Tag Archive for: relationships

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.

sam cleasby timm cleasby

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.

age gap relationships

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.

age gap relationships

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.

sam cleasby mother parenting

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!!

sam cleasby mum parenting blog

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.

sam cleasby mum parenting blog

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

 

 

 

Life with chronic illness – what it's really like

“Get well soon!” That’s just one of those every day sayings right? But what if you have an illness that you will never get better from? The worst part about having a chronic illness is that it is a life sentence, unless there is some miracle cure, if you have a chronic illness, it will be with you for forever, there is no getting better soon, no happy ending,  there is no end in sight, there is no cure or end game.

And that is why, often it isn’t the physical pain that is the hardest thing to deal with, it’s the emotional pain that goes along with it.  The guilt, the idea that you are a burden to those around you.  It can feel like you are being crushed, that the illness is drowning you and swallowing up the person you are, leaving only this shadow of a person, a patient, weak, ill. It is so hard to deal with this.

How on earth can you fight this emotional suffocation when the root of it is never going to leave you?  If you have a ‘normal’ illness, you see the doctor, get a diagnosis, receive treatment and get better.  Chronic Illness just doesn’t follow that path.  Often diagnosis is difficult as the symptoms can be confusing and varied, it is so hard to quantify a tiredness that never goes away, or a feeling that your limbs are lined with lead.  How do you explain that your mind whirs constantly whilst simultaneously feeling like it is filled with porridge?

sam cleasby ibd blogger sheffield chronic illness

Being ill in this way is living with the unknown.  Every day is different, it’s hard to plan when you have no idea how you will feel when you wake up, not knowing whether you will feel ok or like you are 100 years old.  And so it is hard not to feel anxious, depressed or completely lost when you are in living one huge question mark.  There are constant questions and often no answers.

When people say “Get Well Soon” or ask how you are feeling, it is an uncomfortable exchange, you can either lie and say ‘fine thanks’, or horrify them with honesty ‘Well I have a slight blockage, a hernia, I have been to the loo 16 times today, the acid in my poo has burnt the skin on my bum and I am so tired I feel like I am dying’ or the one I usually go for is ‘getting there!’ with a cheery thumbs up…

People don’t know how to deal with chronic illness, both the person who has it and the people around them.  There is no guidebook for lifelong illness, no way to answer all the questions because it is so personal and there are so many illnesses that are a lifelong battle.

When you have an autoimmune disease, your body is literally fighting against itself.  The physical side of it is all through the body, living with daily pain, fatigue, aches, toilet trips, medication, food intolerances along with hospital trips, surgeries, treatment.  It is, at times, too much to bear.

But mentally and emotionally it is devastating.

The title of this post is ‘what it’s really like’ and I want to try and explain how I feel mentally…

I feel like my body is a failure, that it lets me down constantly.  I feel guilty.  I feel like a burden to others.  I feel like I let down people around me.  I feel like someone has a grip on me, a crushing hold on my chest that is squeezing the life out of me, holding a pillow over my face.  I am exhausted from trying to be stronger than I feel.  I feel a sickly jealousy when I see healthy people.  A heavy hearted knowledge that my illness affects my husband and children, that I am not the wife he deserves or the mum they need.

I feel a sadness that sits deep in my bones, a guilt that is a lump in my throat stopping me from speaking and an embarrassment that my body is so broken.

exhausted quotes chronic illness

That is a bad day.  On a good day where I have little pain, few toilet trips and energy in myself, I feel upbeat, I feel proud of myself, I enjoy life because I know this healthy feeling may only be brief, I love harder, I am more open, I laugh longer, I am silly, I am fun. I have hope.

And hope is key.  Without hope, we have nothing.

This is life and so you have to learn to live it.  And LIVE well.  Your life may not be the one you have hoped for, the life you ever imagined.  But is the one you have and there is nothing you can do to change that.

