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

16 Things to Eliminate in 2016

1.       Ignoring or minimising health issues.

Let’s start with a biggie. This behaviour is not smart. If you see/feel a problem, talk about it. It never does any good keeping things in; emotionally or physically. What if the things you are ‘keeping in’ are slowly killing you? Isn’t it better to know what you are dealing with rather than spend your days living in a constant state of anxiousness and anxiety? (The answer is yes there by the way. Just in case this very sentence is making you anxious). If in doubt, get checked out.

2.       Doing diets/workouts/joining gyms if you don't want to.

It’s January! You’re a big festive fatty! You better lose those pounds fatso! And what better time than the start of a new year! That’s right, your purse is barren, and you’re heading back to work after a blissful indulgent period of time off, what better next step to take then silently crying as you mount a sweaty treadmill? If you don’t want to a join a gym – don’t. Yes, exercise is great, and necessary but find your own way – you don’t have to force yourself to join a spin class or kale eating contest if the thought repulses you.

3.       You don’t have to ‘classify’ yourself.

Personally, in living with a chronic illness, I prefer not to be referred to as a ‘crohnie’ or a ‘spoonie’. I don’t like the idea of feeling like I’m separate from the rest of the ‘healthy’ world; in some sort of bizarre sickly cult. Of course I hold no ill will against those who take comfort in these terms, it makes many feel they are ‘in it together’ – however for me it strips identity. I don’t ever want to be determined by my disease.  

4.       Getting a mountain of ‘Likes’.

We are but tiny specks on this massive planet, inevitably floating into oblivion, what does it matter how many ‘likes’ you get on Facebook/Instagram/your social media of choice? Give up seeking approval for every thought that enters your pretty head and try putting that energy into more productive activities. Did you notice I called you pretty there? LIKE.

5.       Things you didn’t achieve.

Look, unless you are a Time Lord you can’t go back in time, so stop mentally torturing yourself over what you haven’t accomplished in the past 12months/your life. Yes, a new year is ‘just another day’ – but it’s also an opportunity to clear away the cobwebs and put the past to bed. So do just that and focus on looking to the future and what you want to achieve.

6.       Seeking validation from others.

An inspirational mock-up Marilyn Monroe/Minion quote once said ‘The only opinion that matters is your own’. As with the previous advice of ceasing ‘like’-seeking, try to give up seeking approval from others. The more you aim for it the more addictive it becomes, and therefore the harder to give up. You have to find comfort in your own opinion – because you’ll never please everyone, but mainly because your opinion matters.

7.       Tolerating trolls.

The scourge of the internet – little boys/girls playing with their toys and getting so hot and bothered over a complete strangers comments they are left with no option but to call them names hidden behind their keyboard – the internet equivalent of pulling a schoolgirls pigtails.  It’s hard to know what the best way of dealing with these trolls is; do we pull them out of their caves into the light for the whole world to see or simply ignore them and eventually they’ll go away? I prefer to pay no attention to them (sometimes it’s easier said than done) – when they have no one to bat their nasty ball back, the game is lost.

8.       Wearing heels every day.

Nope. Have you ever seen a bunion?

9.       Desiring the ‘perfect’ body.

Such a thing doesn’t exist. So really you’re pinning all your hopes on the unachievable. ‘Perfect’ is different things to different people – don’t change yourself in order to attain a fruitless goal that will leave you miserable. Albeit attractively so.

10.   Feeling obligated to make plans.

You think; ‘I’d rather die than go to your baby shower/housewarming/all night rave/brunch date in artisan restaurant where they serve your steak on a shovel’. You say; ‘Oh absolutely! I can’t think of anything better! I wouldn’t miss it!’ Stop doing that. Just don’t go.

11.   Selfie shaming.

If you want to post a million and one selfies then go for it. You have a great pout! Just know that we all love you and want to help you deal with your insecurities, if that involves you selfie-ing yourself to ecstasy for a while that’s ok. Just don’t mock others for the same thing.

