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

If you stand for nothing, what’ll you fall for?

There’s a line in the amazing Hamilton that says “if you stand for nothing, what’ll you fall for?” and it always sticks with me when I face the nasty internet comments for the work I do to raise awareness of life with an ostomy bag and chronic illness.

Because though I feel that I am only trying to put good into the world, I still get nasty comments and messages about my looks, my body, my morals and my blog.

I stand up and I make my voice heard, I hope to inspire anyone living with chronic illness to know they are worthy, they are valid and they matter. I share my story about my own illness, my own trials and tribulations so that others know they aren’t alone.

If you stand for nothing what’ll you fall for?

And sometimes that causes others to become so angry that they take the time to type out comments such as:

”This is disgusting, put it away”

”You think you’re a model but you’re gross” (I corrected the spelling on this one!

”You’re an attention seeker”

”Is nothing private any more, why would you tell people about this?”

I also get the odd ones that just call me a fat slag, but hey, we can talk about those another time!

So what do I stand for? I stand for every person who isn’t able to speak up for themselves, who are struggling to get through each day. For those living with incurable, debilitating and life long illnesses that affect them every single day.

I stand for myself, I speak my mind and share my journey through the toughest years of my life in the hope that some good will come out of it. That my story can help others.

I stand for love and kindness and hope.

I stand for the hope of a world of equality and understanding, where every person, whatever their impairment had the ability to live the life they choose.

And if I have to fall for these things, then I’ll do so with a full heart knowing I did my best.

✌🏽& ❤️

Sam xx

CEA cards – free tickets for a friend to come with you to the cinema

Did you know about the CEA card? It is a national card scheme developed for UK cinemas by the UK Cinema Association.

The Card enables a disabled cinema guest to receive a complimentary ticket for someone to go with them when they visit a participating cinema.

A complimentary ticket is provided on the assumption that the person accompanying the Cardholder is able to provide appropriate assistance. Illustrative, but not exhaustive, examples of such assistance might include having the ability to assist the Cardholder in:

  • Moving around the venue including finding and taking a seat;
  • Evacuating the venue in the event of an emergency;
  • Accompanying and/or assisting the cardholder in using the cinema’s washrooms; or
  • Purchasing refreshments.

People who receive one of the following benefits are eligible for the CEA Card:

  • Disability Living Allowance (DLA);
  • Attendance Allowance (AA);
  • Blind Persons Registration;
  • Personal Independence Payment (PIP); and
  • Armed Forces Independence Payment (AFIP).
  • Cardholders must be 8 years of age or older.

You can apply online or download the form and do it by post and it costs £6.

You can read more about it on the CEA website

 

✌🏽& ❤️

Sam

Hospital update and feeling anxious and panicky

I saw Mr Brown yesterday and the plan is for yet another surgery, it will be in the new year.

I have two large hernias and they are causing daily, almost constant pain. One is behind my stoma and one is in the old stoma site.

I also have a 6.6cm cyst on my ovary that I’m not sure if it’s causing pain or not as my whole abdomen hurts so who knows what is what.

Mr Brown wants to bring a new surgeon in to work with him, he specialises in complex abdominal problems and due to having so many surgeries, I’m filled with adhesions and scar tissue.

Theyll also be working alongside a gynae surgeon to remove the cyst and possibly my ovary, so it’s all hands on deck!

I just feel sick that this is happening yet again, I’ve really had enough and honestly it doesn’t get any easier, every surgery gets tougher and tougher. Ignorance is bliss when it comes to knowing what recovery is like and I’m so anxious and scared.

Ive used up all my sick pay with having two surgeries this year so any time off work will be unpaid which is super stressful, I know I need time to recover but knowing it will effect our income adds more pressure.

Im writing this at 4am as I can’t sleep for worry. I’m also coming down with some bug as I’m hot and cold and coughing and feel crap but when you have a chronic illness sometimes it feels like you can’t take time off for “normal” illnesses.

I know I’m just having a middle of the night panic but everything just feels very overwhelming right now.

I just want to be well.

Im sick of being in constant pain, it’s so draining. I’m sick of taking painkillers every day though I’m relieved to get some better pain relief today from the GP. But it’s a constant weighing up of being in pain and being able to think straight and taking drugs and feeling dizzy and not with it.

Its the first time since I started working for Scope when I’m actually wondering whether I can cope with it all. I love my job but right now it’s causing me to worry. I worry about how my illness affects my team, I worry about whether I can cope and I worry that if I don’t work, whether we can afford to live the life we do.

Theres not much positivity in this post but as always, it really does help me to be able to blurt all this out here so thanks for reading and I hope that in speaking about the tough times, it helps others to know they’re not alone.

