Everyday racism

Today is a bit of a different post for me, I want to talk a bit about racism.

Let me introduce myself

My name is Sam Cleasby and I am a British woman and my heritage on my mother’s side is Mizo.

Mizoram is an eastern state of India. “Mizoram is one of the states of Northeast India, with Aizawl as its capital city. The name is derived from Mi (people), Zo (lofty place, such as a hill) and Ram (land), and thus Mizoram implies “land of the hill people”. Like several other northeastern states of India, Mizoram was previously part of Assam until 1972, when it was carved out as a Union Territory. It became the 23rd state of India, a step above Union Territory, on 20 February 1987, with Fifty-Third Amendment of Indian Constitution,1986.”

I visited India a couple of years ago and blogged about it, you can read about India with an ostomy bag here!

sam cleasby ostomy travel blogger india ileostomy ibd

My family history is long, varied and something I am proud of.  Yet because my skin is lighter than some, and I look less like my mum and nan than my dad I live in a weird societal time where people unaware of my heritage voice inappropriate and racist comments in my presence and where I feel a responsibility to counteract those thoughts.

Yet so often I have been told when voicing these opinions that I have ‘a chip on my shoulder’.

Hidden racism

There are the overt, hate filled, angry red faced racists in this world. Generally you can see them a mile off and we all tend to avoid them. Most people arent blatant in their racism.

But it’s the quiet ones that concern me. The “I’m not racist buts”, the inappropriate racially motivated jokes ones, the “so WHERE are you from” ones, the slipping the odd word into conversation ones. It’s the everyday racism, the micro aggressions, the daily reminders that you aren’t white.

These are the people who distress me the most as sometimes it’s really hard to recognise them, and sometimes you get totally surprised that it is someone you wouldn’t expect.

Sam Cleasby Timm Cleasby

A while back, someone was chatting to my husband Timm and he used the word ‘p*ki’ . He was totally taken aback and shocked and walked away from the conversation, he was upset and asked “what should I have said to him?”

A friend had a similar situation where someone used a racist term in front of them. They were upset and uncomfortable but didnt know what to say.

People have said to my husband “ohhh what’s it like having an Indian wife? I bet you get some great curries!” These arent hate filled bigots, they aren’t trying to offend, but honestly being othered like this is very wearing.

What do you say?

And I think this is a problem. It often can feel like you’re making a big deal, causing a fuss if you call people out on inappropriate language. It can feel embarrassing and upsetting.

But try being the brown person on the receiving end of racism constantly. At least once a week, someone comments on my “tan”. 

So often I’m asked “where are you from?”

“Sheffield” I respond. “No but where are you FROM?”

“Ermmm I grew up on Norfolk Park”

“Ok, where’s your mum and dad from?”

“Ohhhh sorry I get it, you’re asking me why I’m not white!”

It feels very devisive and othering. And I know I have much more privilege than other BAME people who face far, far worse than I do.

As someone who can “pass” for white (and I do hate that term”, I’m privy to conversations that people whose skin is darker than mine probably dont hear. And its depressing.

sam Cleasby Mizo British blogger Sheffield - everyday racism

Embarrassment

For years, I felt embarrassed in these situations. Like I would be the one to ruin the dinner party by questioning the guy pushing me on where exactly I’m from. Or spoiling the social event by calling out someone dropping a P-bomb. 

I felt like I was causing a scene to explain to the woman at work that telling me she was having a “chinky” that night was offensive. 

I felt like I was embarrassing someone who assumed I would like a spicy meal because of ‘you know’ and waving a hand over me, presumably referring to my skin colour and background.

But I’m done with feeling embarrassed by this. It’s time I voiced my feelings. The person using these words should be the one to be embarrassed not me.

There is so much more I could write about on this topic, especially in the political climate of the world at the moment. But for now I’d just like to say that we all need to feel less intimidated in calling out the bullshit around us. 

It’s ok to say “I find that term inappropriate, upsetting and offensive.” 

It is ok to walk away from a conversation that you find wrong.

It’s ok to be upset by racism and it’s ok to talk about it.

And this is something I need to remind myself of.

✌🏽 & ❤

Sam x 

Ostomy bags and Brexit

Everything seems so unknown and uncertain at the moment. With Brexit looming, I have seen a few people worrying about whether there could be shortage or delays in delivery of ostomy bags.

