Give someone a #BagofLife

Which would you choose?

colostomy association bag of life

The Colostomy Association are launching a crowdfunding campaign for Stoma Aid.  You can change the lives of thousands of people with a stoma across the world by helping spread the word about Stoma Aid by pledging a Facebook post or Tweet in our Thunderclap campaign.

Millions of people worldwide have a stoma – where an opening has been made on their abdomen which allows waste to pass out of their body. For these people, a stoma bag is necessary to securely, conveniently and safely collect output from their stoma.

However, thousands of people with a stoma across the world are forced to use tin cans, carrier bags and bits of cloth because they are unable to afford the cost of a stoma bag. In Papua New Guinea there are only two stoma care nurses in the entire country; in the Philippines a single bag costs a week’s wages.

For people with a stoma in developing countries, infection and hernias are extremely common as a result of them having to use tin cans and carrier bags. Many people are left unable to work or leave their home because of embarrassment and medical complications.

Each month, tens of thousands of stoma bags are thrown away in the UK as they are no longer needed. We will collect these unused bags and distribute them to people in need in developing countries across the world.

It will only take £22,000 to change the lives of thousands of people across the world. Help us spread the word about Stoma Aid and give someone a #BagOfLife.

Please get involved.

The last two years have been so hard, yet I am lucky enough to live in the UK and the NHS has supported me fully both with the actual surgeries but also with a constant free supply of ileostomy bags and a trained stoma nurse on call.  Sometimes I wonder how different my life would be if I lived in a country where I had to pay for my treatment and supplies.  But then I cannot even IMAGINE how it would be to have no access to ostomy bags, to live in a country where I had to make do with bags, plastic, cans or bottles.

It is heartbreaking to think about the people who are dealing with this every day.  To lose your bowel and have to have an ostomy is tough enough, but to then deal with feeling dirty, smelly and humiliated and have to create a bag out of rubbish is unbelievable.

Please pledge a Facebook message and a tweet.  It takes two minutes and means on 1st May when this campaign launches, it will do so with a huge boost on social media.

 

Thank you

Sam xx

Why I feel sorry for Katie Hopkins

I am a fan of The Apprentice, I am interested in business and marketing and also like watching people doing ridiculous tasks running around London.  I adore Nick Hewer’s unimpressed face and can’t help but get drawn into the drama of it all!  The contestants tend to be pretty much the most egotistical folk ever and the quota of all the dickish management speak you can imagine is high.  It is all good, entertaining, finger pointing, you’re fired, TV fun.

Yet it spawned the most hated woman in the UK, Katie Hopkins.

For a few years, I have tried to ignore the woman, her pantomime baddy character seemed needy and pathetic.  I thought her brand of bitchy, sour faced meanness would quickly fizzle out, yet she is just getting bigger and more offensive as time goes on.

I strongly believe in kindness.  I think kindness is the key to a happy life and I don’t think we need to be hard faced bitches who slag others off to be successful, it pains me to write this post, as try as I might, I can’t help but resort to name calling as this woman is just so vile.

katie hopkins vile

I think you should ignore the trolls, and that is what Katie Hopkins is, a troll.  She is making a living out of saying the most controversial and hurtful things she can manage, she is a bitch for hire and it seems she will abuse anyone to get her name in the media. She makes money from upsetting people, which must be a bloody awful job, and this comes from a woman who literally talks shit for a living!

I have ignored her as much as possible, through her fat shaming, woman bashing and racist comments.  I have turned the other cheek when she has bullied, berated and hurt so many.  I switched off Celebrity Big Brother when I found out she was appearing on it and I ignore her twitter rants when they appear in my feed.

This week I have had to pay the deposit for my daughter’s school trip, our dryer broke and the scouts fees were due, it’s a tough month money wise and all I can think is that it must be the same in the Hopkins household.  The bank balance must be low and so Katie dips into her pot of insults, closes her eyes and then randomly points at a celebrity news story and comes up with some tweet to offend the maximum audience.

Where I grew up if you spoke so badly about those around you, you’d get a pasting! Has Hopkins never heard the saying ‘if you’ve got nothing nice to say, say nothing’? She seems to relish in picking apart the flaws of the rest of society whilst skipping along, ignorant of all of her own.

Her comments on overweight people are so simplistic, her ego filled rants of eat less, move more are just another slap in the face to anyone who struggles with weight due to medication, illness or disability.

