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Tired, emotional, guilty

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 ✌️&❤️

2014 – what a year!

What a year! I started 2014 in Sydney with my sister and our families, we travelled up the coast and had an epic road trip.  It has also brought me a hernia, a house move, surgery to create my jpouch, a couple of weeks in hospital, a new life learning to live without my colon or ileostomy bag and one more hernia!

I have been on the radio a few times, done talks all over the UK, hit my 100K views on So Bad Ass (now up to 160K) and started a writing course.  I also visited my aunty and uncle in Spain and honeymooned in Lanzarote with Timm  I made a new friend who has a stoma… we made friends because we have no colons but stayed friends because we are awesome and he makes me laugh in a rather unladylike fashion and knows, like really knows…  I made new friends without stomas who I now feel like I have known forever and I hung out with so many old friends who made every tough part of my year easier and every lovely part of my year happier.

We bought a hot tub, I got a big tattoo, I met Chuck D and Flavor Flav, went on a nudist beach and my sister came over to the UK to visit with her family.

I renewed my wedding vows to the best husband in the whole world in the BEST WEDDING EVER surrounded by all my absolute favourite people and married by one of my best friends Violet.

2014 has had it’s ups and downs.  The wedding was amazing, it was just the most beautiful and perfect day and to get to marry my perfect bloke for the second time was the best thing ever and my total highlight of the year.

The surgery was tough, 10 days in hospital after a long, difficult surgery and now 7 months later I am still recovering and learning how to deal with my jpouch.  The past 18 months have been the toughest of my life.  Being so ill and having life changing surgeries have been at times almost too much to bear, there were times when I felt so low, so broken and in so much pain that I just didn’t know how I would cope.

I learnt that coping is the only option.  Every day, no matter how hard it is, you have to just keep plodding, just keep swimming, just keep going… Having fantastic people around you helps and I am lucky enough to have some of the best.  My amazing husband, family and friends make it all bearable in those dark moments and I can’t thank them enough.

This year has seen So Bad Ass turn from a small personal blog into something that is read all over the world and (hopefully) helps people.  All I ever wanted from this blog is to make a difference to other people, to use my pain and my journey to help other people with IBD, to use it to raise awareness, raise money for Crohns and Colitis UK and to help people everywhere to have better self esteem, body confidence and to love themselves.

You are all amazing and I thank you from the bottom of my heart for every read, every like, every tweet, every share, every kind word.  You are awesome!

Enjoy and I will see you in 2015!

 

xx

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Thanks again for an amazing year, if you fancy doing something wonderful please go to my Just Giving page and give whatever you can to Crohns and Colitis UK.

 

Have an amazing christmas and a brilliant New Year!

 

See you in 2015

 

Sam xxx

You are So Bad Ass… Timm Cleasby

On my old blog I started a series of interviews with some of the interesting folk of Sheffield, one of them is my favourite bloke of all time, my husband, Timm.

I talk about him a lot on So Bad Ass as he is a huge part of my journey, illness and recovery and so thought it would be nice to share it here.

 

 

With a music career that spanned two decades, Timm has worked for so many bands, there are too many to mention so I’ll just mention a few of the Sheffield bands, Reverend and the Makers, Richard Hawley, Human League and Arctic Monkeys.

In early 2005 Timm started working for Arctic Monkeys, he spent the next 6 years touring the world with them, watching the band grow from a bunch of teenage kids to one of the most popular and influential bands of our generation.

Then after almost 20 years in the business, he decided he would stop.  That he wanted to do something different.

Photograph: Timm Cleasby

We have three kids together and touring 9 months of the year just got too much.  He tells me that one day he was sat in a suite in some exotic location, in the bar downstairs were a group of young, beautiful famous faces partying.  And all he wanted was to be back at home with me and the kids.  So he stopped touring…

He was interviewed by Mixed in Sheffield, about his life and work in the music industry, its a really interesting watch, take a look.

So how do you move on in your work life from touring the world with musicians? Well, we knew it had to be something that he loved.  So he took his years as an amateur photographer and put them into use.  We set up a photography company, The Picture Foundry, and have spent the last few years building it up into an amazing business where we work together every day and Timm is at home and there for his kids every day.

He also runs Responsible Fishing UK with his best friend James Brunt, creating natural art installations and working with children and young people to encourage arts and play.  He keeps his finger in the music pie as the Productions Director for Sheffield festival, Tramlines.

