Well, that didn’t take long…

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So, I’m back. My ‘break’ lasted 12 days.

Honestly, I’m glad of the downtime.  I’m still not great mentally and emotionally, lots of things in my life are still totally up on the air, but I realised that staying away from this place wasn’t actually making me feel any better.  If anything I felt worse.

This is my sanctuary, my place to verbally vomit all the stuff in my head out into the world.  When I don’t have the ability to share here, my head feels very, very full.

Things aren’t great.  I’m still struggling health wise and waiting for my surgery date to have my Jpouch removed and a permenant ostomy.  I’m going to the loo a lot, having accidents and lots of crampy pains.  I know the surgery is the right way forward but I’m terrified. It’s a big op and I’m scared about all of it, not least that it’s just so permenant.

At home, we are still in the midst of a banking/mortgage/house stress nightmare!  I won’t go into it except to say that getting a mortgage when you’re both self employed is more complex than the Krypton Factor and Mastermind put together.  This is just leaving me feeling really anxious and unsettled.

Finally, the book thing. Well, I had a bit of a breakdown over that. I felt really disheartened, like I’d been found out as a fraud and that I couldn’t really write.  I felt useless and silly.  I felt that I needed to stop being stupid and fanciful and just get a proper job.  I couldn’t face writing anything, every word on paper made me shrink back and cringe.  That old demon on my shoulder whispered that I was stupid and foolish and that everyone was laughing at me.

The past couple of weeks have been hard.  There’s been times that I just couldn’t breathe, I felt so overwhelmed with sadness and fear.  I still don’t feel great.  I feel like I should get a fucking Oscar for the show I’ve put on for family and friends.  There were times when outwardly I was laughing that I felt like shaking them and screaming “THIS IS ALL AN ACT!!! IM DROWNING!!!”

But really, I think it’s actually done me good to force myself to get out and see people, to go to parties and have friends over. Because when I’m out, I can’t let the sadness take hold, I have to jolly myself on and that, if nothing else, is a lovely distraction.

Every time I have made myself be sociable, no matter how much I dreaded it beforehand, I felt a million times better after.  Every physical connection to others has benefited me mentally. And that’s something to take away, I think, that it’s easy to want to hide and weep when you’re feeling down, but making yourself see your favourite people, even if you don’t talk about how you’re feeling, is good for the soul.

I read all your kind messages on my Facebook page and Twitter and they meant a lot. Thank you and sorry for not replying to you all.

There was one message that caught my eye in particular.  It was from my friend Curtis Woodhouse, Curtis was a professional footballer and then he decided that he wanted to be a boxer.  He was mocked by so many who said that he would never make it.  He kept on going despite all that and he became the British Light Welterweight champion!  He never gives up and so his message made me think that I needed to be a little more like him and keep going.

curtis woodhouse

“Sam, just a quick message, an author called Donald McRae wrote a book called Dark Trade, it got knocked back by every publisher that he approached, he believed in the book so kept going with it, finally it got picked up, I think it was about 15 years ago, it’s still selling now, Its one of the best selling sports books ever, Don has won award after award for his writing, he’s the best of the best, go online and read up on the book and a bit about Don, might inspire you to carry on or it might not, you can’t just give up because publishers don’t think the book will sell, if you give up on it why shouldn’t everybody else?

Suck it up, still got a few more rounds of fighting left in you x”

curtis woodhouse sam cleasby

And so here I am back on the blog.  Because (and don’t tell him this, because he’ll get ever such a big head) perhaps Curtis is right, if I give up on myself, why shouldn’t everyone else?

This girl may be a little crushed, a little damaged and a little sad right now, but she definitely has a few more rounds of fighting left in her.

 

Sam xxx

I think I need a break…

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I started this blog two and a half years ago and I have loved every second.  Starting from a humble desire to share my hospital visits and explain my illness to family and friends, it has seen me document every minute of my journey through ulcerative colitis, three surgeries, the loss of my large intestine, one stoma, two hernias and one Jpouch. As well as all the emotions that come with these huge, life altering events.

