Friday, 19 August 2016

Stress This House

Not sure if I mentioned it recently, if it all, I mean I have been pretty quiet about the whole thing tbh, but I've written a book on life with Crohn's Disease. With writing a book you, of course, open yourself up to criticism and judgement. That’s wholly understandable; I’m expecting people to take the time to read something I’ve written and maybe even purchase it with some of their, no doubt hard-earned cash, so I am certainly open to hearing opinions on it.

But within writing circles pretension runs rife. I’ve been made to feel that I’m not a ‘real’ writer in several areas; and I’ve gone along with that because I don’t truly feel like one either. Even though I’ve had a book published it still feels as though I’ll be ‘found out’ eventually and I’ll have to admit that yes I’m an idiot who just got lucky, LOLZ sorry!

But my own insecurities aside, and I hate to break it to anyone criticising me, but I’ve written a book on my experience of bowel disease; I’m not trying to be the voice of a generation or pen The Next Great British Novel.

This same feeling of insecurity permeates all aspects of my life when I’m feeling low. I’m not a good enough writer to be taken seriously, I’m not a good enough partner to the man I love and eventually he’ll see it too, I’m not ‘sick enough’ to talk about it with any level of knowledge, etc ETC to infinity.

These feelings all began when I got sick. Because with long-term sickness often comes anxiety and depression. Not for everyone of course, but for more of us than I’d care to wager.

I’ve always been self-deprecating; it’s what helped me avoid being bullied in high school (I had no boobs, a 10y/o boy’s haircut and liked cats more than boys). It’s what got me tips as a waitress and barmaid. It’s what help bagged me a beau. Laughing at myself is probably a safety net – it gets it out of the way before anyone else does. Not that I truly believe they will; but it doesn’t matter what I truly believe, because the minute I think those thoughts they take over. Approximately 4565775675 different scenarios play over in my head then I’m back to square one.

Anxiety and insecurity is a bitch because it doesn’t matter how many people tell you that you are wonderful and worthy and loved; you’re Teflon. It all just glides off you because you don’t feel it. Now let me be clear, (in particular for my Mum because I know she’s reading this hi mum I love you) I do not feel like this all the time. A large chunk of my life I feel self-confident and brave, important, and pleased with my image and my work. I feel deserving of the man I love and the friends and family who love me as I know that I should. But when that is gone and I’m just a ball of anxiety and frustration I can’t see how I ever had the gall to believe in myself.

Look I know this is a ramble and it maybe means nothing to a lot of you, but I’m mainly writing this to the young women who flood my inbox with emails everyday telling me they are scared and feel isolated in living with chronic illness. I want them to know they are not alone, and although it isn’t exactly a pleasant thought that another human being feels as bad as you do, it can also be a small comfort. Knowing you’re not ‘crazy’ and that these feelings will eventually dissipate gives us hope.

Maybe tomorrow I won’t want to weep when I see my reflection, and I will feel strong enough to write another chapter of another book because maybe someone might want to read it. If I can convince myself of that then you can too. Or whatever it is you ‘do’; do it! If writing is your bag then go for it! Just don’t write too well, I’m not good enough to handle the competition ;) 

Wednesday, 17 August 2016

Cordon Loo

You know when you walk into a public toilet? One that other human beings use as well as yourself? And you are met with an aroma that stings the nostrils. An unpleasant odour. The toilet almost smells like…let me see if I can get this right…a TOILET?

With IBD we encounter this more than most. We tend to spend a great deal of time in the toilet. Because of this, we are, and I have thoroughly researched [made up] this fact), 99.9% more attune to smells, cleanliness and hygiene. We are also more accepting of other people’s bodily functions because we are consistently judged on our own.

In my handbag, where most women perhaps carry a phone, purse, tampons and a lipstick, I carry all of the above, but also wet wipes (ONE DAY I WILL BE THE WORLDWIDE FACE OF WET WIPES), a small spray to eliminate potential odours, a lorry-load of medication for every eventuality, spare pants, spare tissues (in case of a lack of loo roll), a sick bag and E45 cream in case excessive-wiping is required.

Bet you’re screwing your face up at the thought of all this. Maybe you’re even imagining me ‘having an accident’ and thinking less of me. That’s ok. It’s your first reaction and you can’t help that. But its learned behaviour. We’ve been taught from birth that going to the toilet and performing the most basic function in order to help us remain alive, is a dirty thing which should be kept hidden; and certainly not openly talked about! Heaven forbid!!

We applaud our children when they learn how to use the toilet for themselves. Mothers excitedly tell other mothers about this exciting milestone after weeks or months of back and forth frustration. But when it comes to discussing matters of the rear that’s where it ends. As soon as we are grown we are designed to be ashamed. Go quietly into the toilet. Sit in stony silence until the other person next to you leaves. Don’t FOR GODS SAKE open your bowels when someone else is within ear-shot.

