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Letter to my children

Hey bambinos,

It’s momma here, I thought I would pen you a note as you are all old enough to spend your days with your noses stuck to a phone/ipad/laptop and I know you sneak a peek at So Bad Ass from time to time.

Firstly (and always), mannnnn I love you guys so much.  Like, my heart swells and twists and pumps a little harder when I think about you.  You are my three proudest achievements, nothing I can do in my life will ever surpass the pride I feel when I know that a little bit of me and a little bit of dad managed to make these three human beings that are as mind blowingly awesome as you.

People talk about how I have coped with the past few years, all the surgeries, the hospital stays and the life changing additions and subtractions and I think they forget that you guys have been through it all too.  My heart breaks when I think about how my illness has hurt you all.  I am truly sorry that this has happened to us all, if I could have hidden it from you, I would.  I can never give you back the past few years and all the time we have lost with me in bed, I can’t replace the time you have spent visiting me in hospital, the hours that slipped away as I rest and heal and sleep.

sam cleasby family parent mother blogger

But I can thank you for it.  Bambinos, you are the best.  Thank you, thank you, thank you.

Thank you for taking everything on board, for being accepting and loving and caring.

Thank you for asking hilariously awkward questions about my stoma and butt (never stop!)

Thank you for not being embarrassed of me (even when your friends saw a photo of me in my knickers on the internet)

Thank you for the endless cups of tea.

Thank you for the hugs.  Every one healed me a little faster.

Thank you for bringing your friends to see me in my sick bed at home and not being ashamed of me.

Thank you for giving up your free time to sit in bed with me watching terrible TV.

Thank you for making me laugh (even when it hurts my stitches) you three are the funniest human beings in the world.

Thank you for understanding.

Thank you for being you, you weird, bizarre, ridiculous, smart, funny, wonderful babies.

Thank you.  Thank you.  Thank you.

I wish none of this had happened and that we could just be a normal, happy family, but I can’t change it and I just have to hope that we can gain some positive things from it all.  I know we are closer as a family, I know that your relationships with your dad have deepened so much and when I see you all together, it makes me smile.

I hope this situation has made you more open minded and accepting, I hope it has taught you patience and care and a knowledge to not judge a book by it’s cover.  I hope you are tougher for coming through the past few years and that you will learn to be more resilient, stronger and always try to find the silver lining in any situation.  (Even if that silver lining is a terrible joke, a meme about llamas or a memory of a good time).

It means so much to me that my bag doesn’t frighten or upset you, I know it was a shock in the early days, but I am so glad that you fully accept my ileostomy bag for what it is, a life saver.  After surgery, when you were all a little scared to come to close incase you hurt me, it shook me, I worried you would never want to hug me again, now I love the fact that you barely think about my bag and aren’t afraid to touch it, talk about it and even warm your hands on a very cold nighttime walk on it!! (Hahaha)

I want you to know that I am so proud of you all and the way that you have dealt with everything.  I know it was really scary that I had to go in to hospital again and it wasn’t nice to visit me and see all those tubes and wires everywhere, I know it was frightening when I wasn’t really with it because of all the medication.  You guys were awesome though, you made me laugh when you wore the sick bowls as hats and made me wear one too.  You brought me joy in those rubbish days when all I wanted was to be at home and every time I saw your faces, it reminded me to get strong quickly so I could get home to you all.

children and chronic illness ibd surgery

My bambinos, I know the past couple of months have been tough as hell.  Between my surgery and recovery, our bereavement, mine and dad’s work, your school life and the most stressful house move known to man (we’re nearly there, I promise!!!), it has been really hard and I know you have all been freaking out.  It makes me feel guilty to know you guys are stressed, I feel it is my job as a mum to protect you from stress, but unfortunately this is life and it’s a learning process for you to know that bad stuff happens, yup, even to good people.  But that’s ok.

You don’t appreciate the great times without lulls of crapness, we have had more than our fair share of crap times, I know.  But we also have something really special, we have us.  Our family is awesome, me, dad and you three flipping rock, we are just the best and we have to celebrate that.

