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Tramlines – what a difference a year makes

Tramlines is a city centre festival in the great city of Sheffield, it’s an amazing thing and my lovely husband Timm is one of the festival directors and the production director so each year I’m lucky enough to get a little pass that allows me to hang out backstage and have a generally fantastic time.

But it also serves for me as a fixed point in time that makes me realise how far I have come in a year. You see, at last years festival I was ill. I was 5 months into the worst flare up of my life but I was trying my hardest to hide it.

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This photo was last year, I felt like death warmed up…

I was on a lot of meds and in my heart, I knew this time felt different. I was bleeding constantly, I had to wear pads in my pants as there was just so much blood. My stomach was agony and I was running to the toilet every few minutes. I didn’t feel up to going to be honest, but felt it was important to try and be normal and to show Timm my support.

I remember standing near the loos after yet another mad dash, doing as fast a walk as I could get away with, without looking insane to the toilets. I was with Timm’s sister Nancy and friend Michelle and I was telling the that things weren’t good. I’m close to Nancy and she knows everything about my illness and is a massive supporter of me and this blog.

I was telling her about the possibilities of future surgery, I remember quite naively saying that after the second op they just join everything back up and I’d live a normal life pooing just a little every time I had a wee! It all sounded so simple on paper and easy to describe, I don’t think I’d put my emotions into it and thought about the emotional and mental changes that would occur.

The whole conversation was very much hypothetical, I knew about the surgeries but had no idea that within 5 weeks of the day I would be on the operating table having my large intestine out.

So Bad Ass didn’t exist at this point, I was still quite embarrassed a lot of the time about my disease. Family and close friends knew but I kept it quite under wraps. I spent the weekend throat tightingly close to tears as I just felt so poorly and under so much pressure (from myself) to keep it together.

So roll it forward one year and I just can’t believe all that has happened in the last 12 months! This years Tramlines has been amazing. I stood in pretty much the same spot with Nancy and Michelle thinking how good it felt to be on only one medication (loperamide) that has NO side effects that cause me to get a big swollen mood face, manic episodes or total insomnia!!

A year into writing So Bad Ass, pretty much everyone knows what I have been through and so I felt no pressure to hide anything. I got so many amazing people coming up to me to tell me they read my blog and love it. It was quite emotional to know that I have made a teeny tiny difference to peoples lives.

Friends, Timm’s work colleagues, total flipping strangers(!!!) were coming up to me all weekend to tell me what So Bad Ass means to them and I just can’t tell you how much that means to me. To know that my little blog is being read, shared and is helping others makes me feel humbled and just blown away. Thank you.

One year on, I have learnt about my own strength, I’ve found a confidence I didn’t believe I possessed and though my health isn’t perfect and I’m still on a road to recovery from my j pouch surgery, I feel good!!

I watched lots of amazing bands, hung out with too many awesome people to name, laughed with fantastic friends till my stomach hurt, spent the weekend with my three kids hanging out with me, watched Everly Pregnant Brothers, the best northern, ukulele, pun based band you will ever hear, on Kelham island whilst the sun set.

I jumped about and went mental whilst watching Public Enemy then met Chuck D and Flavor Flav (yeahhhhhh boiiiiiiii)

I watched a woman hang by her feet and juggle swords upside down.

I drank my body weight in gin and peach iced tea.

I saw so many friends and got to hang out with them (even if it were only briefly with some)

I felt confident and well.

I felt no shame.

I felt happy.

Thank you Tramlines for the best year so far, I had a blast!!! Who knows where my life will be in another years time?!

Here are some of my favourite photos of the weekend…

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Back to work!

At six weeks post surgery I made the decision that I wanted to start working again. Luckily I work from home, I run a photography company with my husband Timm called The Picture Foundry Timm has been carrying the weight of the business for the last couple of months and so I wanted to try to get back into the office.

It was great as there was no pressure from Timm, I knew I could do just as much as I felt comfortable with and could go back to bed whenever I needed to.

