I remember being told I had Crohns disease on this exact date last year. It was actually during my colonoscopy. I was semi awake and watching the camera on screen go over a whitish/yellow ulcerated patch and I knew that was it. After the procedure the Dr came round and told me she had found I had Crohns and would start me on a course of steroids beginning intravenously, then she left. I laid in the bed waiting for a porter to collect me and felt numb. I was still under some anaesthetic so couldn't really understand how I felt, but I know that my eyes filled up with tears. I think this was just because I was alone and overwhelmed, but once I was back in the ward I felt totally fine. I told all my bed neighbours my diagnosis and I surprised myself with how chirpy I was. The initial feeling was just relief, and then thinking that I would be discharged after a long 3 weeks in hospital. I freaked myself out with how 'OK' I was I began doubting I did actually have Crohns and maybe I made up the diagnosis in my knocked out state?! My mum came up to the hospital and I was still fine, sat on my bed reading through the information I'd been given by the IBD nurses and speaking about the next steps. I would say it took 24hours for it to actually kick in. I remember my nan & granddad came to visit me and my nan gave me a hug and all the emotion I had held in came pouring out. I burst into tears and it was in that moment I realised I had a lifelong chronic illness.
After diagnosis came steroid courses which were a joy in themselves!! Luckily I didn't experience the moon face or weight gain but I suffered really badly with not being able to sleep and feeling agitated. After 3 weeks sleeping in a hospital bed I couldn't wait for a good nights sleep in my own home, but this just didn't happen. I would be up throughout the night, waking every hour which made me so fed up, restless and angry. It really affected my moods and I wasn't myself at all. I then had a family holiday booked which should have been a week of fun in the sun, and I just wasn't up to it. I couldn't drink, I could barely eat, I couldn't sleep, I didn't feel like talking, I had anxiety about near enough everything and I just felt like I was not me. It was like I was trapped in this body I didn't want to be in and I couldn't do anything about it. At this stage I was still in denial about what was going on, and was forcing myself to be normal. If only I knew then that it was ok not to be ok. I didn't have to put on a front, it didn't matter what anyone else thought, I was going through a tough time and it was ok.
The first steroid course finished, and my symptoms came flaring up with a vengeance. Back to Basildon hospital to be put on another course of steroids. This happened 3 times in total and each time I just felt more fed up. Each time it was a reminder that I had Crohns. Each time a reminder I wasn't on top of it. Each time a reminder it controlled me. It totally wore me down. I had just turned 21 and was meant to be having the best summer of my life, and as much as I pretended I was fine and having fun, I was crushed inside. I hated myself for what my body was doing to me. I hated waking up every morning and having to fight through another day, plaster on a smile and be 'Daisy'. I didn't want to be 'Daisy', I didn't want to be anything. Being so poorly and hardly eating anything left me with no energy to fight anymore and eventually my moods became so low, it resulted in my depression diagnosis. This was the lowest point of my 'Crohns journey', my rock bottom. But if I'm honest, I didn't even want help and I wouldn't have asked for it, it was only my family that must have been so desperately worried, that picked me up and took me to the Drs to get help. Even though I hated them for it then, and just wanted to be done, I could not be more thankful for their help. I know if it wasn't for my family, I wouldn't be here today.
So with a strong support network and some help from medication and a therapist, I was able to turn things around. Anything that got thrown my way, I tried my best to make it into a positive. I started this blog to help and encourage other sufferers and for me this has really been a lifeline. It's been a purpose, and when I have struggled through something, my thoughts have been 'well now I can share this and help others'. Really, as nasty and negative my Crohns has been, it has been positive in many other ways. One being I have some real, true, solid friendships. When in times of need, people prove themselves to you. They step up to the mark or they walk away, and even though the ones that walked away have hurt me, I am so lucky to look around and see all the amazing friends I do have and to know they are true friends. It has also encouraged me to have a healthier outlook on life. I now exercise regularly, and this really makes me feel good! Don't get me wrong I love a night in on the sofa, but not being able to go out and drink and eat all the time has encouraged me to do other things like exercise. It's also meant I have got really into cooking, because everything nowadays is processed and has a million ingredients added, the best way to make 'Crohns friendly' foods is to start from scratch and really it has been fun getting stuck in in the kitchen. My mum is amazing at finding things I can eat and tweaking recipes so really it has been a bonding thing for us too. I also like sharing my recipes, when I have made something that tastes good I feel proud. I want other people to taste it and know that not everything I eat tastes plain and boring (a lot but not everything! Ha). I have even took up the challenge of doing the Sunday dinners, and managed to cook a couple of six-men roasts which has made me feel proud!
Even though I am still on a large amount of medication, have to watch what I eat/drink daily, and don't always have the energy to behave like a 'normal 22' year old, I am still alive and kicking. I can still go on holidays, I can still socialise with my friends, I can still go to work. If you would have told me all these things in October 2015, I would not have believed you for a second. I thought my life was over, but now my outlook and perception on life has totally shifted. It has made me realise what's important and what's not. It doesn't matter if I missed out on one night at the Sugar Hut, what matters is I have an amazing family, amazing friends and that means Crohns will never beat me.
Here's to many more years of kicking Crohns in the fucking arse!
XOXO Crohnie Girl
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