12.   Making a mountain out of Valentine's Day.

Why are you succumbing to the pressure of every advert/shop window in the country? If you want to do something romantic then do it – you don’t need a ‘day’ to show someone you care. If they forget that ‘special day’ who cares? Make him/her a cup of tea! Run them a bath! Throw a toaster in there, they’ll love it!

13.   Comparing your life to others. 

Stop it.

14.   Losing the What If’s

Move on and look to the present, and the future. It’s pointless and redundant trying to replay what you feel are missteps in your past, you’ll never know how things may have worked out if you’d taken the other sliding door and it frankly makes no difference on the here and now.

15.   Getting back ‘out there’. 

Yuck. The best moments normally happen by accident. Unplanned. Don’t feel you have to follow some imagined rule book in order to find happiness.

16.    People who are toxic for you.

You don’t need people in your life who make you unhappy, stressed, think less of yourself. It’s just not necessary. Stick like glue to the ones who show you care, make you feel happy and loved. Start the year as you mean to go on: feeling GOOD.

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.

MY HAIR HURTS.

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. 

Body Balks

‘Body-shaming’ is big news these-days. It’s a long-standing issue of course, dating back to the days when we used leaves as underwear no doubt. Although if you come from my local area that was only last month. Men and women alike have always been portrayed in certain ways in papers, magazines, on TV and on film. We are supposed to look flawless 24/7. If not we are doing something/everything wrong. We are supposed to preen/starve/paint ourselves to fit the image we see all over the media.

It’s not REAL. It’s not possible.

The world is filled with vanity, where beauty and perfection are portrayed to be everything. Thankfully nowadays more and more women (and men) are speaking out on the incorrect ways they are depicted in the media. Pleasant news, as if we were to attempt to keep up with them it would be a full time (and decidedly un-fulfilling) job. One made harder still when you have a disease like Crohn's.

IBD or any chronic illness, and can change your entire body (and attitude towards it) in a mere matter of hours. When I'm in the midst of a flare-up the disease affects my hair (making it dry, thin and fall out in clumps), skin (dry and sore), makes me bloat to beach ball proportions, gives me hot flushes, makes my face chalk white and makes my body ache all over. You can imagine why it’s pretty difficult to feel confident and attractive when all of that and more, is going down.

Women in particular, have beauty shoved down their pretty little throats everywhere they turn. Sex and supposed 'perfection' sell everything; a gorgeous model in a slinky dress will be used to sell anything from a new Audi to a tube of Anusol.  And we are designed to lap it up. Well of course we are; these women are far more beautiful than us, so logically if we own that product, we too can be just as beautiful. It makes perfect sense! If you choose to ignore the airbrushing, and make-up artists ad hairdressers and personal trainers who all help make this perceived perfection possible. Despite knowledge of all of this, we still continue to put so much pressure on ourselves to look, dress, and act a certain way in order to feel accepted. Usually by people we don't even like.

None of it matters. In 50 years I very much doubt how good I looked in that Instagram filter will matter to me too much. (Mainly because I’ll be dead long before then; I am Scottish after all). But also because my health, and my self-esteem are what matter. I want to be known for being confident enough to express myself, helping those who are less fortunate than me and complimenting a beautiful woman rather than berating and secretly envying her.

In living with this disease I know I will never be conventionally 'perfect'; and that’s FINE, because such a thing doesn’t exist. But I am unique; for example I have a jazzy scar down the front of my stomach; leftover as a memento from where an amazing woman (I'm sure with the help of some excellent male nurses...) saved my life and removed a really, really ugly bit of me.

That can only be a beautiful thing.

Write On, Write Aff

Here in Scotland a common phrase one may use when they are perhaps hungover, ill, or just generally looking an absolute mess, would be; “Whit a total write aff” 

[translation: ‘What a complete write off’: not currently fit for purpose]

In living with chronic illness you will find yourself feeling and looking like a ‘write aff’ more often than most. I've had a good few 'write-off' days recently. Those days where you find, thanks to illness, all your plans are out the window whether you like it or not. You are floored. Work is a mammoth undertaking; in fact much more than turning over in bed is nigh on impossible. Plans made are cancelled, friends and family are let-down and housework builds up around you faster than cat hair on a silk blouse. (Speaking from experience there obvs).

