DAY 9 of 5kms every day.
5kms every day for 30 days straight. I am now just over one week into the Live Fearless Challenge for Crohn's and Colitis Australia.
I'd be lying if I said my commitment of 5km a day this past week wasn't a challenge in itself. I started the week with a setback of restricted airways (I have a manifestation of UC throughout my airways) that kept me running each day (but I WAS able to walk), I've had a week of fatigue, one day self doubted whether 5km was do-able, and I ended the weeks walk with a prolapsing stoma (thankfully I was almost at the end.)
Although this weeks' events didn't keep me from tying my shoes and stepping out, each day they were reminders to keep in control of what I could.
We don't wake up each day with the guarantee that we will be better than yesterday, we cannot predict what will happen and how we will feel tomorrow, but today we can take ownership and give our best shot.
There are so many positives about this illness. One of them being that our good days, can be any other persons bad days; we have the ability to blow off minor nuisances that others feel are major traumas and; when we have a good day, we appreciate it and when we have a bad day, we find the good in it.
One of the first things I remember my diagnosing specialist told me, was that 'IBD (Crohn's at the time) lives with you, you don't live with it.' For 15 years, those words have always stuck with me and have been my motivation to take control in this journey.
By Day 9 I have reached 46km/150km for the month and I am thankful that I have been able to do that!
Help fight the stigma and help to raise awareness so that we have the support we need. You can sponsor my movement this month or support me by joining one or more of my walks throughout September.
Big shout out to my supportive cousins Anthony and Natasha who I joined this morning down at Main Beach to smash 6km of the Live Fearless Challenge.
DAY 3 and the airways.
Long story short. Just over 15 years ago I was diagnosed Ulcerative Colitis and 10 years later I developed a pulmonary manifestation of IBD through my airways. Yep, it’s as bizarre as it sounds and my respiratory specialist tells me I’m a rare case to have developed a lung disease showing the same inflammatory indicators as UC. I have since become a trial and error patient.
My lung capacity is limited due to the inflammation and thickening of the airways and just like UC this comes in flares. Over the last 5 years I have consistently been short of breath and have a cough as the airway lobes are filled with mucus. You know that congested winter cough - that’s me 365 days. Other flare symptoms include fevers, sweats and haemoptysis (coughing up blood).
When they removed my very ulcerated and inflamed colon, I was convinced the lung disease would clear, but 12 months later I relapsed and have since had the best of 91% lung capacity - (this isn’t too bad).
I see a respiratory specialist (every 10 weeks max.) where I do spirometry lung functioning tests to measure lung capacity and air flow. The inflammation is managed by taking oral and inhaled steroids (at carefully reduced doses to prevent further deterioration of osteopenia) and I have frequent broncoscopies to clear the fluid from the airways as well as chest x-rays, physio, and flocked swabs to test for respiratory viruses.
The last couple of weeks I’ve been left short of breath more times than not. Today I took a step back from running and walked day 3 of the #livefearless challenge. I DID make 5km and I DID manage to control my breathing technique a little easier than yesterday. It was a little reminder that when I get tired, I need to learn to rest, not to quit. Life is a blessing and I do my best to stay greatly positive about everything I have been through.
You can sponsor my 150km in September and donate to Crohn’s and Colitis Australia. Without a known cause, there is no cure.
A big heartfelt thankyou!
A big heartfelt thankyou to every one of you. I truly am so appreciative of your endless support and for continually being a part of my cheersquard at every milestone in my journey.
I set myself a goal to raise at least $1000 for Crohn's and Colitis Australia, and in less than 24 HOURS your amazing support not only helped me reach that, but exceed it.
With no cure for this deliberating disease, and the exact cause unknown, awareness is the starting point to provide the IBD community much needed support to live active and fulfilling lives. If you are unable to donate, you can still make a difference by sharing this page with your circle.
I'm undertaking the Live Fearless Challenge this September
I'm putting on my sneakers to achieve 150kms and raise awareness and much needed funds for people living in Australia with IBD.
In 2003, my immune system thought it was okay to attack healthy tissues - let me tell you, this is not okay. It never occurred to me that one day I would wake up with symptoms that would change my life forever. Now, 15 years later, 2 major surgeries, one less organ and a temporary ileostomy, I personally understand the challenges living with a chronic illness brings to daily life. The importance of awareness and support make life more liveable for not only patients, but family and friends, as they suffer too.
As I tackle this physical challenge, it will help to know that you have supported me with even a small donation.
All proceeds go towards Crohn's & Colitis Australia who provide research, education and advocacy programs for people living with IBD.
All donations over $2 are tax deductible.
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My IBD Journey
I was first diagnosed with Indeterminate Colitis in 2003, when I was 12 years old.
After what felt like years of trial and error, excruciating stomach aches and cramping that would go on for days and sometimes weeks at a stretch, fatigue, blood loss and anaemia, I had a resection to remove an inch of my lower bowel in 2006. I experienced several flare ups and many side effects to medications like Arthritis, Psoriasis, Osteopenia and developed a manifestation of Ulcerative Colitis in my airways in the years to follow. I also fell proudly into remission for some time.
In late 2015, my body began to attack itself, rejecting all nutrition and any treatment I was given. My body ached from head to toe, I very quickly became malnourished dropping 15kgs in less than 2 wks and my knees would buckle at any time. Within 8 weeks, I severely deteriorated and went into emergency surgery to have my large intestine removed.
With absolutely no desire to undergo this procedure despite my body’s organs failing on me time after time, it became the scariest time of my life. I was beyond confused, but I remained positive and hopeful and survived something that tried to defeat me, but didnt.
None of these experiences occurred by choice and there is no one to blame for these things I went through. When your body is attacking itself and you are fighting for your life, you are living in the moment and the only choice you have is to keep a strong mindset.
The option to have reversal is there for me, meaning that having medical equipment attached to my tummy won’t necessarily be a permanent thing. However, I am taking a moment for now, to love myself, be proud of all the progress I have made and remind myself that everyday is a positive blessing and a second chance at life.
In no way am I grateful for having IBD, but I am grateful for who i have become despite this disease. It hasn’t all been easy, and if I have learnt anything, it's that life isn't about what you lose, it's about what you gain. Having an ileostomy has greatly improved my quality of life and I believe it has given me a purpose to share my journey.
Thank you to my Sponsors
Liana & Marcus
Ryan & Rachel Atkinson
Mum And Dad
Sue And Tbone Nelson
Tony, Natasha, Holly And Harrison
Jenny & Dean Mcivor
Caitlin & Ben Coram
Instyle Solar Qld
Glen Erinne And Charlie