Hernia surgery tomorrow

So the big day is tomorrow! I am in at 7am for surgery on my incisional hernia with an overnight stay.  I started 2015 with two wishes, I didn’t want to have an operation or move house this year.  Unfortunately it wasn’t to be…

My hernia is very small and usually quite flat but when I exert myself, it pops out and is sickeningly painful and so it is stopping me from exercising and doing the things I want to do.  I have such a busy year with work and I need to be in good physical condition to manage it all.  Hernias only get worse with time, they won’t improve without surgery and so I know that this surgery is the right thing to do.

But I am nervous as hell.  A few people have said that “it’s only a small surgery” and that “it’s nothing compared to the last two”, they are right and I know they are only trying to set my mind at ease but I really am terrified and feeling anxious and sad about this operation.  

The thought of having another general anaesthetic is scaring me, I know they do it all the time but the risks are there.  I’m frightened at the thought of just not waking up.  I’m also scared of there being complications with the operation, but I have Mr Brown operating which definitely puts my mind at ease though I’m still nervy and shaky.

Timm is taking me in to hospital at 7am and I’ll be in overnight. If you follow me on Twitter or Instagram or like me on facebook then I will probably be posting on there before the blog.

I am extremely anxious and feeling weepy and sad but I am going to pull on my big girl pants and I’ll be ok. The kids are worried as they always are if I have to go into hospital but Timm is going to bring them to visit tomorrow.

Our amazing friends Caroline and Jamie are having the kids tonight so we don’t have to rush with them in the morning and they are looking after them tomorrow so Timm can stay with me. We’re so lucky to have such fantastic friends who are always there for us and offer to have the children whenever we are in need. I can’t thank them enough and love them very very much.

So I’m off now as I think I’m chuntering on…

Thanks for all the lovely good luck messages as well as the cards and flowers.

✌️& ❤️

Sam xxx

Aiming high

My husband is one of those bloody annoying people who always seem to be a high achiever, you know those gits who just do well in everything they try? When we met he was working in the music industry as a sound engineer, he went on to work for some amazing bands and then to be the tour manager for Arctic Monkeys, he won Tour Manager of the Year before having a change of career.  He then became a photographer and now is renowned for his amazing talent and runs (with his pretty awesome wife) The Picture Foundry.

He wanted to ‘keep his hand in’ the music industry and so years ago became involved with Tramlines, he is now the production director and helps to run Sheffield’s biggest festival.

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One night he went to the pub with his mate James and together they came up with an idea for an arts group that was about nature, play and upcycled fun… Five years later, their company Responsible Fishing UK just got their SECOND year’s contract at the UK’s biggest holiday camp taking the brilliant project Camp Cardboard to inspire young people to be creative and families to spend time together and play.

Do you hate him yet? Only kidding!

The reality is that he deserves every triumph he gets.  He does all this with a kind hearted energy, fun and a great attitude.  He does all this because he sets goals, aims high and goes for it.  He is without doubt, the hardest working person I know and has the most self belief I have ever seen in a person!

My lighthearted dig at Timm is a joke, but it does show the side of humanity that seem to want to hate on the people who achieve in life and that’s what todays post is about.

When I got really ill in 2013 and had the surgery to remove my colon, I felt like my life was over.  I couldn’t see how the path I thought I was going to take could be an option to me now.  I was scared, anxious and fed up.  After having a massive cry and slowly learning to adapt, I did what we Cleasbys do best.  I sat down, thought of what I wanted and set my mind to making it happen.

We are by nature ‘doers’, Timm calls me itchy feet as I am always looking for the next move, the next adventure.   We always have a plan for the next year and then a long term plan, sometimes these change and move, but it makes me feel better to have an idea of where we want to go and also keeps us, as a couple, on the same page.

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Because of my illness, I have been better with the planning than the action for the past few years, and before that my plans were raising three young children whilst Timm was away on tour.  We had three kids in four and a half years and he was touring for nine months of the year and so you can probably imagine that my planning revolved around the whirlwind of semi single parenting!

But now things are starting to look up for me health wise (let’s not talk about my surgery on Saturday, eh?!) and my bambinos are getting that little bit older.  I know they still need us an awful lot but at 10, 12 and 14 they are so much more independent.  This is giving me more time to think about what I want.

