My Little Brown Book

My first book on Crohn’s Disease will be published in a mere matter of weeks on the 21^st May! I’m very excited to share it with you. Here I have gifted you with an extract from it (completely GRATIS!!!!) I know, I’m too kind, I’m just a giver. Hope you enjoy!

‘It’s widely known that very few people are 100 per cent comfortable in discussing their bowel movements, and until I was diagnosed with Crohn’s Disease, I would certainly not have considered myself amongst them. It just wasn’t really the ‘done thing’ in my household. I’m not sure if this mild prudishness goes back generations or was just more of a trait within my own immediate family, but it’s certainly something I became more acutely aware of as my problems in that department began to escalate. I realised I felt vaguely uncomfortable and borderline ashamed about discussing anything untoward that may have been happening below the love handles.

I don’t, in any way, blame my parents for this. I don’t blame anyone, for that matter. It may have absolutely nothing to do with my upbringing, but there was obviously some reason I felt so unpleasant about discussing my own rear end. It’s just one of those things I can’t quite place. This ‘thing’ however, made it decidedly more difficult for me to be as honest as I could with doctors and nurses when they were struggling to diagnose my illness. I felt it was easier to nod in agreement with their suggestions than to express the full extent of the aforementioned ‘uproar’ I was experiencing down there. I wanted to save myself the red-faced humiliation, and no matter how much I was told they’d ‘heard it all before’ I couldn’t escape the fact that I was actually being forced to talk about POO. MY poo for that matter.

This fool couldn’t handle her own stool.

This missus couldn’t discuss her faeces.

This burd couldn’t debate her own tur…you get the general idea.

In Crohn’s Disease a patient’s toilet activities are very important indeed. What ends up in the porcelain can be an incredibly vital clue for doctors in establishing the extent of the disease and its effects on the body. Medical professionals can discover so much from just a small, unassuming stool sample. Not only that, but they can also garner a huge amount of information from simple questioning. All of which means as a patient you really have to get to grips with ‘talking shit’. Normally an absolute BLESSING for me. They will need to know specifics. What consistency is it? Is there blood in it? How much is there, and how often are you going? I’m never particularly comfortable with this kind of bizarre quizzing, but I’m slowly trying to learn to get descriptive about it. In fact I now find that more people around me feel they can openly discuss their own bowel movements, whether I want to hear about it or not. As though I’ve unwittingly become some strange form of poo guru. A Poo-ru, if you will. People have started asking me what it means when this, that or the next thing happens in their bathroom. I absolutely do not profess to be any kind of expert on matters of the rear, however I do have extensive knowledge of various unsavoury scenarios that people tend to think gives me insight others perhaps don’t possess.

Many new (and old) patients also find this type of ‘in-depth’ colon-versation difficult to take to at first. Most of these patients, thankfully, find that they eventually become immune to the discussions with medical professionals that take place around that area. They come to realise, as I’ve had to, that it’s essential, unfortunately, in helping the doctors do their job to the best of their abilities. At the end of the day, it’s our health on the line; therefore we should do everything in our power to help ourselves get better. I often find myself getting incredibly frustrated by the fact that there still seems to be such a stigma attached to Crohn’s Disease. This stigma spreads itself across several other bowel-related illnesses for that matter. We, as humans, are all essentially the same; we all take in food and water in the same way and all expel it in the same way too. So why should we be embarrassed to discuss these things openly? That’s not entirely true of course, humans with Crohn’s often find their bodies (and in particular their bowels) don’t work in quite the same way as those without, however much we would like them too.

When you have been established as a Crohn’s patient, you may find a lot of your doctor’s time can be spent at your rear end. Not a thought I’m sure you, or your doctor, will particularly relish. Colonoscopies and other similar procedures can be invasive and often require ‘probing’. You know – that thing that aliens always do in films when they come down to Earth for a visit. One could certainly say it is an alien concept, for a stranger to drug you then shove a camera up your back passage without so much as a mojito for your trouble. Then, as if that weren’t enough, for you all to sit around and watch the show on a screen! WITHOUT any popcorn. It’s an absolute scandal! I exaggerate, obviously; you do get a mojito (if you go private).’