Let’s hope that after a bad start to the year, 2016 will be beautiful.  I’m looking forward to our new home, to working in the allotment with you all, to parties and big dinners with the people we love, to your aunty, uncle and cousin visiting us from Australia, to a weekend in Manchester watching the Stone Roses, to visits to London, to galleries and exhibitions, walks in the park and cuddles on the sofa, to visits from nan and a house full of your friends, to hot tubs in the summer and ridiculous gatherings of our silly friends and especially to our family road trip to America!!

sam cleasby mum parent blogger

The thing I look forward to the most is seeing you lot grow and thrive, you are all getting so grown up and it is scary to think that you aren’t babies any more.  Two of you are teens and one will start secondary school this year!! You are all dealing with your own struggles, and bambinos, I know it is SO HARD! You are filled with hormones and emotion and are learning who you are as people, you are becoming the best young men and women that I have ever met.  Dad and I may be tough on you, we nag about work ethics and housework, manners and respect, it is only because we love you more than anything and we can see how close that horizon of adulthood is to you.  We can see it nearing day by day that in no time at all you will be leaving school, going to uni, travelling the world and leaving home.

But let’s not rush it eh? Let’s enjoy our time together because after all the s**t (yes, mum swore) we have been through, we deserve something good.

I love you bambinos

 

Mum x

Scope’s #EndTheAwkward Romance Classics

It’s almost Valentine’s Day and the fabulous Scope are all about the romance.  As part of their End The Awkward campaign, they’ve kicked off the most romantic time of the year by releasing swoonsome recreations of iconic Mills & Boon book covers – starring disabled people.

They created Scope Romance Classics in response to their new polling that shows just 6% of people in the UK have been on a date with a disabled person they met through an online dating site or app like Tinder. This is because too often people don’t see disabled people in romantic situations. So they made them the romantic leads for Valentine’s Day.

I love it! I love the whole End The Awkward campaign that aims to normalise disability by showing people with disabilities in everyday situations in the media.  On Valentine’s Day, it is a great time to think about everyone in society, not just able bodied.  How often do you see people with disability in romantic situations in the media?
mills and boon scope

 

 

I was really proud to be part of Scope’s A-Z of Sex and Disability last year which aimed to share the experiences of people, educate and support those struggling with their own sexuality due to illness, accident or disability.

mills and boon scope

 

For more information on Scope and End The Awkward, head over to their website now.

 

I have this friend…

I have this friend. Her name is Fenn. (It’s not, she’s known by all manner of names, but to me she is Fenn.)

We ‘met’ online over 10 years ago on a website called The Bad Mothers Club.  It was pre Facebook, pre Twitter, pre Facetiming, skyping and instagram.  A vine was still something that grapes grew on to make delicious wine. Forums were the thing and my family thought I was opening myself up to being murdered by a stranger.

Fenn was one of the big girls on the forum, thoroughly intimidating but in a cool big sister way, not a mean girls way. (She never told me to wear pink on Tuesdays).  So we chatted, we found ourselves on the same threads and we talked shit, made terrible jokes and mainly were honest, struggling mums who could tell it like it is.  I met some bloody wonderful people on that forum, many of whom I still speak to today, all in the premise of being bad mums.  We weren’t and we aren’t.  But we found peace in having the ability to share our parenting woes with like-minded individuals.

sam cleasby and violet fenn bloggers

I always liked Fenn, we clicked and I knew I would make her mine and call her squishy.  Months of forum chat turned into emails and private messages where we would talk about anything and everything.  It was a really isolating time for me.  I had three kids under 5 and a husband who worked away, Timm had just started working for the Arctic Monkeys and was touring for 9 months a year and I was home alone with the kids.  I had been diagnosed with Ulcerative Colitis 2 years before and during flare ups, I would barely leave home or speak to other human beings.

