2016 – a year in review!

I started this year with two hopes, no surgeries and no house moves.  I did both! Two massive ops and one house move!  I thought it only right to have a look back at how 2016 treated me, to be honest, it wasn’t great, there were some extremely dark and sad times, but there were also moments of pure joy.  So here we go…


I started 2016 in a bad way, I had had chronic pouchitis on and off for over a year and I was so drained and fed up, I talked about it in my post about what chronic illness is really like.  That was all to change quite suddenly though when it was decided to remove my pouch and create a permanent ileostomy on 4th January.  I had my jpouch, rectum and anus removed and my new stoma formed, it was a TOUGH surgery and I came round feeling battered, bruised and done in.

Then just weeks afterwards came the shock death of my grandfather.  The whole family was devastated and I had to deal with the funeral and mourning period whilst being in a very difficult recovery.  All in all, January was shit.

ileostomy bag stoma ostomy permanent ostomy after jpouch removal



February was all about recovery, and celebrating that The Plug nightclub in Sheffield raised lots of money for Crohns and Colitis UK in my name!  I went shopping for clothes that fit with my ostomy and felt a bit down around my difficult recovery and also had phantom rectum!

clothes and ostomy ileostomy colostomy fashion


In March, I wrote a letter to my babies that still makes me cry, it was about how proud I was of how they had dealt with my illness and surgeries. It was an emotional month and I think all the stress on my mind and body were stirring up a lot of old feelings, I decided to write about a time in my childhood when I was groomed and faced sexual assault.  It was scary to write about but I was really proud to speak out, I went on BBC radio and was in Red magazine and I got so many brave and beautiful messages afterwards from women thanking me for talking about it.

I also wrote about my wonderful best friend and reviewed #ToyLikeMe toys that represent disabled children and also Sea Sponge tampons!  Oh, and we moved house!!

sam cleasby caroline hayes


April was an exciting month, my sister, brother in law and nice visited us from Australia and I couldn’t have been happier!

I also reviewed the Riksack which ended in me going on This Morning and sitting on the sofa with Phil and Holly! An absolute highlight of my career!!!

I wrote a really popular post about why I show off my ostomy bag after reading some negative comments about people who choose to show photos of themselves online with the ostomy bag on show and Timm and I attended the Get Your Belly Out ball which was amazing!!

this morning ostomy colostomy ileostomy sam cleasby so bad ass

get your belly out ball sam cleasby



I took part in the GirlGang photography project #SeeMySelfie which was lots of fun.  I also found out that I had not one, but TWO hernias and would have to face yet more surgery, I was absolutely devastated.

I shared the videos that I had been in for Opus Healthcare about ostomy care, and reviewed the brilliant Vanilla Blush ostomy underwear. I went on Sheffield Live TV again and went on BBC Sheffield sharing My Life So Far with Rony Robinson.

sam cleasby girl gang sheffield see my selfie



In June, the past 6 months of surgeries, loss, recovery, hernias and tough times caught up with me and I finally spoke honestly about how I was feeling and my mental health.  I had been having anxiety attacks and very low moods for months and I was finally ready to speak out about it.

June also saw my birthday, I have always wanted a surprise party, and Timm has always said that I would never have one because I always ask for it! But this year, he got me! It was wonderful fun and really lifted my spirits in what otherwise was a dark month.

sam cleasby surprise party sheffield blogger


I didn’t blog in July, I wasn’t great mentally and decided to put my time into family and friends.  I spent a lot of time in the allotment, went to a few gigs that my son’s band Goathead played and also enjoyed Tramlines.

I worked away with Responsible Fishing doing their Camp Cardboard project and generally tried my best to just get through each day.  It wasn’t a great time but I tried to make the most of it.

sam cleasby sheffield blogger


I went on holiday to Cheddar with Timm and the kids in August and had a great week camping.  It was the summer holidays, so I spent lots of time with the kids and Timm, going for walks, picnics, days out and more and after weeks off, I returned to blogging.

Lots more time in the allotment, I found it really therapeutic to be outdoors, working in the ground and growing lots of amazing fruits and veggies, I was struggling mentally and this helped me a lot. I was also struggling with my hernias that were getting larger, more painful and a lot more difficult to cope with.


sam cleasby chicken keeping allotments kiveton sheffield



In September, I celebrated my 3 year no coloniversary! Three years since I had my colon removed and my first ostomy formed.  It was also my son’s 16th birthday which was brilliant!

