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Happy Anniversary

Today is our 11th wedding anniversary!

We married in Las Vegas in 2004 and renewed our wedding vows last year and I couldn’t be happier.

Life isn’t always plain sailing and we have had our moments of struggle, but we came through everything stronger than before and that Cleasby bloke and I, when we are together, we are a force to be reckoned with.

Over the last 2 years of surgeries, recovery and change, Timm has been my rock. The one person I can tell it all to, the one to hold my hand, to make it all better and to love me harder than ever before. He became my carer for a while and did it with love, sensitivity and respect.

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People tell me I am strong. But I am only strong because Timm is my roots, he holds me tall and supports my growth.

When life is good, he walks by my side, both of us smiling into the sun. But sometimes life just gets so heavy, my shoulders aren’t broad enough to carry the weight, that is when he steps in and scoops me up. When I need him to, he will carry the weight of both of us and does so with a smile. Then as it gets easier, he sets me down and we carry on our path together.

 

 

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I just hope that when he needs me, I will carry him in the same way.

Happy anniversary to my favourite person in the whole world.

Sam x

Dating older men – The Kylie/Tyga furore

I don’t watch The Kardashians, I am not a fan of Tyga, (I’ll be honest, I had no idea who either Kylie or Tyga were before yesterday) yet I found myself googling them after my twitter feed became filled with a slut shaming, paedophile questioning bitchfest.

So, incase you too are in blissful ignorance of this story, Kylie Jenner is the 17 year old sister of Kim Kardashian and has begun dating a rapper named Tyga who is 25.  They have been publicly mocked and there have been many comments discussing whether this man is a predatory sex offender for dating a girl 8 years his junior, whilst other “celebrities” have waded in calling each other sluts and hoes… Classy right?!

So why do I care?

Well, at 17 I met my husband, who was 26.  It raised a few eyebrows, but we shrugged and got on with getting to know each other.   Sixteen years and three children later, we are still together, very happy and the nine year age gap is unnoticeable.

I genuinely don’t care about these so called celebrities, I have no interest in reading about their sex tapes, clothes lines or celeb drama.  But I do find it interesting that people on social media have shown such outrage at the age gap.  That Kylie has been called a slut and a slag, she has been picked apart and mocked. Tyga has been called a paedophile! He has been ridiculed and there are many suggesting he groomed a child.

Whilst dating a man 8 years older than you isn’t the norm for all 17 year olds, you can hardly call the life of a Kardashian normal, here is a girl who has grown up on TV, she lives a celebrity lifestyle with all the riches and benefits of having a lot of money.  Her relationships will be shaped and moulded by her experiences, the average 17 year old doesn’t get offered clothes lines with TopShop do they? So it is hardly surprising that her choice in partners doesn’t fit with the average mould.

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My life was far from Keeping up with the Kardashians, I lived in and out of my family home from the age of 14/15.  With my sisters, aunties, friends and in a terrifying flat in Sheffield where I left after having all sorts shoved through my letter box and being afraid to leave the house.  I had an absent father and a step father who wasn’t my biggest fan.  I wonder if there is a reason why I have always dated older men? At 16 I dated a man in his 30s…  I sometimes joke that I have father figure issues!

The reality is that I met and fell in love with a man.  We grew together, learnt together and joined as one and made a family.  He was nine years older than me and I was 17.  But that age gap is not what our relationship has ever been about, we have so much in common, we are different in many ways, but that just compliments each other.  We just fell in love.

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I am not an advocate of age gap relationships, I am an advocate of being open to who you fall in love with.  And as long as relationships are filled with love, trust, respect and care, then whatever the age difference we should be accepting of how other people want to live their lives.

 

Sam x

Chronic Illness and Parenting – am I a shit mum because of my shit disease?

I’ve been thinking a lot about how my illness has affected my children and the relationship between us. I have three kids and every day they amaze me with their intelligence, kindness, character and awesomeness.

Till 2010 my husband’s job took him away from home for up to nine months of the year. So my kids (born 2000, 2003 and 2005) and I were this super close gang. The four of us were together all the time and though, of course Timm was a huge part of all our lives, it often felt like I was a single parent.

