Finding out who your friends are

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Chronic illness has a lot of downsides. A LOT!  Apart from the physical effects, the surgeries, the time in hospital and the emotional and mental effects, it can massively effect your social life and friendships. 
I think it really does show who your friends are though.  I get that my illness has gone on for a long time, I know this more than anyone. I know it must be hard to be friends with me at times, I’m not the worlds most reliable person after all. I cancel on plans at the last minute and there’s times where I am so unwell that I can’t be there for the people I care about. 

But it makes me really sad that there are friends who sometimes seem to forget about me.  Maybe they are fair weather friends, only there when I have something to give back, only there when I am able to be fun and go out.  Or maybe they just don’t know what to say to me? 

I know it’s not just me too. I get a lot of messages from readers who are facing the same thing and are unsure of how to deal with it which is why I decided to write this post.  I don’t want to sound self obsessed or bitchy but it is definitely an issue for people with long term health conditions. 

Scope did a poll where they found that two thirds of people feel awkward around disability. Perhaps the same applies to illness?  Maybe people are worried about the right or wrong thing to say? Maybe they’re concerned about offending? 

I understand that feeling of being scared to say the wrong thing. Of worrying about sticking your foot in it and saying something that may upset the other person. But dude, just do it. Send a message, pick up the phone, arrange a visit. 

I try to see the best in others, I think it’s better to assume the best in people rather than thinking the worst and so I try and think of reasons behind this behaviour.  Perhaps they’re just really busy, they have their own shit to be dealing with.  It’s easy to slip your mind when your life and struggles take over.  Maybe they don’t know what to say or they are having their own issues? 

I have some amazing friends who I couldn’t cope without, who are always there for me.  They put themselves out to come and look after me, cook and clean when I can’t.  They visit, call and text and those people I am truly grateful to. 

I know it’s tough being my friend.  I know there are these vast time periods when I am so ill that I can give you nothing back. Believe me when I tell you how sorry I am that there are times when our friendship is one way, I’m sorry that sometimes I need more than I can give.  But know that as broken as I may be, I am loyal and loving and kind and when my stupid, bloody illness allows, I will be there for you too. 

Sam xx 

Crohns and Colitis UK Community Champion! That’s me!

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Oh blimey! I am so overwhelmed and proud to let you know that I am now one of Crohns and Colitis UK’s Community Champions.

“Crohn’s and Colitis UK’s close community is our biggest strength and we would not be able to continue our fight against Inflammatory Bowel Disease (IBD) without the support of those who are making a huge difference to support the charity and the wider IBD community.

We are honoured to recognise several dedicated supporters as Community Champions, because of their dedication, passion and exceptional efforts. Community Champions do incredible work across the UK, they are campaigning to raise awareness in the media, striving to resolve stigma associated with bowel conditions, raising money that funds research, support lines and much more as well as volunteering to support their local community.”

sam cleasby crowns and colitis uk community champion

 

I became a member of Crohns and Colitis UK shortly after I was diagnosed with Ulcerative Colitis.  I had never even heard of the illness before the doctors told me I had it.  At first I was just relieved that I didn’t have bowel cancer, but then as I read up on it, I got pretty scared.  I searched the internet for answers and found some scary stories that made me feel worse than before, and then I found CCUK.

It was such a relief to find a website with all the information and support that I needed in one place, I used the forums and read up as much as I could.  Then when I had my surgery to remove my colon in 2013, I rediscovered the site and it was even better, there was a lot of information but it was easy to read and access.

Crohns and Colitis UK have done so much for me and I knew that I wanted to give something back, I am a member and would recommend it to anyone who has IBD or is a carer or family member, you can join from £15 a year, get a magazine, can’t wait card and a ton of support and your money goes to research, support and information, if you join in October, you get a free RADAR key).