Today I sit here, awaiting my fourth surgery in two years and it’s a biggy.  They’re going to remove my Jpouch, form a permanent stoma and get rid of my bottom. They’re also going to attempt to sort out all the gynae problems that have been caused by all the surgery.  It’s a long and complicated surgery and I am very anxious about it.

I’m scared, angry and upset that this is happening. I’m so fed up of my body being this broken thing that affects everything. I’m tired of being a burden to those around me.  I’m sick and tired of being sick and tired.

I also sit here feeling disheartened and disappointed in myself. I’ve spent the last 9 months working with an agent and many publishers trying to get my book about IBD, ostomies, disability and how to deal with the shit that life throws at you out to the public.  And yesterday I got my last ‘no’ from the 12 publishers we have approached.  And I’m crying.

I’ve worked really hard because all I’ve ever wanted was to use the massively shite life I’ve been given to help others. I love my blog.  I really do. Every message I receive makes me believe in myself a little more. Each one reminds me that as I sit tapping away in my bedroom, that millions of people in the uk and around the world are struggling too, and that my words might just help a tiny bit.

You can’t imagine how much that means.

But right now, between the stress, anxiety and sheer terror of facing this next operation and the utter heart breaking disappointment of not getting published, I think I need a break. We are dealing with a complicated house move at the minute too, which isn’t helping.  We’re hoping to move house but dealing with banks and mortgages when you are both self employed is so complicated and stressful and on top of everything else, I just feel so unsettled and without a solid base.

I feel like a failure. In so many ways. I feel my body is failing me. And I feel I’m failing my family and this wonderful audience by not reaching this goal of the book.  I struggle with the idea that I am ever good enough, the chip on my shoulder is that I’m not smart enough, that I don’t have a ‘proper’ job and that I just don’t have the ability.  I know that books get turned down every single day and that I am nothing special in that way, but the idea that I have wasted all these months hurts.

I feel so low that I can’t offer even a tiny glimmer of hope to readers at the minute.  I feel I’m in this dark place that won’t allow me to say something helpful, something inspirational, something positive.

And so I’m taking a little break from the blog and social media, I always think that if you’ve nothing nice to say, it is usually better to shut up.

My family put up with a lot from me, my illness, my inability to work, my emotions. I feel right now, I have very little to offer and what I do have, needs to be focused on them.

I’m sure I’ll be back. But for right now, can I thank every one of you who has read this blog, followed me on social media, messaged me, spoke to me, met me.

I hope you all have the merriest of Christmases and I hope to see you in the new year.
Sam x

Funny things overheard in hospital

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During my last stay in hospital, I heard some brilliantly weird lines and jotted them down on my phone… I just found them and thought I would share.

You hear some great things on the ward…

“Did you know that they mummified Princess Diana? Mummified or embalmed. Are they different?”

“Elvis is alive! They just found him dead in America!”

“I think I just turned the TV off with my mind.”

“Some people drink piss you know! I couldn’t stand the smell, but I think it would taste ok”

“Sorry love, but you’re down wind from me and it’s going to get breezy”

“I think they’ve bled me dry, but if that handsome young doctor is doing the blood rounds, he can take some more! It’s been a while since I had a young man on his knees in front of me!”

“I don’t know whether this pie is sweet or savoury”

 

Being in hospital is tough, but you meet some of the most interesting people.  And many of those people are on medication.  It’s comedy gold!

Please share some of the funny stuff you have heard in your time on the wards!

 

Sam x

When XL is not big enough

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Are you a size 12? You are EXTRAAAAAA LAAARRRRRGGGGEEEEEEEE…

16? Give up all hope.  20? Get in the fucking sea.

I am clothes shopping for the party season at the minute and having to shop online as I don’t feel well enough to go out.  I hate internet clothes shopping as I know even in a shop, I can take 10 items into a changing room and not find anything that suits and so buying online when I can only look at a skinny model, lit beautifully in a studio and shot by a great photographer is far from ideal.

I am convinced nothing will fit me and so decided I had better check my sizing with this online store.  It turns out that their size XL is a 12.  A fucking 12!

blogger sam cleasby plus size

I’m XXL yo…

45% of UK women are a size 16 or over so why is it that so many shops are refusing to cater for the market?

