Tag Archive for: self love

Chronic illness: When to push and when to rest

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Something I say a lot is to listen to your body, but when you have a chronic illness, the messages you get from your body can feel warped and unclear. When you are unwell for a long time, possibly every day forever, how do you know when to push yourself and when to rest?

My background

I was diagnosed with Ulcerative Colitis in 2004, in 2013 I had my colon removed and an ileostomy formed. This was meant to be my ‘cure’. After living with colitis for 9 years and going through many flare ups, pain, incontinence and medication, I was told that as colitis is only in the large intestine, that in removing it, they are essentially ‘curing’ the disease.

PERFECT! I thought. Only it wasn’t quite so clear cut. In the past 7 years, I have had 9 major surgeries. I had a pouch formed to reverse my stoma, only I had constant chronic pouchitis with it which felt worse than the original colitis! Then I had that all removed, including my anus and rectum and a permanent ostomy formed.

Then came the hernias, both incisional and parastomal. This meant that I have had to have multiple surgeries attempting to fix these issues including a full abdominal reconstruction in February this year. But you know what? I still feel like crap. I have a LOT of pain where the mesh is holding my body together. When I eat, food gets stuck and causes blockages, they think this is due to adhesions. I still have the joint pain and the fatigue from the Ulcerative Colitis and generally, my health sucks and I feel ill all the time. And there is no cure.

ulcerative colitis surgery sub total colectomy with end ileostomy

But I don’t want to give in to this. I am 39 years old and there is SO MUCH I still want to do. So I push myself to do more and keep going. And this is important, if I didn’t push myself, I really think I would lose it, if I just stayed in bed, in my home and didn’t push my boundaries, I don’t think my mental health could take it. But of course, I also still listen to my body and rest when I need to.

When to push, when to rest?

So when to push and when to rest? The only person who can answer this is you and it takes time to get to be in tune with your body and to learn what your limits are. With chronic illness, there is no black and white. What is right for you one day will be totally wrong the next. Week to week, day to day, hour to hour, our bodies are changing and you really have to learn to go with the flow (which is hard for a control freak like me!)

Self care is vital. Rest, medication (if you take it), exercise, sleep. I have found it so hard to be able to do these things without guilt. To have a rest day, or a bad day in bed when I can’t do anything, I find it tough to not feel like I am letting people down. But I am learning to accept that it is what I need to be able to give on other days.

wild swimming chronic illness

And on my good days, I push. I go for a walk or a swim, I see friends, I do work, I make plans. I cook, I clean my house, I stay up late and hang out with my family. I make the most of those times and I appreciate how precious my health and energy is. When you have days where brushing your teeth is too much, you really find joy in the days where you can walk your dog.

You aren’t alone

I write this I suppose for two reasons. On one hand, I just want others in a similar place to know they aren’t alone. Because this shit is isolating. It is a mean spirited devil on your shoulder telling you that you are useless, that you are a burden, that your life is worthless. I never feel more alone than when I am in pain at 3am, checking the clock and counting up the abacus of ‘if I fall asleep now, I’ll get x hours sleep’.

Being chronically ill is tiring, it’s a full time job and it can be totally overwhelming. And so if one person can read this and realise they aren’t alone, then it will be worth spilling my guts to you all.

sam and Timm Cleasby

The other reason I write this is for those who aren’t chronically ill to try and explain what life is like. I know sometimes people look at me and see my social media and can’t understand why one day I am in the gym and the next I am bed ridden. Or how I can go away in my camper van when I couldn’t meet them for lunch that week. Or why I make these bonkers plans to fill my life with challenges when I tell you that I am exhausted doing nothing.

I’m sorry I don’t have an answer for you on when to push and when to rest other than to say to listen to your body, however confusing that conversation can be. And if you have the energy, then speak about your life, tell your friends and loved ones, make talking about chronic illness normal. But above all, look after yourself and give yourself some love, you are working harder than anyone will ever understand. And you aren’t alone.

Peace and love

Sam xx

When everything sucks, build a den

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

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

Build a den in bed

Building a den

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

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

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

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

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

And that Cleasby brought me joy ❤️

You can watch the video here.

✌?& ❤️

Sam xx

So I have something to tell you…

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I have been quite open on here about the ups and downs of this journey of mine, through meds, hospital stays, 5 surgeries, months of recovery and the multitude of things going wrong, I have documented the lot.  There are times when I feel positive and upbeat and other times when I feel thoroughly defeated.

You may have noticed that I didn’t blog for a good few months this year (from April to July) which is the longest time I have abandoned this place for.  The reason for that time away is that I am really struggling mentally.  And after months of hiding my feelings and plastering a smile on my face, I decided to start seeing a counsellor a few weeks ago.

I haven’t told many people this, I suppose I just wanted to keep it for me for a while, to try it out and see how I felt about it.  I suppose there is a small part of me that is a little embarrassed, I am not from a place or family that talks about needing support or showing any vulnerability or weakness.  I know this is bullshit, but I am fast discovering just how much crap my upbringing and environment has subconsciously taught me.

