Posts

Acceptance

I am in the middle of having therapy, it is trauma focussed CBT (Cognitive Behavioural Therapy) along side talking therapy. This is to help me with the feelings I have had around years of illness, surgeries and ongoing illness. Though I was nervous going into it, it has been hugely helpful to me. I wanted to talk a little about acceptance today.

In my head, accepting my illness felt like giving in, like losing hope and accepting that my life will always be a bit shit. But in working with my therapist, I am learning about how that warped view is holding me back. Acceptance to me now is about giving myself the freedom to let go of all the negative feelings and learning how to use coping strategies to live with chronic illness in a way that allows me to have the happiest life I can.

I am realising just how much guilt, shame and anger I have carried with me. Guilt in how my illness has effected my family and friends, shame of the imagined failure of my body and anger that I am not ‘normal’. And what I have learnt is how those feelings are holding me back and don’t have any positive outcome.

woman with NG tube and a bag of bile

I have been incredibly poorly for half my life now, starting with ulcerative colitis and leading to multiple surgeries to remove my large intestine, then my rectum and onto life with hernias that cause daily pain and struggle. My first surgery was in 2013 when I had my first ileostomy formed and my last surgery was in February 2020 where I had a lot of complications, including my kidneys shutting down and I nearly died.

Till my last surgery, I was always hopeful. But that hope was a dream of returning to a life with no illness or pain. And so after my last op failed yet again I was told that I had reached the limits of medical science, and that it was now a matter of managing my symptoms and achieving the best quality of life I could with pain and illness. As my doctor said this to me, I felt crushed. I felt that I had no hope any more and that I was being given a long, slow death sentence. I was reeling and didn’t know how I could possibly live like this.

That’s why I started therapy, to help me deal with these feelings of utter hopelessness.

And slowly but surely, it is working. I am letting go of the negativity and beginning to work on making my life the best it can be. I’m questioning myself when that mean spirited voice we all have in our head and telling it to shut up! It isn’t the big things so much, as the little ones.

Accepting that it is ok for me to get a taxi to work. Before I would force myself to get public transport because I refused to accept that I couldn’t do a ‘normal’ thing like getting the bus and then doing a full day at work. It’s almost like I was punishing myself. Now, I get the damn taxi if I need to! And I celebrate the fact that I am well enough that day to go to work.

I accept that I may not ever climb a mountain but that is OK. I may never run a marathon, or cycle for miles, or swim the channel. Before I would beat myself up about these things, so angry that my illness has robbed me of opportunities. But this anger has zero positive outcome, so why I am wasting my time and energy with it.

I can give up these ideas of things that most people in the world will never do and just revel in the things that I can do. I have a job I love, working with my husband. I have wonderful friends, fantastic kids and I am studying Fine Art at university at the age of 40! I have this blog that allows me to connect with people all over the world and offer support. I love to travel both abroad and in the UK in my camper van, I have visited some amazing places around the world. I have a nice home, I am safe and secure, I love and I am loved by some of the most brilliant humans in the world.

I was wasting so much effort worrying about the things that I cannot do that I lose sight of the life that I do have. And it is pretty bloody good.

I’m not 100% there, but every day I am learning acceptance.

I will probably always live in daily pain, have to take many medications every day and not be physically able to do everything that I want to do. But that’s ok because it is the life I have and my illness is just one part of that life.

I love and I am loved.

I think if we can say that, then whatever our other circumstances, we are pretty lucky.

Peace and love

Sam xx

Acceptance of a life changed

I sort my medication out on a Sunday. I have one of those pill boxes with all the days on it and separate compartments for times of the day. On a Sunday, I sort out my medication for the following week, bursting the foil packets and popping out the pills. Monday: Morning, Dinner, Tea, Evening. Tuesday, Wednesday, everyday. I look at my bedroom bin filled with the empty containers. I scroll through my repeat medication list on the website. Scroll, I actually scroll as it’s so long.

But this week it feels different, I suddenly recognise that this is routine now, habit. That those repeat prescriptions are a sign of a life changed. The repeat, repeat, repeat, its my life but not the one I expected to have. I am 40 this year and I suddenly see myself as how I am. And its a shock you know. It shouldn’t be a shock, its been eight years now of surgeries, hospitals, medication, pain, struggle. But I feel the shock and wonder if this is acceptance?

I thought I had dealt with these feelings, I thought I had accepted. But maybe I only accepted a temporary change and thought at some point, my life would return to ‘normal’. Maybe that is my mistake, thinking that ‘normal’ meant the same as before when in reality, every persons normal is different at different points in their lives.

