Before I get out of bed

Before I get out of bed, I can do ANYTHING!

When I wake up in the morning, before I stand up, before I even sit up. The world is my oyster and I can do anything I desire. Before I stand and the pain starts , I am queen of the world.

This morning, I woke up and googled sea kayaking in Lanzarote. We’re having a few days away over there and I’m obsessed with kayaking! By that I mean that after my last surgery I spent every day in hospital dreaming of kayaking. I’m not sure why as I’ve only ever been on one once. But the fear of never leaving hospital was huge and when I meditated, I imagined being sat in a kayak with my husband on a calm serene lake with the sum on my face and it’s what got me through.

So this morning, before I got out of bed I searched for these kayak adventures of coastal exploration and snorkelling.

I thought about what I want to do today, starting with a long dog walk with the pups.

I thought about a big old clean up at home, mopping the floors and hoovering the stairs.

Going to pick up some gorgeous fresh ingredients and cooking a big leg of lamb and a sunday roast, inviting friends over.

Heading to the gym for a good work out, maybe a yoga class and then chilling in the spa after.

Before i get out of bed, I can do anything. And that’s why I’m putting off getting up. I’m laid on my side typing this on my phone because once I stand up, the dream is over.

Once I stand up, it feels like my tummy is going to open up and fall out. Without wearing support garments, its hideously painful. In the last op they did a huge abdominal reconstruction and honestly it feels worse than before now. I am going to see my consultant in a few weeks.

So when I stand up, all my dreams flutter away. My choices narrow, the plans have to begin. It’s not that I cant do any of these things, but its picking one. And then putting on support garments and planning when I take painkillers, getting the balance of proper pain relief without being zonked out. It’s not simple, or independent. It becomes a task to complete.

Before I get out of bed, anything is possible and life is much simpler. So I might just stay in bed dreaming for a little longer.

✌🏽&❤

Sam xx

The exhaustion of pain

Something that I have learnt over the past few years is just how tiring it is to be in pain. When you have ongoing, daily pain, it takes up so much energy both emotionally and physically. I don’t think people really understand just how exhausting it is to live in pain.

It is so hard to pinpoint which aspect of having a chronic illness that is causing fatigue and exhaustion. Is the tiredness a thing all on it’s own? Is it due to the sleepless nights, the pain or is it an emotional reaction? I think for me, it is a combination of a lot of things, but I am sure that the pain makes things so much worse.

sam cleasby ostomy bag

Pain

I am in almost constant pain right now. The last surgery doesn’t seem to have worked and my stomach is swollen and misshapen. It feels like my insides are falling our both forward and downwards. I have to wear multiple support garments and take strong painkillers all the time.

I am so tired. I feel thoroughly exhausted. And I am sure that a lot of this is due to the physical pressure of constant pain. My body is working overtime to deal with it and the exhaustion of pain is so draining.

Tiredness

Tiredness and exhaustion is often overlooked as a small side effect, but it effects every single part of your life. Work, family, friends, intimacy, diet, exercise. How can you cook a healthy meal (even though you KNOW a good diet will make you feel better) when you are so tired, you can’t get out of bed, never mind get to the kitchen and stand and cook.

And it really effects my mood. When I am in pain and tired, I find it hard to be patient. I feel so down on myself and everything around me. I feel like I am weak and powerless and it sucks.

There are of course medical reasons for tiredness and if you are experiencing new tiredness with no reason, you should see a GP. Unfortunately for a lot of people with chronic illness, tiredness just becomes a way of life.

I suppose I am just trying to find a way to explain this tiredness to others. I worry people think I am lazy when I spend my time in bed. Or that I am rude when I am yawning and dropping off. But can you remember a time when you have been really poorly, and that draining feeling where it feels like every ounce of your body’s energy is being used up fighting illness? Well that’s how I feel most days.

Exhaustion is something I need to learn to live with, but today it all just feels too much.

