Glastonbury toilets

I was at Glastonbury this year and for once, it was HOT!! The heat was tough but I drank plenty of (non alcoholic) fluids to stop the dreaded dehydration and having a few bag changes as the hot weather didn’t do my ostomy bag much good!

I unfortunately had a crap experience (!) with the toilets, and it was something I shared on my Facebook page, but realised I hadn’t talked about it over here.  I know that not all of you follow my social media and thought I would share it here.

“Tonight my bag suddenly filled fast, we walked away from the stone circle as we were waiting for the fireworks in search of a toilet FAST! You know those bag fills where it suddenly feels like it will pop off?!

We saw an accessible portaloo and a staff member said “this is for disabled people”. I said “yep I know thank you”

He asked if I was staying in ‘disabled camping’ and I said no. He said “you know these toilets aren’t for anyone other than disabled people right?” I said “yes I do, do you want me to tell you what my disability is?”

My husband said “you know that it’s not just wheelchair users don’t you?” My son pointed at the sign on the door that said “‘Not all disabilities are visible” 

glastonbury accessible toilets invisible disabilities

He said “lots of people might try and take advantage!” I said “do you want me to show you?!”

He eventually let me in and it was vile. Shit and piss everywhere, pitch black. I had to ask my husband to come in and hold a torch and I sorted my bag out.

We came out to him complaining to other staff members that people who weren’t in disabled camping shouldn’t be using the loos. I was mortified.

My husband went up and asked if there was a problem, he pointed out the sign and told them I had a disability and just because I wasn’t in a wheelchair didn’t mean I didn’t have extra needs. That we weren’t in disabled camping as he is staff so were in a staff campsite. They said they have to protect the loos from people who just want to use them.

Eventually another staff member said “do you have a colostomy bag?” I said yes ( then wasn’t the time to split hairs!) and he explained that I could speak to someone and get a wristband and also gave me the door code.

I’ve had to speak to a group of 6 people then another 2 to get use a toilet tonight. It’s embarrassing and humiliating. If I’d gone up in a chair and not had a wristband they would not have treated me like that.

And to have a guarded, locked toilet that was so disgusting is ridiculous. Having a larger cubicle does not an accessible toilet make!!! 

glastonbury accessible toilets invisible disabilities

A wheelchair user would have struggled massively to transfer themselves to that loo as it was filled to the brim with shit and the sides were covered in piss and shit. It was so dark in there that I couldn’t see a thing and needed someone to come and hold a torch!

I’ve done festivals for the past 20 years, I know what toilets are like, I’m no princess and totally get that they’re vile. But if you’re guarding and locking a loo and making such a fuss about protection of disabled people, perhaps make that toilet truly accessible. We can and should do MUCH better than this.”

 

I know that I really should have organised myself before, but I can’t help thinking that it really should only take some common sense.  I understand that people have a job to do, but going to an accessible toilet isn’t some kind of luxurious experience that people are going to lie about, surely?

There seems to be an obsession with the checking of disabled people and their toilet habits, so many questions to just go and have a shit and till you have stood with crap running down your legs waiting for another human to decide whether you should be allowed to go to the toilet, then it may be hard to understand just how humiliating, upsetting and degrading it is.

I will never stop shouting about this…

 

Sam xx

Are photo shoots naff when you have teenagers?

I LOVE photographs, I have thousands, both on my phone, on hard drives, in albums, on the walls and in boxes hidden away.  I adore looking through them and remembering brilliant times and revelling in just how small and precious the kids were.  Now they are teenagers.  And honestly, they don’t really want me to photograph them ever.  I have to steal their photos off instagram…

My husband is a photographer and though he takes beautiful images, he rarely has time to shoot us and I doubt the kids would stand for it anyway. Plus, if he is photographing us, then he isn’t in the shot!

