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. 

Private Romancer

Let me tell you a story. It’s about a girl. (Let’s be honest, all the best stories are). Settle in, and if you are comfortable I’ll begin. Ok so this is the story of a girl, let’s call her Kathleen because that’s her name, who found herself at a bit of a crossroads. She was in love with a man but didn’t quite know it, she was afraid to hurt someone she did know she loved by admitting this – she was afraid to make the wrong choice and hurt people she loved. She chose love. She still chooses her love, every-day, 10 years later. She took a chance on someone and something and didn’t realise at the time that she was being brave. She is still being ‘brave’, 10 years later.

Isn’t that nice? Love is great eh?

Love aside, life at its core is about choices. And kittens of course. My ‘story’ is easily romanticised isn’t it? I left a man and an unhappy relationship for another, finding out I was in love with someone once a friend and letting myself be swept up in a beautiful blanket of adoration. In reality I just met someone else, ended a relationship and started a new one. It happens every day. People are hurt by other people and people fall in and out of love every day, isn’t that incredible? No not really, it’s human nature.

But my ‘story’ isn’t uncommon, it’s quite the opposite. As I’ve shown it’s easy for me to glamourize my love life for the sake of a few electronic thumbs up from abject strangers. It’s easy to do that and ignore the fact that the last 10 years have also been the hardest of my life.

I’ve been suffering from a chronic and incurable condition, I’ve been diagnosed with a million and one off-shoots of this and I’ve struggled with severe anxiety and depression.

I don’t mention this for sympathy – I mention this for clarification. To serve as a reminder that life is much more that what you allow to be seen. Everyone is dealing with something they would perhaps rather not talk about. That’s fine, and entirely their right. Private life should be just that, private. I talk about my illness a lot. But then you knew that. I don’t talk about my relationship a lot because my partner doesn’t write a blog, I do. I respect him and our life together and know that talking openly about my own health is my choice, not his.

The point I am trying to make is that life is about more than what you choose to tell the outside world. It’s important we take that into account when we judge others and decide on how best to advise someone on anything. We don’t know the full story. The minute I mention my disease I am continually met with a barrage of ‘you should try...’ or ‘if you just…’ or ‘well I have IBS...’ from people who know next to nothing about my life. I have an invisible illness and choose to keep it invisible a lot of the time – again MY choice. I talk about it here for me and hopefully for you, but it doesn’t consume me. It isn’t ME. I’m the girl in the story who fell in love with the man – I just have some defunct insides too.

Your story is yours and yours alone, what you choose to tell is up to you. However if you have a kitten I’ll require regular and in-depth updates attached to a PowerPoint presentation. 

Everything Is Beautiful (In It's Crohn Way)

Since I began writing about my condition back in 2010, I've gone through countless physical and mental changes. My outlook on my own mind and body has altered tenfold - sometimes for the better, and sometimes, well the less said about the worse the better. 
Right now I feel good, and maybe even content. My health is improving, my treatment is working, and although I seem to be kicked in the teeth every few days with colds and bugs and the ilk, I'm not in constant and unmanageable pain - which allows me to live a relatively 'normal' life. I've got loads of exciting things to look forward to in the coming months which are giving me purpose I've lacked for a while, and goals to aim for. I'm setting myself hoops to jump through and applauding myself for the little (and large) things I do achieve instead of berating myself for the things I don't.

Perhaps the most telling thing I've discovered in the years following my diagnosis however, is that doing the work on my mind has changed my opinion of my outer-casing too. Becoming mentally happier has made it harder to internally punish myself for putting on/losing weight for example. I've almost stopped worrying how I look; no that doesn't mean I've 'let myself go', but I've tried to concentrate on what the changes inside and outside of my body mean for my health - not merely my vanity. 

Of course, just because I feel better about my body, doesn't mean everyone else will necessarily follow suit. 

Over the years I've been accused of portraying an 'idealised view' of life with chronic illness, I've been maligned for complaining about steroid weight gain because I'm 'skinny', criticised for mentioning I've lost weight because 'well it's easy my body does it for me'. Amongst many other inane and insensitive comments.

It's easy, for the most part, to let this slide over me of course, mainly because I'm so skinny and svelte, built much like a slalom in fact; but the anger tends to rear it's head when I think of others who are perhaps struggling with their appearance due to the toll chronic illness takes on the body. Some people don't find comments like the above so easy to laugh off or tolerate. Some take them to heart and go insular. They stop talking about their illness through fear of judgement or mocking. They feel shame and embarrassment about their own skin and what lies beneath. 

So how to deal with this?

