20 December 2014

BLOGIVERSARY & tales of hope

March 12th 2014 I wrote a blog post in which I said 'We have a long way to go until we reach the end of 2014, let's be able to say that 2014 was the year we all stood together, strong and united and can be able to say...
"2014 was the year we all discussed Crohn's Disease and Ulcerative Colitis"

My golly what a year it has been!! If you'd like to read that previous post you can do so by clicking here.
What a wonderful year for IBD awareness! So with that said here are only a few of the magnificent fundraisers and campaigns that have been launched this year alone in the battle to raise the much needed awareness of Inflammatory Bowel Disease.

February

To find out more about Crewing for Crohn's see> http://www.crewingforcrohns.org.uk

March
To read more about the fantastic United for Colitis charity visit> http://www.unitedforcolitis.co.uk

March

Keep up to date with all the latest campaign information at> www.getyourbellyout.co.uk

June 



I don't believe Bethany has a website but she can be found via Twitter> @BethyTownsend


June

For all the latest on Blake see> http://www.blakebeckford.co.uk

October/November

Get Your Full Course can be found via> http://www.getyourfullcourse.com














Oh one more thing.....

ITS MY ONE YEAR BLOGIVERSARY!!!! Wooohooo!! I lasted a whole year in this blogging game and I have loved every minute of it. Granted I have been a little sidetracked by the #GetYourBellyOut campaign and all the other social media sites I do my best to keep up with but I'm still here; going strong! I wanted to say a heartfelt THANK YOU to everyone who has stopped by my blog, whether this be your first visit here or your 100th; my blog would mean nothing at all without the support of my blog readers. Granted there have been times when I wondered if anyone was even reading my content and days when it's felt like I am talking to myself. All it takes is one little comment or one heartfelt email that lets me know that someone has found comfort from one of my posts to make all the hard work I put into my blog worthwhile. So I hope you will all join me in raising up a cup of decaff tea to me and my humble Colitis and ME blog :D A whole 365 days young! Mm hmm honey Xx


As you can see it's been a phenomenal year of awareness raising. There have of course been many other wonderful and inspiring campaigns launched within the last year alongside some great new IBD advocates all working hard at raising awareness of both Crohn's Disease and Ulcerative Colitis. Though we must pay thanks to those who were there long before us carving out the stepping stones that allowed such campaigns to have the strong backing that they deserve. A huge WELL DONE to ALL who took up a fundraising challenge this year. I know I personally would like to say a huge thank you to all those who have put themselves on the line and to those willing to stand up and have their stories heard as we aim to raise awareness and understanding of both Crohn's Disease and Ulcerative Colitis. THANK YOU to those who lead the way and set the standard of great IBD awareness.



7 December 2014

Fatigue in IBD> Here we go again...

Nope I don't mean in the sense of 'here she goes again with another one of her ranting blog posts' although I'm sure that is rather apt to the topic I am referring to. The 'oh here we go again' argument. Yep...you know the one!

It's the ever exhausting explanation to the rest of the world as to why you're such a lazy bag of bones. YES, my car battery has run flat again because it's been THAT long since I mustered the strength to go out in it last. NO, I haven't dragged my carcass off the sofa to relocate that pile of ironing...the one that is just as happy sitting out in the open getting a bit of fresh air as it would be stuffed away in the wardrobe. YES, I am once again being a really lousy friend because I would rather spend the day in my pajamas YET AGAIN as I simply don't have the energy to paint on a happy face in order to entertain you my lordship. 'oh you're still sick' YES!!! YES I AM.

I'm sure I am not the only one who is under pressure from those who live in the same household, whether that be your partners, parents or room mates. If you're independent and live in the luxury of your own space I suppose you get the nagging from people complaining that you never visit them.
Anyone else fed up of having to justify your actions due to chronic fatigue, your want for a bit of peace and quiet or the pure 'leave me alone-ness'?? Anyone? Hmm?? Anyone else?


'Until now, patients with severe IBD Fatigue have struggled to overcome this debilitating, invisible symptom. We know that three quarters of people experience fatigue during a disease flare-up, but we also know that 40-48% of patients in remission continue to suffer badly with fatigue'. - Professor Christine Norton, of King’s College London Click here to read more.

Crohn's and Colitis UK have a microwebsite all about 'Fatigue in IBD' which you should all totally take a look at by clicking here. They have also devised a 'fatigue rating scale for IBD' so go check that out also if you can muster the strength.

It seems that no amount of 'I'm exhausted' 'I don't feel great today' or any amount of explaining dampens down peoples attempts to drive me around the bend. Maybe people think I enjoy explain myself time and time again? 'Nope, sorry I'm unable to attend' 'Nope, I missed that outing also' 'Yes I am spending the day in my pajamas once again'. 

I've made no secret of my love of pajama days...I even wrote it down for you all in a previous blog post. To read 'pajama day turned into pajama week' then click here. I also wrote about when 'my get up and go, got up and went' which you can read by clicking here.

Whether it be down to the fact that IBD is getting the better of me, I'm not 'applying myself' or I've turned into a complete and utter grump I am tired, run down, fatigued, kapooped, warn out, drained, sleepy, beat, flagging, empty, burnt out, dog-tired, done in, drowsy, spent, whacked, shattered, exhausted...I am exhausted!! 

13 November 2014

Feeling caged...

Those of you who are following my blog will have learnt by now that I am currently suffering with Anxiety. I am pretty new to the disorder and as yet am trying to find my own way of dealing with it. My current strategy - taking it one small step at a time.