You can’t take anything for granted, and sit on your laurels, you are ill but at least you have a life, there are many facing cancer and other illnesses that are terminal and so you can’t feel sorry for yourself.  (Not all the time, but sometimes everyone needs a full on mope!)

You learn to embrace and enjoy every good day you have, as you don’t know when the next one will be.  You learn to appreciate the small things, the good things in your life.  You take control of your own destiny and try everything you can to make your health better, through diet, medication, alternative therapies, talking, sharing, living…

Being sick makes you a lot of things, many negative, but some can be positive. Strength. Weakness.  Empathy.  Guilt.  Wisdom.  Fear. You have to take the lows, but learn to see, embrace and appreciate the highs too.

What is living with a chronic illness like? This is my story, but ask others.  You have a friend with ME/CFS? Lupus? Rheumatoid Arthritis? IBD? Don’t be afraid to ask questions, talk about it, tell them you want to hear how they actually are, not just ‘fine’.

The isolation attached to Auto Immune and Chronic Illnesses is immense and I feel that if we could all talk a little more about our lives, that we can help each other to bring discussions about illness into everyday life and make a difference to so many people.

This is my life with chronic illness.

Tell me about yours…

Sam xx

Tired, emotional, guilty

I’m so tired. And the tiredness leads to anger, hurt, guilt.

I have no idea whether fatigue is something I just need to accept? Whenever I mention it to the doctors they look at me like I’m daft. “You’ve been through a lot” they say, “give your self a break”, “it all takes time”. Perhaps I expect too much of myself, but I really just wish I could be normal.

Every night, I get up once or twice to empty my jpouch, several times a night I wake thinking about whether I need to go to the loo. Since surgery I tend to have these vivid dreams, you know the ones where you feel like you’ve had a workout when you wake up? I also sometimes have stomach pains, butt burn and accidents.

So when morning comes, I just can’t open my eyes. I just don’t hear the alarm and Timm gets up with the kids. Every day. And the guilt builds… I wake up feeling so drained and exhausted that I can barely function. My limbs are like dead weights, my head fuzzy, my brain screams at me to go back to sleep. I feel lazy and guilty.

Timm leaves me to sleep as long as I need to. He never mentions it apart from asking if I had a bad night. But the guilt inside me is enormous, I feel I’m letting them all down. I feel like everyone thinks I am lazy.

I usually get up at 9am, a full two hours after I should get up. Some days I manage to get straight down into the office, some days I work from my bed. By midday I feel more energised and I try and get as much as I can done, but by 4pm I am flagging massively and could quite easily nap. Evenings are better for me, I feel more awake and often try and get housework done in this time. Then I’m usually in bed by 11pm (sometimes way earlier).

I don’t know whether it’s my routine that isn’t helping? Some nights, despite being completely exhausted I just can’t get to sleep and lay awake for hours.

Or I wonder whether it’s my diet? I have found I am now really intolerant to most vegetables and so my diet is quite restricted. The lack of vitamins and minerals worries me. I’m waiting for an appointment with the hospital dietician and have thought about asking to have my b12 levels checked. (People missing certain parts of the colon will have difficulty absorbing vitamin b12 and some need regular injections).

Sometimes I realise I don’t remember what normal is. My normal is so far away from other people’s that I wonder if my comparing myself to them is stupid?

When I say I’m tired, others talk of their tiredness too, and I think maybe I’m just not as tough as most people! Then I remember that my body has been through so bloody much in the past 18 months. That I’m missing an organ, that I’m learning how to use my pouch, that my body fights against me eating most healthy foods, that my immune system is knackered.

The thing I need to deal with the most though is the guilt. I feel like I need to apologise to Timm for how rubbish I am in the mornings. I feel like a bad mum and a rubbish wife.

I feel I need to explain to everyone that often I have a big front on. And that front is the mirage to tell you “I’m fine!” “I’m not weak” “I’m as good as you” “I don’t need anyone’s help”.

So when I’m seen on Facebook or instagram in the pub or walking the dog, know that it takes a big effort to do that, and I do it because I want to have the same abilities as others, I don’t want to be sick.