I really don’t understand why some stores are just ignoring the needs of so many, even if you forget all about shitting on women’s self esteem, surely it is just good business sense to ensure you have products that almost half your market can use?

It does make me feel like crap when I realise that I am classed as abnormally large in the eyes of some.  I am a size 16 and cannot shop in some places as they just don’t have ranges in my size.  If you are larger than a 16, you are basically ignored!

Talking to the world of twitter, I can see it is not just me who is struggling with this.  Many companies are classing XL as either a 12 or a 14.  Lots of athletic wear simply do not go up to larger sizes meaning those who are gym bunnies or runners are really struggling to find appropriate training clothes.

I’m a big fan of Simply Be who do a range between sizes 12-32.  Their clothes aren’t your ‘typical’ plus size wear, in the past anything aimed at women a 16 and over have been old fashioned, frumpy or basically ugly tents.  Simply Be have an amazing range that is no different to any other great fashion store apart from that they actually fit!

It is simply shit business sense to alienate your market, so why do women’s fashion stores do it? Women are all different shapes and sizes so why leave out a big chunk of those women by not giving them the clothes they want to wear?

sam cleasby so bad ass parliament ibd blogger

You see it in store, there are always tons of size 6’s and 8’s left on the hangers whilst the bigger sizes fly out.  Does this not tell you something? They seem to stock far more of the smaller sizes when the statistics show that many women are larger, and get larger with age.  Where is the money? It is with older women in their 30’s and 40’s, who are more likely to be a size 12 or over.

This isn’t about fat vs thin.  We should cater for ALL women, whether they are a size 6 or a size 26 (and beyond!!!), this is about making a vast proportion of women feel shit about themselves because they can’t shop in the average store.

Let’s hope that shops start to realise this and begin to stock clothes for all.  And stop with the ridiculous sizing charts.  A size 12 should never be classed as Extra Large, ever.

And for the record, one size does not fit all.

 

Sam x

Dear Santa,

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Hey there big man, I thought I’d better jot down a quick note to say hi.  It’s that time of year again so I know your inundated but here’s what I’d like for Christmas.

My first wish was going to be for me to have no surgeries in 2016, but this damn illness of mine has scuppered that already and I’m going in January for a biggie!

They’re removing my Jpouch and creating a permanent ostomy. Some people might wish for Barbies at chrimbo, me? I’m getting a Barbie Butt.

barbie butt permanent ostomy

They’re going to remove everything and give me a new stoma, as well as sorting the other issues caused by all this illness.

It’s a long and complicated surgery, so Father Christmas, can I ask to come through it safely.  I’m scared you see and I just want to know that I’ll be ok and come home to my babies.

It would be nice if I had no other operations next year too, if you can manage it.

I’d also like to ask for an easier time in general. This year has been tough, I’ve been ill a lot and I hate the pressure it puts in my husband and kids.  They deserve a wife and mum who isn’t always ill, tired or in bed.

Whilst you’re at it, keep them healthy, happy and ridiculously weird.  They’re my favourite people in the world and I want to see them smile more.

family days out sheffield

Please let this surgery work. I just want to be well and not exhausted. I don’t think it’s too much to ask at 34 if you could stop me crapping myself.  I just want to be normal.  Not too normal!! I just don’t want to be sick any more.

Better treatments and a cure would be good too! Crohn’s and Colitis UK are doing well but a little festive, magical boost wouldn’t go amiss!

Help me to deal with all the new year is bringing me. I know I’ve had an ostomy before but this is all so permanent and to be honest, I’m scared I’m not going to deal with it very well. A sprinkling of bravery from you would help.

sam cleasby parenting blogger fathers self esteem

Santa, please bring me the courage to keep speaking out. Give me the ability to help others who are struggling and be a beacon of confidence, weirdness and hope for those following my footsteps with shitty chronic illness. Help me to carry on being The Poo Lady with pride.