Since then I have done fund raisers, joined my local branch and raised awareness of this amazing charity and I will always continue to do so.  To be made one of their community champions is a very proud day for me.

sam cleasby crohns and colitis uk community champion

And I am in such amazing company too! Ellie Pugh is just 11 years old and has raised so much money for CCUK after being diagnosed herself, what an inspiration! My lovely friend Charlotte Guinea, who I met through our shared love of stopping poo being a taboo is also one of the Community Champions and of course, the wonderful Get Your Belly Out team.  Take a look at all the champions here.

I don’t do what I do for recognition, I do it because this is my life, I know how it feels to have IBD and face the uncertainties, fear and struggles of life with a lifelong, chronic illness.  I share my story because in my darkest days, I wish I could have read about someone else’s journey to give me hope that there is life after an IBD diagnosis.  But I am extremely proud, humbled and honoured to be part of something so special.

Thank you Crohns and Colitis UK, thank you

 

Sam xxx

Scars. Body image. And not really dealing with it. 

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It’s been a couple of weeks since my last op and slowly, my wounds and scars are healing.  It’s yet another big scar, though it has gone through the scar site of previous surgeries.

Just a warning that there will be some graphic images of my wounds in this post, so if you have problems with that, perhaps click away now.

Part of my scar opened up after having the staples removed and so I’m cleaning it daily and trying to encourage to to heal from the inside out.  This means I have a little hole in my tummy just above my belly button. Inside my belly button is also very slow to heal, so it’s a case of keeping both wounds clean and dry and letting time take its course.

Cleaning the sites is a little tricky as I can’t quite see, so I am doing it in the mirror. I have this magnifying make up mirror on my dressing table and that helps for me to see inside the wounds as I wash them.

Unfortunately it also gives me this close up, well lit, view of my stomach and all it’s many scars, marks and bruises. This morning, it all got a bit much and I got really upset looking at the state of my body.  I have always dealt with my scars quite well, I see them as war wounds and have always been quite proud of them.

Yet after surgery number 5, it is getting harder and harder to see the bright side. My stomach is covered in scars, my ostomy bag and currently lots of little marks and bruises as I’m injecting myself with blood thinners to counteract DVT and blood clots. (I’m not very good at it and keep hitting blood vessels!!)

I have to admit that I’ve sat and had a big cry. I just felt so sorry for myself and I hate that I’m moping but fucking hell, my body is a mess!  I saw myself with fresh eyes today and recognised just how battered my stomach looks.  It made me wonder how Timm could ever find me attractive again?! He’s loving and sweet and I know he’d never say anything unkind to me, but it must be tough for him to see how awful my body looks right now.

I’m sorry this is such a ‘woe is me’ post, I know I’m usually banging on about empowerment and loving your body but right now, I’m finding it tough.

Saying that, I still do respect my body and think I’m a total badass! I love that I’m still standing (well mostly sitting or laying) after everything that’s been thrown at me. I’m in awe that my body is doing such a great job of healing itself after surgery.  I feel tough and strong knowing that I’ve been through a lot and I’m here.


But I think I’m allowed a whinge. I’m allowed to feel shit. I’m allowed to complain and cry. So here it is.

It’s not fucking fair. This isn’t fair, I don’t want this, I’m sick of having operations, I’m so fucking fed up of not being well and ok. I hate looking in the mirror at my scars, these open wounds make me feel queasy.  I am fed up, angry and heartbroken that 3 years after the first surgery that I thought would solve all my problems that I’m still struggling.

I feel hopeless. And that’s the hardest feeling. It’s like I can’t feel optimistic because optimism hasn’t faired me well so far. There’s no point in believing this will be my last surgery as I’ve thought that every time and it got me nowhere but disappointed. So it’s probably easier to assume the worst and then at least I’ll be proved right.


Fuck, I hate that I’ve just written all of that. I read it back and it’s not me. I’m not a pessimist, I should be sticking rhinestones on myself and celebrating the silver linings but right now I just can’t.

I read back at my older posts and wonder what has changed. Why don’t I feel hopeful and optimistic now when I have in the past?  I’m now aware just how annoying it must have been to read my jolly posts whilst you were struggling.  Sorry about that!

