19 April 2014

#GetYourBellyOut progress report!

You may very well have noticed that my poor blog has been abandoned of late :( but I assure you it is all for a good cause!! I have not simply 'given up' on blogging - far from it!! My voice within the Crohn's Disease & Ulcerative Colitis community has been louder than ever. In fact I may just be shouting.

So you have already read up about the #GetYourBellyOut awareness campaign that I have been spearheading along with a few IBD friends these last 3-4 weeks! If you missed it, where the heck have you been?! Not to worry you can catch up on all the latest goings on by CLICKING HERE.

*The spacing for this blog post is all a little whack - I have no idea why its being annoying but there you go*

It's been such a busy month (the good kind of busy) not at all stressful (ok apart from one or two days when I wished I could have work faster and achieve more). It's been rather enjoyable to feel like I have my drive back and am beginning to feel a little bit useful again. I mean being cooped up in the house practically 24 hours a day for weeks at a time thanks to this darn Ulcerative Colitis illness can drive you to stay in your pajamas and feel like you're not making much of a contribution to society. Which sucks! Hence why this awareness campaign has given me a bit of a kick up the butt and re-energized me.

Like I said, its been so super duper busy that I've not been able to update you on the wonderful progress that the campaign is making!! We are STILL going strong and the awareness continues to grow - as does our fundraising total!
The whole #GetYourBellyOut team have been hard at work every single day. Please
 remember we are a small team of bloggers and IBD fighters all of whom get no pay but give their time willingly to support the IBD community. Trust me if I were getting paid to run this campaign, for the 80+ hours a week I have put in I would be rolling in money by now. Again - I'm not getting a dime!! I guess I'm getting paid in happiness and smiles *quick, pass the sick bucket!*

There are quite a few clickable links on this blog post which will take you to all kinds of other pages - don't click them until you have read to the bottom of this post because you might get distracted and forget to return here to see our progress. Please bare with me I'm going to throw quite a bit of information your way :P so..let's get started.

What has happened since I updated you last? Errm let me see if I can remember.

Oh, we now have our LATEST campaign video, one where we squished all of your bellies into - though considering we have had more than 400+ belly photos posted to date it was no easy feat to try and put them all in one video. Therefore if your belly photo escaped the video don't worry we most definitely have clocked it and are really really grateful for every single one of you that joined in!!

It has had 700 views in the last 2 days alone!! Which is AMAZING and shows that the awareness for Crohn's Disease and Ulcerative Colitis are slowly filtering through to the outside world!!

The campaign also made it into the latest edition of Companion Magazine for IBD. 
If you fancy reading the article which I know you inquisitive lot would like to, then you can read it by CLICKING HERE (We are on page 16 -17)

Oh, we did a second TWITTER TAKEOVER on the 12th April where we asked people to tweet images that they related to IBD. For example this could have been a photo of your favourite quote or a tattoo you had done in the name of IBD etc. Again it was so so lovely to see everyone joining in as one united community. To know that you are not alone with this HORRID battle of IBD is such a comfort beyond words!!
This was the photo I posted alongside a small snapshot of the other photos which were posted:

We set up a Facebook #GetYourBellyOut support page, where you can post any thoughts, questions or queries you like without feeling embarrassed or judged. We are all facing Crohn's Disease or Ulcerative Colitis in this group so no questions are off limits and chances are someone will have the answer as we have all been though such similar troubles when tackling IBD. So if you fancy joining us all for a chat over on there simply CLICK HERE to be transported to the Facebook support page. You will all totally join us right?? :)

Hmm what else have we been up to?? I believe we have a local newspaper feature in the pipeline.

I will soon be announcing my next big fundraising event to try and boost our #GetYourBellyOut fundraising total :D This one will be a personal challenge this time. Aaarghhh I'm a little nervous but also excited. I know once I announce it to the world that I am then tied into it so.. it's a bit of an anxious time.
TO BE ANNOUNCED **SOON** Aha what am I doing can I back out? haha.
**Update** To see what my solo challenge is CLICK HERE!!!