After days of being cooped up inside I took it upon myself to venture to the shops.  To those of you who are living without Anxiety, I'm sure you are thinking 'no big deal'. To those of us suffering with Anxiety it seems we make it a big deal. Here is how my afternoon went....

I woke up this morning feeling positive and my usual chirpy self. I decided that today was the day I was going to move my sorry self off the couch and back into the outside world. I got dressed with more gusto that usual and settled any underlying nerves with a nice cup of tea.

The Anxiety is bad enough but mix in the fact I have Ulcerative Colitis and it is the perfect storm.
So I am all ready to set off and this is when my mind starts wondering all by itself. Nothing has yet happened to start the ball rolling, I'm simply getting my coat ready to face the world. My mind is going 'maybe you should hang on a little while... go in another ten minutes time'.
So I have a frank word with my brain and reassure myself that I am being silly and to just leave now. I will be no longer than ten minutes, if I'm not feeling great I can just turn around. This is when my Ulcerative Colitis tummy kicks off, I get a ball of butterflies in my belly and funny phantom niggling pains that were no where in sight when I was previously sitting idol on my couch. Now that I am wanting to face the outside world...my tummy is playing tricks on me...but so is my mind.

The rational side of my brain knows full well how silly I am being and that my thoughts and feelings are exaggerated... but that makes no difference. The longer I prance back and forth in the house going 'I'll just grab my scarf', 'I'd better take extra money with me' the worse I get- these are all stalling tactics. I am fully aware that I am behaving like this and the rational side of my brain finds it exhausting!!

By now I am angry, frustrated, annoyed and in a wobble.  Am I still going? Will I get there before the shops close? Will I put it off for another day?! NO I'm blooming determined to get out of this sodding house.
I drive (with company in tow) trying to distract myself with the job of driving. I am going 8 minutes down the road and I can easily turn around if my Ulcerative Colitis decides to smite me! I worry the whole way there, I'm thinking 'I'm going to need the bathroom or I'm going to get caught short', 'I should have stayed home'.

I get to the first shop, still with everything playing on my mind. I race through the store at super sonic speed, just fast enough that I don't attract funny looks :) By the second shop I am too busy searching for what I came out of the house for that my niggling tummy pains are all but gone. The dread of needing the bathroom without much notice is still sitting at the back of my thoughts, of course it is, it is always there.

Now I am feeling better knowing that I am on the home straight. By this point my biggest worry is needing a cuppa and my deepest fears are long gone. Instead all of those annoying silly thoughts are instantly replaced with 'see it wasn't that bad!' 'You're a plonker' and 'I'd forgotten how much I rather like the outside world'. I jump in the car and arrive home before I know it. Back to safety and the comfort of my pj's.

I'm feeling happy that I got somewhere and proud that I didn't let those niggling worries Anxiety causes get in the way. I came so close to turning the car around and if I hadn't had company present I probably would have legged it! Up until a year ago I had never felt like this, I would simply jump in the car and not have a second thought. Anxiety is draining, frustrating and a damn right pain. Though today it did not win, I did :P

This routine usually happens each time I aim to leave the house, I can't explain how exhausting it is! The rational side of my brain knows I am acting silly but yet turns my legs to jelly anyway! I'm please to announce that the shaking, crying & all out panic that I once mentioned HERE when the Anxiety first started have now vastly calmed down but still I have a long way to go at working on my relationship with this unwanted Anxiety.

So there you have it folkes! Anxiety.... the bit that's usually overlooked by the medical staff! Turns out Anxiety is not uncommon amongst those who have Crohn's Disease or Ulcerative Colitis and when you think about it it's pretty obvious to see that a lot of Anxiety comes along with having Inflammatory Bowel Disease.

Victoria 1 - Ulverative Colitis & Anxiety 0.
TAKE THAT!!

13 October 2014

If not me, then who?

I'd like to get back to basics. Yes these days I find myself a blogger, fundraiser and campaigner...but only a few months ago (like 10) I was where many of you are now. Knowing very little about Crohn's Disease or Ulcerative Colitis. I was the one looking to bloggers, vloggers (video bloggers) & articles for guidance in this turbulent journey with Inflammatory Bowel Disease because lets face it the doctors are pretty useless at explaining things.

What did I know of my illness 10 months ago? Not very much at all by the looks of things!
I knew not of what IBD meant - I'd never heard of the term.
I had very little understanding of Crohn's Disease & how it effects the system.
I had little knowledge of Ulcerative Colitis although I had the illness for over 4 years! I knew only of what my doctors and consultants had told me...which was not very much.
I knew not of when World IBD Day was nor did I know what the purple ribbon represented.
I had no idea of which items were on the dietary 'no' list.
Nor did I have any knowledge of stomas/ostomys. When I first saw them I could barely look at them...for the simple fact I didn't understand them. I now find myself really comfortable asking questions about them.

I was on the other side, looking up to the great IBD bloggers/advocates who were doing their utmost to raise awareness of these life long, life changing illnesses. Which brings me to ask the question, are doctors and IBD charities doing enough to support those diagnosed with Crohn's Disease or Ulcerative Colitis?? Are these people who are able to make such a vast difference really filtering the right kind of information down to those who need it most? I know I went for a long time only knowing half the story.