People say I’ve inspired them. I find that hard to say because it sounds big headed. But I am proud that in sharing my journey that I have helped people. I just hope people can find comfort in the rough posts too. I’m sorry I can’t be rainbows and kittens for you today, but I hope anyone who is having a tough time can read this and know they aren’t alone.

Sam XX

It doesn’t happen to people like me… World Mental Health Day

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Mental health issues, they don’t affect people like me.  I’m a natural optimist, a giddy kipper who is loud, giggly and excitable.

People like me don’t get depressed. Don’t get anxiety. People like me are ok Jack.

Only it turns out that mental health issues don’t care about optimism or character.  They’re not bothered whether you’re old or young, rich or poor, working or at home.  They’re not fussed about race, sexuality, ethnicity or gender.  Mental health issues strike without prejudice.

When I was diagnosed with anxiety and depression this year, it floored me.  For a while I couldn’t accept it, feeling that some mistake had been made. I wasn’t embarrassed, I have many people in my life with a whole host of mental health issues and never judged one of them.  I felt compassion for them, I wanted to help them.  But I didn’t see myself as the sort of person with depression.

But what is that? What does that person look like?  I imagined someone in bed, crying and alone, someone who always looked sad and miserable.  A pessimist, someone who saw the glass half empty. I basically imagined Eeyore in human form.

How patronising and judgmental of me.  It goes to show that mental health issues need to be spoken about more.  I’m a left wing, feminist, socially conscious person who desires to be aware of the struggles of fellow people and who would fight for the freedoms of others.  Yet I was holding silly, preconceived ideas of what a person with mental health issues looked like.

Depression takes many forms and has many faces.  And it took me having episodes of pure anxiety to recognise it in myself.

It has been terrifying to admit my feelings and one of the toughest things I’ve had to do is to go to the doctors and open up about the scary thoughts and feelings I’ve had.  To write about it on this blog and on social media took a lot of courage, but from that I have received nothing but support, compassion and help.


If you are struggling, I beg you to speak out. I promise you that you aren’t alone and that if you can take this massive leap, things can start to get better.

There’s no shame in asking for help and the stigma of mental health issues will only continue whilst we don’t speak out about the reality of it.

For a long time, I thought that mental health issues didn’t affect people like me.  Till it did.

On World Mental Health Day, please reach out, learn more, raise awareness and hold out your hand to anyone in your life who is affected.

www.mentalhealth.org.uk/
Sam XX

18 years ago today…

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I was in the Leadmill with my friend Lizzy, her boyfriend was the DJ at a new club night and she’s got us tickets.  I wasn’t going to go out but she really wanted to see her fella so I agreed. 

We went and danced and partied and I was glad I’d made the effort to go out.  She went to see her boyfriend whilst I went to the bar and as I looked up at the DJ box for her, I spied a man with long hair wildly dancing hanging off the booth whilst taking requests and was just a little bit smitten!


I recognised him as the bloke I’d seen a few weeks earlier in the same club skating in and dancing with friends. I’d wanted to speak to him then,  but bottled it.  Lizzy came down and I asked about him, she said he was called Timm and that I should come meet him. 

I know people may not believe this but I used to be so shy and unconfident and I was too embarrassed to speak to him. So she dashed off and jumped up to the box and called the immortal words “HEY! My mate fancies you!” 

I was mortified. 

He looked down and said “the one with a skin head?” She nodded. “Bring her up!”  Shyly I went and said hi and he handed me some champagne in a chipped mug. I thought it was the coolest thing ever! 


One thing led to another and 18 years and three kids later, here we are! 

Timm is my best person in the world, he makes my life happier, fuller and better and I know it sounds cliche but I genuinely love him more with each year that passes. 
I worry about him. I worry that all the stress and hardships of my illness will be too much for him.  He’s a good bloke though and I know he’d never just walk away but this makes me worry that he feels stuck with me, that I’m a burden to him. 


