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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.

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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

 

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

My hero

My hero isn’t someone wearing a cape and fighting crime.

It isn’t the person with the biggest muscles taking down the ‘bad guys’

It isn’t someone who is fighting fires or saving lives.

My hero sits and watches me sleep even though he knows he doesn’t have long to visit me in hospital as he has to rush back for the school run.

My hero tells me I’m beautiful when I’m in a hospital bed and haven’t brushed my hair for days.

My heroes eyes shine with tears because sometimes it’s all a little much for him.

My hero sees my stoma and in it sees a future healthier me and it makes him happy.

My hero cares not about the blood, shit and tears when he kisses me and tells me he loves me.

My hero takes home my bags of washing as he knows I couldn’t deal with anyone else seeing the state I have been in.

My hero is running our business, caring for our children, running the house, pets and everything…

My hero doesn’t treat me like I’m sick. He takes the piss out of me, he makes me laugh and he says inappropriate comments to make me giggle.

My hero supports me in this blog. He knows how important it is for me to talk about this and helps me do it.

When I say I’m worried ill be embarrassed in public with some of the noises my stoma makes, my husband tells me he will lift his leg and take the blame!

My hero makes sure that when I’m too hurt and not strong enough to stand up for myself, that my voice is heard and my corner is stood.

My hero will spend the next few weeks nursing me back to strength. He does it with love, kindness and a sense of humour.

My hero is Timm

Xxx

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