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It feels good to be back in the office, laying in bed all day may sound heavenly but when it is not through choice it isn’t much fun.  Its lonely and doesn’t help self esteem.  I needed these six weeks as before now I just haven’t been able to think about anything other than pain, tiredness and poo.  I have been on heavy painkillers that make my mind fuzzy and running to the toilet frequently.

But now things are starting to improve massively and so I want to be back in the chair. I want to be working and I want Timm to have a tiny bit of pressure taken off him.

It is so easy to get into a habit of not moving about and by the end of my first day in the office I was in quite a bit of pain just from being sat up rather than laid down.  The muscles in my stomach, back and legs have already forgotten how to just be upright for most of the day!! I am sat on my frankly hilarious donut cushion which really helps in the butt department.

I know I am so lucky, I have worked for other people before and it hasn’t worked out due to my illness and toilet issues, I honestly couldn’t imagine having to go back to a full time external job right now, but as a self employed person I have the benefits of being at home and having the full support of my husband in our day to day work.

I am taking it easy and Im not taking on too much, I will be sensible and Timm wouldn’t let me do anything he thought would hinder my recovery.  It feels good though.  I feel like I have a worth and Im not just a patient…

Love Sam xx

On the mend and my first day out

It’s been six weeks post pouch surgery and since I started on the loperamide last Monday, things have improved massively.  Last week I was going to the toilet around 20 times a day and having 2-4 accidents a day which was heart breakingly depressing.  Dr Brown said I needed to figure out how much or how little of the meds to take to slow down how often I need to empty my pouch, I started high at 4 tablets which was too much, I ended up with a lot of bloating and terrible stomach pains.

I have brought it down to 1-2 tablets and this seems to be working well for me, I am now going about 5 times a day and accidents are a lot rarer! I have found that most days I am ok in the mornings as my stomach is empty but it gets worse in the evenings and so I’m taking the loperamide at tea time.

It is embarrassing to talk about this, I cringe at the thought of people knowing how it has been but this blog is about honesty and I am going to document the bad times so I can appreciate it when the good times come.  There is also a lot of bad press about j pouches, I have seen in many forums people saying they wouldn’t ever have pouch surgery as it’s too much like going back to illness with the recovery.

I still have some discomfort but I am down to just occasional pain relief rather than every 4-6 hours as I have been.

On Sunday I had my first day out. It was tough mentally, I had a little cry as I tried on forty outfits to find something I was comfortable. I’ve lost quite a bit if weight and everything just looked ODD. I’d developed a good wardrobe that worked well with my ileostomy bag but now I’ve lost my way a little. Wearing pyjamas for six weeks does that to a person!

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We had a family day out at Cliffhanger, a family activity festival in Sheffield and then on to L’eroica in Bakewell, an Italian bicycle event with music, food, drinks and general loveliness.

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It felt weird being out in public and I felt quite self conscious and a bit fearful. I was very glad to have Timm’s hand to hold, which is an odd feeling for someone like me who is usually confident and independent. But it was really lovely. A tiny bit of normality in a family day out and it lifted my spirits hugely.

Even having to use outdoor portaloos was ok. I felt the urge to go and panic washed over me a bit, but is told Timm and he just took my bags and said “go! We’ll find you!” So I set off on walking, fast enough that I wouldn’t shit myself yet nonchalant enough that I didn’t look like I was about to! It was all fine though and it felt like a little victory for me.

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It was a big step for me to be out for the day. I felt quite emotional, it just felt so good to feel like a real family after weeks of me being a patient whilst Timm cared for me and the kids. It reminded me why I have gone through the last year, that I wanted to get to a point in my life where it wasn’t all just about illness.

I still have a long way to go,but this first day out felt like a really great first step on that ladder.

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Love Sam xx

5 ways to keep a relationship strong through chronic illness

All relationships have ups and downs, it can be hard work to keep a strong relationship when times are tough.  I thought I would write about how chronic illness can affect a relationship and ways to get through the shitty times to stay strong together.