Even when my Ulcerative Colitis was bad, we would still be this team as we had no other choice! We had help from my mum, sister and friends but we got through it together. The kids didn’t really understand, which I’m glad of. They just knew that sometimes I was poorly and we would have film nights where we all slept in one bed and hung out. It meant I could rest and know they were are safe with me.

Timm stopped working away in 2010 and it changed our family massively and for the better. The kids loved him being at home and we started our photography business together. It made all our lives better.

When I was at my sickest in August 2013, I thanked my lucky stars that his job meant he was home to care for the children and give them the support they needed. I had a few weeks in hospital and then came home without a colon but with an added ileostomy bag. They had been so worried whilst I was in hospital and their concerns upset me. I hated that my illness was making them so sad.

Then when I got home, my bag and scars, the staples holding my body together, my tiredness and weakness scared them. They became afraid to hug me. Fearful they would hurt me. And to this day, though totally understandable, it is the toughest thing I’ve gone through. My babies being too afraid to hug me.

Fastforward eighteen months and they’ve learnt so much. My second surgery took away my bag and replaced it with my Jpouch. Though they knew more, and were less freaked out this time, they suddenly had to learn to live with a mum, who once again would run out of the room to dash to the toilet. Who couldn’t eat certain foods, who takes medication that cause drowsiness.

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This journey I have been on has been tough on me, but my kids have been through it too. They’ve had to see their mum disappear onto hospital wards for weeks at a time. They all freak out when I have even a scheduled clinic visit now, terrified I won’t come home for weeks. They have had to learn so much and I truly believe that though it’s tough, and I wish they didn’t have to go through it, that they’ve come away as more empathetic, kinder, more open humans.

The problem with chronic illness is that it isn’t about a few weeks and then life going back to ‘normal’, the illness IS life and it’s learning to reassess how you live this odd life that you never planned for.

Currently I have awful fatigue, sleep problems, anxiety, pain, toilet and diet issues. I take high dose codiene every day that make me drowsy. I struggle to wake before 9am. I know I am tetchy, self absorbed, distant and sometimes just absent.

The kids have had to lean on Timm both emotionally and physically. This isn’t a bad thing, he’s their dad!! But for me, it’s a struggle to see him take over all my roles. This is such a selfish thing to say. The kids are fine and so is Timm, so much so that I occasionally doubt whether I’m necessary at all!!

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This is selfish and all a bit me, me, me, but I’m just going to blurt it out anyway…

It hurts that they go to their dad instead of me. It hurts that they want him to do bedtimes, it hurts to know they ask him for advice instead of me. It hurts to feel left out. It hurts to feel my illness is a barrier between us.

I’m scared they’ll think I don’t care. I’m scared they think I’m lazy. I’m scared that when my head is so full of my own pain, anxiety and distress that they will think I wouldn’t drop it all in a second for their needs. I’m scared they won’t need me anymore.

See, told you it was selfish!!!

Because when I put my brain into gear and tell my heart to shut up, I am so proud of my family! I’m so happy to see Timm having this amazing bond with the kids that he missed out on when they were small. I’m proud to see them growing into confident, self assured, wonderful young people.

When I see that Timm has learnt to plait hair because I can’t function in the mornings and Ellie needs help, my heart swells. When Thom tells his teacher that it’s daddy who helps him with all his homework, I thank the day he stopped touring. When Charlie has an awe inspiring role model of a dad in his life, I am thankful and blessed.

Don’t get me wrong, they aren’t angels, and my illness makes me blame myself whenever one of them does something wrong. I can’t help but think that if only I was more present and full in their lives at the moment, that they wouldn’t have made that mistake.

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When I tell them off and perhaps shout a little louder than necessary because I’m in pain. Or I’m too short with them because I’m desperate to go to the loo. Or when I’m distant and perhaps seem cold because I haven’t slept a full night for two years and I’m so exhausted I could drop. All those things swirl through my head for days, just worrying me that their childhoods are being scarred by my illness.

