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“Oh, I don’t know how you cope!” (sad face)

I get this from time to time, the sad face, head tilted to one side, sometimes there are actually tears in the eyes.  The look of full on pity, perhaps a hint of ‘thank fuck it’s not me’ mixed with horror. 

“Ohhhh, I do t know how you cope!” 

I cope because I have no other choice.  I actually hate the word ‘cope’. It’s nonsense isn’t it?! Coping simply means getting through each day, each hour, each minute.  There’s no opt out in life (well, there is but let’s not go there), you can’t choose to not be ill one day, you can’t pop off your stoma and reattach your arsehole.  So asking me how I cope sometimes feels like you’re asking how I am still alive.  How I’ve chosen to live even with this disability. 

Perhaps I’m being over sensitive, but sometimes I can’t fucking stand the sad looks I get, the pity, the tilted headed frown.  

When I talk on here, in public, on social media, it’s not because I want your sympathy. I just want you to understand a little more. I don’t want to feel like you are appalled by the realities of my illness, I just want you to know what they are. 

I had a big leak recently and someone saw what had happened and the aftermath. They said with utter horror and sadness “ohhhh Sam, it’s just awful!!! I don’t know how you can live with this! How do you cope?! I couldn’t do this!”

I don’t think they meant to be hurtful, I don’t think they realised that their words hurt me far more than the blockage that had caused my bag to block up and push away from my skin.  


Perhaps I’m being unfair in expecting understanding without sympathy, care without pity.  After all it’s hard enough to understand my own feelings let alone expect others to know how I need them to react. 

Just remember for the future though that I really don’t want you to feel sorry for me.  We can talk about it, we can say that it’s shit (with every pun intended!), we can discuss how it’s sometimes really, really fucking hard to have a chronic illness and a disability. 

Take my lead, if I’m crying then please care for me and give me a hug. But if I’m just dealing with my usual day to day life, be aware that your pity can make me feel like I’m a second class citizen, it makes me question your thoughts on me and my life.  Your tilted head sad face may be well meaning but feels patronising as hell. 

✌️ & ❤️ 

Sam XX 

When you can’t breathe 

Sorry I’m not posting as much as usual right now. The thing is, I am really struggling. 
Sometimes, I can’t breathe. The tide of panic gets too high and fills my lungs. Sometimes, I feel numb. I can’t connect with people around me. Sometimes, it’s all too much. I want to hide from the world. 
Sometimes, I feel like an actress. I’m playing the role of human woman and making my actor face smile and speak. Inside I’m just watching. 
Watching my bad acting. Recognising when I spoke too loud, acted too jovial. I see the fakeness in my smiles and hear the insincerity in my laughter. 
Being with the kids helps, it makes me pull myself together and try really hard to be me. I don’t want to give them yet another thing to worry about me and so I need to just be ok, be me, be mum. 
I’m a week into meds, and to be honest I’m not feeling any better. If anything, I feel worse. I sway between manic anxiety and numbness and the guilt levels of feeling like this are sky high. 
I’m not sure any of this is making much sense, but I thought that writing it all down might help. I wish I were better at opening up to people, but I find it so difficult.  
It has shocked me to feel like this, after so many years of poor health and surgeries, I am so annoyed that now I am struggling emotionally! It’s really pissed me off, I want to be well. And healthy. And happy. So why am I screwing this up? 
Usually, I can talk sense to myself, I can assess my thoughts and feelings and reason with myself till I feel ok. I give myself therapy and thrash it out till I feel better. But this time, I can’t get to the root of it, I don’t know why I feel like this. So I’m not sure how to make myself feel better? 
What I do know, is that I should share this, that it’s ok to feel like this, I shouldn’t be ashamed. And nor should you. Thank you for all your messages, those telling me your stories of mental health and those thanking me for starting the conversation. As with the surgeries, if me talking about this can help, then it gives it reason and purpose. 
I know this is a depressing post. If you came here today for spirit lifting words or inspiration, then I apologise. I don’t have them in me today. 
Because I just can’t breathe. 

Sam xx 

Chronic Illness and mental health

I am very rarely lost for words, this blog is a stream of my internal thoughts and so I usually find it easy to empty my brain onto the page, but today I am struggling.  I am struggling because I find it really difficult to write about my own mental health.  I can share a million photos of me in my undies with my ostomy bag on show, yet when it comes to the health of inside my brain, it is tough.

