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Please don’t stop inviting me

When you have a chronic illness, one of the things that cause guilt and stress is letting people down, I hate that I am sometimes so slack and have to say no to plans, often at the last minute.  To anyone I let down, I am sorry.

But please don’t stop inviting me…

I know it is frustrating when I call (or more likely do the cowardly text) at the last minute, I am sure you look down at your phone and roll your eyes and think ‘here we go again!’ I am sorry that I cancel on our plans, but I swear, in the cheesiest of lines, it’s not you, it’s me.

Whether it is last minute pain, fatigue or anxiety, whether it is physical or mental, I know that it can seem to you that I must not care.  I know that you may analyse my excuse and logically come up with an outcome where I could make it if I really wanted to.   I know that it makes you sad, or angry, or fed up.

But please don’t stop inviting me.

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I know you have been there for me and come to my events, my parties, my coffee breaks.  You make the effort to visit me and be an amazing friend.  You put yourself out and very rarely cancel and it must be so frustrating to have a friend who doesn’t return the favour.

It must be quite difficult having me as a friend, I don’t have a normal level of consistency in my life, it is one thing or another with my health and if it isn’t a physical thing, years of living with these issues have made me mad as a bag of frogs.

But please don’t stop inviting me.

I am sorry for that time I missed your child’s birthday party, I am sorry I didn’t come on your planned trek to the countryside, I am sorry I bailed on your last party, I am sorry I cancelled our brunch date, I apologise for saying I would definitely come to that yoga class with you then abandoning you to do it alone.

I feel terrible that I didn’t call you more regularly when my problems seem to fill my whole head space, it makes me sad to know that I am not the best friend in the world, I’m sorry I wasn’t there for you.

But please don’t stop inviting me.

I know I am sometimes slack and I cancel on you.  This illness of mine sometimes makes me selfish and clouds out everything else, but know this.  I may not be present, but you are always in my thoughts, I might miss your event but I love you dearly, I bailed on your party but I am loyal, caring and my friends mean everything to me.

Even when I don’t make it to your events, please know how much it means to be invited.  Your offers mean everything even if I know I can’t make it.  Thank you for making me feel normal, for not being put off by my illness, my cancelations, my issues.

Please don’t stop inviting me.

sam cleasby so bad ass IBD blogger and writer

It takes a very special person to be friends with someone with a chronic, life long illness.  You lose friends and family members along the way when you are ill, it is a time where you find out who is really there for you.  Some people can’t hack it, they walk away and don’t want to be part of your life because it isn’t all sweetness and light.  These fair-weather friends are only there for the good times, when the shit hits the bedpan, they are out of here!!!

But the people who stay are true gems, and I appreciate the friends and family who have stuck by my side throughout the terrible lows and been there to cheer for the amazing highs.

Thank you to my amazing friends.

Thank you for never stopping inviting me.

 

Sam xxx

Things I’d like you to know from a sick person

1. I don’t need your sympathy but I do need your understanding.

2. Don’t be embarrassed. If you have a question, just ask!

3. It’s not you, it’s me. Please be patient when I can’t make events/cancel last minute/don’t return your calls.

4. Needing help and support is not easy to ask for, but know I appreciate every offer.

5. Don’t be afraid. Sometimes my treatment is scary and unknown to you. It’s ok to not know what I’m going through.

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6. Don’t be a stranger! Visits, texts, phone calls are all welcome.

7. Your children’s questions and comments are great. Don’t shush them when they point and ask, kids don’t bullshit.

8. Sometimes I don’t want to talk about it. Don’t be offended if I answer quickly and then change the subject.

9. Sometimes I do want to talk about it. Sorry if I bore your ear off with a rant. I don’t need answers, I just need to vent.

10. Sometimes it takes the strength and stamina of a mountain climber to just do the things that come normally to you.

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11. Hospitals hate flowers. But I don’t! If you want to send me them, wait till I’m home.  Then I’ll cherish them.

12. I appreciate that being my friend/partner/colleague is sometimes a bit tough. Thank you for being part of my life.

13. Sometimes I feel really sorry for myself and my head is in a whirl. Sorry for the times I hide away.

14. When you send me links to things about my illness, it means a lot to know you’re trying to understand and help.

15. It’s not all about me! Please don’t worry that your struggles aren’t “as bad” as mine. I want to know what you’re going through and help when I can.

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16. Sometimes my meds make me fat/thin/sleepy/manic/sad/weird/angry. Don’t worry.

17. I have good days and bad. Often my good days lead to bad days because I push myself too hard so I get to do nice things.

