Big news! Nowt So Strange As Folk!

Some of you are listeners of my radio show on BBC Radio Sheffield, Nowt So Strange As Folk. I started last year and the past 6 months have been an absolute blast but now I have some big news!!

The show hosted by myself and co-host Leesh Desauzay is a modern family life show and we talk about everything from relationships, disability, food, kids and more and we love it so much!

Sam Cleasby BBC radio sheffield nowt so strange as folk

I’ve always been a talker! And I love chatting with people and hearing their wonderful stories and so being a radio presenter is just a dream come true.

And so I can’t believe that our Wednesday evening show is moving to Saturday mornings!

From Saturday 6th April, you’ll be able to listen in from 10-12 in the morning each week! Prime time baby!!!!

You can find us on BBC Radio Sheffield, online or on the BBC Sounds app, id love to hear what you think! Have a listen and get in touch – Nowt So Strange As Folk 

✌🏽& ❤️

Sam x

When illness gets in the way of intimacy – how do you make it work?

Who we are and how we feel about ourselves is based on so many different things and can alter, move and change depending on what we’re dealing with at any one time. Right now I feel that I’m a bit lost, I feel vulnerable and raw and in particular I feel I have lost my femininity and sex appeal. And by that I don’t meant how others view me but how I view myself. Feeling sexy feels like a thing of the past.

Sam Cleasby Sheffield blogger chronic illness hospital surgery

I’m generally very much changeable, equally comfortable in make up and sequins as in joggers and a jumper but more and more I find myself in those joggers and less and less making an effort due to illness, pain and fatigue.

Body positive?

In a world of body positivity, we know we’re all meant to love our bodies. But when our bodies are broken, causing pain, are fatigued and disfigured, sometimes I don’t love my body and actually the body positivity movement make it harder to voice that.

Currently my stomach is swollen, it has one large protrusion on one side and a smaller one on the other. I’ve gained a lot of weight because I can barely walk. Im in pain every single day. I hate how my body looks naked and none of my clothes fit me properly.

Its hard to say that though, especially as a blogger without feeling that you’re setting a bad example, not a good feminist, being negative about disability or perpetuating body stereotypes! Dude, sometimes I just want to say I don’t like how I look without it being about society! Sometimes I just want to be able to say I feel shit!

I end up in joggers most of the time because it’s the one thing that fits me and is comfortable. But it doesn’t make me happy, I know I look like a scruffy, fat mess most of the time. I’m so tired and so often I just wear a beany hat to cover how bad my hair looks and naps win over make up any day.

Feeling sexy

I used to feel sexy. And by this I don’t mean a pouty, booby show for others. I used to feel powerfully strong and beautiful and sexual and in control.

Right now I feel a million miles from that and honestly? It’s only going to get worse for a while with surgery and recovery. My body feels like it’s all about illness and treatment right now with no time or energy for looking good, for sex, for intimacy. But because I feel so different it’s like losing a part of yourself. Like feeling like someone completely different. Like you’re a stranger to yourself. And it can be hard to feel sexy, to give yourself to another person when you are not entirely sure who you are yourself!

It’s hard to feel ‘in the mood’ when you’re either in pain or stoned on painkillers, exhausted or asleep, when your body looks and feels weird to you or you’re wearing three different hernia belts! As they say in Hamilton, “It’s hard to have intercourse over four sets of corsets!”

ostomy photoshoot sexy ileostomy 50s pin up photo shoot so bad ass sam cleasby

Feeling lost

Joking aside, I just feel so lost. So sad. So empty today. I have a really physical reaction to upset, my stomach turns and flips and it’s doing cartwheels right now.

I wonder how I can be a partner to anyone in this state? How do you cope as the partner? Can relationships survive when illness gets in the way of intimacy? Is feeling sexy a possibility when you feel bad about your body?

I get lots of emails and messages about this subject and I know it’s sensitive and personal but I’d love to hear your experiences and thoughts.

