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!
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.
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?
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!