I asked the question on twitter and here are the responses I got from Respond, Coloplast Charter and Convetec.

If you are concerned, then speak to your ostomy supply company and as always be ahead of your needs in ordering.

Are you concerned about your illness and the effects of Brexit? Let me know

Sam xx

It’s my 6 year no coloniversary! Happy birthday ileostomy!

Six years ago today, I had my colon removed and my first ileostomy formed! And what a ride it has been since then!!

You can read that first update Timm made after the surgery here, it is weird to read back. We were both so naïve and knew so little compared to now!

ulcerative colitis surgery

What has changed? The 4th ileostomy!

So much has happened since then. I have had 7 more surgeries, a jpouch, a jpouch removed, multiple hernias, fatigue, joint pain, months in hospital, my butt removed and 3 more ileostomies!! I have also gained so much, I started working for Scope and presenting for the BBC. So Bad Ass reached well over 3 MILLION views and had many amazing opportunities. I have worked with Crohns and Colitis Uk on their campaigns. It was amazing to be named as one of the 100 most influential disabled people in the UK. I have spoken at events all over Europe and the UK and met some wonderful people!

Some things haven’t been great. I never knew that first surgery would set me off on a path to 7 more in 6 years. Sometimes, it has felt too much to bear and on more than one occasion I have wondered ‘why me?’ I have seen people I thought loved me leave me. I have felt more alone than ever in my life. Like the burden of my illness was too much for those around me.

Through it all though, the ileostomy bag really did give me a life back. It has given me back control and allowed me to travel the world and actually plan things in with my family. If I could do it again, would I? Well hindsight is a wonderful thing. Maybe if I knew the pain I would face over and over again, I would have been too afraid to go ahead with the surgery. But maybe the outcome would have been very different if I hadn’t had my colon removed. Maybe I wouldn’t still be here, or maybe I would be here but still sat on the toilet 20 times a day in tears?

What advice would you give yourself?

None of us have a crystal ball and we have to roll with the punches and do what feels right at the time. I’m sure I have made mistakes and could have done things differently but today I was thinking about what advice I would give myself back 6 years ago. So here it goes:

It’s ok to be scared/sad/angry. I think 6 years ago I felt like I had to feel grateful for just being alive and that any ‘negative’ feelings were me letting myself and others down. This is rubbish. All emotions are necessary and none should be shunned. You body and your life will be changing a lot and you need to process all these changes. Allow yourself the time to feel what you are feeling.

Speak up – talk to the people closest to you about what is going on physically and mentally. Tell them how you feel and what you need.

There is no right way to ‘cope’ – What works for one person won’t work for the next. Listen to your body, listen to your heart.

Don’t do too much too soon. I know how hard it is to rest up, but you have been through a HUGE surgery! You need to give your body so much time to heal. I have always done too much too soon and I have lived to regret it.

You are a warrior. You have come through a tough surgery and your body looks and feels very different, you have a hard path in front of you, but you are a warrior and you can do this!

Think positively. I know, I know, you just rolled your eyes!! But really, it is easy to slip into negative thinking. There will be positives in your life, no matter how small, and trying to find those silver linings in your day can help so much.

If you could go back in time and give yourself advice back when you were diagnosed or to a point of your illness where it changed, what would it be? If you have an ileostomy, what advice would you have wanted to hear?

Sam xx

Body painting

Last year I got one of those odd phonecalls, they are always the best ones, asking if I would like to have my body painted for BBC Radio Sheffield. And of course I said yes!

It was a party for the Naked Podcast and after I appeared as their guest, I was painted live during the show by the brilliant Julia from Julia Arts Body Painting.

We decided on an Egyptian theme around the scarab beetle. The Scarab is also known as the Dung beetle so it seemed fitting but they also symbolized the restoration of life and we thought that was a nice touch after so much illness and surgeries for me.

body painting sheffield

body paint sheffield ileostomybody paint sheffield woman positivity ileostomy

Julia was great and gave me plenty of rest breaks and kept asking if I was ok, she put me completely at ease which wasn’t easy being half naked in a room full of people whilst having someone paint your boobs!

I waited till it was finished to see the final artwork and I was blown away.  It was an odd feeling but I felt so empowered, I felt like a queen! I got quite emotional to see my body that I am so used to seeing scarred, sore and broken to be displayed as this beautiful, living, moving, celebration of who I am!