The whole #GetYourBellyOut team are hard at work planning our next big idea ready for World IBD DAY which is on May 19th. There have been all sorts of ideas all thrown into the mixing pot and hopefully one of these ideas will be a good one. I have no doubt that the whole IBD community will have plenty of fun ideas, activities and events for you all to join in throughout May with the same goal between us all in mind - to raise as much awareness as possible for Crohn's Disease and Ulcerative Colitis. Again these will be announced in due course!!
We are attempting to see how many re-tweets our awareness video can get on Twitter before the 19th of May!! So if you are on twitter you can find the whole team by searching #GetYourBellyOut or you can find me on Twitter I'm @colitisandme Sahara - @Sahara88uk Gem - @wales28 and Lorna - @lornamary_1981

Right that's where I will leave things for now as there is lots going on behind the scenes and everyone is super busy!! Keep tuned into the #GetYourBellyOut team for more big announcements COMING SOON!! :D

The madness continues over in #GetYourBellyOut part 4!! Click Here

7 April 2014

What's it all about??

I've been thinking ... maybe life has our journeys already mapped out for us. I'm sure there will be a split of opinion, some who will agree with my new philosophy and others who will think we are masters of our own destiny that choose which hand life plays us. Well...until 4 month ago I probably wouldn't be sure which side of the fence I sat on. However of late...I'm feeling like life has been falling into place or more to the point I feel as if *I* have been falling into place and beginning to find my new way in the world.

I often boggle my friends with the notion "What is the point of life? what's it all about??". I mean what do you REALLY get out of life? At times its super enjoyable and other times its super duper tough. A roller-coaster whichever way you look at it. Maybe some say it is to find a loved one, settle down and start a family. For me the answer to the "what is the point of life" is much bigger than 'a big family, sweet house and a white picket fence'.
I have always been of the mindset "leave your mark on the world" for if not, what is the point of you being on this planet? Again a big family, sweet house and a white picket fence is not enough for me!
I want MORE out of life!!

For years I bumbled through life not knowing which direction life would take me in. I have always envied those who just KNEW what they want to do - for example with regards to which career they would choose etc. I've never been one of these people who 'just knew'. I have always been of the mindset that I would one day simply fall into the roll that holds my interest, sparks my creativity and makes me happy. I hoped that one day I would JUST KNOW.

Quote by - I have no idea ;)

Who on this planet would have guessed out of all of the failed career paths, pointless qualifications and wrong turns in life that blogging for the IBD community would be the one thing I felt I was just meant to do. It's not a hassle, nor a chore it's simply something I enjoy doing. Okay I totally understand that I can not make a living off writing a blog but the happiness it brings to my soul is worth any paycheck in any dead end job.
"Find a job you love and you will never 'work' again" (meaning if you love something it will never seem like a job because it's more like fun) :D Oh someone just hand me a blank cheque so that I can continue blogging for an eternity!!

4 months prior to composing this blog post I was sat in front of my computer screen browsing an IBD forum on the Crohns and Colitis UK charity's website when I stumbled upon a blog by a lad called Michael. He was writing a blog about his journey with Ulcerative Colitis and for the next few days I followed his posts as he updated the world with how he was getting on. For the first few days all I did was read his posts, nod my head in agreement as I could relate to everything he said then without leaving any comment I would simply turn my computer off and think no more of it.

Then one day I thought "I can't sit back while people suffer and expect a change with the way people see IBD unless I do something about it. I can't let everyone else raise awareness, raise funds for research and for the IBD advocates to do all of the hard work to just reap the reward" (which will hopefully one day be a cure). That's simply not fair and wouldn't sit comfortably with my conscience. Which is where things got fun.....

I began my blog 'Colitis and ME' with no idea in the world what was ahead of me. Though the more I think about it maybe someone of a higher power DID know what would lay ahead of me. Maybe someone had already planned it out for me. (I am not religious so with the greatest of respects and for me to not upset anyone please refrain from any religious comments - just my view and I'm not getting into this discussion) Anyhow ... maybe my place in life is somewhat planned out for me, as yours could be too.

So, what would lay ahead of me? Well...rather more than I was expecting to be frank. When I started my blog my soul intention was just to document my journey with Ulcerative Colitis. Now it feels like my roll has somewhat evolved - into some kind of support system. My blog draws others in and is a form of reassurance to show people that they are not alone, that others too face the same struggles in life.

This past week I have been on my own mission, what started out as a crazy idea is now a passionate drive within me for change. If you follow my blog you will know I have been partly responsible for the #GetYourBellyOut awareness campaign for Crohn's Disease and Ulcerative Colitis. If you missed it then just CLICK HERE to be transported to the write up and all you need to know about the campaign.