On my recent series of write-off days, I missed a day of work and spent around 3 full days in bed. Today though…I got out of bed! And even showered! I'll wait for the applause to die down then I'll continue. 

Celebrating small victories is a common aside in living with chronic illness. It may not seem much to praise ourselves for, but it’s important, as we spend so much of our time internally beating ourselves up for what we are missing out on or unable to do for ourselves and others. It’s incredibly frustrating being ill. So, SO many wasted hours. The guilt at missed work, the annoyance at letting those you love down, and the pain and misery experienced when riding the wave of debilitating symptoms.

What I've come to realise though, is that self-care is very important. No, I'm certainly not saying that knowing how vital it is to look after number 1 makes the guilt of missed work or cancelled plans any easier, because it doesn't. Mores the pity. However it’s the sensible thing to do. Always the most boring I know. 

The more in tune you become with your own body the more you know when something is wrong, and the more you know when it’s time to take a step back and let yourself rest. If you manage a little work, or complete a menial task then well done. Just don’t break yourself in two trying if you don’t have  to. 

Learning to take the time you need to recuperate will always be more important than doing the dishes or hoovering the carpet. Besides I've been "unable" to lift the hoover since my last operation, and I intend to ride that particular wave for at least another 12 months. As far as my other half is concerned, hoovering is a ‘write-aff’ ;)  

Cistern of Mercy

Whilst having a cupboard clear out, amongst old gig tickets from cringe-worthy bands I pretended to like to impress boys, countless, countless love letters, and 20odd years’ worth of birthday cards, I found my old diaries. I’ve kept a diary since I was around 14 years old. It’s been a confidante through my teens, a comfort through my twenties and a cause of major hilarity and heartbreak years later.

At the end of a year I tend to hide my diary away. This tradition probably stems from the happiness at the closure of a perhaps below par 12months, and the nervous excitement of starting a new one. But today as I came across my own past written in scrawled biro (with notable devotion given to CAPS LOCK), I lingered on 2010, and the year in which I learnt I first had Arthritis, followed swiftly by Crohn’s Disease.

As I fingered through ‘myself’, err my words that is; I found myself crying and cringing in almost equal measure.  The first few months of the year were spent in compete denial there was anything wrong with me, despite all the evidence pointing otherwise. As I noted hospital visits, pain and toilet peculiarities, it was all done with a matter-of-fact attitude that after a while whatever it was would be fine.

‘Fine’ features a lot in 2010.

Reading all of this back now makes me feel almost embarrassed for my 26 year old self. She had NO IDEA what was to come, and no idea how to cope with any of it.

What struck me most in the pre-Crohn’s diagnosis days was how tired I was all the time. I don’t particularly remember that part when I look back now, (although that’s understandable as there was a lot more gruesome stuff to come), but I think it’s important to focus on it, as now I realise what a clear sign exhaustion is that something is awry. I feel quite the fool reading of my utter naivety now that I’m decidedly more versed in the workings of my own body, but back then I was a dunce in the deduction of illness. 

Now I have an encyclopaedic knowledge of my own back passage of course, and not many 25 year olds' can be expected to have that, unless they are in extraordinarily specific and somewhat questionable professions…so I won’t beat myself up too much.

Anyway, one quote from my diary, which particularly upset me, and struck a chord even today, was in relation to my…relationship. I spoke to my leather-bound confidante on my permanent exhaustion and nausea, and how it left me cold in getting amorous with my beloved:

‘I couldn’t possibly try to explain to him why I don’t want to be with him and I think that’s what’s going to end up being the death of us, just not being able to explain the way I feel about things’

This made me cry a little because it reminded me how deeply the disease was affecting every aspect of my life, even before it had even been officially named. Already I was unable to communicate my feelings to the man I loved because I was incapable of communicating them to myself. I was completely and utterly alone. Trapped in my own failing body.