It was such a positive experience and I can’t thank Julia, Kat, Jen and Paulette enough for giving me such a wonderful feeling of power and celebration.

Sam x

Telogen Effluvium – Hair loss after surgery

I have had 8 surgeries related to IBD over the past six years and something that no one told me about was hair loss. Hair loss after surgery is known as Telogen Effluvium and today’s post is all about the T.E. I wrote a little about this in 2016, you can see that post here.

Hair loss after surgery

Usually around 3 months after surgery, I start to find my hair falling out. Firstly, it is more than usual in a hair brush. Then when I wash my hair I find lots more than usual coming out. I then start to find it on my pillows, coats, desk, everywhere! It is really distressing and I was shocked to find out how common it is. And how little people are told about Telogen Effluvium. This is when the stress placed on your body after surgery has interrupted the growth cycle of your hair.

As I always say, this blog is not meant to replace any medical advice and if you suddenly begin to lose your hair unexpectedly, then always speak to a medical professional. There are many other reasons why you could be going through hair loss and it’s important to rule out anything more serious.

red hair sam cleasby

I have had so many different hair cuts, styles and colours, it’s a running joke that people never recognise me as I can look so different. I have naturally very thick, straight, dark hair but I enjoy changing it up.

Shaving it off

But hair loss wasn’t something I thought about. So when it first thinned out and was coming away by the handful, I was terrified. But as my hair is so thick, others said that couldn’t tell. I was lucky that it thinned all over as opposed to coming out in chunks.

Last year, I found my hair getting very thin and coming out all over the place and so I decided to shave the lot off! Probably a bit drastic for some, but I have had a shaved head a few times and loved it, so off it went!

Sam Cleasby ostomy bag stopping smoking hernia telogen effluvium

Why Does it Happen?

The following information is from the Hair Sentinel website. and from The British Association of Dermatologists

During times of stress, the body will send its precious resources (vitamins, minerals etc) to the areas they are needed the most. This means that important nutrients are diverted away from the hair follicles and towards other parts of the body that need them more (for example, when healing after surgery). The name of the subsequent hair loss is telogen effluvium.

Telogen Effluvium Explained

There are three stages of hair growth:

  • anagen
  • catagen and
  • telogen

The anagen phase is the ‘growth’ phase, when the hair bulb forms in the follicle and grows into an actual ‘strand’ of hair.
This phase lasts anywhere from 2 to 8 years.

The catagen stage is the ‘transition’ stage. In this time, the hair stops growing and moves up in the hair follicle.
This stage lasts for about 10 days.

The telogen stage is the ‘resting’ phase, and this is where the hair stays until it’s shed.
This stage lasts for around 3 months.

When the body undergoes the physical stress of surgery, it enters the ‘telogen’ stage too soon, and is shed at the end of the stage, 3 months later.

What causes telogen effluvium?

What causes telogen effluvium

Increased hair shedding in telogen effluvium occurs due to a disturbance of the normal hair cycle.

Common triggers of telogen effluvium include childbirth, severe trauma or illness, a stressful or major life event (such as losing a loved one), marked weight loss and extreme dieting, a severe skin problem affecting the scalp, a new medication or withdrawal of a hormone treatment. No cause is found in around a third of people diagnosed with telogen effluvium.  

Will the Hair Loss Stop?

Telogen effluvium usually resolves completely without any intervention as the normal length of telogen is approximately 100 days (3 to 6 months) after which period the hair starts growing again (anagen phase). However, depending on the length of the hair, it may take many months for the overall hair volume to gradually return to normal. Telogen effluvium can return, especially if the underlying cause is not treated or recurs, and would be called chronic telogen effluvium if lasting more than 6 months.

It’s good to know that it’s extremely rare for hair loss after surgery to result in baldness. There is normally no treatment for telogen effluvium as the hair will start growing back once the trigger is removed. Medication does not speed up this process.

Where I’m at now

So as my hair started to grow back last year, I then had another surgery. Though I didn’t notice much hair loss after this one, I felt like my hair was getting back to some health. Weirdly, it has grown back much curlier than before though!! But this past week as I am now 3 months post op again, I am noticing more and more hair falling out in the shower. So I think it is all starting over again.

Sam cleasby

The emotions around hair loss

We talked about hair loss over on the So Bad Ass facebook page so you can head over to read other people’s experiences.