I don’t want to go into it too much, it is very much a private thing between me and her.  But I do want to say that just a month in, and I am feeling the benefit of it week on week.  Don’t get me wrong, it is HARD.  We are talking about things that hurt. A lot.  We are talking about things that bring a lump to my throat to just think about, let alone say them in front of another human.  But it is helping me to start to learn about myself, to pull things apart and think about them in a new way.

It is helping me to not only understand myself, but to start to think about the people in my life and how they are feeling and how their actions have affected me.

sam cleasby blogger mental health counsellor sheffield

It’s weird, I am quite controlled, yet when I am there, things come out of my mouth that I didn’t even know I wanted to say, that I hadn’t even thought about.  And her responses sometimes floor me.

I struggled with the very idea of counselling because I struggle with people who make excuses for their own behaviour (she has made me realise that growing up with alcoholics and drug addicts will do that to a person!). And so there is a big part of me that feels like I shouldn’t be there complaining, that I should just figure my shit out and deal with it myself.

But another part of me has realised that figuring my shit out requires the input of a very clever and compassionate therapist at this point in my life. And that’s OK.

I thought about whether to share this with you or not, and I came to the conclusion that if I do this, I do it honestly. I don’t want someone reading this blog and only seeing the Mary Poppins, sweetness and light, positive rainbow side of me and thinking ‘oh. why do I feel so shit and she is ok?’ I want to share the highs, and the lows.

I want to tell you all, and myself, that even when things are awful, even when you want to hide in bed or run away, when you feel like you are a burden to those around you, when you wonder what the point in carrying on is, when the world feels like a dark an scary place; you aren’t alone, I am here and I understand.

Love Sam xx

 

Every now and then I fall apart…

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If you aren’t singing Total Eclipse of the Heart by Bonnie Tyler after reading that heading then what are you doing with your life? 

Ok, enough 80s awesomeness. I’m not feeling awesome. And that pisses me off. 

After 3 1/2 years of surgeries, scars and ostomies I have gotten used to this body of mine. More than used to it, I’ve learnt to feel proud and brave and strong. I’ve learnt to love it. 

Yet every now and then I fall apart. It’s a weird one as I do genuinely love this body of mine, fucking hell I talk about it enough. I blog, vlog, Instagram and tweet about it. I get paid to stand in rooms full of other humans and talk about it for fucks sake. But sometimes, just sometimes it catches me off guard and I feel shit. 

I was listening to the Guilty Feminist podcast (you should all go listen to this IMMEDIATELY!) and one of the women was saying that sometimes when she hears people telling her she should love her body she thinks ‘Fuck you! You don’t know my body, it’s a right bitch!’ and along with making me laugh, it made me think about how it’s ok for me to sometimes be thoroughly fucked off with my body. 

It let me down! It got sick. And this stupid kind of sick where it’s hurting itself! Auto immune disease means my body is literally attacking itself. It’s like when your older sibling takes your hand and slaps you with it shouting ‘stop hitting yourself, stop hitting yourself’ but there’s no old, mean brother or sister. You’re just slapping your own face. Stupid body. 

Then doctors fixed me by taking my bowel out and sewing up my arse hole.  Man, I miss farting.  My ileostomy is the end of my small intestine pulled out through the wall of my abdomen. On good days I say it looks like a rose bud. On bad days, I think of it as a scary leech face. 


I wear this bag 24 hours a day. And it’s literally the butt of every joke about something old, smelly or disgusting. Society thinks of colostomy bags (they’re usually not well informed enough to know about ileostomy bags) are gross, hilarious or downright disgusting. And that hurts. It hurts that most people see my illness as an insult. 

Even in the most well meaning of places I hear negativity. I heard someone saying that if they were about to be sexually attacked, they’d shit themselves. Because that makes you gross, disgusting and definitely not sexy.  As a woman who shits in a bag on my belly I can tell you that one knocked my confidence. 

I mean she’s right, shit isn’t sexy. (I suppose it is if you have a fetish in that!) but it made me think about how someone like me can be seen as sexual when every romantic liaison comes with an ostomy bag thrown in? 

Usually I cope well. Mainly because I’m fucking awesome. But every now and then I fall apart. 

Tonight I got out of the bath and changed my bag. I looked down and it caught me off guard. I cried. A lot. I sat in the bathroom wishing I had a pretty and perfect body. I’m a feminist but… (you’ll get this when you’ve listened to the guilty feminist podcast!) I wished my body looked like a woman from a magazine. 

Worry not, I’ve pulled myself together and reminded myself that even the women in the magazines don’t look like women in magazines in real life. I’ve reminded myself that there’s no point wasting time wishing this away, this is my lot now. I have no bum hole people! It’s not going to change!!! And if I ever get abducted by aliens then at least they won’t be able to probe me… 


I suppose this is why I do what I do. Why I speak openly about my illness and my body. Because though sometimes I fall apart, I have also learnt to live, thrive and kick ass with my body. 

I know how it feels to be let down by your body. How isolating and soul crushing it can be.  The road to self love isn’t all sweetness and light, no Kardashian is going to hand you a can of pop and make your world better. It takes time, work, sharing and looking hard at what you want. But you can get to a place of self worth and celebration. 

You just have to accept that even the most badass of people have times when every now and then they fall apart.