I may not have been all good this year, but fingers crossed, I am still on the nice list!
Sam xx

Crohns and Colitis UK Dinner Dance

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Back in September, I was invited to a dinner dance arranged by Stephanie Donnelly, a woman who set up a support group for people who have or are about to have stoma surgery.  It was in aid of Crohns and Colitis UK and Breakaway and I was asked to be part of their fashion show at the Midland Hotel in Bradford.

crohns and colitis event charity blogger sam cleasby

It was a great event and they raised a lot of money for two great causes, it was an honour to be part of the day.  Sometimes, being an IBD blogger can be lonely, you sit alone writing for a huge audience but don’t actually get to spend time with others and so attending events like this is a great joy.

crohns and colitis event charity blogger sam cleasby

I have never done a catwalk (there doesnt seem to be much call for a size 16 woman covered in scars to model!!) before but it was tons of fun and fantastic to be part of a runway filled with inspiring women who have or have had an ostomy.  There was a Photo Booth and a swing band called the 309’s, all in all it was a fantastic night!

Thanks to Timm from The Picture Foundry  for being my wonderful date and for photographing me in these shots.

crohns and colitis event charity blogger sam cleasby

crohns and colitis event charity blogger sam cleasby

crohns and colitis event charity blogger sam cleasby

crohns and colitis event charity blogger sam cleasby

crohns and colitis event charity blogger sam cleasby

crohns and colitis event charity blogger sam cleasby

crohns and colitis event charity blogger sam cleasby

crohns and colitis event charity blogger sam cleasby

crohns and colitis event charity blogger sam cleasby

crohns and colitis event charity blogger sam cleasby

crohns and colitis event charity blogger sam cleasby

Sam x

 

Sheffield Live TV!

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I was invited onto Sheffield Live TV again to talk about this blog, Crohns and Colitis UK, Scope and the work I do.

I LOVE doing TV and radio, I used to get SO nervous but nowadays, I just really enjoy the experience.

Take a look!

Talking Sheffield 01.12.2015 part 2 from Sheffield Live on Vimeo.

 

Sam x

My daughter can shave her legs whenever she wants… 

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Last year, the issue of body hair arose in my family. My daughter had started secondary school and other girls were discussing hairy legs and armpits.

It really made me question my own choices and I decided to stop shaving my body, just to see how it felt.  I have always removed the hair on my legs, bikini line and underarms but couldn’t really give a reason why. I suppose it was the pressures of society and it seemed the ‘norm’. It was what women did.

In a world of smooth, hairless women, I wanted to show my daughter that some women choose not to remove their body hair. That it wasn’t neccesary and to provide her with a hirsute role model.

I was amazed that people actually had an opinion on my body hair. I’ve had friends and family members recoil, my hairy pits have become a joke (that I laugh along with!)

armpit hair feminism

I worked away over the summer in a job that required a load in/out of materials they were easiest to lift over the head and I couldn’t believe the amount of stares and whispers my underarms garnered.

I’m glad I experimented and questioned my reasoning behind this weekly chore as I learnt that I don’t care! Sometimes I want a smooth and hairless body, other times I love my hairy legs and pits!  The result was that I lost the embarrassment factor, I no longer stress about going out with hair on my body and this is the message I pass onto my daughter.

She asked recently if she could shave. When this question arose the first time, it threw me into a spin. I started thinking about societal pressure, peer pressure, feminism and body image. My response was to stop shaving myself and to just ask her to question why she wanted to.

This time I feel much more relaxed about it all. I tell her the most important lesson in life.

 
YOUR BODY, YOUR CHOICE!

I tell her that her wonderful body is perfect just as it is, but that if she wants to modify it, then that will be perfect too.

I ask her to question herself as to whether it’s what SHE wants, or whether it’s because others think she should do it.

We talk about attractiveness. She’s almost 13 and cares about her appearance, I don’t want her to think that it something to be ashamed of but want her to know that it comes from within and that confidence is the most attractive attribute.

We discuss why she thinks boys don’t want to see hairy legs and how that isn’t her problem.

We talk about choice.

Her choice. Not mine.

Because I want her to learn that her body belongs to her alone and that she should never be pressured into doing anything she isn’t comfortable with. This lesson is about more than body hair, it’s about her future sexual experiences, it’s about her knowing that if she says ‘no’ then it means no and she doesn’t have to explain or be ashamed of it.

lessons for my daughter

I don’t want her to do what I think is right, I want her to have her own mind and make decisions based on good information, support and great self esteem.