I know that for some, hair loss can be absolutely devastating. Just another kick in the teeth after a long journey of illness. For many women, hair feels like a big part of their personality and femininity.

Despite having shaved my head several times, the hair loss does really bother me. It is the lack of control of it all. It is scary to wash your hair and pull your hand away and see a big handful of hair there. As my hair is thick, others say they don’t notice and so it can feel a little like I am being dramatic when I say I feel upset by it. But whether anyone else sees it or not, it still is very real to me.

Have you been through hair loss, either through Telogen Effluvium or for another reason? How did you feel? What did you do to manage the situation? I’d love to hear your experience.

Sam xx

Glastonbury fun

I talked a bit about my Glastomadrama at Glastonbury. It was pretty stressful even though it did all end well. But I thought I would just share a few photos as we had a really lovely weekend.

I was unsure as to whether we would make it at all as it was only 7/8 weeks after my surgery. But as Timm and my son were working there, it would have been pretty lonely at home. I am so glad I made it, even if I did have to rest a lot whilst we were there.

Sam and Timm Cleasby at Glastonbury festival

We had just the loveliest weekend. It’s been a really stressful time and to get some one on one time with Timm was pure joy. Charlie came with us (Eli is in Australia and Thom didn’t want to come so stayed with his bff) but he is nearly 19 so didn’t want to spend the whole time with us. He mainly just popped back for food, drinks or cash! So it was brilliant to get some time with Timm that was about nothing but fun.

Glastonbury flags

Glastonbury

If you haven’t been to Glastonbury, it’s like another world. A whole city of over 200,000 people, it is absolutely huge! My first Glasto was in 2000 when I was 6 months pregnant and this was my fifth time there. If you have an impairment or disability, then get in touch with the access team as soon as you have your tickets. You can talk through your needs and ensure you have things put in place to support you. Whether that is PA tickets, accessible camping, accessible toilets, disabled platform access or more, don’t assume that you won’t be able to enjoy a festival, have a look into what they can do to make it accessible to you.

she wee at festivals ileostomy bags

For me, it was all about access to the toilets so I knew I could get there at a moments notice and have the space and facilities to change my bag if needed. I didn’t use the accessible toilets unless it was necessary or an emergency. When you are facing a stinky, overflowing festival toilet, having a she wee and an ileostomy was a god send!! Stand up wees and poos for the win!!!

Glastonbury with a teenager

I’ve always taken the kids to festivals since they were babies but it is so different with an adult child! I have to say it was lovely to not have to worry too much about him. It was also great to have time to see bands we like together. He is an absolute doll that biggest bambino of mine!

Camping with an ileostomy, festivals with a stoma chronic illness and festivals

It was a HOT one! Temperatures were well into the 30s which made my ileostomy bag a bit of a nightmare. It was hot and sweaty and trying to keep hydrated was tough. I took some rehydration sachets with me (I always keep some in my kit bag, theyre my number one recommendation!) They were so useful in staying hydrated and well.

Your festival, your way

The main thing for me is to not fall into the FOMO trap and to listen to your body. As I was recovering from surgery and also just living with the aches, pains and fatigue of chronic illness, I know I need to rest. It is easy to feel that you have to do festivals a certain way, that it’s about going wild and being out all night. Or feeling you have to see every single band there.

The reality is that you do your festival your way. Sure, make a list of the bands you’d like to see, but also know that you probably wont see them all. And the things you don’t expect to see that you fall upon will be the best things ever.

Listen to your body and do what you need to do. For me, that meant missing Stormzy as the crowds were too big and I got quite anxious at the thought of being knocked in my stomach. But instead we went and sat in the stone circle and had a drink and watched the whole beautiful festival below us.

It meant going to bed at 9pm on the Saturday night because I was exhausted and in pain. But it was lovely, I had a cup of tea and read my book whilst listening to the Killers playing in the background. My Glasto might not be everyone’s cup of tea, but it was right for me and that’s what is important.

relaxing at a festival chronic illness

The whole weekend was a joy and though at times it was tiring, I was so proud of myself for making it there.

Here’s to Glastonbury 2020!

Sam xx

My Glastonbury hero – there are still good people in the world

Let me tell you a story about how people are wonderful. A modern Glastonbury tale of social media and kindness.