I hope things feel a little brighter when the sun comes up

 

✌🏽& ❤️

Sam x

Girls like me don’t get to be Mary…

I remember the nativities at school, year after year, yearning to be Mary. It’s what I thought about all year. To be fair, I went to a catholic primary school where the head teacher was a nun so you know, there was a lot of bible talk all year round.

But I really wanted to be Mary. I imagined myself doing the slow walk alongside the donkey and Joseph with a tea towel on his head. The pillow up my dress looking holy and ready to birth the baby Jesus.

I knew blue was a good colour on me, and they’re in Bethlehem!! I’m the right colour surely!!!

Yet year after year, I was never Mary. And year after year I was devastated. I remember crying to the teacher one year when yet another blonde, pale girl was chosen to be the Virgin Queen. And I’ll never forget the words “girls like you will never be Mary”

My heart broke that day, I sat on the tiny toilet behind the stall door that ironically was half mast like a barn door and wept. I went home that night and prayed that God would make my skin lighter and my hair blonde.

Because even in those early years, I learnt that girls like me whose skin is brown and hair is black aren’t beautiful queens who get to have the pillow baby Jesus.

Worry not, I have since learnt that I’m amazing and I feel no shame at all of my Indian Mizo heritage. Dudes, I celebrate what a queen I am all the time!

One year i did get to play an elephant tamer.  But the outfit had these ridiculous see through harreem pants and you could see my knickers and everyone laughed at me. It wasn’t my finest moment and I cried because no one ever laughed at Mary.

Nish Kumar (NOT Patel!) wrote recently about unconscious bias after a newspaper called him Nish Pateland it made me think about the times when bias has affected my life.

I talked to friends recently about how I’m “just white enough” to get to hear everyday racism. Not the full blown racists who hate anyone who isn’t white but those friendly every day racists who would never accept it about themselves because they have a friend who is black.

A woman I stood next to at a craft fair all day before at the end she said she would have a “Chinky” that night. The person who says they’re going to the “paki shop”. The ones who tell me that it’s not fair how much the “coloureds” and “foreigns” get the same benefits as the “real British people” aka white people.

It happens all the time. And every time it reminds me of being told as an eager 6 year old that girls like me never get to play Mary.

Your words matter. Think before you speak.

✌🏽& ❤️

Sam xx

I’m 37 and just figured out what I want to be when I grow up!

We ask kids all the time what do they want to be when they grow up, they may answer astronaut or doctor or teacher and some of they may mean it! We ask again when they’re about to choose their GCSE options, the lucky ones will have an aim and know which road they’re heading down.

But for so many of us, we have no clue! Or we have a million ideas but struggle to know which one is right.

When I was younger I wanted to be a midwife though my dream was to be a writer but I didn’t think someone like me could ever do that. I didn’t feel very suppported in making decisions and certainly university was never suggested as an option for me.

I worked for a telesales company, in a bingo hall, in a restaurant and a clothes shop but I was living in and out of the family home, on friends sofas, with my sisters, my aunty, in a shared house and a brief stint in a terrifying flat alone and so life was tough. I started a-levels twice but honestly, it was tough to concentrate on studies when I was working and had zero money and often was just fucking hungry!

I met Timm and then two years later we had our first baby together, for the first time I felt settled and like I had achieved something (even though I was judged for being a mum at 19). I stopped working to be a stay at home mum and then we had Eli two years later and Thom two years after that.

baby hendersons hendos sheffield

I absolutely adored being a stay at home mum and though sometimes it was tough, I revelled in it and I was damn good at it! When Thom was 2 I decided to train as a masseuse, odd choice maybe but I went with it and really enjoyed it. I worked in a salon and also at festivals providing massage for the bands and singers backstage. I had an absolute blast doing this but I knew it wasn’t my forever job.

I then trained as a doula which was amazing and also worked as a breast feeding support worker. This was such a brilliant and special time and I really loved it. Unfortunately I started with a flare up of Ulcerative Colitis and couldn’t get it under control. I found it very tough to carry on working whilst basically shitting myself a few times a day. Work wasn’t supportive and told me I needed to manage my time better…

In 2010 Timm decided to stop touring, he was a tour manager for arctic monkeys but was away for 9-10 months a year and life was pretty tough. He wanted to go back to his former love of photography and so we set up Timm Cleasby Photography and I worked with him on the marketing side of the business. I took my love of working with babies and even did a few baby photo shoots of my own.

Then everything went tits up in 2013 when I started with the worst flare up of Colitis I’d ever had. After 9 months of medication and being in and out of hospital I had surgery to remove my large intestine and got my first stoma.

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

I started this blog because there were no uk based bloggers talking about it and after going on a marketing course by KeepYourFork I got the invaluable advice from Faye to write what I knew. It was never meant to be a business and I was totally shocked at how it took off. This filled my time whilst I was too ill to work and obviously I still adore it! I was approached by an agent who asked if I wanted to write a book and I felt like my dream to be a writer was coming true! Unfortunately it didn’t come off ( though I still want to make it happen!) but I did start writing for the Metro and magazines.

