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

 

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

 

 

Living with chronic pain

I hope you’ve all had a lovely Christmas, it’s been a pretty quiet one in the Cleasby household which has suited us just fine. We’ve had a few visitors but it’s been mainly just the five of us and lots of chilled days watching movies, playing games, eating cheese and ham and family time, so all in all it’s been a good one!

I was unwell on Christmas Day, I do t know whether it was a tummy bug or something I’d eaten, but I was up almost all Christmas Eve on the loo and spent the day very tired, poorly and done in. But as we had a quiet day at home planned, it didn’t really ruin anything. I couldn’t eat and spent most of the day laid on the sofa, but I had Timm and the kids with me so it was still a nice day.

Christmas Chronic Illness

And it got me thinking about how whenyou have a chronic illness, you really learn to live with an almost constant feeling of being unwell. I find it hard to explain to people how I have been in pain every day for the past six months, every single day.

I take two types of strong painkillers every day just to get through the day. And living with that sort of pain then becomes the norm. It’s a really shit norm, but it is the life I have.

I have two hernias, one parastomal hernia behind my stoma and one incisional hernia at a previous surgery site. They open up and my insides push outwards any time I’m not laying flat on my back and they hurt! The pressure is a constant dragging pain and then there’s also sharp pains as they go in and out.

I also have a 6.5cm cyst on my ovary and just found out that my Fallopian tube is also inflamed, swollen and filled with fluid. These hurt too, it’s a gnawing, aching pain in my groin all the time. My stomach is so swollen that I look 6 months pregnant, everything is so tender.

Due to the 7 surgeries in the past 5 years, I have a crazy amount of adhesions, basically all my insides are stuck together now, I have so many bits of mesh and pig skin holding my stomach muscles together that everything twangs and aches and stabs.

And I’ll be honest, it’s getting me down.

I haven’t walked my dogs for months. I’m in agony for days if I try to do anything more than sitting. We went to the cinema and shopping on Boxing Day and I spent 2 days recovering. I have to hire mobility scooters to go to shopping centres as I can’t walk far without feeling like my insides are going to burst out of my stomach Alien style.

But what I find really hard is that it’s so tough to explain it. I am waiting a surgery date but doctors feel that if I’m taking painkillers everyday that I’m ok to wait. And because I try my damnedest to keep on doing normal stuff, I can understand that people think I’m ok.

But im so fed up, I’m so tired of it all. I wake up every day knowing that the minute I get out of bed, the pain will start and though I’m stoned off my tits on codiene and nefapam through the day, it’s a constant thing.

If I really want to do something, I forego the pain relief so I’m not dozy and sleepy but that means the pain is even worse. It’s a constant balancing act of whether I take drugs and lay still or try and have somewhat of a normal life and do it in pain.

I know this is a pretty miserable post but I really wanted to try and explain what life is like when you live in pain every day.

Not many people can understand it, but think about a time when you were in pain, maybe you had a knee sprain or a horrid ear infection, perhaps you had an awful stomach bug, now try and think about how you’d feel if there was no end in sight to that pain, if that pain was your normal base level every day.

If im grumpy, absent minded, blank or ignore you or your texts or phone calls, please know it’s not personal. If we chat and I can’t remember the word I’m trying to use or just plain forget what I’m saying, know I’m really trying my best. If I cancel on our plans or just wont commit to them in the first place, know that it’s not that I don’t want to, it’s just too much to cope with right now.

Please just know that I’m trying my best

✌🏽& ❤️

Sam x