Let’s get to the interview…

Name, age, gender

Timm Cleasby, 40, Bloke

What do you do?

Photographer, Artist, Organiser of festivals

Photograph: Andy Willsher

How has living in Sheffield and Yorkshire affected your life and attitude?

Living in Sheffield has affected my life in so many ways, I moved here when I was 19 and from then on it’s shaped my life, from studying photography at Stradbroke college to getting dragged into the music industry gigging with local bands in the early 90’s. It’s also inspired much of my work and style in photography, I love industrial settings, probably due hanging out in too many dodgy warehouses and industrial ruins. I would have never had the opportunities I have had without being in Sheffield.

It’s affected my attitude in many ways too… coming originally from Barnsley it was a bit of a shock living in Sheffield, the multicultural nature of the city and the many characters and sub cultures that made up Sheffield in the 90’s challenged most of the conceptions I’d had living in Barnsley in such a positive way… and I’m glad it did.

Yorkshire has provided such an amazing place to live, I’ve had many chances to move away (London, Aus, USA) but I’ve always felt at home here, even though I’ve spent most of my life away Sheffield and Yorkshire has always been the place I come home to.

 

How would you describe yourself in 5 words?

Grumpy, Creative, Beardy, Happy, Bloke

 

Tell me something peculiar about yourself.

I have “Dude” tattooed on my left shoulder and the owner of a tattoo shop / bar called White Trash in Berlin, Germany has “Sweet”…. Yep we were drunk.

I’m going to be a 40 year old Grandpa

I like Fish Fingers and Custard

 

 

What are your future aims?

To have an amazing photo studio in a beautiful house that we can use as locations inside and out

To be a great dad / grandpa

To reach old age with my lovely wife but still act like kids

To have my own festival with my Best pal James

 

If there were a zombie apocalypse, what would your survival plan be?

Fight, fight, fight… Gather as many tools, weapons and vehicles as I can and FIGHT.

 

 

What is your favorite thing about Sheffield?

The fact the within 20 minutes I can be in the city or amazing country side or a big shopping mall.

 

Find out more about Timm at The Picture Foundry.  Follow him on twitter, like him on Facebook.

 

 

Love Sam x

A love letter to myself

Dear Sam,

This is a little awkward but here we go, this is a love letter to you because you need to hear this.  Society tells us that it is immodest to love yourself and the marketing people of the world don’t want you to love yourself but after a really shitty year, let’s just go for it.

You have been through so much and I am really proud of you, you battled so hard and I am amazed that you have come through this experience a stronger person.  Though at times you are frightened, angry and distressed, you have taken it all on board and made something amazing from a terrible situation.

I know you feel you have to always have a smile on your face, that you created this public face of positivity that sometimes makes it difficult to admit when you are struggling.  But you have had to learn let yourself be sad, let yourself cry, let yourself be angry.

I love that you love your friends, that you care about them and try to be there, your kindness has been repaid 100 times over during your recovery and you are lucky to have such wonderful mates around you.  I love that you want everyone to be happy but you know that sometimes you need to take some time for yourself.

You have learnt that you need to look after yourself, that your body is the only place you have to live, that means accepting it’s weaknesses and recognising when you need to stop and rest.  You realise how important you are, and that you can’t help others if you are broken yourself.

I love that you have learnt to love your body, that you have accepted your new shape, your scars and your modified self with pride and joy.  It hasn’t been an easy path but your new found happiness has not only benefitted yourself but has become a role model for others.

I love that after a long time of feeling that your career path was lost in the woods, that you have cleared the trees and discovered these strengths that you didn’t know you had.  Your childhood dream of being a writer that you thought was a silly fantasy is coming true through your own hard work and you are carving your own career and making your own opportunities.

I love that you are silly. That you are ok with playing the fool and know that your laughter is far sexier than any pout.  I love that you did a ropy poly across a dance floor just to see the look on all the “beautiful people’s” faces.  I love that as you grow older and relax more, your humour grows without shame.

I love that you are learning that you can’t fix everyone and that sometimes, no matter how hard it feels, you need to cut people from your day to day life who don’t bring you anything positive.  I love that you are learning that you shouldn’t be a doormat and that ‘no’ is a full sentence.