In April this year, I had my 8th surgery in 5 years. We had Glastonbury tickets and I thought there was no chance of making it, I didn’t think I would be well enough to go.

But I did make it!! Thanks to the accessibility team for sorting me toilet and access route passes and my husband for tons of patience and support. If you are attending a festival, do check on their website for access information and get in touch with their team to discuss your needs. You can find Glastonbury’s Access information here. Also check out Attitude is Everything. Attitude is Everything improves Deaf and disabled people’s access to live music.

Anyway, I got there to the hottest glasto in a long time and my stoma started playing up. The stoma bags were peeling off and I went through 16 in 4 days. I think it was a mix of the heat, sweating, my still lumpy and uneven tummy and unfamiliar food.

Stoma problems

Usually I change my ileostomy bag every 2 or 3 days, so to be safe I packed 18 bags so I’d have loads spare. But by Saturday at Glastonbury I only had 2 bags left and my bag keeps leaking. I enter panic mode, how on earth have I gone through so many? Why didn’t I pack even more? Was I going to have to go home

We went to the medical tent but they didn’t have any ostomy bags. They suggested calling my supplier or going offsite to the nearest hospital and asking them. I called my supplier but they were closed till Monday. The thought of getting offsite and out to a hospital and then getting back seemed too much to bear.

So I decided to tweet my plight with the hashtag #glastomadrama and got 100s of retweets! Maybe just maybe, there will be someone here who has a few bags to spare? I’m panicking, this could be festival over. To get so far to get here then have to leave?! Gutted!

Then I got a phone call from BBC Sheffield – a woman has seen my tweet and called her dad. When he couldn’t get in touch with me, hed seen I present on the BBC and called them to give me his number!

My hero

He was at Glasto and has some spare ostomy bags! I can’t believe it, a knight in stoma bag armour!! We navigate a meet up, which anyone who has been to Glastonbury knows can take a long time and be a nightmare. We exchange text messages saying “I’m wearing a shirt with tigers on it and I’m outside the Caberet tent” and “I’m an old man wearing a flowery hat”!! Eventually we find eachother and he’s happy to give me the bags. But there’s a problem, the bags are in his campsite the other end of Glasto, maybe an hour or so walk. I feel a bit sick, I just don’t think I can manage the walk there and back.

So we went to the Welfare Site and asked for help! They called the A Team who came to our rescue and drove us both to his campervan to redeem the ostomy bags and saving my festival!!!!

Glastonbury A team welfare team disabled accessibility

Andrew spent a good few hours of his Glasto to help out a perfect stranger. He could have ignored the tweet, he could have realised I couldn’t manage the walk &not want to wait for the a team to drive us, he could have turned his head and pretended not to notice. He didn’t.

If not you, then who?

This is Andrew. He redeemed my faith in humans and saved my festival. He said to me ‘if you’re able to help someone, then help them, if not you, then who. If not now, then when?’

Glastodad glastonbury with an ostomy bag

Thank you Andrew, you’re a true gent!

Sam xx

My 6 week post surgery check up

This morning, I headed back to hospital for my 6 week post surgery check up. I had two hernias fixed in my last surgery, a parastomal hernia resolved, my stoma resited and abdominal reconstruction. It was a big operation and was my 8th surgery since 2013.

6 week post surgery check up

I’d been warned that it was going to be a very tough recovery. That I would need 2-3 months off work and to prepare for a lot of pain. Its been a tough 7 weeks but I am really pleased to say that everything has gone well and my recovery is right on track! I am still swollen and have some hard lumps of scarring but they are happy with the results.

The check up was with one of the surgeon’s team. The doctor examined my stomach and talked through all of my concerns. I felt very nervous that he was going to find some complications but he said I was doing better than expected. I am feeling really relieved. Thanks to Timm for driving me and being there . We talked through all the questions I wanted to ask before so that he could remind me if I forgot once I was in with the doc. If you don’t have someone with you at your appointment, I suggest writing a list as it’s easy to forget!

Timm and Sam Cleasby 6 week post surgery check up Sheffield northern general hospital

Back to work

I am signed off work till the end of June and they’ve suggested a phased return to work from July. I’m both nervous and excited about this. I work for the disability charity Scope and they have been so supportive to me during this time. They haven’t put any pressure on me and have supported me in taking the time I need to recover.