Chronic illness changes many parts of our lives in so many different ways and sometimes it’s embarrassing and difficult to discuss those changes.

Ive had a message this week asking about this subject and I realised what a taboo it is to talk about how chronic illness can and does effect relationships, yet it must be something that so many are dealing with.

I hope this can spark a discussion that could help so many.

✌🏽 & ❤️

Sam xx

When everything sucks, build a den

I am struggling right now with pain and everything feels kind of in limbo as it feels like  there’s so little I can do other than wait for my surgery date. It’s getting me down and then that brilliant husband of mine just made it all a little better. I had the day off work as I’d swapped days with a colleague and so he decided to take the day off. And readers, he built me a den.

Gathering sheets and string and safety pins, candles and snacks and the telly, he built me a bed den for us to hide in all day and it was heaven!

Build a den in bed

Building a den

It was just what I needed, to turn my bed which had begun to feel like a bit of a negative place of illness and pain into the most perfect hideaway for the two of us. (Well two plus two dogs and all the kids who came to hang out throughout the day!)

It was a lovely thing to do but more than anything else, just having him to myself for the day was the best. We are both so busy, he is self employed (running a photography business, an arts company and a festival!) and is constantly on the go, always working and rarely has a day off. I work three days a week for Scope and also have a radio show once a week. We have three teenagers, two dogs, a cat and 4 chickens and fitting in a chronic illness that often throws all that schedule out the window makes life a bit manic at times.

And so to have a full day of being together with no work has been pure joy. Just hanging out, talking, laughing, watching TV, reading, kissing, having that rare time when it’s been me and him.

Sometimes we wish for big things, a bigger house, more money, flash holidays or fancy cars. Sometimes we get caught up in life, working, chores, paying the bills, scrambling around just trying to make everything that needs to happen, happen.

But sometimes all we need are the simplest things that bring us joy.

And that Cleasby brought me joy ❤️

You can watch the video here.

✌🏽& ❤️

Sam xx

I had my pre op!

This week I had my pre op assessment for my upcoming surgery. Pre ops are for when you’re having a general anaesthetic. You have a hospital appointment with a nurse to check if you’re fit enough for surgery.

They check your height, weight and blood pressure, take blood. Then they either take swabs to check for MRSA if you have your surgery date soon or send you home with a swab kit for you to do the week before surgery. It is an assessment to check whether you’re fit to have a general anaesthetic.

Its also an opportunity to discuss the surgery and any concerns you might have. As I’ve mentioned before my biggest fear at the minute is that I won’t receive proper pain relief after the surgery as this has happened to me twice before in this hospital.

After a big op like the one I’m having, I tend to have an epidural in place that delivers pain relief for the first few days after surgery. When this is taken down it can be a big shock to the system and good regular pain relief is a must.

My worries

Unfortunately twice now I have been left in agony due to the ward nurses not giving me appropriate drugs on time. Now I’m terrified it will happen again. So much so that I almost don’t want to have the surgery at all.

But I got time to speak to the nurse this week and share my fears. She told me that it was unacceptable that this had happened and that if it happened again, to immediately ask to see the matron who would sort it out and be majorly pissed off at nurses not doing their jobs.

As I’ve said so many times, I have huge respect for nurses and the vast majority are bloody wonderful! But there are some shockers.

Mind/Body connection

In a book I read this week (healing from the inside out, Nauman Naeem) it talks about how ‘good patients’ as in those who don’t speak up, press the buzzer, complain when needed are at much higher risk of complications and that rather than being a patient we should be a respant – a responsible participant.

The nurse also has arranged for the accute pain team to see me ASAP after surgery and has made notes for the anaesthetist to let them know how nervous I am and my past experience. She said they will be able to write me up for decent pain relief before they even consider taking the epidural down.