Peace and love

Samxx

CT Scans and updates

You may have seen this week on social media that I have been for a CT scan this week and so I thought I would do a quick update.

I believe the hernias are back. I don’t really want to admit that out loud but I think there is something wrong. I am in a lot of pain, my stomach is really swollen and it’s so painful.

CT scan for hernia

CT Scan

So I have had a CT scan and I will be seeing my consultant in a few weeks to get the results and see what the score is. I had the contrast CT where they put it through a cannula and it makes you feel like you have wee’d yourself!

I am devastated. I honestly can’t even think too much about it because I don’t know how I will cope. I know Im not strong enough for another surgery and I don’t know if they will be able to offer any other solutions. The thought of this being my life forever now, being in pain, is too much to bear.

I’m pinning my hopes on it being some awkward swelling, something that will go down on it’s own. But honestly, I don’t feel very hopeful.

These ideas I had of everything being good now are drifting away. My dreams of kayaking and adventuring in our campervan seem less and less likely. But I can’t allow myself to stop and cry because I’m scared if I do, that I will never stop.

Things just all feel quite tough and stressful right now. I feel so unsure on everything, life, work, home. What I want, what I need. I feel like I am on unstable ground and everything could topple at any moment.

I am having to take a lot of pain medication which isn’t helping with the confusion and uncertainty but is necessary to get through the days of pain.

Anyway, Ill update after seeing the docs and let you know what is happening.

Peace and love

Sam xx

Reasons to stay alive play – review

Aged 24, Matt Haig’s world caved in. He could see no way to go on living. Years later, he chose to write a book about that dark experience and what he learnt through depression and suicidal feelings. That book was Reasons to stay Alive.

The book was a bestseller and has been turned into a stage play of the same name. Last week, I was invited to see the play at Sheffield’s Crucible Theatre. And oh, how I sobbed…

I wasn’t sure what to expect to be honest, I had read the book and found it raw, honest and strangely comforting. As someone who has faced mental health challenges, it certainly hit a nerve and felt very real. But how would it work as a stage play?

Imagined for the stage by Jonathan Watkins, it uses music and movement to portray the realities of living with depression both as the person at the centre of the story and also as the family members.

Reasons to stay alive Sheffield theatres

#ReasonsPlay

It starts with Young Matt at a desperate point in his life when he is considering ending his life. He is led through the darkness by the older version of himself as well as his partner, parents and less than helpful boss.

There were parts that were so real, so honest, that they caused rueful laughs from the audience. You know, that knowing laugh that is saying “Oh fuck, yeah me too!” Other parts were so heartbreaking that they hurt my chest.

What was incredibly clever was that though the play centres on Matt (both old and young), the other characters are far from bit parts. I felt the anguished confusion of his mum, the devotion of his partner and the awkwardness of his dad. I have had times of depression where the darkness swallowed me whole, but watching this play gave me an outsider’s perspective of depression.

For a story about depression, panic attacks and suicidal feelings, it is surprisingly not a big downer. Yes, it was thought provoking, it made me cry and it brought up a lot of feelings that it has taken me a few days to process. But the overlying theme is hope.

‘Life is waiting for you. Hang on in there if you can. Life is always worth it’

Reasons to stay Alive is on at the Crucible Studio till 28th September 2019 and you can get tickets here.

I was invited to a press showing of Reasons to stay alive but I wasn’t paid for this review.

The University List – a parent’s guide to what to pack for Uni

When my son told me he wanted to go to University at the beginning of this year, it threw us all into a bit of a panic as he had always said he didn’t want to go! We were miles behind in planning, hadn’t done any of the Uni open days and as neither Timm or I went to university, we didn’t have a clue!

We buckled down, got some visits done and he filled in all the applications. We went through so many uni websites trying to decided which would suit him best and eventually decided on three options.

sam cleasby parent blogger leaving for university

He did well at college and got into his first option and so we started to plan for the big move. He decided he didn’t want to go into halls. His friend was starting his second year and they decided to get a house together. After much searching, and house visits, they decided on one and finalised plans to live there. Student financing was sorted and he was well on his way!

