Thursday, 31 December 2015

Reelin' In The Rears

It’s that time of the year when we begin to reflect on the past 12 months/drink too much/worry about not having anyone to kiss at midnight/contemplate suicide. Depending on your viewpoint, this ‘reflection’ can involve getting drunk and internally screaming THANK GOD THAT’S OVER (usually my favoured option), or perhaps fondly remembering what has gone by with affection and gratitude.

For me, this year has been difficult, stressful, painful, and WONDERFUL.

2015 began, as most years do, in January with me having been nominated for 4 WEGO Health Awards. I made Finalist in two categories! Beyond my wildest expectations and an honour to be listed among some amazing health advocates!  It was also a joy to see some of my favourite IBD writers take prizes. Very proud to be amongst others raising awareness on such a grand scale.
This past 2months I’ve been nominated in the UK Blog Awards, and for Healthline’s Best Health Blog of 2015. A thrill and a lovely end to a busy year! I don’t expect to win either of these as they are fiercely fought contests, but again I am delighted to be listed amongst such talented individuals!

In May I started my Infliximab treatment. This is the first biologic treatment I have been on, so naturally I was very apprehensive. After bombarding my IBD nurses/consultants with a million and one questions I braved my first infusion. I always prefer to be independent around my health but this time I must admit I was afraid and felt alone. However the treatment has proven successful and is keeping any active disease at bay. I am still floored from time to time and struggle in the weeks leading up to my infusions but so far so good. I understand this intestinal bliss won’t last forever, but I am enjoying it while it does nevertheless.

In August my lovely Mum turned 70! We celebrated with a lovely lunch together with my brothers. She is as vibrant and full of life as she was when I was a child and I am proud to call myself her my friend as well as her daughter.

In September my beau and I celebrated 10years together. A decade with the man I love. By no means has our relationship been a smooth ride, but who can say spending 10 years with someone ever is? Love changes and grows as you get older and I adore living through that with him. 

In October, after a long hiatus due to fear of rejection, I finally started to receive responses from my having sent away my finished manuscript. My book on my life with Crohn’s Disease  was accepted by 3 publishers and I’ve signed with a fabulous and friendly publishing house who are planning to release my book in Summer 2016! I am still in shock to be honest. Every step of the process is more intense and exciting than the last and I am relishing being such a close part of the books’ development. So thrilled for you all to read it – my life and bowels are in that book, and messy as that may sound, I hope that helps even one of you in dealing with your own defunct insides.

In late December, we added a new addition to our growing menagerie (of two humans and two cats) – a massive dawg. His name is Lucky and he’s had a tough old life for his mere 3 years. He’s the softest and sweetest dog on the planet and that’s coming from a well-known cat lady. We are going to give him a great future in a happy, loving home.

So as I head into 2016 I have lots to look forward to and lots to keep me pushing forward. Thanks to all of you for your continued support and love, and know that it’s reciprocated fully. But please, one more restraining order and I’ll be arrested. Happy and healthy New Year to you all, I love you! xox

Tuesday, 22 December 2015

Bowel at the Moon

[Names have been changed to protect the identities of (potential) murder victims] 

Dear Sir/Madam, 

Actually, scrap that, let’s go with To Whom This May Concern.
I’ve always hated 'Madam' if I’m honest. When people refer to me as Madam it makes me feel like I'm 80 years old. Or an owner of a brothel. It's just a personal dislike. It doesn't make me want to slaughter the person who says it; lots of other women/brothel owners love it I'm sure. But as I do dislike it, I'll inform whoever says it of that fact so and we both move on. Easy as that. 

Explaining you have a bowel disease; apparently not so easy to move on from. 

The reason I’m writing to you today is because it’s become apparent that you just don't ‘get it'.
By ‘it’ I of course mean my chronic illness. You say you get it. Sometimes your actions even show me that you understand.

But you don’t.

If you did, you wouldn’t question me. You wouldn’t make me feel small for something out of my control. Something that already makes me feel weak and worthless a lot of the time.

