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.

The Fault in our Scars

The latter part of last year was an introspective few months for me. With the help of some people who love me, I established I’ve spent a lot of my years on earth to date holding onto bitterness and anger over past events and the hand life has dealt me. I’ve spent a lot of time, no, wasted, a lot of time, blaming people/ things /happenings in life for my own misery. I’ve realised I’ve been neglecting to take full (or sometimes any) responsibility for my own actions. Although always unintentionally, relying on having a fail-safe(s) to blame for my own failings has been a pattern of behaviour uglier than a Donald Trump patchwork.

It may of course sound trite and pitiful, all this psychobabble. Especially when it’s coming from a 32 year old woman and not a stroppy teenager, but that’s ok, it’s just taken me a little longer to iron out some of my internal creases. Some people don’t ever look inwards. You would’ve thought I’d done my fair share of that over the years due to numerous colonoscopies; but this time I’m looking at my behaviours rather than my colon. (Attractive as it undoubtedly is).

I’m not trying to batter myself over the head with what I consider to be my failings either. It’s good, all this. It’s actually liberating. It feels good to finally free yourself from the shackles of bad habits, and that’s all this really is – bad habits I’ve fallen into and accepted as part of myself. We all do it; although to a lesser or a greater extent. Don’t get me wrong; I don’t feel that I’m a complete shambles of a woman. I’m not; I’m pretty smart, not troll-like hideous, fiercely independent and armed with a vast knowledge of both cats and David Bowie’s back catalogue. But like everyone I’m not perfect. (Whatever that might be).

Of course there is a point to this blog and not just an excuse to wax lyrical about myself and use this as some sort of forum for psychoanalysis. (God help me if it were…) I wanted to make the point that having a chronic illness may have caused you, or someone you love to fall off the responsibility wagon.

You may not have realised how much of your life is spent feeling angry and bitter. It just bubbles and seethes and occasionally boils over hurting yourself and the people you love. You’ll blame lack of progression in your career, education, relationships or all of the above on being ill. It’s hard not to when it can be so all-consuming. This may last a week, a few months, years or even a lifetime – if you let it.

I’ve tried not to blame Crohn’s for the things that have made me unhappy. But in the past I have. I’ve accused it of holding me back and stopping me doing the things/people that I love. The truth is it DOES hold me back – in small ways such as having to give up parts of my day over to hospital appointments and procedures. Having to give up parts of my internal organs to the surgical waste disposal. Being too ill to have FUN.  

But in order to have the happiest life outside of your disease you have to learn how to slot these changes into your day to day life and let go of some of the anger and frustration you feel. Accepting what you can control causes a domino effect which will only lead you down the yellow bowel road to a happier life.

When you stop yourself from achieving a goal, or fail at something you’ve attempted, be it small or large; stop a minute and consider all the issues that have lead you to this point. Is there anyone or anything to blame but yourself? Is ‘it’s my diseases’ fault’ what you really believe?

I catch myself now. I stop myself before I wind myself up into a Crohn’s VS Kath frenzy. It's cathartic; and calming. If saves my bowels from burning like the Sun due to unnecessary stress, aids happy relationships and stops unnecessary arguments.

When you take a moment to look inwardly it’s like a mirror is shone on others. You see how deeply apportioning blame over taking responsibility can affect lives. It becomes clear who is using the age old argument of ‘my life is so hard because of X & Y’.  Granted that was one of the more awful Coldplay albums but I’m over it now. I can’t continue to blame Coldplay for all of my problems in life, and neither should you.

It’s U2. It’s all U2’s fault. 

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.