I wrote recently about making the leap and asking for help and the response I got from you guys was overwhelming, so much love and support and people sharing their own mental health experiences, it made me realise that it is important to share these things along with the physical side of chronic illness.

The truth is that I am really struggling.  After 12 years of living with IBD and 4 surgeries in the past 2 1/2 years, my life has changed dramatically.  The past 3 years, things have moved quickly, surgery after surgery, change after change.  Each surgery, I thought would be my last but then problems arise and I find myself back under the knife.  I feel I haven’t had time to deal with these things, but just had to react to each event.  I think I went into survival mode.

Now, after my last surgery in January, I have 2 big hernias and know that the only treatment to get rid of them is more surgery and it has frazzled my brain.  It is the straw that broke the bad ass’s back and has crumpled me to the ground.

I went to see my GP last week to talk about it, I wound myself up all morning and was a shaking mess by the time I got there, I couldn’t breathe and felt like I would puke.  The idea of telling a stranger just how messed up the inside of my head feels right now was almost too much to bear but I did.  And she was wonderful.

She listened, questioned and encouraged.  We talked about just how huge the changes in my life had been and that it was understandable that I was having a bit of trouble in my head catching up with my body, we talked about PTSD (Post Traumatic Stress Disorder) and how the brain reacts to traumatic events.  How people with chronic illness often have issues with mental health and how society doesn’t always think about healing the mind as well as the body.

chronic illness and mental health

We talked about my feelings of having another surgery and she suggested that we try and make me feel better in my self before making a decision on hernia surgery.  Her thinking being that if I can feel better in my head, that I am better placed to decide whether to have surgery immediately or to put it off for a while.

I am on the list to see a psychotherapist, but there is a 10-12 week wait and so we decided to try some medication to help calm my anxieties and lift my mood.  I hate having to take any medication to make me ‘normal’, 12 years of taking meds every day to stop you shitting yourself does that to a person.  But I had to think seriously about what is best for me right now.  And this is it.

I don’t feel depressed.  I don’t think I do.  When I speak to friends with depression, they talk of a lack of hope, of darkness and feeling stuck in a hole.  I don’t feel that.  I feel massively anxious.  I feel panicky and distressed.  I can’t sleep for the millions of thoughts of all the bad things that could happen to me or the people I love.  I check plug sockets a lot.  I feel I can’t breathe, that something is trapped in my chest.  My heart pounds.  My throat closes.

Not all the time, there are times when I feel ok, there are times when I am fine.  When I feel that things will get better, that it will all figure itself out.

Then BANG! It hits and I can’t breathe.  I walk down the stairs and see myself falling and breaking bones, I get on the train and imagine the carnage of a derailment, I go to events and think about how I would get my family out if there were an attack.  I look at my hernias and think that I have had my fill of surgical luck and what if, this time, I die.  I panic when Timm goes out, visualising the policemen coming to the door to tell me he has been in an accident.  I think about the kids getting snatched, or hit by a car, or falling and cracking their head open on a kerb and never getting up.

And then later I am fine again.  I cook tea, I write articles, I have meetings, I go for a drink, I speak to friends.  I make plans.

Then it is there again.  Terror, fear, panic.  I sit in the garden at 3am to get some air, to overcome the stifling thoughts.  Adrenaline surges through my body, and I can’t sit in bed.  It compels me to get up and wander through the house, checking.  Checking the kids, checking plugs, checking locks.

And on and on, the cycle goes.

Well, it is time for it to stop.  And so, though I find it very hard to talk about, I am putting it out there.  The events in our life have to have an effect on our mental and emotional health, I know there is no shame in admitting this, but it is still tough.

This isn’t me, I am not a worrier or a panicky person, I am ever an optimist and think things will be fine, so it is a shock to suddenly have these thoughts and anxieties.

I know I am not the only person going through this and I just hope that in writing about it, I can help someone else to speak out and get themselves help.  I am not an expert, I have little experience in mental health, but I do know that when I have written about my physical health, that it has benefitted others, so hopefully in writing about this new hurdle, I can help someone else too.