Me, I regularly profess I don't want, and never have wanted, any special treatment for my condition. But, (and it’s a big but here); I would VERY much appreciate some allowances - if you're unsure what I mean by that then perhaps consider the same allowances you would afford a man/woman in a wheelchair for example. You would undoubtedly appreciate they'll more than likely need to use a lift, or an accessible toilet, and you’ll therefore allow them unfettered use of said facilities. You wouldn't question why said wheelchair-user may take a little longer than your average Joe/Joanne to use these facilities, because well you can SEE that they are disabled! It's obvious! Plus it would open yourself up to a nasty lawsuit/grievance/public humiliation, and you wouldn’t want that.

You might even be accused of being ‘disablist’. Imagine it – You, versus a man/woman in a wheelchair. You’d be publicly shunned for your disgusting prejudices. You’d be vilified by your co-workers. You’d feel powerless and helpless to explain how you truly feel despite initial appearances.

Which brings us neatly back round to the point of this letter.

I’ve suffered from Crohn’s Disease now for over 6 years. It’s been established I’ve probably had the condition since I was very young, it only came to the fore when my symptoms became unmanageable. The reason I mention this is that I’ve felt my body was ‘wrong’ before I really knew how it should perform. I’ve felt I’ve had to justify why I feel certain ways for as long as I can remember, before I knew why myself. So when I finally did establish what was eating me up from the inside out, it was a relief. A massive mystery solved and confirmation I wasn’t imagining it – I was different. I AM different.

You haven’t had that same time to get used to the idea. That’s fine, I understand that and I of course make allowances for that. I try to keep you informed of my condition and ensure I follow the rules of a sick person to a tee. I don’t ask for anything more than a little understanding. I don’t expect you to suddenly gain a PHD in bowel disease – I haven’t.
But I do ask that you listen, and try not to judge based on your own experiences, or worse, on looks alone. Doing these simple things is truly one of the biggest compliment you can pay us.  

So when faced with someone, like me, with an invisible disability, please try to remember that we are struggling. I am not exaggerating when I say that every day is a struggle. It’s incredibly hurtful to feel demonised through no fault of your own.  Because you can’t see me rolling up in a wheelchair or bandaged up like a mummy, doesn’t mean I am ‘well’. Especially when I have repeatedly told you so.

Because you can’t see my illness, doesn’t mean it isn’t there. It’s with me every day of my life. You only have access to a tiny snippet of that life, please don’t make it any harder than it has to be.

Yours in love and kittens,

Kath xox

Saturday, 19 December 2015

This Is How We Do It

In living with chronic illness, a phrase you may often hear from outsiders is “I don’t know how you do it!” This very phrase was said to me a few days ago and it got me thinking, ‘how DO I do it?’

The ‘it’ in my case is Crohn’s Disease. More specifically, the ‘it’ in this aforementioned conversation was a colonoscopy. ‘Doing it’ in the case of attending hospital, getting treatment, undergoing surgery and all the other nasty asides to living with IBD are really ‘done’ without much thought to be brutally honest. They are unfortunate necessities. A part of my life I really have no say in. My body makes the rules and I just obey them.

In terms of the fear and loathing of Crohn’s related activities, I’d say that definitely dissipates over time. Although some I do certainly dread more than others (e.g. bowel prep, getting a camera fired up my backside, blood tests in spent veins and having my stomach opened up to name but a few). The ‘fear’ of undertaking all of these things lessens over time and experience (certainly for me) but doesn’t ever disappear entirely. I think that’s entirely natural. Much like walking home alone in the dark, I don’t fear it until I’m ‘doing it’. And even then I have a rape alarm and umbrella on hand in case of danger – luxuries I’m rarely afforded/allowed in hospital.

I like to think I’m pretty independent in terms of dealing with my own healthcare. I talk about it openly on here of course, but not as much as I probably should outside. That’s more out of ‘fear’ I suppose; fear of upsetting the people I love and unnecessarily worrying them. Although I often wonder what my limit is? How ill do I get before thinking it IS ok to make it known? They have already been through so much due to my illness that it almost feels selfish to open them up to more pain. But not talking can be just as damaging – so it needs balance – not allowing my illness to overwhelm me and allowing other people to help lighten the load can make me and my loved ones feel better. They feel helpful in a generally helpless situation and I feel less alone. Of course ‘doing it’ with others is always infinitely better. (Stop sniggering).

So how do you do it? Just start by putting one foot in front of the other, every-day. If you stumble, let someone take your arm. If you happen to ‘stumble’ outside Jon Hamm’s Hollywood mansion and he has to lift you aloft singing Up Where We Belong then nurse you back to health, spurring him onto proposing marriage, then even better. 