My hairy pits may suggest to you that I enforce this ideal on my kids. I don’t. I just want them to have the confidence to do whatever the fuck pleases them!

And that is why my girl can shave or not shave. Wax or be natural. Say yes. Or say no.

As it happens, she currently doesn’t bother but when she makes HER decision, I’ll be behind her 100%
Sam x

So Bad Ass on The Wright Stuff! 

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This morning I got a message from a Facebook follower letting me know that she’d just seen me on The Wright Stuff!

I popped on channel 5 +1 and hit record and saw that in a discussion about whether able bodied people should use accessible toilets, that my open letter was mentioned along with a photo of my big face! How exciting!! 

  

He does stumble of the name, saying IBS then Inflammatory Bowel Disease.  I think it’s a genuine slip of the tongue but always good to clarify that there is a difference between IBS and IBD. 

Others have commented that he says I sometimes use a colostomy bag, and feel annoyed that this is incorrect.  

I used to have an ostomy, I currently have a Jpouch but I’m going back to an ostomy, so it’s fair to say that I have times of using an ostomy bag.  I know it could be read as though it’s something you pop on and off but if you think about it, though some ostomies are permanent, others are temporary. 

It’s easy to get angry when you feel incorrect terms are used, but this is why it’s so great that we are having these discussions in the media! 

A few years ago, this was all SO TABOO! I think things are getting tons better and we are having more conversations.  Yes, the correct terms are really important, but let’s educate society on an illness that for so long was secretive! 

I tweeted Matthew and he responded telling me his friend has an ostomy and wishing me well with my surgery. 

Things are tough when you’re a poo blogger! There are some media outlets who simply don’t have any desire to talk about poo! When people are happy to have the discussion, let’s celebrate and use it as an opportunity to talk shit! 

Thank Matthew Wright for sharing my story and getting people talking.  If he’d ever like me on the show, I would be more than happy to be #thepoolady and talk shit on TV! 
Sam X

Wheelchairs are not a fashion accessory Kylie Jenner…

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Kylie Jenner, you dick, a wheelchair is not a fashion accessory or a way to show how quirky you are.  Shot by Steven Klein for Interview Magazine, the star of Keeping Up With The Kardashians is on the cover sitting in a wheelchair.

As if this is OK? Disability isn’t something to play at, it isn’t a prop or a way to show ‘another side of you’.  It is a reality that affects millions of people, not a joke or a fashion shoot.

Beth Grossman, Head of Policy at disability charity Scope, told The Independent: “If Interview Magazine wanted a glamorous, sexy wheelchair user on its front cover it’s a shame they couldn’t use someone disabled.”

“Having a non-disabled person in a wheelchair, as a provocative fashion prop, will offend many disabled people. It’s rare that we see aspirational and authentic reflections of disabled people in advertising and the media.

“If we’re going to challenge assumptions about disability, particularly about sex and disability, we need to share real-life depictions and experiences.”

There is a HUGE lack of people with disability in the media when you think that around 15 per cent of the world’s population, or estimated 1 billion people, live with disabilities. They are the world’s largest minority. (According to the UN).

15% of the population… So where are the 15% of TV presenters, models, politicians, movie stars with a disability? Yes, things are improving but it is still a problem that we don’t see a proper representation in our media and this needs to change.

What doesnt help is people with such celebrity status playing at having a disability.  It is offensive, it is wrong, it is not OK.  What bothers me is that this image will have gone through so many people’s hands before making it onto the cover and they either didn’t think it could offend, weren’t bothered, or hoped it would be controversial and increase sales. Interview has since told E! that their intention was to “create a powerful set of pictures” and “certainly not to offend anyone.”

I know this won’t offend everyone, there will be those who say it doesn’t upset them in the slightest and that it is “PC gorrrnnnn mad” but I know I am not alone in being pretty appalled that this happened.

kylie jenner wheelchair

kylie jenner wheelchair

Ablism is rife and I think it important to stand up against the use of disability as a prop for able bodied people to promote themselves as something different.

 

Sam x