I worry that he has turned from my partner to my carer and that I make him unhappy.  Often people think so much about the person who is ill but their partner is expected to just cope with it all.  Timm’s had to do so much for me in the last 13 years and the past 3 years and 5 surgeries have put so much strain on him. I feel sad that the cause of his stress is me. 

Timm makes me feel like the best woman on earth, he tells me I’m beautiful even when I’m in pyjamas and unable to shower and haven’t slept for two days.  He says I’m the best even when I know I am further towards the worst.  He makes me laugh even in my darkest hours. He listens, he supports, he makes everything better. 


I thought I loved Timm when I was 18. And I did! But the depth of my love for him now at 35 is so much more than I could have ever imagined.  It’s a love that comes with time, he knows me better than anyone else in the world, there’s no facade, no fakery, nothing hidden.  

He is my everything. And though I struggle with feeling that I’m a burden to him, and worry I’m not good enough, he has my heart and always will. 

Happy Anniversary of when a skin head’s friend told you that she fancied you. 

18 years bubsy xxx 

How to not be a dick patient in hospital

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I have spent a lot of time in hospital on the wards, it adds up to months and months of my life and in that time, I have seen a lot.  Mostly good stuff, but some things that set my teeth on edge!  I love our NHS, we are so lucky to have one of the best health care systems in the world that is free at the point of use.  Our NHS is run on nurses, wonderful, brilliant, hard working nurses, as well as a whole plethora of support staff, doctors and surgeons who work together to give us outstanding care.

I know it goes wrong sometimes, I have had the odd bad experience with nurses and doctors and that’s not ok.  But you know what is really bloody wrong? The amount of crap nurses have to put up with from some patients, and so I thought I would give you my guide to avoid being the patient everyone dislikes, how to not be the one who sets the staff’s teeth on edge, how to not be a dick patient in hospital.

dick3

 

Be polite.

It’s a simple one, but oh, so important.  I know you may be in pain, frightened, at your lowest ebb, but manners cost nothing.  Say please and thank you.  People are doing things for you, therefore you should thank them for their time and effort.  Need a bed pan? Don’t demand, ask nicely.  Has a member of support staff just cleaned your shit up? Say thank you!

You aren’t more important than anyone else

Your illness is important to you, but your pain and suffering is no more or less important than anyone else on the ward.  Your needs will be prioritised by someone in the know.  Don’t assume you should get attention above others.  I have seen it a million times when a patient calls your nurse away from you.  Wait your turn!

Be humble

If you are laid in bed and unable to do anything for yourself then no matter how much money is in your bank or how important your job is, you are at the bottom of the food chain, so be humble and grateful to those around you.  That woman mopping the floor is currently lapping you, so thank her.  The man making you a cup of tea is beating you in the ‘being able to get out of bed, go to work and make tea’ status, so smile and be grateful.

hospital drip stand IBD disability

 

Don’t be a dick

I know you may be in pain and feeling terrible, you are probably scared and shaken, but don’t be a dick about it.  The staff know it is hard being a patient and want to do everything to make you comfortable, they don’t deserve to be shouted at, mocked or abused.  I have heard patients loudly comment about nurse and support staff’s weight, appearance and sexuality.  Not cool.  Not cool at all.

Speak up, don’t scream out

If you are struggling, speak up.  But don’t scream out.  It can be frustrating and anger inducing to be in hospital, but don’t lay this at the feet of the people caring for you.  They are at work and doing their job, they are human and don’t deserve to be a verbal punching bag for you.

ibd hospital jpouch canula medications

Be respectful

Respect is a two way street, I have seen patients scream at nurses, call them names and then whinge that they aren’t liked and everyone ignores them.  The people caring for you are doing a tough job, give them credit for caring for you for little more than the living wage.

Think of your fellow patients

You may be at your lowest point, but it’s likely that so are the other 7 people on your ward, so think of them too.  Keep the noise down, smile at them, don’t be nosy about their private medical needs.  “So, what you had done?” is never really an ok question in my books.  If people want to talk about themselves they will, don’t pry.

sam cleasby ulcerative colitis ibd ileostomy surgery

If it’s good, say so…

If you are receiving great care, then say so, thank the person, tell them how much of a difference they are making to you.  If you feel a certain person has made your life so much easier, then let them know.  My nursing friends tell me that even in their worst nightmares of shifts, the praise and gratitude of one patient can make it all better.