For more of this nonsense you can purchase ‘Go Your Crohn Way’ when it is available to buy from 21^st May (and it can currently be pre-ordered from Amazon). You can sign up to email alerts from my publisher here:

http://www.jkp.com/uk/go-your-crohn-way-34107.html

Go Your Crohn Way

I’ve been having a bit of an existential crisis lately. Not to the point that I’m so much as questioning everything in my life, but more why I have I set myself up for failure. I’m launching a book in a few weeks; I’m throwing a launch party and have been posting the link to said book all over social media in a bid to drum up interest. I’ve told EVERYONE – including the bin-man and local window cleaner. I’m both excited and absolutely terrified in equal measures. I say ‘failure’ because one of the great qualities of my personality is my ability to jump straight to the pinnacle of anxiety by assuming the Worst Case Scenario wherever possible.

I don’t always feel this abject terror. It often comes then leaves just as quickly; much like a selfish lover.

But I do feel it today. I feel a panic of “WHAT ARE YOU DOING!?” / “WHO WILL READ THIS?!” / “WHY DO YOU THINK YOU ARE SUCH AN EXPERT?!” – all valid questions I grant you. Because these queries buzz about my head like doubting Thomases’ around … Jesus? IDK I appreciate I’ve gone off-piste here, but what I’m trying to say is that it makes it harder to focus on why I am doing what I am doing.

I have spent over a year of my spare time writing a book about my experiences in living with Crohn’s Disease because I want to show the wider world that there is life beyond chronic illness. When I was diagnosed I was utterly terrified of what the future held for me; or even if there was a future. I didn’t want to live in constant pain and I didn’t want to be ‘different’. The truth was of course, I always had been. I just didn’t know it. I started my blog to help myself – it was a marvellous and magical coincidence that it helped others – so now I write to help people like you.

I don’t profess to be an ‘expert’ on all things IBD – I don’t have an encyclopaedic medical knowledge and I don’t know what some things/symptoms/medications feel like because I haven’t done/experienced everything. Neither have you.

But I do know how it feels to live with a chronic and debilitating illness. I know how it can and does affect every aspect of your life and I know some ways to make life feel a little bit better. Many of those ‘ways’ involve medication strong enough to flatten an elephant but again I’m not a Doctor here so please seek medical advice before popping pills galore. Primarily talking about your condition helps - especially with people who love you – or/and with people who understand what you are going through.

But haud the bus here, I’m, not giving up all my tips and tricks away gratis! – my publisher would have my (remaining) guts for garters.

So I am probably contractually obliged to say that you can sign up to email alerts for my book Go Your Crohn Way here:

http://www.jkp.com/uk/go-your-crohn-way-34107.html

And/or pre-order it from Amazon here:

http://www.amazon.co.uk/Go-Your-Crohn-Way-Disease/dp/1848193165/ref=sr_1_1?ie=UTF8&qid=1457786598&sr=8-1&keywords=go+your+crohn+way

So while I certainly struggle with the idea of actual real life humans reading my ramblings I hope you know that I write for you and for me; life is tough and I want to make it less tough for you if I can. That’s why with every copy of my book will be a voucher for enough drugs to flatten an elephant.

KIDDING, MUM. 

Slice Of Life

Dear Surgeon, 

{name removed to protect privacy} 

You probably don't remember me. That's fine; you see people like me everyday. 

But I remember you. Just over five years ago you saved my life. 

I don't quite know where to begin in expressing how thankful I am for that. 

Perhaps I could send you a card with a heartfelt message in it - (done that). 

I could cuddle you against your will, post-surgery - (done that). 

I could ugly-cry on you in a morphine-induced stupor and tell you I love you - (yes, I've sadly done that too...) 

But all of that would (did) probably embarrass you. 

When I say you saved my life I mean that quite literally. You performed a surgery which served to stop me exiting this world much earlier than I would've liked. 

However in doing so you also gave me my life back. I hadn't realised it was gone until I woke up. 

I'd all but given up hope of ever getting better. I'd resigned myself to a life of pain; I was in a pit of despair. 

Then I woke up and I was alive. I felt something like happiness for the first time in a long time and it was wonderful. 

I'm not sure how much of this I successfully expressed on the afternoon of my operation. I think I said something like "THANK-YOU I LOVE YOU I LIKE YOUR EYESHADOW THANK-YOU I LOVE YOU", but I'm sure you could read between the lines at what I truly meant. 

I know you probably think this is all over the top, and that you were just doing your job, blah blah blah, and maybe that's true. 

But I want you to know I am grateful for you and all you have done for me. You saved my life and gave me the chance to help others by sharing my experience. I can't ever repay you for what you and your amazing colleagues have done, and continue to do for people like me everyday, but I hope knowing I am alive and thriving goes someway to stand as a testament to your handiwork. 

Keep on slicin'; you're ever so good at it. 

