Saturday, 28 April 2012

The First Time I.. #HAWMC

On reading the prompt for today's post, the first thing that sprung to mind was the very first time I looked at my scar after my Crohn's surgery.
Now don't worry if you are squeamish, this is not going to descend into CSI style discussions on the gruesome side of surgery. Put down the sick bowl.
I used to be squeamish. Getting diagnosed with Crohn's changed all that. I suddenly had to be more aware of my own body and things being poked and prodded into it. (Stop giggling at the back there).
This moment sticks in my mind for me as it was a massive realisation of just how much my life was about to change. For one, that part of my body was now unrecognisable as my own - I had, and would always have, a great big scar down my tum for the rest of my life.
But the main, and most amazing thing - I would no longer be in excruciating and unbearable pain, every minute of the day. This, was incredible.
After my surgery obviously I was heavily sedated and when awake was on a morphine drip to ease the pain. I remember the nurse telling me they would be coming back soon to sit me up and I laughed in her face and said "No, no, I'm fine here thanks. Forever". I was soon ordered up anyway and quickly and painfully learned to move around again while my scarred insides began to heal too. Sneezing, coughing, breathing, generally anything that required movement of any kind was VERY difficult for the next few weeks.
When my staples were taken out I got to see myself as I would be now for the first time. Scary. I was pretty disgusted with my self for a while to be honest, although I acted as though this was all a breeze. I was overjoyed to be relatively pain-free but the thought of literally being scarred for life was still a shocker.
I know I am incredibly lucky to have ended up with only a scar at the end of my surgery, but that didn't stop me looking away when I caught a glimpse of myself in the mirror for a good few months. I didn't like the way it looked, like it shouldn't be there, like it wasn't my skin, all discoloured and the way it felt to touch. I felt down that I couldn't muster the confidence to proudly show of my battle scar.
Now, over a year later I've accepted it's a part of me that's going nowhere. It's still a wee bit if a surprise at times when I catch sight of it, but not a repulsed surprise now. Just more of an 'oh well'.
It's here and here to stay. Just like me, and I know if that scar wasn't there I wouldn't be either. So in that respect, it's beautiful x

This post was written as part of WEGO health #HAWMC

Friday, 27 April 2012

5 Challenges & 5 Small Victories #HAWMC

This post asks us to consider the most difficult parts in coping with an illness, and on the flipside the good things that keep us going. For me, the most challenging aspects of Crohn's are as follows;

1). Explaining my condition to others- this often can seem relentless, the difficulty in conveying the many facets to the disease is a challenge in itself. Even more so when you have to explain yourself to the same person more than once..
2). Facing the day - this sounds more dramatic than i'd like. But the point stands. Its difficult enough for most people to drag themselves from their slumber and head to work. But crohnie's can have great difficulty in getting out of bed in the 1st place, tiredness is a major issue, achy bones and pain are common, and I'm often in a panic I'll be late for work due to several gauntlet runs to the bathroom.
3). Admitting defeat- It's incredibly hard for me at times to face the facts when it comes to how ill I am. I try to push symptoms to the back of my mind and hope they will go away as I don't want my disease to take over. Unfortunately this tends to make matters worse.
4). Complaining - Again along the same lines, I have great difficulty in conveying how I am feeling to those I care for. I hate then to worry and feel if I keep my woes to myself this will avert concern. It generally does the opposite as they know me so well. I do find it a challenge to express the extent of my illness at times.
5). Dealing with doctors- This can also be a challenge I find. Something I have gotten used to, but initially I found it a real struggle explaining myself to those in the know. Giving a doctor minimal information is useless. No case is solved without evidence. And I watch too much CSI.