I met my husband Timm 15 years ago in a nightclub in Sheffield called The Leadmill , (Im sure EVERYONE in Sheffield met one partner or another there…) we married 10 years ago shortly after I had been diagnosed with Ulcerative Colitis so it is a disease we have learnt about together through the years.  Last year I had a subtotal colectomy and lived with an ileostomy for nine months, then just weeks ago I had pouch surgery to reverse my ileostomy and create a new bowel pouch.

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During my ten years of illness I have faced extreme fatigue, bleeding, aching joints, diarrhoea 30 times a day, incontinence, so many different types of medicines and treatments, endless doctor and hospital visits and stays, two surgeries, a compromised immune system that means I pick up every bug going and more days than I can recall that I just couldn’t get out of bed.  During this article I am talking about Ulcerative Colitis but the same goes for anyone living with chronic illness.

1. Be honest with one another

Being chronically ill sucks, it makes you feel alone, and filled with anger, sadness, guilt and hurt.  It is so important to be able to share how you are feeling with your partner and for them to share with you.  It is hard to share those feelings with someone, and even harder to hear them from someone you love, but you need to make time to share honestly and openly.

Without honesty it is easy to start to assume how the other person is feeling.  Right now I am recovering from surgery and I am so exhausted that I spend a lot of time in bed.  I lay here thinking “I bet Timm is feeling pissed off that Im just laid here.  I wonder if he is angry with me? Maybe he thinks I am lazy.” These thoughts tumble round my head and can make me feel shit.  I don’t allow them to though and I spoke to him, explaining my worries.  His answer was that he is a little quiet at the moment because he feels under pressure to be working, looking after the children and caring for me and he was worried he was failing at it all.

Open, honest communication really is the key to any strong relationship.  It may not be easy, but it is vital.

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2. Grieve together.

After my surgery I felt a deep, heavy loss.  I mourned the loss of the body I had, the life I had.  My husband mourned the loss of the wife he knew before illness.  We had to face this together so that we could support one another and learn to accept the new body and new life we had.

To move forward together you need to face your joint fears, get through the sadness and feelings of loss together so you can learn a new way to cope.  Your life after diagnosis may be completely different to your life before but it doesn’t mean it has to be worse.

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3. Step into each others shoes.

Life may suck hard for you if you are chronically ill and facing a life that you never planned for, but you need to take a step back and think of things from your partners point of view.  Think about how difficult it is to see the person you love in pain, how it feels to have to take on the lions share of work or household responsibilities, how it could feel lonely or frightening, how you may feel you have to be the strong one all the time.

On the other side partners of those who are ill need to try and look through the eyes of someone who is chronically ill.  Imagine having constant pain and stress, of having continence issues and the whole host of shame and guilt that comes with that, think how it feels to be ill but feel guilty for it, to feel helpless and useless, frightened of both the illness and the affect it has on the people around you.

If you can both do this, then it is an amazing starting point for discussions about love, support and care.

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4.  Stay intimate

Chronic illness means different levels of illness at different times, it is easy to push away your partner, especially when the issue is IBD as having problems with diarrhoea and bleeding don’t really put you in the mood for sex!  But its really important to make sure your relationship with your partner retains some level of intimacy.  A relationship without intimacy is a friendship, which may be fine for some couples but if that isn’t what you want then you need to address the issue.  Its not just about sex, it is about being close, hugging, kissing and showing each other love and care.

Talk openly about what you want and when.  Sometimes I feel that my illness takes away my sexuality, when Im very ill I just don’t feel sexy, I don’t feel desirable or have any interest in sex.  But thats ok when I tell my partner that, when I explain why Im feeling the way I do it is easy for him to understand and respect.  Without talking it is easy for him to feel pushed away and uncared for.

Equally you need to accept that your partner may have fears or issues with being close to you, they may worry about hurting you or making you feel uncomfortable.

The answer is always to talk, talk, talk.

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5. Enjoy the things you have

Ok, things are different, this may not be the life you planned but it is the hand you were dealt so learn how you can make the most of it.  If you are with the person you love then you are lucky, make it work for the two of you! When you are ill then plans of nights out and country walks may be out of the question, but you can replace them with movie nights in or hanging out in the garden.