I know what I want.  But voicing it is where I falter.  I worry that people will mock me, laugh at me or think I am too big for my boots.  We British love an underdog and don’t tend to like the confident, outspoken extroverts that shout about their goals, which is funny as Americans sometimes seem to be the opposite.  The american dream makes it ok to say ‘I want to be the best’ whilst the Brits look you up and down and wonder who you think you are!

But I am going to take a leaf out of my husband’s book.  He believes in setting goals and aiming high, then getting that shit done.  This isn’t about being a bitch or a hard faced business man, it isn’t about The Apprentice who show high achievers as being pretty much the worst people on Earth.  It is about remembering that life is short and we are only here once.

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Not everyone wants to be a CEO, a brain surgeon, a millionaire… success isn’t about money.  But we should all be thinking about what do we really, really want in life.  Whether that is to spend more quality time with family, to travel the world, to go back to university, to learn to tango, to speak another language…

Or to write a book…

Since I was a child, I have loved to write.  I always wanted to be a writer but not going to college or University felt like a huge barrier to me becoming a writer.  Having babies at 19, 21 and 23 didn’t help my confidence either.  I’m always scared some super clever academic type will laugh me down if I speak the words ‘I want to write’, yet here I am writing this blog that is read all over the world.

And so I am aiming high.  I am writing a book, it is a continuation of this blog with parts of my story, the lessons I have learnt and a self help element for people to conquer their difficulties and be happier, more confident and more fulfilled.

I feel like a bit of a dick writing this down but sod it.  I want to write a best seller, I want to travel the world and maybe live for a while in Sydney near by big sis, I want to earn enough money to support Timm for a while, as his goals include playing more in the woods with James and sexing up motorbikes, I want to make a difference to people worldwide, I want to leave a legacy that will outlive my rotten bowels and chronic illness.  I want to be on Oprah FFS!

Are these goals too high? Yeah, probably.  But my retched colon nearly took my life and so why shouldn’t I aim for the stars?  What is the worst that can happen?  Timm and I have a motto that we would rather regret the things we have done, than the things we have not.  I would rather put myself out there and try to write a book and it fail miserably than to spend my life thinking ‘what if’.

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Aiming low and expecting little is a terrible option.  If you never strive for more, how will you achieve?  Again, this isn’t about money, it is about assessing your priorities and thinking about what you want.  We all have to work and so shouldn’t we aim to work in a job that makes us happy?  We all want to spend more time with the great people in our lives, yet often end up putting it off due to other commitments.  But if you make that a priority and voice it as your aim, you are more likely to do it.

I’d like to ask you a question… If I was your fairy godmother and could wave a magic wand right now and you could have one personal wish granted, what would it be?  I’m not talking about world peace, end to hunger or those things that we all would like to happen.  But if I could put you in a different situation, what would that look like?

Would it be a change of career, a change of destination, a better relationship with someone in your life?

Whatever that something is, ask yourself, what is stopping you from striving for that?

Make lists, set goals, aim high, think big.

You have one life and only you can make it what you want it to be.

Five years ago Timm and I set a goal for him to stop touring and to start a photography business, it was terrifying walking away from a good wage packet but we knew that his touring was making us all unhappy.  We made plans, worked hard, had some EPIC struggles but we managed it and we are now happier than ever.  Eighteen months ago, after a chat with the marvellous Faye at Keep Your Fork, I set a goal to start writing a blog about my experiences, it was a great way for me to start writing, today I sit here with a worldwide audience and well over 2 million views.

Some days, my illness and fatigue means that my plans are much smaller, I plan to shower, to do a couple of hours work, to watch a film with my kids.  These days aren’t failures, they are my tiny triumphs on a longer path to what I want in the future.

I am right at the start of my journey with this book and want to thank everyone who has sent their love and support.  It is pretty scary but knowing how much good I have done with my blog pushes me forward and makes me want to write something amazing that can make a real difference.

So this week, think about want you want from life.

Think big, aim high and be happy.

 

Sam xxx

I've been diagnosed with Ulcerative Colitis… Now what?

So you have just been diagnosed with Ulcerative Colitis… Now what?  Well you are probably a bit shell shocked and confused as to what the hell this disease is.  You are frantically googling and recoiling in horror at the words ‘increased risk of cancer’ and your mind is boggling with all the different treatment options.  I know this feeling, as this was me over ten years ago.