All pretty tough stuff to deal with on a daily basis I'm sure you'd agree. But here are some I would consider to be my 'small victories';

1). Laughing - If I can laugh and have a giggle more than once a day it has been a successful day.
2). Eating a meal and feeling satisfied- This might sound a bit strange to non-Crohnie's but most mealtimes are a challenge in themselves, so if I can enjoy a meal without so much as a bloated tum at the end of it it's been a major bonus.
3). Pain free- Most days I feel pain in one way or another, if it's not focused on my gut it's from a headache, arthritis, backache or at my rear end. So a day where I feel nothing but close to normality is simply awesome.
4). Getting a good nights sleep- Again a challenge for many Crohnie's and an amazing treat to wake bright eyed and bushy tailed.
5). Locating a clean loo- Being out and about there is always a worry the nearest facilities will be, less than sanitary shall we say. So to encounter a tantalising toilet is a joy to behold.

This post was written as part of WEGO Health #HAWMC

Monday, 23 April 2012

Turn To Crohn #HAWMC

'Health Activist Choice- Write about whatever you like!'

When you have a chronic illness and are in the midst of a particularly rough patch, it's sometimes hard to remember that life still carries on around you. That you are still a fully functioning (albeit diseased) person underneath with a personality and everything.
This was brought home to me a few weeks ago when I felt rotten after dinner and decided to go for a lie down. My partners face fell and he said something along the lines of, "Just remember I'm left alone all night, I hate to see you go through this, but just remember I'm here too"

I'm here too.

This almost made me cry. My very first thought when he said this was 'wow, selfish' - but it really wasn't selfish at all. It was a way of expressing that we are in it together. Yes I'm the one feeling the pain and all that goes with it but he is sharing a life with someone who at times feels like she's living a half-life. Going to bed early to hide away so I don't inflict my misery on him, lying down because I'm in pain and basically making myself more depressed because I'm forcing myself to be alone.
So I'm trying a few new things. A little difference every night or so. When I feel bad I won't go to bed - if I must lie down I'll lie across him on the couch. If I feel I'm grumpy I'll try to talk to him about it to explain why. I'll try not to be alone, I'll spend time with him to allow him the chance to make me laugh or talk to me about his day or anything else in the cosmos to take my mind of it. And for me to return the favour.
You are probably reading this thinking how utterly obvious and basic these things are, but remember with Crohn's pain tends to rule. It takes over everything if you let it, and lately I've been allowing myself to be ruled. And not even in the good 'dominated' way..
No more I tell you! Because if I let that happen I'll end up being left with just me and my disease, and Crohn's and I do not make comfortable bedfellows. It passes wind in bed constantly for a start..



This post was written as part of WEGO health #HAWMC

Sunday, 22 April 2012

The Things We Forget #HAWMC

If I were making my own version of a memo reminder (as seen on thingsweforget.blogspot.com) it would look something like this: (see pic)

It's nothing too prolific or adventurous on the language front, just a simple message. There is so much hatred and anger all over the world that the only small thing it seems we can do to try to make our own corner of the world that little bit better, is to be kind to one another. Show a little compassion towards our fellow man/woman/cat. It's not difficult, well that's a blatant lie, for me sometimes it's very difficult, but trying to look beyond a gruff exterior or brash mannerisms can lead to the jackpot in terms of a reaction. Its amazing how much a pleasant 'hello' or an understanding ear can help to improve someone's day. When in the throws of a crohnic illness, this can affect some more than you could imagine.
I'd leave my memo on a bus or train window I think. It probably wouldn't last long, but even if one person saw it it might make them smile, or been think twice about how they speak to someone that day. It might even make them thank the driver when they get off the bus.. X

This post was written as part of WEGO Health #HAWMC

Friday, 13 April 2012

10 Things I Couldn't Live Without #HAWMC

'Write a list of the 10 things you need (or love) most.'

1) My beloved. He is an incredible support to me through good times and bad, and always makes me laugh. He is amazing at cuddles and.. ahem..cooking. Both vital qualities in having a partner as a Crohn's patient. x

2) The NHS. National Health Service in Scotland. Without amazing doctors and nurses i've had treating me, I literally wouldn't be here.

3) My family and friends. I can't imagine going through this disease alone. My friends and family (including my beloved) have been an endless support for me, and continue to travel along with me on my diseased journey, day in day out.

4) Good quality loo roll. I spend a LOT of time in the bathroom.

