I’m back from another long day in A&E because of this bastard disease, Crohn’s. I’ve previously written here about my diagnosis and first operations (have a gander, it’s thrilling – intensive care and everything). Cutting a very long story short since August 2013 I’ve had 6 operations 5 of which were within 20 months of each other.
I had my most recent operation two weeks ago for an anal fistula (google it, you won’t be disappointed). Over this past weekend a (very painful) lump came up and I’m having fevers and not feeling at all well so my IBD nurse (firmly) suggested I attend A&E. I called Vince (who was by this time well on his way to work) back from the station as I needed him to take me to the hospital and someone needed to look after Little L while I was there. Big L was at school – never fear!
A little while later I was unceremoniously dropped at the doors to A&E and waddled in looking not dissimilar to Jemima Puddleduck.
I won’t bore you with all the medical malarkey because that’s not what I’m writing this for. I’m writing because a friend of mine wrote on my Facebook wall that I’m “incredible” the way I deal with this. I won’t lie, it brought a smile to my face – but it’s not true. I deal with this because I have to. I actually have no choice. Besides I have two children who rely on me. I can tell you now that I sat in A&E and I cried. I’m not sure if there is a place more lonely in the world than a hospital. I’m used to going on my own and I go on my own out of necessity, someone has to work, someone has to look after my children. I don’t want anyone feeling guilty that I have to go alone, it’s just the way it is.
These days I tend to meet challenges head on with a smile through gritted teeth. My neighbour said to me the other day “you’ve been through so much yet you’re always smiling”. What else can you do? I can’t mope about all the time, it’s not in my nature. But sometimes, like today, cracks appear and the smile crumbles like an NHS digestive biscuit.
And you know what else? I’m scared. There, I said it. An (almost) forty year old woman, a mother of two children and I’m fucking scared. I’m scared of the life (or lack of) I’ve given my children. I’m scared of what might happen if there are more complications and (heaven forbid) the worst happens. I’m scared for my relationship. Vince didn’t sign up for all this – I didn’t know I had Crohn’s until the year after Big L was born. It puts a strain on every relationship, even with family and friends. You tend to snap at those you love the most because you can. Friends wonder why you never go out any more. Times like now I need my family and friends the most but I’m too poorly to see them. And, I’ll admit it, I’m the world’s worst at asking for or accepting help. For that I’m truly sorry. By the way my house is a state and my dishwasher is broken- just sayin’.
But you know who the true heros are? The people I find incredible? The babies, the kids, the teens and twentysomethings with Crohn’s. I cannot imagine, in this fickle, body obsessed world that we live in what it must be like? To have a disease that can be so bloody humiliating. I had to dash to the toilet in Sainsbury’s the other day, I nearly didnt make it so when I did It was the loudest, splattiest crap ever. Sorry to the woman two cubicles down who witnessed the sound of my bottom exploding. I can’t help it. It’s pretty certain I had Crohn’s as a teen, I was just diagnosed with IBS instead which was not unusual back then. But I didn’t suffer to the extent some people do. Now it’s taking hold of me but I’m 40, I’ve lived a bit plus I’ve not got much shame. Let’s face it I can add another 4 people to the list of “who has seen my arse” today (I don’t really have a list but I wish I did now).
One of my friends recently suggested it might help if I “accept” having Crohn’s. For me it doesn’t work like that, if I do that it’ll beat me. I can’t accept this invader in my body I need to fight it! I need to kick its fucking arse.
If you are experiencing any of the problems covered in this post (I’m sooo BBC) please visit Crohn’s and Colitis org they are so very helpful. There are also facebook forums that offer loads of support, and we’re all in the same boat.