I also present a radio show on BBC Radio Sheffield on a Saturday morning from 10-12 called Nowt So Strange As Folk. I returned to that a couple of weeks ago thanks to Timm being my chauffeur. It’s only 2 hours a week but it’s mentally tiring. I have been coming home on a Saturday and spending the rest of the day in bed!

Exercise after surgery

We have discussed my recovery moving forward and at the 6 week post surgery check up. The doctor said they were happy for me to start an exercise regime. I am joining the gym and will be seeing a personal trainer as part of my physiotherapy.

I stopped smoking in February this year in preparation for the surgery and I’m happily now a non smoker. This is so important as there’s a link between smoking and recurrent hernias.

I am also aiming to lose weight and get much stronger. I’m currently classed as overweight and this can mean I’m more likely to get another hernia. It’s been an awful 6 years of recurrent hernias and so I need to do everything I can to reduce my risks. I’ll blog more about the exercises Ill be doing after I see my PT in July.

Mental health

I have been quite up and down mentally, it’s really tough to be stuck in bed unable to be independent. And even more so when it’s the 8th time in 6 years! I have slipped into depression before after surgery and so it’s at the forefront of my mind to take care of my mental health.

One thing that has been difficult is that I am reacting to certain things that make me feel right back in that hospital bed. The other night I was flipping through the TV channels and I happened upon a real life hospital show. .I paused and watched a patient in a bed writhing in pain. The doctors and nurses were rushing about, the machines bleeping, and I felt my chest tighten. I felt jittery and panicked and a fear washed over me. I was sweating and struggling to breathe.

A similar thing happened the other night. My ileostomy bag leaked in bed. It was only a slight leak onto my skin, I caught it before it went on my sheets. So I cleaned myself up and changed my bag and then saw a air freshner spray that had been in my hospital bag. I sprayed a couple of squirts to cover any poopy smells in my room. That smell of the spray immediately took me back to being in the hospital bed and I went into panic mode again. After talking to a friend I recognise that certain sights, sounds and smells are triggering me. This is common with people suffering from PTSD (Post Traumatic Stress Disorder).

So though I am feeling positive for the future, I am aware that my mental health has been affected by all of this. I have started back on my antidepressants and I am really focussed on looking after myself. From meditation to self care, planning to spend time and energy on myself is really important.

The future

How does the future look for me? I don’t know. I have to hope that it will be surgery and complication free. The thought of going through all this again and ending back in the same place is just too much to bear. I don’t think I could cope with more surgery and to be honest I don’t think they would consider another hernia repair as I have had so many now and my abdomen is such a mess.

But I cannot think about the worst as it would make me spiral. I need to think positively and plan for success. My goal is that by next year I will be strong enough to learn how to kayak. I want to spend the summer camping with Timm in our campervan, hiking, wild swimming and kayaking. It is a dream right now, but I am going to put all my effort into building as much core strength and muscle as I can. And all I can do is to try my best.

Peace and love

Sam x

I did something awful

Recently I did something really awful, something I’m quite ashamed of and that I really should know better. I judged someone on their social media and their chronic illness. I saw someone posting about going out to a social event and thought “Oh, I thought this week you were really ill?!”

Someone I see on social media has an invisible and chronic illness and shares their life to educate others about the impairment. They had been posting a lot about how difficult a time they are having and then I saw a photo of them heading out to a really busy social event. And I judged them.

I’m embarrassed about this and I’m not writing this post to make any single defence. But to talk about how we all can sometimes judge others even when we truly do know better.

Feeling judged? I should know better

I publicly share a lot of my life, the highs and the lows of life with a chronic illness. And I have been judged many times. People making comments about me going for dinner when I have said I’m struggling with fatigue. Asking how come I can manage to go to a festival when I have shared my pain levels. People just openly telling me I don’t look sick with a suspicious stare as if I’m making it up.

So I’m shocked and ashamed of myself that I had this thought. I wondered how they were going to manage going to an event when all their posts that week had been about extreme pain and inability to walk. How very dare I?

Because the reality is that you have no idea what someone is going through by just looking at them. And when you feel judged, it just makes life feel worse.

I have managed to work a full time job whilst living on painkillers with horrific pain, insomnia, depression and awaiting surgery.

I have been on a night out despite feeling like death because I was fed up of letting friends down so much and not wanting to cancel. I’ve shit myself on a night out, cleaned myself up, changed and then smiled for an instagram selfie.

