I am doing an event on Facebook premiere with Clinimed about helpful hints and advice for looking after your stoma. I am joined by a ostomy product specialist and a stoma care nurse to answer all your questions about life with a stoma.
Join us on Thursday 15th July at 10.30am on Facebook.
Sam xx
I’m due to have a big surgery on 30th April and I’ve been told I will need 2-3months off work. Obviously this is pretty stressful and I’ve been spending time creating my handover document. Advice to give to my manager and colleagues so my work will still go on whilst I’m off.
Writing all this down has actually reduced my stress levels, I’d been feeling pretty upset as I love my job and a big part of it is managing volunteers. The thought of my volunteers not getting support was getting to me but writing all the tasks down on paper made me realise that it will be fine and other people will be there to do the jobs I can’t.
And so I started to write a handover document for home! Not that my husband is stupid and can’t do all the household chores but I thought it would reduce my worries of how life is going to continue with me in hospital for two weeks and then laid up in bed recovering.
Its nothing mind blowing, but the jobs I do that Timm and the kids don’t. Cleaning the condenser on the tumble dryer, cleaning the oven, things in the allotment. Also things like advice on doctors and dentist appointments, kids plans with friends, house and family tasks.
But it got me thinking about what advice and guidance we leave behind when we die. (Sorry, that got morbid quickly!!!)
What words of wisdom, what thoughts and hopes and dreams, what would you want your loved ones to know if you died suddenly? How would your handover document for life look? Is there advice would you give? Here’s my advice.
Success is not how much money you have in the bank; success is living a happy and fulfilled life surrounded by people you love and who love you.
Time is so valuable, so spend your time with the people who make you happy, doing the things that bring you joy. It’s so easy to lose hours, days, weeks on things that aren’t joyful, some things we just have to suck up and get through, I don’t find joy in cleaning the loo but I am happier in a clean home. But the time you do have, use it wisely.
Make the time for the things that make you happy, this is about those day to day events that make you relaxed and happy, for me it’s dinner with friends, reading, gardening, sewing, my kids, my husband, watching a movie with someone I love. I know work is important but it’s not more important than friends and family.
Be kind. Kindness is the most powerful thing in the world. Give love, kindness and care to those around you. Not just people you know but to strangers. Try and think the best of others rather than falling into negative assumptions. Think about other people, their needs, their struggles and if you can help, help.
If something or someone makes you smile, tell them. Tell your colleague how great you think they are, tell that stranger on the train that you love their boots, tell your kids they are awesome, tell your partner you appreciate them, tell your friend how special they are to you.
Travel as much as you can. Going to new places broadens your mind, opens you up to new opportunities and teaches you more than you can ever know. This doesn’t have to be far flung destinations (though I do love visiting new countries!) but it could be your own country, even your own city!
When you get into an argument with your partner, remember that you have the same goal, to resolve it and be happy. Even if you have totally opposing views, even when you both feel hurt, what you both want is for the argument to end and for things to be sorted. It’s easy to fall into negativity and wanting to be right, to “win”, even if this means you say something hurtful. Stop, breathe and think before you speak. Words hurt and are hard to take back.
If you stand for nothing, what’ll you fall for? Stand up for things that are important to you and for people who need your support. If you have privilege then use it to stand alongside those who don’t. Stand up against racism, sexism, hate and oppression.
Tell the people you love that you love them. You may think that they know you love them and they probably do! But give it a voice, tell your kids you love them every day. Don’t forget about your friends! Think about how nice it feels to be told you are loved and give that gift to someone else.
Make sure your partner knows that they are the most important and brilliant person in your life. It’s easy to take the people closest to you for granted, but let them know how much you love them.
Listen to music, read books, go to the theatre, go see some art. Creativity is what sets us apart from animals and it brings so much joy.
Follow your heart, is there something you’ve always wanted to do? Maybe you think it’s daft, beyond your reach or even have been told you’ll never be able to do it. Give it a go! I was told by my English teacher that I’d never be a writer, that people like me can’t write, yet here I am with a blog that’s been read over 3 million times! Ok, I’ve never written a book yet, but I’m going to keep trying!
Get outdoors. Nature, fresh air and being outdoors is so beneficial for your physical and mental health. Get outside whenever you can.
Be silly. Don’t be so serious, enjoy the ridiculous things in life. Laugh, giggle, sing, dance, do whatever makes you smile.
If you are struggling, reach out and ask for help. When times are hard don’t be afraid to ask for support, whether that’s friends and family or a doctor, support service or charity. Don’t suffer alone.