And so, you can imagine their faces when I told them that I had booked a family photo shoot for us all.  “Muuuummmmmmmmm it’s so flipppinngggg weeirrdddddd!” “WHHHYYYYYYY??? You know what we look like!!!” and my favourite “Im not doing one of those all pile on photos where the dad lays on the bottom and then you stack up in height order…”

all pile on awkward family photo

Photo: Awkward Family Photos

And then the day came around and I drove four miserable faces out to Kelham Island in Sheffield to meet our photographer Corinne from Corinne Hills Photography.  She is a personal friend of ours, and I knew her relaxed and natural style would fit in so much better with our family than any white background shot or weird posing.

Corinne usually shoots in very natural settings, she is a forest schools teacher and so is usually found in the woods playing with sticks and making fires and so I knew I was pushing her slightly in wanting an urban setting for our shoot, but we agreed that it would be the same as her other work.  We’d go for a walk and she would quietly photograph us.

I was a bit worried that it might be weird or naff, that it really was something you only did with little kids.  But I couldn’t have been more wrong, it felt natural and easy and the images of my beautiful kids in their teen years (Thom is nearly there at 12, Ellie is 14 and Charlie is 16) made me cry. She captured the reality of our family, the silliness and the imperfections, she caught the moment I accidentally hit Ellie in the face and the repercussions of that! She caught my children’s personalities and their quirks and the photos make my heart swell.

If you would like Corinne to photograph your family, get in touch through www.corinnehillsphotography.com though you may have to wait a while as she is laid up with a broken ankle and is very pregnant! But I guarantee you, it will be worth the wait!

Enjoy!

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

family photo shoot with teenagers in Sheffield urban kelham island

Love Sam xx

 

Talking to Scouts about poo

One of my favourite parts of everything to do with So Bad Ass is that I get to do talks all over the world about IBD, ostomies, disability, parenting and body positivity and so when I was asked by our local Scouts group if I would come in and talk to their Cubs about disability, working for a charity and my experiences to help them get their disability awareness activity badge, I jumped at the chance.

Then it got to the night itself and despite the fact that I have spoken in front of rooms full of the most respected doctors in the world, in front of hundreds of people at events all over the place, the thought of a bunch of 10 year olds was terrifying!!

But I knew I wanted to go ahead and so I went in and spoke about my illness, about my ostomy bag, scars, disability and lots about poo… There were some “urghhhhhh” comments, there were times when they asked weird questions, but it was all good and so great to talk about something that is very much seen as taboo.

I spoke about my work for Scope and their End The Awkward campaign, about how lots of people find it difficult to speak to a disabled person because they feel awkward and worried that they will say the wrong thing.

We spoke about examples of disability, and they blew me away by saying that one of their grandparents had an invisible disability in the form of dementia and I was so pleased that they had such a great level of understanding.  We chatted about how difficult communication can be for some people and how we can find ways to make it easier.

One child raised his hand and told me he had scars like me, that he’d had heart surgery when he was a baby but his dad told him he could tell fibs about the scar, that he won a fight with a ninja, that he survived a shark attack, that it was a Harry Potter scar… I love that! I often tell people I fought off cthulhu…

In short, they were fantastic and I think they all went away with a better understanding of disability and so it was all worthwhile.  I even got my own badge!  I was one of several people to come and talk to them over a few weeks, they had learnt some sign language, had a session with a man with a sight impairment and had talked about mental health too.

scouts disability badge
I did find out that 10 year olds are awful/brilliant. I said they could ask anything and I’d try my best to answer. One boy raises his hand, waving, desperate to ask his question. I thought ‘how brilliant! I’ve really reached him!’

He said “why is your hair half orange and half black?” 

Great.  Burned by a 10 year old cub scout…

Please offer me a seat…

Last summer I was contacted by Transport for London and a TV company about doing some secret filming and trialling their ‘Please offer me a seat’ badges. 

The ‘Please offer me a seat’ badge and card for people who find it difficult to stand when using public transport. The badge and accompanying card were created following requests from customers who struggle to get a seat, as their need is not immediately obvious. The badge and card remove the awkwardness of customers having to explain their need for a seat to others.

