Remembering the days when I wasn't living, I was only surviving, isn't great... but I believe life has only just begun.
Tom, 28
Diagnosed with Crohn's Disease in 2011
Day 1
One of those days where I am my own worse enemy. I sleep in until the very last minute which means I can't risk eating any breakfast before leaving the house for fear it may cause me to need to the toilet, something that's not an option with an hours commute ahead of me. The decision to sleep in - which always seems a little one at the time - really impacts on my day due to the increased toilet visits the lack of porridge in the morning causes. It's my own fault, whenever I wake up fatigued due to Crohn's I convince myself it's just more sleep I need when in fact it's lots of hydration and a good breakfast. I'd say I'd remember this tomorrow but I know the big con will start again in the morning where I believe again that another 5 minutes in bed won't hurt...
Day 2
My Crohn's gets me up at 4am, not due to pain or a toilet visit but because it makes me want to make the most of my better health and today that means getting to a Project Awesome running workout for 6.30am in central London. I get up so early because I need the extra time to get my Crohn's ready for the day, ready for the commute and ready to run. Despite running two marathons recently I've been going through a bad patch health wise with internal bleeding. Something I'm reminded of the second time round the circuit when running feels like I'm at altitude in desperate need of oxygen causing me have to catch my breath almost after each time round. I'm still glad I went though as you cannot beat the positivity exercise gives you mentally and physically, even if the first alarm is hard to respond positively too!
Day 3
Today I woke up with a big cloud over me, not metaphorically though, it was literally a big cloud! You see last night I went camping with some friends on a hill top, a thing my negativity once told me that I couldn't do. Sure the lack of a toilet is off putting and a barrier physically and mentally at times. Sometimes I can last till we're back in civilisation, other times like this morning, I can't! However if I can squat my way up Kilimanjaro, one time in the bushes isn't so hard. After all just because I have Crohn's Disease doesn't make me an alien, all campers need to go like a bear sometimes. It doesn't mean I can't still enjoy going to sleep out under the stars and wish upon one every now and again whenever my health allows it.
Day 4
A rather unremarkable day at work today. Although that's not really true as every day in my new job is rather remarkable as it's the first job I'd applied for with Crohn's Disease. Something I was incredibly worried about doing, not through bad past experience as I'd had none but just because of the anticipated stigma. Ironically though in the end my Crohn's Disease actually helped me get the job, what with my blogging as The Chronic Adventurer and the wide range of volunteering for Crohn's & Colitis UK that I've done actually made me the ideal candidate for a communications role in the volunteering team of a charity! Sharing my story with colleagues has also meant that 4 of them have come up to me to say a relative or best friend also has IBD. Making my initial worries of sharing my story seem even more stupid.
Day 5
I've lived days like today numerous times since being diagnosed with Crohn's Disease, it's a day I never regret living and always leaves me wanting to do it again soon. Today I volunteered for Crohn's & Colitis UK. I love doing it so much because it makes me make life long friends, people who just get it and I like to think I can make a difference to other peoples lives. Sometimes that can simply be sign posting them to information and support or giving them someone who properly listens to them and someone who understands. Other times I volunteer by fundraising to find a cure and fund the support and campaigning which is also desperately needed. Most of all though I volunteer to make the world and future less scary and more hopeful for fellow IBD patients and myself.
Day 6
After a crazy October of running, I've allowed myself a few rest days this month to mentally and physically recover from always being on the go. Attempting so many back-to-back adventures does takes its toll after a while, especially when I had a flare up of bleeding just before doing two marathons in a week. Since then my health has improved, however my body does still scream at me for a day's peace every now and again where all I do is sleep, blog, de-clutter my life and watch sport and movies. Although I know they are needed in the long run I do struggle sometimes to allow myself to have days like this as I feel they can be a waste of my better health, a day when I should be making up for lost time in the past and future.
Day 7
Looking at the calendar at this time of year always feels strange as it was around this time four years ago that I was going through the worse of my yet to be diagnosed symptoms of a Crohn's Disease stricture, something that had to be removed through surgery. Remembering those days when I wasn't living, I was only surviving, isn't great, however I use them as a marker on how far I've come. With this in mind I've been thinking today of how to mark my upcoming Crohniversary, maybe with an epic run or bike ride or just simply eating foods I couldn't eat four years ago. I like to mark the day each year to reclaim some positivity to the date, especially when I remember the sadness and hopelessness I felt back then telling myself my life was over now I had Crohn's Disease when in fact it had only just begun...