In 2015 I started working for Scope and I’m still there, I love my job, I feel like I get to make a difference every day and they are an amazing charity to work for. It’s perfect for me as I work from home and they not only accept my impairment and the effects of multiple surgeries but they embrace it.

Then earlier this year completely out of the blue I got a phone call that changed my life. BBC Radio Sheffield asked if I’d be interested in auditioning as a presenter and I leapt at the opportunity.

Nowt so strange as folk BBC Sheffield

I started my show with my cohost Leesh earlier this year called NowtSoStrangeAsFolk. It was terrifying at first! Not so much the talking but the technical side, I really doubted my abilities and wondered if I’d made a big mistake. But as I settled into it, it dawned on me. This is what I’m meant to do.

I cant even explain how amazing it feels, I adore it!!! I feel completely at home on the air and I’ve never felt so right, so comfortable, so me. I’m always doubting myself, I always think someone is going to tap me on the shoulder and tell me I’m a fraud, that I’m not good enough. But presenting makes me so happy, comfortable and just right!

And at the grand age of 37, I finally feel like I know what I want to be when I grow up. Presenting is where I feel I should be, it suits me, it feels right and good and I’m starting to believe that I’m worthy.

I would still love to write a book and my blog will always be my baby and something that has my heart. But presenting for the BBC has given me the confidence to actually believe in myself and to dare to think that I can be successful in this.

Whatever your age, whatever your background, know you can make it happen. Believe in yourself and keep pushing, keep trying, keep moving forward. And if you don’t know what you want to do then try different things, you never know where every opportunity will take you.

I hope you’re enjoying the show, I’d love to know what you think so do let me know.

✌🏽 & ❤️

Sam xxx

Two years ago…

Two years ago I started working for Scope as the senior community officer. I saw the job advertised on Twitter and retweeted it saying how I wished I lived in London so I could apply. I got a reply saying that for the right applicant they would consider remote working and so I decided to apply.

At the time I was blogging here and working as a freelance writer for magazines and for the metro and though I enjoyed it, it was hard work always hunting for the next job and pay was low and sporadic. Timm has always been self employed and I had been for the past few years and so the thought of working for someone else was also scary but the idea of a regular monthly wage was a definite plus.

I applied and was thrilled to get an interview but then just after I ended up in hospital having yet another emergency surgery and so the thought kind of went out of my head. We also had a big trip to India planned and I was trying to figure out if I’d be well enough to make it there.

So when I got the phone call offering me the job I was shell shocked. Years of illness had really knocked my confidence and I didn’t think I’d actually get the role. I stuttered a yes, put the phone down and burst into tears, the knowledge that I was still valid as a chronically ill person really hit me. Feeling wanted and needed in the workforce boosted my confidence and I couldn’t wait to take it on.

I started work and the change in working set hours every day was tough at first! But my manager Alex was so kind and supportive that I soon fell in love with my job. I look after Scopes online community and so every day I get to work with disabled people, supporting them, problem solving and I learnt so much about so many impairments, benefits, social and economic issues around disability. It was pretty overwhelming at first but I couldn’t believe my luck and adored my role.

Over past two years with Scope I’ve had 2 big surgeries and had to take quite a bit of time off to recover. I was frightened that they would be annoyed by this, that my health issues would be seen as an inconvenience and would I even possibly lose my job?

But my concerns were unfounded and the support has been phenomenal, mainly due to Alex’s management. He has always been concerned but supportive, sad for me that I was having a tough time but firm in his belief in me and in his support in getting me back to work at the right time for me in a way that I could manage and this helped so much. I felt guilty a lot of the time, feeling like I was letting them down and just sad in myself that I wasn’t fit or well enough to do my job.

Finding a supportive company who understand the value of a disabled worker is difficult, I have worked for other companies who have been awful. When I spoke to one about my need for toilet breaks due to Ulcerative Colitis I was told I needed to manage my time better. I’ve had bosses who phoned me every day I was off sick checking up on me, making me feel like they thought I was faking.

But Scope have been amazing and I can’t sing their praises enough. This year I made the very difficult decision to cut my hours from full time to three days a week and they made it all easy and non-judgmental. They know I work hard, I put my all into work and they appreciate that though my illness has an effect on my life, that it benefits them to have someone who actually understands what their customers are going through.

Two years had gone so quickly and I hope I’ll be there for many years to come! There’s not many people who love their job and I feel so lucky to be in a role I adore, with an amazing team and a company who are fully supportive!

Happy Scope Birthday to me!

✌🏽& ❤️

Sam xx

What I wish people understand

I wish people understood that I live my life in pretty much constant pain, that I survive by popping painkillers, high strength codiene every day.