18. I’m sometimes a bad friend because I lock myself away and I’m not there for you. I’m sorry.

19. My husband and kids are going through this too. Don’t forget them. (Timm always accepts trips to the pub)

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20. This is a lifelong thing with no cure. If you can’t take the heat, get the fuck out of my kitchen.

 

Sam xx

Medical ID app

I found out about this app on the iPhone recently and thought it would be of interest to you all. 

It’s called Medical ID and allows access to some vital information on your phone in an emergency situation. It’s free, simple and easy to set up and so I thought I’d talk you through the set up process. 

Go to the Health app on your iPhone.   

medical id app apps to help with disability Go to Medical ID in the bottom right hand corner.   

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Click on that and fill in your information starting with name and date of birth and medical conditions as well as medical notes.  As I have a jpouch, I added in a note explaining that rectal exams must be taken with extreme care. 

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You can then add your emergency contacts (you can add more than one), blood type and if you are a donor. 

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Then save the information and it can be found if necessary on your locked screen by pressing emergency and then Medical ID. 

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It takes a couple of minutes but allows you a little piece of mind that in an emergency, your medical needs are right there for the people who may need them. 

Hope this helps! 
Sam x 

  

10 GREAT things about life with Inflammatory Bowel Disease

We all know that life with any chronic, lifelong illness sucks,  when that illness is Inflammatory Bowel Disease in the form of Ulcerative Colitis or Crohn’s Disease, it is shitty! (Pun definitely intended).  I am as guilty as everyone else in writing about all the negative aspects of this, I have spent two years doing just that, but I thought it time to write about the great things…

 

1. Regular new underwear.  Well, when you end up abandoning pants in sanitary bins because you shit yourself, you have to replenish the stock! Make it some nice ones.

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2. You know more about the workings of the digestive system than most people.  Including doctors.

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3. You sound like you’re carrying maracas in your bag due to all the meds rattling around.  Make the most of it and shimmy as you walk.

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4.  You become the Poo Oracle of all your friends.  Revel in the power of knowing about all your mates poo stories.

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5. You know your way around your local hospital and so never get lost.  You have been in most wards at some point, you could draw a map!

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6. You have an excellent excuse to eat crap, beige food when you are in the mood.  Yes, you need a mcdonalds, everything in there is on the low residue diet!

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7. You have a sense of humour.  Sometimes sick, sometimes inappropriate but when you have been through so much, you have to learn to laugh or you would cry.

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8. People get so used to you looking rough that when you are well and scrub up, you look amazing and people comment.

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9. You have the ability to teach those around you.  About illness, invisible disability, compassion, love and positivity.  Use it.

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10. You know that life is precious.  You have been through hell and are still standing! You know that no matter how tough life is, it is ALWAYS better than the alternative.

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Sam x

 

Going Dark

I’m not feeling too great at the minute.  Still.  My joints hurt so much, my wrists, hands, ankles, shoulders, hips… the pain is like a gnawing ache, and it moves around, floats from place to place in my body.  Isn’t that odd?

The tiredness is terrible.  I can’t wake in the mornings and then fall asleep all day, it’s the fatigue that is so hard to deal with.  The exhaustion makes me feel useless and like a sick person, it sucks out all energy, not just physically but mentally and emotionally.

I saw my GP this week and had some blood tests.  He suggested it could be a flare up of Ulcerative Colitis.  Isn’t that a joke! I thought removing my colon got rid of this bullshit but it turns out it’s all these ‘extra intestinal manifestations’ (I know this sounds like a ghostly poo but it means when the disease affects other parts of the body).

My eyes are so dry that I can’t open them in the mornings and they itch all day, my mouth is constantly dry no matter how much I drink.  My skin is dry, my legs are white with the skin coming away.

I’m going back next week for the results, if my inflammation markers are up then I potentially will have to have a course of steroids and go back under the gastro team at the hospital.  He also tested for Rheumatoid Arthritis to see if that is what is hurting my joints and so I just need to wait and see what he says on Wednesday.

Im not a great person to be around right now.  I don’t want to talk to people, I don’t want to go out.  I make myself do the things I have to do, but really want to just be hiding in the duvet cocoon.  The problem is because I talk so much normally (read: I’m a gobby cow), that when I feel hurt and sad, I go quiet and this worries those closest to me.  There’s a phrase on that TV series 24 when an agent turns off communications usually for their own safety or for the safety of those around them, it’s called ‘going dark’.

Going Dark: When an individual disappears or suddenly become unavailable or out of reach for an undefined period of time, generally for security reasons.