She has reiterated just how complex this surgery is going to be, around 7 hours in theatre and a high risk of complications. They have booked me into the post operative surgery unit (POSU) for straight after where they’ll keep a closer eye on me and if I need to be transferred to the High Dependency Unit they can do that quicker and more easily.

Feeling scared

I will need to be in hospital for at least 10 days and recovery will be 2-3 months.

They will be repairing the huge parastomal hernia, it’s a massive opening about 15cm and the incisional hernia on the other side and moving my stoma again. I have adhesions everywhere and so these may cause problems.

Its fair to say that I’m terrified.

Im trying very hard to stay positive, I have a new mantra (again from reading the book above) that I tell myself every day to fight against the feelings that everything is so tough right now and I hope that having more open and positive thoughts will aid in my healing.

“I am open and welcoming to healing, strength, love, joy and happiness”

✌🏽& ❤️

Sam xx

A day in my life

I thought I’d give you a glimpse into a day in my life when I’m presenting on the radio for the BBC.

If you don’t know me, I have an ileostomy because of Ulcerative Colitis and two hernias, I’m awaiting surgery to repair these and it’s going to be my 8th operation.

I’m struggling a lot with pain and fatigue and so it’s tough to be working right now but I’m plodding through and I love being on the radio so much! I talk about managing fatigue, counting spoons and weighing up whether I can take painkillers or drive a car.

You can watch a day in my life here.

You can find my usual weekly show Nowt So Strange As Folk here and the show I covered here.

Enjoy!

Sam x

It takes a village

That phrase “it takes a village to raise a child” has been going through my head a lot recently.

I love being a mum, it’s the most important role of my life and I hope to raise happy kids into happy adults, but as wonderful as parenting can be, it’s also really tough at times and I truly believe that to give the best to our kids, they need a village of people around them.

I was asked about what support my family have this week and when Timm and I thought about who we have around us who support us and the kids, it made us think.

Our village isn’t just about family but friends too. We are lucky to have our amazing friends Caroline and Jamie who have known our kids since being babies and love them dearly. We talked to the kids about how they are trusted adults who they can turn to if they need to talk to someone other than us.

And though my sister and brother in law live in Australia, we talked about how the kids can still turn to them too. The internet has made the world a lot smaller place and no matter where we are, we can still make that connection.

glastonbury perfect family parent blogger sam cleasby sheffield

It can sometimes feel as a parent that you have to have all the answers, and that’s just not possible. It’s ok to not be able to be all things at all times to our kids, it’s ok to need to rely on your village sometimes.

We talk to our kids about the trusted adults in our lives, about who they can talk to and who can be their support systems when they need it.

And it’s not always about a traumatic time, we should be having wonderful people in our lives who can inspire and excite our kids about different lives they can lead.

My friend Hannah is a real role model to my child Eli, from her travels around the world to her attitude, humour and character, Eli loves spending time with her and really looks up to her and I love that!

Friends in the LGBTQ+ community can give my gay child the support, information and experience that I just can’t. Our musician and creative friends offer perspectives that we just don’t have. We should draw on the experiences of the brilliant people in our lives to be inspirations to our kids too.

Families are so different today, we live far away from eachother and most of us don’t have that immediate local family support that used to be more of the norm in the past. But our friends can become our families and we all need to lean on others sometimes.

I feel lucky and grateful for the many wonderful people in my life and I love my village of people. From those we see often to those who are on the end of a phone or who we only see from time to time, it’s a proper blessing to know so many awesome folk.

And I suppose the biggest difficulty can be being brave enough to speak up, reach out and ask for help. It’s ok to not be able to do it all alone, it’s ok to need your village.

As much as I am so glad of the people in my life and the life of my kids, I hope that Timm and I can also be a positive impact in the lives of all our friends and their kids too.

✌🏽& ❤️

Sam xxx

 

Happy Valentines Day

I know lots of people don’t like Valentines Day, feeling it’s all a bit commercial or crappy if you aren’t in a relationship.