Whether it’s physical health or mental health, when you’re facing challenges it can be so tough. Over the past 6 years I have dealt with so many surgeries, so much pain, depression, anxiety and feeling totally overwhelmed and that it was all too much. I understand how hard it can be. But I also know that going through life challenges has also changed me in so many good ways and has made me a kinder, tougher, more empathetic person. Whatever life throws at you, learn from it and use it.
Be the best person you can be, life is short and we never know what is around the corner, so make your life the best it can be, do the things that make you happy, be kind, show love, try your hardest and find the joy no matter how difficult.
If you had a handover document for life, what would it be, what advice would you give?
✌?& ❤️
Sam xx
My husband is one of those bloody annoying people who always seem to be a high achiever, you know those gits who just do well in everything they try? When we met he was working in the music industry as a sound engineer, he went on to work for some amazing bands and then to be the tour manager for Arctic Monkeys, he won Tour Manager of the Year before having a change of career. He then became a photographer and now is renowned for his amazing talent and runs (with his pretty awesome wife) The Picture Foundry.
He wanted to ‘keep his hand in’ the music industry and so years ago became involved with Tramlines, he is now the production director and helps to run Sheffield’s biggest festival.
One night he went to the pub with his mate James and together they came up with an idea for an arts group that was about nature, play and upcycled fun… Five years later, their company Responsible Fishing UK just got their SECOND year’s contract at the UK’s biggest holiday camp taking the brilliant project Camp Cardboard to inspire young people to be creative and families to spend time together and play.
Do you hate him yet? Only kidding!
The reality is that he deserves every triumph he gets. He does all this with a kind hearted energy, fun and a great attitude. He does all this because he sets goals, aims high and goes for it. He is without doubt, the hardest working person I know and has the most self belief I have ever seen in a person!
My lighthearted dig at Timm is a joke, but it does show the side of humanity that seem to want to hate on the people who achieve in life and that’s what todays post is about.
When I got really ill in 2013 and had the surgery to remove my colon, I felt like my life was over. I couldn’t see how the path I thought I was going to take could be an option to me now. I was scared, anxious and fed up. After having a massive cry and slowly learning to adapt, I did what we Cleasbys do best. I sat down, thought of what I wanted and set my mind to making it happen.
We are by nature ‘doers’, Timm calls me itchy feet as I am always looking for the next move, the next adventure. We always have a plan for the next year and then a long term plan, sometimes these change and move, but it makes me feel better to have an idea of where we want to go and also keeps us, as a couple, on the same page.
Because of my illness, I have been better with the planning than the action for the past few years, and before that my plans were raising three young children whilst Timm was away on tour. We had three kids in four and a half years and he was touring for nine months of the year and so you can probably imagine that my planning revolved around the whirlwind of semi single parenting!
But now things are starting to look up for me health wise (let’s not talk about my surgery on Saturday, eh?!) and my bambinos are getting that little bit older. I know they still need us an awful lot but at 10, 12 and 14 they are so much more independent. This is giving me more time to think about what I want.
I know what I want. But voicing it is where I falter. I worry that people will mock me, laugh at me or think I am too big for my boots. We British love an underdog and don’t tend to like the confident, outspoken extroverts that shout about their goals, which is funny as Americans sometimes seem to be the opposite. The american dream makes it ok to say ‘I want to be the best’ whilst the Brits look you up and down and wonder who you think you are!
But I am going to take a leaf out of my husband’s book. He believes in setting goals and aiming high, then getting that shit done. This isn’t about being a bitch or a hard faced business man, it isn’t about The Apprentice who show high achievers as being pretty much the worst people on Earth. It is about remembering that life is short and we are only here once.
Not everyone wants to be a CEO, a brain surgeon, a millionaire… success isn’t about money. But we should all be thinking about what do we really, really want in life. Whether that is to spend more quality time with family, to travel the world, to go back to university, to learn to tango, to speak another language…
Or to write a book…
Since I was a child, I have loved to write. I always wanted to be a writer but not going to college or University felt like a huge barrier to me becoming a writer. Having babies at 19, 21 and 23 didn’t help my confidence either. I’m always scared some super clever academic type will laugh me down if I speak the words ‘I want to write’, yet here I am writing this blog that is read all over the world.
And so I am aiming high. I am writing a book, it is a continuation of this blog with parts of my story, the lessons I have learnt and a self help element for people to conquer their difficulties and be happier, more confident and more fulfilled.