I had been losing a lot of blood and had bouts of diarrhoea but as my daughter was only 9 months old I thought it was probably piles.  But it got worse and worse till I was losing so much blood, the toilet bowl looked like a massacre had taken place.  I ended up passing out, I was so anaemic and dehydrated from the bleeding and diarrhoea and then taken by ambulance to the hospital, after a lot of tests I was eventually diagnosed with Ulcerative Colitis.

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I was given a prescription and sent on my (not so) merry way feeling completely adrift and unsure as to what I was facing.  Initially I was happy as I thought it was going to be a diagnosis of cancer, but suddenly I had to learn about this disease that has no cure and that would affect me forever.  I was devastated.

Over the next few years, I slowly learnt more and more about the different drugs, the side effects, the flare ups and remission periods.  I eventually discovered the support of IBD nurses and learnt that I had to take control of my illness, I had to learn how to adapt my meds according to how I felt.  It was a very difficult task, before this point if I had ever been ill, I would go to the GP, get a diagnosis, a prescription, take the pills for a set time and then get better.  Suddenly I was told to self manage my illness, to know to up the dose of some drugs at certain times, to know when to call for help and when I should just deal with it.  It was a frightening and confusing time.

The biggest change for me was discovering that the hospital had an IBD nurse.  This took a few years as I discovered three years in that I wasn’t even under the care of the gastro team at the hospital! (But that is a WHOLE other story).  As a sufferer of IBD (either Crohns Disease or Ulcerative Colitis) in the UK you should have access to a specialised IBD nurse.  This is someone who you can see regularly, have phone contact with and who is there to support you through your illness.  The team at my hospital became a lifeline, a friendly voice on the end of the line when I was confused and needed support or advice.  I am amazed at how many people I speak to that do not know they can see a specialised nurse!

I know you are facing this terrifying time, but you have to take control.  You have to educate yourself, find out as much as you can and be your own advocate so you can ensure you are getting the best treatment.  It is easy for patients to get lost in the system, the NHS is amazing, but it has it’s issues due to the pressures put onto it and so you must make sure you are playing your part and not being a bystander in your own health.

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All the different medication options are mind boggling, it is so confusing to know what is the best course of action.  Take advice from your doctors, registrars and consultants, listen to your IBD nurse, but do your own research too.  Do not be afraid to ask questions, it is OK to be unsure and to remind medical staff that they may deal with this every day, but for you it is new and overwhelming.

If you are unhappy with your care, you can ask for a second opinion.  Simply go to your GP and talk through your options, after ten years under one hospital and feeling many times that I was unhappy with my care, I decided to move hospitals.  It was the best decision I made and under the new teams at a different hospital I am so happy.  I feel supported, informed and cared for.

When I was first diagnosed, I had never heard of the disease let alone know anyone who had it, there was little online and I felt so isolated and alone.  I was embarrassed to talk to my friends and family about it as I didn’t feel comfortable telling them about my bum, blood and shit! (Oh, how times have changed, eh?!)

At times of flare ups I would lock myself away, not go out or visit friends.  On one occasion when I ventured out to a friends house during a flare, I stood up from her dining table after having a coffee to see that I had bled so much that it had gone through my clothes and onto her furniture.  I was absolutely mortified.  How could I tell her that blood from my arse had leaked onto her (thankfully plastic) chairs?  Instead I covered it with my bag, grabbed some cleaning wipes from her kitchen side and said I had spilt my tea.  Then I left.

Remembering this event now, I still feel flame cheeked and filled with embarrassment.  I went home in floods of tears, vowing never to go out during a flare again.

I later spoke to the friend, who thought she had upset me as I left so suddenly, I admitted what had happened and she was so warm and kind, she hugged me and reminded me she was a mum too and was used to dealing with body fluids.  She made me promise that if it ever happened again, that I would just tell her and that it just wasn’t a big deal.  She reminded me that I had once cleaned up her sick after a bit of a crazy night out and let me know that all those things I was worrying about, that she would be disgusted, or would laugh, or that she would not want me round, that they were in my head and she was my friend and would always be there for me.

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My main message in this post is that you need to speak out, you need to talk to someone about your illness.  The biggest symptoms of IBD in my opinion are shame, embarrassment and isolation.  I swear that talking to your loved ones will help, they are feeling as bewildered by your diagnosis as you are and probably feel upset, worried and useless.  You have to learn about your illness so you can help your loved ones understand too.