I could take it or leave it, I tell that husband of mine I love him every day and don’t need one particular day. But I also love a bit of joy and I like seeing so many posts full of romance and slush!

It also feels like a good day to big up my Cleasby, we’ve been together for 20 years now and our relationship has just got better and better over that time.

The past 6 years have properly kicked our arse, 7 surgeries and my reliance on him has just got more and more. My body has changed beyond recognition, losing my intestine and butt has been tough on my self esteem and has had a big effect on us.

But it’s also taught us about honesty, openness and talking about everything, especially the hard stuff.

There have been really tough conversations, those laying it all on the table talks, tears, hurt, anger, frustration but in the end, love.

Illness, surgeries, these life changing events can end relationships, it can all get too much and pull people apart. I feel extremely lucky that we have managed to draw together and find a new way to make our relationship work through the toughest of times.

Today we’ve had meetings, work and lots of stuff to do, but we’ve had dinner together at home and hung out watching tv and that’s the kind of valentines we like!

I know I’m so lucky to have this dude in my life for the past twenty years. Here’s to the next 20!

Happy Valentines Day to you all!

❤️

Sam xx

Supporting Someone With IBD: A Guide For Friends and Family

“Finding out that someone you care about has Crohn’s or Colitis is a shock. You might be feeling anxious about what comes next and how their life will be affected. Things will change – but the support of friends and family can make a huge difference in helping them live well with their condition.”

Crohn’s and Colitis UK have produced some information on how you can support someone with IBD and you might just recognise the couple on the guide!

crohns and colitis uk supporting someone with IBD

crohns and colitis uk supporting someone with IBD

I just want to dance

It’s been a busy week, work, radio show, hospital visits and finding out that my next surgery is going to be a tad more complex than I originally thought. I wrote about it in my last blog, so I won’t bore you again but basically, it is going to be a long op with an even longer recovery.

I am really struggling with pain, I take a lot of painkillers every day, spend a lot of time laid in bed and pretty much have a hot water bottle strapped to me at all times. There are a lot of things worrying me right now, but the main thing that is upsetting me is that I just want to dance.

I know this might sound stupid, I should be concerned about the upcoming op rather than having a boogie, but honestly, I’d give anything to just be able to have a full on, throwing myself about the room, bounce up and down, shake what your momma gave you dance. I’m a terrible dancer, but I love it, I enjoy having a good old boogie and I miss it!

I’m so fed up of the limitations of my body, the pain is constant, gnawing and just being stood upright for more than 10 minutes is really painful. I want to walk my dogs, I want to ride a bike, I want to go swimming, go to yoga, work in the allotment, but most of all I want to dance. I don’t care if it is in a club or a bar or just in my kitchen, I want to dance my heart out without feeling like my insides are going to burst out of my belly.

There are a lot of struggles when you have a chronic illness, the ulcerative colitis was debilitating for years and then I thought the ileostomy would be the answer to all my prayers. It has just been one thing after the other, going through j-pouch surgery and then 18 months of chronic pouchitis till I had to have it removed along with my butt hole was such a challenge. Now the past few years, my life is just taken over by the hernias and the pain.

Since September last year, when I got my newest parastomal hernia, life has been getting progressively harder. I now have two hernias, the parastomal one is huge and it’s a constant dragging pain, the smaller one is actually a lot less painful most of the time but then every now and then (if I cough, sneeze, strain) the hernia comes out and it’s like being stabbed.

sam cleasby sheffield blogger chronic illness

I can barely walk most days, sometimes I feel much better and I am able to walk a little and get out of bed but I know those days are followed by worse pain. This week, after hearing about how complex the operation is going to be and that I have a 75% chance of complications, I just thought ‘fuck it’. I have pushed myself and been out with friends for three days in a row, painful, exhausting and fuelled by painkillers, but I just wanted a little bit of normal, a bit of fun, just some time away from my bed.