For me, I feel it's important to try to educate rather than take umbrage at insults or ignorance. I can take such an enlightened view you see, as I'm so slim I'm basically weight-less. 
When outsiders make mention of my weight/appearance/startling beauty/comment on what I should or shouldn't do to 'cure' my incurable condition, I begin by mentioning that my weight fluctuates as my illness and medication cause it to do so, and that although I very much appreciate you taking such an interest in my body, I have doctors and a lover to do just that, of which you are neither. 
When I can eat well, I do, and I don't make any apologies for that. I am happy when I am healthy, not 'skinny'. (and as a quick reminder: skinny has never been default for beauty).

Over the years the parts of my body i've hated have been in the hundreds (at least). As a teen I hated my 'flat' chest; as an adult I hated my 'big' bust. I've always disliked my 'big' nose, my 'pointy' chin, my 'squint' teeth, my 'uneven' hips, my 'chicken' legs, my 'knobbly knees', my 'massive' forehead, my 'kinky' hair, etc etc TO INFINITY. 
Then, PC (post-Crohn's) i hated my 'dry' skin, my 'falling out in clumps' hair, my 'bloated' tummy and my 'unsightly' scar. Do you see how everything is pre-cursed with an insult? Why do we do that? Why don't we ever enjoy our bodies?

I gave up hating every freckle on my body when it struck me that I was alive.

If I looked like [enter your own definition of ugly here] or [enter your own definition of beauty here], it didn't matter one iota. It mattered that my heart was beating and my lungs were breathing. It still matters.

I'll continue to talk openly and honestly about my struggle to accept something often impossible to accept because it helps me feel less alone, and because I want YOU to feel less alone. I don't ever want to feel singled out or vulnerable due to something that chose me to inhabit. My body just happens to be an unwitting vessel for an incurable illness: I have to accept that but I don't have to lie down to it. I have to maintain how I want to seen by myself and by others. 

So there you go; having a chronic illness makes me feel pretty ugly a lot of the time, but courage and beauty is more than skin deep. Don't listen to anyone implying you are somehow less of a person because of your disease; you are so, SO much more. 

  

S

I'm Crohnly Sleeping

A difficulty I find in explaining my condition to outsiders, is the mere idea that it doesn't 'go away'. I don't refer merely to the base fact of it being incurable - more the daily symptoms that plague sufferers on top of the disease itself. 

For me the worst of these is Fatigue. 

Fatigue is not 'tiredness'. It's an intense, overwhelming and chronic exhaustion that never leaves no matter how much sleep you get. 

I go to bed early, getting my 8 hours wherever I can, I try to take naps when I'm able; it's all fruitless. Of course there are things that can be done to help combat it; like vitamins, healthy diet, alleviating stress and B12 shots; but again for me none of it helps. It's hard then to explain this utter exhaustion to someone who has never felt it. 

Without a word of a lie, I genuinely feel like I need to go straight back to bed the minute I wake up. 

How do I explain that I am shattered when it's my day off and I've literally done no more than reach for a biscuit at regular intervals? All that follows is a stream of "You've got a cheek!" and "Listen to lazy bones here!" style retorts (repeat to fade). Or worse, I'm met with genuine irritation from the other party involved - as if I don't have a 'right' to be tired. 

I cannot (calmly) express how humiliating and shaming it is to be called 'lazy' due to something out with your control. 

Feeling constantly awful and exhausted is HARD WORK. So too is holding down a home and a full time job on top. If then I want to sit and do nothing for a few hours I'm not 'lazy'. Does the same apply to you? If you've worked all week and want to enjoy a lie-in or a long nap on the couch - are YOU lazy? 

I sometimes feel perhaps if I were hungover and lounging ("dying LOL!") on the couch all day it would garner more respect and even sympathy than wanting to take a break from being steamrollered by an incurable disease. 

Please don't get me wrong though, I don't want sympathy. I certainly don't demand respect for something thrust upon me either. 

Perhaps just a little understanding though? 

When I tell you I'm exhausted, I'm EX-HAUS-TED. Not because I've done a million and one things and need a lie down, but because I've done one thing: WAKE UP. That in itself is all it takes to floor me. 

You know that feeling you get when you're awakened too early and you can't quite focus or shake yourself into life and spend the rest of your day one step behind yourself? 

That's EVERYDAY. And to sound like a teen drama for a moment: it totally sucks.  

In the end it means we generally play things down, because it's embarrassing to feel 'different' sometimes, for fear of sounding like a broken record, or (and my biggest fear) for being thought of as a hypochondriac. 

So if you ask me how I am and I tell you I'm 'tired', that probably means I am one blink away from falling into a 10 year hibernation. If I tell you I'm 'fine' that means I'm definitely not but there's nothing you can do about it, and if I tell you I'm 'good' it means things are OK. I'm coping and you needn't worry. Just don't applaud me for feeling 'better' too soon because I'm not - but at least I'm AWAKE and that's all you can ask for now.