I find my advocacy not only revolves around championing awareness of Inflammatory Bowel Disease but I spend a vast amount of time pointing people in the right direction. I honestly do not mind guiding a patient to a charity's website or attempting to answer someones questions on the topic of IBD although I get frustrated as to 'why me?'. Why is it that so many are falling through the net and being left to a world of loneliness and isolation. Why it is down to me to help these people find their national charities. Why is it down to me to share the small knowledge I have with others; surly the basics should be covered by doctors/ charities. Why is it that so many are walking around battling daily with an illness they don't even understand themselves. How are we supposed to educate the world on Crohn's Disease and Ulcerative Colitis when those who have the illness are unaware of even the basics?
Quote by Emma Watson from the #HeForShe movement.

It is safe to say that there is a vast crevice between those in the medical/scientific professions who work with IBD each and every day...and those who are struggling the most to live with the illness. Surly the whole system would work better if the world was better at communicating?! Communication is a two way street to which teamwork in needed. I believe that times are changing in the sense that those battling Crohn's Disease or Ulcerative Colitis are becoming more open and honest about their troubles. Lets hope we can continue building on this and encourage the medical/scientific professions to learn to communicate better with us. I truly believe we have a lot to learn from one another for after all....we are on the same team right??

I am lucky that I found the online IBD community. I am lucky that I am now aware of what support is out there for me. I have been privileged to have spoken with and heard so many of your stories; each story unique in their own right... but I'm disappointed to learn the lack of support that is out there for us all. In the past 10 months my life has changed in so many ways! I began my blog as a way to document my journey with this life-long illness though I now find I'm spending a lot of my time supporting and encouraging you all to speak openly and honestly about your illness, not to worry I too was never this confident/comfortable with my illness 10 months ago. Never would I have dreamed I would be playing such a supportive role and would become a vital link between the medical/scientific profession, IBD charities and those living with IBD on a daily basis!

So again I ask the question;
Are doctors and IBD charities doing enough to support those diagnosed with Crohn's Disease or Ulcerative Colitis?? Are these people who are able to make such a vast difference really filtering the right kind of information down to those who need it most?
Let me know your thoughts in the comments box below Xx

18 September 2014

From the inside out - book review

This is a first for me! My blog has never been the sort for book or product reviews but here is a book I just HAD to tell you about. THE book that's causing a buzz within the IBD community>
They say 'don't judge a book by its cover'...well this time it's totally fine to do so, for the content matches the outstanding cover artwork done by the talented Hannah Walker.

What is it? What's it about?!
'From the inside out' was compiled by the brilliant Matthew Williamson (an IBD'er himself) who gathered up a handful of IBD'ers and pilfered their stories all revolving around IBD, their journeys and the #GetYourBellyOut campaign (I joke he asked sweetly). Within you will find a plethora of blogs, stories and poems all whopped together to create something truly unique.

I won't tell a lie, I was super keen to get my hands on a copy of said book...mainly because my story features within it mwahaha. On a serious note I was super looking forward to hearing IBD 'from the inside out'. It is rather rare to come across those who fight a daily battle with either Crohn's Disease or Ulcerative Colitis that are willing to throw open the doors and tell you an honest account of their journey with IBD. Thank's to the #GetYourBellyOut campaign people have in recent months become more comfortable with sharing their stories which has been a joy to see. Whereas others battling the same illness find comfort in knowing they are not alone in these battles so what better way than to feature these stories within one book.

Not one who likes reading? Not to worry, the paperback book arrived with large print so no need to don those spectacles. If you are a grammar nazi...nope not the book for you as this book contains its raw charm with the odd blooper thrown in for good measure. Not good with numbers? That's totally fine...for the page numbers have magically vanished and accidentally been left out of the book! Do take caution as there are a few F' words thrown in there but again...totally in-keeping with the cheeky monkeys who reside around the campaign, never backwards in coming forwards as they say. Ha - whoops! Though it all just add's to the books charm. I don't think it will go down as one of the all time greats BUT I don't feel that's what the book intended to be! The book is a raw account of peoples honesty...bloopers and all :) The #GetYourBellyOut campaign have always done things a little whacky and out of the ordinary so this book by Matthew reflects the campaign well. Full of character, charm and a few chuckles thrown in for good measure.

What better way to spend the afternoon than lazing about with a nice cup of tea and the chance to lose yourself in other peoples realities. As it turns out the book already has an army of supporters, none more so than my darling Fergie who has been glued to it since it arrived!


Could this book become one of the best sellers? You never know! From the buzz surrounding it and the supportive IBD community sales are going incredibly well. Matthew has kindly decided that 50% of all royalties from the book sales will be donated towards the #GetYourBellyOut campaigns fundraising total. Every penny raised by the campaign will be in aid of the national 'Crohn's and Colitis UK' charity who support those tackling a daily battle with Inflammatory Bowel Disease.

How can I get my hands on a copy of this sensation I hear you ask...
If from the UK you may purchase your copy through Amazon.co.uk (available on Kindle & paper back)> Click here!
If from elsewhere on the globe you may purchase your copy through Amazon.com (available on Kindle & paper back)> Click here!

Once your copy arrives be sure to snap a selfie and upload it to your various social media accounts in a bid to continue the crusade of raising awareness of both Crohn's Disease and Ulcerative Colitis right across the globe! While you're at it do show the #GetYourBellyOut campaign some love Xx

3 September 2014

Tide of emotions

It will come as no surprise when I say that the tide of emotions that come hand in hand with a chronic illness can be compared to no other.

