Posts

Rosie Batty: Silencing those who speak out

In February 2014, 11-year-old son Luke Batty was murdered by his father, Greg Anderson at cricket practice in Melbourne, Australia.  It made worldwide news and society was shocked and appalled at the violent attack from a father towards a son.

His mum Rosie Batty became an advocate for female domestic violence victims and campaigner for making changes to government processes relating to the protection of women and children and she established the Luke Batty Foundation and Never Alone to assist women and children impacted by domestic violence.  Her courage, strength and bad ass spirit helped her to become the 2015 Australian of the Year.

She speaks out at events and to the media about the horrific experience of losing her son and is a domestic violence campaigner.  She uses her life to bring the conversation of domestic violence into the limelight and I think her selfless efforts are inspirational.  She is using her pain from an experience that many couldn’t even imagine to make a positive difference to others.  What a hero!

So why is Mark Latham, a former Prime Ministerial candidate trying to shame her into silence?

In his column for the Australian Financial Review, Mark Latham said of Rosie’s public speaking events;

“How did Batty immerse herself in such company, wheeled out at business functions to retell the story of her son’s murder in February 2014? There was a time, in the dignity of working class life, when grieving was conducted in private”.

How dare he!

What Rosie has done isn’t about a lack of dignity or respect to her son, the fact that this man feels he can silence a woman says more about him than her.  Her decision to speak out and make a difference is saving lives.

With her words other woman may find the strength to ask for help, mothers may leave abusive partners for her children as well as herself, she is teaching society about the warning signs and is publicly telling the government that more support is needed.

But when Mark Latham comments saying that this is a ‘private issue’ and ‘undignified’ he is creating a conspiracy of shame and silence and putting lives at risk.

This story struck a chord with me as I write about illnesses and treatment that can be embarrassing and ‘impolite’ to discuss in public, I spend most of my life either writing or speaking about poo and have faced others who believe it is undignified and should be kept private.  I never thought as a child that I would have a career in talking about poo, but this is where I am.

The experiences of Rosie Batty are incomparable, I am not putting losing a child in the same league as having an illness or surgeries, but the act of speaking out about something that others believe should stay private is similar.  I write, I speak out, I do all this to make a difference and help others.  I use my pain and suffering to reach out to those who are suffering and to break the taboo of embarrassing illnesses in the same way that Rosie uses her pain to help victims of domestic violence.

And so to see a fellow ‘sharer’ be shamed and silenced by a politician is just abhorrent.

When you go through a terrible experience, whether it be loss, illness or a life event that just knocks you for six, the shock and pain can make you feel so isolated.  It can feel like your life is crumbling and everything has changed forever.  How each person deals with that pain is personal and unique.  Some will keep it private and deal with it quietly and on their own, others may access the support of a wider circle and some may choose to use the experience to make a difference.

sam cleasby ibd blogger

There is no right way and people like Mark Latham don’t have the right to judge, shame and silence.

That judgement isn’t just affecting one person, the ripples spread so much further and you can hurt so many more.  Encouraging a culture of silence affects vulnerable people who need support and cements the shame and embarrassment into a person’s mind. I strongly and passionately believe that we should not fear speaking out about issues that are uncomfortable.

It takes courage to write or speak about things that are not socially acceptable or polite to discuss in public.  No matter how confident I may seem, every time I hit ‘post’, I fear the response I may get.  I worry that it will change the way people see me, I worry people will laugh at me or judge me.  But I keep doing it because I know I am helping, I know I am making a difference.

Rosie Batty is a true hero.  She is doing something amazing and helping so many when I am sure there are times when it is the last thing she wants.  I am sure she would give it all up in a second to have her boy back.  I am sure she is privately grieving and dealing with this in a personal way.  Her public persona and work doesn’t hinder her private grief.  She is amazing.

Please share this post and support Rosie using the hashtag #IStandWithRosie on Twitter.

Sam x

 

 

Ileostomy swimwear

I was a little nervous after my op about what sort of swimwear would suit me. I looked at a few specialist stoma swim wear places but couldn’t find anything I liked and so I have just stuck with my old stuff.

This dark swimming costume with large print totally disguises the shape of my bag and makes it feel secure against my body.

This was me on Christmas Day on the beach, it was a bit rainy and grey but I wasn’t letting that stop me jumping in the waves. My sister was another story though…

20140102-225634.jpg

For bikinis I’m going for a fuller bottom, either little shorts or high waisted bottoms.

Having my bag and scar out does cause a few stares but I’m mostly ok with that, it’s usually from curiousity than anything malicious.