Show each other that you love one another, there needs to be no grand gestures, this isn’t about diamond rings, it is about saying ‘I love you’, ‘I appreciate you’ ‘You make my life better just by being in it’

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My husband and I have faced the toughest year of our lives, two surgeries, multiple hospital stays, meds, recovery and a lot of tears.  It could have torn us apart, we have been under so much pressure, emotional, financial and physical but it actually has brought us closer together.  We have never been closer in the whole 15 years of our relationship and that has come through us both taking on board these five rules, talking, loving and appreciating one another.

 

Love Sam xxx

 

Surgery postponed

I got a call today from my consultants secretary saying that the preliminary date of the 30th April is being postponed.

Mr Brown wants to see me to discuss some matters before the surgery and so everything is on hold right now and I’m not sure why.

I asked if it were anything to do with my pre op but she said that all came back fine. I’m waiting for her to call again to let me know an appointment date to see the consultant and hopefully a little more about what the problem is.

Today sucks ass.

I’m feeling totally broken and beaten down by it all. My hernia is uncomfortable every day, I’m exhausted and feeling crap. I just really want the operation over and done with so I can start recovering.

When I feel like shit, there is one person who makes it all better, Timm, my husband. And so this afternoon we snuck out for an hour to walk the dog and talked through how we’re feeling. We acted like teenagers and even had a couple of ciders in a field!

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I have a (preliminary) surgery date!

I had my pre op appointment at the hospital this morning, I was nervous about what they would do but it was a really simple process of a few different health checks.

I had bloods taken, they are doing FBC, checking markers etc but also need to do a check on blood type as apparently if you have had a blood transfusion your antibodies can be very different.

They did swabs for MRSA and gave me a pack of swabs to do it again at home before the op.  This is because Im classed as a ‘regular visitor’ to the hospital… No shit Sherlock!!

They took my height and weight measurements, Im pleased to say I have lost just over a stone in the past three months.  Im aiming to try and lose a little more by the surgery date as the consultant says higher weight increases the risk of complications.

They then just asked A LOT of questions about my health and talked through my stay in hospital.

They also talked to me about having a high protein diet which apparently increases recovery rates and gave me these pre op drinks, it is a clear, lemon-flavoured, carbohydrate drink given as part of treatment before surgery.  “Undergoing surgery will put stress on the body. Research has shown having a carbohydrate drink reduces stress on the body. It has also been shown that it may reduce loss of muscle following surgery, which aids faster rehabilitation, and shortens hospital stay.”  Clever stuff!

My appointment took about an hour and a half and everyone was very nice, but had no idea on dates.

So I called my consultant’s secretary who let me know that a preliminary date of 30th April had been put in for me, they need to check all my pre op tests are ok and will be confirming it asap.

So I could have just 3 weeks left of being an ostomate!!!

Ill update as soon as there is any more news.

In the meantime, can I just take this time to say a very Happy Birthday to my most favourite bloke in the world, my awesome husband Timm.  Im sorry bubs that you had to spend your birthday morning in hospital with me!! We spent the rest of the day shopping, having lunch and then had a walk with the kids to our friends house for a gorgeous birthday tea.

Timm is just amazing, he takes everything to do with my illness and surgeries in his stride and just makes life better.  He is my absolute rock and I couldn’t live without him.

Happy Birthday Timm xxxx

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Woah! Eventful Friday night!

It’s all gone a bit dramatic here tonight, it started with a total bag blow out.

One minute I was cooking dinner with Timm, the next I heard a popping noise and felt a huge whoosh as the contents of my bag spectacularly emptied out down my legs and into the kitchen floor.

With an ‘oh shit’ from me, the husband realised what was happening and we both leapt into action. Well for me it was more of a legs together weird shuffle to the bathroom whilst Timm followed with my supplies and then he went to clean up the poonami in the kitchen.