 

Sam xx

I am rubbish at sharing my feelings

You may read this title and laugh, after all this whole blog is filled with my feelings. I post a few times a week eloquently and whole heartedly sharing how I am feeling with the whole world.  If anything, I’m an over sharer! I tell you lot intimate and private parts of my life and chuck a few photos in to boot. 

So what am I talking about? Well, talking.  You see, as much as I can blurt out my inner demons on this page, and even when I do public speaking or media I am perfectly happy and able to speak out about all manner of feelings, emotions and experiences.  Yet, I find it ridiculously difficult to speak to the people I love. 

I told you all in my last blog post that I have two hernias and that I’m feeling terrible.  I’m scared, angry and really devastated.  This, of course, means that I’ve had real life friends and family reach out to me to help. To listen. To be there. 

Yet I just can’t open up. I gloss over, I make a joke, I change the subject.  If pushed, I will briefly say that I’m upset and unhappy but then I move on.  I just wonder why I’m like this when I can pour my heart out on this blog?  

  
I do speak to Timm. I am honest and allow him in.  We’ve talked all weekend about how I feel, how he feels, how he can help me.  He’s held me as I wept, listened to me rant and told me I’m a nobhead when I said that this wasn’t getting any easier and perhaps my life will now be filled with health complications so if he wanted to leave now, he could. 

I’ve got some wonderful friends and family, and it makes me sad that I struggle to reach out to them.  It’s not because of them, I love and trust them and know they want to help me.  I think there’s a big part of my personality that is a people pleaser, I want to make others happy and so I sometimes feel like I’m bringing others down if I tell them how I feel. 

I know this is cliched as hell but I think a big part of my issues go back to my father leaving and not giving a shit about me as a child.  I suppose I always worry that people will leave me, that I’m unlovable therefore I need to be as easy to be around as possible to make sure people stay. 

I do talk to friends, but I wish I could find it easier to open up and lay my feelings on the table. To ask for help and allow others to be there for me. It’s so important to talk to those closest to you, I say time and again in replies to messages I get, that we have to be open and let people in. Yet I’m probably not following that advice myself. 

And so I’m going to try and make an effort to speak out IRL (as the kids say… In Real Life for the oldies!) and not let the demons of my past affect my present and my future. 

Thank you for all the kind messages I’ve received in the past few days, you guys are awesome. 
Sam xx 

Please don’t stop inviting me

When you have a chronic illness, one of the things that cause guilt and stress is letting people down, I hate that I am sometimes so slack and have to say no to plans, often at the last minute.  To anyone I let down, I am sorry.

But please don’t stop inviting me…

I know it is frustrating when I call (or more likely do the cowardly text) at the last minute, I am sure you look down at your phone and roll your eyes and think ‘here we go again!’ I am sorry that I cancel on our plans, but I swear, in the cheesiest of lines, it’s not you, it’s me.

Whether it is last minute pain, fatigue or anxiety, whether it is physical or mental, I know that it can seem to you that I must not care.  I know that you may analyse my excuse and logically come up with an outcome where I could make it if I really wanted to.   I know that it makes you sad, or angry, or fed up.

But please don’t stop inviting me.

sam cleasby so bad ass IBD blogger and writer

I know you have been there for me and come to my events, my parties, my coffee breaks.  You make the effort to visit me and be an amazing friend.  You put yourself out and very rarely cancel and it must be so frustrating to have a friend who doesn’t return the favour.

It must be quite difficult having me as a friend, I don’t have a normal level of consistency in my life, it is one thing or another with my health and if it isn’t a physical thing, years of living with these issues have made me mad as a bag of frogs.

But please don’t stop inviting me.

I am sorry for that time I missed your child’s birthday party, I am sorry I didn’t come on your planned trek to the countryside, I am sorry I bailed on your last party, I am sorry I cancelled our brunch date, I apologise for saying I would definitely come to that yoga class with you then abandoning you to do it alone.

I feel terrible that I didn’t call you more regularly when my problems seem to fill my whole head space, it makes me sad to know that I am not the best friend in the world, I’m sorry I wasn’t there for you.

But please don’t stop inviting me.

I know I am sometimes slack and I cancel on you.  This illness of mine sometimes makes me selfish and clouds out everything else, but know this.  I may not be present, but you are always in my thoughts, I might miss your event but I love you dearly, I bailed on your party but I am loyal, caring and my friends mean everything to me.