I just hope that they understand that my illness has played a big part of all our lives, but that I have always loved them, that they are always the first thing I think of in the morning and the last thing before I sleep, that they are the best things I ever did and always will be.

I hope one day I can explain to them that I wish it could be different, that being ill is tough but feeling like I fail them is tougher.  I hope they will know how much they mean to me.

And that I’m sorry that there were times that my illness may have hidden these truths from them.

Sam xx

 

 

 

Life with chronic illness – what it's really like

“Get well soon!” That’s just one of those every day sayings right? But what if you have an illness that you will never get better from? The worst part about having a chronic illness is that it is a life sentence, unless there is some miracle cure, if you have a chronic illness, it will be with you for forever, there is no getting better soon, no happy ending,  there is no end in sight, there is no cure or end game.

And that is why, often it isn’t the physical pain that is the hardest thing to deal with, it’s the emotional pain that goes along with it.  The guilt, the idea that you are a burden to those around you.  It can feel like you are being crushed, that the illness is drowning you and swallowing up the person you are, leaving only this shadow of a person, a patient, weak, ill. It is so hard to deal with this.

How on earth can you fight this emotional suffocation when the root of it is never going to leave you?  If you have a ‘normal’ illness, you see the doctor, get a diagnosis, receive treatment and get better.  Chronic Illness just doesn’t follow that path.  Often diagnosis is difficult as the symptoms can be confusing and varied, it is so hard to quantify a tiredness that never goes away, or a feeling that your limbs are lined with lead.  How do you explain that your mind whirs constantly whilst simultaneously feeling like it is filled with porridge?

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Being ill in this way is living with the unknown.  Every day is different, it’s hard to plan when you have no idea how you will feel when you wake up, not knowing whether you will feel ok or like you are 100 years old.  And so it is hard not to feel anxious, depressed or completely lost when you are in living one huge question mark.  There are constant questions and often no answers.

When people say “Get Well Soon” or ask how you are feeling, it is an uncomfortable exchange, you can either lie and say ‘fine thanks’, or horrify them with honesty ‘Well I have a slight blockage, a hernia, I have been to the loo 16 times today, the acid in my poo has burnt the skin on my bum and I am so tired I feel like I am dying’ or the one I usually go for is ‘getting there!’ with a cheery thumbs up…

People don’t know how to deal with chronic illness, both the person who has it and the people around them.  There is no guidebook for lifelong illness, no way to answer all the questions because it is so personal and there are so many illnesses that are a lifelong battle.

When you have an autoimmune disease, your body is literally fighting against itself.  The physical side of it is all through the body, living with daily pain, fatigue, aches, toilet trips, medication, food intolerances along with hospital trips, surgeries, treatment.  It is, at times, too much to bear.

But mentally and emotionally it is devastating.

The title of this post is ‘what it’s really like’ and I want to try and explain how I feel mentally…

I feel like my body is a failure, that it lets me down constantly.  I feel guilty.  I feel like a burden to others.  I feel like I let down people around me.  I feel like someone has a grip on me, a crushing hold on my chest that is squeezing the life out of me, holding a pillow over my face.  I am exhausted from trying to be stronger than I feel.  I feel a sickly jealousy when I see healthy people.  A heavy hearted knowledge that my illness affects my husband and children, that I am not the wife he deserves or the mum they need.

I feel a sadness that sits deep in my bones, a guilt that is a lump in my throat stopping me from speaking and an embarrassment that my body is so broken.

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That is a bad day.  On a good day where I have little pain, few toilet trips and energy in myself, I feel upbeat, I feel proud of myself, I enjoy life because I know this healthy feeling may only be brief, I love harder, I am more open, I laugh longer, I am silly, I am fun. I have hope.

And hope is key.  Without hope, we have nothing.

This is life and so you have to learn to live it.  And LIVE well.  Your life may not be the one you have hoped for, the life you ever imagined.  But is the one you have and there is nothing you can do to change that.

You can’t take anything for granted, and sit on your laurels, you are ill but at least you have a life, there are many facing cancer and other illnesses that are terminal and so you can’t feel sorry for yourself.  (Not all the time, but sometimes everyone needs a full on mope!)