How is it I feel so utterly helpless and vulnerable whilst at the same time feeling strong, united and empowered. It's a really bizarre mixture of emotions. Throughout my battle with Ulcerative Colitis I have felt the highs and the very dark lows. Mainly the highest high was thanks to the steroids they sometimes hand out which means I literally was HIGH on life ahaha (trust me Prednisolone will make the sanest of person CRAZY!!) I will happily admit to being one of these such cases.

Facing your own mortality is a strange place to be and I am not embarrassed to openly admit that I have been through this stage. I'm probably more comfortable talking about this stage of the battle with a crohnic illness as it's a stage I have been through (more than once) but thankfully this is not where I am currently at. So I'm going to talk about it because if your a loved one of someone who has Crohn's Disease or Ulcerative Colitis then you should totally know all of the facts, sides and effects it has on a person.

There have been times when I thought I was dieing and in fairness I think I was well on that road. My health was so poor that my body was not far from shutting itself down. I'm now in a much better place so please nobody worry for me - I'm fine, I'm actually doing pretty well. Anyhow back to the topic. It is said that many face mental health challenges/battles because of IBD and I can whole heartedly understand/see how this can be. I thankfully have not had depression though I have had extreme lows - thoughts to myself like 'it would be so much easier if I wasn't here' 'there is no happiness for me while I have Ulcerative Colitis' etc. I was at a point where I was so downtrodden and sad/unhappy that all I was thinking about was my own mortality. I'm sure many of us have been through the 'Why me?!' 'This isn't fair' 'I just want a break from feeling unwell'. Truth be told...it's super hard to live with an illness day in - day out with no rest-bite in-between for the duration of your life! I speak with many who are struggling, many are in the same exact position I was in...some worse...but know that you will be okay! You may never be great...but you will be okay!!
It's at moments like that, when you are at your lowest that you find it hard to grasp onto a reason to smile. For me - my cat playing was enough of a reason for me to snap out of my horrid mood. To see nature at its best, with no cares in the world is a joy and a blessing to watch. Sometimes in life you have to get back to basics. Stop running around and being caught up in the madness of life and illness and just sit and watch as life continues on around you. Sit for a while watching the birds interact and see that life's not so bad after all.

I feel it's important to be as honest as possible about every aspect of Inflammatory Bowel Disease as its most definitely not all roses and sunshine! Unfortunately mortality and death is something that needs to be discussed. I hear time and time again of people who are completely unaware that people can and do pass away from complications from both Crohn's Disease or Ulcerative Colitis. The important word in that sentence was 'due to COMPLICATIONS' this means (from my understanding) that you can not directly die from having Inflammatory Bowel Disease but there are a lot of high risks which sadly do and can lead to the loss of life. These could be such things as complications from surgery or toxic megacolon to name only a few.
*Disclaimer, I am not a doc so please double check any of the info I hand out*

Life can be hard at times there is no denying that and I'll be the first to put my hands up and say life has thrown more than a person should have to bare at me. But- I am still here, going strong as are you too :)

What I find fascinating about writing a blog is the way I can document how I'm feeling at particular times in my journey with Ulcerative Colitis. I wrote the above blog post many months ago and in all honesty I'm not sure why I never posted it...maybe I was worried of how people would receive the post or maybe I felt it wasn't finished. Over the past few months, the more involved with the IBD community I find myself the more I hear about beautiful souls who have sadly lost their battles. These have ranged from gorgeous young women to those later on in life, for we can leave at any age. I think for this reason alone we shouldn't shy away from the topic of death and I feel it is super important we make clear how serious both Crohn's Disease and Ulcerative Colitis can be. We also need to make clear that yes these are physical illnesses but we go through emotional hell!
What you don't see is the fatigue, anemia, anxiety, depression to name but a few. There is so much going on behind the 'I'm okay' persona. We don't have much of a choice, we must continue to stand strong and fight. No matter how downtrodden you are or how many times you cry in a day...you WILL find a reason to smile again. I am living proof of this. I am now in a much happier place, my emotions are no longer all over the shop. I find time to giggle and smile. Life is still pretty sh*tty living with this illness but I take it day by day. Not all days are bad, find the good in each day no matter how big or small.

To family and loved ones please know that there is so much going on inside that we often fail to mention. Whether due to not wanting to worry you or not wanting to feel a burden but I feel it's important to give you an honest version of what we go through. There is no manual to having your whole life altered out of the blue, all we can do is try and your understanding helps tenfold! x

19 July 2014

When the 'sick' become 'the forgotten'

At what point do the 'sick' become 'the forgotten'??

This is a question I find myself asking today and so far I've come up with a few difference answers to this seemingly bizarre question. "what is she talking about" ...well let me explain.

What I enjoy most about blogging is having my own little space where I can write down whats on my mind. Sometime's this can be something funny or sometimes these thoughts can be pretty sad. Today I am in a state of bewilderment, a sort of 'not really sure how I feel' kind of day. If you're one of these people who have Crohn's Disease or Ulcerative Colitis and are of the attitude 'IBD is only a small part of me' or 'IBD wont get me down, I'll show who's boss' then great and all credit to you, you give me hope on my unhappy days....however this blog post is probably not for you.
Today's blog post if for the 'forgotten few", yes you! Home on your own not doing much while life is busy passing you by. Well what'dya know....me too :) I too have spent far too much time sitting around on my backside while the world has been busy passing on by without me getting stuck in. In complete honesty, I kind of didn't notice it was happening. I hardly ever know what day of the week it is, never know the time, nor do I count the days....everything is just one big kind of blur.

