Medical ID app

I found out about this app on the iPhone recently and thought it would be of interest to you all. 

It’s called Medical ID and allows access to some vital information on your phone in an emergency situation. It’s free, simple and easy to set up and so I thought I’d talk you through the set up process. 

Go to the Health app on your iPhone.   

medical id app apps to help with disability Go to Medical ID in the bottom right hand corner.   

medical id app apps to help with disability 
Click on that and fill in your information starting with name and date of birth and medical conditions as well as medical notes.  As I have a jpouch, I added in a note explaining that rectal exams must be taken with extreme care. 

 medical id app 
You can then add your emergency contacts (you can add more than one), blood type and if you are a donor. 

 medical id app

Then save the information and it can be found if necessary on your locked screen by pressing emergency and then Medical ID. 

  medical id app  

 medical id app apps to help with disability 
 
It takes a couple of minutes but allows you a little piece of mind that in an emergency, your medical needs are right there for the people who may need them. 

Hope this helps! 
Sam x 

  

Bad days. And good!

I’m not having a great day today, I’ve had a stinking cold for a couple of weeks and I think my immune system has taken a battering and so I have been up a lot in the nights going to the loo. 

I woke this morning and my joints are absolutely agony.  My body is feeling broken and very, very old. I have been ignoring and trooping through for a while but today it is time to listen to my body and stop.  Today is about laying on the sofa and watching terrible day time TV.  My body is speaking and I am listening. 

I am pretty stressed at the minute and I don’t think that has helped.  Our car broke a month ago and we’ve been trying to get it sorted, it turns out it’s not worth spending the money on and so we have to buy a new one.  It’s money we could really do without spending/losing now.  Our rental house is going on the market at the start of next year and so we are house hunting.  Our work load has been HUGE over the summer and we are playing catch up.  And family stress of close relatives taking umbrage with something I have done (I have no idea what!) means I’m being deleted and blocked on Facebook and talked about behind my back. Part of me wishes they would just speak to me and tell me what’s wrong. The other part thinks I just don’t need the stress. 

I thought I would share this on here as it is how I have always dealt with my illness for the past two years. But then I thought about how I have been a little quiet of late on here about my health. And the reason for that is because it has all been loads better!  With a balance of meds, probiotics, diet and exercise things have been great and I haven’t had much to report. 

It made me think about how sometimes ostomies and jpouches have a bad reputation because we only talk about them when experiencing problems.  It made me want to try harder to write about all the positive things that have happened to my body since getting surgery, about how much better life is. 

And so I will try to remember to write about the good days as much as the bad days. 

Just not today as my hands and wrists have had enough. 
Sam x 

When you can’t hold it…

I have seen two stories today about different situations where institutions have put rules in place regarding toilet breaks and it really got me thinking about how distressing this can be for those who can’t just hold it.

The first was regarding comedian Frankie Boyle and how his shows have put restrictions on people leaving the auditorium during his 70 minute show.  Security staff at the King’s Theatre in Glasgow were ordered to escort fans to another part of the building until the performance was over if they left to use the bathroom.  According to the Mirror, the general manager James Howarth said “The show is only 70 minutes long so it’s not an unreasonable request.”

The second story was about St Teilo’s Church in Wales High School in Cardiff that sent out text messages telling parents their children must have a doctor’s note if they want to go to the toilet regularly during lessons.  It said: ‘If your child needs to be allowed out of lessons to go to the toilet then please provide a medical note in the next week so they can be issued with a pass.’

public toilet sign

 

Now I understand that disruption of shows or classes can be annoying to others, but as a person who regularly has to use the toilet and can’t always hold it, believe me, it is more annoying to me than anyone else! I have two different view points on the two stories though.

Regarding the show, it is just so disheartening to know that these rules are in place, though it isn’t great to disturb a show, it is sometimes a necessity.  There is nothing that sets more fear into my heart than the idea of being unable to get to a loo in time.  Take off and landing during flights make me sweat because as soon as I hear the words that the toilets are out of bounds, my stomach churns, my guts cramp and my body panics!

Rules like this exclude people with bowel or bladder conditions from these social occasions.  They increase anxiety and add to isolation.  If you struggle with toilet issues and need to go regularly, then it can be very difficult to mentally deal with being out in public and if you cannot access toilets with ease then it can rule out certain events altogether.  The quote from the manager REALLY pissed me off. It IS an unreasonable request to expect some people to not be able to use the loos for over an hour.  Every theatre/comedy/music show I have been to also tend to have huge queues so leaving it as long as possible just isn’t an option when you know you could end up in a 20 minute queue afterwards.

Invisible disability is everywhere and there are many people with needs and issues that can’t be seen easily and these people shouldn’t have to explain to a theatre attendant their complex medical needs.  Places need to be more inclusive not be excluding people based on disability.