I went and did some work for Good Morning Britain which was super exciting! I went around the London underground with a Transport for London badge for people with invisible disabilities to see if people would offer me a seat whilst they did some secret filming! Lots of fun!!

recreating old family photos

Then at the end of September after weeks of terrible pain and struggles to cope, I ended up in A&E with my hernias.  I suddenly got agonising pain in the stomach and my hernia in my belly button got stuck through my tummy.  After 2 days in hospital, I was taken in for a 5 1/2 hour surgery that opened me up and reconstructed the walls of my stomach, moved muscles and added pig skin mesh and medical mesh to fix the holes and damage to my abdomen.  I was devastated to have more surgery and the recovery was extremely painful and difficult.  But I was going to have to cope as October was meant to be the month of our big trip to India!



I had no idea if I would be well enough to travel to India, we had booked everything and the thought of cancelling and losing so much money was scary, but more upsetting was that the trip was to celebrate the life of my Grandpa and to spread his ashes.  I decided that I would do everything I could to go.

So THREE WEEKS after surgery, I went to India.

Even now, I can’t believe I did it.  I was in lots of pain for the whole trip, had to use a wheelchair for the first two weeks and struggled with my new ostomy in the heat.  It was probably the hardest three weeks I have faced for a long time, feeling absolutely terrible but also having the enormous pressure of wanting Timm, my mum and the kids to have a great time.  I desperately didn’t want to spoil it for anyone else.

Even though it was so hard, it was also an amazing time and I am glad we went. Brave or stupid? I am still not entirely sure, but I know that being at the memorial football match for my grandpa with 24 family members and seeing his ashes being spread on the football pitch he had played on 60 years ago was a beautiful and special moment that I am so glad I made it to.

india taj mahal agra in a wheelchair

I also enjoyed the absolute honour of becoming a Community Champion for Crohns and Colitis UK, they say:

“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 crohns and colitis uk community champion



We were in India till mid November travelling to Delhi, Goa and Mizoram and we had the most wonderful time, it really was a trip of a lifetime!  I struggled with my health but we managed to muddle through.  In Goa, my stoma retracted right back into my body and so my bags wouldn’t stick properly, this was a nightmare as it meant I was leaking everywhere and my skin became so raw and painful.  One afternoon, Timm made a bed for me on the balcony,  I was really sad to be stuck in bed and struggling with bags and so I asked him to help me get settled outside so I would at least have an amazing view…

sam cleasby stoma goa india ostomy heat holidays ileostomy bag

We came home from India to even more exciting news, I had applied for a job with Scope and I was thrilled to get it!  I was a little worried about how I would cope with work and recovery but so far, though it is tough, I am doing well!

I look after the online community for Scope and I am absolutely LOVING it, it is such a great opportunity to offer support to disabled people and their families all over the UK.  I love the work I do with my blog and I just feel that my job at Scope is an extension of this.  It is tough, I am still recovering from the surgeries and I do struggle with fatigue from my illness, I take a lot of medication still and there are times when it is really quite tough to get through the days.  I have to have a nap during my lunch breaks but I think you just do what you need to, to get through your days when you have a chronic illness.  But so far, I love my job and feel so lucky to have this opportunity and to be able to work from home.


In December, I have been working hard, dealing with recovery and enjoying family time.  Christmas has been a lovely and quiet time, just the five of us.

Over on my Facebook page, I asked people to share what they would pack to go into hospital for ostomy surgery to help others who are in that position and then shared the results on the blog.  It got such a brilliant response and I am so proud to have such a wonderful bunch of readers and followers!

I also decided to create a 360 photography project about IBD called #MyDailyIBD where I take a photo a day to create a diary of my life with IBD.  I have encouraged others to take part and I hope it will be a lovely way for us all to raise awareness of IBD.

December also was tinged with sadness, a few years ago, I met a man online called Darrell Henry on a jpouch support group and instantly connected with him.  He had cancer and was hilarious, strong willed, inspiring and an all round awesome fella.  We started messaging and became friends through our shared lack of a colon and dark sense of humour and though we never met, he was a big part of my life and taught me so much.