I love your interests in penguins, dinosaurs, collecting found shopping lists, learning about obscure, random things, knitting, reading and whatever else takes your fancy.  I love that you like these things despite others mocking you for them.  You know your interests should make you happy, not anyone else.

I love that you adore your children.  That you accept that being a mother means constant adapting and learning, you know you aren’t a perfect mum but you try your best and know that is enough.  I love that your children haven’t been scarred by your illness but it has taught them to be more empathetic, caring and open.

I love that you have found a man who makes every part of your life better.  Though you have had really tough times over the last 16 years, the past year that would have broke some people has just brought you so much closer together.  You are a lucky woman to have a person in your life who sees through everything and loves your soul.

I love that you are learning that the hard shell you put up for years didn’t just keep out the hurtful words but it kept out some good people and so you have learnt to drop the shield.  Your path hasn’t always been easy and I know you have anger and hurt when you think of your youth but I love that you are learning to deal with that.  You have been rough on yourself but you are learning to be kinder.  I know you didn’t always feel like you had people to guide you towards making healthy decisions, but that has made you the person you are and I forgive you for all the mistakes you have made along the way.

Your decision to take the last difficult year of illness and recovery and make something positive of it is a real achievement.  This love letter is just one way that you are hoping to teach others to love themselves and I hope you continue and make a difference to the lives of other people.  I love that you blog your journey without shame or embarrassment in the hope that it will help others.

So here we come to the end of this awkward letter of self love, all I can finish with are the words of the great Dory.

Just keep swimming…

 

Love Sam xx

Wedding Video

As some regular readers may know, on 6th September 2014 Timm and I renewed our wedding vows after 10 years of marriage.  It was at the end of the toughest year of our lives, almost exactly a year before I had a subtotal colectomy and ileostomy and 4 months before I had another big surgery to create a jpouch.

This year was HARD and there were times that we really considered cancelling the renewal of our vows but we decided we would go with it, we wanted to celebrate together that our marriage was stronger than ever despite the enormous pressures we had faced and we really wanted to celebrate with our family and friends and have a day filled with joy, love and happiness.

We invited Helene from Cuckoo Films to document the day for us.  We wanted an overview of the wedding renewal and something that would show our personalities.  We are blown away with the result.  I cry EVERY time I watch it and just feel so blessed and happy.

Thank you tons to John Ashton of Little Gem for the amazing soundtrack.

 

Enjoy x

 

Carers. Actual superheroes…

People sometimes tell me I must be very strong to deal with the illness, surgery and recovery that I’ve been through over the past ten years.  The truth is that the strongest person in my house is Timm, my husband.  You see, he has dealt with everything I have been through too, but he doesn’t get the support that I do.

Timm is my carer, he looks after me every day both physically, mentally and emotionally.  Part of me HATES this, I despise the fact that my husband has to look after me in this way, I want us to be equal partners and I feel bad that he has to care for me.  But the biggest part of me has just the hugest amount of gratitude and love for the man.

Carers are superheroes in my eyes and a grossly under appreciated resource in this country.  I can’t even imagine how I would have survived the past year without Timm in my life.  Not only did he take on all the responsibilities of the kids, housework and our business, he had to become a nurse, a therapist, an advocate and an all round hero.

 

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Whilst I was recovering from surgery, Timm was brilliant.  As I lay in bed, resting and allowing my body time to heal, he did EVERYTHING.  But now four months down the line, I’m sad to say he is still being my carer and looking after me.  As I have blogged, things are not great at the minute with my jpouch, I am going to the toilet 15+ times a day, getting up through the night several times, I have massive fatigue and mentally I am not in a great place.  And this is where being a carer gets so much harder.  It is not about a brief period of nursing, when you are a carer of someone with a chronic illness, it is a life long relationship.  And that must suck.

I write this today whilst I am sat in bed.  This morning my husband got up with the kids and sorted them for school, he then got ready for work and came up, kissed me and told me to “rest, sleep and feel better”.  Every night I am waking 3-6 times and so I never get into really deep sleep so mornings are terrible.  I am so tired all the time!  I feel drained from pooing 15 times a day, I am fatigued and have this ache deep in my joints.  Yet the worst feeling is guilt.

