Love for those who love us – young carers

Today is my baby Thom’s birthday, though he’s hardly a baby any more! He is 14 and taller than I am!

He is a funny, caring, sensitive, artistic and bright lad who will always be my baby even when he’s a big man.

Today though I thought I’d talk about our kids who are young carers.

My three children have lived with my illness for as long as they can remember, they’ve never had a “well” mummy. Their lives have only known a mummy who has to run to the toilet in a supermarket grabbing them by the arms to run with her, abandoning a trolley in the aisle.

They would bring their drawings and toys and sit outside the bathroom chatting to me as I tried not to cry out in pain on the loo bleeding.

They knew how to microwave a wheat pillow to bring to me when I was in pain and make a hot water bottle as they got older.

Theyve spent more time visiting in a hospital than any child should. Knowing sometimes they can wear sick bowls as hats and make me laugh and sometimes they can only sit quietly and hold my hand.

children and chronic illness ibd surgery

Theyve lived through the stresses of money being tight because I couldn’t work and dad working overtime to make sure we’re ok.

Theyve pushed me in wheelchairs never showing embarrassment but only arguing on who gets to push.

Theyve cried and shouted and screamed because it’s all not fucking fair. They’ve held brave smiles in front of me when they’ve been scared of seeing me hurt.

Theyve sat on my bed, eyes shadowed and voice low asking “mum, what can I do to make it better?”

Theyve had all these experiences that break my heart, things I wish I could take back and replace with a normal happy childhood where you don’t burst into tears when your mum goes to the GP because you’re so scared it means she’ll end up in hospital again.

family visit hospital

But you know, they’ve also learnt empathy well beyond their years. They have skills that many other teens don’t, they can cook and clean, they can do the shopping and collect prescriptions, run baths and aren’t embarrassed to help mum wash her hair.

They are the most emotionally intelligent young people, in tune with their emotions and able to read other people’s. They know how to share how they feel and that there is no shame in crying, no fear of shouting.

They know they can tell me anything, that I’ll listen and be there. Even though being there often means them coming to me, they’ll get in my bed with me and spend hours telling me about their days, their troubles, their joys.

They know the kindness of loved ones, we have friends around us who have not only been there for me and Timm, but for the kids. Who have taken them on the days out they miss when I’m ill (even when they lose them K and R!!! ? ), they know they have a safe space with our friends where they can go and just be kids. They see the dishes of food that turn up after every surgery and the extra hands that come to clean up and do laundry.

They know they are loved beyond mum and dad and that our friends adore them and will always provide them with a shoulder to cry on, an ear to listen and a place in their hearts.

My kids have tough times that I wish weren’t caused by me and my illness. But in many ways it has brought us closer together, we love eachother fiercely and it often feels like it’s us vs the world. We have so much to deal with but we are stronger for it.

kids visiting sick mums in hospital

There are an estimated 700,000 young carers between 5 and 17 in the UK and the statistics scare me.

  • It can affect a young person’s health, social life and self-confidence.
  • Many young carers struggle to juggle their education and caring which can cause pressure and stress.
  • In a survey, 39% said that nobody in their school was aware of their caring role.
  • 26% have been bullied at school because of their caring role.
  • 1 in 20 miss school because of their caring role.

Though Carers Trust also say:

“Some young people don’t experience any problems and can experience a big sense of pride and a sense of achievement. But if they don’t get the right support – which is often the case – it can leave them feeling stressed and worried. It can lead to them not having life chances that other young people do.”

I just hope that I can love and support my kids as much as they do me and between us we can get through this together. I feel so much guilt for the pressures they live with. They say it takes a village to raise a child and though our village is a bit wonky, it is filled with friendship, love and laughter and I think that’s not too bad.

SheffieldYoungCarers are a charity dedicated to supporting young carers in our city, they are amazing and if you can offer any support to them through donations, your money will be spent looking after those who are looking after us.


✌? & ❤️

Sam xxx

Never trust your fears, they do not know your strengths

Last year in August, my dreams came true when I was invited to present a show on BBC Radio Sheffield. For the past few months Nowt So Strange As Folk has been going out on a Wednesday evening from 7-9pm and it’s been an absolute joy!

Then at Christmas last year, I was called into see the boss along with my copresenter, after panicking we were going to be told off, we were asked if we’d like to stand in for the mid morning presenter whilst she was on holiday! We said yes immediately but over the past few weeks, doubts have been creeping in.

Those fears, insecurities and that nasty voice in my head that tells me I’m not good enough have been poking and whispering to me that I’m not good enough to do it.

What if I messed it all up? What if everyone laughed at me? What if she actually meant to ask someone else and it’s all a big accident and then I turn up and she says “what are you doing here?! Of COURSE I didn’t mean you!!

I know I come across as a confident person, but believe me, these are the internal conversations I have most days!!!

But if I’ve learnt one thing over the past five years and seven surgeries, it is not to trust those fears.

I have been so fearful over my life, heading into surgery after surgery, losing my bowel and learning to live with an ostomy bag, having surgeries that didn’t work, being in HDU and spending weeks on end in hospital and months on end recovering. There have been times when the fears became too much, when they shattered my confidence and broke down my mental health.