All my love and intestines, 

Kathleen xox

P.S. Where do you get that eyeshadow, it's beautiful? 

Good Crohn Fun

BEING SICK ISN'T FUN. 

Seems so obvious doesn't it? You've already switched off by now haven't you? Like, 'She's lost her touch, I thought she was funny batting out bowel puns but this is just dull...' Well WOAH THERE HORSEY. My truth bomb may not have been earth shattering, but it packs a punch, bear with your best gal while she explains.

There are a lot of people on Earth, (many of them from Scotland as that's where my expertise lies), who seem to think there is some hidden bonus to being ill. In particular chronic and incurable illnesses. These people, in my experience, are generally hypochondriacs themselves, who find delight in complaining about their various imagined woes. In the realm of health obsessives these people are the WebMD of diagnosis. They've blown their nose twice in the last 24hrs so OBVIOUSLY they have a rare and deadly form of nasal cancer. It couldn't just be a cold. How foolish! 

Do not underestimate the way the mind of a hypochondriac works. They will study you. As a patient of an existing chronic illness you are after all a walking textbook. You are on hand at all times to answer and questions they may have that will serve to bulk up an existing story they've worked hard to perfect overnight. 

Of course hypochondriacs are a nuisance and a frustrating fact of life. Because they are so caught up on what may or may not be wrong with them they are missing out on whats actually going on around them. Their real life. 

My first reaction upon encountering a hypochondriac in the wild, was to get competitive. PROVE to me you are sick. You are not, and will never be sicker than me. Do not test me. Anger then bubbling irritation. How dare they try and better me with tales of illness. I'M the sick one at this party mate. Like Highlander, there can be only one. But anger quickly turns to boredom and pity - if there is such stock put in creating imaginary problems for yourself what's missing from your life? Where's the gap you need to fill? Show me on the doll where he hurt you. 

But let me come back to my original point. Being sick is no fun. It's often a full time job. There is no relief from chronic illness even when you are physically well. It's in our every waking thought because it's utterly all consuming. It has to be factored into every decision we make; it's exhausting and infuriating and often embarrassing.

 

So when you are laughing along with me and saying you'd LOVE the extra breaks I get, bear in mind I'm spending that time trying to expel undigested food through a diseased intestine. (Think rubbing salt into a paper cut, but with internal organs). Or maybe I'm vomiting, or practicing breathing exercises so I don't have a panic attack or pass out. Maybe when you tell me you'd love to have extra time for appointments bear in mind I'm going to leave work to be injected with drugs which will make me feel I've gone 3467477 rounds with Rocky Balboa. [80's Rocky obvs, I could probably take modern day Sly]. 

I might be going to pierced with yet another needle or given more bad news. I'll have to return to work with that news in my head and try not to cry/bleed and hibernate for the rest of the day/my life. 

Any of that sound fun yet? 

Belittling chronic illness is rude and offensive. Implying we are winning some imaginary lotto due to an extra toilet break here or there makes you look like the Worlds Biggest Tool 2016. Living with an incurable condition is exhausting, debilitating and a daily struggle. We don't need to waste precious energy arguing with you over what that second sneeze of the day means. 

Besides we all know it means imminent death. Sorry about that. 

Blue Ruin

I’ve made a lot of bad decisions in life; like staying in unhappy relationships for too long, allowing myself to be manipulated by people I once thought of as friends, buying the smallest jar of Nutella. But starting a blog about my illness hasn’t been one of those bad decisions. It’s something that has allowed me to transform one of the worst times in my life into one of the most positive. It’s become an outlet for me to express my fears and struggles in adapting to an incurable illness. It’s also offered others in the same or similar position, a chance to feel less alone and maybe not as terrified to face their future. That makes my heart swell and is something I am incredibly proud of.

I do feel selfish sometimes when I write for ‘me’.  I often single-mindedly post here to help me deal with feelings I perhaps struggle to process, things I feel I can’t say to my friends and family, or to allow myself a platform for discussion. But it helps, so I forgive myself a little introspection and perhaps vanity. It’s also important for me to remember that you don’t have to read what I ramble on about – you have made that choice, so there the selfishness ends. 

I haven’t felt inspired to write for a little while now, perhaps because *SELF PROMOTION CLAXON* I’ve been polishing my book in preparation for its publication in a few months’ time. Or because I’ve been feeling distinctly below par with my own disease and that in itself is exhausting. OR, because I have been utterly floored by a lingering bout of The Blues.

(Answer: it’s all of the above I’m afraid).