Not only did she throw out some mightily offensive racially abusive stereotypes, she then turned her malice on Angelina Jolie.  Now I am sure Jolie isn’t sat in her multi million pound home, with her beautiful children and most handsome man in the world as her husband weeping about the words of a two bit troll, but Hopkins’ words really upset me.

Angelina bravely spoke out about her decision to have her ovaries and fallopian tubes removed earlier this week, revealing that the mutation of her BRCA1 gene meant that she had a 50% chance of developing ovarian cancer.  As someone who talks about personal health issues, this struck a chord with me.  I thought she was courageous to use her position to speak out about ovarian cancer and her words about her children were really touching.  ‘I know my children will never have to say, “Mom died of ovarian cancer.”’ she said in the NY Times piece.

Talking openly about illness and treatment helps so many people.  When you have an illness, one of the worst things is feeling isolated and alone and to be able to read about other’s experiences really does help.  I know this because it helped me, and it is the reason why I keep blogging, keep writing and keep talking about IBD and invisible disabilities.  I do it knowing that I open myself up to nasty comments, to judgement and laughter, but I will keep doing it because I know I am doing good in the world.  No one should try to shame you into staying quiet, don’t be ashamed of your story, it will inspire others.

inspirational quotes

 

I suppose we could all make a lot of money from mocking others, I don’t think there is much skill in being a total bitch, just a huge lack of morals.  But at the end of the day, I know I do a good job, I help people deal with a really shitty time in their lives and I make a difference.  I am proud of what I do for a living, I wonder if Katie Hopkins can say the same thing?

It must be very sad and lonely to live your life making others miserable, I always tell my kids that those who bully and shout the loudest are usually those who are hurting the most and so I can’t imagine what pain Hopkins must be in to make a living out of vitriol and hate.  I feel sorry for the woman and hope one day she will realise that success isn’t about money, it is about happiness, love and respect.

Perhaps rather than regarding the woman with the hatred that she seems to thrive on, we should feel sorry for her.  

After all, it must be difficult to wake up every day and be Katie Hopkins.

 

Sam x

 

#MoreThanMeetsTheEye – Cassidy Little

Did anyone manage to catch Comic Relief People’s Strictly?  It was won by a great bloke called Cassidy Little, he was a Royal Marine who was seriously injured by a bomb in Afghanistan and though I am not usually a fan of Strictly, it was a great show and did a lot of good…

Anyway Cassidy lost a leg in Afghanistan and walks with a prosthetic limb, he quite rightly has a blue badge to enable him to park in accessible places.  I was sent this image from his Facebook page that is being shared around the globe as we speak and I just thought it was yet another great example of why campaigns like #MoreThanMeetsTheEye is so important.

He was parking outside the BBC after doing some filming, he had his blue badge on display yet when he came back to his car, he found this note accusing him of parking in a disabled bay when he wasn’t disabled.    “Photograph taken” they declare! Because of course, if you can’t see a disability in the flash of a photograph it can’t be there, right?

 

cassidy little disabled parking more than meets the eye

 

I could rant and rave all day about the cowardice and sheer egotistical ignorance of the person who wrote this note, but instead I will hand over to L/CPL Cassidy Little of the Royal Marines himself.

“Dear Sir/Madam,

Yesterday, while doing some filming with the BBC, I parked my vehicle in a designated disabled parking spot in front of the Meadows Park. I parked there because I do, in fact, have a blue badge, which is in date and registered to my name. This blue badge was on display for the ticket warden, other visitors, and indeed the world to see. Both Aspects of the blue badge were displayed, and I was parked between the lines.

The entire scene was 100% legal.

You can imagine my surprise when I returned to my vehicle after the shoot to find the attached note, from an anonymous local, lying on my windscreen. I have searched the note thoroughly for a return address or contact detail, but I am afraid that the coward left no such details. So I ask that I may respond with a very public note to him/her about my feeling on the subject.

If you could ‘Share’ my thoughts to this unknown ‘Parking Anorak’, I would be very much in your debt.

I think it is important to point out that the reason I went to Afghanistan was to support the western word, and its way of life. The entire reason that people are able to take advantage of a government for things like Blue Badges, Education, DLA, Tax benefits, Public services, police, NHS, Fire service… etc… is because people like me go to war to stop the bad people who want to rip that way. So when one of our brave soldiers, like me, returns barely alive, missing a leg, and finds himself in a position where he might need a blue badge, I don’t expect the recipients of these government benefits to act like spoiled little brats. Please remember that your way of life has cost ‘life’ to maintain, and in this case, ‘limb’.

Now, I have spent the last 4 years trying to behave like a fully-able person, because that is what you strive for when you have parts of your body traumatically ripped from you. You want it all to go away and for things to return to normal.