I wasn’t that confident that these badges would work, after all London tubes are not the friendliest places on earth and most people don’t even make eye contact let alone look to see if you are wearing a badge!

I have a chronic illness called Ulcerative Colitis, I have a permanent ostomy bag and symptoms of my impairment are extreme fatigue, joint problems as well as the odd bag leak.  From the outside, it is very difficult for anyone to see that I have an impairment yet there are times when I struggle to walk, stand and the anxiety of these things can make it really tough to even leave the house!

And so I boarded the tube with a team hiding at the other end of the carriage filming me and the people around me.  I stood on the busy carriage with my badge attached to my jacket and waited.  I didn’t have to wait long, within a minute a man waved to me and offered me his seat that I gratefully accepted, after a minute or two I spoke to him and the camera crew came in, I asked why he had offered me his seat. He said he noticed the badge and thought at first it was the pregnancy badge, then he saw it simply asked for a seat and he assumed that I must have some need to sit. We thanked him and moved on.

For the next two hours we got on tube after tube after tube and every single time, I was offered a seat almost immediately.  I was genuinely gobsmacked!

One man who was standing but saw my badge nudged a seated person and pointed at my badge and they jumped up offering me their seat apologising they hadn’t spotted the badge before.  They all said that the badge was a good thing and would make them realise that the person wearing it probably had some sort of illness or impairment and needed extra support.

There was not one journey in that time that I wasn’t offered a seat.  Men, women, children, older people, all saw the badge and offered to let me sit in their place.  I was expecting that a few people would take notice but I was amazed that it had a 100% success rate for my trial.

Last autumn, TfL held a six week trial with 1,200 people to test the new badge and card. More than 72 per cent of journeys were found to be easier as a result of the badge, and 98 per cent of people taking part said they would recommend it to somebody who needed it.

As a result, they are now introducing the ‘Please offer me a seat’ initiative permanently. The free badge and card are now available through their website or by calling them on 0343 222 1234.

There are no qualifying criteria – applicants do not need to provide a GP’s note or their medical history. The badge and card can be used across the network, on London Underground, London Overground, Buses, Docklands Light Railway, TfL Rail, Trams and River Services.

I think the badges are a marvellous idea, I would generally be too embarrassed, too uptight and well, too British to actually ask someone to give up their seat for me! I would assume they would question me and I would have to answer personal questions to a stranger if I asked and so these badges give an easy to understand request that isn’t pushy and in my opinion, help to end that awkward feeling of needing help but not wanting to ask.  The fact that I had such a positive experience really made me feel more positive about society and more confident in travelling around London on public transport.

 

It’s National Sister Day

Today is National Sister Day and so I thought I would do a little post about my big sister Lisa.  She lives in Sydney, Australia and I miss her every single day!

We are ten years apart in age and when I was younger, I always looked up to her so much.  I don’t remember her ever being anything other that a grown up and so that shaped our relationship as she was my big sister and I was the baby.

sam cleasby family photos national sister day

 

When I was a little girl, it was Lisa’s bed I would crawl into if I had a bad dream, Lisa’s hand I wanted to hold, Lisa’s life I wanted to mimic.  I think it carried on like this for a long time, with our relationship being unequal in some ways as it was her I turned to for help and advice rather than it ever being the other way around.

And then when she got pregnant with her daughter just after I found out I was pregnant with my third child, it really shifted the balance.  All of a sudden, I had experience that she didn’t, she needed to ask me advice and it changed us beyond big sister/little sister to really good friends.  She was with me when I gave birth to Thom and when her daughter Gracie came along, I was a proud aunty to a wonderful little girl.

Sam Cleasby family photos

Lisa decided to move to Australia almost five years ago, she had a job opportunity and had always lusted after a life down under since her travels ten years before.  When she told me, I was both devastated but equally excited and pleased for them.  We lived in the same village and our kids went to the same school and so we saw each other several times a week.  I remember weeping loudly whilst trying to smile and tell her that I was happy for them.