I don’t often talk massively about my own struggles with depression. Mainly because I’ve never considered the feelings I have to be as intense or serious as to be referred to as ‘depression’.

But then you don’t have to be ‘intense’ and ‘serious’ to feel depressed. I don’t have to put myself in an imaginary box to give myself an imaginary label. I just have to admit my own feelings to myself and those around me.  Openly saying ‘I’m depressed’ doesn’t change me in any way; no more than saying I have a bowel disease does. Although it doesn’t always come that easily.

I suppose even I still have a skewed view on depression until recently. These people should be in dark rooms, despairing of their lot while watching the rain fall as All By Myself plays in the background shouldn’t they?

The truth is, depression, like my invisible illness, is concealable. Easily hidden with a smile and a laugh. An ‘I’m fine!’, or excuse upon excuse as to why you are cancelling on your friends yet again. It can go unnoticed for lengthy periods – if those around you don’t know what you are going through and you are unable to tell them you’re often left rummaging around alone inside your own head. Not the best place to be when it’s your state of mind that’s the problem.

Lately I’ve felt like I’m sinking.

I have felt hollow and pointless.

Weepy and miserable.

Unattractive and unworthy of love.

I haven’t written about this because it seemed so ridiculous. Who was I to advise anyone on how they should or shouldn’t steer their sickly ship when I was so obviously drowning myself? But on the other side of the coin – why did I suddenly forget that I do the same thing with my disease? I talk openly about my physical pain so why shouldn’t I write about my mental skirmishes too?

The difference is massive.

Because when you are depressed you don’t want to talk. You don’t want to do anything. With anyone. You  feel numb. You can be in a room filled with the people you love most in the world and find yourself unable to raise an ounce of enthusiasm. I can’t explain that, and I can’t make excuses for it. How do you tell someone you love that you feel nothing? You know you don’t truly feel that way, but when you are stuck in that fog it’s almost impossible to see beyond it. Besides, you’re pathetic and hideous, unintelligent and pointless – everyone you love will see that soon enough, it’s inevitable!

I don’t feel that way today. I didn’t yesterday either. Isn’t that GREAT?! Today I feel better. I laughed a lot yesterday and I felt warmth and happiness and loved. I was drawn to writing today because I can see that there is no shame in how I feel and that maybe some of you feel the same way. I hate that you do and want to squeeze you tight enough to juice out all your sadness. I also know that even if I had the strength or the plans and time to create an elaborate human juicer it wouldn’t work. It’s all about time. Time, maybe medication and/or therapy if that is the key for you. You’ll find your comfort like we all do with any illness.  

But what I’ve learnt from my recent bout of the blues is that is difficult on both sides of the depressed fence. When you feel deeply unhappy it’s hard to talk about. Sometimes you feel desperately that you want to tell someone but the words just cannot make their way out. Keep trying. Don’t assume they won’t know what to say, or that you’ll make them feel awkward, or that you will ruin a friendship. You won’t.

When you know someone you love is struggling; persevere. Don’t give up on them. Don’t give up when they snap at you, cry at you, and take things out on you. They don’t mean it and deep down you know that; because you know them. Don’t berate loved ones for not contacting you sooner – there are a million and one reasons we couldn’t – most commonly it’s a struggle to get out of bed let alone call a friend and weep openly down the phone. You don’t have to know ‘what to say’ either; there are no right or wrong answers.

 If someone reaches out to you because they are struggling, or maybe they don't but you know they want to, please don't give into awkwardness or the trap of not knowing what to say so saying nothing. Talk to them and let them talk to you. It's essential and can be the difference between life and death.

Keep well, K xox

Sick & Tired

There are a lot of things that can get on the nerves of a person with chronic illness. Many of them are those off the cuff comments made by outsiders, who perhaps speak with no malice intended, but still manage to rub us up the wrong way. One of these such comments was part of a conversation I had the other day regarding my sick absence from work in the past few years. (I should precursor this with a bit of background: my requiring time off work due to my condition has lessened dramatically both since my initial diagnosis, surgery and since I started my current treatment (wondrous Infliximab infusions).

Of course I still need time off for all the various appointments I need to attend and much of that I take from my own leave allocation to ward off the nagging fear of being made unemployed at any given moment. I say my need for sick leave has decreased because I’ve seen the stats. My stays in hospital are less and less, and although this treatment brings with it many offshoots causing other health problems, I am managing to ‘manage’. This makes me happy for several reasons: I am getting better and there is a visible record of this in black and white, I am making my employer happy as I am able to work more than I could, and I am no longer living under a cloud of terror at the prospect of being sacked.