This describes me right now.  The only place I can deal with sharing at the moment is on my blog.  I know this can seem difficult for my husband and friends but it is all I have at the minute.

I feel so sad.  I thought all these surgeries would make me feel better (and I have to keep reminding myself that I AM better than I was) but it is hard to still be a sick person.  It’s silly because I always knew there was no cure for Ulcerative Colitis and that it is a life long chronic illness, an auto-immune disease that means my body is fighting itself.  But after everything I have been through, I just want a break.  I don’t want to be fucking ill anymore. I bloody hate being a poorly person.  I despise the burden I become to those around me.  I can’t stand that my lovely boy, the best person in my life, my husband Timm has to, yet again, bear the weight of my illness.

I’m sorry this post is so miserable.  I sometimes feel that I made a rod for my own back in being so god damned positive all the time!!! I feel I am letting people down when I feel sad.  But in a way, it helps.  I’m reading back all that advise that I give to others and remembering that I need to take it myself.

And so with that, I am going to try and treat myself a little better, sit in the sun, paint my nails, read a book.  Do the tiny things that I can manage that will ease my mind and warm my soul.

Thanks for reading

 

Sam x

 

What a week!!

So, this week has been crazy!! After my post of the letter to the woman who tutted at me for using the disabled toilets went viral, the website has had over 2 million views and I have been in newspapers, websites, radio stations around the world and even had an appearance on BBC breakfast.

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I have been on BBC Sheffield, BBC WM, BBC 5 live, Spin 1038, Rother FM and Hallam FM.

I made it over to Australia and appeared on both The Telegraph and News.com as well as countless smaller news outlets.

Lots of Danish and Swedish websites ran the story too. Plus too many sites than I can mention have shared, reblogged and discussed the story as well as the Metro and Huffington Post.

I have been in the Sheffield Star, daily Mail and the Mirror.

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But please don’t think I’m bragging. I am just so pleased that my story, my little blog, my baby has made it into the lives of so many people.

From the start, what I wanted was to make a difference. To help those with Crohns and Colitis to not feel alone, to know there are others who feel the same, suffer in a similar way and that there are a community of people who care and want to make their lives better.

To know I’m part of that, that I’ve made people feel a little better is amazing. I am so proud.

Now, pride is a sin, (I remember this from my Catholic youth!) but I don’t care! I am proud that I have turned the worst two years of my life into something amazingly positive, something that has made a difference to people around the world!

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I have received messages from thousands of people telling me their stories. I am honoured that all these people feel they can share the personal details of their illnesses and feelings. I am reading every single comment and email and trying to reply to as many as I can.

I’m in shock to be honest, the past week has sent me from a blogger sat talking about poo in her office to the couch of the UK’s top breakfast show! I am a little overwhelmed by the attention but so blessed that this has happened.

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I just want to thank every one of you. Every single read, like and share is making a difference to millions of people. This issue is bigger than the IBD audience that I had originally planned it for. Messages from people with all manner of invisible disabilities have touch and I have learnt a LOT.

Moving forward from this viral publicity, I am more motivated than ever to make a difference. I am in talks with three different charities about how I can help to better the lives of my peers and I am so excited.

I know I come across as this confident, outspoken person who is fearless… Inside I am a 33 year old mum, I am a wife, sister, daughter, friend. I was a teenage mum and constantly worry and question myself. I have a chronic illness that will never leave me and I’m always exhausted. I worry people will judge me on my lack of further education and think I’m stupid. I’m a size 16 woman living in a world where women are judged my their size not their character.

But I’m also a writer.

I want to make a difference.

I want to change the world.

And so this past week has taken me, and all my flaws and weaknesses, and taken me one step closer to my goals.

Thank you so much. You’ll never know how much I appreciate every read, every like, every share, every comment.

You lot are awesome.

Thank you

✌️& ❤️

Sam xx

More Than Meets The Eye – Campaign for Invisible Disabilities Awareness

After my post on using accessible toilets with an invisible disability went viral with over 2 million views, I knew I had to harness this amazing audience and do something good with it and so after spending the week talking to people with disabilities all over the world and also Disability Charity Scope, I am over the moon to launch More Than Meets The Eye, a campaign for invisible disability awareness.

In the open letter to the woman who judged me for using accessible toilets, I wrote “I know you saw me running in, with my able bodied legs and all. You saw me opening the door with my two working arms. Without any visible sign of disability.  My lack of wheelchair may have suggested to you that I was some lazy cow who didn’t care. You may have seen my face blushing as I caught your eye and assumed I was showing guilt at blagging the disabled loos. You tutted loudly.”