So if you happen to see me in trousers (which I have only recently become comfortable wearing), walking without a limp (which I have spent years trying to perfect) please keep in mind that my leg has not grown back, and the discomfort I live with every single day does not go away.

And if the writer of this letter wants further evidence of this, I will happily send them a picture of me, cleaning the blisters on my stump, for their next birthday.

Thank you for your time,
Sincerely,
L/CPL Cassidy Little
Royal Marines

 

 

Please click on this link to the original post on Facebook and share the heck out of this story.

We salute you Lance Corporal, let us all remember that there is #MoreThanMeetsTheEye

 

Sam xxx

"Feminist" underwear

I saw this post last week about ‘feminist underwear’ and was immediately intrigued.  “Feminist lingerie is the body positive underwear we’ve been waiting for” screamed the headline, now as you know I am both a proud feminist and also a big champion of women being body positive and so I clicked on the link, unsure as to what I was about to see.  Neon Moon is a kickstarter fund to create a feminist lingerie brand that does not sexualise or objectify girls.  All good so far, right?

“By taking the time to support Neon Moon’s campaign you are making a statement to the world that you want change, and your voice will be heard!” – Hayat Rachi, CEO and Founder of Neon Moon… Ok, fab, tell me more!

Using ‘real’ models these bra and knickers are supposedly promoted with an ethos of empowerment, body confidence and the non-objectification of women.  Models were asked not to shave and were chosen for their average sizing and there is no photoshopping in the adverts.

Neon Moon lingerie feminist underwear

Photograph – Via Pinterest Neon Moon

The premise of the bras sounds great, yet I have a few issues with the actual products.  They have no underwires and use soft cup bamboo fabrics and disturbingly the size Large is just a UK 12-14.

As a size 16 myself I am upset and to be honest, appalled, that this ‘feminist brand’ is not including women who are at the UK average size.  I think part of the issue with body issues and fashion is feeling that you are not catered for.  This brand can’t profess to be about body confidence whilst telling their audience that being a size 12 is large and if you are a 16 or over that you cannot buy this product.

The collection “does not incorporate any padding, push-up, or wired attributes, the Bamboo fabric and shape is designed to work around the body, instead of the other way around.”

I have a huge issue with the idea that underwired and more supportive underwear is in some way against feminism? I have massive boobs, these puppies need support.  Not to make me attractive to other people, not to present my breasts in a certain way, but because the flesh in my breasts feels better when it is in a supportive, underwired bra.

When we come to the idea of advertising in a way that doesn’t sexualise women, I feel a little confused.  Who is decided what is sexualised these days? If you are showing items of clothes that fit around genitals and breasts then you are probably going to get someone who finds any image a bit sexy.  Asking the models not to shave seems a bit patronising to me, as if hairy pits are the epitome of what a feminist is.  I am a huge fan of using models of all different sizes and shapes but it feels awkward for this company to have used women who aren’t a typical model 6 but then not cater to the larger women out there.

My other issue is that I feel the brand is suggesting that if you wear lacy or silky undies, that you are in some way not a feminist.  I can assure you that the style of my knickers does not affect my beliefs that men and women should be treated equally.  Women’s rights are about choice, and if I choose to wear a black satin bra or a ruffled lace knickers and stockings, it is not because I want to perform sexually for men.  I wear them because I want to, because they make me feel beautiful.  The idea that I have to wear bamboo, ugly, ill fitted underwear to be a strong woman is laughable!

This feels like a company using the idea of feminism to sell a product and that kind of sucks.  The company have reached their goal on the kickstarted page and so perhaps they will develop their ideas and sizing further, but I am afraid currently Neon Moon is not for me, not only because I can’t fit my ass in their pants and that I would knock out small children if I attempted to wear their bras but because I just don’t like the product.

I am ALL about the body confidence, but that means choice.  I can choose to wear the sexiest underwear out there, it is not a reason for others to make a judgement on me.

Size wise, all companies need to realise that they can’t refuse to cater for a large section of society without pissing those people off!

What do you think?

 

Sam xx

 

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.

timm and sam cleasby sheffield

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.

timm and sam cleasby wedding

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.

sam cleasby blogger writer sheffield

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’.

setting goals

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.

sam cleasby ibd blogger

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.

ibd blog crohns and colitis uk

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.

sam cleasby ibd blogger

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!

crohns and colitis awareness week

 

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!!

crohns and colitis uk south yorkshire

 

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.

child carers parents with disability or illness

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