Darrell passed away in December and so I have to dedicate this whole post to him.  Rest in Peace my handsome pal!

darrell henry


So there we go! My 2016 in brief… I had to pick just a few things from each month and so I know I have missed so much out but I hope you enjoyed reading through my year.

It has been a shitty year all round really, so many well known faces passing away, Brexit, Trump and personally, it was a really difficult year with two huge surgeries and the subsequent recovery.  I have been in pain pretty much all year, I haven’t had a full night’s sleep for as long as I can remember, I have struggled with my mental health, lost my grandfather, had family problems, lost a friend and generally had a pretty shit time.  I am sick and tired of being sick and tired.

But I have to stay positive and think of the great things that have happened this year too, our holidays, a new home, a new job, brilliantly funny and wonderful nights out with friends, the opportunities I have had to be on TV and radio and so many moments of quiet happiness, little things like date nights with my husband, hugs with the kids, walks with the dogs, my allotment and many more.

So my hopes for 2017? I don’t want to make any resolutions but I am hoping that for the first year in the past 3, that I won’t have to have any surgeries!!

I really hope that the coming year will bring me recovery and health.  And despite everything, hope is one thing that I must keep strong.


Happy New Year bad asses, I hope you have a good one!



What to pack when going into hospital for ostomy surgery

Over on my Facebook page, Natalie got in touch saying she will be going in to hospital for ostomy surgery soon and it got me thinking about what you need to pack when going in to hospital.  I mean, we all know about the usual toiletries etc but I decided to ask my lovely readers what they would recommend to anyone going in for surgery for a colostomy or ileostomy, and man, they took it and ran! I got some amazing replies, over 70 in total and so I thought I would collate them all for a comprehensive list of what to pack when going in to hospital for ostomy surgery.


Hospital checklist

Lots of nightwear and underwear, more than you think you’ll need just incase of leaks or spills whilst you’re learning how to change your bags.

Baby wipes – Nicola

Room spray air freshener

Body lotion –  you dehydrate so fast in hospital – Vicky

An eye mask and ear plugs

Take a small pillow to squeeze whenever you need to cough, sneeze or laugh following surgery, it helps hold your stitches together and makes it hurt much less – Jaime

Jelly sweets, boiled sweets, salted crackers, hand cream & diluting juice. I liked having a little snack with me. Couldn’t eat much but found these little things handy, even through the night sometimes! – Jennie

Ear plugs or headphones are a must and slipper socks with rubbery bits on the bottom – Zoe

I took some poo pourri in because I had to measure my stoma output and it made the smell more bearable – Sue

Always salted crisps for me after surgery… my body craves salt at those points! – Nicola

Marshmallows to thicken liquid output before bag changes – Kate

Nightshirts that button up rather than pull over (if you’re having open surgery) – Amy

I took my own pillow and my iPad full of books – Sharyn

Slippers that are easily slipped on and off – bending down isn’t an option for a while. Dry shampoo, baby wipes, books, oversized PJs or nightie (so no pressure on tum) and large, plain cotton, high waisted undies that come up to at least the belly button – supportive and no extra pressure – Emma

A mirror to see stoma in full when bag changing, learning shape and how to clean properly etc – Kate

A nice scented body butter (just not anywhere near the bag seal haha) hair bobbles, baby wipes, dry shampoo, stuff to freshen you up and make you feel nice. And magazines/kindle to keep your mind busy – Katie

Warm socks, my feet always get really cold in hospital  – LT

Shorts and track bottoms and t-shirts as they’re loose and comfortable especially after a nice shower nice warm slippers as hospitals are pretty draughty hence cold floors, basic hygiene stuff shower gel, deodorant etc,and bio oil to treat the scars for improved healing – Kevin

I took one of my lovely feather pillows from home it really helped with sleeping – Vicky

Something that reminds you of home or comfort item such as a blanket, soft toy or photos. Having major surgury is tough, especially ostomy surgury. So having something with you during this tough time to help comfort you between visiting times and through the extremely long days and nights – Robyn

Jelly babies, lots to read, lovely clean big knickers, and lots of nighties. A bag you can keep everything in close by, you can’t move about much at first. Nice smellies, clean flannels – Carol

Lip balm for after surgery, moisturiser for hands and feet, baby wipes, make up wipes, maternity V shape pillow and a big comfy dressing gown along with some headphones to help you zone out the noise from the ward!! – Charlotte