I’ve received THOUSANDS of messages from readers who have faced similar judgement from members of the public because of their own invisible disability. People with cancer, prosthetic limbs, autism, Tourette’s, brain disorders, bladder issues, partners with dementia and so many other issues… All saying the same thing.

That there is more to them than meets the eye. Their disabilities may not be visible at a glance but they are so real and they make their lives difficult at times.  That not every disability requires a wheelchair and that using an accessible toilet or disabled parking space isn’t a luxury or a privilege, it is a necessity for them to lead their lives.

I have learnt so much from the people who have contacted me, I had a chat with amazing charity Scope and they agree that more needs to be done to raise awareness of invisible disabilities…

And so begins this campaign… #MoreThanMeetsTheEye is my way of making a stand for all the people who contacted me and for the millions around the world who live every day with an illness or disability that affects their lives but is unseen by others.

People with an invisible disability don’t want special treatment, but for society to be more aware that they exist, for everyone to think twice before judging someone who looks seemingly able bodies, and to be more compassionate and kinder to their fellow human.  More Than Meets The Eye is a way to bring the discussion of Invisible Disabilities into the lives of everyone.  To share real stories and explain how it is to live with an illness or disability that can’t easily be seen.

No one expects for the public to know about every single disability and illness but rather than immediately judging someone you see using accessible toilets or disabled parking, stop and remember there is a human being on front of you who may have many different issues that they shouldn’t have to explain to you.

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I am sharing with you some messages I have received from readers of So Bad Ass. Please join me in sharing your own stories using #MoreThanMeetsTheEye or perhaps you can take a photograph naming your invisible disability or how you feel?

I will be doing a bit of blogging and writing for Scope in the coming weeks and really hope to raise their profile as they do a fantastic job at supporting people with disabilities as well as educating, raising awareness and working hard for equality.

This is an issue for millions, so many people are sharing their own stories of being judged, but I genuinely don’t think that all the ones doing the judging are nasty or mean people!  I think they believe they are defending the rights of those who they think are entitled to use accessible toilets or disabled parking spaces.  I have had so many telling me that they have been the person tutting but it is because they see someone seemingly able bodied and think they are helping.

The reality is that there are so many reasons why people need extra support and we all need to be more aware that invisible disabilities exist on so many levels and that judgment just makes lives more difficult.

Please take a look through some of the images below and take the time to read real quotes on how it feels to be judged for something that is beyond your control.   The first one is from an email I received from a mum talking about her little girl.

“She was born at 26 weeks and had to have part of her bowel removed.  We use disabled toilets and the disgusting glares and tuts we get are unreal.  I refuse to explain my daughter’s complex health issues with strangers so they usually waltz off believing they’ve put the world to rights.  In actual fact they’ve just made a disable little girl and her family much more anxious about going out.”

Read that and remember it the next time you see someone seemingly able bodied using an accessible toilet and think you are helping by telling them off…

Take a look through these quotes and I hope they will make a difference to the attitudes of society, I would love to see these printed in and around accessible toilet areas! Together we can make people realise that there is #MoreThanMeetsTheEye

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For every person with an illness or disability that can’t be seen immediately, I want a brighter future, a happier future and a kinder and more compassionate future.

Please share and get involved, I am so overwhelmed at the viral attention and think we have got people talking, but we can go further with #MoreThanMeetsTheEye and actually make a difference worldwide!

You can share your own stories of Invisible Disability using #MoreThanMeetsTheEye on Facebook, twitter and instagram or share them with me through my contact page and I will display them on the More Than Meets The Eye Page here on So Bad Ass and on all my social media.

You can find me on twitter @so_bad_ass, Facebook and Instagram.

Let’s make a change and get people talking.

✌️& ❤️

Sam x

 

You can contact Scope on their website or by phone on 0808 800 3333 or email at 

Life with chronic illness – what it's really like

“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?

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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.

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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

Fatigue and Chronic Illness

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

5 ways to keep a relationship strong through chronic illness

All relationships have ups and downs, it can be hard work to keep a strong relationship when times are tough.  I thought I would write about how chronic illness can affect a relationship and ways to get through the shitty times to stay strong together.