I feel sad for my former self because I want to scream at her to go back to the hospital! See the doctor! Don’t listen to that colleague! But as we haven’t quite mastered time travel yet, I just have to make do with saying the same to any of you who need to hear it.

It wasn’t ‘the death of us’ by the way, nearly the death of me, but I thankfully dodged that particular bullet too. I suppose the reason I’m relaying this afternoon of musings from my memoirs; to remind you that it’s important to trust your gut. (Even if it’s your gut, that’s letting you down). If you think something is wrong then push to get it clarified. Talk to the people you love – if you don’t understand what’s happening to you and can’t find the words then just tell them that.

If all else fails, write it down. Just don’t wait 5years to read it again. 

Crack To Life

I don't have a single clue what I'm doing.

That's OK.

I don't have to.

I’m 32, and I don’t have a single clue what I’m doing!

Don’t worry [MUM], that doesn't mean I don't have ambitions, and goals in my future that I want to achieve, because I really do. I just don't have it all worked out just yet.

Not quite. Does anyone? I’m not sure.

If Facebook posts and stop-and-chats with old school friends are anything to go by, most people seem to have life all figured out. It’s all going swimmingly. I just don’t buy it.

For some people I’m sure life IS sweet. They are in the job they want, have a happy relationship, and maybe some perfect kids/cats. That’s great and I’m very happy for you.  

The truth is, for young women (and I’m sure men: I just don’t have that same experience to share), there is a tremendous amount of pressure on us to have ‘it’ all worked out pretty early. Despite being endlessly told not to grow up too fast, not rush into anything and enjoy our youth because it's the 'best time of our lives'; everything else tells us the exact opposite.

Decide what you want to do with the rest of your life before you leave school.

You're 16 you should know what career you want by now, come on!

Get a further education.

Get that job.

Get married, have those 2.4 children.

Get a mortgage.

Get a pension.

Write your will.

Die.

WOAHHHHH there. Can we just take a minute to ENJOY life? And see where it takes us? When I approached turning 30 I did so with not so much trepidation, more like abject terror. I focused solely on what I hadn't achieved. The rules of relationships and expectations put on me by every book, film, magazine article around me. I hadn't found my dream job, my perfect home, I wasn't married and I didn't have children. What had I achieved then?

That’s right: Nothing.

So instead of wallowing on my apparent failures I decided to forget about it and have a big party where we all dressed up as 80’s icons instead. (That was definitely one of my better and more glitter-inducing ideas).

I got sick though. Not that night. Although I did mix my drinks and eat faaaaar too many potato wedges. I became ill in my mid-twenties. It suddenly didn’t matter what job I had, or what colour of paint I’d buy for the lounge; it mattered that I stay alive long enough to wallow in the joy of choosing paint colours.

Illness, no matter how seemingly insignificant to those on the outside, can be genuinely life-changing. It can be all but impossible to simply fall back into old routines or old ways of thinking, because for you everything has changed. That can be very hard for those around you to understand, let alone accept.

That’s OK too! Don’t push them to, and more importantly don’t push yourself. You are doing the best you can so just keep at it. Much like our defunct bowels things will work themselves out eventually. Just be patient. A patient, patient if you will.

After all, your [insert current decade of age here] are the best time of your life. 

Crohn-er of a Lonely Heart

Sometimes I can't believe how much I love cats. I feel a painful pang in my chest at the mere idea that some cats might be lonely in the world. That some might have no one to give them treats while we watch CSI repeats together. No one to feed them half of their dinner then go hungry. I can't bear it. I can't even see those adverts about cats in need for my uncontrollable sobs. I love them.

But what does all this cat chat have to do with bowel disease I hear you cry. And well you may as I've gotten so sidetracked talking about wee cats that I'm not sure I remember myself... Ah yes. Loneliness.

The reality in living with a chronic illness is that there really is no amount of sugar-coating that can make the feelings of isolation easier to stomach. It can be hard to go through this alone. Relentless and utterly exhausting. Even if you are surrounded by loved ones it can still strike. They don't go through what you go through so essentially you are still 'alone'.

