Saturday, 22 November 2014

Interview with Thaila Skye about #GetYourBellyOut

As one of the founders of #GetYourBellyOut, what has been your involvement in the campaign? What sort of things do you do? 

It was the spamming of my belly pic that brought us all together initially.

Any important decisions are made as a team such as any new fundraising ideas, competitions, merchandise, announcements etc. 
We knew straight away that we would make a great team and have since developed our roles for more specific purposes depending on our strengths.
I work in online marketing, mainly social media, so I spend most of my time managing the Facebook page for GetYourBellyOut, interacting on the group and blogging. I had never blogged before the campaign began, it was just another communication method to help spread the word about the campaign and potentially reach a wider target audience. I have continued to blog as I have received some lovely responses from people telling me that I write really well and have explained exactly how they feel. Anything that makes even just one person feel less isolated is worth doing in my opinion. I also have control of the #GetYourBellyOut Pinterest account although I'm not particularly active because it's not really a relevant platform for our audience and the opportunity for interaction is minimal.
I work for a marketing company and the manager of our sister company (Sharon), very kindly bought our web domain and hosts our site completely free of charge! It just goes to show that it is not always what you know, it's who you know! I wrote the web content and Victoria produced a wonderful belly collage with just a small snippet of the thousands and thousands of bellies that have supported the campaign so far!
Lorna is our merchandise guru. She loves being organised and the busy merchandise workload is the perfect opportunity to make the best of her skills. She also attends any meets that she can in order to represent #GetYourBellyOut and again sell merchandise. 
Gem has control of the #GetYourBellyOut Twitter account and is constantly canvassing IBDers to become members of the Facebook group, as well making sure she regularly interacts with the already existing members of the group. Gem has been an avid fundraiser for Crohn's & Colitis UK for many years and it was her JustGiving text number promotion in one of the Facebook groups that prompted me to set one up in the first place. 
What sort of feedback have you heard from people after they see the belly photos, posters and merchandise?

The response from people has been brilliant. It still makes me very emotional to see people declaring on their own personal social media accounts that they have IBD or an ostomy etc as many of these people have been to embarrassed to share their story before! Every time someone posts their belly photo they always receive such an overwhelming response and show of support, even if to begin with they are only ready to share privately within the group. The bellies shared on the Facebook page are also always commandeered by people who they have never met and sometimes never even spoken to before! People who just want to show their support!
As soon as we began selling merchandise we realised what a success it would be. People snapped up the wristbands and car window stickers and began requesting other merchandise that they would like! 
Our awareness posters have had lots shares and the campaign info poster has been printed and distributed all over the world by our loyal supporters. 
For anyone who has just been diagnosed with IBD, what kind of support is there within the #GetYourBellyOut group? 

#GetYourBellyOut group members range from people who have suffered from a very young age to those diagnosed much in later life. There are members who have been battling for years and members that have just been diagnosed. Some have had surgery and some haven't, some are still in the process of going through tests to see if they have IBD at all and others are just supporters of the campaign, friends or family. With such a diverse range of backgrounds, any newbie to the IBD world will be welcomed with open arms and hopefully given advice on their personal situation by others that have been through the same or very similar. 
The effects of IBD are not just physical and it is often the mental support that people need the group for too. Everybody deals with things in their own way but knowing that you're not alone and that you have somewhere to talk openly with people who understand and won't judge you is of great importance. You can also ask any questions you like without feeling silly because at some point or another, we were all newly diagnosed with no knowledge of IBD. The group has so many members that sometimes the odd post may get missed but the rules which are pinned to the top of the group also include a list of all of the admin who are always on hand should anyone wish to have a question asked on their behalf, ask questions directly or just want to talk or rant. If we cannot personally help, the chances are that we will know someone who can. 
What has been the biggest challenge for you during the campaign?