Bed socks as they never tuck in the bottom of the sheets for sensible reasons and your tootsies get cold – Anthea

A picture of my family, warm socks, nail file – Katja

Comfy pjs maybe a size bigger than normal, leaves extra room for any drains etc and easy on a tender tummy. An ipod full of lovely music, tv, films & podcasts. Those little bottles of concentrated squash (the ones where you put a couple of drops in a glass). Your fave jumper or cardigan. Trashy mags with puzzles in. A pen. Wipes. Make up to make you feel better. Photos of loved ones. Any keepsake that makes you smile – Julia

Snacks hospital food is a bit hit and miss – Vicky

Flip flops for the shower! sometimes gastro ward showers can be a bit grim – Joanne

Antibacterial hand wash for changing and emptying your bag if you are confined to your bed at first, mouthwash, a pen – Nicola

Lucozade Sport or Powerade – Shell

I always bring my vitamins, protein and fiber. I know what works for my body. – Amelia

Drinking straws in case you can’t sit up to drink, chap stick, bonjela (I had terrible ulcers from the diet/drugs), if you have a tablet get some music, films and simple games on there, you may not have wifi – Dan

A sense of humour – Nicola

Beanie for bad hair days, good headphones, mint tea – Winny

Pink and white marshmallows & jelly babies are always a must for me when I go in!! Marvellous for ‘firming up’ ya poop, especially ileostomy poop!  – Claire


Petroleum jelly! Soft pants and big sanitary towels – Kirsty

Headphones for phone/tablet/tv if you’ll have a roommate. A notebook or preferred memo app for logging medication info, questions, output – Regan

A scarf covered in your favourite perfume – Frankie

I took my straighteners and hair dryer in because the first time I had surgery I looked like the pigeon lady from Home Alone! Plenty of cash, these places aren’t cheap when the shop trolley comes round and you fancy watching some tv. Oh and decent luggage because guaranteed you’ll go home with more stuff than what you went in with! It’s also easier to pack when you get moved wards etc. Heat packs are also good for back pain etc – Donna

An extension cord or portable phone charger for when you can’t reach the plugs – Alice

Face wipes. I wasn’t wearing make up but it felt so refreshing to wash my face – Lee

Lavender hand cream and a little bag of lavender to mask the hospital smell – Liz

Dry shampoo. Phone charger. I couldn’t focus to read but I could scroll through Instagram or Pinterest. Also stretchyand bigger than normal clothes to wear home. There will be bloating and swelling. The last thing you want is anything restrictive. – Lee

Baggy shirts, sweatshirts & PJs, dark colored at first – Susan

If it’s a woman and she is taking birth control pills – she should pack some pads. If she isn’t well enough to take her pill she will get her period after a few days of missed birth control – Brandi

Post Op j pouch ileostomy ibd surgery sheffield sam cleasby so bad ass

Thank you so much to everyone who replied, you can see the whole thread here!

I hope this is helpful to anyone facing surgery any time soon, I know it is scary but all these little things will make it that bit easier and it is so great that they all come from people who have been there and understand what you are going through.

Sam xx



How to cope when your child isn’t heterosexual 

So recently, our daughter told us that she has a girlfriend and so I thought I’d do a little post about how to cope with this news.

I’m kidding, coping means dealing with a difficult situation. I don’t need to cope with this, it just is and it makes no difference at all to our relationship!

My daughter is an awesome human being, she is kind, caring, funny, intelligent, curious, exciting, passionate, loving, brave, beautiful and a total badass warrior queen.  She makes me so happy and proud for all of these reasons and so her relationships bear no relevance to how I feel about her.

All I have ever wanted is for my children to be happy.  And my role in her coming out is to ensure that she knows that we love and support her in all that she does.

We’ve talked a lot, she’s very open and honest with us and so we give her the same respect back. I have told her that as a heterosexual woman, I can’t know how she feels, but that I am willing to listen, learn and support.  I ask questions, I hear her answers and tell her that though I may not know the answer to any questions she might have, that I can damn sure try to find out.

I told her that as her mum, I hope she can always come to me, but if she feels she can’t, we can talk about adults who she can trust and speak to in privacy.