Chronic illness can change you: make you afraid and anxious, and too nervous to ask for help. But it doesn’t always have to change you for the worse – it can open your eyes to what you truly want out of life. Having the prospect of life taken from you encourages you to see things with a clarity most people aren’t afforded. You are lucky! You realise you aren’t shackled to those people who bring you down, or to a job you hate; and that it’s only you who can make the changes in your life to make it more than just ‘bearable’.

Being ill can be (and often is) your first thought when you wake and your last thought when you go to sleep. Not very romantic is it? It can overshadow anything seemingly good in your life, so it really is vital you both take the time you need to heal, and then try to live your life to its absolute fullest when you are well enough to do so. Otherwise what is the alternative? Giving yourself over to misery and loneliness? That’s not for me thank-you very much.

Reach out and ask for a friend when you need one. I for one have a lot of life still to live, and a love to give and I don’t intend to hold back. There are approximately 600 million cats in the world and I’ve only got a few decades worth of petting left in me. Time really is of the essence.

Crohn Star

I feel great today. I feel ‘well’. And I’m not even being sarcastic.

I’ve had a rough few days; loaded with the cold and pestered by migraines and last night a spontaneous chicken korma got the better of me, leaving my stomach swollen to the size of a heavily pregnant, but surprisingly alluring, elephant.

Physically I’m still utterly exhausted. Constantly blowing my nose, coughing up my lungs, a kidney and a lasagne I ate in 1992, but I feel better.

In the past year I’ve been quite badly affected by anxiety and depression. I didn’t realise any of this until it was pointed out to me by people who are medically trained/have half a brain cell. It’s never been something I’d considered in the early days of my illness; that my head would misfire in the same way as my body does. But it happens. It happened to me. It’s happening to me.

For a while now, and much to my own chagrin, I’ve hated my body. I’ve tried to pretend it doesn’t matter to me that I’m scarred and bloated, that my skin is porcelain and speckled in syringe marks, but it does matter. Because although I don’t care if YOU don’t like it – I care that I don’t. It worries me when I begin to disgust myself, because it means my disease is winning.

I’m generally pretty positive, and try to maintain a positive outlook on my illness (and my appearance), but being diagnosed with depression made me sink lower into self-hatred. I felt worthless and pointless. I didn’t care about myself. I’d past the point of being pro-active and slipped into a version of browbeaten acceptance. Everything I’d written, about how to live despite your illness, seemed embarrassingly hypocritical – I wasn’t doing that so what gave me the right to profess the same to you?

So today I’m enjoying the fact that those feelings are at bay. I feel happy and confident and attractive. I feel loved and valued. And I value myself. I’m a few months into my anti-depression medication and a few months into my Infliximab treatment. I don’t know if I still feel ‘depressed’ – I suppose I do from time to time, as many of us do. But my treatment is working and my mood is lifting.

I don’t feel hopeless I feel hopeful.

I feel positive about the future and happy to have such incredible support, tangible and otherwise.  I hope you all feel great today too. If you don’t; you will. Remember, like eye-patch aficionado Gabrielle once said, ‘Dreams can come true’, and I know that’s accurate because Jon Hamm is now single.  

Holding Back The Rears

When I tell you I like modern art, why do you tell me you hate it? Why do you tell me you don’t understand it? That it’s pointless? Or that you think it’s all commercialised; not like the old days, and that these youngsters can’t ‘draw’ or paint, and that’s not art.

Why is our first reaction to take an opposing view to the joy in others’ lives rather than learn about it?  

I must admit before I properly begin, that I am not excusing myself from this generalisation; I am just as guilty of closing down in an instant when someone tries to explain an equation to me or make me complete a sum. Maths and numbers have always terrified me and as a child I found solace elsewhere, in a book or a sketch pad, as an adult my safety net is in simply stating my disinterest. Bluntly.  

This strange habit of bashing others views simply because we don’t agree with them, or merely fully understand them, spans across all areas of life. From the importance of talking political standpoints, to the mundane of disagreeing on giving a film five stars out of five. Dirty Dancing is a solid FYI. No arguments.