I find myself having fallen into a bit of an empty pit without even realizing I was in it. Which brings me back to my question 'at what point do the sick become the forgotten?' I'm sure many people who have a chronic illness will have experienced how quiet your mobile phone can get, or how people slowly over time just stop turning up at your front door. Its hard not to feel like I have been forgotten.

No one calls....no one. I know life can be pretty busy for most but unless I pick up the phone...no one calls.
Where do all of my friends think I've gone? Do all of these people think I am sitting on a sun lounger having the time of my life? I don't get it. These people are people I have relied on for the last 10 years, some are my dearest friends....yet still...no one calls. A side to chronic illness that people often forget to mention is that it can be incredibly lonely, day in, day out, just you by yourself trying to tackle this huge mountain ahead of you.

Letting go...I have learnt to let go since becoming unwell. Take my advice when I say you will learn who your true friends are and who are the ones who just take up your time.

All of my family and friends are currently out and about in the big world while I'm sat here taking some 'me' time. Regrouping, dusting myself down and preparing to throw myself head first straight back into the rat race so to speak. 5 years is a long time to have lived a relentless battle every single day with such a life changing illness as Inflammatory Bowel Disease but I'm sure this is also a similar case with other illnesses.

Not only have friends forgotten about me...I find I've somewhat forgotten myself. Over the last few months I have gradually lost interest in ME. I can go for days sitting in my pajamas without giving a care to getting dressed. I've not put a brush through my hair or even looked in a mirror- 'whats the point, I'm not going anywhere anyway' or maybe due to extreme fatigue. Somewhere along the line I feel like I have lost the energetic woman who loved life. Granted, the person I am today and the person I was 5 years ago are worlds apart. Whilst some of my old qualities have vanished over time, these are now replaced with even better ones. It's an everyday process but it's hard not to feel a little lost and confused ...which makes it far too easy to forget YOU. Who are YOU?? Who is that person that you find yourself being today?

I find myself just 'existing' because for now...that's all the strength I have.

10 July 2014

To inspire...


I can not emphasize how relevant this statement is to my life!

Back in December 2013 - some 7 months ago now, I was perusing an online IBD forum when I stumbled upon a post from a wonderful guy named Michael. Michael, as I have mentioned before had posted to an IBD forum telling everyone about how he had started a blog about his journey with Ulcerative Colitis. He was using the blog as a way to document his journey after having his first surgery and adjusting to life with an ostomy. If you fancy reading Michael's blog then scroll back up later and CLICK HERE. When I first clicked onto his blog link never would I have imagined the impact it would have had on my own life and my own journey with the same illness Ulcerative Colitis. As I read his blog posts I could relate to everything he was saying, though our paths with IBD were very different. I would sit in the background eagerly waiting for his next post - which is how my blogging experience began. I was inspired by Michael to create my own blog without giving it much thought as to how things would pan out. As I write this now, know that I am some months into a frustrating battle with Anxiety which has kept me at home far longer than I would ever have liked. So I began my blog as a way to pass the time and give my brain something to focus on.


Now 7 months on, where am I and how have things changed? 

Crikey I'm not making these questions easy for myself am I haha! 7 months on I find myself catapulted into the limelight; my once quiet blog is now a key part within the IBD community in our attempt to raise awareness of Inflammatory Bowel Disease. Today I find myself a blogger, a fundraiser and a campaigner, all of which took me rather by surprise. I have made SOOO many wonderful friends that I am so thankful for. These are people who just 'get it' they understand every emotion I feel in the ongoing battle with my illness. No questions or queries are off limits. They are the shining light on my darkest of days. They are my support and they are my online world! Okay, getting too sloppy...back to the point of this post.


One person can make a difference....and everyone should try!!
When I began my journey to becoming an IBD advocate I had nooooo idea the impact my actions would have on a whole community of extraordinary people. The #GetYourBellyOut awareness campaign is somewhere around 3 months old now and has changed my whole outlook on my illness. When I began blogging I had hit an emotional brick wall, up until then I had done really well dealing with my diagnosis of Ulcerative Colitis. However I was at a really low point where all I could do was cry my eyes out and think things such as 'why me' 'I want my life back' 'I am so trodden down with my illness, give me a break!!' - To be completely honest...I'm not sure what would have become of me had I not had the support I received from the whole IBD community.

I used to be shy and a little timid when it came to discussing my illness - not anymore!!
The #GetYourBellyOut awareness campaign changed my life. As each person uploaded a photo of their belly to all the different social media sites I became empowered, I became brave, I was inspired and today I stand stronger than ever.
Once upon a time I carried around a 'secret' that only those closest to me knew, this has now been replaced by a feeling of freedom, as through the campaign I found the strength I needed. Due to the campaign I let the whole world into my world of living with Inflammatory Bowel Disease. Tricky though it may be at times to discuss, I will not look back!!
I am now open, I am honest and I will discuss Crohn's Disease or Ulcerative Colitis until the cows come home!

Michael changed my world, blogging changed my world and everyone who has thus far joined the #GetYourBellyOut awareness campaign have changed my world!!
We have a really long way to go before we reach our goal of making Crohn's Disease and Ulcerative Colitis household names but I sense we are well on our way!
Therefore I will leave you with my final thought.....



3 July 2014

Buy #GetYourBellyOut merchandise!