20140102-230029.jpg

20140102-230044.jpg

Today I was sat on a beautiful Australian beach in a bikini, I got a few looks but as I people watched, it got me thinking about just how many different shapes and sizes we all are. Some of us a skinny, some bigger, some busty, some flat chested, some of us have scars or even bags stuck to our stomachs. But the most beautiful people around are those who are confident, smiling and having fun.

20140102-230527.jpg

So when people stare whether it is openly or surreptitiously, my first instinct is to feel upset, embarrassed or angry. I swallow it down and just smile.

20140102-230922.jpg

Most people are good, I have to believe that and so I take their stares as folk being curious about something different that they probably haven’t seen before.

I hold my head up and be proud of how awesome it is that my body has healed me and my bag is making my quality of life better.

Sam xx

Sydney!!

I have been in Sydney for just over a week now and all is going well. Travelling with an ileostomy bag is a lot easier than travelling during a flare up of ulcerative colitis.

I’ve been swimming, snorkeling and dealt with 40 degree heat and my bag has been just fine! I was nervous about how sea water and high temperatures would affect the bag but there have been no problems so far.

I’m kind of feeling the pressure to be completely on top of everything as I don’t want my stoma to ruin our trip.

There are times where the heat gets to me and my skin is sore, I feel tired and dehydrated. My stomach gets quite swollen and I have had two occasions where I have felt like there was slight blockages. (For the record I no longer eat mushrooms, oranges and spring onions sliced lengthways!)

Today my daughter made me feel great. She said “I’d vote for you to be the best person ever because you only had a big operation a little while ago and you do everything with us, mum I think you’re really brave because you just do it all and you have a bag on your belly!” I gave her a massive hug and kiss, it was really lovely to hear her say something so sweet!!!

There has only been one time where it got a bit much, I had a blockage and felt quite poorly – I had to have an hour laying down till it passed. I felt bad for this but I needed a little time.

I’m determined that the kids will have an amazing time and that my stoma won’t stop us doing anything.

We are having such a great time, I can’t believe how beautiful it is here. We are loving Australia!

Clothes haven’t been too much of a worry though occasionally I’ve struggled with getting longer vests to wear with shorts. With swim wear I decided against a special ostomy swimming costume as I couldn’t find one i liked, so I wear my normal swim wear. Either costume or bikini!

Wearing the bikini means I do get the odd stare, mainly from other children which I accept with a smile. It’s normal for them to be curious and want to look and hopefully the more they see things like this the more normal or becomes for other people. I have had one man openly stare with a disgusted look on his face, I thought he was going to fall over he was so enthralled with my bag!! At first I felt embarrassed and a bit upset but that lasted only a second before I felt annoyed. Really adults should know better, but I won’t let a few nasty stares put me off wearing my bag proudly!!

Here’s a few photos of our time in Australia so far.

20131228-213924.jpg

20131228-213941.jpg

20131228-214019.jpg

20131228-214042.jpg

20131228-214057.jpg

20131228-214129.jpg

20131228-214139.jpg

20131228-214218.jpg

20131228-214307.jpg

20131228-214323.jpg

20131228-214357.jpg

20131228-214428.jpg

Love Sam xxx

Feeling unattractive

Today has been a bit of a write off, after last nights abysmal sleep I spent the day feeling exhausted, emotional and just a bit crap.  There is no rhyme or reason to my emotions at the minute, sometimes Im feeling fantastic, really positive and raring to go, at other times I am feeling low, Im teary and finding things tough.

Today I am feeling very down.  I look in the mirror and see my scar and the bag and I feel so unattractive.

Before the surgery I was kind of upbeat and didn’t think I would feel bad about my appearance, I think after being ill for so long, vanity was the last thing on my mind.  But now the dust has settled and life is going on, it feels like an issue.  Im very conscious of smell – I worry that I smell of poo.  Timm tells me in all honesty that I don’t, and logically I know I don’t, the bags have filters and the output actually doesn’t smell like poo anyway!  I think its just that I am aware that I have waste sat in a pouch on my stomach and the fear of it sets in.

At times when Im feeling down, I can’t imagine how Timm can bare to be near me.  Surely it must put him off? He can’t really want to hug me or lay next to me in bed? With my gurgling stomach and bag of poo, why would he want to put his arm round me?  These feelings are tough.  My eyes are filling with tears now because those thoughts make me feel like Ive been punched in the gut.

Its hard to look in the mirror at the minute, Im both intrigued and disgusted by my new body.  Having to clean my skin and stoma means touching it and being aware of changes to my skin, but there are times when Id love to just cover it all up and not look at it, empty it, clean it.  There are times when I just want to stick my head in the ground and pretend its not there.