The school story initially upset me a lot more.  The idea of kids having toilet access restricted was quite disturbing as children with bowel or bladder issues have a hard enough time as it is let alone having to produce a doctor’s note.  But in reading the story I think it was just a badly worded text with a genuinely caring message at heart.

The school appears to be putting into place a system where those who have genuine medical issues can have the ability to go to the toilet unchallenged as the school will know which kids have a need to go.  It must be very difficult for teachers to know who is really needing to go and who is doing it to waste time/mess about.  I remember when I was at school that a toilet break was often used to go for a wander/grab a drink/raid the chocolate machine/chat to my boyfriend… (Don’t tell on me!!!)

I suppose the problem with this is that some kids may develop symptoms of illness and need to suddenly go often and without a doctors note they may not be believed.  Children, especially teens tend to hide symptoms of what they deem as embarrassing illnesses.  They may have not even told their parents, let alone been to the doctors yet!

ibd blogger office loo toilet ulcerative colitis

 

The other problem is that sometimes it takes a long time for doctors to correctly diagnose these illnesses, I speak to so many people with IBD who were initially fobbed off with a diagnoses’ of everything from piles to anxiety.  Perhaps we just need to trust that some students will sometimes need to go to the toilet more often than others in order to not isolate, embarrass and upset those who have a genuine need.

If you have ever soiled yourself in public you will know that this isn’t a joke.  It is mortifying and can make you feel that you should stay home forever, it can make you feel embarrassed, humiliated and inhuman.  It can make you feel life isn’t worth living.

Are these things worth it to stop some minor disruption to classes and social events?

I think not.

 

Sam

My 2 year nocoloniversary!

I honestly can’t believe it’s been two years since that fateful day where surgeons removed my colon.  I have come so far and I am really proud of myself.  If you would have told me two years ago that I would be sat today, writing for a living, traveling the country talking to people about disability and confidence, that I would be WRITING A BOOK, I would have laughed you out of the door. (Actually I was in HDU two years ago today and so I wouldn’t have done much at all!)

I felt like my life was over.  I was so weak and broken in both body and spirit, I couldn’t imagine how life would be worth living any more.  Little did I know that losing my colon was the making of me, it showed me I had a strength that I never knew I possessed.  It taught me what was important in my life and it gave me the drive to push forward and make a difference.

In two weeks I will be at an awards ceremony for the National Diversity Awards, I will sit in my evening gown beside my husband Timm and see if I have won the award that I have been shortlisted for, whether or not I win the accolade of Positive Role Model for Disability or not, I will feel like a winner.  I will know that I used the worst time of my life to make things better for other people, I will know I made a difference.

I could rattle on for hours about the past two years but I thought I would do it in photographs.

Enjoy…

sam cleasby ulcerative colitis ibd ileostomy surgery

 

dr who tattoo canula

 

ulcerative colitis bloods

stoma placement

ulcerative colitis surgery sub total colectomy with end ileostomy

ulcerative colitis surgery

 

colectomy scar ulcerative colitis

scroobius pip scars

 

matt helders drumskins stoma

stoma ileostomy photo shoot woman beauty

stoma ileostomy femininity #stomaselfie woman with stoma ileostomy ostomy stoma images

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

 

vietnam bicycle ulcerative colitis ibd warrior ileostomy ostomy stoma adventure life travel

woman ostomy boobs colostomy ileostomy bikini

 

ostomy and holidays

bbc radio sheffield

 

don't give a fuck beers and ostomy and bikinis

sam cleasby disability blogger sheffield

ileostomy j pouch wounds scars ibd surgery

ostomy photoshoot sexy ileostomy 50s pin up photo shoot so bad ass sam cleasby

how to wear a bikini body confidence so bad ass

chronically ill chronically awesome chronic illness lol

ibd ostomy ileostomy colostomy

sam and timm cleasby wedding

ibd blogger office loo toilet ulcerative colitis

woman showing ileostomy colostomy bag

 

sam cleasby public speaker

crohns and colitis awareness week

 

ibd blog crohns and colitis uk

 

too ugly for love disability ostomy

 

pelican healthcare live your life roadshow pelican healthcare live your life roadshow

 

my beautiful scars

lady who tutted at me for using disabled toilet

 

so bad ass sam cleasby sheffield blogger

sam cleasby blogger writer sheffield

inspire through your own story more than meets the eye invisible disability

 

sam cleasby bbc tv sheffield blogger

sam cleasby tut disabled toilets more than meets the eye

#stomaselfie sam cleasby stoma ostomy photo shoots sam cleasby

sam cleasby surgery recovery

paralysed ileum

world ibd day sam cleasby so bad ass blogger

seven hills wi talks sam cleasby self esteem public speaker so bad ass

sam cleasby pelican healthcare

 

sam cleasby public speaker

 

crohns and colitis uk sam cleasby sheffield

sam cleasby metro stoma ostomy

gastrointestinal nursing sam cleasby

 

national diversity awards sam cleasby

 

sam cleasby writer blogger sheffield

 

sam cleasby writer blogger sheffield peters fraser and dunlop author

 

sam cleasby writer blogger sheffield

 

 

 

Thank you every single person who has read this blog, been to see my talks, messaged me or followed me on social media.