The website which I once leaned upon, turned to for support and seeked reassurance from. The one where I discovered my inspiration to begin blogging. The one I drew strength from knowing that people were working hard to change lives for the IBD community. The one my campaign now feature on. YES, I know - MY CAMPAIGN NOW FEATURES ON!! Mind boggling aha.

Instead of reading about those who are out there in the world actively making a difference I have unknowingly/ unintentionally some how been catapulted into this crazy new world and ended up becoming one of these people. The more I do for the IBD community, the more I interact with those who are suffering every day at the hands of such a debilitating illness the more a desire for change deep within me burns (then again it could just be my Ulcerative Colitis playing up aha!).

A change is already happening. Through the above campaign and through all of the other brave, wonderful, inspirational  advocates for IBD - a change for the better is on the horizon. Gone, one day soon will be the secrecy and feelings of shame those with IBD once felt. In its place growing stronger every day is a brave, determined, united front.

We want change and we won't stop until we get it!! We won't stop until we make both Crohn's Disease and Ulcerative Colitis household names. We will not stop until we find a cure!!!

Therefore I leave you with the happiness knowing that A CHANGE IS ON ITS WAY, no matter how big or small - a change and a glimmer of hope. I too leave you with my above thoughts, maybe life does have a plan of action all mapped out for us after all. Maybe leaving your mark on the world is what it's all about .....

1 April 2014

Campaign for change!!

Firstly I have a little bit of grumbling to do as we all know that both keeping emotions in and stress is enough to make a person with Crohn's Disease or Ulcerative Colitis feel rather unwell. I'd like to get a few things off my chest! This is not my usual style of blogging but some things need saying so do bare with me. You are more than welcome to disagree, though do remember the following saying.....

You may be wondering why I haven't updated my blog of late though as you may have heard from my previous post, I have been on a little bit of a campaigning mission. If you missed my last post then simply CLICK HERE to get yourselves up to speed with the latest goings on.

I'd like to share with you all what I have learnt from the last week of the #GetYourBellyOut awareness campaign that's highlighting both Crohn's Disease and Ulcerative Colitis. I'll begin with what's annoyed me and we shall progress onto a lighter note later on in the article.

People are SLOW to help. I can't begin to tell you the STRUGGLE it has been to get anyone to take notice of the rising awareness campaign. I stayed up for hours, worked tirelessly through fatigue, tiredness, a puffy hand from so much tweeting/blogging/typing. I gave up sleep, ran on auto-pilot, skipped meals and accidentally almost took my medication twice due to my mind being else where. You name it - I did it! I pleaded with writers/reporters/bloggers to all take up the story all of whom rather unkindly slammed the door firmly in my face! Unless you write about fashion e.g. the ever changing shape of a bowler hat - no one wants to know.

People hijack a good idea. Due to receiving no support whatsoever I was forced into a position where I had to write the first blog piece myself as I felt the hard work of the strong, brave, inspirational people who took the time and difficult step to post their belly photos online deserved some respect, recognition and to have their stories heard.

However NOW that the campaign has gathered great momentum and achieved wonderful success it seems EVERYONE want's to get involved. There are people across the world chipping in to try and get a piece of the #GetYourBellyOut action. Those who weren't keen on the idea are now clogging up my news-feed - funny huh?
I am of course not talking about the lovely bloggers who have been a part of the campaign from early doors and kindly written up their own posts about the campaign. Huge shout out to you all, there are simply too many of you to mention but I appreciate every single one of you! *mwah*. Though as time progressed it seems those who at the beginning shut the door in my face now pull in readers by featuring the campaign. 

People try to SQUASH an idea that is not theirs. Jee whizz where do I start with this one! If you happen to not agree with a campaign then PLEASE keep your downtrodden opinions to yourself. If someone goes out of their way to try and encourage discussion/ awareness on a topic that you're unfamiliar with then put quite simply; politely decline to comment. Instead of putting your down cast opinions onto other people.

Propaganda goblins. I am going to partly embarrass you because in my eyes there is such thing as ETIQUETTE, unspoken rules which allow one-another to share mutual respect and understanding for each another. If you gatecrash a hashtag campaign in attempt to flog your own products/services you are HIGHLY out of order!- not cool! Build your own foundations instead of benefiting from the hard work of others.

Do your research. This one really disgruntles me! It is holy POINTLESS to write an article on such an important campaign unless you attain the facts first. People have worked HARD, donating their own time and effort into this campaign only for you to give the campaign a write up without giving those hard working people credit - YOU ARE OUT OF ORDER. You are simply gaining readers for the purpose of jumping on the band wagon. Don't just write about something because it is the talk of the town. Again - not cool!