You learn to embrace and enjoy every good day you have, as you don’t know when the next one will be.  You learn to appreciate the small things, the good things in your life.  You take control of your own destiny and try everything you can to make your health better, through diet, medication, alternative therapies, talking, sharing, living…

Being sick makes you a lot of things, many negative, but some can be positive. Strength. Weakness.  Empathy.  Guilt.  Wisdom.  Fear. You have to take the lows, but learn to see, embrace and appreciate the highs too.

What is living with a chronic illness like? This is my story, but ask others.  You have a friend with ME/CFS? Lupus? Rheumatoid Arthritis? IBD? Don’t be afraid to ask questions, talk about it, tell them you want to hear how they actually are, not just ‘fine’.

The isolation attached to Auto Immune and Chronic Illnesses is immense and I feel that if we could all talk a little more about our lives, that we can help each other to bring discussions about illness into everyday life and make a difference to so many people.

This is my life with chronic illness.

Tell me about yours…

Sam xx

Tired, emotional, guilty

I’m so tired. And the tiredness leads to anger, hurt, guilt.

I have no idea whether fatigue is something I just need to accept? Whenever I mention it to the doctors they look at me like I’m daft. “You’ve been through a lot” they say, “give your self a break”, “it all takes time”. Perhaps I expect too much of myself, but I really just wish I could be normal.

Every night, I get up once or twice to empty my jpouch, several times a night I wake thinking about whether I need to go to the loo. Since surgery I tend to have these vivid dreams, you know the ones where you feel like you’ve had a workout when you wake up? I also sometimes have stomach pains, butt burn and accidents.

So when morning comes, I just can’t open my eyes. I just don’t hear the alarm and Timm gets up with the kids. Every day. And the guilt builds… I wake up feeling so drained and exhausted that I can barely function. My limbs are like dead weights, my head fuzzy, my brain screams at me to go back to sleep. I feel lazy and guilty.

Timm leaves me to sleep as long as I need to. He never mentions it apart from asking if I had a bad night. But the guilt inside me is enormous, I feel I’m letting them all down. I feel like everyone thinks I am lazy.

I usually get up at 9am, a full two hours after I should get up. Some days I manage to get straight down into the office, some days I work from my bed. By midday I feel more energised and I try and get as much as I can done, but by 4pm I am flagging massively and could quite easily nap. Evenings are better for me, I feel more awake and often try and get housework done in this time. Then I’m usually in bed by 11pm (sometimes way earlier).

I don’t know whether it’s my routine that isn’t helping? Some nights, despite being completely exhausted I just can’t get to sleep and lay awake for hours.

Or I wonder whether it’s my diet? I have found I am now really intolerant to most vegetables and so my diet is quite restricted. The lack of vitamins and minerals worries me. I’m waiting for an appointment with the hospital dietician and have thought about asking to have my b12 levels checked. (People missing certain parts of the colon will have difficulty absorbing vitamin b12 and some need regular injections).

Sometimes I realise I don’t remember what normal is. My normal is so far away from other people’s that I wonder if my comparing myself to them is stupid?

When I say I’m tired, others talk of their tiredness too, and I think maybe I’m just not as tough as most people! Then I remember that my body has been through so bloody much in the past 18 months. That I’m missing an organ, that I’m learning how to use my pouch, that my body fights against me eating most healthy foods, that my immune system is knackered.

The thing I need to deal with the most though is the guilt. I feel like I need to apologise to Timm for how rubbish I am in the mornings. I feel like a bad mum and a rubbish wife.

I feel I need to explain to everyone that often I have a big front on. And that front is the mirage to tell you “I’m fine!” “I’m not weak” “I’m as good as you” “I don’t need anyone’s help”.

So when I’m seen on Facebook or instagram in the pub or walking the dog, know that it takes a big effort to do that, and I do it because I want to have the same abilities as others, I don’t want to be sick.

Know that every journey or trip requires planning to know where toilets are, a packing of wipes and underwear, a knowledge that using public toilets is an embarrassing experience because of the noise, that I’m using up valuable spoons to do that thing and will suffer for it later.