On my wedding renewal day, I was bleeding from my jpouch so heavily that I had to wear a pad. Yet my photos wouldn’t give that away.

timm and sam cleasby wedding

Festival and travel

I’ve been to festivals whilst being desperately unwell because I didn’t want to lose the ticket money and ruin other people’s plans.

I’ve travelled the world whilst recovering from major surgery, feeling terrified, fragile and had to carry a case filled with medication. On one trip I had to inject myself every single day into my stomach. But my holiday photos don’t tell that tale.

india with an ostomy taj mahal in a wheelchair sam cleasby travel blog judged

I have had people write comments on my social media criticising my for these things, saying I don’t look sick. People saying to my face or online that if it were really as bad as I say, then I wouldn’t be having a social life like this.

And it’s a crippling feeling of judgement, a weighty slump of worry. Not feeling believed, supported or understood. It’s devastating.

So I have no idea why this mean spirited thought popped into my head when I saw someone doing something fun despite their illness. I can only say that I didn’t comment to them or to anyone else and as soon as I thought it, I caught myself and gave my head a wobble.

Perhaps it was jealousy more than anything (not that it makes it ok). I’m 5 weeks post op and still in an awful lot of pain. I’m exhausted all the time and though I’m getting better, it’s still really tough. And maybe I just wished I could be doing what they were.

Be kind yo

I suppose the reason for this blog post is a reminder that sometimes we all can judge others unfairly. That we can think the worst and make unwarranted and negative assumptions. But those thoughts and assumptions are on us and we all need to remember that everyone is fighting their own battles and you have no idea what they are.

If you find yourself judging someone else on something that you have no idea about, then keep it to yourself! And then think about the damage those negative comments can make to another person.

We have all done it. But if we’re aware of how wrong it is, then hopefully we can make the world a little kinder.

Be kind quote everyone is fighting their own battle

We seem to live in a world where social media tells us we can never make a mistake. We can never slip up, say or think something out of character. The truth is we all fuck up from time to time, but if there is no room for self recognition and allowance to learn, educate yourself and make positive changes, then where are we left?

To err is to be human, and in my poor thoughts I have realised that we can all mess up. I’ve been judged in the way I judged someone else. And it made me realise that maybe we need to speak up a little more when we do something wrong. And maybe society and social media need to be more open to allowing people to make amends for their mistakes?

✌🏽 & ❤️

Sam xx

Happy birthday me!

Today is my birthday and I reach the grand old age of 38! I swear in my head I’m only 19…

Happy birthday me!

It’s been a hell of a year, two surgeries, losing my nan, our American adventure, depression, a break down, a new radio show, lots of pain and plenty of struggles.

I’ve learnt a lot this year. I’ve learnt that you just never know what is around the corner. That we need to care for ourselves. Hold the ones we love close and let go of the negative bullshit in our lives.

Love my narwhal birthday cake

Feeling positive

For the first time in a long time, I’m actually feeling positive and hopeful. I have the most amazing friends, a loving and supportive husband, jobs I adore. I also have brilliant kids who are setting off into the world on their own paths. We are crossing everything that this last operation will be the one to make it all better.

I feel like I’m able to make plans for our future. To really assess the things that bring me joy and go after them.

I’m planning to get strong. As soon as I’m able I’ll be working with a physio to get my body as strong and healthy as I can and I can’t wait!

Timm and I are so lucky to have our friends Caroline and James in our lives. They are our family and have been there for us every step of the way through some of the toughest years we’ve ever faced. We are forever grateful to have such amazing people with us.

So what am I hoping for the year ahead?

I want to get back to work as soon as the doctors agree. Camping trips in our campervan with fires and countryside and dogs. I’m going to get strong and fit enough to get walking, to be able to go and hike and be in nature. Also I want to learn to kayak!!!

I wish the greatest happiness to my son who starts University this year. Love and strength to my child who is off travelling for two months and all the best for our youngest in everything he wants. It’s big changes to us as a family unit with C leaving home but I hope it makes us all very happy.

I hope to have the strength to do more blogging, more raising awareness and to expand So Bad Ass.

Mainly I just hope we can have a happy year filled with kindness, laughter and love.

So happy birthday to me! I hope 38 is the year it al starts going right!

✌🏽& ❤️

Sam xx