5) Wet wipes. (see above)

6) Laughing. Ok, not really a 'thing' but I couldn't get through a day without having a full bodied chuckle. It may not be the best medicine, but it certainly helps.

7) My Cat. He is the cat's whiskers. He has the cats whiskers too, because he is a cat. Sits with his backside in my face when im ill so I know he loves me. I think.

8) Music. I hear music everywhere I go, I have a varied tastes and can't imagine a world without it.

9) Socks. Decent socks are vital, especially if you live in Scotland like myself. Comedy socks are even better and if you have odd socks there is a high chance we could be friends.

10) Blogging. Since I started sharing my experiences i've been a complete addict. I love the fact that people all over the world can share in what i'm going through and exchange advice and stories. It is an invaluable tool for me now. Hooked :)


Post written as part of WEGO Health #HAWMC

Tuesday, 3 April 2012

Superpower Day #HAWMC

'If you had a superpower what would it be? How would you use it?'

My first thought on seeing today's prompt was probably the most obvious one, the power of healing. I'd love to have the ability to cure Crohn's, Cancer and every other disease and ailment (even some not beginning with 'C') and rid the world of illness and pain. 'Heal the World', as someone with a White glove once said. (My doctor).
But as I'm British and therefore feel at all times I should lower my sights, I've chosen instead to focus on a super power I'd also love to have, which is probably slightly more realistic. The power to take away 'The Fear'.
Let me explain. When you are diagnosed with an incurable disease, it's a terrifying time. For you, your family and friends, and everyone around you. The Fear comes in various shapes and sizes, from 'OMG how do I talk to her about this and pretend everything is ok?' to 'HOLY SHIT I AM NEVER GOING TO GET BETTER' at the other end of the Fear Spectrum (as I've just decided it's called).
The ability to take away The Fear from that moment, and all the moments after, wouldn't cure anything or make it all go away in a puff of smoke (I'm a modern superhero, I'd use dry ice anyway) - but what it would do is make the whole situation that wee bit easier to deal with.
The Fear is a wily bastard, he works his way into your head like a fungus and stays there, creeping up on you when you least expect it and instilling all his doubts and worries, bone-shattering terror, and all other elements within the Fear Spectrum (see it's catching on).
The Fear holds you back. From thinking clearly, from doing the things you so greatly want to do, from achieving your goals. I've been held captive by The Fear for too long. No more! Using my newly acquired superhero status I will banish my evil nemesis to the darkest part of mind, allowing him to make an appearance only at the appropriate times. For example, when Bob from Twin Peaks comes on screen, or when a moth flies past my face or when both happen at the same time. Heaven forbid.
The Fear will be shown for what he really is, nothing but a pitiful little creature who thrives on your misery. He wants to keep you captive and stop you from adapting to your new situation. Once you have conquered The Fear you are on the right track. Don't let him rule you - he really is easily defeated with a bit of strength and knowledge.
Like my superhero alter ego, you too can defeat The Fear - don't be afraid.
Oh and it goes without saying, I would've thought, on what my superhero name would be. As always I am KathFantastic. ;)

This post was written as part of #HAWMC

Writing With Style #HAWMC

I often suffer from the earth shattering fear that at some point I will suddenly run out of things to write about. I have a crohnic illness which has no cure, so I will always have new experiences and problems to draw inspiration from, but after almost every post I can't imagine what on Earth my next post will be about.
This usually only lasts a few days at most as inspiration strikes again pretty quickly. Which is a relief..
I've mainly found, more recently, I've been writing my posts on the bus to and from work. I spend a LOT of time on public transport therefore have many minutes to fill and time to ponder. When an idea for a post crops up I start to type out the main points on my phone, hen build it into a readable passage. I find this so convenient as I can copy and paste, delete chunks of useless material and when done, post it straight away on my Blogger app! Excellent. It really is blogging on the move!
When I am well, and therefore feel I have no major issues to speak of (or write about), I draw inspiration from others with the disease, attitudes towards Crohn's and new developments within the treatment of it. Who would've said being so diseased could be so inspiring?

This post was written as part of #HAWMC