Sunday, 13 December 2015

It's the Most Wonderful Time of my Rear!

Not being American or Canadian, I don't tend to 'give thanks' for things at this time of year. I'm Scottish, so I tend to see the negative in life 99.9% of the time, and my default facial expression is one of disdain. I exaggerate of course (although only slightly). But in general, in the UK we are renowned for looking on the gloomier side of life. 

Is that the fault of the 'gloomy' weather? 
Is it the government? 
Or perhaps it's the soul-crushing disappointment we feel, stuck in jobs we hate day in day out waiting for the sweet relief of death to take us? 
Or maybe it's all of the above?
(What was it I was saying about us looking on the gloomier side of life..?)

But as I approach the end of another year, I've decided to try something novel. I've opted to attempt to waltz into 2016 with a click of my heels and a bag filled with the happy memories I want to keep going forward. I want to take some time to reflect on all the good in my life. I'm not going to make resolutions; I don't really see the point - mostly they just make me feel like an underachiever when I inevitably break those 2 weeks into the New Year. Plus, my heart breaks for all the gym staff laid off after February due to lapsed memberships. 

So what am I thankful for?

I'm thankful I'm still alive, and for the doctors and nurses who help me stay that way. 
I'm thankful for the man I love and my family and friends. 
I'm thankful for cats. And Jon Hamm and James Spader. 

All of those things make me happy in their own unique and wonderful ways. This year I'm also thankful for my treatment: Infliximab. This is my first year on a biologic treatment and so far so good. Thanks to these infusions I'm not in pain every waking minute! I'm 'better'. Like any Crohn's treatment it's by no means a miracle worker, but despite a bumpy start, it's certainly doing the trick for me so far. And for that I'm very grateful. 
Having an incurable illness and trying something new can be incredibly daunting. It's essential to stay as well as possible and for me that means finding the right treatment and sticking to it. Deviating from workable medicine is dangerous and life-threatening. (Special shout-out here to the daily emails I receive telling me Aloe Vera/ Manuka Honey/ Paleo Diet /etc will cure me - you are the anti-Christ but I do so admire you're perseverance!)

I'm also thankful to the amazing publishers who have taken a chance on my writing and are through some miracle choosing to publish my Crohn's book in 2016! Potentially theeee most exciting thing that happened this year, aside from that night Mad Men AND The Blacklist were one in one night. This book is exciting as it has both made me feel more confident in my own abilities, and is granting me the chance to help others on a wider scale. I know I would have welcomed the opportunity to learn about living with my illness when I was diagnosed and terrified - I want my book to do just that! (Not terrify, help I mean. Although I do talk about my rear-end quite a bit so the first point may also be applicable).

I'm also thankful for all of you. Wherever and whoever you are. You take the time to read my ramblings and for that I am VERY grateful. I promise to untie you and remove the cocktail sticks from your eyes on New Years Eve. 

So Happy Christmas to you ALL! Let's raise a delicious glass of bowel prep to a Happy (and healthy) New Year! X

Tuesday, 8 December 2015

Every BODY Hurts, Sometimes

Everything” - was the am-dram response I gave earlier today to the question, “What hurts?” from a friend. It may sound dramatic and borderline bullshit, but at the time it was a frighteningly accurate description.
Allow me to set the scene: I’d eaten some lunch; nothing wild, no endangered species lathered in butter, no sizzling spicy concoctions. Just some chicken and some salad. Oh and a bit of potato too, but even then I only ate the inside, leaving the skin as I know it destroys me. So, a boring, but non-hazardous lunch – YOU WOULD THINK. But you’d be WRONG. And you can tell how serious I am because I AM USING CAPSLOCK.
Today ‘everything hurts’ is an accurate portrayal of how I am feeling. Boring lunch or no boring lunch.
My bones and muscles ache. My stomach is cramping and pained. My head is splitting. My eyes are itchy.
The list goes on. (But not here, and not right now, because I would like to retain at least some readers by the end of this post). The reason I’ve taken to my blog to electronically whine about all of this is because answering that question today and feeling like a drama queen stressed me out. It frustrated me that answering questions on my disease honestly, often has such dire consequences; even in my own head! I know I am not lying or bending the truth yet I can still feel like a fraud saying it out loud.
How is it possible to feel pain, and then feel shame when audibly expressing it? (I suppose ‘shame’ isn’t the right word; maybe frustration?) A feeling that happiness, and ‘normal’ conversation is thwarted by a constant nagging pain. Crohn’s is that annoying boy who used to pull on your bra strap, or that puddle you step in with suede shoes on. Always putting a dampener on daily life.
It’s possibly the raised eyebrows and the perceived doubt from others imposed upon us when we convey our illness. We look fine after all. I can’t even really blame people for this doubt; I sometimes look at myself in the mirror and even though internally I feel like Satan has set up home in my intestines, I still look a million dollars (well… maybe a tenner). That alone can have even the most diseased women doubting their symptoms. We learn to question our every twinge and hold off from seeking help because ‘it could be worse’ or ‘it has been worse’. But that can also be dangerous.