Our first phone call was nerve wracking, the premise of it was that she was going to help talk me through understanding Paypal.  Don’t mock.  It was all very new!!! An hour later after her banging her head against the wall in frustration of speaking to a tech-phobic moron, we were laughing and chatting as though we had known each other forever.
sam cleasby and violet fenn bloggers

We first met in person when I took the train to her home town to stay with her.  This goes against all internet safety warnings, but after a year or so of chatting on the phone we made the leap.  I remember sitting on the train and thinking ‘fuck, what if we hate each other??, what if we have nothing to say?’.  I needn’t have worried, we hugged, went back to hers, drank rosè and talked for hours.

sam cleasby and violet fenn bloggers

Our friendship over the past ten years has seen us through raising 5 kids, relationships breaking down, new loves, illness, surgeries, heartbreak, new loves, new careers, six years working together at Leeds festival, our lowest lows and our highest highs.  We live 100 miles apart and don’t get to see each other nearly as much as we both wished but this girl is my love.

I don’t think I would be here writing this blog if it wasn’t for Fenn and her ever helpful tech and social media advise.  She is creative, artistic and ever brilliant and you need to go take a look at her work at Sex, Death, Rock n Roll (yes, that IS the best blog name ever).
sam cleasby and violet fenn bloggers

Today is her birthday and I think you should all go over to like her Facebook page and wish her a happy birthday for she is bloody wonderful.

Friendship comes in many different ways, often when we least expect it.  For years, people would say she was my “internet friend” as if that meant she weren’t real, as if the fact we met online negated from any real life connection.  We live in a time where we can connect with other people from all over the world in ways never experienced before, that is a wonderful thing.  Of course we need to keep ourselves safe, but the internet opens life up and gives you the ability to make friends that can last a lifetime.

Fenn is my true friend.  She makes me happy, she talks me through my sadness, she is my shoulder to cry on, my partner in crime and my support.  I love her very much and truly hope that I have made her cry as she reads this! 😛

A few years ago, I trained as a masseuse and got the opportunity to go to Leeds festival and be their backstage masseuse for artists.  As I had a massive panic attack about it, I knew there was one person to talk me down and be by my side.  Together we did 6 years, hanging out with rock stars, giving eye liner to American punk boys, feeding lolly pops and cider to indie bands and generally having a fucking amazing time.

sam cleasby and violet fenn bloggers

The last time we did that was in 2013.  I was ill.  I had been ill for months and knew I wasn’t well enough to go but didn’t want to let anyone down.  When we arrived there was confusion, problems with work space, a back stage manager who was trying to fuck us over (don’t ask!!) and a lot of stress.  I managed the first night and then between us, we had had enough and went home.  The next day I was admitted to hospital and I didn’t leave for two and a half weeks.  When I left, I no longer had my colon.

My wonderful Fenn, I want to thank you for those 6 years.  We had a blast didn’t we?!  Josh Homme calling you ma’am, Jarvis Cocker, the Axl Rose debacle, the Beth Ditto debacle, nearly taking out Dave Grohl with a swedish wooden throwing game, you getting me to meet Pete Doherty, hanging out on buggies, sleeping behind the main stage with a stage light for warmth, telling Chung “celeb gossip” about Gok Wan to realise it all came from Pop Bitch, the lovely coffee, the dining with stars, the case of the stolen guitar that we solved like punk Miss Marples, Jack Black, the year of the weird yogi and his life in a cave, the shaming of those who thought we should know who they were, the laughs, the tears and the cider.  Always the cider.

I should probably mention now our one and only argument.  It involved drunkenness, tents, cameras and a bottle being thrown at my head… It was magnificent!

 

sam cleasby and violet fenn bloggers

You are a gem, you know.  You deal with so much and you are an inspiration to so many.  Though times are tough and you have a lot on your plate, you are always there for me and I am truly grateful.  You know what else I am grateful for?  That fella of yours.  Thank you lovely boy for making my girl the happiest I have ever seen her.  It is a real joy to see you together.