I feel loss. Like I don’t know who I am any more. When I look in the mirror I am not too sure who I see looking back at me and that scares me. The person I thought I would be, the person I was has gone. Well maybe not gone, but is buried somewhere that I am not sure I will ever find again. And I am not sure who is left.

I suppose that what I am trying to describe is grief. I know I need to reach acceptance and to get there I think I need to grieve a little. And I feel bad saying this in a time when so many are actually grieving the death of their loved ones, it feels selfish. But I do feel like I am filled with grief.

I hate that I take so many pills just to get through the day. I hate that I am weak, and tired, and in pain each day. I can’t stand the limitations in my life, that I can’t walk far, that I can’t do the things I want to do, the things I thought I would be doing. I want to go for long walks, to explore, to run and jump and skip and play and dance.

I hate how my body looks. Which is hard to admit as I think I had gotten to a place of self love. But now I look at myself naked in the mirror and all I see are scars, and lumps and I feel I look grotesque and disfigured. That is a painful thing to say here, because I know that if I heard anyone say that about themselves then I would leap to their defence! I would tell them they were beautiful and perfect and that they were the king or queen of the whole god damn world!!

I feel that I let people down all the time. That my illness and pain makes me not enough. Im not a good enough mum, not enough of a wife or a friend. And that is hard to accept. Because I know I am trying my hardest and actually I know that is enough. But it feels like such a raw deal for the people I love.

I have been looking back on old photographs recently and I see myself and I wonder where she went. I don’t know, it is weird and I don’t even know if this post is making sense. I just feel so crappy and I thought I would blurt it all out on the page so apologies if this is a bit all over the place but I suppose it is because I am all over the place.

But as negative as this post is, I think that the recognition of how I am feeling is a step forward in the journey of acceptance.

I try and find the positives, and I know that I am incredibly lucky in so many ways, I have a brilliant husband and children and so many brilliant friends and family. I live in a nice home, I am safe, I have food in the cupboard and money in the bank. I am privileged in so many ways and I am grateful of all the good things in my life.

I don’t think my life will ever look like it did before all the surgeries started, but maybe different is ok. Different doesn’t mean worse, it just means an alternative to what I expected. So I need to carry on learning to accept and having gratitude and love for the things I do have and for the future, however that may look.

Peace and love

Sam

Chronic illness: When to push and when to rest

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

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

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

I just want to dance

It’s been a busy week, work, radio show, hospital visits and finding out that my next surgery is going to be a tad more complex than I originally thought. I wrote about it in my last blog, so I won’t bore you again but basically, it is going to be a long op with an even longer recovery.

I am really struggling with pain, I take a lot of painkillers every day, spend a lot of time laid in bed and pretty much have a hot water bottle strapped to me at all times. There are a lot of things worrying me right now, but the main thing that is upsetting me is that I just want to dance.

I know this might sound stupid, I should be concerned about the upcoming op rather than having a boogie, but honestly, I’d give anything to just be able to have a full on, throwing myself about the room, bounce up and down, shake what your momma gave you dance. I’m a terrible dancer, but I love it, I enjoy having a good old boogie and I miss it!

I’m so fed up of the limitations of my body, the pain is constant, gnawing and just being stood upright for more than 10 minutes is really painful. I want to walk my dogs, I want to ride a bike, I want to go swimming, go to yoga, work in the allotment, but most of all I want to dance. I don’t care if it is in a club or a bar or just in my kitchen, I want to dance my heart out without feeling like my insides are going to burst out of my belly.

There are a lot of struggles when you have a chronic illness, the ulcerative colitis was debilitating for years and then I thought the ileostomy would be the answer to all my prayers. It has just been one thing after the other, going through j-pouch surgery and then 18 months of chronic pouchitis till I had to have it removed along with my butt hole was such a challenge. Now the past few years, my life is just taken over by the hernias and the pain.

Since September last year, when I got my newest parastomal hernia, life has been getting progressively harder. I now have two hernias, the parastomal one is huge and it’s a constant dragging pain, the smaller one is actually a lot less painful most of the time but then every now and then (if I cough, sneeze, strain) the hernia comes out and it’s like being stabbed.

sam cleasby sheffield blogger chronic illness

I can barely walk most days, sometimes I feel much better and I am able to walk a little and get out of bed but I know those days are followed by worse pain. This week, after hearing about how complex the operation is going to be and that I have a 75% chance of complications, I just thought ‘fuck it’. I have pushed myself and been out with friends for three days in a row, painful, exhausting and fuelled by painkillers, but I just wanted a little bit of normal, a bit of fun, just some time away from my bed.

I’m trying to not let this all get me too down. I mean, I am accepting it and being reasonable, but I have come off my antidepressants and so I am very aware of my mental health right now and monitoring if my sadness is within ‘normal’ ranges, if that makes sense. And so I can’t let myself sink, I need to keep my chin up and be accepting of my life but also keep positive for the future.