There are some amazing websites about now with so much information, as well as lots of blogs and youtube channels, Facebook groups and people like me who will openly talk about life with IBD.  Utilise these options for information and support, you are not alone, there are almost 300,000 people in the UK with IBD and 5 million worldwide.  I know it feels like your world has ended, that the life you thought you were going to lead has gone, but I can tell you this, you ARE NOT ALONE.  There are many out there feeling the same as you and you can learn to LIVE with IBD, it might change your path but it does not end it.

Take a look at charity Crohns and Colitis UK, a great source of advice, information and support and also check Facebook groups, forums and blogs for support.  One friendly hint is to remember that the ill people are mainly the ones talking online, the fit and healthy ones are off living their lives, so just be mindful that forums are not the best overview of the IBD population!

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I know you see many stories, mine included, that talk about surgery, ostomy bags and all many of scary things.  Around 1 in 4 people with Ulcerative Colitise will need some form of surgery (more with Crohn’s disease) and so it is an issue, but do remember that 3/4 of people with UC will not have surgery and will be managed with medication.  Whatever path you have to go down, living with a chronic illness such as UC is a lifelong issue.  It will change some aspects of your life but this diagnosis isn’t the end, it is just a change.  You can still lead a wonderful, full and happy life, I know it can feel, especially during a flare, that your illness feels all consuming and that it takes over every aspect of your life, but stay strong.

I have been writing about life with Ulcerative Colitis since 2013 and so do take a look through the site, specifically this post of the A – Z of IBD that has some good information and take a look at the So Bad Ass Facebook page and twitter page to chat with other people with IBD.

You can always contact me if you want to chat privately, but please remember that Im not medically trained and so my advice is always anecdotal and from personal experience, if you have any urgent medical issue, you should ALWAYS speak to your doctor or nurse and NEVER just take advice from the internet!

 

Love Sam x

Crohn's and Colitis South Yorkshire Dinner Dance

I am involved in the Crohns and Colitis UK South Yorkshire group and in October this year, we are holding a super exciting dinner dance (ticket info available soon) at Oakwell Stadium in Barnsley.  There will be live music, a DJ, guest speakers, footballers and a raffle (plus extra things to be announced closer to the time).

If any of my amazing followers can help with either free stuff, raffle prizes or donation of time, that would be AMAZING!!

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Crohn’s and Colitis UK​ are a charity close to my heart and we want to raise a lot of money for research and support but also allow people to make connections with others in South Yorkshire and to raise awareness of Crohns and Colitis.

The volunteer group is entirely run by people with IBD or their family members and so as you can imagine, it is difficult when we are all dealing with our own health issues, but we do it to make a difference, so PLEASE get involved.

If anyone can help or donate a prize, then please get in touch.

You can find out more about Crohns and Colitis South Yorkshire on the site here, like them on Facebook, or follow them on twitter.

 

Sam x

 

Happy Mother's Day to all the sick mums

When you have a child, you make this silent vow, a promise to yourself that you will protect, love and adore this baby and always be there for them.  And so when something makes that difficult, when an unplanned illness or injury makes you falter at the most important job you have ever had, it is tough.

My kids have grown up with me having Ulcerative Colitis, Charlie was 3 and Ellie was 11 months when I was diagnosed.  Thom was born a year later, my body having fought against his during the pregnancy where I had awful flare ups that made me anaemic, made me pass out, made me lose weight and eventually be hospitalised on bed rest and blood transfusions.

 

sam cleasby mum parent blogger

They have grown up with a mum who runs away from shopping trolleys in supermarkets to go to the loo, who always has wipes in her bag way past a time when they could be deemed necessary for children.  They have seen me so ill in bed that I didn’t have the energy to help them get ready for school, they have had to visit me in hospital more times than is ever right for a child, they have stroked my hair as I lay in bed with them and brought me heat pads and pain killers when I couldn’t manage myself.

They have learnt to make their own breakfasts, lunches and dinners.  They come running asking “mum, are you ok” when they hear my fast footsteps to the bathroom and the slam of the door.  They cried when they saw me in pain, wiped my tears away before their own and cuddled me, all piling into my bed to watch a film because they know that is the best I can give at that moment.

When they shied away from me after surgery, because they were afraid of hurting me and thought my stoma was weird, it was the toughest time.  And now knowing that my bambinos have had a harder childhood because of my illness, it breaks my heart.

