So, this is a bit of a follow up from yesterdays post, and I will try to keep it concise because nobody can be bothered to read my rambles (including me!) , so here goes…
This blog is called “Living my life with Crohns” – but actually, maybe I don’t write enough about that. I write about my life, and I have crohns, and the trials and tribulations I face. But I don’t think I have ever written about what it is actually like. And that’s probably because I had never properly thought of it before my therapy session yesterday. And also because, well, it IS my life – its just what I know, and what I deal with everyday, and sometimes I forget that maybe everyone else doesn’t too. (I know, I used the word AND way too many times, even to start sentances, which normally I hate, but here it is meant to be dramatic, so bear with me 😉 ). And, also, maybe I don’t sit and think about this side of things too much – which is probably a good thing, because it would be depressing and morbid if I did, but perhaps sometimes it is good to say these things.
It is SCARY living with Crohns. Maybe not day to day – right now I am in remission, and that generally means that it has a minimal impact on my life (touch wood). But it does mean I have to make quick trips to the bathroom – I refuse to put myself in a situation where I don’t know where one is. It doesn’t have to be a big deal, but wherever I go, I like to know there is a loo nearby! Also, I get very tired quite a lot – not necessarily after doing anything, but just being worn out. Sometimes this is just tiredness,sometimes it is fatigue, and they ARE different things. But generally, crohns is okay right now in my daily life, it just means taking a few tablets for me at the moment, and the odd hospital trip, but daily, it doesn’t impact me much more than that at the moment.
Crohns is scary. Because I have been there. I have been bent over double in pain, throwing up, unable to eat, crying out because I literally cant hold in how much it hurts. I have been unable to walk, and to dress myself after my operation, I have lost a huge amount of weight, I have been very sick. And it is terrifying to know that that came from within me, and that it could happen again. And that although I am doing everything I can to prevent it, and stop it, that ultimately I don’t have a say in that. It just might happen.
And that’s probably the second scariest bit, not just the potential pain that I know comes with it. But the fact that it might happen, but it might not. That it might start tomorrow, or in a year, or 5, or 35. I have no bloody clue. It could be fine and one day not be, and I would have no warning or no knowledge or no control over that happening. I wouldn’t be able to stop it. It may be bad or it may not be, but either way I will have no idea when it is about to happen and how bad it is about to be. And that, subconsciously I think, brings a lot of uncertainty to my life. It is scary that I could get a job, settle in and in 2 years be bought back down to nothing, because there is no way I could carry on with a job in the state that I was previously in, no way at all. I don’t think about that very often, but it is a thought that I have had, and realistically need to have, but that is terrifying.
The way I think of it is a little monster in my body, he may be hibernating now, and he may stay that way forever, but probably not. He will probably wake up again, and I have no control over when that is , or how bad it is, or how long it will last. Nothing. No say. This little creature ( I know it isn’t really, but that’s how it feels. A part of me I have no control over) can take over my life with no say so from me, and the fact that is is MY body doing it kinda makes it worse, and so frustrating, and scary.
So, that is what it is like living with crohns. Or at least partly. It isn’t always like that, and it isn’t always so scary, and I don’t often think of it that way. But that’s realistic, and true. And terrifying.
I have now scared myself and need to stop writing before I spiral! Positive thoughts for now, and hope for a long and strong remission.