I feel so guilty that I am not working, we run a photography company The Picture Foundry and currently Timm is doing everything.  I feel guilt and sadness that our ‘partnership’ is very one sided at the moment.  None of this is coming from him. He has never done anything to make me feel like he is fed up with this, he is never anything but supportive and wonderful.  It is all from me, I wrote recently about chronic illness and fatigue and there I talked about a feeling of waking with a desire to take over the world, that I feel I have a million ideas and want to do EVERYTHING, but then my body reminds me that it is broken and feels like a 90 year old!

 

being a carer is hard work

 

I just wanted today’s post to be a little recognition to the people in our lives who look after us.  Being a carer for someone you love is a role thrust upon you not usually one you would choose.  It’s a special thing to have the patience to care for another person, I know that Timm would brush this off, he would make a joke and say that he does what anyone would do.  This is one of his best qualities as a carer, he jokes about it, he takes the piss out of me, it isn’t all serious, he makes me laugh when the last thing I feel like doing is laughing and always makes me remember that my illness doesn’t define me.

If you are a carer then please go take a look at Carers UK, it is a great resource for anyone in a caring role and gives some pretty interesting statistics plus help and advice. There’s a statistic that says that 1 in 8 people in the UK are carers and that saves the state £119 billion.  Take a peek at the forum to speak to other carers.

There are also support services specifically for people with IBD and their friends and family, take a look at Crohns and Colitis UK.

carers in the uk saves the state billions

 

 

I just want to thank Timm once again for being so bloody awesome, he is just the best bloke in the world and makes every single day better for me.  I don’t know how he does it and keeps all the balls up in the air, he is juggling business, family, home and my health and does it all with an amazing sense of humour, a kindness that breaks my heart and constant love and support.

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Love Sam xx

 

 

Nearly doesn't mean anything at all!

Reason 3,459 that my husband is awesome.

Timm – “how was your evening?”

Me – “not great. I nearly crapped myself at the supermarket”

Timm – “Nearly?”

Me – “yeah, I was ok and got to the loo but I’m feeling pretty gutted and upset about it”

Timm – “Nearly doesn’t mean anything at all!! Nearly means you didn’t crap yourself. Hooray! You know you don’t get sent to prison for nearly robbing a bank! Nearly means nothing.”

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I do love that boy an awful lot.

Sam x

#cleasbysinlove

The wedding renewal was last Saturday and was just perfect…

I will do a full blog post when I get my photos and video back but till then all I can say is that it was the best day of my life…

rock n roll wedding

 

You can see a sneak preview of just a few of our photographs by our very talented photographer Mark Tierney from Tierney Photography here.

 

Sam xxx

The wedding dress saga

In September this year, my husband Timm and I are renewing our wedding vows after being married for ten years and together for sixteen years! We married in May 2004 in Las Vegas, we had originally planned a big white wedding at home, but the stress of everyone else trying to dictate our day just got too much and so we eloped and were married by the king…

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It was such a fantastic day, we married at the Viva Las Vegas wedding chapel, I wore a red and white floral dress and in the evening we ate at the Stratosphere in their revolving restaurant . It was pretty much perfect.

We decided to renew our vows a couple of years ago. Partly because we have just changed so much in ten years, partly because we wanted to share it all with our friends and family and partly because we wanted a big party! Then after the past year of illness, surgery and recovery, our wedding renewal has become such a big thing, it’s the thing that’s kept me going through bad times and given me something to look forward to.

The first thing I thought about was my wedding dress. As I didn’t wear one the first time round I was adamant that this time I wanted a ‘proper’ gown. When I looked at dresses I realised that the ones I liked were around £1,000 and I knew I couldn’t spend that much money. After not working for our business for long periods of time whilst recovering I just can’t warrant spending that much money on a dress I’ll wear once. We have three kids and a business to run, it just doesn’t seem right.

Then I saw dresses from China on eBay at a massive reduction. The dress I fell in love with was just £90. Now I always think if something seems too good to be true then it probably is. But asking around a lot of people said they knew people who’d had dresses from China and they were fantastic. So I risked it and sent my measurements along with £90 through PayPal to an eBay seller.

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I received an email saying they’d got my measurements and payment and the my dress would be with me by 26th July. Shortly after, I got an email from eBay saying the item had been removed but if I had paid then I would still receive the dress. I was panicked but they assured me I would still get it.