Has it changed anything? Certainly not in our relationship apart from me realising that she is growing up and dating.  Does it change anything for me personally? I suppose I feel more sensitive to comments I hear about sexuality and homophobia. I have lots of LGBTQ+ friends and would stand up with them against prejudice but it’s probably made me more aware of that prejudice.

when your child is pansexual

It made me check my privilege and realise that my sexuality isn’t questioned by others. That I never worry about holding hands with my partner or showing affection in public. It makes me realise that my sexuality is never an issue for people or up for discussion.

I suppose I do feel slightly more protective to her, I want to be able to shield and defend her from any comments that will upset her.

Some responses I have had, or others have told me about have been:

“It’s a difficult life she will have now”

“Oh, but you’ll never have a big white wedding for her”

“Is it a phase?”

“What about grandchildren?”

“She’s very young to make these choices”

I find these all pretty bonkers.  The wedding and children ones make zero sense. Firstly, I never assumed that she would marry or have children, she may choose not to do either whatever gender her partner is.  And those are things that can happen whoever she is with!

“Is it a phase?” She has told us she is pansexual, this means you are attracted to the person, not the gender. So she may date men, women or transgender men or women in the future. She says she doesn’t know what her future holds but she doesn’t want to rule anything out.  So if by phase, you mean, could she date men in the future, the answer is yes. If you mean, is she trying something new, the answer is yes, this is new.  It makes me uncomfortable for others to question her motives, it’s kind of none of your business.

“It’s a difficult life she will have.” Fuck, life IS difficult! But I’m fairly certain it is more difficult to live a life where you hide your true feelings.  Could she face prejudice in her life. Of course. She’s a woman. It’s going to happen regardless of who she dates.  Does adding pansexuality to the mix mean she could face more prejudice? Yes. But that really is society’s issue and not her burden to bear.

“She’s very young to make these choices” Sexuality isn’t a choice. I never made a conscious decision to be straight, it’s just who I am and it’s the same for her. She isn’t making choices, she is expressing her feelings.

when your child is pansexual

As a half Indian, disabled, working class woman, I have had my fair share of prejudice and it’s not a nice feeling to know others are judging you on aspects of yourself that you have no control over and the same goes for my daughter and her sexuality.

Are you allowed your opinion? Of course! But I’ll warn you now, never bring a negative opinion about this onto my child. Because I’ll go mama bear on your ass and it won’t be pretty…

The only genuine advice I would give to any parents who have recently found out their child is LGBTQ+ is to be open, genuine and accept that you may not be the only person your child needs right now, get googling, there are support groups for kids who may want to talk, my daughter is going to an LGBTQ+ youth club.  Also remember that this isn’t about you.  It’s about them so make them the centre of your thoughts and feelings.

I think something my daughter has appreciated is that we are asking her questions, she’s the only expert of how she is feeling and so I am treating her as such.  In doing this, we can show her that we accept, appreciate and listen to her and that we know we can learn from her.

I am very proud of her, she is a fantastic person and always has been, her passion for learning, kindness of spirit and beautiful soul have ensured that pride.  Yet now Pride has a capital letter in our relationship because her pansexuality is something that changes nothing between us, yet is a huge part of who she is.

So here’s to my daughter, my wonderful, hilarious, intelligent, pansexual queen of a daughter.
Sam xx 

#MyDailyIBD – a 365 photography project for IBD Awareness

As we approach a new year, I came up with a fun little project that I thought might help share our IBD stories and raise awareness while we go.  I love photography, it is so special what we can emote in one image and so I thought I would begin #MyDailyIBD.

The idea is that you take one photo a day that shares an element of your IBD life relating to a specific topic.  Each month, I will share a board with the topic of the day and you can take a photo and share on social media (instagram, twitter, Facebook, pinterest).

You can be as literal or as creative as you like!  Using the hashtag #MyDailyIBD and tagging me in means others can look at your images and you can see what other people are sharing too.

This is meant to be a fun project that anyone can get involved in and by this time next year, you will have a photo diary of your IBD life.

IBD is often seen as an ’embarrassing illness’, the poop factor makes people feel uncomfortable talking about it.  My aim with this blog has always been to raise awareness, to #StopPooBeingTaboo and to let the 5 million people worldwide with IBD that they aren’t alone.  This project encapsulates all of those ideas and I hope it will be a positive and helpful project.

Don’t worry if you miss a day, just pick up on the next day and carry on.