I worry Timm will not find me attractive any more, after all, if I don’t then how could he?  We had a chat today after I cried a LOT.  He is a wonderful fella you know, he tells me that this will never affect our relationship, that he loves me and everything will be ok.  He says all the right things and he makes it better.

The kids are honest.  Im glad of that but its still hard.  They tell me its ‘weird’ and that they don’t like seeing my stoma, they say that it upsets them and avert their eyes if they are with me when I don’t have my bag on.  We have always talked openly and honestly with the kids and the same goes with my surgery.  Its been a tough few weeks for them and Im so proud of their resilience and courage.  I can’t imagine how scary it is for a child to know their mum is having an operation and I was away from them for two weeks!  But I do feel sad, I feel like the bag is a barrier between us, they don’t like it and so they’re not as likely to sit on my knee or cuddle me and that is hard.  But I won’t push them, they need to deal with it in their own way at their own pace.  Im sure as time goes on, they will get used to it and it will just become normal.  Its such early days so I am sure things will get better.

Things WILL get better, I know that.  I will get used to my bag and it will become more normal for us all.  I keep threatening to do a quote a day on my bag a la Matt Helders (Arctic Monkeys) drum skins…

matt helders drum skins

Im thinking if I have to wear this bloody thing, then I may as well rock the shit out of it!  Im trying to think positively by looking at how I can still feel like me through all of this so Im looking at clothes that will work better with a bag, ostomy covers and even some nice underwear and swimwear.

I struggled with whether to post this today.  I do not want to come across as needy or whingy.  Or as one of those girls who say ‘oh Im ugly’ so that others say ‘noooo you are SO pretty’ – you know the type!  That’s not what this is about.  Anyone who knows me, knows Im a fairly confident person.  But I thought it was important to chart the negative feelings that come about with having this surgery.  For others who are going through this to know that there are other people who are feeling that their confidence has taken a bit of a thrashing.

I refuse for this to be an entirely self pitying post, so thinking of the positives…

It was our son Charlie’s 13th birthday party yesterday, Timm planned it all and made him a BMO cake from Adventure Time and it was fab, he just had some friends over to watch a film, Timm set up the projector in the living room so it was like a cinema and made a ton of pizzas and popcorn.  A lot of Charlie’s friends are budding musicians so they brought their guitars and all had a bit of  jamming session.  It was a lovely night made better by the fact that Charlie said we weren’t an embarrassment to him… High praise from a teenager!

BMO cake adventure time

Timm and I are continuing to plan for our trip to Vietnam and Australia in December – Im so excited.  I can’t wait for us all as a family to experience so many new things and it will have been 14 months since I saw my sister and her family so it will be fantastic for us to be together again.  The fact that I don’t have to worry about a flare up just makes it all so much better.  I joined the Ileostomy and Internal Pouch support group and have been looking on the forums for travel advice.  I got a Travel Certificate which explains to airport security that I have an ileostomy, you can get one either from your stoma nurse or the IA using the link above.

Just three more days till I am off the steroids! Woohoo!! I am hoping that once I have finished the steroids that problems such as insomnia and mode swings will stop too.  There’s a good possibility that my down mood today has been magnified by the meds, so thinking of being steroid free is a real positive thing for me to look forward to, I have been on them now for almost three months.

Im sorry that todays post is a bit of a pity party.  My negative feelings today have been really overwhelming, I have cried a lot and just felt really sad.  I haven’t been out of my pyjamas and barely made it out of bed.  But I know that there will be good days as well as bad and as rubbish as today has been, I have got through it and tomorrow will be a better day!

Thanks for reading, please feel free to keep sharing the blog with anyone you think it could help.

Love Sam xx

Patience and Recovery

Its been 17 days since my surgery and Im healing well. My wound is closed and I have no pain in it, the scar is about 6 inches long and as it was stapled together I have the line and dots of a staple scar. A friend told me that after she had surgery, her doctor told her to use any sort of natural
oil, grape seed, olive etc – that you didn’t need posh bio oils or other ‘scar healing’ lotions or potions, and to massage her scar for 10 minutes a day. The motion of massage encourages healing in the scar, it improves blood circulation and increases the collagen. She showed me her scars and they were thin white lines, barely visible. So I have taken this advice and I hope it will help mine too.

20130920-145854.jpg

My stoma nurse visited today, she is fantastic and answered a few questions I had. I have some soreness to my skin where the ileostomy bag sticks to my skin right at the bottom, she advised that I am carefully peeling off the top of the bag when I remove it, and then pulling it off quickly at the bottom. And yep! She was totally right, that’s what i have been doing! The enemy of anyone with a stoma is sore skin. Sore skin can become open wounds very quickly, open wounds are wet and you cannot stick a bag onto wet skin. So good skin care is vital.