#GetYourBellyOut's ever expanding range of merchandise is now available via the campaigns official website www.GetYourBellyOut.org.uk/shop
Choose from wrist bands, car stickers, key rings, badges, cotton bags and pens!

To purchase #GetYourBellyOut clothing please click here


FOR LARGE ORDERS OR ANY QUERIES PLEASE CONTACT LORNA VIA lornahaymes@yahoo.co.uk WHO WILL DISCUSS THE OPTIONS THAT ARE AVAILABLE WITH YOU.

Upload your merchandise photos to Twitter @GetYourBellyOut & Instagram using the #GetYourBellyOut hashtag or upload them to our Facebook page as we love to see them. 

8 June 2014

THE GRAND CHOP - result


Blog diggidy blog blog :) Hello my lovely blog readers!! *waves*  Thank you for sticking around and continuing to support me even though of late I have been super busy running awareness campaigns, fundraising and trying to change/takeover the world. It's no secret that I have been really busy, I've also really enjoyed talking with many of you and having the opportunity to engage with a small handful of my blog readers. I've seen a lot of issues raised which for me mean there are plenty of topics I would like to blog about but it's just a matter of finding the time to put my thoughts down on paper. Where does the time go? Like seriously? It's been over a week since my last post boooo! Anyhow...

A few weeks ago I told you all about
I explained that in celebration of World IBD Day (19th of May) I would be raising both funds and awareness for Crohn's Disease & Ulcerative Colitis by chopping 8 inches of hair off!! If you missed that blog post then simply CLICK HERE to read up on what my challenge was. To recap I was asking for donations which would go to 'Crohn's and Colitis UK' which is the national charity here in the UK for those tackling Inflammatory Bowel Disease. In addition I would be helping out a second charity called the 'Little Princess Trust' who make wigs out of human hair for those who have lost their own hair due to Cancer treatments.

So how did I get on? I hear you all ask.

Considering I had not had my hair cut for the last 15 months or so I was filled with a mixture of emotions. I was excited and nervous...excited/nervous/excited/nervous which in the end drove me a little mad haha I was hopping between both emotions. Excited that I was letting the whole world in on my illness and raising awareness for the 5 million tackling IBD but extremely nervous that I would end up with an awful hair cut! I'll be honest, I have lucked out on the last 26 years and ended up with an awful hair do every time I get my hair cut so I wasn't holding out much hope this time around.

The evening before the big day I was glad to be having a 'trim' as my hair was becoming way too long to manage but I was also in a bit of a sulk as I knew what a big change was ahead of me. I pulled my socks up and settled my nerves with a nice cup of decaff tea mm mm!

So THE BIG DAY waaaaaaa!!

I'm not going to lie the hairdresser was a little in shock when I greeted her at the door with my tape-measure in hand haha It was a great feeling to know that I had a little control over this haircut at least. I wanted 8 inches cutting off or it simply wouldn't count - my donators were all counting on me! As I rambled through the rules of the hair chop the whole time waving the tape-measure around, the lovely Amy (the hairdresser) began to get a sense of how important this cut was going to be. We have all been there - we walk into the hairdressers and ask for 'a trim' and they chop way more off than we want right?! So I felt empowered to say 'LOOK WOMAN THIS IS 8 INCHES - no more' (pah, keep this in mind)

We sat down - in the comfort of my own home (housebound thanks to my Anxiety cause by my IBD - great) and she plated my hair with a bobble at each end. By this point I had waved the tape-measure around so much that Amy was almost a quivering wreck herself. We measured, checked and double checked that we had the right length. Okay so we also checked once more :D

The big moment had arrived at last, there was no going back now!!! With my mother on camera duty to capture all of the action, the chop got underway. Believe me I had already considered changing my mind but with a little encouragement I managed to stay seated and not run for the door. Waaaa! (yes I did actually let out a real squeal) The chop itself felt like it took forever, chop, chop, chop, chop and eventually it was handed to me. Yep - there is was...the most important and expensive haircut of my existence!!

For the next 5 - 10 minutes I sat there very quiet in bewilderment while Amy finished cutting and styling my hair. What had I just done?! "Well you can't stick it back on now!" Jeez thanks mam, really supportive! Haha. Amy was wonderful she kept reassuring me that I was doing something great for others who were not as fortunate as myself. We measured the hair to ensure we had cut the right amount...turns out instead of chopping 8 inches we chopped 9.5 (see what I mean about hairdressers always chopping more? even with me wafting the tape-measure around, her hairdressers instincts took over) but I guess that means more hair for those who need it more than I do.

Once Amy had chopped and changed my hairstyle forever it was time for the grand reveal. Would I like it? Would I hate it? Would I live in a cave for the rest of the year until it grows back?! Hmm well I can't say I LOVE it but I can most definitely live with it. I can't express to you how much of a HUGE change it has been for me. Never ever have I had my hair this short. All my friends have ever known is me with super long hair. So we are most definitely tackling new grounds here. What got me through was the renewed self-worth/self-loving that I have come to find from the whole Get Your Belly Out awareness campaign. What I love most about this awareness campaign for IBD is how everyone inspires each other, to simply deal with what you've got and own it - make it your own. So that is precisely what I am going to do, I shall 'work it' and I am going to own this new haircut!!