#mydailyibd sam cleasby sobadass



Each day take a look and share an image that relates to that date of the month, so on the 1st January, we will start with a New Year Selfie, share on whichever form of social media you like, use the hashtag #MyDailyIBD and #NewYearSelfie and then enjoy looking at what other people are sharing.

This might work really well, or be a huge flop! Either way, I will be doing this for a personal collection of photos of my year, so even if you choose not to take part, you can peruse my photos on Instagram, Twitter, Facebook and Pinterest.

I hope you will get involved and share the idea far and wide and we can get people talking about IBD.


Love Sam xx

Can we get this amazing song to Christmas number one?

Have you heard of the Everly Pregnant Brothers? They are a ridiculously funny and brilliant band from Sheffield who play ukulele puntastic covers of modern classics and if you haven’t heard of them, I hope by Christmas day, you will have as they have released their hilarious cover of Sex on Fire by Kings of Leon, Chip Pan on Fire with South Yorkshire Fire and Rescue to raise money for Shelter and Age UK to protect the elderly and vulnerable in their homes.

I first came across Everly Pregnant Brothers at Tramlines festival where they played at a tiny, riverside pub and took over the whole area with thousands of people hanging off railings to see them play.  With classics such as Pork Pie (Parklike), No Oven No Pie (No Woman, No cry) and Sheffield Calling (you get the drift, right?) they are a Sheffield staple and quickly became a firm favourite in the So Bad Ass household.  We bought all their albums and attended lots of their gigs for silly, funny and wonderfully Sheffield lols.

sam cleasby so bad ass every pregnant brothers tramlines

And so when I saw they were releasing this charity single for Christmas, it put a smile on my face.  How fab, I thought, that’ll raise a few quid and more of my friends can fall in love with them.  They started selling well, then it got serious, they were on TV on The Last Leg where they got a standing ovation, in the media and filling my Facebook and twitter feed, bloody hell, could they actually make it? A group of middle aged men playing ukuleles, not taking themselves or life too seriously, could they actually become the light at the end of the shitty tunnel that 2016 has been?

I became friends with Big Shaun (their singer) after a while, we would bump into each other at Tramlines and as anyone in Sheffield knows, EVERYONE KNOWS EVERYONE, so it was obvious that we would have mutual buddies.  I saw him put out a call on Facebook for musicians to play at a one off charity night with him to raise money for the victims of sexual grooming and exploitation in South Yorkshire and shyly got in touch, offering the services of my then 14 year old bass playing son.  He didn’t have much experience, not much more than a few gigs at school and so I fully expected to be politely turned down.

But I don’t think Big Shaun does turning people down, he has a big heart and a love of music and community and so he took my lad under his wing and welcomed him into the gang.  Weeks of rehearsals followed, each one with me collecting Charlie from a room full of musicians apologising for any swear words they may have taught my lad that week, and then came the gig where they kicked arse and raised lots of money for a worthy cause.  They also inspired my boy to have a love of old music, to realise that he could do this and to give his musical confidence a huge boost.  And for that, I will always be truly grateful.

everly pregnant brothers photo by timm Cleasby photography

Photo by Timm Cleasby Photography

And so here comes the science bit, can you afford to buy this single for 99p and not only be raising money for great charities but getting this wonderful band to Christmas number 1?

If you are still in doubt, here are a few reasons why you should…

  1. Ukuleles are flipping cool.
  2. Raising money for Shelter and Age UK.  Do it for the older people and those struggling with housing problems.
  3. 2016 has seen us lose so many musical geniuses, David Bowie would want you to buy this.
  4. You could piss off Simon Cowell and keep another x factor conveyer belt, cookie cutter singer off the number one spot.
  5. The video was shot with zero budget, these guys have no big marketing team and millions of pounds behind them, it’s just some Sheffielders doing what they love and playing tiiiiinnnnny guitars.
  6. It will put a smile on your face, guaranteed.
  7. All the cool kids are doing it.
  8. Sheffield is basically the centre of the universe and it is only right that we host the xmas number one.
  9. Wooooaaahhhhhhhhhhhh my chip pan’s on fire.  Best. Lyric. Ever
  10. Because I am asking you reallllly nicely.

Come on lovely readers, stick your hand in your virtual pocket and fork out 99p to make my year!