I’m trying to not let this all get me too down. I mean, I am accepting it and being reasonable, but I have come off my antidepressants and so I am very aware of my mental health right now and monitoring if my sadness is within ‘normal’ ranges, if that makes sense. And so I can’t let myself sink, I need to keep my chin up and be accepting of my life but also keep positive for the future.

There are many things that keep me going when things are tough, my family, friends, work. But the one thing I keep thinking is that I am going to kick ass at this recovery, I’m going to follow the rules, rest, exercise, take time off work, no lifting etc blah blah blah and then this WILL BE a successful op, I will be totally sorted and by Christmas 2019 I will be dancing, arms in the air, ass shaking, wiggling hips and dancing my heart out and it will be all ok.

Because I have to try and think positively, even if inside I am terrified that things will go wrong and pissed off that this is what my life is like. I need to focus on something, and to be honest, there’s not much point in thinking too big, honestly, I will just be happy when I can dance again.

What is the one thing that if I could wave a magic wand right now, you would be able to do?

Sam xx

Good news and bad

Last week I had some good news from the gynae hospital.  I’ve had a large cyst on my ovary that been monitored for a few months, along with some worrying blood test results, there was a concern about ovarian cancer.

I’ve been given the all clear, the cyst had gone down, the blood test results a lot closer to normal so it’s all great news!

Then this week I met with my new surgeon Mr Adams, I’ve been referred to him by Mr Brown as he deals with more complex abdominal cases so Timm and I went to see him yesterday.

We looked at my scans and he went through my history and said that he would operate. This I was expecting, I have one large parastomal hernia and one hernia in my old stoma site so I knew that surgery was definitely on the cards.

What I wasn’t expecting was just how complicated and high risk it was going to be. Because of having so many surgeries, the multiple hernias and the sheer size of the parastomal hernia, he says it is going to be very complex and difficult.

I have a 75% chance of complications, this is really frightening.

Ill need a 1-2 week hospital stay and 2-3 months off work recovering.

I was in shock and had a bit of a cry, it’s all just a bit overwhelming and scary right now, I am terrified that I’ve used up all my luck and this is going to be the one where it all goes tits up.

Yesterday was a bit of a blur, I cried a lot, shouted at the sky, said it’s not fair. It all just feels very real now, and hearing those odds of things going wrong has put the fear in me. Though I can reduce that by 10% by stopping smoking or going onto e-cigarettes so yesterday was my last fag and today I have a big stupid vape thingy!! But needs must!

Today I’m a bit less emotional, certainly less weepy. But deep down I’m just scared.

The thing is that it’s not the surgery itself that scares me the most, it’s the recovery and the fear of more god awful nurses who won’t follow instructions and give me the planned pain relief. The last hospital stay was a nightmare with two of the most uncaring, horrible nurses I’ve ever met who left me in agony for over an hour after my epidural was switched off (you can read about it here.)

Whenever I think about surgery, it’s this moment I’m taken back to, this feeling of panic, pain and the complete free fall of no control and I panic. My chest tightens, I can’t catch my breath, my head spins and I feel like I’m right back there. I’m so scared!

And so the thought of having 2 weeks in hospital, potential complications, a big old cut in my belly, potentially another stoma move and then months of not being able to work, of needing so much rest, it’s just too much.

Because I had two surgeries last year (and a handy mental breakdown) I have no more paid sick leave left at work and so although they are really supportive, financially it’s a worry.

Timm says that whatever we need to do, we will, that he’ll look after me, to forget the money, that we will get through it together, that he’ll be with me every step and won’t leave hospital till he knows pain relief is sorted.

I also know we have some wonderful friends who will be right by our side and so that makes me smile.

But all in all, this is a bad time, I paste the smile on but underneath I’m absolutely done in, scared, weepy and upset.

Will update when I’m feeling brighter

✌🏽& ❤️

Sam xx