Thank you to every person who has shared a post and helped others.

 

 

Love Sam x

 

 

That time I was the same size as Alexa Chung. Or maybe not.

You know the whole One Size Fits All thing? Well, it turns out that a size 16 mother of 3 is not the same size and shape as model and all round tiny, gorgeous woman Alexa Chung

How do I know this? Well apart from physics, common sense and having a pair of working eyes, I once ended up in a spa with the lovely Chung in New York and what followed was so awful that I can only now laugh about it, years later.

I had gone to New York to see my husband who was working at the time for Arctic Monkeys and Alexa was dating the singer.  We had met and hung out a few times and being the thoroughly lovely and welcoming person she is, she invited me on a girly day out with one of her friends.

After a fab morning shopping at Bloomingdales, we met for brunch and I felt like I was in a film, though to be fair, I always feel like I’m on a movie set when I am in America.  I am just a normal girl from Sheffield, there was no coolness from me, I was like a giddy kipper.  Anyway the plan was to go get our nails done, but when we arrived it was mentioned about going to the day spa.  Neither Alexa or I had any swimwear but the receptionist assured us they could supply bikinis, I wasn’t super hyped about this but thought I would go along with it as I DO love a spa.

So we pay and then this smug faced receptionist hands us two small bags, the size of the bag immediately worries me as inside were our swimmers.

“Whose is whose?” I asked.  “Oh they are one size fits all!” she chirpily replies.

alexa chung

I looked to my left at the tall, model-like stature of my pal and then down at my chunky arse and wider than average tummy and then back to the receptionist, “You are fucking kidding, right?”

“No” she replies as she shoos us down towards the changing room, “believe me, they’ll fit!”

Before I could even think I am in a changing room looking down at the smallest pair of paper pants and bikini top imaginable.  I am considering just doing a runner when I see Alexa’s face is as aghast as mine.  “It’ll be fine!” she says with a fake cheer.

We undress.  In an open changing room, because seriously, who needs privacy here?! I put on the pants and am relieved they go over my hips but realise that I must walk with my knees together so they don’t rip up the sides and I don’t get arrested for public indecency.  The paper bikini top covers my nipples.  That’s it.  Just nips.  I want to fall into a deep hole and die.

Chung puts on her bikini and we stand side by side looking in the mirror.  Her pants are pulled up to her chest and the bra is hanging off.  For a moment, there is a stunned silence.  Then we burst out laughing.  We look fucking ridiculous and there is no way around it but to hysterically laugh.

ileostomy bag bikini swimwear beachwear holiday

Inside I am dying a little, I am stood next to a gorgeous model, fit to burst in a paper bikini with my stretch marks, big boobs and cellulite hanging out.  Then she says to me “my tits look ridiculous in this, yours look amazing”.  And I realise that we judge ourselves, we are always so harsh on our own looks that we don’t actually bother thinking about other people.  I was scared she would laugh at me when actually, like most women, she was simply concentrating on her own image.

We ended up using both of our paper bras to fashion one mega bikini top to hold my puppies in place whilst she went in her own bra.  (Why on earth we both didn’t just wear our own knickers and bras I have no idea!)

As we hung out in the spa in what turned out to be a lovely day, we talked about our sizes and how difficult it was to be in the public eye.  She has been slated time and time again for her size, and it made me think about how hung up we are on a woman’s size and shape.  You can’t win, you are either too fat or too thin, too wobbly or too muscly.  Judging women based entirely on their shape is a tool to shut us up, it is a way to objectify us and discredit our worth.

I am far more than the size of my arse, the number in the back of my dress bears no relevance to my character.  Body shaming is everywhere these days and even as I go around the UK talking to women about self esteem and body confidence, the response I get back is often negative towards thinner women.  The term ‘real women’ pisses me right off, as if those under a size 10 are some robotic alien dolls sent back from the future to make all other women feel shit about themselves.

And ladies, we have to take responsibility for this because we are our own worst enemy.  Don’t judge and shame the woman next to you, don’t assume anything about her because of the shape of her body or size of her ass.  Don’t be so free and easy with the ‘skinny bitch’ comments.  (Most) people wouldn’t dream of telling me to get a salad, yet more will happily tell a slimmer woman to eat a pie!

Let’s just start on loving ourselves.  Even when you are in a paper bikini stood next to a model.

 

Sam x

 

 

Sam x