Big organisations/charities are not doing enough. I whole heartily understand that those big charities set up to help/support people with IBD are doing all that they can to raise both funds and awareness. However, from a UK point of view unless you sign up to or know where to look for these national charities it seems that you fall through the cracks. Not once from a personal stance have I seen a tv campaign, fundraiser or poster in any shop window. I have knowledge that they take place though I have never come across any in my 5 years of living with Ulcerative Colitis. Hence why people are splitting through the net and more awareness needs to be raised.

So.... what have we learnt? that people are sometimes rude, cheeky and outspoken!
Though I am happy to report that I have gained so many more positives than all of the negatives listed above.

Since I blogged last the #GetYourBellyOut team has somewhat expanded from Sahara and I, to now include Gem (briefly mentioned in the prior post) and Lorna. The awareness campaign has been such an outstanding success that we simply couldn't keep up with all of the photos posted, kind messages and tweets. I am still trying to sort through the backlog so sorry if I have missed anyone!

We also decided to host a TWITTER TAKEOVER. A feeble attempt to get the hashtag trending for one hour and to get ourselves noticed a little more.

Ok, so my graphics suck - my pc is still broken so bare with me :)

As time grew closer to our takeover attempt which we had been advertising all day there was no way of knowing how many IBD'ers were out there listening to our call. The closer we came to the kick off time the more worried, anxious, nervous and utterly queezy the whole team felt. Had we done enough? Did people know about it? Would anyone join in?

9 pm came around and we all sat in anticipation for the first tweet to roll in; and roll in it did. BINGO! We have one person on board :D ... then came another tweet...another..and more still! There; in front of our very eyes were tweets with the sweetest of saying all about how the campaign had made the participants feel. In rolled things like "I feel STRONG, UNITED, BRAVE, SUPPORTED, NO LONGER ALONE" etc. Fair to say at this stage the whole #GetYourBellyOut team were in floods of tears!!
Relief? that people could actually hear our plea for change? Maybe. Though these tears were due to the fact that we were so PROUD of all of the BRAVE,STRONG and INSPIRATIONAL people who had opened up (some for the very first time) and allowed us into their world. To see how tough life with Crohn's Disease or Ulcerative Colitis can be. Not only opening up to us...but to THE WHOLE WORLD.

The more photo's that came in, the braver those around them felt and in flooded more photographs. Photos from people who had said those before them had inspired them to talk about their journey with IBD. As did the photos that were posted after them. You all did so incredibly well at making a HUGE change. Over the past week I have seen tweets from Canada, USA, Spain, Denmark etc. all saying the sweetest of things.

"Look what campaign they have going on in the UK"
"We should have a campaign like this over here!"

Which makes me feel incredibly proud not only that the UK have taken the bold step in opening the door to change/discussion about Crohn's Disease and Ulcerative Colitis but that other countries are listening. They too want to support the campaign and include their photos too; which will also hopefully bring about change in their countries. For at the end of the day no matter who you are or where in the world you are from, if you are fighting the awful life changing illness of IBD then we are all striving for change and for the same goal TOGETHER - UNITED- AS ONE.

So this past week has also taught me people with IBD are AMAZING, BRAVE, SWEET, UNITED, EMPOWERED and DRIVEN in the battle for change!! A HUGE thank you to anyone who posted a belly photo, donated or helped spread the awareness message.

I'll now leave you with some comments that came in about the #GetYourBellyOut awareness campaign. It has been a long long week and my brain has almost given up working but my heart is filled to bursting with pride. Xx

#GetYourBellyOut is the best initiative I've seen in 30 years as a Crohnie; great job guys!!!! :) Crazy respect for all those involved with the #GetYourBellyOut campaign Well done for the #GetYourBellyOut campaign for IBD fighters everywhere! Brilliant to see colitis and crohns awareness! X Looking at the pictures for the chrons #IBDawareness #GetYourBellyOut campaign, so many brave chrons sufferers out there! Its defo raising awareness and inspiring :) Proud of everyone who participated in #GetYourBellyOut. I hope it showed others the struggles we face! :) Alot of funky bellies flying around. Well done to everyone involved in #GetYourBellyOut. An amazing job! It takes courage to show your scars. Well done everyone. Stay strong. #GetYourBellyOut 

Yes the madness continues... to read EVEN MORE about the campaign then simply CLICK HERE to read the latest campaign progress report.