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Having a chronic illness or a disability that sometimes stops you doing all the things you want to do can feel like having one hand tied behind your back, it can feel like you are at a huge disadvantage and believe me, I know the feelings of anger, frustration, hurt and pain when as a mum, you can’t give your kids everything they need.

But I have to believe that my illness has also given my children positives, that the lessons they have had to learn will do them good in their lives.  I see it already in my loving, attentive and caring children.  I see it in the fact that despite the fact that I talk about poo for a living, they aren’t embarrassed!  They are so compassionate and empathetic and they have an insight into invisible disabilities as well as visible disabilities than many adults don’t.  They know that the richest you can be is when you are happy and surrounded by those you love, that your health is vital as this is the only body you get, they know that life sometimes gives you things you don’t want, need or ever even dreamed of but that you have to deal with it all through talking openly, sharing your feelings, occasionally weeping in a snotty mess, then pulling on your big girl (or boy!) pants and making the best out of the situation.

And so to the mums who today are celebrating mother’s day who have had to, on occasion, put their health before their child’s immediate needs, who have a heavy heart filled with guilt when they think about the things their children have seen and dealt with, to those who are cared for in part by their children, to those who have a disability or illness that affects the whole family…

kids visiting sick mums in hospital

To you mums, I salute you.   I raise a glass in solidarity to all who are just doing their best to get through each day.  I feel your pain but remind you gently, that it isn’t physical perfection that makes for a great momma, it is love, kindness and the ability to hug, kiss and raise amazing young people.

Our babies may not have the upbringing that we dreamt of, but they have us now.

Today hold them a little closer and pat yourself on the back for being enough.

 

Love Sam x

Happy International Women's Day 2015

Hope you have all had a fantastic Women’s Day 2015.  I have had a weekend with friends and family and LOVED seeing my Facebook and Twitter feeds filled with wonderful stories of inspiring women and feminism.

I thought I would share my talk from last year’s International Women’s Day in Barnsley where I spoke about living with my ileostomy and how I overcame the massive changes that surgery brought me and how it affected my self esteem and body image.

 

Much love

 

Sam x

Hernia date booked!

Very quick update about Harry the hernia… I blogged about getting the news I was being treated at a private hospital.

Well, my letter has come through and I’m booked in for the 21st March! Just under 3 weeks time.

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Though I know it’s a routine operation and I trust my fabulous surgeon Mr Brown implicitly, I am very nervous. I think psychologically, I associate hospitals with so much pain and missing my family and so my anxiety levels are quite high thinking about surgery.

I even thought about cancelling, I just got myself in a bit of a panic and was thinking that the hernia isn’t that bad and that I could live with it. The reality is that it isn’t as bad as the last one. But it is uncomfortable every day and stops me doing things. It’s a sharp sickly pain when it pops out but because it’s not agony, I was thinking maybe I should wait.

I got over myself though and know I need this surgery to help me feel like I’m back on the road to recovery and so I will be going ahead.

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I’m hoping that the change in environment may help my anxiety. I’ve never been to this hospital before and so it’s a different feeling to going ‘back’ to the Northern General. The place looks gorgeous and I’ll hopefully only be in for one night.

As with all surgeries, I have this panic that I won’t wake up. But I trust Mr Brown and really do feel like I’m in the safest hands and so I need to try to let go of that fear and accept that I will be cared for.

The kids are upset about me going back in.  They always get very concerned when I have to go into hospitals even if it’s just for a clinic visit, as they are afraid I will stay there for a couple of weeks.  But I have assured them that it will be a brief stay, the doctors say one night in, and this hospital doesn’t have set visiting hours and I will have a private room so they should be able to visit me whenever they like.  This really helps Timm as trying to arrange visits and school runs was quite stressful for him before.

I am having an operation on an Incisional Hernia, which means the weakness is where they cut me for the stoma, this is my second hernia op in a year and unfortunately the chances of it coming back are quite high.  But I will plod on in the hope that one year I will go a full 12 months without any surgery!!

 

I will, of course be blogging up to and after my surgery, so do keep reading!

 

Sam x

What a week!!

So, this week has been crazy!! After my post of the letter to the woman who tutted at me for using the disabled toilets went viral, the website has had over 2 million views and I have been in newspapers, websites, radio stations around the world and even had an appearance on BBC breakfast.

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I have been on BBC Sheffield, BBC WM, BBC 5 live, Spin 1038, Rother FM and Hallam FM.