We keep promising to do more work together, then life, kids, illness, stress gets in the way.  I don’t stress about it though, as I know we are going to do something amazing together at some point.  We are both so fucking awesome that it would be a travesty for it NOT to happen!

mighty boosh fancy dress crack fox

From the humble beginnings of a tiny corner of the internet to where we are now, I am so glad you are part of my life.  I hope you have a marvellous birthday, I only wish I were closer so I could come and clink a glass with you.  We will be friends to the very bitter end, when we are old punk biddies in amazing costumes with bright pink hair and kick ass shoes.

And that is why, my love, when I renewed my wedding vows to my Timm last year after the worst times of our lives, there was only ever one person who I could have had to perform the ceremony.  Thank you for being such an integral part of such an important day.  I love you.

 

Happy Birthday beautiful xxx

 

Please do go check out my wonderful Fenn…

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I’m not sorry

My name is Sam Cleasby and I am not sorry.

I apologise constantly, I say sorry to people who bump into me in the street, I say “sorry to bother you” to people who serve me in shops, I apologise to the postman if I don’t get to the door immediately.  If I am offended by someones behaviour, I end up apologising for being over sensitive.  I even said sorry to the dog this morning.

I spend a large amount of my days saying sorry for things that I have no need to apologise for and that needs to stop.  I think it is a throwback to a Catholic upbringing filled with guilt or perhaps that I hate for people to dislike me, though I am learning to deal with it, I don’t like conflict, I have a fear of making others angry.

 

I grew up feeling quite insecure, I worried constantly about what others thought of me, worried that I wasn’t enough and maybe I always felt I have to apologise for my mere existence. So I say sorry.  A lot.

apologising too much

I hate that I apologise so much but it has become a kind of verbal tic, it comes out of my mouth before I even realise it.  It’s funny as I am a reasonably confident person yet the part of me that doesn’t feel enough comes sneaking out all too often.  And it’s not just me, according to a YouGov study a third of British people feel they apologise too much.

Saying sorry when you are in the wrong is the right thing to do and I am all about good manners but when you over apologise, it can give others the impression that you are not confident, are weak and easy to walk over.  Beverly Engel, a psychotherapist and the author of The Power of the Apology talks about how over-apologising can send a message that you’re ineffectual and have low self-esteem, she says “It can give a certain kind of person permission to treat you poorly, or even abuse you.”

 

I strongly believe that when you are in the wrong, an acceptance of your fault and a true, heartfelt apology goes a long, long way.  I have a real problem with people who don’t accept responsibility in their lives, those who think the world owes them a favour, I grew up with people like that, those whose favourite words are “it’s alright for you”.  People who no matter what, believe they are in the right.  And those people suck.  This isn’t about never saying sorry, just only saying sorry when we really are!

I am making a stand for myself and I am going to stop being such a walk over, I have always let things slide or apologised even when I am not in the wrong and I have had enough.  I am done with the people who treat me badly, done with saying sorry when I have done nothing wrong.  The next time someone bumps into me in the street I will not say sorry.  The next time someone upsets me, I won’t apologise for my feelings.

I have been through so much in the past few years with my health that I realise I need to start to care more about myself.  I need to put me first a lot more, I need to cut those who have hurt me, who don’t care about me, out of my life and I need to not say sorry for just being myself.  What my illness has taught me is that life is short, you don’t know how long you have on this Earth and so we need to live every moment to the fullest.  That means celebrating your time with people who bring love, joy and happiness into your life and not apologising for your existence.

My name is Sam Cleasby and I am not sorry.

Distance

Apologies for not being about much over the past few weeks, as much as i adore blogging and writing for So Bad Ass, as a mum of three I have to ensure bills can get paid and and so I have been super busy with other work.  It has been pretty lovely work though I have to say! I have been working as an artist for arts group Responsible Fishing UK running their creative workshops at Haven sites all over the UK, the project is called Camp Cardboard and entails hundreds of cardboard boxes and working with kids to transform huge spaces into giant dens/castles/boats/zoos/FBI headquarters/shops/homes/prisons, basically anything the children can imagine!  It has been brilliant fun but has meant quite a bit of time away from home, Timm and the kids.