Im less weepy than yesterday, I think part of my problem is that I am still tapering off the steroids and they are notorious for affecting moods and emotions. Today feels more positive but I am struggling with one thing. Patience.

Im not the most patient of people at the best of times. I can’t leave christmas presents under the tree without a good squeeze. If I hear that someone is planning something as a surprise Ill pick at them trying to get clues!

Physically I am healing well. I am still taking painkillers regularly but everything is going to plan. Im well on the road to recovery. Im doing slightly more each day, this week I had the trip shopping and last night we went out to dinner for my son’s birthday. But I feel it when I do more, I tire very quickly and feel the pain more. When I lay down at night, I ache. Im walking well now and working on my posture as I have been stooped for weeks in protection of my stomach.

But now I can do more, it is very difficult to have patience with my body. I know I have to take it really slowly, that doing too much will hinder my overall recovery and could cause problems but Im struggling!! Timm won’t let me lift a finger, he’s still doing all the cooking, cleaning, school runs plus running our business so I feel bad in not being able to help him. He tells me off and just wants me to have the proper rest and recovery. Its nice to be looked after but quite difficult to accept. Im so used to doing everything for myself so it takes a big shift in mindset to look after myself first and allow others to help.

So I try to be patient. I know I need to put trust in my body and give it time to heal and get used to the huge changes that have been made to it. Im grateful and happy that it is doing this so well! I have had no complications and everything is healing well. My stoma is functioning really well and the pain is lessening. I find that the time between painkillers is lengthening slightly. Im not watching the clock to see when I can have more which is an improvement! The body is a bloody clever thing and mine is doing a great job.

I want to get back to work as soon as I can. I run our family photography business with Timm (go check us out – The Picture Foundry) and also work with arts group Responsible Fishing and we have really exciting projects coming up, so Im looking forward to getting back in the saddle. Weirdly, I also want to do some house work – I can’t even believe Im saying that!!! Timm is doing a great job, but you know what its like, no one can do things just as you do (nor do I expect them to!!)

I really want to walk our dog Lola. I want to do some gardening. I want to sand down the piano and paint it. I want to go to the pub with friends. I want to sort out my whole wardrobe. And make all the craft projects I ever put on pinterest. I want to go pick all the apples on the trees in the garden. I want to go on a bike ride. I want to be well enough to be at my friend Corinnes birth. I really want that. I want to drive. I want to visit friends.

Patience. It’s a virtue right?

 

patience

 

I will be patient. I have to be because I need to allow myself to heal and not do anything that could set me back.

So Im doing nice things whilst I recover. I watch a lot of films on netflix, Im watching a lot of TED talks (TED is a nonprofit devoted to Ideas Worth Spreading. It started out in 1984 as a conference bringing together people from three worlds: Technology, Entertainment, Design) I watch a lot of documentaries. I thought if Im sat in front of the box I can at least be learning new stuff!!

I am knitting. Im a crap knitter, I can knit squares. So Im knitting a LOT of squares that will eventually be sewn together to make a blanket.

Im reading. Im a big reader anyway but my concentration levels have been really low for a while, its nice now to be able to read more than one sentence (over and over again!) I was bought a book called The House of Leaves over ten years ago and got a third of the way through it before giving up. Its a very difficult read requiring you to flip back and forward and read things out of sync. My good friend James has just started it and has inspired me to try again with it… If you fancy reading it you can get it on Amazon.

Im blogging. Obviously as you are reading. It feels good to blog, its very cathartic for me and I can’t believe how many people are reading! Since I started in July Ive had over 10,000 views of this site – bloody hell chaps!!! Thank you!! From the bottom of my heart thank you for reading and commenting. Thank you.

Im planning our trip to Australia!!! This is a fab one. We are going to Australia via Vietnam to visit my sister, brother in law and niece in December this year, its the most exciting thing!! I was so worried about the trip before my surgery, nervous that I would have a flare up and ruin the trip, that we wouldn’t be able to do the things we wanted to do as I would be ill and need to be close to a loo. So now I have the bag, its exciting!!! There is no reason I can’t do anything everyone else can do. The only thing I need to think about it making sure I take enough bags and products that I need.

I meditate. Now don’t laugh!!! Im not ommmmming away in a corner, but I am spending ten minutes to sit and close my eyes, relax and partake in a bit of mindfulness. Its ten minutes of quiet. Ten minutes of feeling myself grounded, concentrating on my breathing and clearing my mind of everything. It makes me feel centred and calm. So don’t mock – try it… You might like it.

And I try to be patient.

Love Sam xx