I made it over to Australia and appeared on both The Telegraph and News.com as well as countless smaller news outlets.

Lots of Danish and Swedish websites ran the story too. Plus too many sites than I can mention have shared, reblogged and discussed the story as well as the Metro and Huffington Post.

I have been in the Sheffield Star, daily Mail and the Mirror.

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But please don’t think I’m bragging. I am just so pleased that my story, my little blog, my baby has made it into the lives of so many people.

From the start, what I wanted was to make a difference. To help those with Crohns and Colitis to not feel alone, to know there are others who feel the same, suffer in a similar way and that there are a community of people who care and want to make their lives better.

To know I’m part of that, that I’ve made people feel a little better is amazing. I am so proud.

Now, pride is a sin, (I remember this from my Catholic youth!) but I don’t care! I am proud that I have turned the worst two years of my life into something amazingly positive, something that has made a difference to people around the world!

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I have received messages from thousands of people telling me their stories. I am honoured that all these people feel they can share the personal details of their illnesses and feelings. I am reading every single comment and email and trying to reply to as many as I can.

I’m in shock to be honest, the past week has sent me from a blogger sat talking about poo in her office to the couch of the UK’s top breakfast show! I am a little overwhelmed by the attention but so blessed that this has happened.

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I just want to thank every one of you. Every single read, like and share is making a difference to millions of people. This issue is bigger than the IBD audience that I had originally planned it for. Messages from people with all manner of invisible disabilities have touch and I have learnt a LOT.

Moving forward from this viral publicity, I am more motivated than ever to make a difference. I am in talks with three different charities about how I can help to better the lives of my peers and I am so excited.

I know I come across as this confident, outspoken person who is fearless… Inside I am a 33 year old mum, I am a wife, sister, daughter, friend. I was a teenage mum and constantly worry and question myself. I have a chronic illness that will never leave me and I’m always exhausted. I worry people will judge me on my lack of further education and think I’m stupid. I’m a size 16 woman living in a world where women are judged my their size not their character.

But I’m also a writer.

I want to make a difference.

I want to change the world.

And so this past week has taken me, and all my flaws and weaknesses, and taken me one step closer to my goals.

Thank you so much. You’ll never know how much I appreciate every read, every like, every share, every comment.

You lot are awesome.

Thank you

✌️& ❤️

Sam xx

Poo pourri review

Who has seen the Poo Pourri campaign? I LOVE it, it’s a brilliant advert that after I fell on the floor howling, I wanted to try it straight away! Take a look…

With over 31MILLION views on YouTube, I’m not alone!

Here’s what they say.
“When you spray Poo~Pourri into the bowl before-you-go, our proprietary formula creates a protective barrier on the water’s surface. This barrier is designed to trap unpleasant bathroom odors beneath the surface and keep them out of the air. All you’ll smell is a refreshing bouquet of essential oils!”

poo pourri for ibd

I can honestly say this product works!!! I thought my crazy explosive jpouch poos might be Poo Pourri’s nemesis but even for me, it works. The bathroom actually smells better when I leave!

I know it seems expensive, but it really lasts. I got my bottle for Christmas and I have barely used a quarter of a bottle and that’s with me going 8-10 times a day!

I take it out with me if I’m going to friends houses or out in public and it’s just an extra little safety blanket to know that I’m not going to feel embarrassed of the smell. This is super gross but because my digestive system is cut short, food isn’t broken down in the same way and so sometimes my poo smells a bit like vomit! (YUK!)

I love Poo Pourri and think they need to do an advert for people with IBD, ostomies and Jpouches!!! (If you need someone for that ad, I am IN Poo Pourri!!!!) I actually left a review for them, something I never do, as I am so behind this product.

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Smell can be a massive issue with people with IBD and a product like this can help a lot. I recommend this all the time and wholeheartedly think you should try it. They do a ‘stink free guarantee’ and if it doesn’t work, they’ll give you your money back!! How’s that for confidence!

Give it a try, you won’t regret it!

Sam

 

This review is not paid for by Poo Pourri or endorsed by them, it is a genuine review of a product that I love.  If you buy it through the links in this site (the amazon ones), I will earn a few pence for recommending it.  It will cost you no more but helps fund this site a teensy bit!

Thanks x

 

More Than Meets The Eye – Campaign for Invisible Disabilities Awareness

After my post on using accessible toilets with an invisible disability went viral with over 2 million views, I knew I had to harness this amazing audience and do something good with it and so after spending the week talking to people with disabilities all over the world and also Disability Charity Scope, I am over the moon to launch More Than Meets The Eye, a campaign for invisible disability awareness.