Firstly, communicating purely via inbox is a challenge in itself especially when you've never met these people in real life. You don't know each other's humour or personality traits. I tend to be sarcastic a lot but if someone doesn't know that and isn't aware of the tone in which a comment was meant then it can easily get misconstrued. 
There have been a few big challenges along the way, for example initially when we first began it was a challenge to get people involved. Some people need to see others taking part before having the confidence to take the leap themselves and locating people via social media takes an enormous amount of time and energy, whether that be searching keywords such as IBD, Crohns, Colitis, Ostomy etc on Twitter or joining IBD Facebook groups and forums and then engaging with like minded people, willing to share their stories, bare their secrets and raise awareness.
At the start, whilst trying to build a following for the campaign it did suck an awful lot of time out of all of us to the point where we barely slept or ate and all ended up completely worn out. Finding the right balance between work, domestic duties, having a social life and running a campaign was one hell of a task!
Add to that the fact that Lorna had just had a resection and ileostomy when she joined the campaign. 
Gem had been suffering with her most recent Crohn's flare since February and I had been in pain for an awful long time with recurrent Pouchitis and what I suspected were strictures so we were all fitting in appointments, scans, camera tests and X-rays whenever needed. 
I am currently three days post op from my reversal to reconnect my jpouch. 
Healing really fast!!

This is the second lot of surgery since the campaign began (resection, jpouch revision and temp ileostomy in July).
Gem is currently in hospital after having a resection due to a bowel perforation just a few short weeks ago, and is having a hard really hard time recovering as her Crohn's is still active and small intestine inflamed. 
BUT, for me personally the BIGGEST challenge has been seeing people that I have come to care very much about being so poorly and not being able to help. It takes a huge amount of strength to wipe away someone else's tears whilst inside you're crying with them and for them.

Has your work on the #GetYourBellyOut campaign changed the way you view your own condition? Have you learnt anything new about IBD?

I did a lot of research into my condition and medications so have always been educated enough to hold my own when speaking to medical specialists and novices, explaining the ins and outs of surgical procedures, side effects, medical terminology and such to create a better understanding for those closest to me. I don't feel that the campaign has changed the way I view my condition but it has changed the way I view me. I had such a horrendous time with my first ileostomy that ever needing one again would have been the end of the line for me. I have been inspired by the #GetYourBellyOut supporters and the faith they show me they have in me eventually gave me faith in me too. As dramatic as it sounds, I think the bellies may well have saved my life. 

What has been the most exciting part about the #GetYourBellyOut campaign so far? 

I still get excited over the small things. Planning Twitter takeovers, or reading a positive mention in a blog or editorial. Each little milestone still has me buzzing with excitement. When the campaign began I never imagined we would end up where we are. The first twitter takeover - people actually joined in! Campaign videos that had me crying all the way through! Starting selling merchandise and people being so excited when they received them and then expanding the range. Starting the group and watching the members grow. Meeting and having the backing of national charity Crohn's & Colitis UK! We were thrilled at making £100 and now we're at over £15,00! 

Reaching over 5,000 fans on the Facebook page! Having the website built, never did I imagine such a thing! Even thinking of new ways to spread awareness that little bit further has me nearly wetting myself with excitement! 
And now, NOW we have the ball! A ball that will mark 1 whole years work and hopefully raise much more cash for charity and form some even stronger bonds between some really great people! 
In three words, how would you describe the #GetYourBellyOut campaign?

Inspirational. United. Family.

Finally, how do you see the #GetYourBellyOut campaign developing in the future? And is there anything coming up for people to look out for? 

We have the Birmingham Birthday Belly Ball (all the B's) coming up in March 2015 but unfortunately that's all I can tell you about for now! Sssshhhh! 
I honestly don't know how far we can take it but I would like to keep going for as long as it is humanly possible. I want to continue uniting like minded people with IBD, who want to help us achieve our mission and who want to support each other, dish out cuddles when necessary and cheer each other up on the dark days that we all have! I want to keep raising money until a cure is found and I want to raise awareness to the point where everyone knows what IBD is in the same way that everyone knows what cancer is. I want to scoop up every fragile little IBDer that is struggling and let them know that they never need to feel like they're fighting their battle alone.