So there you have it, the stats can’t be wrong. I am a much more visible employee albeit with an invisible illness and am happy about it. It may be hard to believe but the majority of chronically ill people don’t want to miss work. It makes us feel redundant and useless and can again serve to separate us from ‘normal’ people.

SO back to my original reason for this blog.

The other day someone told me how pleased they were that they hadn’t had a sick day in a whole year. My first thought was, ‘WONDERFUL! Amazing you haven’t felt ill in a whole 12months!’ Swiftly followed by an internal (I can only DREAM of achieving such a feat). I politely told this person I was really pleased for them (I genuinely am) and thought maybe we’d leave it at that – mainly because I could sense “And you?” was coming round the conversational corner at breakneck speed. Arrive it did and when I confided how many days absence I’d had in a 12month period she was AGHAST. Knowing already of my condition and various issues I have had in the past few years she was still astounded at the number of days I’ve been off. (Side note – it’s less than a month). I then swiftly tried to justify myself, saying things like “Oh you should have been around in 2011 I was off for about 5months after my op!” - Desperately trying to make up for my behaviour and show what a good girl I’ve been since. GOD KNOWS WHY.

Wait, I do – GUILT.

As mentioned previously we want to work. We want to be active and useful and ‘normal’. We try our hardest to do so. We are absolutely delighted to hear you are well, and have been well enough to attend work every day; but please don’t make us feel like shit because we haven’t. Encourage us instead. Gloating about your achievements is never cool – even less so when it makes us feel like failures. 

Remind us you’re glad we’re alive, because that’s definitely an achievement we can get on board with. 

Scar From The Madding Crowd

Here's something we could stop doing. It's simple, and instant, it doesn't require deep introspection or a profound change of belief system. It requires only a little thought and tact: 

Stop offering me sympathy for my scars. 

Now don't get me wrong, before I continue I don't wish you to eliminate ALL sympathy from your conversations with sick family and friends -  just the parts that imply we have something to be pitied for. Buy us flowers, chocolates or kittens after we've had surgery or a nasty procedure by all means! All of that is more than welcome; just don't reassure us we'll be fine 'despite' any new scars or visible changes to our bodies. 

When I first had my surgery I couldn't bear to look at my stomach for days, other than for quicker than required cleaning and maintenance purposes - I was repulsed and heartbroken. I couldn't accept I was going to be tarnished with a huge and unsightly scar for the rest of my life. No amount of Cocoa Butter or body scrub would remove this 'thing' I'd been left with. 

That was then. 

Once I began to heal and see what I was left with (post staples, scabbing and all the usual gruesome goings on), I saw that I had quite quickly realised this was my body now. That it really wasn't that bad because it served as a reminder of where my life was saved. That it was actually quite cool. A battle scar if you will. (Although I don't personally consider being knocked unconscious for several hours much of a battle; I like the sentiment nevertheless). 

My issue with people's outlook on my body is where they feel they have to offer me reassurance that I'm still attractive despite my scars. That it can be concealed and hidden if I want and that I don't have to be ashamed. I know all of that, and I'm not ashamed. I'm not ugly because of my scars or otherwise and I'm certainly not intending to hide away for the rest of my life. Quite the opposite.

How can we possibly begin to teach others that our scars are a beautiful part of who we are when we are met with a seemingly automatic negative response? Don't offer sympathy, offer compliments. I'm not disfigured or repellant, I'm merely physically altered. Changed a little.  How am I to learn to love myself when I'm led to believe my life-saving scar is unattractive? 

Something that serves as a remainder of a terrible time I came through with gusto is deemed to require sympathetic head tilts and 'aww never mind's?

How do I teach children (JK I don't have them) or cats that their 'blemishes' don't make them ugly, or less of a person? How do I explain to my friends who are about to undergo surgery that they won't be abhorrent to human eyes when they come out the other side? 

Different doesn't equal unattractive. Just because you have a flat unblemished 6 pack and I have a borderline wobbly and scarred stomach doesn't make me less attractive than you, it makes me different. It shows how unique our life experiences are. Nothing more nothing less. 

A once terrifying prospect, my scar now makes me feel strong and powerful. It reminds me of how hard I fought to recover after a horrendous time in my life and that I'm capable of doing the same again when the time comes. I don't need sympathy because I am confident in my own appearance - a scar or 5 doesn't make me any less of a woman, and if I live to 100 and have to endure a 100 more scar-inducing surgeries, the same rule will always apply.