My husband Timm is a director for Sheffield music festival Tramlines, which means that his summer has been jam packed with preparation and running of the event.  These things mean that our kids have been super busy and passed between the two of us as we attempted to resolve all childcare over the summer holidays.  We are ever so lucky that all our jobs are freelance, versatile and child friendly and on most occasions they can come along with one of us.  I am ever grateful to my mum who picks up the slack when we can’t make it work.

sam cleasby mum parent blogger

And so I suppose today’s post is about distance, both a physical distance and an emotional one.  Timm and I both have what we laughingly call Portfolio Careers, this basically means we are both freelance and work our butts off at any job that comes in! Timm is a photographer, he runs Responsible Fishing arts group, he is both director and main stage organiser at Tramlines and he teaches at a university for their Music Industry course.  I write for publications and websites, work for RF, help run the photography business, do public speaking and I am writing a book!  This makes for crazy scheduling but it does mean that we both work from home and both have time with our children and eachother.  Honestly, we would both like it to calm down some, the manic diary planning and time away from each other is hard going and we would both like a little more time.

I am not complaining.  Two years ago when I had my first surgery I couldn’t imagine how life could be something good, I was so low, so physically and emotionally broken.  I felt like I was in a black hole.  And so for now to have the physical ability to be working and traveling and doing things that I love, it is a real blessing.

love letter to yourself ileostomy jpouch ibd self happiness

The events of my life have made me a pretty tough cookie, yet I realise that my emotional strength relies very much on a connection with my husband.  I can get through ANYTHING as long as I have him with me in my heart.  I know this sounds so corny and feel free to make vomiting noises whilst you read, but after everything we have been through, our relationship has just solidified, our bond is so firm now and the connection between us is better than ever before.

So when we have weeks on end where one of us is working away, when the free days are spent heaping time and love on the kids as we deal with the working parent guilt, when we both have so much on our plates, it is so easy to feel distant and alone.  We have had lots of day to day stresses of late, cars breaking down magnificently, bills to be paid, plans to be laid and so time has been spent on all those rubbish grown up things.  The physical distance is one thing, but we have both had an emotional distance too as we both just try and wade through all our work load.

Through writing my book, I am churning up lots of feelings and emotions about my past, I feel quite fragile right now as all these events from my past come floating up to the surface and I have to deal with them all over again and this is really adding to my anxiety levels.  I am so chuffed to be writing the book, but I had not planned at all for this tsunami of feelings that it would bring with it!

Last week we finally got time to sit down and have a proper chat, we both talked about how little we have seen one another and how we felt we hadn’t connected properly for weeks. (Not a euphemism!!) Isn’t it amazing how a good talk can make everything feel a million times better?  The darkness and anxiety I was going through lifted immediately when I was with my boy, my shoulders raised and my head cleared when we had the time to discuss all that was going on.  Life just feels better.

rock n roll wedding

It is so easy to get caught up in life.  In all that adult, grown up crap that none of us really want to be dealing with but we just have to.  It is so easy to get into a rut, to go day in, day out in a monotonous grey drabness.  It is so easy to get so deep into your work that you forget to look up and see the colours around you.  So this week, take a moment, look around you at the people who matter.  Go for a walk with your kids, have a nice meal with your partner, go out with your friends.  Do something to reconnect with the most important people in your life, do something to close the distance that the boring stuff causes.

This week, go do something beautiful with someone wonderful.

 

 

Sam xxx

 

 

To the father who left,

When you and mum split up, I was just a baby and don’t actually remember you ever living at home with us yet your presence, or lack of it, has still managed to affect my life greatly and I want you to understand how your actions have ripples throughout the family you walked away from.

For a girl to grow up without a father who cares, or even a father figure, it is tough.  No matter how strong I think I am, there is always a part of me who is a frightened and sad little girl who just wishes her dad loved her.

There is a photograph of me as a small child, I am sat in the bay window of my childhood home with the sun shining through, dressed in a cute 80’s outfit and sporting a dodgy fringe (thanks mum!), it is a lovely image yet one that is tainted with bad memories.  For when I look at that photo, the memories of sitting and waiting for you to turn up to visit come flooding back.  With my bag packed and hair brushed, I would sit and wait for you to arrive, looking up and down our quiet street, listening out for the knock on the door, but so many times that knock didn’t come.  You let me down so many times that I lost faith in you.