There IS light at the end of the tunnel. That light is #GetYourBellyOut!

Reversal - in pictures

I tried to write a hospital diary last time which didn't go very well as I was far too poorly a lot of the time to write and then couldn't remember everything!

This time my very short stay has been documented in pictures instead

Advanced nutrition plan! 4 between 4 & 8 Tuesday evening and 2 before 6 Wednesday morning. I was up at 5.20am drinking, packing and having a bath.

Set off at 9am.

A long wait at hosp, sat in my gown and stockings...

Far too much time to think! 

Ooopsie, clumsy nurse!

PJs on, cup of tea and of course new belly image! 

No sleep. Too bright!! Too many people pooing and vomiting and snoring and shouting...

Free from drips! Cannulars coming out today and I can eat. I go outside and FaceTime my lovely Gemmy.

Friday morning and I'm free to go. Meds bought, dressings changed and waiting for a lift. 

To my mummies for a little R & R! 

Wednesday, 5 November 2014

An open letter to my fellow IBD sufferers

I may not know you but I've walked the road you're walking. I see the fear in your eyes hiding behind that sparkle. I see the sadness that weighs heavy in your heart because your life hasn't turned out quite the way you wanted. I see the pain you try to cover up with a smile and a joke.

I understand your journey. I've felt your fear. I've endured your pain. 

I've felt weakness and not asked for a hand up. I've felt tired yet not succumbed to sleep. I've felt pain but refused to scream. I've felt sadness but fought the urge to cry. I've felt the need to talk but kept my mouth shut. I've felt anger and locked it all in. I've felt defeated but carried on regardless. 

I know you're scared. 

Do not walk alone for the road is dark and narrow. 

That road you are walking, you are not walking alone. You may not see me but I am there. 

When you need me let me know and I'll show myself and walk with you. The moonlight will break through the trees and that once narrow road will widen. I'll hold the lamp and I'll lead the way xxx

Monday, 3 November 2014

My mother - my friend - my life

I am probably the least sensitive person I know - or at least I was...
I feel like the Grinch screeching 'I'm feeling' and being completely gutted about the whole situation or wiping my watery eyes, 'I'm leaking'.

The Adele song, 'I won't let you close enough to hurt me' may well have been written about me...

But, it's my mum, it's different... So there!

Me and my mum have had a strange relationship in the past. We never got on when I was growing up and I mean really didn't get on, not like the usual teenage / parent relationship. I told a councillor years ago that I thought my mum had never loved me until I was poorly and she nearly lost me. I couldn't believe what that councillor had just 'made' me say! Who thinks that of their own mother? 

It wasn't unjustified. I told my mum about the conversation and repeated what I had said. Her response wasn't what you would expect. She didn't say don't be silly. She didn't say your my daughter I've always loved you. She said.... 'I can't help it, it's not my fault'. So there you are. I earned my mothers love by nearly dying. Clever me! She's honest, I will give her that. Not many people would sit next to a hospital bed and when asked by their daughter 'am I going to die'? Look them straight back in the eye and say 'I don't know'. Now, I don't like being lied too, in fact I despise it, but if there's ever a time and a place to lie, that would be it. 

Anyway, she loves me now. She thinks I'm great. She thinks I'm cute and sweet and funny and smart and beautiful and strong and she is proud! She laughs at the way that men (silly ones) become obsessed with me and the way I handle it. She laughs at the fact that I can't stand still, that I sing and dance all the time. She likes my honesty. She carries a photograph of her 26 year old daughter to show people like new mums to do of their babies. She tells everyone about #GetYourBellyOut even though she has absolutely no comprehension of how the Internet works. She just generally likes me. And I like her. 

She's come to the realisation that no matter who walks in to and out of her life, I will be the one constant. I will be the one that loves her forever, even if I do have to tell her off for being a twat regularly.

We're ok me and her. We never used to touch. We had weird personal space issues. Don't get me wrong there's still certainly no love fest but we can have a slow dance and we kiss when we separate. 