In the open letter to the woman who judged me for using accessible toilets, I wrote “I know you saw me running in, with my able bodied legs and all. You saw me opening the door with my two working arms. Without any visible sign of disability.  My lack of wheelchair may have suggested to you that I was some lazy cow who didn’t care. You may have seen my face blushing as I caught your eye and assumed I was showing guilt at blagging the disabled loos. You tutted loudly.”

I’ve received THOUSANDS of messages from readers who have faced similar judgement from members of the public because of their own invisible disability. People with cancer, prosthetic limbs, autism, Tourette’s, brain disorders, bladder issues, partners with dementia and so many other issues… All saying the same thing.

That there is more to them than meets the eye. Their disabilities may not be visible at a glance but they are so real and they make their lives difficult at times.  That not every disability requires a wheelchair and that using an accessible toilet or disabled parking space isn’t a luxury or a privilege, it is a necessity for them to lead their lives.

I have learnt so much from the people who have contacted me, I had a chat with amazing charity Scope and they agree that more needs to be done to raise awareness of invisible disabilities…

And so begins this campaign… #MoreThanMeetsTheEye is my way of making a stand for all the people who contacted me and for the millions around the world who live every day with an illness or disability that affects their lives but is unseen by others.

People with an invisible disability don’t want special treatment, but for society to be more aware that they exist, for everyone to think twice before judging someone who looks seemingly able bodies, and to be more compassionate and kinder to their fellow human.  More Than Meets The Eye is a way to bring the discussion of Invisible Disabilities into the lives of everyone.  To share real stories and explain how it is to live with an illness or disability that can’t easily be seen.

No one expects for the public to know about every single disability and illness but rather than immediately judging someone you see using accessible toilets or disabled parking, stop and remember there is a human being on front of you who may have many different issues that they shouldn’t have to explain to you.

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I am sharing with you some messages I have received from readers of So Bad Ass. Please join me in sharing your own stories using #MoreThanMeetsTheEye or perhaps you can take a photograph naming your invisible disability or how you feel?

I will be doing a bit of blogging and writing for Scope in the coming weeks and really hope to raise their profile as they do a fantastic job at supporting people with disabilities as well as educating, raising awareness and working hard for equality.

This is an issue for millions, so many people are sharing their own stories of being judged, but I genuinely don’t think that all the ones doing the judging are nasty or mean people!  I think they believe they are defending the rights of those who they think are entitled to use accessible toilets or disabled parking spaces.  I have had so many telling me that they have been the person tutting but it is because they see someone seemingly able bodied and think they are helping.

The reality is that there are so many reasons why people need extra support and we all need to be more aware that invisible disabilities exist on so many levels and that judgment just makes lives more difficult.

Please take a look through some of the images below and take the time to read real quotes on how it feels to be judged for something that is beyond your control.   The first one is from an email I received from a mum talking about her little girl.

“She was born at 26 weeks and had to have part of her bowel removed.  We use disabled toilets and the disgusting glares and tuts we get are unreal.  I refuse to explain my daughter’s complex health issues with strangers so they usually waltz off believing they’ve put the world to rights.  In actual fact they’ve just made a disable little girl and her family much more anxious about going out.”

Read that and remember it the next time you see someone seemingly able bodied using an accessible toilet and think you are helping by telling them off…

Take a look through these quotes and I hope they will make a difference to the attitudes of society, I would love to see these printed in and around accessible toilet areas! Together we can make people realise that there is #MoreThanMeetsTheEye

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For every person with an illness or disability that can’t be seen immediately, I want a brighter future, a happier future and a kinder and more compassionate future.

Please share and get involved, I am so overwhelmed at the viral attention and think we have got people talking, but we can go further with #MoreThanMeetsTheEye and actually make a difference worldwide!

You can share your own stories of Invisible Disability using #MoreThanMeetsTheEye on Facebook, twitter and instagram or share them with me through my contact page and I will display them on the More Than Meets The Eye Page here on So Bad Ass and on all my social media.

You can find me on twitter @so_bad_ass, Facebook and Instagram.

Let’s make a change and get people talking.

✌️& ❤️

Sam x

 

You can contact Scope on their website or by phone on 0808 800 3333 or email at