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.

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!! 

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!!

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

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