The same habit occurs regularly when the subject of illness rears its head. Our first reaction is almost always to either head-tilt in faux sympathy or instantly compare and contrast with your ‘brother/mother/sister/greatgreatgreat grandmother who had that…’.

Why not ask us about it? Ask me about my Crohn’s. Ask me how I am and what it entails. Why not? What’s the worst that could happen? I’m not going to spontaneously rage-combust, or punch you, or direct an an alien to burst out of my stomach if you say the wrong thing. Although how cool would that be if I could?! Dinner parties would suddenly become more interesting. And messier. Small talk would be eliminated with a swift lift of my crop-top.   

Don’t tell me how I should be feeling based on your limited knowledge, or compare my symptoms to your distant relative/cat/someone you saw once on Casualty; listen and maybe learn a little more than you think you already (think) you know. If you have a chronic illness you pretty quickly become an expert on your own body. Who better to teach you the ways of the colon than someone who’s own nether regions 75% of the Gastro ward staff have had unadulterated access to? That’s right, no one.

We don’t have to agree on everything, (the world would be an incredibly dull place if we did), but we do have to try and be respectful of one another and allow a little room for information to be shared.

However, if you disagree with me that The Name of The Game is the greatest ABBA song of ALL TIME I will fight you to the death. 

Crack to the Future

In the early days of my illness, (and BOY OH BOY does that seem like a lifetime ago now); the future wasn’t something I really considered.

If, and when I ever did, it was almost always with negativity and a justly hopeless outlook. I’d focus solely on what I wouldn’t be able to do, what I would be forced to miss out on, and how awful living with the ‘new’ me would be for my loved ones and I. I couldn’t think beyond pain and medication. I couldn’t and wouldn’t see anything past whatever horrible procedures and anal intrusions I’d have to face on an almost daily basis. And that was just my private life! HAHAHAHA! LOL! BOOM! ETC :'( 

I was blinded by nausea, pain and misery. I couldn’t even begin to imagine how I’d be able to piece my life back together with this newly diseased stranger along for the ride. I felt as though I’d changed beyond all recognition and was frustrated that everyone around me couldn’t see that I was suddenly a different person.

I felt ‘altered’.

I was grumpy, irritable and I’m pretty sure a Grade A pain in the neck to be around. Forcing myself to pretend otherwise just led to more of an inner rage that seemed to burn away inside worse than my intestines after chili sauce.

That was over 6 years ago now, when I had decidedly more diseased insides, and definitely less internal organs. Since my diagnosis I’ve honestly lost count of the amount of times men I’ve only just met have inserted intrusive instruments inside me. A phrase I never expected to say unless I’d made the inevitable move from art school into sex-work. It’s on my CV now.

I’ve learnt more about the inner workings of my body than I’d likely ever have known otherwise. I’ve realised my capacity for empathy towards others is huge and my tolerance for hypochondria is MINISCULE. I’ve also appreciated that time genuinely IS a great healer. It allows for grieving, adapting and eventual moving on. Time passes and what was once the most horrendous thing ever to happen to you becomes one you can live with. You become less self-absorbed and realise that having a disease isn’t the most important thing in the world. Let’s face it now Jon Hamm is single that trumps everything.

For those of you who find yourselves in the position of having been recently diagnosed, please remember that although it may feel like it, your life isn’t over. It’s just been altered a little. OK, a lot.

It’s tough and it’s going to be really hard to maintain some semblance of a positive attitude. But do bear in mind that to date there is nothing in your life you haven’t overcome. You will deal with this too. You will.

LIKE A BOSS. Albeit one with shares in wet wipes and a grumbly tummy in board meetings. 