Since then, I have visited them over in Australia.  It was just three months after my first operation and it was the thing that kept me going through recovery.  They have been back for a couple of visits too, but I haven’t seen her in person for nearly 18 months and it is hard, I miss her every day.  I wish I could just walk down to her house for a cup of tea or a glass of wine, I wish I could call her at any time, rather than having to check what time it is in Sydney.

woman with an ostomy bag swimming ileostomy colostomy

She is my inspiration and the person whose opinion of me matters the most, I want her opinion and her approval as she is so important to me, she is smart and funny and caring and kind and I know that when she gives me advice, it is always in my best interest.  Of all the people in the world, I care the most about what Lisa thinks, I want to make her proud.

Since she moved away, my health deteriorated massively and the surgeries began, and so she hasn’t been here when I have been at my most ill.  I know this was really tough for her and she felt sad that she couldn’t be by my side.  But we found positives in the situation, she always says that she is my night shift, that I have lots of people to talk to in the daytime, but when I can’t sleep and am struggling in the night, it is her daytime and so she can be there for me when no one else is.

sam cleasby family photos national sister day

 

You have to look for these positives when faced with a tough situation.  We talk on messenger often and FaceTime each other whenever we can, the internet and social media mean that we don’t miss out on the important parts of echothers lives.  I can see her photos of a night out in real time, I can watch videos of my niece and shots of their days at the beach on my phone as they shoot them!  We have come up with our own codewords and made up silliness through years of messaging each other, when words have autocorrected to become something daft, they often stick.  One thing we have is a word for when we say hello. It is never both of our mornings or night time at the same time and so we greet each other with the word ‘nighting’ as it works for us both.

sam cleasby family photos national sister day

Any way, I just wanted to share a bit about my brilliant big sister today when I saw that it was National Sister Day as I love her very, very much and I hope she knows just how important she is to me.

 

Thank you Lisa, I love you!

 

Nighting

Sam xxx

That time I met Dynamo and made him sign my ostomy bag…

This year, Timm, the kids and I headed off for a week at Glastonbury festival and had a whale of a time! We hadn’t been with the kids in 10 years and so it was lovely to revisit such an awesome place with our now teenagers, it was a lot less stressful than taking three under 7s!

We saw a lot of bands and had a very chilled out few days in the sun (yes! No rain!!), one afternoon we headed up to the Kids Field where the children still weren’t too old for a lot of silliness and painting and a lot of time sat in a big tent listening to them trying a ton of different instruments.  Then our youngest pointed over to a little tent that had been hosting a variety of children’s entertainers for the day, “Look!” he shouted “Dynamo is playing there!”

We looked at the small space that currently had a man making balloon animals and told him that it wouldn’t be the REAL Dynamo!! He insisted we went in and as we squeezed cross legged into the tiny tent we waited for a low budget version on Dynamo to grace the stage and low and behold, out steps the one and only real life Dynamo! Thom’s smug face screamed ‘I told you so!’

dynamo glastonbury kids field

So we watched a world class magician play to maybe 100 kids in this little corner of Glastonbury and were blown away.  Apparently he plays it every year and only kids are allowed at the front, he doesn’t do it for money but to instil a bit of magic into the lives of children.  How beautiful is that??

So afterwards, Thom points over and says, we can go meet him now! So we joined a little queue and waited, and out came Dynamo!  The kids met him and gave him a hug and got things signed and then pushed me forward – ‘tell him about your blog mum!!’ they shouted.

dynamo crohns disease ostomy bag

 

Dynamo has Crohns Disease and the way he has spoken about it has inspired so many people to not be quite so embarrassed of the condition and so I told him about the blog and just how wonderful he was for speaking out and then (and I know this is super weird!) I asked him to sign one of my ostomy bags!

