Tag Archive for: fatigue

A day in my life

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I thought I’d give you a glimpse into a day in my life when I’m presenting on the radio for the BBC.

If you don’t know me, I have an ileostomy because of Ulcerative Colitis and two hernias, I’m awaiting surgery to repair these and it’s going to be my 8th operation.

I’m struggling a lot with pain and fatigue and so it’s tough to be working right now but I’m plodding through and I love being on the radio so much! I talk about managing fatigue, counting spoons and weighing up whether I can take painkillers or drive a car.

You can watch a day in my life here.

You can find my usual weekly show Nowt So Strange As Folk here and the show I covered here.

Enjoy!

Sam x

Stupid bloody fatigue 

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Sorry, I know that isn’t the most mature title but I’m pissed off.  Yesterday, for once, I felt like I had energy, I had all the spoons in the world. I was living in a spoon factory.

If you think I’ve lost my marbles then go have a read of the Spoon Theory.  “It’s a disability metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness.

Spoons are an intangible unit of measurement used to track how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person “recharges” through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.”


Anyway, I had allllllll the spoons yesterday and so I did what I always do when I feel good which is, too much. Too much of everything. Don’t get me wrong, I wasn’t out raving. My version of too much is working, cleaning, cooking tea, playing with the dogs, having a bath.

Rock n fucking roll eh?

I felt like maybe I had turned a corner and that my energy levels were up and the fatigue had gone. Stupid, stupid me.

I woke this morning feeling like I am dead. Every joint is stiff and painful. My head is full of cotton wool. I feel like I haven’t slept in a year. I can barely move. Imagine you have a stinking hangover and you ran a marathon yesterday, that is how I feel today (and most days).

And so I’m mardy. Man, I am a grumpy fucker today.

I feel like yesterday was some sort of sick joke that only occurred to make me remember what it’s like to feel human so today I can just feel the full force of the shitstorm that is my life.

I’m always exhausted. And today I feel shit about it. I almost wish that I hadn’t felt good yesterday and today feels so much worse.


Sorry for the whinge, but fatigue is probably the worst thing I deal with. It sucks and I can’t put a happy face on it today. My mood has dropped through the floor today and I can’t see the silver lining.

And so I’m going to wallow.

Because some days, wallowing is ok. Some days, it is ok to have a face like thunder and feel like shit, it’s ok to not feel positive, it’s ok to to be miserable.

So here’s to all the badasses who need to wallow sometimes.

Sam xx

Debbie Downer

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Things aren’t brilliant at the minute.  I’m still really struggling with fatigue, I am so exhausted all the time, and this brings my mood crashing down, I feel sad, guilty and useless.  I am still waiting for a date for my hernia operation, the hernia isn’t too big but it aches constantly and I have to wear a big support belt to hold it in if I exert myself.  My anxiety levels are sky high when I think about going under the knife yet again.  We are dealing with some really stressful parenting problems that are filling my head with stress and making me feel quite isolated.

And then two days ago, whilst washing the pots, I cut the back of my hand on a glass quite badly.  After a four hour wait in A&E with the skin flapping off my hand, doctors glued it up and strapped up my hand.  They said I was very lucky and only just missed the tendons, as they lifted the flap of skin, you could see all the tendons and muscle moving and the bone of my knuckle!

bandage hand

It’s all strapped up now, but is very, very painful, my hand is swollen and I can’t move the first finger at all meaning I am pretty one handed at the minute.  I can’t believe how difficult life is with one hand!

And this may sound pathetic, but it has been the straw that broke the camels back.  I am done in.  I felt useless enough with the hernia and fatigue, I am doubting myself as a good parent and life is kind of crap,  but now not being able to use my right hand has floored me.  I know it will heal quickly and within a week or so I am sure I will be fine, but I am gutted how little I can do for myself.

Even typing this is a nightmare, I am one fingered left hand typing and so I will keep the post brief as it is taking so long.

I’m afraid I have little to be positive about today.  Life is pretty sucky and though Im sure there is a silver lining somewhere, I can’t find it right now.

The only positive is that I deal with everything with the awesome and unfaltering support of my husband, and though things aren’t great, at least we are together.

I will try and be back soon with a more shiny, happy outlook!

Sam x

Life with chronic illness – what it's really like

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“Get well soon!” That’s just one of those every day sayings right? But what if you have an illness that you will never get better from? The worst part about having a chronic illness is that it is a life sentence, unless there is some miracle cure, if you have a chronic illness, it will be with you for forever, there is no getting better soon, no happy ending,  there is no end in sight, there is no cure or end game.

And that is why, often it isn’t the physical pain that is the hardest thing to deal with, it’s the emotional pain that goes along with it.  The guilt, the idea that you are a burden to those around you.  It can feel like you are being crushed, that the illness is drowning you and swallowing up the person you are, leaving only this shadow of a person, a patient, weak, ill. It is so hard to deal with this.