Hips Don't Lie

The other day, when trying on a series of potential outfits for a night out, I looked in the mirror and did a little twirl. I felt good. I looked good. At least for approximately a tenth of a second. My confidence in my own appearance was then abruptly bombarded with a rapid-fire series of hard 'truths'. Let me quickly run through just a few of those thoughts to give you an idea of what it's like for a woman looking at herself in a pretty dress; 

- Jesus look at your hips one is higher than the other
- Your whole body is squint how is that possible?
- When did your hips get that weird shape? How do we change that?
- Your stomach is sticking out again. GREAT.
- Is that bloat or actual fat? PIG.
- This dress is hanging all wrong. 
- Muffin top ALERT.
- Boobs are squint. 
- Four boobs and back fat.
- Your legs are too skinny you look like you'll topple over. 
- Too much cleavage you'll look loose
- Look at your daft face. 
- ARE YOU INSANE TO EVEN CONSIDER GOING OUT IN PUBLIC IN THIS?
- GET THAT DRESS OFF IMMEDIATELY. BURN IT.

Fun eh?! There's just a snippet of just some of the nastiness that flew around my head in almost the same moment I considered myself vaguely attractive. I instantly felt despondent and resigned myself to wearing a bin bag with a bit of rope tied around the middle instead of ever considering a dress again. But not pulled too tight obviously; I'd only accentuate those lumpy bits. Actually sod it I'll just tie the rope round my neck and be done with it. I'm already in a bin bag so my gargantuan body would be relatively easy to dispose of. 

1 Year Post-Op...

Anyway, a few days passed and I was blessed to receive some random abuse online for "portraying an idealised view" of living with chronic illness. I was advised by this complete stranger that I'm "skinny" and needn't worry about my weight because my "disease does it" for me. 

I instantly felt the confidence I'd lost in front of the mirror return with a vengeance.

I firstly felt angry though, because those comments reminded me that there are incredibly ignorant and rude people in the world who want to bring nothing but misery to strangers. STRANGERS. How utterly inane. It reverted me back to childhood and learning that when a boy is mean to you and pulls your ponytail it's because he really just wants to be your friend/girlfriend and doesn't know how to communicate those feelings yet. Online Neanderthals who bully and insult women by tapping nonsensical rubbish are nothing but idiotic little boys who have no idea who to approach a human being with anything other than bile and ingrained and incomprehensible hatred. 

I don't understand it and can't (and won't) begin to try.

But I do think it's important not to ignore it. I responded to this particular prematurely ejaculated spurt of drivel, by posting a picture of my own "skinny" body and all it's imagined flaws. Not because I wanted to justify myself, but because I couldn't bear the thought of young, vulnerable women being subjected to cruelty simply because they have the courage to enjoy their lives, and love their bodies. 

Have you any idea how heartbreaking it is when you are told you have an incurable illness? Imagine then, that same horror but as a child, or a blossoming young woman. It's difficult enough growing up and being told everything about your body is wrong, without that torture being compounded by an illness that will change your body beyond perhaps all recognition. 


Nobody is perfect; we all say hurtful things about one another. But no BODY is perfect either: why should we strive for 'perfection' when everyone has an individual idea of what that is? How stupid! 
I don't want a perfect body because I haven't got the first clue what that might entail. I just want to be happy. If that means I eat a cake or 5 then who the hell cares? I can't often eat and enjoy food as I'm generally in excruciating pain, vomiting or passing everything but my colon into the bathroom porcelain, so when I have the opportunity to get pleasure from food, I grab it like online trolls grab their penises when Pamela Anderson runs across the beach in Baywatch. (Or whatever kind of woman they consider to be 'perfect'). I don't know what that means, and neither do they because I'd wager the only breast they've encountered in life is their mothers and or a fried chicken one. 

But I digress. My point remains; women, and humans in general, are individuals and we all find beauty in different things. Isn't that amazing? Imagine everyone liking the same thing? How BORING. I'm not saying I'm now 100% comfortable with my own body, but my post-mirror reflection has taught me that it doesn't matter. I don't have to destroy my own confidence; there are always people out there wiling to help out with that one! 
Loving our own bodies despite what strangers/ doctors/ anyone else with a pulse may say is a vital starting place for adapting to any form of illness, and really any form of life. 

We all need to learn to be our own cheerleaders. 
If that's too difficult a place to start then give me a call. I've been told I have great Pom Poms.  

4 years Post-Op, 10 mins into toilet-centered mid-life crisis.