If we are struggling we should vocalise it. Not to doubt ourselves, or accept doubt from others, but to trust our gut. Even if it’s the gut causing all the drama in the first place. 

Thursday, 3 December 2015

Day 3: #7DaysOfIBD

Day 3:
Well firstly, It’s been an exciting few weeks for me, as I've recently signed a publishing contract for my first book! I am still in shock that it’s really happening. The pessimist in me is still waiting for it all to go wrong but I'm trying to live in the moment and ENJOY IT.
It’s on Crohn’s Disease and is designed around my own experiences. I hope it helps someone like me. I know I certainly would have benefited from something practical and light-hearted when I was diagnosed. Everything seemed so bleak and hopeless. I was bombarded with information (and worse, misinformation) and medical facts and figures that were impossible to take in. But nothing on how to cope day to day. After the initial shock of finding out what was wrong with me,I was still at a loss as to how to ‘live’ with my new disease. I'm hoping that my writing will help at least one person in the same situation.
But I'm not here to plug my book! (Which will be available in mid 2016 ;) ) I merely mention my news as it serves as the precursor to my update of the day. In my whirlwind of nervous excitement and celebration, Crohn’s has snuck up on me. I've been absolutely loaded with the cold for what seems like months now, and my immune system is at an all-time low due to my current Infliximab treatment.
I'm finding this week a struggle and am floored with exhaustion. But the light at the end of my colon is my good news. This is a rare occurrence and although in living with, and writing a book about my disease it’s been my every waking thought, it’s nice to sometimes forget. IBD makes that harder than you think. Almost impossible on days like today when I feel so tired of it all. 

I have to force myself to focus on the good in my life and rest where I can. I hope all of you are able to do the same today my friends! xox

Wednesday, 2 December 2015

Day 2: #7DaysOfIBD

Day 2: 
Woke up in a lorryload of pain today. My BF who is currently on holiday, offered to nurse me/do unmentionable things to me if I sacked work and stayed in bed. Unfortunately I am a sucker for punishment and don’t want us to lose our home and cats so grudgingly went to work instead. 
It’s going to be a hard day; excruciating pain at my desk makes it hard to concentrate on the job at hand and slapping on a smile is easier said than done. It can be practically impossible to grin through pain. You can't focus on little else. And don’t even start me on the fatigue! No amount of sleep is ever enough. So when your colleagues arrive and complain of how 'tired' they are, it can often be a major tolerance tester.
As with most days I’ll have my daily dose of ‘suggestions’ on how to best treat my disease. Before 9.30 yesterday I was suggested Manuka Honey and Aloe Vera. On both occasions I smiled and said “well if it works for you that’s great” then silently considered all the ways in which I would gut them and bury them under my patio if I could get away with it/had the stomach for it.
Being offered suggestions on what we should and shouldn’t do is a common aside in living with IBD. What we eat is watched and judged (“should you be eating that?”), how often we visit the bathroom is monitored (“you were away a while…”), how we look (“well you look ok…”), and how often we are unwell is pressed (“but you were sick last week…”). Those are just a few of the enquiries we encounter on an almost daily basis.
Some of these comments can come from loved ones though, and in almost all of these cases; said with care and concern. On the whole I try to remember that the majority of people proffering advice on my illness are doing it with good intentions and a good heart. I'll try to remember that later today when I'm water-boarding them with Manuka Honey.