Don’t Let The Bastards Get You Down.

‘’People say nothing is impossible, but I do nothing every day’’ 

                                                                                                      Winnie the Pooh

I try to stay positive and make sure that I don’t get bogged down by everything. I tell myself every day this WILL get better, I WILL make sure this gets better. To have a year or so of my life going from the sofa, to bed or to hospital isn’t that long if it means (hopefully) years of remission.

Everyone tries to help and they all say the same thing: ‘’All you have to do is stay positive’’, ‘’this will get better’’, ‘’just take it one step at a time’’. And that is lovely, but the best advice anyone has ever given me is my 83 year old grandfather. While I was sat in a hospital bed hooked up to an IV feeling like my whole world had come crashing down around me he said, ‘’don’t let the bastards get you down’’.

me and dad-dad

And every day I remind myself of that and smile.

It’s the best advice I’ve had over the last year because he isn’t telling me what to do. He isn’t telling me about the new diet fad that someone is trying, or how he ‘knows’ it will get better (when he’s actually clueless and is only saying it to protect my feelings). He isn’t telling me to ‘’stay positive’’ because sometimes you don’t want to be positive. Sometimes you want someone to tell you how shit it is because if I’m brutally honest it is shit (pun intended). Sometimes you want to stay in bed all day with the curtains closed and hide from the outside the world, and that’s OK. Everyone says that you shouldn’t let it consume you, that you shouldn’t let it take over and they are right, but there are some days where I want to scream and cry and just be fed up. What some people forget is that for us with this disease it’s a long game, and there isn’t anything simple about it. It isn’t simply changing my diet, or just taking medication, this is my life. What the world can forget is that for us with a chronic, invisible illness it doesn’t stop.

The rest of the world only has to deal with it when we tell them about it, but for those of us with the illness it doesn’t go away when we stop talking about it. You think about it all the time. You’re still waiting for how it will effect you next. Whether that’s taking medication every day, or going into hospital, or even when you are feeling just that little bit better than you did yesterday. You’re still reminded of the fact you have a chronic illness.

It’s constant.

So sometimes I don’t want to be positive. Sometimes I want to stay in my pyjamas all day, sitting on the sofa watching my way through Netflix. There are mornings where I find out the dinner I’ve had the night before was a bad idea, and there is nothing I can do other than spend an hour in my bathroom waiting for my body to relax. There are moments where I’m so tired from the draining fatigue that just having a shower is a struggle. There are times where everything hurts: My muscles, my stomach, my joints, my head, and I truly have to just do nothing. There are times when you’re so tired of fighting that you just want to climb into bed, crawl into a ball and cry.

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Now, I am a firm believer in positivity and trying to make the best of a bad situation, but then I remember just how much I’ve been through. I think back to the months of being bed bound, the pain and the weight loss. I remember how scary the hospital admission was and how serious IBD actually is. I see all the boxes and boxes of medication I have to take, making me rattle as a walk. I remember just how much stress I’ve been battling for almost a year at only 20, and it makes me think that there are days where I’m allowed to just do nothing! There are days where I want to feel sorry for myself because I have been through a hell of a lot, and it’s OK to know that. You have to listen to your body, and sometimes that can mean you have to do nothing, letting yourself relax. To give your body time to repair itself and to find a way to love yourself again.

I’m sure as hell not going to let this bastard get me down, but I will listen to my body. At times I have to trust my gut and let myself get better by doing nothing.