There have been times when it all felt like too much, when I didn’t know if I was able to carry on. When it took everything I had just to get out of bed in the morning.

Yet here I am. Still standing. Still smiling. Still living.

And so I have learnt not to trust those fears, because they did not know my strengths.

And this week I have been on BBC radio on one of their most popular shows, I have presented for 3 hours a day, I’ve interviewed some amazing people including comedian Lucy Porter, ABC singer Martin Fry and the Sheffield branch leader of the Women’s Equality Party Charlotte Mead.

Ive had to learn new skills and how to go to news, travel and weather (with the fabulous Owain Wyn Evans!) It’s been challenging and at times scary but honestly it’s been the most brilliant experience and I feel so blessed and honoured to have done it.

Doing five shows this week plus our usual Wednesday evening show has been exhausting. I also had to rejig my work hours at Scope and work afternoons PLUS Timm and Thom came down with the gross sickness bug that has been going round. It has been a really tough week, one that at times I thought might be too much for me.

But I made it through! And it has been the most amazing experience. And more than that it has taught me yet again that I can’t trust the fears and need to remember that I have more strength than I know.

You can catch up on the mid morning shows here, check out the dates from the 14th to 18th January and you can listen to Nowt So Strange As Folk here.

✌?& ❤️

Sam xxx

Health update

I thought I would give a bit of a health update as I feel like I am just constantly complaining on social media about how grim I feel.

I have two large hernias (I know, I know, I’m as sick of hearing that word as you are!), one is a parastomal hernia, this means it is sat right behind my stoma and one is an incisional hernia in one of my many surgery sites.  The parastomal one is the most painful, it is quite large and gets bigger throughout the day.  It is a constant feeling of pressure behind it and it feels like all my insides are going to burst out at any minute! The second hernia is not painful all the time, but a few times a day it is an awful stabbing pain, it takes my breath away and so between the two I am really struggling with pain.  I’m on codeine and nefapam for the pain which help but also make me super groggy.

The other issue is I have a large ovarian cyst, at the last CT it had grown and was around 7cm big, I am having weird periods (long gaps and random bleeds) and a feeling like constant bad period pain.  I also apparently have a large, fluid filled fallopian tube (because why not throw another thing at me!!) and so I am waiting for further scans and tests for this.  I think it is due to the huge amount of adhesions in my body, basically everything is stuck together and altogether unhappy in there.

So the plan is for the gynae surgeon to take out the cyst at the same time as they fix my hernias if possible. Mr Brown wants to get another surgeon involved, he specialises in complex abdominal cases and I have an appointment to see him at the beginning of February.

And so I am just still in limbo waiting for a surgery plan and date. On one hand, it just cant come soon enough, I am getting to the point where the pain is getting too much, my nerves are shred and every ounce of patience has been used up.  I am short tempered, pissed off and struggling to not lose my shit.

Talking of losing my shit, the parastomal hernia is making my stomach a very weird shape and so bags are not wanting to stay put, so I am leaking really often which is just making life all the crappier.  This is my parastomal hernia, the pic was taken after a day of rest and so is actually not as big as it usually is.

parastomal hernia

Most days I look about 6 months pregnant and so that’s not much fun at all…

I dropped my work days down to three days a week a couple of months ago as I was finding it so hard to keep up with everything whilst feeling so ill, exhausted and in pain every day.  This has helped a lot, but to be honest, even part time work is a real struggle right now.

Also because I had two surgeries last year and subsequent time off to recover, I am out of paid sick days so I am panicking about how much time I will need off after this next op. If it goes to plan and they do the two surgeries in one go, it will be a big old op and I will need a lot of time off afterwards to allow myself to heal. But I also won’t be paid for this time.  Of course, my health has to come first and I will take as much time as I need and the doctors recommend but adding the financial worry to the mix isn’t helping.

And so I think that is everything up to date health wise. Basically my body is broken and I’m waiting to see if docs can make life a bit less shit!

I know I have been a right whinging bag on facebook and twitter, but honestly I don’t even apologise for it! Life with chronic illness isn’t all positive quotes over images of clouds, it’s not all high fives for celebrating our awesomeness and shiny, happy selfies with puppy noses.  Sometimes it is dark and miserable, lonely and scary and the one thing I promised myself over 5 years ago when I started this blog was that I would be honest about the highs and the lows.

Thank you so much for all the kind, lovely messages I have received over the past few weeks, I try my best to reply to everyone but don’t always have the energy, but I do read them all and each one means the world, so thank you.

Sam xx

Too poorly to party

Drawn Poorly is a Manchester based arts and community project, providing a platform for creatives responding to chronic illness, disability and mental health. 

The project aims to address the widespread isolation felt with these conditions, encouraging open conversation and reducing stigma. 

For their first birthday, they decided to create a series of stickers and cards about being too poorly or too tired to make it to all those social occasions that we often miss out on and they kindly sent me some. They came at a perfect time when I had missed a few nights out and dinners through being just too exhausted and in pain.


too poorly to party poorlydrawn zine

too tired to party

You can find them on Instagram and on Twitter and see some of the wonderful art and projects they have on right now.


Sam xx