Even when I don’t make it to your events, please know how much it means to be invited.  Your offers mean everything even if I know I can’t make it.  Thank you for making me feel normal, for not being put off by my illness, my cancelations, my issues.

Please don’t stop inviting me.

sam cleasby so bad ass IBD blogger and writer

It takes a very special person to be friends with someone with a chronic, life long illness.  You lose friends and family members along the way when you are ill, it is a time where you find out who is really there for you.  Some people can’t hack it, they walk away and don’t want to be part of your life because it isn’t all sweetness and light.  These fair-weather friends are only there for the good times, when the shit hits the bedpan, they are out of here!!!

But the people who stay are true gems, and I appreciate the friends and family who have stuck by my side throughout the terrible lows and been there to cheer for the amazing highs.

Thank you to my amazing friends.

Thank you for never stopping inviting me.

 

Sam xxx

Disappointment 

I’m feeling pretty down today and it’s because I feel really disappointed. My mum said earlier something that struck me, “you throw yourself into things and people 100% and then you’re disappointed when others don’t do the same.”

I think she’s right and I think that’s my problem rather than other people’s. 

I am an enthusiastic person and I probably have too high expectations of others. I believe in people and then I feel let down when they aren’t what I thought.  

I get cancelled on a lot. And I do wonder whether it’s just coincidence or whether I’m doing something wrong? Am I over the top? Am I too open? I try and please a lot, I know that. I want people to like me and I feel sick to my stomach when I think someone doesn’t like me or when they walk away. 

A lot of it probably comes down to my dad leaving. I think I have abandonment issues, then in the past few months three close family members have decided they don’t want to be part of my life and that’s tough. 

I have been trying to arrange an event for Crohns and Colitis UK and have found myself overwhelmed with the work and lack of support.  Today we’ve had to cancel the event because we didn’t sell any where near enough tickets. I am absolutely gutted and feel I’ve let down the charity. But I also feel really disappointed that others didn’t really pull together to get it off the ground. 

This is probably unfair of me, again my expectations of others have led to my own disappointment. I have to take responsibility for this, no one else has the ability to make me feel disapointed, it’s my own ideals that have done it and I don’t have the right to put expectations on other people. 

I think I’m just feeling a bit sorry for myself, I know I am so lucky to have some wonderful friends and family and I think I need to focus more on the people who care about me than on those who don’t. 
Sam X 

He. 

It was 1995.  I was 14. I met him in Meadowhall, he called out to me and said I was beautiful.  I was flattered as he was older. If an older man thought I was attractive, then I must be pretty cool, right?

He caught my hand as I walked past him and his friends, pulling me towards him. I blushed and looked at the floor. He called me gorgeous and said all the things that men in movies say to women.

He asked for my number and I got flustered, I told him I was 14 and he couldn’t call my house as I’d get in bother with my mum and so he gave me his and told me to phone him.

I did phone him. That means I wanted it, doesn’t it? He said he was glad I called as he’d been thinking about me all day. I was flattered.

He asked me to his house, I asked if his mum would be in and he laughed and said he lived alone. He was 20, he said.  I told him again I was 14 and he laughed and said I was really mature. I felt proud.

I got dressed up. I wore a short skirt, a top and my denim jacket. I put on make up. I want to look pretty for my date.

I went to his house alone. I wasn’t dragged or threatened. I’m a stupid girl, aren’t I.  He had a room in a shared house and so we had to go to his bedroom. I thought we were going to talk.

He pushed me back on the bed, I panicked and tried to sit up.  He tells me that I’m gorgeous. He says I came for sex. I’ve never had sex before, I snogged a boy once.  I’m scared.  I try to act like a grown up in a film, I toss my hair over my shoulder and laugh. I say let’s take it slowly. Let’s go out.

He gets angry. He says I’ve led him on. What am I? A dick tease? He thought I was a proper woman, not a stupid little girl.  Why did I come there if it wasn’t for sex?

I’m scared. I start to cry and try to get off the bed but he pins me back. He says I’ll enjoy this. He is on top of me, pulling at his jeans as he pulls up my skirt. I freeze. I don’t fight.

