Friday, 4 November 2016

"You Can't Be That Sick If You..."

So I've not had a great few weeks, well couple of months if I'm honest. As many of you know, that suffer with a chronic illness, flares come and go. Well this one doesn't seem to want to go and as it seems I'm going to have to go back on the steroid tablets. Back to the joys of the puffy moon face, yay! -_-

Anyway, since this bad spell started due from the usual little stresses we face in our daily lives, I've noticed how often people say to me 'you don't look very sick' 'can't be that ill if you can go out' 'if you ate such and such you'd be cured'. Well why don't you just shut your mouth?! It drives me insane how much those sorts of comments get said to me on a regular basis. Unless you suffer with the same condition as someone I honestly think you should keep your opinions and comments to yourself. Plus everyone that suffers with either crohns or colitis can have different symptoms and side effects depending on treatment. What works for some doesn't always work for others. I've learned this a lot since getting UC as what works for my Mumma who suffers, doesn't always work for me and vice versa.

It seems that if you are that unwell that you shouldn't be at work or you shouldn't go to friends birthdays for example. I've known some people take a day or two off for a cold! I mean, could you imagine if we did that when we're ill which is almost everyday?! We wouldn't end up keeping a job for long haha! As a hairdresser I have clients everyday, I love my job and couldn't imagine not working. So although since having ulcerative colitis and having daily pain and whatnot I've learnt to cope with it and work through it so I don't have to let clients down. There have been days where I've woken up and can't physically lift my head or move my legs to get out of bed in the morning or I can't leave the toilet in case of an accident so I've had to call in sick. I hate calling in sick. I cannot stand letting people down and feel guilty all day. So to then have people comment, 'but you were fine when I saw you yesterday' and such n such, it's just so frustrating because it's such a hard thing to explain if you don't suffer with a chronic illness. 
The worst thing for me I find being so young still is that people seem to expect you to stop living. I don't want to stop doing things I enjoy just because I have an illness out of my control. It takes over enough of my life as it is! I've always loved going to festivals, so even though I was in hospital earlier this year I wasn't going to let that stop me. You just have to prepare yourself. I make sure I have enough medication to see me through, that I've taken it easy prior to the event and that I give my body a day or two after to recover from it. Why should we have to miss out just because we're ill?

As I said at the beginning I've had a rough few weeks, and as I'm one to vent on my social media accounts at times, people couldn't wait to give me grief after a night out. I'd been a tad fragile since coming back from a holiday as I came back to a lot of stressful situations. As some of you may know stress is the main trigger for a flare up. My baby sisters birthday was coming up and we had planned such a lovely weekend for her I was determined to be well enough to attend. I ended up having to take a day off work the weekend before so I made sure I wasn't too busy for the rest of the week to take it as easy as possible and when the day came round I felt fine! I was so happy as I knew how much she'd been looking forward to it, hoping everyone would attend. As we celebrated through the night I was so happy I hadn't had to let her down and that 2 months of careful eating, taking it as easy as possible and no drinking whatsoever had paid off! But like always I was ill the next day, which I always prepare for so I make no plans to do anything except recover in bed haha! Yet as soon as the pictures went online the amount of remarks I got just really pissed me off. People assume/think you shouldn't drink if you're ill. Who says I wasn't just having a soft drink? I admit I wasn't but then again who likes to be the only sober one in a club when all you're friends are pissed haha?! Plus I know my limits. I'm still not well now but I know its from all the stress I've had going on which is proving hard to cope with/resolve so that's why it's back to steroids and more blood tests.

 Sister's Birthday Night

Halloween Party

I just really needed to rant to you guys about this as I feel it's something a lot of us 'sick' ones have to deal with. Our chronic illnesses keep us very limited and control enough aspects of our lives as it is and I feel if we feel strong enough one day to go out and do something 'normal' then fuck it! I know I for one feel like a prisoner in my own body enough as it is without someone that doesn't understand telling me how I should be living my life.
Enjoy each moment you're well enough to do something fun, life is short as it is. Don't let your illness and others unimportant opinions stop you from doing what you want it life!

Much Love,

Tuesday, 11 October 2016

The Bum Note...

Back Story

3 years ago, back in the summer of 2013, what doctors had always dismissed as just IBS (irritable bowel syndrome) had started to become a lot more unbearable and worrying. From a very young age, as long as I can remember, I'd always suffered with a 'nervous' tummy. I'm the sort of person that gets stressed over the smallest thing even if I know there is nothing I can do about it so I may as well not worry, I can't help but get in a state over it. This summer however, it seemed to have taken a turn for the worse. It got to the point that I lost so much blood (whilst going to the loo) that I passed out! This happened numerous time. It was then that I realised I couldn't ignore how bad it had got any longer. I needed to tell someone.
Being the anxious person I am, too nervous to tell a doctor, I confided in my Mum. It wasn't till I spoke to her that I realised how serious it actually was. You see, the symptoms I was having are exactly the same to those of bowel cancer and ulcerative colitis, both of which my parents have suffered from. This instantly raised alarm bells with my Mum seeing as she has UC and my Dad passed away from bowel cancer. It was then I decided to see a doctor.