I wish people understood that each day feels like an uphill struggle, that having a jangling, aching pain drags you down and that there are times when it’s just all too much.

I wish people understood the sheer amount of effort it takes to do normal tasks and the frustration that I can’t do what I want.

That when I do the things others do, it takes planning and supreme gumption and the knowledge that it will wipe me out and take away my ability to do other things.

That when you ask how I’m doing, it’s hard to know how to answer. The answer is generally “pretty shit” but I don’t want to bring everyone else down.

I wish people understood just how tough it is to work, that I push myself daily to get through the day when the pain, fatigue and brain fog make me want to crawl into a duvet and cry.

That to work means cutting back on pain meds and weighing up the benefits of pain relief with the foggy head, inability to drive and sleepiness and I have to make that decision every day.

I wish people understood fatigue. I’m not just “a bit tired”, it feels like a mix of the worst hangover and feeling like I’ve run a marathon. Every cell in my body is screaming at me to stop and lie down and rest but life still has to carry on.

I wish people knew I’m not lazy.

I wish people knew the guilt I carry every day, that my illness makes me not a good enough mum, not a good enough wife, friend, employee, human.

That I worry constantly that it will all get too much for those around me, that I won’t be able to do my job, that friends will get fed up of me cancelling on them, that Timm will get sick of looking after me.

I wish people understood that no matter how many surgeries I have, it never gets easier, it gets worse. It’s scarier every time, knowledge isn’t always a good thing.

I wish people understood just how fed up I am of being ill, being in pain, being tired.

I wish people understood.

✌🏽& ❤️

Sam xx

Cineworld Sheffield VIP experience

Timm and I have Cineworld unlimited cards, they allow you unlimited access to Cineworld screenings and costs £17.90 a month (it’s more for London West End) and you have to sign up for a 12 month contract.

Its a total luxury but we love films and since I got ill we don’t go out out much but even when I’m really poorly I can usually manage a cinema trip.

On top of the unlimited film viewing you get 10% off drinks and snacks and that goes up to 25% off if you have the card for more than one year. You also get discounts at a range of restaurants.

If you’re interested in signing up follow this link and when you register, use the recommend a friend code RAF-99GK-64PW-79JR-31PZ, you’ll get one free month and so will I! Then you can get your own link and anyone signing up with that will get the same deal with you getting more free months.   This code will only work 12 times so if you’re interested, then click the link and use the code above sooner rather than later!

The other good thing is you get money off for 3D, 4D and the VIP tickets, so we thought we’d try the VIP experience out.

Its usually £29 per person, but with the unlimited card it is £19. For this you get to go to the VIP lounge 45 minutes before the film starts and you get unlimited food (pasta, pizzas, salads) cinema snacks (hot dogs, nachos, popcorn) desserts (cakes, frozen yoghurt) and soft and hot drinks!

Cineworld vip Sheffield Desserts

The seats are lazy boys and fully recline and are so comfortable and you can get as many drinks and snacks throughout the film.

Its not cheap I know but for a special treat it was fab! Timm and I went to see Bohemian Rhapsody tonight in the VIP cinema and we loved it. The film was AMAZING and I’d highly recommend it.

The food was really nice, we wondered whether it would be a bit lunchroom but it  fresh and was very tasty. There was the options of soup, potatoes, pasta, sweet and sour chicken, pizza, garlic bread and salads and it was unlimited so you could fill your boots!

Soft drinks including all the normal pop, squash, bottled water and hot drinks were also unlimited. There is a full bar too but that isn’t included, we didn’t have any alcohol so I can’t comment on bar prices.

There is a dessert bar with a variety of cakes and a frozen yoghurt machine with lots of toppings, also you could get hot dogs, nachos and popcorn.

We would have definitely spent more than £19 each if we’d have gone for dinner and the cinema and even at £29, you can still get your money’s worth.

Cineworld vip Sheffield

The cinema had 40 seats, all were individual lazy boys that reclined and had leg rests that raised so you could get really comfortable. When I’m in pain, I’m often seen in the pictures with a neck pillow, blanket and sometimes my hot water bottle! But none of these were needed here, they were super comfy and I could have fallen asleep on them! You have tons of leg room and a little tray to keep drinks and snacks on.

It was a really enjoyable experience and though I wouldn’t do it all the time, for a special treat or date night it was great fun and really made it quite special so I’d recommend it.

This isn’t a sponsored post in any way, I just thought I’d share our experiences. If cinemas can be tough for you with chronic illness or pain, this was definitely a lovely treat, the chairs alone made it for me. I was in quite a bit of pain tonight but being able to move the chair to suit me and curl up was a huge bonus.

Let me know what you think! Have you tried it? Would you give it a go? What do you think of the price?

✌🏽 & ❤️

Sam xx