I feel like a bit of a dick writing this down but sod it. I want to write a best seller, I want to travel the world and maybe live for a while in Sydney near by big sis, I want to earn enough money to support Timm for a while, as his goals include playing more in the woods with James and sexing up motorbikes, I want to make a difference to people worldwide, I want to leave a legacy that will outlive my rotten bowels and chronic illness. I want to be on Oprah FFS!
Are these goals too high? Yeah, probably. But my retched colon nearly took my life and so why shouldn’t I aim for the stars? What is the worst that can happen? Timm and I have a motto that we would rather regret the things we have done, than the things we have not. I would rather put myself out there and try to write a book and it fail miserably than to spend my life thinking ‘what if’.
Aiming low and expecting little is a terrible option. If you never strive for more, how will you achieve? Again, this isn’t about money, it is about assessing your priorities and thinking about what you want. We all have to work and so shouldn’t we aim to work in a job that makes us happy? We all want to spend more time with the great people in our lives, yet often end up putting it off due to other commitments. But if you make that a priority and voice it as your aim, you are more likely to do it.
I’d like to ask you a question… If I was your fairy godmother and could wave a magic wand right now and you could have one personal wish granted, what would it be? I’m not talking about world peace, end to hunger or those things that we all would like to happen. But if I could put you in a different situation, what would that look like?
Would it be a change of career, a change of destination, a better relationship with someone in your life?
Whatever that something is, ask yourself, what is stopping you from striving for that?
Make lists, set goals, aim high, think big.
You have one life and only you can make it what you want it to be.
Five years ago Timm and I set a goal for him to stop touring and to start a photography business, it was terrifying walking away from a good wage packet but we knew that his touring was making us all unhappy. We made plans, worked hard, had some EPIC struggles but we managed it and we are now happier than ever. Eighteen months ago, after a chat with the marvellous Faye at Keep Your Fork, I set a goal to start writing a blog about my experiences, it was a great way for me to start writing, today I sit here with a worldwide audience and well over 2 million views.
Some days, my illness and fatigue means that my plans are much smaller, I plan to shower, to do a couple of hours work, to watch a film with my kids. These days aren’t failures, they are my tiny triumphs on a longer path to what I want in the future.
I am right at the start of my journey with this book and want to thank everyone who has sent their love and support. It is pretty scary but knowing how much good I have done with my blog pushes me forward and makes me want to write something amazing that can make a real difference.
So this week, think about want you want from life.
Think big, aim high and be happy.
Sam xxx
So you have just been diagnosed with Ulcerative Colitis… Now what? Well you are probably a bit shell shocked and confused as to what the hell this disease is. You are frantically googling and recoiling in horror at the words ‘increased risk of cancer’ and your mind is boggling with all the different treatment options. I know this feeling, as this was me over ten years ago.
I had been losing a lot of blood and had bouts of diarrhoea but as my daughter was only 9 months old I thought it was probably piles. But it got worse and worse till I was losing so much blood, the toilet bowl looked like a massacre had taken place. I ended up passing out, I was so anaemic and dehydrated from the bleeding and diarrhoea and then taken by ambulance to the hospital, after a lot of tests I was eventually diagnosed with Ulcerative Colitis.
I was given a prescription and sent on my (not so) merry way feeling completely adrift and unsure as to what I was facing. Initially I was happy as I thought it was going to be a diagnosis of cancer, but suddenly I had to learn about this disease that has no cure and that would affect me forever. I was devastated.
Over the next few years, I slowly learnt more and more about the different drugs, the side effects, the flare ups and remission periods. I eventually discovered the support of IBD nurses and learnt that I had to take control of my illness, I had to learn how to adapt my meds according to how I felt. It was a very difficult task, before this point if I had ever been ill, I would go to the GP, get a diagnosis, a prescription, take the pills for a set time and then get better. Suddenly I was told to self manage my illness, to know to up the dose of some drugs at certain times, to know when to call for help and when I should just deal with it. It was a frightening and confusing time.
The biggest change for me was discovering that the hospital had an IBD nurse. This took a few years as I discovered three years in that I wasn’t even under the care of the gastro team at the hospital! (But that is a WHOLE other story). As a sufferer of IBD (either Crohns Disease or Ulcerative Colitis) in the UK you should have access to a specialised IBD nurse. This is someone who you can see regularly, have phone contact with and who is there to support you through your illness. The team at my hospital became a lifeline, a friendly voice on the end of the line when I was confused and needed support or advice. I am amazed at how many people I speak to that do not know they can see a specialised nurse!