Then there were all the times that I was brought to your home by my eldest sister, taking on, as she has all her life, the responsibilities that did not belong to her.  She would take me to visit your new home, your new wife, your new daughters.  Everything in your life was shiny and new, not like the tainted old daughters you left behind.  Your second wife was very kind, she had to be to care for me during those visits, the times that I was supposed to be spending time with you was usually spent with her.  And years later as I stood by her coffin alongside the half sisters I hadn’t seen since childhood, I would tell her a silent thank you for the care she gave to me.  As yet again, the women in my life picked up after your failures.

When I was a kid, this mean girl in my class told me that I must have been so ugly and bad as a baby to make my daddy run away.

Doesn’t that sound like a throwaway nasty comment? A spiteful child’s bullying words.

Yet on those dark days when the demon voice inside starts to tell me I am not enough, it is those words I still hear.  As a little girl I believed it must be my fault, perhaps if I were better, quieter, whiter, more like your new daughters, maybe then you would love me?

Don’t get me wrong, I am not the sort of person to allow my past to ruin my future.  I am a strong and confident woman who is happy in life, but these things from childhood do run deep and I still find myself wanting to please those around me in the hope they will love me truly and not leave.

I am a strong woman now despite you, not because of you.  You don’t get to take credit for me.  And I see you doing that.  Telling your Facebook friends, your born-again church about my accomplishments and it angers me because you don’t get to warm in my glow.  You lost that right a long time ago.

You soon left another family, leaving more children in your wake and went onto wife number three.  She didn’t want us around and so you disappeared.  The sporadic contact became nonexistent and I was left bewildered and frightened, wondering what I had done, believing I must be a terrible person for my father to simply go away.

affects on girls without dads

I understand that life is difficult.  Relationships change, people face addiction, communication can be tough.  But you made choices based on those things that meant I was the one to suffer.  I have never known how it feels for a father, or father figure, to love me.  Never had the opportunity to be a daddy’s little girl, to have a dad to guide me, worry about me, care about me.  I find it hard to trust that men aren’t going to treat me badly, I wonder whether my husband will one day have had enough and leave me.  I have a wonderful husband who loves me and our children, who supports and cares for me, yet that demon crops up from time to time to whisper in my ear that if my own father couldn’t love me, how on earth will my husband?

A few years ago, you reappeared.  Facebook has a lot to answer for and you got in touch, wanting to reignite a relationship whose embers had faded 20 odd years previously.  I decided to give it a go.  Not for you, but for me.  Because tragically, despite everything, I desperately want to be loved.  I want to join in with my friends who talk about their dads who are their heroes, their dads who they go shopping with, who come for dinner, who they holiday with.  I wish I had tales of my dad coming to my rescue, of feeling protected and safe when in the arms of dad, of being someone’s special child, a daddy’s little girl.

I tried.  I swear I did.  I told you about all the pain you had caused me, of how your decisions had broken my heart, I opened myself up and poured out the years of rage, hurt and disappointment.  I allowed you into my life so I could show you the emotional battering I had taken because of you.  I told how sorry I felt for you, that you had gone through your life abandoning children at the wayside and now in your senior years you were alone.  I told you about my beautiful, amazing, intelligent and wonderful children who you had missed out on and that the title of grandfather was one that was earned not given.

You told me “Jesus forgave so that you can forgive”

That was the moment that I realised that you hadn’t changed.  You weren’t taking responsibility for your failings, you had just found a way to absolve yourself of your sins and expected us all to rejoice.

I am not giving you that.  I don’t forgive you.

The opportunity to tell you all the ways you had fucked up gave me a release, I thought perhaps I could find a way to have some relationship with you, perhaps not as father and daughter but maybe as friends.  But I soon realised that you don’t have the credentials to be my friend.  You aren’t worthy of me. My friends, the people I have in my life are awesome, they are full of love, respect and loyalty.  They are interesting, funny, caring, special and they bring joy and laughter to my life.