And then I started to think about all the stuff he was going to need and felt totally overwhelmed. But after a lot of research we pulled it together. Here is my Uni Packing list for parents.

Bedroom

  • Bedding – Mattress protector, duvet, pillows, bedding
  • Lamp and bulb
  • Clothes, shoes, coats, underwear
  • Coathangers
  • Things to make it their own – pictures, teddies etc
  • Dirty washing bag
  • TV, Games console
  • Chargers and extension cables

Kitchen

  • Plates, cups, bowls
  • Cutlery
  • Utensils
  • Chopping board
  • Scissors
  • Pots and pans
  • Toaster
  • Kettle
  • Microwave
  • Sandwich toaster
  • Tea towels

Bathroom

  • Towels
  • Toiletries – shampoo, conditioner, shower gel, soap
  • Razors and shaving foam?
  • Toilet brush
  • Toilet roll

Cleaning

  • Washing powder/pods
  • Toilet cleaner
  • Washing up liquid and sponges
  • Kitchen rolls
  • Bin bags
  • Shopping bags

Food

  • Tinned fruit/veg
  • Sauces
  • Pasta
  • Rice
  • Tomato ketchup/salad cream/mayo
  • Tinned beans and tomotoes
  • Salt and Pepper
  • Cereals
  • Noodles

Etc

  • Paracetamols/Ibuprofen
  • Stationery, paper, laptop
  • Cookbook or recipes from you
  • Noticeboard
  • Diary/calendar
  • Alarm clock

To do

  • Register to vote
  • Register with a doctor
  • Register with a dentist
  • Have bank accounts
  • Sort budgeting
  • Sort bills etc
  • Are they up to date with all vaccinations?
  • Tell them you love them and give them a big hug
  • Make sure their flatmate/roommate has your number in case of emergency

I’m sure this isn’t a full and complete list but it is everything I can think of right now. If you can think of anything else, then do let me know!

Good luck!
Sam xx

Roots and Wings – when your child goes off to University

Someone said to me this year “All we can do as parents is give our children roots and wings”. It really struck me and this week as my eldest child left home for University it felt very apt.

I talk about parenting quite a bit here, and it has been interesting to read back how I have felt at different times of our lives. You can read my post about not having a clue how to be a parent here. And my letter to all the imperfect mothers here.

Traveling the world

I have three teenage children aged 14, 16 and 18. It is such a shift as a mother to move into the teen years. The things that they need you for change as does your whole relationship. Over the summer, my 18 year old went to New York for 3 weeks on holiday and my 16 year old spent two months in Australia with my sister and so it has been a very odd year!

When the kids starting talking about going to travel, I was all for it. I truly believe that travel broadens the mind, the spirit and is a positive thing. When the time actually came round, I felt a lot more nervous about seeing my bambinos go off into the world. I was scared, worried and tearful. This is when I was told about roots and wings.

Dalai Lama quote roots and wings

The Dalai Lama said “Give the ones you love wings to fly, roots to come back to and reasons to stay”

I’m proud that my kids have the confidence to fly the nest and explore the world. I know they will always have my roots to head back to if they need me and they know that I love them and I am always their biggest fan.

I have really had to remember this quote this week as my eldest has left home and moved to Leeds to start university! He has moved into a house with his friend, he has a new job and will start his degree course in a couple of weeks.

when your child is leaving for university

The move to university

I have been collecting things for the move for months. Pots and pans, tins and packets, bedding etc. I have made him a little notebook filled with his favourite recipes from home and hints and tips for living alone.

We drove him over to his new home and helped him unpack. My heart was in my chest but the last thing I wanted was to make this exciting day about me. So I held in the tears and smiled as we unpacked with him and got him settled.

Then the time came to drive home. I hugged him tight, told him I loved him and we are always here for him and drove away.

I cried pretty much the whole way home!!!