I would like to take this opportunity to say a HUGE
if you were one of the marvelous people who donated towards my fundraiser. I can't begin to tell you how much your support means to me! Hopefully every penny we have raised will help in the daily fight which comes hand in hand with having Crohn's Disease or Ulcerative Colitis. I know times are tough and many are in financial hardship due to medication costs/ limitations of holding down a full time job. Therefore every penny that got donated means more to me than you will ever know!! THE GRAND CHOP raised just short of £400 which is wonderful - THANK YOU!!

The hair has already been packaged and sent on its way to change the life of a young person living with the devastating effects Cancer treatment has on the body. Hopefully my hair donation will help to raise a smile once more. The Little Princess Trust seem like such a wonderful organisation who really help those who need a special boost so I take my hat off to them!! If I have inspired you to support this charity then CLICK HERE to find out more about the Little Princess Trust... DON'T CLICK THE LINK YET - I have my haircut video to show you :P

What have I learnt from my first ever BIG fundraiser?! Errrmmm ... I have learnt that people who I considered 'friends' don't care for me as much as I would have hoped they did (so a huge cull of fake friends was made) Which turned out to be enlightening and put a smile on my face "take the trash out honey". I learnt that telling the whole world not only super close friends about having IBD is a freeing experience, I no longer have this 'secret' and I no longer have to hide or make stupid excuses as to why I can't attend events/parties/outings etc - I can finally be honest with people and say 'I simply feel crappy today so I'm going to have to miss this one' Instead of making up stupid excuses like 'I can't come because my goldfish died' (Okay so in reality I've never actually used that excuse but I have had to rely on some pretty stupid ones). I have also learnt that strangers are wonderfully kind and supportive! I learnt that fundraising is FUN (yes despite it all I did manage to enjoy myself) but also HARD work. I have not stopped! Which has been a lovely distraction from my Ulcerative Colitis but I am now well and truly warn out!!

If you think I did a good job and have not yet donated - you still have time to do so!! If in the UK you can donate by texting IBDH99 £3 (or another amount) to 70070 Your donation amount will be added to your mobile phone bill. Alternatively you can visit my donation page to donate from anywhere in the world, which will remain open for I think 3 months and I would LOVE to raise a little more in that time. JustGiving - Sponsor me now!

I shall now leave you with a look at THE GRAND CHOP video of my haircut adventure. Right then...time for the grand reveal!! *drum roll please*
Be sure to let me know what you think of my new locks?! Enjoy Xx




23 May 2014

That AWKWARD silence...

*Note to self* 'Must make more time for blogging! Tut tut to me for I have neglected my poor 'Colitis and ME' blog these past few weeks. Truth be told I usually enjoy blogging most when it is late at night, when most other distractions have gone to bed (you know who you are!) and I am free to unwind and put my thoughts of the day/week down on a piece of paper. Trouble being is that this month I have so much going on at once that I have many blog posts all half written as my mind keeps wandering from one topic to the next. I'm finding it tricky to clear my mind and just put my thoughts down in a clear cut way which usually comes so easily to me. *Another note to self* Chill tha feck out! HA! My apologies not my normal tone. Some bloggers have some sort of schedule while others like to plan their blog articles - me? I just write whatever is on my mind...which is rather a lot and its all one big mountain of confusion hence why I am struggling to blog. So...what is on my mind?


What's on my mind is a blog post that I have been wanting to write for a long while - trouble being I've simply not had a free minute to myself to actually get it all down on paper. So here goes.

A topic I stumble across time and time again is 'what/how do you explain to someone what Crohn's Disease or Ulcerative Colitis is, how much do you tell them and how on earth do you own up to having it yourself'. I know you are hoping that I have the magical answer but truth be told ...there is no one single correct answer. The truth is that IBD is a complex illness which makes explaining it to others rather tricky. So let's give it a little go. 


I am sure we have all been there, the dreaded moment when someone asks 'whats that?' which prompts you to launch straight into a bit of a flap, panic or a pickle and makes you think 'oh crikey how do I explain this one'. Then comes the explanation which you send thinking 'jee whiz I sure hope they take this well' and what you get back is....


*To benefit those who don't understand the significance of the above photo or simply are lacking a sense of humour - the above image is of 'tumbleweed' which is used in Wild West movies to show that nothing is going on but a looooong silence.*

NOTHING!! You get back NOTHING but a really awkward silence.


Which is followed by a 'please say something...anything'.

To which point you are thinking 'oh crap why did I say that' 'time to look for new friends' or 'maybe they are confused'.
When the reality is that 4 hours later the person will reply with a 'oh sorry forgot to text back' 'my phone went flat' or 'sorry I've been hiding under a rock all day with no phone reception' huh likely story! I know what you are all up to - you are all 'Googling' the symptoms HA! Do so at your own peril.

Anyhow - from my point of view you first need to decide who it is you are trying to tell as to determain how much detail you go into. Let's face it - the in-depth chat you have with your best mate is not going to be the same one you have with the traffic warden. So on and so forth, which makes having one set answer impossible.


Let's look at it as a colour coded system which may make it easier for you to determain who falls into which and what it is we should say. (the following is simply a guide and in no way the set rule)


THE RED PEOPLE!!

Okay so who would I say fall into 'the red people' category hmm lets see. Let's keep the RED people for curious passing strangers who happen to bring up your illness in conversation. Someone who overhears you talking and has a question or maybe someone who is talking nonsense and you wish to strangle them (HA again - I am totally kidding no violence please) the people you wish to politely correct. Jeez I even ended up talking to the bloke at the other end of a customer services phone-line the other day so trust me when I say you should have your set answer for THE RED PEOPLE to hand.
Hmm what would I say to the red people??

