunities, I think they would maybe consider.”

No. Just no.

Momma’s gotta work

I’m a working mother living with chronic illness, I’ve got one kid going off to uni this year and a 14 and 16 year old who are all bloody expensive! If I can get work that is easy and doesn’t take me away from my kids then hell yes I’m going to consider it!!

But despite the fact that my family’s need for financial security is far more intense that the multi millionaire Kardashian’s, morals come first every single time.

If you are a blogger, an influencer, a public speaker, someone who has a following then you have a responsibility to use that privilege with care, sensitivity, thought and love. You have a responsibility to put your followers health before your own bank statements.

I have been offered money to advertise so many things; Diet shakes, miracle IBD cures, weight loss fads and more. Money that would make my family more financially secure, money that would cover the loss of earnings of having 8 surgeries in 5 years, money that would relieve some of the stresses of having to reduce my work hours because my body can’t keep up with the physical strain.

Ive been offered money by companies that may well believe in their claims that their products can reduce symptoms of IBD, but until I see doctors telling me that these things are safe, that they work and having the knowledge that they aren’t just out to make money from desperate patients, I ain’t going to advertise it!

Money and my blog

I run this blog because I care deeply about raising awareness of chronic illness and disability issues, because I love sharing my story in the hope of making just one person feel less isolated. And I do it for free and out of my own pocket.

I do take adverts, but each request is only taken if I truly believe in the company and can find proof that they are decent businesses providing something that I know at least some of my followers will have an interest in.

If you take into consideration the hours and money I put into this blog and the So Bad Ass social media, I run at a loss. This blog will always be free to access, I always want the support offered to be available to as many as possible and yes, I am trying to think of ways to bring in some revenue so I can keep it going.

You may notice I don’t have many ads, this is because I’m so careful at what and who I will advertise here because my blog matters to me, it’s my baby. And my readers deserve the best.

So forgive me for not shedding a tear for a multi millionaire who chooses to promote potentially dangerous and certainly questionable weight loss products to their audience because it’s easy money.

When do morals matter more than money in blogging and social media?

Every. Fucking. Time.

✌🏽& ❤️

Sam xxx

I got my date for surgery

So I have a date for the next, sorry I mean LAST surgery! 30th April I will be heading in for what I hope and pray will be the last operation I have.

Ive been referred onto a doctor who specialises in complex abdominal cases and he is going to repair the two hernias and move my stoma again. I have been warned that it is a major operation, that my case is complicated and will be difficult and that he won’t really know his plan until he opens me up.

The parastomal hernia is huge, the opening is very big and measures about 15cm on my stomach and they know I have a lot of adhesions, that everything is stuck together.

They said it will be around 6-7 hours of surgery, 10-14 days in hospital and 2-3 months off work recovering.

Ive been told it’s risky, that I have a 75% chance of complications and that is terrifying me. I have stopped smoking though, I’ve moved onto a vape and this reduces my risks by 10% so that’s one positive.

Ill be going straight onto the POSU (Post Operative Surgical Unit) with the chance that I may need some time in HDU (High Dependency Unit).

Sam Cleasby Sheffield blogger chronic illness hospital surgery

How am I feeling? Well it feels very real now, though I knew it was coming, having a date has set it in motion and I’m feeling panicky and anxious. I’m scared of the complications, I’m scared of the long hospital stay, I’m scared I won’t come home.

I know I can’t dwell on thinking negatively but man, I just feel so frightened that this will be the one that it too much. This will be surgery number 8 in the past 5 1/2 years and I can’t shake the feeling that it’s one too many.

I’m in so much pain every day, it feels like everything is going to fall out of my stomach every time I stand up. I am struggling to function, I’m always in bed. Doing one thing means a week of being unable to stand. I’m always medicated and drugged up and I know I can’t live like this and that I need this surgery.

And so I have to try and think positively, I’m reading a lot about the mind body connection and how meditation and visualisation can decrease pain, stress and anxiety and can improve mental health, shorten recovery time and help you heal quicker.

I feel like I’m on a narrow ridge, on one side is positivity, strength and happiness and on the other is a swirling mass of anxiety, fear, sadness and panic and honestly, I feel like I could lose my balance either way right now. I’m trying to slide into the positivity but there’s this weight pulling me towards to shit storm of crapness.

Planning

All I can do is fight. I’m doing everything I can to be as strong as I can mentally going into this. I’m meditating daily, I’m spending time outdoors, I’m planning my recovery.

But there’s still a part of me that is planning to fail. The chest freezer I bought and filled with food so Timm won’t need to worry too much about big shops when I’m in hospital is also a safety net of me thinking they’ll have food if I don’t make it. The days out and nice things I’m pushing myself to do are because I won’t be able to do much for a couple of months will also be nice memories for the what if.

Fuck, that’s dark isn’t it!!

The thing is that keeping those dark thoughts to myself gives them power, it allows them to take over my head and drown out anything good and so I say them out loud and yes, they’re depressing and horrible and messed up. But then I see them written down and can separate myself from them, I can see them for what they are; my anxious brain coming up with a list of what ifs and plans for the worst.

And once they’re out there, maybe I can let them go and go into this surgery as positive as I can be.

Wish me luck, I’m going to need it.

✌🏽& ❤️

Sam xx