 

And he did!

dynamo crohns disease ostomy bag

I never thought I would meet Dynamo, and I certainly didn’t expect him to sign my ostomy bag!!!

Sam xx

 

So I have something to tell you…

I have been quite open on here about the ups and downs of this journey of mine, through meds, hospital stays, 5 surgeries, months of recovery and the multitude of things going wrong, I have documented the lot.  There are times when I feel positive and upbeat and other times when I feel thoroughly defeated.

You may have noticed that I didn’t blog for a good few months this year (from April to July) which is the longest time I have abandoned this place for.  The reason for that time away is that I am really struggling mentally.  And after months of hiding my feelings and plastering a smile on my face, I decided to start seeing a counsellor a few weeks ago.

I haven’t told many people this, I suppose I just wanted to keep it for me for a while, to try it out and see how I felt about it.  I suppose there is a small part of me that is a little embarrassed, I am not from a place or family that talks about needing support or showing any vulnerability or weakness.  I know this is bullshit, but I am fast discovering just how much crap my upbringing and environment has subconsciously taught me.

I don’t want to go into it too much, it is very much a private thing between me and her.  But I do want to say that just a month in, and I am feeling the benefit of it week on week.  Don’t get me wrong, it is HARD.  We are talking about things that hurt. A lot.  We are talking about things that bring a lump to my throat to just think about, let alone say them in front of another human.  But it is helping me to start to learn about myself, to pull things apart and think about them in a new way.

It is helping me to not only understand myself, but to start to think about the people in my life and how they are feeling and how their actions have affected me.

sam cleasby blogger mental health counsellor sheffield

It’s weird, I am quite controlled, yet when I am there, things come out of my mouth that I didn’t even know I wanted to say, that I hadn’t even thought about.  And her responses sometimes floor me.

I struggled with the very idea of counselling because I struggle with people who make excuses for their own behaviour (she has made me realise that growing up with alcoholics and drug addicts will do that to a person!). And so there is a big part of me that feels like I shouldn’t be there complaining, that I should just figure my shit out and deal with it myself.

But another part of me has realised that figuring my shit out requires the input of a very clever and compassionate therapist at this point in my life. And that’s OK.

I thought about whether to share this with you or not, and I came to the conclusion that if I do this, I do it honestly. I don’t want someone reading this blog and only seeing the Mary Poppins, sweetness and light, positive rainbow side of me and thinking ‘oh. why do I feel so shit and she is ok?’ I want to share the highs, and the lows.

I want to tell you all, and myself, that even when things are awful, even when you want to hide in bed or run away, when you feel like you are a burden to those around you, when you wonder what the point in carrying on is, when the world feels like a dark an scary place; you aren’t alone, I am here and I understand.

Love Sam xx

 

Body Positivity with an Ostomy talk

My talk for the Steel Belles WI in Sheffield about body positivity, ostomies, feminism, body hair and being fat.

 

Probably NSFW due to my sweary Northern gob…

 

 

You can buy the t-shirt I am wearing here and £2.50 from every sale goes to Purple Wings Charity.

Convex Ostomy Bags – for the wonky, uneven, hernia’d or unique ostomy

Do you have an inny or and outie? That’s a normal belly button type question as we know that people are all different (I’m an inny just so you know, but with the amount of surgeries I have had, it is not the one that Mother Nature blessed me with!)

It’s odd as we totally get how unique and different we all are in every other part of our bodies, yet when we get a stoma, we assume that they should all look exactly the same and behave in the same way, when of course, they are all as unique to us as our bellybuttons are.

 

sam cleasby blogger ostomy ibd woman with a colostomy ileostomy bag

When I got my first parastomal hernia, I began to leak all the time.  My usual bags were just not fitting correctly, and I assumed that I must be doing something wrong.  It was only once I called my stoma nurse and not so bravely wailed down the phone to her, that I even heard of a convex bag.

