My Disease: What life is honestly like living with Ulcerative Colitis (diagnosis - now)

Sunday, 5 November 2017

My disease is Ulcerative Colitis and it is going to be mine forever! 
The time feels right to start raising awareness and sharing my story because my disease is not  going anywhere, and it certainly is not going to beat me. Please don't let the title of 'My disease' scare you off because I want these posts to be knowledgable, helpful and informative. Having a chronic disease has become part of daily life to me, I want to write these posts to share my experiences and not feel isolated throughout.

This is the post where I talk about how my life has been impacted by this disease and it will probably be the most raw, emotional and honest post I will ever write. Before you read this post I just want to say that regardless to how I have felt, my life the past 8 months has included so many unforgettable times and the majority of the time, I can focus on the positive. This post is something personal for me to reach out and find if anyone can relate, to not feel so alone...

People say when you're diagnosed with a chronic condition you go through stages; denial, anger, bargaining, depression and acceptance. You're mind goes into meltdown mode because you know this  disease is going to be with you forever and you question how life is going to change. You want to look on the bright side but it feels like there isn't one.

Living with UC has made a few things arise in me; anxiety, isolation, unreliability and a general mix up of my life.

Anxiety was never something I'd had to deal with in the past and something I'd never imagined myself suffering with. Of course I got nervous on occasion, yet it was never anything worse than a few butterflies which always subsided. I've always known about anxiety and the affects it has on peoples lives, but I always felt too confident and self-assured that I'd never be in that position.
If you'd have told me in January that by October I was going to suffer with anxiety, I wouldn't have believed you.
My main anxiety stems from my urgency to go to the toilet with 0 control over when and where that will happen and what the consequence might be if I don't find a toilet in time.
I do everything I can to possibly minimise the chance of an accident; travelling on trains with toilets not trams, keeping my radar key with me at all times and locating the nearest toilets wherever I go but it is truly exhausting. I worry so much when I'm out of the house and by worrying I feel like I'm not behaving like myself. My house feels comfortable for me, leaving it brings so much anxiety sometimes I think why bother? I get upset because I know this wasn't the way I used to be, I'd always be out at college, working or with friends and now the thought of any of that is so daunting.
 I hate it. I try my best to push myself to go out and mask these insecurities because I know the longer I contemplate what could happen, the more anxious and worked up I'll become.
 When you're already worried about what exactly this disease and all these medications are doing to your body, feeling worried about leaving the house doesn't positively add to the equation. When I reach clinical remission and am no longer experiencing symptoms, then I am hopeful the urgency will go along with my anxiety surrounding it.
For now, anxiety is making everything much harder to cope with than I've ever known. Being somewhere alone, going on long car journeys, trying to go for a nice walk, it makes my mind tick more and more and builds up anxiety because who knows when I'm going to need to go.

Emotionally, I feel this disease has made me feel isolated. Throughout my life I've always been the friend that wanted to help, be the one to pick people up if they were feeing down. I always had a positive outlook on life and I loved that. Having the role shifted and desperately needing help myself, I struggled. I don't think I've ever wanted to admit that I am ill or that I can't do things exactly the way I used to. I tell my friends and family that I am okay or that I'll be okay because I really really want to be! Telling yourself you are and actually being okay are different things.
My recent colonoscopy report showed huge improvements which was amazing to hear, yet when you're still suffering constant symptoms it's hard to take it as a positive.
I feel isolated because it's hard for people to understand the emotional battle unless they're going through it with me (My Mum & Dad) or have been through it themselves. I wouldn't say I bottle things up but I'd say I find it hard to express how I really feel. I'm thankful I have my Mum to break down to on the bad days otherwise I don't know what I'd do, she gets how I feel and listens.
My emotions are constantly up and down and I suppose I've isolated myself because I don't think anyone needs to deal with it other than me.
 Dealing with both anxiety and isolation are something I'm going to work on and hopefully reach out and get the help I need. I've recognised now that I don't want to feel like this because physically, my disease is improving so why don't I feel like I am?

A huge impact on my life has been the unreliability of the day to day. With this disease, you could wake up after an 8 hour sleep and be bounding to start the day or you could wake up feeling like you've been hit by a bus, as if all the sleep you had that night didn't count. General fatigue is something symptomatic of IBD, add that to anaemia which I developed through having Ulcerative Colitis and you can easily become exhausted. I know I have boundaries now and if I push myself, I'll become ill and need days of resting.
You can't work out how you'll feel tomorrow or next week, which is why it makes it hard to plan things. I currently don't work or study and as of right now, I don't think I could. Some days I feel amazing and limitless others I feel defeated and useless, every single day is different.
Take today for example, it's Saturday 4th November and yesterday I had my Infliximab infusion which is the drug I am on to try to maintain my disease. It is slowly working which always gives me a positive outlook when I have my infusions. I was determined to wake up today at 8:30, get in some exercise and have such a productive day. The reality is when I woke at 8:30 I felt exhausted and couldn't even pull myself out of bed, so I slept in till 10:30 and have stayed in Pyjamas all day as I feel worn out, have been constantly on the loo and having stomach cramps.
Just another normal day with IBD...

I wanted to share a few quotes I found online that express things perfectly.

Regardless of all these mixed up emotions, I am still fighting because I refuse to let IBD consume my life. Some days you feel like you can't take it anymore, asking yourself 'What did I do to deserve this disease?' but the reality is you did nothing.
I tell myself that even though my battle feels like a heaviness that will forever be with me, some people have battles that they know they can't win. Although the suffering this year as been so hard to deal with, I know treatment can eventually prevent this and if all fails, surgery can successfully stop the disease.

Sometimes it's hard for me to digest when I think about the way I go about life these days. I couldn't have predicted the anxiety, the isolation and the unreliability because I always thought I could be strong faced with a battle like this.
So what is life honestly like living with Ulcerative Colitis?
It is the hardest thing I've ever faced but you have no other choice than to put on a brave face, be strong and keep on battling.


Lucy Jane

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