Please just have a little understanding that despite my brash, shouty, activist exterior I am still healing, still learning how to accept and use my new body and still dealing with the emotional trauma that the past 18 months have thrown at me.

Sam ✌️&❤️

2014 – what a year!

What a year! I started 2014 in Sydney with my sister and our families, we travelled up the coast and had an epic road trip.  It has also brought me a hernia, a house move, surgery to create my jpouch, a couple of weeks in hospital, a new life learning to live without my colon or ileostomy bag and one more hernia!

I have been on the radio a few times, done talks all over the UK, hit my 100K views on So Bad Ass (now up to 160K) and started a writing course.  I also visited my aunty and uncle in Spain and honeymooned in Lanzarote with Timm  I made a new friend who has a stoma… we made friends because we have no colons but stayed friends because we are awesome and he makes me laugh in a rather unladylike fashion and knows, like really knows…  I made new friends without stomas who I now feel like I have known forever and I hung out with so many old friends who made every tough part of my year easier and every lovely part of my year happier.

We bought a hot tub, I got a big tattoo, I met Chuck D and Flavor Flav, went on a nudist beach and my sister came over to the UK to visit with her family.

I renewed my wedding vows to the best husband in the whole world in the BEST WEDDING EVER surrounded by all my absolute favourite people and married by one of my best friends Violet.

2014 has had it’s ups and downs.  The wedding was amazing, it was just the most beautiful and perfect day and to get to marry my perfect bloke for the second time was the best thing ever and my total highlight of the year.

The surgery was tough, 10 days in hospital after a long, difficult surgery and now 7 months later I am still recovering and learning how to deal with my jpouch.  The past 18 months have been the toughest of my life.  Being so ill and having life changing surgeries have been at times almost too much to bear, there were times when I felt so low, so broken and in so much pain that I just didn’t know how I would cope.

I learnt that coping is the only option.  Every day, no matter how hard it is, you have to just keep plodding, just keep swimming, just keep going… Having fantastic people around you helps and I am lucky enough to have some of the best.  My amazing husband, family and friends make it all bearable in those dark moments and I can’t thank them enough.

This year has seen So Bad Ass turn from a small personal blog into something that is read all over the world and (hopefully) helps people.  All I ever wanted from this blog is to make a difference to other people, to use my pain and my journey to help other people with IBD, to use it to raise awareness, raise money for Crohns and Colitis UK and to help people everywhere to have better self esteem, body confidence and to love themselves.

You are all amazing and I thank you from the bottom of my heart for every read, every like, every tweet, every share, every kind word.  You are awesome!

Enjoy and I will see you in 2015!

 

xx

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Thanks again for an amazing year, if you fancy doing something wonderful please go to my Just Giving page and give whatever you can to Crohns and Colitis UK.

 

Have an amazing christmas and a brilliant New Year!

 

See you in 2015

 

Sam xxx

Wedding Video

As some regular readers may know, on 6th September 2014 Timm and I renewed our wedding vows after 10 years of marriage.  It was at the end of the toughest year of our lives, almost exactly a year before I had a subtotal colectomy and ileostomy and 4 months before I had another big surgery to create a jpouch.

This year was HARD and there were times that we really considered cancelling the renewal of our vows but we decided we would go with it, we wanted to celebrate together that our marriage was stronger than ever despite the enormous pressures we had faced and we really wanted to celebrate with our family and friends and have a day filled with joy, love and happiness.

We invited Helene from Cuckoo Films to document the day for us.  We wanted an overview of the wedding renewal and something that would show our personalities.  We are blown away with the result.  I cry EVERY time I watch it and just feel so blessed and happy.

Thank you tons to John Ashton of Little Gem for the amazing soundtrack.

 

Enjoy x

 

Carers. Actual superheroes…

People sometimes tell me I must be very strong to deal with the illness, surgery and recovery that I’ve been through over the past ten years.  The truth is that the strongest person in my house is Timm, my husband.  You see, he has dealt with everything I have been through too, but he doesn’t get the support that I do.