Before anything else can happen, there’s a knock at his door, it opens and his housemate laughs and says he’s sorry to disturb us. I get up and run.

I run out of his room and down the stairs. I run out of the house and down the road. My chest hurts but I don’t stop running till I’m home.

I don’t tell anyone. I’m ashamed and blame myself.

I talked to a stranger. I phoned him. I wore a short skirt and lipstick. I went to his house. I went to his room. I didn’t fight.

I never knew I’d been sexually assaulted. Because I was taught that rape was a scary man in a mac who drags women off a street corner.  I always believed that I’d made a huge mistake, I blamed myself entirely.

It was only recently that I could actually accept that this man had deliberately used me as a young girl.  Isn’t that sad. I didn’t know.  I thought it was just a rubbish experience that I had put myself through.

I read about Adam Johnson and that he has been found guilty of sexual activity with a child and hear he will be imprisoned and I sigh, thankful that life is getting better.

Then I read the comments in the news and on social media.  That girl was asking for it. She got in his car because she wanted to. She was loving it. What was she wearing? What sort of girl is she? And I realise that we still live in a world where victims are blamed. Where children are used by adults yet we still look to the actions of the child.

Where thousands of girls in Rotherham were groomed and abused, brainwashed and hurt, yet society didn’t protect them because they weren’t women dragged off the street, screaming and fighting by a man in a dirty mac.

We need to open our eyes, see the many shades of assault, that it’s rarely black and white. That although no always means no, sometimes it’s too scary to utter that word because you’re frightened of what will happen.

For years, I carried this with me and always blamed myself for putting myself in that situation. I didn’t tell anyone as I was sure they’d say I was stupid.

Enough.  I wasn’t to blame. I was a child taken advantage of by an adult.

Let’s speak out and end the cycle.  Teach our children that they aren’t to blame and they can speak out.

No more silence.

 

If you need support, get in touch with The Survivors Trust.

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

Well, that didn’t take long…

So, I’m back. My ‘break’ lasted 12 days.

Honestly, I’m glad of the downtime.  I’m still not great mentally and emotionally, lots of things in my life are still totally up on the air, but I realised that staying away from this place wasn’t actually making me feel any better.  If anything I felt worse.

This is my sanctuary, my place to verbally vomit all the stuff in my head out into the world.  When I don’t have the ability to share here, my head feels very, very full.

Things aren’t great.  I’m still struggling health wise and waiting for my surgery date to have my Jpouch removed and a permenant ostomy.  I’m going to the loo a lot, having accidents and lots of crampy pains.  I know the surgery is the right way forward but I’m terrified. It’s a big op and I’m scared about all of it, not least that it’s just so permenant.

At home, we are still in the midst of a banking/mortgage/house stress nightmare!  I won’t go into it except to say that getting a mortgage when you’re both self employed is more complex than the Krypton Factor and Mastermind put together.  This is just leaving me feeling really anxious and unsettled.

Finally, the book thing. Well, I had a bit of a breakdown over that. I felt really disheartened, like I’d been found out as a fraud and that I couldn’t really write.  I felt useless and silly.  I felt that I needed to stop being stupid and fanciful and just get a proper job.  I couldn’t face writing anything, every word on paper made me shrink back and cringe.  That old demon on my shoulder whispered that I was stupid and foolish and that everyone was laughing at me.

The past couple of weeks have been hard.  There’s been times that I just couldn’t breathe, I felt so overwhelmed with sadness and fear.  I still don’t feel great.  I feel like I should get a fucking Oscar for the show I’ve put on for family and friends.  There were times when outwardly I was laughing that I felt like shaking them and screaming “THIS IS ALL AN ACT!!! IM DROWNING!!!”

But really, I think it’s actually done me good to force myself to get out and see people, to go to parties and have friends over. Because when I’m out, I can’t let the sadness take hold, I have to jolly myself on and that, if nothing else, is a lovely distraction.

Every time I have made myself be sociable, no matter how much I dreaded it beforehand, I felt a million times better after.  Every physical connection to others has benefited me mentally. And that’s something to take away, I think, that it’s easy to want to hide and weep when you’re feeling down, but making yourself see your favourite people, even if you don’t talk about how you’re feeling, is good for the soul.