Know that every journey or trip requires planning to know where toilets are, a packing of wipes and underwear, a knowledge that using public toilets is an embarrassing experience because of the noise, that I’m using up valuable spoons to do that thing and will suffer for it later.

Please just have a little understanding that despite my brash, shouty, activist exterior I am still healing, still learning how to accept and use my new body and still dealing with the emotional trauma that the past 18 months have thrown at me.

Sam ✌️&❤️

2014 – what a year!

What a year! I started 2014 in Sydney with my sister and our families, we travelled up the coast and had an epic road trip.  It has also brought me a hernia, a house move, surgery to create my jpouch, a couple of weeks in hospital, a new life learning to live without my colon or ileostomy bag and one more hernia!

I have been on the radio a few times, done talks all over the UK, hit my 100K views on So Bad Ass (now up to 160K) and started a writing course.  I also visited my aunty and uncle in Spain and honeymooned in Lanzarote with Timm  I made a new friend who has a stoma… we made friends because we have no colons but stayed friends because we are awesome and he makes me laugh in a rather unladylike fashion and knows, like really knows…  I made new friends without stomas who I now feel like I have known forever and I hung out with so many old friends who made every tough part of my year easier and every lovely part of my year happier.

We bought a hot tub, I got a big tattoo, I met Chuck D and Flavor Flav, went on a nudist beach and my sister came over to the UK to visit with her family.

I renewed my wedding vows to the best husband in the whole world in the BEST WEDDING EVER surrounded by all my absolute favourite people and married by one of my best friends Violet.

2014 has had it’s ups and downs.  The wedding was amazing, it was just the most beautiful and perfect day and to get to marry my perfect bloke for the second time was the best thing ever and my total highlight of the year.

The surgery was tough, 10 days in hospital after a long, difficult surgery and now 7 months later I am still recovering and learning how to deal with my jpouch.  The past 18 months have been the toughest of my life.  Being so ill and having life changing surgeries have been at times almost too much to bear, there were times when I felt so low, so broken and in so much pain that I just didn’t know how I would cope.

I learnt that coping is the only option.  Every day, no matter how hard it is, you have to just keep plodding, just keep swimming, just keep going… Having fantastic people around you helps and I am lucky enough to have some of the best.  My amazing husband, family and friends make it all bearable in those dark moments and I can’t thank them enough.

This year has seen So Bad Ass turn from a small personal blog into something that is read all over the world and (hopefully) helps people.  All I ever wanted from this blog is to make a difference to other people, to use my pain and my journey to help other people with IBD, to use it to raise awareness, raise money for Crohns and Colitis UK and to help people everywhere to have better self esteem, body confidence and to love themselves.

You are all amazing and I thank you from the bottom of my heart for every read, every like, every tweet, every share, every kind word.  You are awesome!

Enjoy and I will see you in 2015!

 

xx

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Thanks again for an amazing year, if you fancy doing something wonderful please go to my Just Giving page and give whatever you can to Crohns and Colitis UK.

 

Have an amazing christmas and a brilliant New Year!

 

See you in 2015

 

Sam xxx

Wedding Video

As some regular readers may know, on 6th September 2014 Timm and I renewed our wedding vows after 10 years of marriage.  It was at the end of the toughest year of our lives, almost exactly a year before I had a subtotal colectomy and ileostomy and 4 months before I had another big surgery to create a jpouch.

This year was HARD and there were times that we really considered cancelling the renewal of our vows but we decided we would go with it, we wanted to celebrate together that our marriage was stronger than ever despite the enormous pressures we had faced and we really wanted to celebrate with our family and friends and have a day filled with joy, love and happiness.

We invited Helene from Cuckoo Films to document the day for us.  We wanted an overview of the wedding renewal and something that would show our personalities.  We are blown away with the result.  I cry EVERY time I watch it and just feel so blessed and happy.

Thank you tons to John Ashton of Little Gem for the amazing soundtrack.

 

Enjoy x

 

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