I know you are facing this terrifying time, but you have to take control. You have to educate yourself, find out as much as you can and be your own advocate so you can ensure you are getting the best treatment. It is easy for patients to get lost in the system, the NHS is amazing, but it has it’s issues due to the pressures put onto it and so you must make sure you are playing your part and not being a bystander in your own health.
All the different medication options are mind boggling, it is so confusing to know what is the best course of action. Take advice from your doctors, registrars and consultants, listen to your IBD nurse, but do your own research too. Do not be afraid to ask questions, it is OK to be unsure and to remind medical staff that they may deal with this every day, but for you it is new and overwhelming.
If you are unhappy with your care, you can ask for a second opinion. Simply go to your GP and talk through your options, after ten years under one hospital and feeling many times that I was unhappy with my care, I decided to move hospitals. It was the best decision I made and under the new teams at a different hospital I am so happy. I feel supported, informed and cared for.
When I was first diagnosed, I had never heard of the disease let alone know anyone who had it, there was little online and I felt so isolated and alone. I was embarrassed to talk to my friends and family about it as I didn’t feel comfortable telling them about my bum, blood and shit! (Oh, how times have changed, eh?!)
At times of flare ups I would lock myself away, not go out or visit friends. On one occasion when I ventured out to a friends house during a flare, I stood up from her dining table after having a coffee to see that I had bled so much that it had gone through my clothes and onto her furniture. I was absolutely mortified. How could I tell her that blood from my arse had leaked onto her (thankfully plastic) chairs? Instead I covered it with my bag, grabbed some cleaning wipes from her kitchen side and said I had spilt my tea. Then I left.
Remembering this event now, I still feel flame cheeked and filled with embarrassment. I went home in floods of tears, vowing never to go out during a flare again.
I later spoke to the friend, who thought she had upset me as I left so suddenly, I admitted what had happened and she was so warm and kind, she hugged me and reminded me she was a mum too and was used to dealing with body fluids. She made me promise that if it ever happened again, that I would just tell her and that it just wasn’t a big deal. She reminded me that I had once cleaned up her sick after a bit of a crazy night out and let me know that all those things I was worrying about, that she would be disgusted, or would laugh, or that she would not want me round, that they were in my head and she was my friend and would always be there for me.
My main message in this post is that you need to speak out, you need to talk to someone about your illness. The biggest symptoms of IBD in my opinion are shame, embarrassment and isolation. I swear that talking to your loved ones will help, they are feeling as bewildered by your diagnosis as you are and probably feel upset, worried and useless. You have to learn about your illness so you can help your loved ones understand too.
There are some amazing websites about now with so much information, as well as lots of blogs and youtube channels, Facebook groups and people like me who will openly talk about life with IBD. Utilise these options for information and support, you are not alone, there are almost 300,000 people in the UK with IBD and 5 million worldwide. I know it feels like your world has ended, that the life you thought you were going to lead has gone, but I can tell you this, you ARE NOT ALONE. There are many out there feeling the same as you and you can learn to LIVE with IBD, it might change your path but it does not end it.
Take a look at charity Crohns and Colitis UK, a great source of advice, information and support and also check Facebook groups, forums and blogs for support. One friendly hint is to remember that the ill people are mainly the ones talking online, the fit and healthy ones are off living their lives, so just be mindful that forums are not the best overview of the IBD population!
I know you see many stories, mine included, that talk about surgery, ostomy bags and all many of scary things. Around 1 in 4 people with Ulcerative Colitise will need some form of surgery (more with Crohn’s disease) and so it is an issue, but do remember that 3/4 of people with UC will not have surgery and will be managed with medication. Whatever path you have to go down, living with a chronic illness such as UC is a lifelong issue. It will change some aspects of your life but this diagnosis isn’t the end, it is just a change. You can still lead a wonderful, full and happy life, I know it can feel, especially during a flare, that your illness feels all consuming and that it takes over every aspect of your life, but stay strong.
I have been writing about life with Ulcerative Colitis since 2013 and so do take a look through the site, specifically this post of the A – Z of IBD that has some good information and take a look at the So Bad Ass Facebook page and twitter page to chat with other people with IBD.
You can always contact me if you want to chat privately, but please remember that Im not medically trained and so my advice is always anecdotal and from personal experience, if you have any urgent medical issue, you should ALWAYS speak to your doctor or nurse and NEVER just take advice from the internet!
Love Sam x