I read all your kind messages on my Facebook page and Twitter and they meant a lot. Thank you and sorry for not replying to you all.

There was one message that caught my eye in particular.  It was from my friend Curtis Woodhouse, Curtis was a professional footballer and then he decided that he wanted to be a boxer.  He was mocked by so many who said that he would never make it.  He kept on going despite all that and he became the British Light Welterweight champion!  He never gives up and so his message made me think that I needed to be a little more like him and keep going.

curtis woodhouse

“Sam, just a quick message, an author called Donald McRae wrote a book called Dark Trade, it got knocked back by every publisher that he approached, he believed in the book so kept going with it, finally it got picked up, I think it was about 15 years ago, it’s still selling now, Its one of the best selling sports books ever, Don has won award after award for his writing, he’s the best of the best, go online and read up on the book and a bit about Don, might inspire you to carry on or it might not, you can’t just give up because publishers don’t think the book will sell, if you give up on it why shouldn’t everybody else?

Suck it up, still got a few more rounds of fighting left in you x”

curtis woodhouse sam cleasby

And so here I am back on the blog.  Because (and don’t tell him this, because he’ll get ever such a big head) perhaps Curtis is right, if I give up on myself, why shouldn’t everyone else?

This girl may be a little crushed, a little damaged and a little sad right now, but she definitely has a few more rounds of fighting left in her.

 

Sam xxx

I think I need a break…

I started this blog two and a half years ago and I have loved every second.  Starting from a humble desire to share my hospital visits and explain my illness to family and friends, it has seen me document every minute of my journey through ulcerative colitis, three surgeries, the loss of my large intestine, one stoma, two hernias and one Jpouch. As well as all the emotions that come with these huge, life altering events.

Today I sit here, awaiting my fourth surgery in two years and it’s a biggy.  They’re going to remove my Jpouch, form a permanent stoma and get rid of my bottom. They’re also going to attempt to sort out all the gynae problems that have been caused by all the surgery.  It’s a long and complicated surgery and I am very anxious about it.

I’m scared, angry and upset that this is happening. I’m so fed up of my body being this broken thing that affects everything. I’m tired of being a burden to those around me.  I’m sick and tired of being sick and tired.

I also sit here feeling disheartened and disappointed in myself. I’ve spent the last 9 months working with an agent and many publishers trying to get my book about IBD, ostomies, disability and how to deal with the shit that life throws at you out to the public.  And yesterday I got my last ‘no’ from the 12 publishers we have approached.  And I’m crying.

I’ve worked really hard because all I’ve ever wanted was to use the massively shite life I’ve been given to help others. I love my blog.  I really do. Every message I receive makes me believe in myself a little more. Each one reminds me that as I sit tapping away in my bedroom, that millions of people in the uk and around the world are struggling too, and that my words might just help a tiny bit.

You can’t imagine how much that means.

But right now, between the stress, anxiety and sheer terror of facing this next operation and the utter heart breaking disappointment of not getting published, I think I need a break. We are dealing with a complicated house move at the minute too, which isn’t helping.  We’re hoping to move house but dealing with banks and mortgages when you are both self employed is so complicated and stressful and on top of everything else, I just feel so unsettled and without a solid base.

I feel like a failure. In so many ways. I feel my body is failing me. And I feel I’m failing my family and this wonderful audience by not reaching this goal of the book.  I struggle with the idea that I am ever good enough, the chip on my shoulder is that I’m not smart enough, that I don’t have a ‘proper’ job and that I just don’t have the ability.  I know that books get turned down every single day and that I am nothing special in that way, but the idea that I have wasted all these months hurts.

I feel so low that I can’t offer even a tiny glimmer of hope to readers at the minute.  I feel I’m in this dark place that won’t allow me to say something helpful, something inspirational, something positive.

And so I’m taking a little break from the blog and social media, I always think that if you’ve nothing nice to say, it is usually better to shut up.

My family put up with a lot from me, my illness, my inability to work, my emotions. I feel right now, I have very little to offer and what I do have, needs to be focused on them.

I’m sure I’ll be back. But for right now, can I thank every one of you who has read this blog, followed me on social media, messaged me, spoke to me, met me.

I hope you all have the merriest of Christmases and I hope to see you in the new year.
Sam x