She looks for things that she thinks I will like doing because she wants to spend time with me. She will think of silly things to make at Xmas because she knows it makes me happy. She will happily collect conkers with me, pointing out the ones that are unopened for me to break open! She's a good mum. She took her time but she got there. I was a shit daughter. I took my time but I got there too. Swings and roundabouts. We both fucked up at some time or another. 

The very worst thing about this illness without a shadow of a doubt is seeing what it does to my mum. I don't think there is anything in the world worse than watching your child suffer. I see her trying to tell my story and I see her eyes fill with tears. I see her telling people how hard I've had it but I see the pain inside her. 

Seeing other people hurting because of me is something that I can't deal with which is why I don't accept visitors in the hospital but I do accept my mum. Why? Why, when I know how much it hurts her do I let her see me like that? It's because she's my mum and I need her so I selfishly put her through it. 

My mums not well. She has some of the early symptoms of UC. I have had UC for 7 years now, I was diagnosed at 19. My mums 46. I know she is worried. I'm hoping the doctors will get her looked at pretty quickly because of my history. Her first thoughts on the matter were that she didn't want a camera up her bum. *flings arms open* welcome to my world! 

Let's all keep our fingers crossed for IBS diagnosis! I honestly don't know what I will do if she is diagnosed the same. I'll do everything I can. I'll answer everything I can. I'll support in every possible way I can but I won't be able to fix it.  

Now I'm stumped. 

I don't know what to say. 

I don't know how to finish because I have no conclusion or end to this post. 

Thank you for reading my random Psychoanalytic / venting / what should probably have been kept as a diary entry post...  

Sunday, 2 November 2014

Unwanted house guest

You know the type... 
Turn up unannounced. 
Ruin your plans (even if your plans did only involve laying around in your PJs all day and drifting in and out of consciousness). 
Expect you to cater to their needs.
Outstay their welcome. 
Leave traces of themselves for you to clear up. 

Well that pretty much sums up IBD to me. 

In my case his arrival was completely UNANNOUNCED. He came storming in with not even a hint of a warning with his stinking attitude and the need to screw me over. RUINING MY PLANS of trying to remain attractive for as long as possible in my very new relationship! Of course he has also taken away many nights and days out, festivals and work events too! 

Life suddenly has to change, his dietary requirements, eating and medication routines need CATERING FOR!

When I was told I had Ulcerative Colitis I was also told it was usually easily manageable with medication and most people can continue to lead a normal and happy life with maybe a few changes to diet etc. I was expecting to be miraculously better real soon and back to normal in no time time at all. Fat chance! Consider his welcome well and truly OUTSTAYED! No getting rid of him. In fact the only way to be rid of him was to cut him out entirely. 

Does that mean you can return back to normal? Does it heck! It means you  crap in a bag for a year whilst you decide how important spawning children is. It means you need more surgery and your insides mutilated. It means even when you're lucky enough to poo through your arse again that it happens at least 8 times a day! You have to plan trips around toilet stops. You can still get IBD in your newly formed internal pouch. Even if you don't you can still get the symptoms of a flare in the rest of your body. Bad joints, skin problems, fatigue, other related autoimmune issues, the list goes on.

The only difference is that with an unwanted house guest you can evict them when it gets too much. You don't have the option to throw him out and lock the door.

With IBD, TRACES OF HIM REMAIN part of your life and your body for as long as you live... 

So what do you do about it? Do you shout and scream and get angry at him every day? Do you ignore him and pretend he doesn't exist? Do you cry yourself to sleep every night just wishing he would go away?

Well maybe you do for a while... It won't help but it is part of the journey.   Eventually you learn to co-exist. Maybe not harmoniously because he is still a right royal pain in the ass but you are together forever and acceptance is a massive step towards understanding and coping. 

So what do I suggest? Invite him in for a cuppa. Figure out what he likes and what he doesn't and don't anger him. Don't get stressed because then he will too and he will make sure you pay for it.

Take him by the hand and walk off into the sunset with the understanding that this is now your life and whilst it might not be the happily ever after you were looking for it's the only ever after you've got.