How on earth can you fight this emotional suffocation when the root of it is never going to leave you?  If you have a ‘normal’ illness, you see the doctor, get a diagnosis, receive treatment and get better.  Chronic Illness just doesn’t follow that path.  Often diagnosis is difficult as the symptoms can be confusing and varied, it is so hard to quantify a tiredness that never goes away, or a feeling that your limbs are lined with lead.  How do you explain that your mind whirs constantly whilst simultaneously feeling like it is filled with porridge?

sam cleasby ibd blogger sheffield chronic illness

Being ill in this way is living with the unknown.  Every day is different, it’s hard to plan when you have no idea how you will feel when you wake up, not knowing whether you will feel ok or like you are 100 years old.  And so it is hard not to feel anxious, depressed or completely lost when you are in living one huge question mark.  There are constant questions and often no answers.

When people say “Get Well Soon” or ask how you are feeling, it is an uncomfortable exchange, you can either lie and say ‘fine thanks’, or horrify them with honesty ‘Well I have a slight blockage, a hernia, I have been to the loo 16 times today, the acid in my poo has burnt the skin on my bum and I am so tired I feel like I am dying’ or the one I usually go for is ‘getting there!’ with a cheery thumbs up…

People don’t know how to deal with chronic illness, both the person who has it and the people around them.  There is no guidebook for lifelong illness, no way to answer all the questions because it is so personal and there are so many illnesses that are a lifelong battle.

When you have an autoimmune disease, your body is literally fighting against itself.  The physical side of it is all through the body, living with daily pain, fatigue, aches, toilet trips, medication, food intolerances along with hospital trips, surgeries, treatment.  It is, at times, too much to bear.

But mentally and emotionally it is devastating.

The title of this post is ‘what it’s really like’ and I want to try and explain how I feel mentally…

I feel like my body is a failure, that it lets me down constantly.  I feel guilty.  I feel like a burden to others.  I feel like I let down people around me.  I feel like someone has a grip on me, a crushing hold on my chest that is squeezing the life out of me, holding a pillow over my face.  I am exhausted from trying to be stronger than I feel.  I feel a sickly jealousy when I see healthy people.  A heavy hearted knowledge that my illness affects my husband and children, that I am not the wife he deserves or the mum they need.

I feel a sadness that sits deep in my bones, a guilt that is a lump in my throat stopping me from speaking and an embarrassment that my body is so broken.

exhausted quotes chronic illness

That is a bad day.  On a good day where I have little pain, few toilet trips and energy in myself, I feel upbeat, I feel proud of myself, I enjoy life because I know this healthy feeling may only be brief, I love harder, I am more open, I laugh longer, I am silly, I am fun. I have hope.

And hope is key.  Without hope, we have nothing.

This is life and so you have to learn to live it.  And LIVE well.  Your life may not be the one you have hoped for, the life you ever imagined.  But is the one you have and there is nothing you can do to change that.

You can’t take anything for granted, and sit on your laurels, you are ill but at least you have a life, there are many facing cancer and other illnesses that are terminal and so you can’t feel sorry for yourself.  (Not all the time, but sometimes everyone needs a full on mope!)

You learn to embrace and enjoy every good day you have, as you don’t know when the next one will be.  You learn to appreciate the small things, the good things in your life.  You take control of your own destiny and try everything you can to make your health better, through diet, medication, alternative therapies, talking, sharing, living…

Being sick makes you a lot of things, many negative, but some can be positive. Strength. Weakness.  Empathy.  Guilt.  Wisdom.  Fear. You have to take the lows, but learn to see, embrace and appreciate the highs too.

What is living with a chronic illness like? This is my story, but ask others.  You have a friend with ME/CFS? Lupus? Rheumatoid Arthritis? IBD? Don’t be afraid to ask questions, talk about it, tell them you want to hear how they actually are, not just ‘fine’.

The isolation attached to Auto Immune and Chronic Illnesses is immense and I feel that if we could all talk a little more about our lives, that we can help each other to bring discussions about illness into everyday life and make a difference to so many people.

This is my life with chronic illness.

Tell me about yours…

Sam xx

Tired, emotional, guilty

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I’m so tired. And the tiredness leads to anger, hurt, guilt.

I have no idea whether fatigue is something I just need to accept? Whenever I mention it to the doctors they look at me like I’m daft. “You’ve been through a lot” they say, “give your self a break”, “it all takes time”. Perhaps I expect too much of myself, but I really just wish I could be normal.

Every night, I get up once or twice to empty my jpouch, several times a night I wake thinking about whether I need to go to the loo. Since surgery I tend to have these vivid dreams, you know the ones where you feel like you’ve had a workout when you wake up? I also sometimes have stomach pains, butt burn and accidents.