Timm is my carer, he looks after me every day both physically, mentally and emotionally.  Part of me HATES this, I despise the fact that my husband has to look after me in this way, I want us to be equal partners and I feel bad that he has to care for me.  But the biggest part of me has just the hugest amount of gratitude and love for the man.

Carers are superheroes in my eyes and a grossly under appreciated resource in this country.  I can’t even imagine how I would have survived the past year without Timm in my life.  Not only did he take on all the responsibilities of the kids, housework and our business, he had to become a nurse, a therapist, an advocate and an all round hero.

 

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Whilst I was recovering from surgery, Timm was brilliant.  As I lay in bed, resting and allowing my body time to heal, he did EVERYTHING.  But now four months down the line, I’m sad to say he is still being my carer and looking after me.  As I have blogged, things are not great at the minute with my jpouch, I am going to the toilet 15+ times a day, getting up through the night several times, I have massive fatigue and mentally I am not in a great place.  And this is where being a carer gets so much harder.  It is not about a brief period of nursing, when you are a carer of someone with a chronic illness, it is a life long relationship.  And that must suck.

I write this today whilst I am sat in bed.  This morning my husband got up with the kids and sorted them for school, he then got ready for work and came up, kissed me and told me to “rest, sleep and feel better”.  Every night I am waking 3-6 times and so I never get into really deep sleep so mornings are terrible.  I am so tired all the time!  I feel drained from pooing 15 times a day, I am fatigued and have this ache deep in my joints.  Yet the worst feeling is guilt.

I feel so guilty that I am not working, we run a photography company The Picture Foundry and currently Timm is doing everything.  I feel guilt and sadness that our ‘partnership’ is very one sided at the moment.  None of this is coming from him. He has never done anything to make me feel like he is fed up with this, he is never anything but supportive and wonderful.  It is all from me, I wrote recently about chronic illness and fatigue and there I talked about a feeling of waking with a desire to take over the world, that I feel I have a million ideas and want to do EVERYTHING, but then my body reminds me that it is broken and feels like a 90 year old!

 

being a carer is hard work

 

I just wanted today’s post to be a little recognition to the people in our lives who look after us.  Being a carer for someone you love is a role thrust upon you not usually one you would choose.  It’s a special thing to have the patience to care for another person, I know that Timm would brush this off, he would make a joke and say that he does what anyone would do.  This is one of his best qualities as a carer, he jokes about it, he takes the piss out of me, it isn’t all serious, he makes me laugh when the last thing I feel like doing is laughing and always makes me remember that my illness doesn’t define me.

If you are a carer then please go take a look at Carers UK, it is a great resource for anyone in a caring role and gives some pretty interesting statistics plus help and advice. There’s a statistic that says that 1 in 8 people in the UK are carers and that saves the state £119 billion.  Take a peek at the forum to speak to other carers.

There are also support services specifically for people with IBD and their friends and family, take a look at Crohns and Colitis UK.

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I just want to thank Timm once again for being so bloody awesome, he is just the best bloke in the world and makes every single day better for me.  I don’t know how he does it and keeps all the balls up in the air, he is juggling business, family, home and my health and does it all with an amazing sense of humour, a kindness that breaks my heart and constant love and support.

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Love Sam xx

 

 

Nearly doesn't mean anything at all!

Reason 3,459 that my husband is awesome.

Timm – “how was your evening?”

Me – “not great. I nearly crapped myself at the supermarket”

Timm – “Nearly?”

Me – “yeah, I was ok and got to the loo but I’m feeling pretty gutted and upset about it”

Timm – “Nearly doesn’t mean anything at all!! Nearly means you didn’t crap yourself. Hooray! You know you don’t get sent to prison for nearly robbing a bank! Nearly means nothing.”

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I do love that boy an awful lot.

Sam x

#cleasbysinlove

The wedding renewal was last Saturday and was just perfect…

I will do a full blog post when I get my photos and video back but till then all I can say is that it was the best day of my life…

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You can see a sneak preview of just a few of our photographs by our very talented photographer Mark Tierney from Tierney Photography here.

 

Sam xxx