Honestly, I’m not sad. It’s weird as I am insanely proud of him and I am so excited. For a lad who really disliked school I am shocked that he chose to go to Uni. But I am really looking forward to seeing him grow, mature and have a whole lot of fun.

Time to fly

I suppose the tears are because of change. This is it, the time where he is no longer my baby. Of course he will always be my child. But even if he chooses to come and live back at home in three years, it will never again be the same mother/child relationship. He will be 19 in a week! Our relationship has now shifted and it is scary. I hope I have given him enough love, wisdom, guidance and care and he will fly now.

We tend to relate events back to ourself and I left home at 14, sleeping on peoples couches. I was basically homeless till I was 19. Though I did move back home once or twice, it was years of living with family members or on friends couches. So my experience of leaving home is tied up in fear, pain and loneliness. I have to remember that it’s not my kids experience. Charlie is going off into the world with all our love and support and he cannot wait!

Sam cleasby parent blogger child leaving for university

So roots and wings, I keep reminding myself that leaving home is a part of growing up. I have done this part of my job as a mum. I will always be mum. It’s just a change in what he needs from me now.

You never know the last time

I was told years ago “you never know the last time”. The last time they will sleep in your bed, the last time they will hold your hand as they cross the road, the last time they will need you to chase away the monsters under the bed. Treasure it. The past 19 years have gone in the blink of an eye.

Empty nest, child leaving for university so upset crying

For more information about your kid heading off to university, you might like the Complete University Guide here.

Peace and love,

Sam xx

Its World Suicide Prevention Day

Research has shown that men are 3 times more likely to take their own lives than women across the UK – with men alone accounting for 3 quarters of suicide in 2017. 

These figures are just unacceptable. The following was sent to me and comes from Caba. I haven’t been paid in any way for this post.

Spotting the signs of suicidal thoughts in men

According to the mental health charity Mind, many people think about suicide at some point in their lives. Here are some of the things you may think or feel: 

  • Everything’s hopeless – what’s the point in living? 
  • There’s nothing positive in your life, everything’s negative 
  • Everyone would be better off without you 
  • You’re useless, unwanted or unneeded by others 
  • Your unbearable pain is never going to end 
  • You’re physically numb – you feel cut off from your body 
  • Taking your own life is your only option 

Meanwhile, you may also experience things like sleeping problems (including waking too early), changes in your appetite and you may lose or gain weight. Your self-esteem may be very low, and you may try to avoid contact with other people, and feel no need to take care of yourself (including your physical appearance).  

Spotting the signs in others 

Spotting when someone else is thinking about suicide can be difficult. But, if you notice any of your loved ones exhibiting the following signs, then it might be time to step in:  

  • They talk about feelings of hopelessness 
  • They have sudden episodes of rage and anger 
  • They act recklessly and take part in risky activities with no concern for the consequences 
  • They say they feel trapped, and that they can’t see their way out of their problems 
  • They self-harm (this includes misusing drugs or alcohol) 
  • They become increasingly withdrawn or appear anxious and agitated 

The good news is that, according to Mind, the majority of people who have experienced suicidal feelings go on to live fulfilling lives if they get the support they need

How you can help 

If you do think you or someone close to you is experiencing any of these feelings or showing any of the above signs, there are many organisations that can give you the right advice and support.  

If you’re worried about someone or feel like you could do with chatting to a trained, impartial professional, then do not hesitate to contact 1 of the below free helplines. Alternatively, contact your GP or call NHS 111 for an emergency appointment.   

Samaritans 

Call 116 123 any day, any time. If you prefer to express your feelings in writing, email gro.s1575909075natir1575909075amas@1575909075oj1575909075

Campaign Against Living Miserably (CALM) 

CALM is a resource for young men who are feeling unhappy. Call the helpline on 0800 58 58 58

PAPYRUS 

This voluntary organisation aims to support young people thinking about suicide and those who are concerned about a young person. Call 0800 068 41 41

✌🏽&❤

Sam xx

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