Sam xxx

Working and chronic illness

For the past three years since I started on this whole surgery journey and things took such a toll, I have been self employed. I have been a freelance writer that’s funded the growth of this blog. I’ve also been extremely supported by my husband, both emotionally and financially. As a self employed person, when you don’t work, you don’t get paid, therefore for the 5 surgeries, subsequent recoveries and hospital stays, without the support of Timm, we couldn’t have afforded to live. 

I applied for PIP, asking for support and was flatly refused. The process was so stressful that I couldn’t even bring myself to appeal. It was really difficult, embarrassing and pretty humiliating, so to then get the response that I scored ZERO was heartbreaking.  That’s right, the PIP folk say I have no extra needs than anyone else. I felt like emptying my bag on their desk and asking them what needs they then had…

The fact I have a life long chronic illness meant nothing, the pain, joint problems, fatigue, anxiety, ostomy, dependency on my husband, the raw bleeding skin, ulcers, the leaks, the planning it takes to leave the house, the dietary issues, the exhaustion, the medication, all of it meant nothing and they said I wasn’t entitled to a thing.  This meant money has been tight and till very recently, I just didn’t feel capable of taking on any other work. 

But now I have a new job for Scope as the digital community officer and I LOVE IT! But the reality is that I can only do this job because they support me in working from home.  So how’s it going? Well, I love the job! Working full time is a huge shock to the system and it’s taking its toll on me. 

I finish work and I’m so thoroughly shattered that I’m in bed by 7pm!  On bad days (which has been every day this week) I have used my lunch hour to sleep.  I’m still figuring it all out but I’m sure I will get there. Timm has had to take up a much bigger role in childcare and running the house as I simply can’t do it all. 

It’s a lot to take on but I’m happy I have done it, I almost feel like this job is part of my recovery process. It is helping my self esteem and confidence massively and reducing my feelings of guilt that have plagued me for years of illness where I’ve felt I had to rely almost entirely on Timm. 

Working from home is ideal for me, I couldn’t cope with working in an office. I still have leaks and stoma issues and the privacy of working from home means the embarrassment factor is reduced hugely and the logistics of dealing my bag is so much easier here.  It also means that on a very bad day I don’t need to worry too much about my physical appearance. When I’m struggling, it’s hard enough just to get up in the morning let alone having to make myself presentable for others! 

Emotionally, it’s been a rollercoaster but I’m nearly  a month in and I’m feeling lots more confident.  My anxiety feels more under control and my self esteem is really boosted. After so long of needing my husband to provide for us all, it feels amazing to be a breadwinner! 

This is obviously only my experience, everyone is different and I don’t judge people who don’t or can’t work or work out of the home.  I feel really lucky in finding this opportunity that works for me but I know working from home just isn’t an option for some people. 

So my top tips for working with chronic illness? This is what has worked for me:

Seek out opportunities, they are out there even if they’re few and far between and it might be a struggle. 

Ask for support whilst looking for work. The government website is a good place to start. You could try talking to a Disability Employment Officer

Once you have a job, speak to your employer about your needs.  Whatever your physical or learning disability, you have a right to equality, fairness, respect and understanding at your workplace  under the Equality Act 2010. 

Listen to your body, what does it need? Right now I need rest and comfort and so I have a hot water bottle to hand, plenty of fluids and I do power nap at lunch which sets me up for a great afternoon working. Only you know what you need. 

You can’t do everything.  I did the lions share of housework, but now I work full time, I ask for help from my husband and kids and I got a cleaner. Yes, a cleaner is a luxury, but it is the best £20 a week I spend as it reduces my work load and stress levels. I know it’s not affordable for everyone but I would rather go without other luxuries and use that money for something that really helps me out. 

Prioritise your time. Adding work into your life means other things will fall by the wayside.  Prioritise the important stuff. 

Be open with your employer and let them know your limitations. Offer solutions to the issues you may face and ask for help. 

Rest when you need to. I have fatigue, so I know that when I’m not working, rest is a fuel for my health. 

If you don’t know it, search it. We all have access to all the information in the world! There’s a ton of info and support out there, if you have thought of the question, it’s likely that others have too. Use the internet for research and help. 

If you’re interested in my new role, you can take a look at the Scope Community.  Register and join in on hundreds of posts, questions and comments and a community of disabled people and the families and carers of disabled people now! 
Sam x