So when morning comes, I just can’t open my eyes. I just don’t hear the alarm and Timm gets up with the kids. Every day. And the guilt builds… I wake up feeling so drained and exhausted that I can barely function. My limbs are like dead weights, my head fuzzy, my brain screams at me to go back to sleep. I feel lazy and guilty.

Timm leaves me to sleep as long as I need to. He never mentions it apart from asking if I had a bad night. But the guilt inside me is enormous, I feel I’m letting them all down. I feel like everyone thinks I am lazy.

I usually get up at 9am, a full two hours after I should get up. Some days I manage to get straight down into the office, some days I work from my bed. By midday I feel more energised and I try and get as much as I can done, but by 4pm I am flagging massively and could quite easily nap. Evenings are better for me, I feel more awake and often try and get housework done in this time. Then I’m usually in bed by 11pm (sometimes way earlier).

I don’t know whether it’s my routine that isn’t helping? Some nights, despite being completely exhausted I just can’t get to sleep and lay awake for hours.

Or I wonder whether it’s my diet? I have found I am now really intolerant to most vegetables and so my diet is quite restricted. The lack of vitamins and minerals worries me. I’m waiting for an appointment with the hospital dietician and have thought about asking to have my b12 levels checked. (People missing certain parts of the colon will have difficulty absorbing vitamin b12 and some need regular injections).

Sometimes I realise I don’t remember what normal is. My normal is so far away from other people’s that I wonder if my comparing myself to them is stupid?

When I say I’m tired, others talk of their tiredness too, and I think maybe I’m just not as tough as most people! Then I remember that my body has been through so bloody much in the past 18 months. That I’m missing an organ, that I’m learning how to use my pouch, that my body fights against me eating most healthy foods, that my immune system is knackered.

The thing I need to deal with the most though is the guilt. I feel like I need to apologise to Timm for how rubbish I am in the mornings. I feel like a bad mum and a rubbish wife.

I feel I need to explain to everyone that often I have a big front on. And that front is the mirage to tell you “I’m fine!” “I’m not weak” “I’m as good as you” “I don’t need anyone’s help”.

So when I’m seen on Facebook or instagram in the pub or walking the dog, know that it takes a big effort to do that, and I do it because I want to have the same abilities as others, I don’t want to be sick.

Know that every journey or trip requires planning to know where toilets are, a packing of wipes and underwear, a knowledge that using public toilets is an embarrassing experience because of the noise, that I’m using up valuable spoons to do that thing and will suffer for it later.

Please just have a little understanding that despite my brash, shouty, activist exterior I am still healing, still learning how to accept and use my new body and still dealing with the emotional trauma that the past 18 months have thrown at me.

Sam ✌️&❤️

Fatigue and Chronic Illness

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I was talking to another j pouch-ee yesterday and she said something that struck me as so true.

You wake up and think you could take over the world. Then you try to get up and your body says “no way, you are 90”

You see, one of the hardest things about chronic illness is the fatigue. Fatigue isn’t being tired. It’s an exhaustion that is bone deep, a feeling that your body is giving up on you. It’s feeling that every fibre of your being is suddenly being affected by gravity more than anything else.

It was the idea of your brain and body being disconnected in some way that really made me think. I wake up most mornings with my head filled with ideas, plans and lists of things to do that day. In my head I am powerful and could rule the world!!! But no one told my body that. The head is willing but the body is failing.

The psychological implications of this are feelings of failure, guilt and disappointment. I worry that people think I’m lazy, that I look ok physically so why am I in bed? I worry that others will see me smiling in a photo on Facebook and then wonder why I’m saying that I’m physically exhausted and struggling. I feel guilty that the lives of myself and my husband revolve around my illness. I feel guilt that my input to our business is so minimal. I think about how much I feel like a failure, that the physical work I do is dramatically lower than the amount I’d like to be doing.

I am disappointed that my recovery is so slow. I was told it takes around two years to fully recover from j pouch surgery and I know that my body has been through so much this year and I need to give myself a break. But I just wish I was back to ‘normal’, I would love to be full of energy and ready to kick some arse.

I would just like my body to listen to my mind. My mind is filled to bursting with ideas… It’s constantly whirring and I just wish I had the physical energy to fulfil just some of those ideas day to day.

There is a huge problem of a lack of understanding, people don’t understand and comment on chronic illness with a condescending and patronising tone that they somehow think is helpful. I was sent this chronic illness bingo sheet today by a friend and I think I could mark of every single one!!!

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Chronic illness isn’t just a disease you have to deal with physically, it is mental, emotional and social. It can be an invisible illness that makes the sufferer feel isolated and can spark depression and anxiety.

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I suppose today’s post is about speaking out, educating and sharing my experience in the hope that next time you, dear reader, are in contact with someone else with a chronic illness that you will be a little more open minded, a little more sensitive and a little more caring.

Crohns and Colitis Uk have produced an information sheet on IBD and fatigue, take a look for some official advice.

They also have a site about the studies going on right now, take a look here.

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Love Sam x