7 December 2015


It was asked of me by the wonderful charity Crohn's and Colitis UK to keep a diary during the next seven days to document what it's like to live with/alongside Inflammatory Bowel Disease (IBD). If you've not already done so then be sure to join in with their latest awareness campaign which is taking place between 1st-7th December by sharing your photos and own experiences across social media using the following #7DaysOfIBD hashtag as well as keeping your eyes fixated on the #GetYourBellyOut campaign's Facebook page for a little fun activity.

Why is it important to share ones experiences you may ask? Everyone's journey of tackling IBD will be extremely varied and each will have a different story to tell.  By sharing your stories and tales of hope you instill strength, courage and inspire others who may be tackling similar experiences; this can be extremely comforting for a patient who may feel a little lost and like no one truly understands. 

It's been said that we face many difference stages when attempting to accept, process and deal with a chronic illness such as Crohn's Disease, Microscopic Colitis or Ulcerative Colitis many of which I have documented in my own blog. From the anger, frustration and sadness to the hope, fundraising activities and awareness campaigns that keep us all going. So over the next few days I shall do my best to share my honest thoughts with you all and document my activities whether they be eventful or not! 

Day one of this rather bizarre experiment as although I write the occasional blog post I don't keep a diary so I'm rather curious as to why I've agreed to let you all in on my boring week ahead but we shall give it a go...
Unusually for me I am taking you all shopping with me; okay so it may only be in the virtual sense but still I'd like to welcome you all along for the ride. I'm heading to the shops to find a new frock for an up and coming event hosted by none other than Crohn's and Colitis UK. If you follow my blog you would know by now that I've had a pretty tough time of late tackling my plight with anxiety which has kept me locked away at home for the last two years as I lost all of my confidence with having Ulcerative Colitis and trying to maintain a hectic social/work life. It could be said that I took myself out of the rat race for a while to focus on ME... which is sort of what we are up to today. After having spent so long cooped up indoors it transpires that I own no appropriate adult clothing; jeans and a
 comfy jumper simply won't cut it at this volunteers event that I've crazily signed myself up for. I'd like to set somewhat of a good example and not rock up having the whole room wonder how such a quiet lass has somehow co-founded the most successful global IBD awareness campaign to date! Have I mention that yet?
At present I somewhat struggle with being outside mixing with the public but I'm far too frustrated with missing out on so much of life to be left at home any longer so it's time to put my game face on and head out into the world! 
Two hours in and I've bagged myself what I feel is a cute frock and a petite jacket to keep warm in this wild British weather. I stopped off for pizza but couldn't enjoy my meal for the anxiety was running away with me. I worry about bumping into friends or people that I know for I'd like to avoid disgruntled conversations with those of whom are starting to forget what I look like as it's been so long since they saw me last. How is it I'm well enough to venture out when I've not made time to catch up with those I hold dear to me? Truth be told I simply want to focus on myself, as selfish as that may sound I'm working hard on my own recovery by popping out for a short while without wanting to explain why I'm not yet up to the task of rekindling friendships that have become strained during the last few years. Home time can't come quick enough! Get me out of here. 

Day two and after yesterdays adventure to the shops today's looking like yet another pyjama day. I'm feeling rather exhausted after my trip out but I'm refusing to return to bed; fatigue you shall not win! I'll be honest in saying that often chronic fatigue is one of the biggest hurdles to tackle. I've previously written posts on the topic and about how my 'pyjama day turned into pyjama week' as an insight for those attempting to understand the true battle with this pesky symptom. So instead of a jam packed day its a few hours shlumped infront of the tv with a cuppa to keep me warm. A day filled with social media scouring it is; what's the latest in research, who's inspiring story is going viral today, can I help to reassure anyone within the IBD community so on and so forth. As much as I enjoy my role as an IBD advocate it too is tiring, I'm only too aware that I've not written any blog content for well over a month as I can never find the time or energy to compose a coherent blog post. I don't want to throw just any woffle together I want my content to resonate with people...so as a result it tends to get put off. I shall aim to finish my well overdue blog post hopefully by the end of the day (am I being a little too optimistic?) followed by popping a card in the post to wish a delightful #GetYourBellyOut campaign supporter well as she recovers in hospital after her latest surgery. Ideally I would like to have access to enough means to be able to sponsor each of the wonderful fundraisers who are stepping out of their comfort zones to raise both funds and awareness for IBD as well as have enough energy to write to and support many of our campaign supporters but truth be told many days I simply don't have enough time for ME let alone anything else. I find my day taken up with working on designs for the campaign which is constantly evolving; sorry blog post you shall simply have to wait. With being so busy it's late evening by the time I realize that I've completely forgotten to take my daily morning medication, here's hoping that my health won't suffer as a consequence of my forgetfulness doh. Is it sleep time yet? 