 

So much is put on the behaviour and attitude of NHS staff, and rightly so.  They should have to behave in a way that is respectful, caring and professional, but us patients have our role too and we need to think of others even in our own greatest time of need.

 

Sam x

Surgery number 5

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Like Mambo number 5 but with more general anaesthetic!

So if you follow me on Facebook, twitter and instagram, you may have seen that I have been under the knife again.  I have had two hernias develop since my last op in January and I was on the waiting list to get them fixed by Mr Brown but last week, out of no where, I had a huge, sharp pain in my stomach and my incisional hernia (that runs through my belly button) had popped out and got stuck.

I was sick with the pain and knew immediately that I needed help, I never go to A&E as I hate the waits and the people in the waiting rooms (I know that’s judgemental, sorry!!) But I called Timm from work and asked him to come home and take me to hospital.

incisional hernia with ostomy

I was vomiting with the pain, sweating, crying and a general mess but was seen quite quickly and taken onto a surgical assessment ward where doctors thought I would need surgery as soon as possible.  I stayed in overnight and had a CT scan as they thought that there were loops of bowel stuck through my hernia and were worried they would be damaged.  The scan showed that the hernia was very large and there was fat and tissue stuck through it but luckily no bowel.  I was very relieved as I don’t have that much left, so I can’t risk losing any more!! The other thing it showed though was that my parastomal hernia was worse than imagined and the two were almost joining up with only a centimetre between them, so surgery was the only option.

It was all such a whirlwind, the next thing I knew I was being prepped for surgery, and then I awoke in recovery!  It was a big surgery, almost 5 hours long and a lot more complicated than the doctors had first thought.  They had to open me up and pull in the muscles from the sides, remove the tissue that had been stuck and fix the two hernias with two types of mesh.  One was made from pig skin, so you can officially call me Miss Piggy!

incisional hernia with ostomy surgery

After a few days in hospital, I asked to be discharged home on Monday and have been recovering at home since then.  It has been really painful, a lot more painful than my last hernia op, than in comparison was extremely simple. I feel like a punchbag, I am pretty much bed ridden and really struggling to do much at all.  I am feeling quite emotional and sad about it all, I think it is just the shock of everything happening so quickly, it is taking a bit of time for my head to catch up with the rest of me.

It’s all a bit sudden to be honest and has thrown things up in the air as I am due to start a new job and also because I am about to fly to India in a couple of weeks and so I was in a real panic going to surgery as I had no idea how it would affect these things.  But after talking with Timm, we are on it.  To be honest, it is good timing for the job, I’m not due to start till after my hols and so it means that it is done and dusted before work starts.

Regarding India, it is a bit scary.  If this were just a holiday, I would cancel.  But we are going to our family’s home town where they are honouring my grandfather who passed away this year in a football match and commemoration where we are scattering his ashes.  It is so important to me to attend and so I am fighting through.  Doctors are backing me on this as they understand how much it means and I am under instruction to wear surgical stockings, have daily blood thinning injections and a whole list of other things to keep me healthy.  We are getting a wheelchair to help me whilst we are away and Timm, my mum and the kids are all going to help support me too.

incisional hernia with ostomy surgery staples

So the next couple of weeks is all about rest and healing.  I am doing nothing other than concentrating on my health and getting fit and ready for what I hope is the start of a new chapter in my life.  The past three years have been so difficult, with surgeries, anxiety, illness, fatigue and depression, but now I feel I am turning a new page (ALLLLLL the cliches are coming out now!) and with a surgery to fix all the hernias done, my ileostomy settling in and a new job, I hope life is going to be brighter.

 

Thank you all so much for all your love, support and care

 

You are awesome

 

Sam xx