It’s been a busy few weeks… I’m swamped in books with deadline season coming up, leaving me writing more about pirates and Thomas Jefferson (yes that is my degree! I’m not kidding) than my angry body! And I haven’t exactly helped myself with the workload… As a lovely surprise I was asked to write for Girls With Guts and featured on Gut It Out as part of Crohn’s and Colitis awareness week. Two fab little projects that made me see how much I love writing to all of you lot when I get the chance.
But I do have something I have to come clean about.
I try to give everyone a little insight into how much of a fucking pain in the arse this whole thing is (literally) but also using that to show that my colitis doesn’t control me and that I can still live my life. However my lovely readers, I have a slight confession to make. I do try to stay positive as much as humanly possible and not long after I was diagnosed I gave myself two choices:
1. I can wallow in my sorrows, drown myself in sadness and be upset at the fact I’m sick for the rest of my life.
2. I can suck it up, get it into my head that I am going to have Ulcerative Colitis for the rest of my life and fight that bastard with every single ounce of strength I have left.
So after months of wallowing I decided to pick myself up off the floor and get on with my life. But there is only so much positive thinking I can take sometimes. It can be so mentally draining when things are going to shit (pun intended) and everyone is telling me how I ‘’have to be positive’’ or if I think positively then I’ll feel better. I know they’re only trying to help but sometimes telling me to be positive when I’ve gone a million steps backwards, when the drugs don’t seem to be working and when surgery is getting closer by the day, it kinda makes me want to punch someone…
So here it is, my confession…
It isn’t just that I’ve not been telling the full truth to all you guys, it’s that I haven’t been able to tell the truth to myself. When a situation frightens me I tend to bury my head in the sand… Taking an ’out of sight, out of mind’ perspective because I don’t want to face the reality that everything isn’t as good as it should be. Over the last few weeks I’ve fallen down this rabbit hole and I can’t seem to get out. During the day I’m relatively normal (whatever normal is nowadays) and I can just about go to my lectures, study for my degree and socialise with my mates. However behind closed doors things aren’t all that peachy.
I’m still spending a lot more time in the bathroom than I should be, and most of the time when I look down I’m faced with a blood red toilet bowl (little graphic I know but I have to be honest with the reality of this illness). So here goes with the ‘out of sight, out of mind’. Every time I’m faced with that sight I say to myself ‘oh you just had a stressful couple of days’ or ‘you’ve been pushing yourself too hard’ and ok some of that is true, but mostly I’m lying to myself. I know I am but I’m just too scared to face it. I’m too scared to tell the world that things actually aren’t all sunshine and rainbows and that positive thinking is getting me absolutely freaking nowhere! Even though I want to be positive and show you all that I can do so much in spite of the civil war I’m dealing with, I’m still on a low dose of Prednisolone with the addition of Cortiment steroids. I’m also on Salofalk enemas and granules every day, the max dose of Methotrexate once a week and they’ve now increased my Infliximab IV to every 4 weeks. And I’m still not in a good place.
I’m not responding to the meds at the right rate and as my doctor keeps reminding me, with the aggression of the drug therapy I’ve been doing over the last year I should be in remission, but I’m not. Ok things are a hell of a lot better (I hate that word but it’s the best way to describe it) than last year – at least I can walk around now – but things still aren’t where they’re supposed to be, and this scares me.
It scares me that this time next year I could be getting ready for the first of two or three surgeries and god knows how much time spent recovering. All my friends could be graduating, starting work or travelling and there I am about to be sliced open and have a pretty vital organ removed. (I mean it’s vital to most people, I’m not particularly attached to my colon considering how much of a bloody mess it’s made of everything).
However, I do pride myself on staying positive as much as possible because it’s the only way for me to not fall back into the state of wallowing. I will always look for the little glimmers of joy in amongst the pile of utter shit that I have to wade through because when it comes to my inflammatory bowel disease, I want to be stronger than my illness. I want to show my body that it’s picked a fight with the wrong girl! And I am determined to keep that smile plastered across my face but sometimes I have to be real. I have to show you all that it isn’t all positive thoughts, because being positive about it 100% of the time isn’t the reality of living with something like this.
Sometimes you want to scream and cry and just be angry at what you’re going through. Sometimes you want to ask the world ‘why me?’. Sometimes you need someone to agree with how shit it all is. And I’m at that point today. I might not be here tomorrow. Tomorrow I might be in a ‘better’ place and everything I’ve written here might be completely contradicted in another post, but that is what my life is like I guess. It’s a constant battle of good and bad; wrestling with my own body in the hope of getting to a point where my colon doesn’t hate me so much.
So here we are. My confession of how I am at the moment… Not doing so well and not really sure how to go about it! I’ve been at this for over a year now and I’m at the point where I just don’t know what to do. My body is being too stubborn and my meds not being strong enough to calm my ulcerated insides, it’s looking like cutting the bastard out might be my only option. But that’s a big decision and a decision that I’m not sure I’m ready for yet. I think it’s the unknown that puts my head back into the sand.
But while you’re reading this I don’t look for pity or for you to be sad for me. I look for you to see what I go through and to take understanding from it. To take what you’ve read and see what a life with a chronic illness is like.
Because help for a cure and for research into IBD starts with awareness of what so many of us go through on daily basis.