Shared from Svetlana’s Live Fearless Challenge page with permission

I’m taking on the Live Fearless Challenge this September to raise awareness and funds for the almost 180,000 Australians living with Crohn’s disease and ulcerative colitis.

Flares can last anywhere from weeks to months if you’re ‘lucky’, or years like my current flare. I’m still trying to find a treatment that works for me and controls my disease after failing so many drugs including three biologics, which is painful and exhausting, both physically and mentally. Infusions, self injections, dozens of tablets a day, steroids – I’ve been through it all. This year, surgery to remove part of my colon, and having a colostomy bag was a very real possibility. I’ve never been so scared in my life. Some days are better than others, but many are full of pain, tears and mental defeat. Through all of it we have no choice but to go on with our days, silently suffering with our bodies in survival mode 24/7.

Trying to explain to people why you can’t eat is exhausting. Trying to explain to people why you can’t leave the house because you’re bed-ridden for weeks/months at a time is exhausting. Trying to explain why you can’t do certain things is exhausting. Trying to get people to understand that just because you look fine does not mean that you are anywhere near well. Justifying the illness is SO HARD. I lose 10kg at a time when I get really sick, and I don’t have that weight to begin with. Then I have to deal with the insensitive comments about my weight loss on top of everything else, when putting on and maintaining a healthy weight is all I ever dream of. There’s also the side effects ofthese chemo-based treatments, like chronic fatigue, brain fog, severe whole body eczema, severe hair loss, and other adverse side effects when trialing new drugs leave me in an ambulance. For the last 9 and a bit years, I’ve only been in remission from my disease for one of those years. I’ve missed out on so many opportunities and general enjoyment because of this disease taking over my life. 

That’s why I’m getting active (or as active as I can) this September and aiming to complete 150km. Every kilometre is for the thousands of people living with IBD who face this in silence. Where I can’t be active, yoga and mindfulness will be my daily goal.  Consider supporting me as I take on the LFC! Your donation will help fund research, patient support, education and advocacy – because no one should have to manage this disease on their own. Though God is always with me.

Bless everyone who donates – I appreciate it more than words.