My Symptoms

  • Various food intolerance's
  • Urgent and painful bowel movements
  • Diarrhoea
  • Blood and pus in my stools
  • Constant daily stomach pain/cramps
  • Dizziness
  • Joint Pain
  • Tiredness
Getting a Diagnosis 

Trying to get an answer for my illness was proving difficult, especially considering my family history it still frustrates me to this day that they didn't take me more seriously. At first they kept telling me it was just my IBS. Then after a lot of nagging and going back every month they finally sent me for a colonoscopy. Results came back as 'slightly inflamed' which in most cases means colitis. But no, despite my symptoms and results they then insisted it was a side effect to my anti-depressants. After a year of nagging and getting worse they FINALLY did a flexible sigmoidoscopy. That was when I finally got told I had Ulcerative Colitis.

when I was first diagnosed on steroids/trying to control weight with gym

Moving Forward

Since then I've been in and out of hospital, had various medications to manage it and regular blood tests. I thought I'd look into my condition more, as my mum had tried to shelter me from how serious it was growing up. I soon realised all the side effects that come with it and how life changing it can be. It made me feel very lucky I'd already met my boyfriend Oliver who also looked it up and stood by me whilst I was getting diagnosed. Earlier this year, back in March I ended up getting so ill whilst at work that I was admitted to hospital. It was a rather scary time for me as all the tests were coming back clear so they couldn't figure out why I was so bad and in so much pain. During that rough week I ended up meeting the surgeon and getting marked up for a stoma bag. Luckily they decided against that and thought they'd try one last form of treatment. Being marked up for the bag terrified me. It made all sort of thoughts run through my head, mostly, 'will Oliver leave me', 'what if no guy ever comes near me again', 'what if I can't become a mum'. Although I found a couple of girls on Instagram (xqueenwaspx and summervalentine_) which did give me some hope, I was still scared. The unknown is always scary.

during my stay in hospital

2 months after leaving hoospital, weight gained from trearment & swollen tummy from pain


Since leaving hospital I'm now on 3 types of medication to manage it. 2 of which are tablets (which means 9 tablets a day) and the 3rd is an infusion to which I have to spend a day in hospital every 6 weeks in which I am hooked up to a drip. When I came out of hospital I was on a lot of steroids, which I've been on and off on for the last 3-4 years. The steroids are what have probably upset me the most. They've made my body change dramatically the last few years which made my anxiety and depression a lot worse as it massively affected my confidence. Although I hate getting attached to a drip every 6 weeks its a lot better than getting a bag whilst I'm still so young. I've also gone from seeing my consultant once a month to her being so happy with my progress its now 6 monthly appointments and I'm off the steroids! It's the longest I've been off them (4 months and counting)! In the last 3-4 years due to medication I have gained a lot of weight. Pre steroids I was always very tiny, being only 5ft3 I weighed only 7 and a half stone. Not a lot but it was normal for me, everyone in my family has always been tiny. Within 2 months of being on steroids, before even being diagnosed, I put on nearly 2 stone. Since then my weight has yo-yo'd due to being on and off medication, trying to control it through exercise as I wasn't allowed to diet even though I was eating next to nothing at the time. There was a point for 3 months all I could have was smoothies! No solid food at all! And trust me, being a foodie kinda girl I struggled massively haha! Since leaving hospital back in March, where all I ate was a slice of toast each day for almost a week, I ended up at my heaviest of 10st12lbs. This to me was almost soul destroying. I know I didn't look big, and that weight is still healthy and not in any means 'fat', but from being so tiny before I felt like an elephant. To be honest, I still do. I literally felt disgusting and couldn't understand why my boyfriend Oliver had decided to move in with me that month. I struggled to look at myself in the mirror without breaking down into tears so it was beyond me how he could share a bed with me. Let alone hold my hand and tell me he loves me.
So, since coming off the steroids in June time, still unable to do any exercise due to my body still feeling so weak and not having a very good diet, (due to healthy foods I can't eat), I've managed to lose almost a stone and I am beyond happy! I do have a long way to go but the fact I can eat solid food now and not have constant stomach pain all day, everyday, not being scared to eat, its a big deal so I'm happy.
Progress is progress. For a long time I felt I'd take one step forward then 3 steps backwards. Although having colitis means I'm always kinda ill, I'll always have daily struggles due to fatigue being a massive side effect, but right now my illness is manageable.
And manageable is good for me.

having my infusion

So, this is where I'm at right now. Having daily struggles with side effects but at a manageable state. Maybe by my next appointment with my consultant, providing there are no flare ups I could be in remission. But who knows! Hoping my body will soon start to feel stronger again so I can get back to the gym as being a food junkie I need to be in the gym haha! Anyway, I thought I'd start this blog as a place to vent on good or bad days, share the little things that get to me about living with a chronic illness and maybe give people also suffering a place to share their thoughts/battles. Also hoping that maybe it gives others that don't necessarily suffer a chronic illness but know someone who does, a better understanding of what they're going through.

Much Love,