Day three shall mostly be taken up with packing for my trip away. Attending this volunteers event by Crohn's and Colitis UK will comprise of travelling the furthest distance since my troubles with anxiety began. It goes without saying that the nerves about travelling over an hour and a half with having Ulcerative Colitis is rather daunting but I'm determined not to miss out. Whether it takes me two or three hours with all of the service station stops along the way I WILL get there!! I'm only too aware that my enthusiasm may wane the closer I get to setting off but for now I'm enjoying having something to look forward to. I'm keen to meet fellow volunteers who are the heart and soul of the charity, I too am keen to hear everyone's ideas on how we can continue pushing the awareness of Inflammatory Bowel Disease into the public domain. There are many reasons why I campaign so tirelessly for awareness and one of these is to encourage fundraising because lets face it... the sooner that we raise a heap of money and attract some of the greatest minds into the field of IBD research the sooner we will all be able to have a brighter future. Who doesn't want to work towards such an amazing goal right? Two days until take off and I'm feeling pretty okay. 

Four days in and I'm feeling overwhelmed. I do my utmost to support the IBD community but at times it all gets a little too much. Today (as often) I receive messages from those tackling Inflammatory Bowel Disease who tell me that they're struggling. I have absolutely no medical training aside from a one off first aid course over ten years ago but that doesn't count right? I feel helpless and like my support is inadequate for ultimately I am not the correct person to support these individuals with the strains that this cruel destructive illness places upon people. What am I to say to someone who tells me that they're in floods of tears, the support from their care teams is lacking and that they're struggling to cope? The reality is that the correct support systems simply aren't in place for people who are distraught and often in desperate need. Over the last two years since I threw myself into the online world I have dealt with many suicidal patients and had to support many individuals who are a threat to themselves. This leaves me feeling angry; where is the support for these lost souls? Where?! If I wasn't volunteering my spare time to the online IBD community (as thankfully so many others do) who would be there for the countless individuals who rely upon me for support? Something which I don't like to think about but in reality...I too am attempting to deal with and process my own journey with Ulcerative Colitis so I simply can't be there for everyone. I'm now geared up ready to ask for change! Where are the offers of counselling, life coaching or bereavement support teams? Truth be told it simply does not exist. The best we currently have is an information/support phone line run by volunteers at Crohn's and Colitis UK [Click here for more info and contact numbers]

Day five means only one thing; travel day! I'll be honest in saying that I didn't get much sleep last night and today fatigue is kicking my ...! I'm feeling determined not to let it get the better of me but frustrated with how long it takes to resemble something that looks like a 'normal' human being. Why is it that the healthy spend time trying to convince their employers for example that they're sick when those tackling a chronic illness spend so much time and energy trying to 'blend in' by attempting to avoid looking like the sick kid. I find myself checking and rechecking the traffic reports and circling every service station along the route...needless to say the worries of travelling with a dodgy colon (even when in some kind of self diagnosed remission) leaves me running behind schedule. This is good practise for turning up on time tomorrow with a room full of people waiting for me ...and my dodgy colon to pull ourselves together. Here goes nothing! Wish me luck. Yikes!  

Saturday marks the sixth day of my diary shenanigans and I'm sure you'll take great pleasure in knowing that although I survived yesterday's journey I did manage to make a bumbling fool of myself at the hotel check in by being so fatigued and caught off guard that I failed to fully recognize Dan Mclean director of marketing, communications and membership at Crohn's and Colitis UK; great start hey!
Here's hoping that today turns out better however I'm not setting out on a positive note as sods law would have it my Ulcerative Colitis has decided to play up right when I'd like it to make itself scarce. Having IBD is totally a viable excuse as to being late right? 
Aside from the dodgy painful colon trying to slowly kill me off I would say the days been a great success. As always it's a joy and a pleasure to get an insight into the busy behind the scenes world of Crohn's and Colitis UK. It's been interesting hearing about all of the up and coming plans that they're hoping to implement over the next few months as well as meeting many of the wonderful volunteers. Although I'm totally worn out after today's brainstorming session I still manage to find the time to squish in a beverage with a good friend whilst I'm visiting their city before clambering into my bed for the night. 

Day seven and I've woken up feeling like I've been hit by a truck in the middle of the night, my whole body is struggling today so much so I'm even failing to 'do human'. The exhaustion is ridiculous as I'm finding even the basic task which consists of standing up a struggle so today's motto shall be to keep putting one foot in front of the other. It's your final day with me so let's make it a good one, today I plan on visiting the zoo before heading home. I can't say that I'm looking forward to the return journey so for now I'm going to enjoy my time scouting out what wildlife this city has to offer and no I'm not referring to the locals ha!  After a long journey with many service station stops and plenty of cups of tea along the way I manage to make it home. Almost flattened by the cat as I open the door she's now sat firmly on top of my suitcase; I think it's safe to say that neither of us have any intentions of moving any time soon!