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. 

The Woeful Network

I think I first realised I was hooked on social media, when I woke up one morning and looked at my beloved of over a decade, lying peacefully (a rarity) beside me. He looked like the love-interest does in films, handsome, sleepy and all covered in stubble. Eyes perfectly closed and forehead not even doing that frowny-thing that foreheads often do when deep in sleep. He was almost smiling in his slumber; a shrewd curl of the lip that looked almost mischievous. In hindsight that was probably just gas.

Anyway, I glanced at this image of my beloved and took a snapshot in my minds-eye. Then, almost instantly, my hand darted to my phone. My phone situated under my pillow. In an almost panic like state I couldn’t find it. I rummaged in the sheets, clambered across the bed and emptied out my pillow case like a maniac.

Then I saw it light up - it was under his head.

What a dilemma. Did I wake my sleeping boyfriend simply to satisfy my curiosity? Yes, yes I did. Because I wasn’t just being nosey, that light might have heralded a text from my Mum to say my Dad had fallen down the stairs. Or I might have missed my alarm and I’m now late for work. Or perhaps I’d received an email stating I’d won the lottery that I’d forgotten to play. All of these excuses and a million or so more darted through my head in order to justify my utter desperation to get a hold of my phone.

When I’d manoeuvred my way under my sleeping partners cranium (which is no easy feat let me tell you) to procure my phone, I proceeded to check for texts /emails/ Facebook/ Twitter updates at an alarming rate. I quickly established the reason for the phone having lit up was due to me having received a message about unclaimed PPI. An instant DELETER, and a shameful waste of effort on my part, which could have resulted in the waking-up of an understandably grumpy man before his alarm.

So what was this obsession with exhausting all outlets for news, gossip and contact with the human race before I’d barely awoken?

Well I’d say it started when I became ill.

I was spending protracted periods of time in hospital and my phone was often my only outlet for human contact; and a welcome distraction from the misery and fear around me. I was often admitted without having time to plan ahead, and would be there for hours or even days before anyone could gift me with their face-to-face company, biscuits or magazines. So my phone became my mini-companion. My reference point for all the scary stuff I was facing, and my link to the outside world. Yes, I am well aware how unbearably SAD and UNCOOL that all sounds but then I’ve never been ‘cool’. Unless you count that time I had hypothermia? See, even that joke was painfully un-cool.   

The truth is, social media, and all the devices we use to access that world, can be invaluable to those with chronic illness. We need to feel part of the outside world, even when we physically can’t be. We want to maintain our relationships and keep up to date with the entire goings on around us (however mundane), because we already feel like outcasts a lot of the time. Time slows down when you become ill, (not literally of course, I’m not an idiot), but life seems to speed on around us and we often feel isolated and behind. Keeping in regular contact even from a far, can be vital for our mental well-being.

Now I am less preoccupied with my mobile telecommunications device. I still get in a mild panic if I misplace it, but that’s mainly because it costs a lot of money and has my reminders to buy Nutella on it. But I still feel a comfort having it with me. It’s a safe place. It has easy access to all my friends and family. It allows me to carry all my favourite people with me in my pocket. It has all my call-in-a-crisis numbers in it and my emergency contact details for when I inevitably become ill again. It’s a reassurance now rather than a compulsion. Something we all need when we are professionally sick.

Plus did you know you can Google my blog and/or pictures of kittens in bowties anytime?! DAY OR NIGHT! The internet really is an INCREDIBLE PLACE. 

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. 

We Care A Lot

I don’t have a ‘carer’ as such. Not in the traditional sense anyway.

Many of us do. Many of us are unable to work, unable to dress ourselves, unable to ‘be’ without the help of another.

I have a full time job, and am physically fit and healthy enough (the majority of the time) to do pretty much everything for myself. I’m very lucky. I still have a chronic illness though. So at times I need to be cared for. Whether I like it or not, and I usually don’t like it one iota. 

I value my independence massively and when I am too unwell to do even the most basic of tasks and am forced to rely on people around me to pick up my slack, it grates. Big time.

My own ‘carers’ are wide and varied. 

My friends, my family, my love. 

They are self-appointed in this role, and like the superheroes they are they simply don their capes and fly into action whenever they are required. Thankfully they only wear their pants outside their tights indoors and for my own personal LOL’s. This care they offer me comes in what they do for me, both physically and mentally. They help me walk when I falter through pain, they hold my hair back when I’m sick, they make me eat when I don’t want to, they make me laugh when I think I never will, and they remind me life is worth living when I can’t see it for myself. They do all of this with such precision and ninja-like stealth that I’m sometimes sure there is some sort of co-ordination going on behind the scenes.

It’s often such a whirlwind from me being well to being the polar opposite that neither of us really notices we have fallen into the roles of patient and carer. But we do. It seems it’s all effortless on their part. We know it’s far from it.

They make me feel that I am worthy of love and care and that my illness is never a burden, although at my lowest ebb I usually feel like that excess baggage you have to pay over the odds just to get on the plane with you when you didn't really want to bring it in the first place or even go on this stupid holiday I don't know why we cant just go to the caravan its such a waste of money and the waiiiiiiting at the airport don't even get me started…OH MY GOD….

Caring for someone else isn’t easy. It’s exhausting, and a job that generally goes unappreciated or even unnoticed. That isn’t because we don’t appreciate you, or don’t notice what you do; it’s just that it’s normally after the event that we begin to realise what you’ve been doing for us. 

We are ill and miserable and require ‘care’ in the moment – we are generally too concerned with managing pain and sleeping and drifting into drug-induced oblivion to thank you for all you do.

So here I am, thanking you for all you do.  

We appreciate you! Please know that! 

I know we are difficult, and tiring and absolute NIGHTMARES from time to time, but we love you and are always incredibly grateful for your time and attention.  We care for you too. Always. Pants inside or outside your tights, you are my heroes. 

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.