Shit gets real: Crohns & Colitis Awareness Week Day 1
Being diagnosed with an (as yet) incurable auto immune disease can take you to some of the darkest recesses of your mind. I wouldn't class myself as someone who has struggled with mental health in the past, but my recent diagnosis, subsequent hospital admission and further investigation, after 2 years of struggling with symptoms post Ecoli really takes its toll. I try and look at things with as positive a mindset as I can but there are periods when I am taken to a place I've never been before. It can be quite a dark & lonely place. Since my official diagnosis with Ulcerative Colitis just 5 weeks ago, I have gone through phases of anger and loss that I can only describe as grieving for a life I once I had, and a life I assumed was ahead of me. Last week I found out I have to have a screening for the more intense medication, need to do more stool samples *groan* and go in for an iron infusion. The 'why me' demon who spent a lot of time with me in hospital and still visits from time to time began to rear its head again. At 25 you feel you are invincible, can do whatever you want and assume things will work out as you hoped but illness takes away parts of you, and changes you. For me, dancing had been a part of my life since the age of 3. Dancing was my way of expressing myself, my social and creative outlet. Everyone knew it was my life. Even just saying 'was' there hurts me. I haven't danced since my first proper flare almost a year ago. The abdominal pain and fatigue won on that account. With this, I lost such a key part of myself. The free spirited, energetic, long haired and somewhat reckless girl was taken from me without my consent. In her place, a somewhat broken, slightly more squishy, medicated girl with thinning hair has been left. I'll tell you right now she won't be staying, she's not welcome. She doesn't allow me to be spontaneous, love fully & passionately, or live life with my usual vigour.
Sometimes I feel as though I am a character in the game Whack-A-Mole. Just as I begin to rebuild strength, confidence and raise my head above the parapet, something is there to whack it back down (luckily sans rubber mallet). I was trying to explain this analogy to Steve the other night and he reminded me that the way that game ends is that the mole gets so fast he out smarts and outruns the whacker. And that's what I intend to do. There isn't another option. I have to keep popping my head up and eventually I'll get up there, break through that upper level and regain some form of who I was and revel in the strength of who I have become. Because I can't let this define me. Just because my bowel has for some unknown reason decided to give up on me for the time being, I won't let it define me. My life is destined for greater things than being a patient.
When I was admitted to hospital 5 weeks ago I was placed on 60mg of steroids through an IV. When I left a week later I was placed on tablets and have been reducing these by 5mg each week. In just 2 weeks time I'll hopefully be off the steroids and just on my long term medication. There have been some symptoms rearing their ugly head again over the past few days and it's hard not to overthink and worry (I've become a constant worrier. How dull!) but as people keep telling me, 'you can't meet trouble half way', so I'm sure it will be ok. I have a new job starting in a couple of weeks, and a road trip with my love in our Volkswagen campervan Ernie to embark on. Let's just hope the bowel holds out. Steve has promised me a swish camping toilet though so i'm pretty psyched.
This might all sound a bit self deprecating but I suddenly felt compelled to write yesterday and wanted to be honest. Too often we sugar coat things, try and make them pretty or more appealing but there's little to disguise a bowel disease with! Im not sure why I write. In some ways it is hugely cathartic for me but I also really hope it can can better educate even one person because, as someone wise once said (me 😉), real women poo too.
Crohns & Colitis awareness week begins today so if you can, please wear something purple in support, share this post or tell a colleague. You can also go to the website and make a donation. With more funding and research I really hope we can find a cure for this disease.