I then saw that the seller had been removed!!! Again eBay said that the item should still come and nothing could be done till after the date of delivery had passed. So I crossed my fingers and toes and waited…

My dress hasn’t come.

I’m now five weeks away from the wedding and have no dress. I cried a lot yesterday, that may seem daft as I know it’s only a dress but I’d set my hopes on it and had these dreams of walking down the aisle in it. The last year has been so hard, two major surgeries and a body full of scars mean that though I fight hard to remain positive, sometimes my body makes me sad. It looks so war beaten, so battered and forlorn.

I thought in wearing this dress, that for the first time in a long time I would feel really beautiful. I thought people will look at me and see a bride, not a patient. They won’t think about scars and ileostomy bags, no one will be thinking ‘there goes the lady who talks about poop’. I know this is silly. A dress is a dress. But I had pinned all these hopes and dreams onto this dress and now it’s not here.

I wanted something special for Timm. He has been my carer for so long and in the last year he has seen me at rock bottom, he’s watched me as a broken woman, full of scars and wounds. He’s had to wash me and carry me, he has cleaned me when I’ve had accidents and literally supported me on the toilet when I was too weak. I wanted him to see me and for none of that to be in his mind. Does this sound silly? I wanted him to be blown away when he saw me, for me to look nothing like the sad crying woman he had to push in a wheelchair. I wanted to look like a bride.

I now don’t have enough time to get a dress from a bridal shop even if I had the money. I’m limited by budget and time to high street off the peg dresses or second hand. I’m sure I’ll find something but I can’t help but feel really sad. My friends have rallied and today we are off shopping to see what I can find.

I need to remember that this wedding is about how much Timm and I love each other. A dress won’t change that and after all we have been through, this is but a tiny blip. Our wedding will be a fantastic day because we will be there together.

I’ll remember that and repeat it to myself all day.

Love Sam x

*UPDATE*

I opened a resolution case with eBay, after 8 days the seller hadn’t responded so I escalated the case.

I just received an email from eBay saying they have closed the case and I won’t be getting a refund.

WTF? I’m gutted.

This is the confirmation I got from the seller…

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Then I got this from eBay…

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This is the one I got today, no explanation!!!

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If anyone can help or advise I’d be very grateful 😥

Do we all need an IBDFF?

I ‘speak’ to lots and lots of people online about colitis, crohns, ileostomies, j pouches and alllllll that comes with IBD. I think it’s really important to have the opportunity to talk to other people who have similar experiences to you. There’s nothing worse than feeling totally alone and that no one understands what you are going through.

I’m so lucky, my husband Timm is so understanding, he takes time to listen, he supports me 100%, he loves me unconditionally and makes me feel that my illness has no negative impact on our relationship. I couldn’t ask for a better partner… But he just cannot understand what it’s like exactly.

Last year a friend told me about one of her friends who had IBD and surgeries and said if I wanted to she would hook us up. It was a bit of a hectic time and though I was interested, it just didn’t come off. I emailed him but think I got the address wrong and the moment passed with me focussing on recovering from surgery.

Then this year through the mighty power of twitter we finally managed to start chatting. And I realised that having a personal friend who “knows” makes a massive difference.  We’ve not met in person, but chat privately online quite a bit. He knows what it’s like because he’s been there. We can laugh and make totally inappropriate jokes about arses without the fear of making someone feel uncomfortable. I think he may be my IBDFF…

BFF

 

In the interests of privacy, we decided on aliases, and so he is the CrapBag to my Princess Consuella Banana Hammock… It works on many levels as he has an ileostomy bag and I have a pouch, plus we are Friends geeks and it made me laugh.

I think talking and support is key to getting through living with chronic illness, honesty with your nearest and dearest is a biggie. I’m so bloody lucky to have Timm, I can’t even describe how much easier he makes my life, he fills it with love and joy and makes me so happy (blerkkk… soppy alert) and he’s the one person who makes everything ok.

So I think it’s good for me to have another person to talk to, to share the load and not always be putting my thoughts onto Timm’s shoulders. I’d like to think I help CrapBag out too.

I think it helps that we have a similar sense of humour, things in common apart from the bad asses and a mutual friend so it doesn’t feel too weird.

What do you think? Do you have an IBDFF? Who is your support system?

Would some sort of buddy system help you get through the rubbish times and give you someone to share the good times with?

Let me know about your #IBDFF

Sam x