Bad Patch

I'm writing this post with wet eyes and crusty cheeks, the last few days have not been good. Just as I was thinking I was on the way up after an amazing week in Vegas and feeling in control of my life and illness, it comes back to bite me.

When I got my Crohns diagnosis, everyone around me were supportive and encouraging. They all tried to say and do the right things, cheer me up and comfort me but unfortunately no one could take it away from me. It was now a part of me and something I had to deal with going forward. Everyone told me it was just a bad patch and things were going to get better, but what I want to know is when the bad patch finishes? At the moment I feel like it's never ending. As soon as things start to look up, Crohns smacks me in the face just reminding me it's not gone. I hear it. It's small, evil voice in my head... Even though you can't see me I'm still here. Even though at times you can't feel me, I'm still here. Even though you think you've got rid of me I'm still here. Always here.

I find this really hard to deal with. Most of the time I feel ok, and feel on top of things and strong and positive but I'd be lying if I said I felt like this all the time. I still have low times, and in reality I will have low times throughout my life. Times when it's too hard to hold back the tears, and times when I feel sorry for myself, and times when I just want to shut my bedroom door and let no one in. THe hardest thing about this horrible illness is the feeling that no one understands. Because my arm isn't in cast, or half my face isn't missing, I look 'well'. People always comment on how 'well' I look, but if only they knew. If only they knew how I felt in the morning when my alarm goes off after a bad night sleep because my tummy keeps me awake. How embarrassed I feel to get up from my desk and go to the toilet AGAIN. How much pain I can be in whilst sat completely stationary doing nothing. How upset I feel to stay indoors while my friends go out and have fun. How angry I feel that I have Crohns and have it for life. I really try my best to be positive, but sometimes I simply don't have the energy.

Since being home from Vegas, I have obviously been very tired. But on top of that, my symptoms have got worse. Now I don't know if this is just because the week has caught up with me, or because I have finished my course of steroids. For the majority of the week I've sat at work hunched over a hot water bottle and have literally felt that my heart is breaking. It is such a harsh reality to be met with after having the most amazing holiday. A harsh reminder that I still have Crohns. Whilst it is a massive bummer that I have Crohns, at least I now know what it is. So I can get onto my IBD nurse and explain my symptoms and she can help get them sorted. As I am having these pains and irregular stools, she has asked that I do a stool sample. My blood pressure is also very low, which happens when I am unwell, It reads 79 over 40 and the healthy average is 110 over 60. My mum was worried about this and because she could see the amount of pain I was in, wanted me to go to A&E but I really didn't want to go. I felt like I was giving in, and I couldn't give in. I told my IBD nurse everything that was going on, and she said if I was worried to go to A&E but if I could hold out she'd have an opinion from my consultant in the morning, so I decided to wait for that. I took some codeine tablets, put a hot wheat bag on my stomach and curled up on the sofa. My mum was making me cups of boiled water which I find really helps me when my tummys causing me pain. 

Although this is just shit (sorry, but there is no other way to put it) I can manage, I have amazing people around me that support me massively. I know I can get through this, sometimes I just need a little bit of reminding.

XOXO Crohnie Girl