I’m a lucky woman to have such an awesome husband to look after me. If I’m honest, I bloody hate that he has to deal with my shit (literally) I find it embarrassing and upsetting. But he deals with it all in a way that makes life so much easier and I find it easier to allow him to help me because he’s just so cool about it all.

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After Id showered and sorted out a new bag I rejoined Timm and we finished making dinner and all was well in the world…

Then after dinner we headed out to the supermarket, we’re trying out meal planning and so we wanted to shop together to get next weeks groceries. As I got in the car I started to have stomach ache, by the time we got to Morrisons I was in quite a lot of pain. It kind of felt like trapped wind so I tried to ignore it.

Then it got worse, I went to the loos and I thought I was going to pass out from the pain. It felt like my stomach was bursting open, I’ve not hurt that bad since I was in labour. I came out and was sweating, pale and thought I would faint from the pain.

A lady sat me on a bench and I called Timm who was walking round with the trolley to tell him I needed to go home.

He practically carried me to the car and drove me home whilst I was grunting, shouting and swearing. I honestly thought something had burst inside me. It was agony.

I got home and laid in bed and removed my bag. My stomach was really swollen and my hernia really pronounced. My stoma was large and dark coloured. I was crying in pain as Timm got me painkillers, I really thought I needed to go straight to hospital.

As I laid flat my stomach started to relax and then I felt a weird feeling and my hernia seemed to shrink back into my stomach. And the pain just went.

It was the weirdest thing, one moment I was rolling round in agony, the next I just had a slight ache.

We’re thinking it must be the hernia?! That it came out a lot and then as I relaxed and laid flat, it sank back in. Who knows?! I haven’t eaten anything different today than I’ve had before. I haven’t drank quite as much as usual but just got no idea.

I felt quite embarrassed at the drama I caused and how much grunting and swearing I did!!! I’ve had painkillers and going to stay in bed now and relax.

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Excuse the mess in my room! We are moving house in a couple of weeks and there are boxes everywhere!!!

I’ll speak to clinic/stoma nurse as soon as possible to see what they think it was. If any ostomates have any ideas I’d love to hear them! Perhaps I’m doing too much, I’m packing and cleaning our current home. I have no idea, I’m just glad I don’t feel like an alien is bursting through my stomach any more!!!

Thank you Timm for dealing with all my stoma dramas tonight, you are my hero and I couldn’t deal with all this without you.

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Thanks for reading

Sam xxx

Bride with an ileostomy bag

I have been married to my awesome husband Timm for ten years in May 2014, we married in Las Vegas with Elvis in gold lame, an amazing experience that was so fun and just right for us at the time.  We had two small kids and the pressures of planning a big white wedding got to us and so we packed up and eloped to have the most ridiculous, fantastic wedding we could think of!

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We had an absolute ball and it was just right for us, but it was marred with sadness that some people who really mattered to us couldn’t make it.  So for our tenth wedding anniversary we decided to renew our vows, that is happening this September in a ceremony and reception that we can invite all our nearest and dearest to.

I am currently in the midst of planning the whole shebang, I am spending more time than is healthy on pinterest and just trying to plan the perfect wedding for us now, ten years older and wiser.  Im looking at beautiful venues, Ive asked my (NINE) bridesmaids if they will be part of our day, we are looking at food and music, themes and Im spending a LOT of time reading Rock n Roll Bride.

But Im also feeling worried.  Im thinking about how this will be a day where Timm and I are centre of attention and crazy scared about being a bride with an ileostomy bag.  I brazen it out most of the time and if you read my blog you know Im not against showing my bag off, it helps me to think Im helping raise awareness when I talk about my experiences with a stoma but sometimes it hits me hard.

As I look through hundreds of beautiful wedding dresses I look at the fronts to see if my ileostomy bag would be on show, I think about where waist bands will sit and whether they will cut across my bag, I wonder whether my forced cheer will hold out on me wearing a big white dress.  I think about the horrific consequences of a bag leak in a wedding frock!!!