I met my husband Timm 15 years ago in a nightclub in Sheffield called The Leadmill , (Im sure EVERYONE in Sheffield met one partner or another there…) we married 10 years ago shortly after I had been diagnosed with Ulcerative Colitis so it is a disease we have learnt about together through the years.  Last year I had a subtotal colectomy and lived with an ileostomy for nine months, then just weeks ago I had pouch surgery to reverse my ileostomy and create a new bowel pouch.

subtotal colectomy end ileostomy surgery ibd ulcerative colitis sheffield sam cleasby

During my ten years of illness I have faced extreme fatigue, bleeding, aching joints, diarrhoea 30 times a day, incontinence, so many different types of medicines and treatments, endless doctor and hospital visits and stays, two surgeries, a compromised immune system that means I pick up every bug going and more days than I can recall that I just couldn’t get out of bed.  During this article I am talking about Ulcerative Colitis but the same goes for anyone living with chronic illness.

1. Be honest with one another

Being chronically ill sucks, it makes you feel alone, and filled with anger, sadness, guilt and hurt.  It is so important to be able to share how you are feeling with your partner and for them to share with you.  It is hard to share those feelings with someone, and even harder to hear them from someone you love, but you need to make time to share honestly and openly.

Without honesty it is easy to start to assume how the other person is feeling.  Right now I am recovering from surgery and I am so exhausted that I spend a lot of time in bed.  I lay here thinking “I bet Timm is feeling pissed off that Im just laid here.  I wonder if he is angry with me? Maybe he thinks I am lazy.” These thoughts tumble round my head and can make me feel shit.  I don’t allow them to though and I spoke to him, explaining my worries.  His answer was that he is a little quiet at the moment because he feels under pressure to be working, looking after the children and caring for me and he was worried he was failing at it all.

Open, honest communication really is the key to any strong relationship.  It may not be easy, but it is vital.

honesty ibd ulcerative colitis crohns

2. Grieve together.

After my surgery I felt a deep, heavy loss.  I mourned the loss of the body I had, the life I had.  My husband mourned the loss of the wife he knew before illness.  We had to face this together so that we could support one another and learn to accept the new body and new life we had.

To move forward together you need to face your joint fears, get through the sadness and feelings of loss together so you can learn a new way to cope.  Your life after diagnosis may be completely different to your life before but it doesn’t mean it has to be worse.

ibd so bad ass sam cleasby sheffield colitis

3. Step into each others shoes.

Life may suck hard for you if you are chronically ill and facing a life that you never planned for, but you need to take a step back and think of things from your partners point of view.  Think about how difficult it is to see the person you love in pain, how it feels to have to take on the lions share of work or household responsibilities, how it could feel lonely or frightening, how you may feel you have to be the strong one all the time.

On the other side partners of those who are ill need to try and look through the eyes of someone who is chronically ill.  Imagine having constant pain and stress, of having continence issues and the whole host of shame and guilt that comes with that, think how it feels to be ill but feel guilty for it, to feel helpless and useless, frightened of both the illness and the affect it has on the people around you.

If you can both do this, then it is an amazing starting point for discussions about love, support and care.

step into my shoes

4.  Stay intimate

Chronic illness means different levels of illness at different times, it is easy to push away your partner, especially when the issue is IBD as having problems with diarrhoea and bleeding don’t really put you in the mood for sex!  But its really important to make sure your relationship with your partner retains some level of intimacy.  A relationship without intimacy is a friendship, which may be fine for some couples but if that isn’t what you want then you need to address the issue.  Its not just about sex, it is about being close, hugging, kissing and showing each other love and care.

Talk openly about what you want and when.  Sometimes I feel that my illness takes away my sexuality, when Im very ill I just don’t feel sexy, I don’t feel desirable or have any interest in sex.  But thats ok when I tell my partner that, when I explain why Im feeling the way I do it is easy for him to understand and respect.  Without talking it is easy for him to feel pushed away and uncared for.

Equally you need to accept that your partner may have fears or issues with being close to you, they may worry about hurting you or making you feel uncomfortable.

The answer is always to talk, talk, talk.

sam and timm cleasby

5. Enjoy the things you have

Ok, things are different, this may not be the life you planned but it is the hand you were dealt so learn how you can make the most of it.  If you are with the person you love then you are lucky, make it work for the two of you! When you are ill then plans of nights out and country walks may be out of the question, but you can replace them with movie nights in or hanging out in the garden.

Show each other that you love one another, there needs to be no grand gestures, this isn’t about diamond rings, it is about saying ‘I love you’, ‘I appreciate you’ ‘You make my life better just by being in it’

enjoy the little things relationships and chronic illness

 

My husband and I have faced the toughest year of our lives, two surgeries, multiple hospital stays, meds, recovery and a lot of tears.  It could have torn us apart, we have been under so much pressure, emotional, financial and physical but it actually has brought us closer together.  We have never been closer in the whole 15 years of our relationship and that has come through us both taking on board these five rules, talking, loving and appreciating one another.

 

Love Sam xxx