'I have Ulcerative Colitis which is similar in some ways to Crohn's Disease, both of which are forms of Inflammatory Bowel Disease. This is thought to be due to an imbalance of bacteria in my gut which results in the good bacteria working overtime, attacking the intestines which causes it to become inflamed and ulcerated.'
(Clearly if you have Crohn's Disease you swap the Crohn's and Ulcerative Colitis words around - so that it becomes 'I have Crohn's Disease which is similar in some ways to Ulcerative Colitis')  


I would probably just leave it at that - I mean there is no point reeling off the tons of symptoms to the guy you just met in the street. Chances are he will be perplexed (confused) by the above amount of information alone.


THE ORANGE PEOPLE!!

The type of people who would fall into this category would be workmates/ colleges, curious class mates, good friends, people you have things in common with or have spoken to at least once before and so have some kind of rapore with. Chances are you will stumble across one or two nosey people or people who will prompt the 'what does that mean' question. To which you need to come up with a bit more of an answer/explanation.

Again the above answer that you gave the red people still applys but you would then add on to it. So you would say something along the lines of:


'I have Ulcerative Colitis which is similar in some ways to Crohn's Disease, both of which are types of Inflammatory Bowel Disease. In the average person there is 'good bacteria' fighting off the 'bad bacteria'. When it comes to those with Crohn's Disease or Ulcerative Colitis it is thought that the 'good bacteria' is working overtime and trying to fight off an infection (the bad bacteria) which does not even exist. So instead of attacking the 'bad bacteria' it attacks the lining/wall of the intestines instead. This leads to inflammation, ulcers, cramps, fatigue and pain. As of yet there is no cure for this lifelong illness'


Again those who are simply being polite in wanting to know what the illness is probably are not prepared to hear the full run-down or checklist of symptoms. So I would leave it at that.


THE GREEN PEOPLE!!

Crikey - if you are lucky enough to fall into the green people category you are either a best mate, a close family member, a doctor or someone who has asked too many questions so I feel you are somewhat interested in my illness and therefore I am going to roll out my red carpet speech to you so that you may get a true understanding of my daily battle. Be warned - you use this shpeel at your own risk! There are those who like to know more but when told 'more' then decide they are better off knowing only what they knew before. Well tough luck - if you have prompted an in-depth rant about my daily whooo's and haaa's then you are going to have to listen to the whole blooming lot!

My red carpet speech for those who ask too many questions:



Both Crohn's Disease and Ulcerative Colitis are known as Inflammatory Bowel Diseases (IBD) which cause inflammation and ulcers along the digestive track. 

Ulcerative Colitis and Crohn’s Disease are thought to be due to an imbalance of bacteria in the gut/colon. In the average person there is ‘good bacteria’ fighting off the ‘bad bacteria’. When it comes to those with the illness it means the good bacteria is working over time and trying to fight off an infection (the bad bacteria) which does not even exist. So instead of attacking the bad bacteria, it attacks the lining/wall of the intestines instead. This leads to inflammation and ulcers, cramps, fatigue and pain.

Main symptoms just to get you up to speed are vomiting, Anemia, loss of appetite, weight-loss, more trips to the loo, swollen joints and many more. Not to mention all of the secondary symptoms from medications and problems caused by taking these long term. Alongside these there are things like anxiety, hair loss, depression etc, the list is endless! This results in extensive trial and error to find a medication to soothe the symptoms. Some unfortunate souls end up having to have serious invasive surgery to avoid blockages, ruptures and all sorts of complications.

The reality of these illnesses not having a cure mean that 75% of those diagnosed with Crohn's Disease and 25% of those diagnosed with Ulcerative Colitis will end up having major invasive surgery (sometimes life saving surgery) to have parts of their intestines removed or their whole colon in a bid to ease the inescapable torturous symptoms. There are far too many now living without parts of their intestines or whole colons. People can and already have died from these cruel diseases.
I completely sympathies that telling people about your illness is tricky and at times AWKWARD!! I too have been through the stage of telling my nearest and dearest. I began by letting them in on the general idea of IBD then felt the longer I was diagnosed the more of an explanation they deserved from me as to my now peculiar behaviour. In fact I documented it as one of my first blog posts back in 2013. I was super nervous about telling them all but was rather surprised by their response. If you feel you would benefit from seeing my experience then CLICK HERE to read how things went when I told my friends.

As I said, my friends all took the news really well. I think that is partly down to understanding who can handle what amount of information and who will be mature enough to hear the different aspect of a chronic illness, one as catastrophic/detrimental to a persons life as Crohn's Disease or Ulcerative Colitis.


I am wishing you all super good luck with your discussions, remember that on occasions some may make the odd rude or unkind remark. Chances are these will be due to lack of them understanding your illness not because they wish to outright insult you. Therefore you should be ready to hear 'have you tried this diet' or 'you don't look sick' these are just set responses that you will hear as people don't really know how they are meant to react to such news. Try not to lunge for the persons throat ha ha however tempting that may be! For each person you educate you will spare another IBD'er going through the same thing. Together we will make the world a better place and easier for the next generation to not feel they need to keep IBD to themselves. You have noting to be embarrassed or feel ashamed about. If anyone does give you a hard time - send them to me :P I will take care of them mwahahaha!

Be sure to come back and let me know how it all works out for you! Xx