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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?

sam cleasby ibd blogger sheffield chronic illness

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.

sam and timm cleasby sheffield

 

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

The wedding dress saga

In September this year, my husband Timm and I are renewing our wedding vows after being married for ten years and together for sixteen years! We married in May 2004 in Las Vegas, we had originally planned a big white wedding at home, but the stress of everyone else trying to dictate our day just got too much and so we eloped and were married by the king…

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It was such a fantastic day, we married at the Viva Las Vegas wedding chapel, I wore a red and white floral dress and in the evening we ate at the Stratosphere in their revolving restaurant . It was pretty much perfect.

We decided to renew our vows a couple of years ago. Partly because we have just changed so much in ten years, partly because we wanted to share it all with our friends and family and partly because we wanted a big party! Then after the past year of illness, surgery and recovery, our wedding renewal has become such a big thing, it’s the thing that’s kept me going through bad times and given me something to look forward to.

The first thing I thought about was my wedding dress. As I didn’t wear one the first time round I was adamant that this time I wanted a ‘proper’ gown. When I looked at dresses I realised that the ones I liked were around £1,000 and I knew I couldn’t spend that much money. After not working for our business for long periods of time whilst recovering I just can’t warrant spending that much money on a dress I’ll wear once. We have three kids and a business to run, it just doesn’t seem right.

Then I saw dresses from China on eBay at a massive reduction. The dress I fell in love with was just £90. Now I always think if something seems too good to be true then it probably is. But asking around a lot of people said they knew people who’d had dresses from China and they were fantastic. So I risked it and sent my measurements along with £90 through PayPal to an eBay seller.

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I received an email saying they’d got my measurements and payment and the my dress would be with me by 26th July. Shortly after, I got an email from eBay saying the item had been removed but if I had paid then I would still receive the dress. I was panicked but they assured me I would still get it.

I then saw that the seller had been removed!!! Again eBay said that the item should still come and nothing could be done till after the date of delivery had passed. So I crossed my fingers and toes and waited…

My dress hasn’t come.

I’m now five weeks away from the wedding and have no dress. I cried a lot yesterday, that may seem daft as I know it’s only a dress but I’d set my hopes on it and had these dreams of walking down the aisle in it. The last year has been so hard, two major surgeries and a body full of scars mean that though I fight hard to remain positive, sometimes my body makes me sad. It looks so war beaten, so battered and forlorn.

I thought in wearing this dress, that for the first time in a long time I would feel really beautiful. I thought people will look at me and see a bride, not a patient. They won’t think about scars and ileostomy bags, no one will be thinking ‘there goes the lady who talks about poop’. I know this is silly. A dress is a dress. But I had pinned all these hopes and dreams onto this dress and now it’s not here.

I wanted something special for Timm. He has been my carer for so long and in the last year he has seen me at rock bottom, he’s watched me as a broken woman, full of scars and wounds. He’s had to wash me and carry me, he has cleaned me when I’ve had accidents and literally supported me on the toilet when I was too weak. I wanted him to see me and for none of that to be in his mind. Does this sound silly? I wanted him to be blown away when he saw me, for me to look nothing like the sad crying woman he had to push in a wheelchair. I wanted to look like a bride.

I now don’t have enough time to get a dress from a bridal shop even if I had the money. I’m limited by budget and time to high street off the peg dresses or second hand. I’m sure I’ll find something but I can’t help but feel really sad. My friends have rallied and today we are off shopping to see what I can find.

I need to remember that this wedding is about how much Timm and I love each other. A dress won’t change that and after all we have been through, this is but a tiny blip. Our wedding will be a fantastic day because we will be there together.

I’ll remember that and repeat it to myself all day.

Love Sam x

*UPDATE*

I opened a resolution case with eBay, after 8 days the seller hadn’t responded so I escalated the case.

I just received an email from eBay saying they have closed the case and I won’t be getting a refund.

WTF? I’m gutted.

This is the confirmation I got from the seller…

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Then I got this from eBay…

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This is the one I got today, no explanation!!!

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If anyone can help or advise I’d be very grateful 😥

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.

subtotal colectomy end ileostomy surgery ibd ulcerative colitis sheffield sam cleasby

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

 

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