There are many things that keep me going when things are tough, my family, friends, work. But the one thing I keep thinking is that I am going to kick ass at this recovery, I’m going to follow the rules, rest, exercise, take time off work, no lifting etc blah blah blah and then this WILL BE a successful op, I will be totally sorted and by Christmas 2019 I will be dancing, arms in the air, ass shaking, wiggling hips and dancing my heart out and it will be all ok.

Because I have to try and think positively, even if inside I am terrified that things will go wrong and pissed off that this is what my life is like. I need to focus on something, and to be honest, there’s not much point in thinking too big, honestly, I will just be happy when I can dance again.

What is the one thing that if I could wave a magic wand right now, you would be able to do?

Sam xx

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

 

 

Flu jabs and chronic illness

Just a friendly reminder for anyone with a chronic illness or vulnerable people that it is flu jab time!

Flu jab chronic illness

 

The NHS says:

Flu vaccination is available every year on the NHS to help protect adults and children at risk of flu and its complications.

Flu can be unpleasant, but if you are otherwise healthy it will usually clear up on its own within a week.

However, flu can be more severe in certain people, such as:

  • anyone aged 65 and over
  • pregnant women
  • children and adults with an underlying health condition (such as long-term heart or respiratory disease)
  • children and adults with weakened immune systems

Anyone in these risk groups is more likely to develop potentially serious complications of flu, such as pneumonia (a lung infection), so it’s recommended that they have a flu vaccine every year to help protect them.

Chronic illness flu jab NHS

Ive had flu once and ended up in hospital for a couple of weeks, it was horrific! I’ve never felt so ill in my life. People say all the time “oh I’ve got flu!” The chances are they don’t!

The doctor told me it’s the £10 note test, if you have flu and someone told you there was a tenner on the floor outside your house, you wouldn’t have the energy or inclination to move. Not sure quite how true that is but when I had flu it felt like even my hair hurt. I couldn’t move and even breathing hurt.

I had to call my GP to get on the list as Id been missed off, but now I get an annual letter to go in. It takes a couple of minutes and it’s all done.

If you are unsure whether you should have it or not, get in touch with your GP for more advice.

✌🏽 & ❤️

Sam xx

 

Northern Blog Awards – I won!!

Last weekend Timm and I went to Manchester as I had been nominated and shortlisted for the Disability and Chronic Illness best blog. I was totally honoured and really pleased to be shortlisted for the second year running and though I didn’t expect to win, we went along to hang out with some amazing bloggers and have a night out!

And so it was a total shock to actually win!!! 

Northern blog awards disability chronic illness

It was a wonderful night and the first award I have ever won so it is so hugely appreciated and I was a little overwhelmed.

Northern blog awards

Take a look at a little video of the evening here 

Huge thanks to everyone who voted and to the Northern Blog Awards.

✌🏽&❤️

Sam x

Chronic illness and guilt – when we can, we do

I got a message from someone on twitter today from a mum who is facing stoma surgery.

“You have made a difference. You made me feel ok about stoma surgery, you help me to remember I’m not the only one feeling like this. These school holidays are breaking my heart, I feel so guilty for not doing things with the kids. Thank you for reminding me I’m not alone xx”

I responded telling them that today I’m in bed as all my kids are on computers and though I feel bad about this, I remind myself that when I can, I do.

It struck me that this is a good motto for anyone with chronic illness who is feeling guilty.

 

There is so much guilt in living with chronic illness or disability, it’s wrong, it’s unhelpful and it’s crap but almost everyone I speak to has had feelings of guilt at some time in their lives.

Guilt that they’re letting others down, that they’re not good enough parents, partners or friends. Guilt that they don’t pull their weight with work, guilt for taking time off. Guilt that their houses aren’t tidy enough, their dogs aren’t walked enough. Guilt that they sometimes eat fast food as they’re too tired to cook. Guilt that their kids have to care for them when they want to be caring for the kids. Guilt that family days out get cancelled or become about their illness rather than the fun of it.

Its easy for me to say that it needs to stop, that these things we feel bad about are out of our control and that guilt doesn’t help anyone. But I’d be a hypocrite. Because I feel all these things too.

But I do remind myself that when I can, I do.

When I can take my kids out for the day I do. Yes, it’s sometimes to the cinema as I know I’m not strong enough for a more physical day but I do.

When I can, I work hard, I put my everything into careers that I love.

When I can, my house is clean and tidy (and when I can’t, I hire a cleaner!!)

When I can, I see friends, I think about others, I’m there for them.

Life can be tough, but remember…

When we can, we do.

 

✌🏽& ❤️

Sam xx