You think you know, but you have no idea.

I am scared.

Alot of the time.

I was sat on my bed earlier on, lying next to my boyfriend, trying to find a moment to just relax and be in the moment. It is so hard to just be in the moment. And this isn’t to do him a disservice, but it is so terribly difficult of late to relax and just be happy. Sure, I smile, I laugh, I even giggle, but I worry. A tremendous amount.

Here is a snippet from the monologue inside my head:

“Right. Work. Work. What if I need the bathroom at work? What if I am gone for what feels like hours? What if I can’t stop my guts from working overtime? What if I make so much noise? What if I hurt myself at work? Work. Home. Home. Home. Blog. Eat some food. What if I need to poop? What if I can’t stop and leave the room? What if I just go and have a nap? What if I nap from afternoon til morning? What if I can’t do my Humira again? What if it doesn’t do anything? Why am I constantly ononon and never offoffoff? Why am I always thinking? What if I’m hospitalised again? What if my blood work isn’t good enough? What happens if it get so bad I need surgery? What if I chicken out? What if I get depressed again? What happens if its all too much for him? What if all I’m doing is trying to test him? I know how that feels, its horrible. Why am I so horrible? Why can’t I just tell him I need him and that I love him and please don’t leave? How needy is that? How clingy and dependent is that? What has happened to me? Who will come and support me? Why can’t I accept my Crohn’s? Why am I always so jealous of the normal, healthy people? Why do I feel sympathy for some people and not others? Why do little things set me off?….”

It goes on and on.

Sounds barmy right? Sounds like nonsense, and in a way, it is. It is what I think most of the time, most days. It is like background noise. It never fades.

On the face of it all, I take everything in my stride. But I know that my inability to switch off is also my inability to actually accept my fate and deal with my Crohns head on. I honestly don’t think it is that serious. That it is all just a mistake and there is nothing actually wrong with me. That those times I spent in hospital happened to someone else, someone who is not me. I can not come to terms with it..

But then, I spend a night glued to my bathroom and all those horrible memories comes flooding back – the pain, the dehydration, the fevers, the night sweats, the tests, the unknown diagnosis, everything that makes my Crohn’s real hits me when I am on that seat. I know I know it is me. I have Crohn’s Disease.

Know what scares me?

That injection, the Humira.

The surgery, that will be coming for me in the years to come. And the more I watch and think and wonder about it, the more I fear it. How can I accept a ‘possible’ surgery when I can not even accept my diagnosis?!

I’m scared mostly of being alone again. But I will always feel alone. My plight is felt by me and me alone. It is a very solitary existence as an IBDer. As a Crohnie. It is not fun. Nor is it at all gratifying, knowing what your guts can’t do for you. It is depressing that something so fundamental as my digestive system can not work properly. That it needs care! And because no one else can see it, it isn’t as ‘significant’ or ‘as important’ as something visible. I’m scared that I will get to a point where I just do something to myself, to push my body to need a surgical scar to prove a fucking point.

Alas, I am not that stupid. I am scared, and thus I am silent in that sort of anger. The white hot anger that hits you without warning from something as simple as someone snip of ‘wisdom’ one morning. It is unavoidable and usually not prompted.

When it comes down to it, I put on a brave face.

It is like a wearing a mask, something you can only take off once you are completely and utterly alone. And – it would now seem – sat at a computer screen, writing a post from a Wegohealth prompt. Oh, the irony.

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