I see all this gorgeous, silky, lacy wedding underwear and laugh wryly wondering if they do anything to fit around a stoma, then I get scared that I won’t be a ‘proper’ bride whilst sporting an ileostomy under my gown.  I wailed at Timm this morning that Im going to be a bride that smells of poo… He laughed his head off and reminded me that I never smell of poo and gave me a cuddle.

Im finding it hard to put into words how I feel about being a bride with a bag, of course I know it doesn’t make a difference, but I can’t help feeling a bit sad that I won’t be a ‘perfect’ bride.  Id love to be able to take the stoma off for a day, to have one day where Im not thinking about medical things.  I want my bridal handbag to be filled with pretty things and perhaps a drop of dutch courage, not stoma adhesive and barrier creams.  I don’t want to have to worry that if I drink champagne that my bag will get gassy and Id rather my wedding night didn’t involve a big plastic bag stuck to my stomach!

I sometimes worry that Timm shouldn’t have to deal with all this, that he should  have a wife who doesn’t carry bodily waste around with her.  And I suppose those feelings are coming to a head whilst planning our renewal.  I DO know that all these things are in my head, that in reality Im a super lucky woman who has a husband who loves her.  I also know that our wedding renewal is about love.  Its a celebration of our relationship, our joy, our devotion to one another.  Its nothing to do with being perfect, anyone who has been together fifteen years knows their partner isn’t perfect, because we are all deliciously and uniquely flawed, its what makes us who we are.

Timm said to me this morning “I think you are beautiful at your very worst, at your best you have me in tears”

And thats why Im marrying him.  Again.

Love Sam xx

Make your What Ifs happen every day

Im revisiting some old posts from my old blog, updating them and reblogging – so don’t think you are going mad if you think you’ve seen some posts or photos before!!

My other life is running a business with my amazingly talented photographer husband Timm Cleasby.  In December we took a huge leap and moved into a 15th century mill and started The Picture Foundry – our photography studio and arts hub in South Yorkshire.  As you can imagine, this takes up just a little bit of my time!!

At The Picture Foundry we have a kick ass photography studio as well as gardens, woods and a stream that we are filling with awesome sets and play areas… tree houses, a stage, a ridiculously amazing chaise longue…. We also run Responsible Fishing from the mill – an arts group set up by Timm and our friend James.  They come up with the most fantastical ideas and then put them into place, there is the stone balancing workshops that go out to festivals all over the UK, there is Camp Cardboard, which involves taking a huge pile of cardboard boxes into schools and encouraging the children to transform the school hall into a massive cardboard den.  They currently are working on a frankly bizarre yet exciting idea of building a life size version of the childrens game, Mouse Trap…

The thinking behind our move was to have a better work/life balance and to initiate a creative hub.  Life is short and you never know what time you have here so we wanted to fulfil our dreams, to make the things we have talked about for years actually happen.  A saying often heard nowadays in our home is “whats the worst that can happen?”

We knew that for us, the worst that could happen is to have regrets.  I want to regret the things I have done, not the things I haven’t!  We didn’t want to get old and to look back and think ‘what if’ – so we make our what ifs happen every day.

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Its not easy, we have three children, a dog, two cats and five chickens.  We have to think about money and schools and children and we have panics that perhaps we should take an easier route.  But the majority of the time, we feel blessed.  We feel proud for taking a leap and lucky that we have each other.  We wake up every morning and think ‘FUCK ME!!! LOOK WHERE WE LIVE!!!”

Since my surgery it feels even more important to live each day to the maximum, to take risks, live your dreams and make choices that bring you closer to your goals.  Life is very short.  None of us know what time we have on this planet or when life will throw us a massive curveball that will change your life forever.  I knoooooowwwww I blab on about positivity but I truly believe that with the right attitude, a big lump of courage and a bit of luck we can achieve anything.

Love Sam xx

Happy Anniversary

15 years ago today I met my amazing husband Timm in the Leadmill when my friend told him ‘my mate fancies you’

15 years and 3 kids later and the rest is history. Timm you are my best friend, I love you more than ever. You make me so happy and I couldn’t imagine life without you. You are awesome!

I’m so glad to be Mrs Cleasby xxx

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Love Sam xx