You hide behind people and things who allow you to not take responsibility for yourself.  Children, women, alcohol, a higher being.  But at some point you need to accept that you have wasted your life and the opportunity to have me as a daughter.

Because I am fucking awesome.

sam cleasby parenting blogger fathers self esteem

In the end, I walked away not through hate, not through pain, not through fear.  I walked away because I couldn’t find the passion in me to hate you or love you.  I had no feelings, a numbness, a malaise, a disinterest.  There was nothing about you that was intriguing or interesting, I didn’t want you as a father or as a friend.

This is me drawing a line in the sand, I do so without the shame or embarrassment that I usually feel if I think I am letting someone down.  I am always trying to make people happy, yet teaming that desire with a hard shell.  This interesting mix of wanting to please yet feeling I have to be defensive and ready for disappointment.

I am giving myself permission to move on, to not look back and to be happy as a fatherless woman.

 

Sam x

 

Going Dark

I’m not feeling too great at the minute.  Still.  My joints hurt so much, my wrists, hands, ankles, shoulders, hips… the pain is like a gnawing ache, and it moves around, floats from place to place in my body.  Isn’t that odd?

The tiredness is terrible.  I can’t wake in the mornings and then fall asleep all day, it’s the fatigue that is so hard to deal with.  The exhaustion makes me feel useless and like a sick person, it sucks out all energy, not just physically but mentally and emotionally.

I saw my GP this week and had some blood tests.  He suggested it could be a flare up of Ulcerative Colitis.  Isn’t that a joke! I thought removing my colon got rid of this bullshit but it turns out it’s all these ‘extra intestinal manifestations’ (I know this sounds like a ghostly poo but it means when the disease affects other parts of the body).

My eyes are so dry that I can’t open them in the mornings and they itch all day, my mouth is constantly dry no matter how much I drink.  My skin is dry, my legs are white with the skin coming away.

I’m going back next week for the results, if my inflammation markers are up then I potentially will have to have a course of steroids and go back under the gastro team at the hospital.  He also tested for Rheumatoid Arthritis to see if that is what is hurting my joints and so I just need to wait and see what he says on Wednesday.

Im not a great person to be around right now.  I don’t want to talk to people, I don’t want to go out.  I make myself do the things I have to do, but really want to just be hiding in the duvet cocoon.  The problem is because I talk so much normally (read: I’m a gobby cow), that when I feel hurt and sad, I go quiet and this worries those closest to me.  There’s a phrase on that TV series 24 when an agent turns off communications usually for their own safety or for the safety of those around them, it’s called ‘going dark’.

Going Dark: When an individual disappears or suddenly become unavailable or out of reach for an undefined period of time, generally for security reasons.

This describes me right now.  The only place I can deal with sharing at the moment is on my blog.  I know this can seem difficult for my husband and friends but it is all I have at the minute.

I feel so sad.  I thought all these surgeries would make me feel better (and I have to keep reminding myself that I AM better than I was) but it is hard to still be a sick person.  It’s silly because I always knew there was no cure for Ulcerative Colitis and that it is a life long chronic illness, an auto-immune disease that means my body is fighting itself.  But after everything I have been through, I just want a break.  I don’t want to be fucking ill anymore. I bloody hate being a poorly person.  I despise the burden I become to those around me.  I can’t stand that my lovely boy, the best person in my life, my husband Timm has to, yet again, bear the weight of my illness.

I’m sorry this post is so miserable.  I sometimes feel that I made a rod for my own back in being so god damned positive all the time!!! I feel I am letting people down when I feel sad.  But in a way, it helps.  I’m reading back all that advise that I give to others and remembering that I need to take it myself.

And so with that, I am going to try and treat myself a little better, sit in the sun, paint my nails, read a book.  Do the tiny things that I can manage that will ease my mind and warm my soul.

Thanks for reading

 

Sam x

 

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

 

 

 

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