Yesterday was a normal day at work and I felt ok other than a little bit tired but nothing unusual. At work I always have painkillers and a hot water bottle just incase I feel bad, and I was so glad I did. I was having fairly frequent toilet trips but this is just part of my normal day! All was normal until I noticed I had passed a fair amount of blood. This is a symptom of Crohns, but since being hospitalised and being on the steroids I hadn't had this so I panicked as to why it was happening now. Seeing bright red blood at any time for anyone is alarming, so it immediately worried me. I don't know what had caused this? I hadn't eaten anything or done anything to upset me so why was it happening? I could feel myself getting worked up and becoming more stressed and anxious which was never going to help the situation. Then came the pains. The absolutely agonising pains. I can't explain to anyone what it feels like and I think only other Crohn's sufferers would know. I could feel pains all the way from the bottom of my tummy to my chest. It makes me feel like I can't straighten properly or move easily, it's like it's taking over my body. I tried deep breathing to ease it and calm myself down but nothing was helping. I couldn't believe I was having to deal with this all at work, and wasn't even in the comfort of my own home. I emailed my IBD nurse to ask for help, and she told me to use the steroid foam enema I had been prescribed urgently so I knew I had to get home and use it. My boss let me leave early and wished me better and so I headed for the train station. My stomach had blown out and swollen so much I was sure someone was going to offer me a seat on the train thinking I was pregnant! I suppose its the same as hitting your head and making it sore - it will swell. Just as if your tummy is sore it swells. I couldn't even have my trouser buttons done up and had to lay out on the seat on the train. Luckily it wasn't rush hour so wasnt too busy. My mum got me from the station and rushed me home where she'd ran me a hot bath. At this point the pain was still bad, even after taking codeine but I was hoping the bath would make me feel better. Before bathing, I used the steroid enema and got myself into a state after seeing more blood. It is just the worst feeling to not know what is going on inside your body, and it makes me so worried to think that my condition is getting worse. I think to myself that I should be better by now, but I do know that this is a long road and with it will be some bumps, but eventually I will get to a smooth patch.
On the right is my stomach normally, on the left is swelling from pain :(
I felt so much better laying out in the bath and relaxing was doing me good. I just had one issue... Work. Friday night was meant to be my first night back DJing since June (pre diagnosis) and I was so looking forward to it. I felt like it was getting back to being 'me'. Doing all the things pre-crohns Daisy did, and getting back to my normal life. But no. It seems to always be like that, as soon as I want to get on with something and get back to my life Crohns stops me. I hate the feeling of loosing total control over my life and not being able to do the things I want to do. It's like I have been denied the right to choose for myself. I can no longer choose if I want to go out or stay at home, Crohns has to decide for me. I find it so upsetting as a 21 year old to have a disease rule me as much as I try to fight it. I was determined I wanted to DJ, I had been looking forward to it all week, but then on the other hand, I couldn't just hope I'd feel better by the time it came to go and then have to let them down last minute. So my dad phoned the bar for me (his friend runs it) and explained what was going on. They couldn't have been more understanding, so that was really helpful as I felt I didn't have to worry about that. It felt like a little weight lifted.
I got out of the bath and into my cosy dressing gown. I still could feel the pain so took some oromorph which soon kicked in. Although I felt 'out of it' from all the pain meds I could still feel the pain, it just felt like it had been dimmed, but was refusing to go away. My best friend Demi came over to spend the evening and distract me from how I was feeling, so we had a girlie night in with my sister. I am so lucky and so appreciative of all the people I have around me. I don't know what I would do without them there to pick me up when I'm down. As much as I feel alone at times, and I can't explain to other people how I'm feeling and they can't understand, I just know that they're there and I'm so grateful for that. We watched telly on the sofa while I clutched a hot water bottle and talked about rubbish, and it was just what I needed. Demi went home and then I got into bed. My sister Ellie came in my room to get in bed with me and it made me want to cry. She is very different from me, in the sense that she doesn't like to show her emotions. She rarely cries, doesn't really like hugging, and wont ever delve into how she's really feeling. So for her to come into my room and share the bed with me, really meant a lot. Even though she often doesn't show how she is feeling, I know she loves me deeply and will always be there for me. I think as sisters we connect on a special level, so I know what she's really thinking and feeling, and I know she really worries about me. She is always wanting to be proactive, and from the minute I got diagnosed, wanted to know what she could do to help. She bought cookery books, sat with me in hospital, and when I was home spent nights in with me and was always there for me. She is a level 12 sister :)
So after taking some more oromorph before bed, I had a good deep sleep. I've woken up feeling a little better this morning and the pain is not as bad as last night but I'm still not great. I'm meant to be out tonight to celebrate my friends birthday, but in reality I can't. I'm in no fit state to go out to bars and have dinner when I can't even stand up straight. It is just shit, and there is no other way to put it. But I have to remember that as well as bad days I have some good. So what I am going to do, is when I have a good day, write things down and write what was good about that day and how I felt so that when I am having a bad day, I can look back on that and know that there are more good days like that to come. And even though today is a bad day, I'm grateful that I can look out the window and see sun. Not everything is all bad.
XOXO Crohnie Girl
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