Usual bags have a flat and soft flange that sticks itself around your stoma and to your stomach, a convex bag has a dome shape to the flange which pushes in around your stoma to make a better seal.  I originally turned to convex after my hernia, but there are a few other reasons you might want to try a convex bag.

After one of my surgeries, I ended up with a recessed stoma, it was kind of sunk in on one side and luckily I knew about the convex bags, so went straight to them.  If you have creases, dips or moats, or find yourself using a ton of paste or rings, you might really benefit from trying a convex bag.

I hear from far too many people saying they live with daily leaks or uncomfortable ostomy bags and it really saddens me.  We aren’t given that much information about the amount of choice we have in our bags, to be honest, I didn’t even know there was more than one brand when I first got mine as I just had what the hospital gave me.

We are super lucky to live in an online world where you can find out so much information, if you have an ostomy, even if you are happy with your current bag, then please go and do some research.  Take a look at ostomy brand websites and check out their full ranges, call them, email them, get samples and try them out.

convex ostomy bag

I tried the Aura Convex bags recently for exactly this reason, I want to keep up with all the latest technology and the newest bags that come out, so I am always sure of what is best for me.  I loved the super soft feel of these bags and the flange felt well stuck on helping with confidence.  Though it is convex, it sat really flat against my tummy meaning it was invisible even under a tight dress, the fit was nice and I had no leaks or issues whilst using them.

So inny or outie, flat, hernia’d, wonky or creased, just remember that you always have a choice with your bags, if you want to try something new, that is your right, speak to your stoma nurse or head direct to ostomy sites and trial your own.

Let me know your experiences of convex bags!

 

Sam xx

 

 

 

This post was sponsored by Clinimed, I occasionally work with companies, but I will only ever give honest reviews and every business I work with are personally trusted by me.  My audience is brilliant and so I only want the best for you guys!

 

My perfect family… Glastonbury 2017

“You have such a perfect family!”

I got told this after sharing photos of our trip to Glastonbury this year and so I thought I would share a few pics of my perfect family.  We never argue, the kids are always on perfect behaviour, our home is a sanctuary of calm, peace and love.  There is never a raised voice, never a curse word muttered.  We all just live in harmony.

glastonbury perfect family parent blogger sam cleasby sheffield

glastonbury perfect family parent blogger sam cleasby sheffield

glastonbury perfect family parent blogger sam cleasby sheffield

glastonbury perfect family parent blogger sam cleasby sheffield

glastonbury perfect family parent blogger sam cleasby sheffield

glastonbury perfect family parent blogger sam cleasby sheffield

I mean, of course, that is all bullshit.  When I got told how perfect my family are based on these images, it made me think about how we come across on social media.

Yes, we had a wonderful time but I didn’t take photos of the guilt I felt when I had to nap every day. I didn’t take photos of the ostomy bag leak and me crying my eyes out. I didn’t take photos of the arguments the kids had or the time my eldest lost my youngest in a festival or the anxiety attack I had at 4am. I didn’t take photos of the difficulties of raising teenagers and the conflicts they are going through. 

I didn’t take photos of three kids in a car, arguing over who is manspreading leading on to a battle over why the term man spreading is or isn’t sexist and a discussion about who had the biggest balls.  Nor did I photograph the sheer anxiety of letting your 16 year old into a mosh pit alone, or the look on the youngest’s face when he found out the big two didn’t want to take him to see a band.

I didn’t take photos of my worries that my hernia was returning or the feelings of sadness and fear I had despite having this lovely family time. Or the struggles in keeping a relationship going through years of chronic illness.

I love my family, they are wonderful and I am so lucky to have them. But photos on social media only show the best of times so when you have those feelings of worry when you see everyone else having a seemingly perfect life, remember that we are all fighting our own battles and comparison to others is unhealthy and really doesn’t help!

Are my family perfect? Hell no!!!! But we get through each day and share the happy photos to celebrate the times it goes well.

  Sam