I encounter this daily. I don’t feel self-conscious anymore, for the most part anyway. I calmly do my business and carry on with my day. It means I can successfully function at work, get on a bus without fear, and stand upright. It doesn’t really matter if a stranger is ‘offended’ by me using the toilet, because I understand it’s their programming. With a little bit of their own self-consciousness thrown in. They WISH they could be as laid back and relaxed to drop their drawers in public as I am.

Some people of course, and many of them YOUNG PEOPLE with or without IBD, cannot use the bathroom in the conventional way and require life-saving procedures which leave them with colostomies on their bodies. You perhaps can’t see this so you judge someone for taking what you consider to be too long in the toilet. You assume.

All I’m trying to say here is try to remember that visiting the bathroom is a normal bodily function that everyone performs. You are not special. You do not expel gold-dust scented of the rarest flower.

Going to the toilet is not ‘disgusting’; it’s essential. You being a tit about it is wholly optional. 

Wednesday, 10 August 2016

Pain Killer

A little thing a lot of people without chronic illness may not understand is that it can be really, really difficult to tell people you are in pain. It may sound like a simple act; a brief discussion with an employer, an off the cuff comment to a loved one, but for me it’s often an impossible task.

Today I am writing this in a LOT of pain.

It’s one of those days that come every so often where everything hurts. My hair hurts. My eyes are constantly on the verge of welling up and my hands are fists primed to punch something/someone/your Dad out of sheer frustration. I wouldn’t though, I’m a lover not a fighter, and my arthritic hands can’t make fists right now so it would be a weak slap at the very least.  Plus I like the gifts your Dad buys me too much to rock the boat.
You see it’s easy to write all of this down, to tell a computer screen that I’m in pain, mainly because I can’t see your face as you read this. I can’t see your eyes roll or glaze over as you desperately try to force your brain to tell them otherwise. I can’t see you bored of me, or see the sympathetic head tilt.

I can’t see you disbelieve me. I can’t see you pity me.

Of course I’m not saying you all do these things, of course you don’t. Most of the faces I see are that of concern. And yes I’m supremely open to the suggestion that it may be my EXTREME anxiety and paranoia causing me to see these things in your visage, but it’s just that I’m pretty much a seasoned pro at spotting these reactions now.

The problem with talking about pain when you’re ‘in’ it, is that it allows room for little else other than feeling it. It can be genuinely difficult to even form a coherent description of it when you are experiencing it. I suppose that’s why doctors have developed these charts; the ‘how many out of 10’ and the ilk, for speed and accuracy in treating us. But those charts don’t apply when you are talking to people outside of the doctor’s surgery.

This morning as I struggled to get some sort of relief from the pain in my legs, my stomach, my head and my ENTIRE USELESS CARCASS, I tried to find ways to communicate this without over dramatizing. I didn’t want to sound ridiculous, like I was trying to skive at work, or bore my friends. But instead I played it down, like I always do, because it’s easier. Easier for me, and easier for them? I don’t know. I just can’t bear the judgement sometimes. It’s so utterly hypocritical of course, as I’m always the one who preaches how important it is to be transparent, open and honest in talking about your illness. But today I cried like I’d been subjected to a double-feature of Terms of Endearment and Les Miserables in the bathroom instead.

I’m not looking for sympathy here by the way, absolutely not, but I’m so continually and persistently anxious that I am already pre-empting your reaction to this. I care what you think of me and I wish I didn’t. The bottom line is (by now I shouldn’t have to tell you, but PUN INTENDED), when we are in pain, it’s all we can do just to tolerate that, let alone try to express how we are feeling. So just try to be patient with us. Make us laugh. Don’t let us see that we are frustrating you if we are. I know that may seem selfish but we honestly won’t have the energy to get into any form of debate with you, from brokering a trade deal between countries to forgetting to take the bin out, it’s all impossible.  Give us a bit of time to feel ‘normal, and don’t make us feel that we should apologise for it. Even though I’m 99.9% sure we will later anyway.

Just be kind to us, it really is that simple. 

Tuesday, 2 August 2016

Stress Who

It’s commonly known that stress is a huge factor in exacerbating chronic illnesses such as Crohn’s Disease. It also almost nigh on impossible to avoid. Everyone deals with their own stresses in day to day life, be it struggling with finances, feeling harassed at work, relationship troubles or just not being able to catch that last Pok√©mon. We all have our own issues and we all deal with them in different ways, so there is sadly no quick fix.
One of my main stressors, (and I hadn’t realised it was such a thing until recently) is being around negative people. This is a stress for me, mainly in my day to day ‘real’ job where the environment can be borderline toxic with reams upon reams of people competing to outdo one another in the misery Olympics. Of course being perma-sick like me can also cloud your judgement on these people, as you feel you have a unique outlook on their particular ‘problems’ – mainly that they need to realise how lucky they are not to live with an illness every day. But that’s just a biased and marginally unhealthy attitude and one I sometimes struggle to keep under wraps.
I’ve tried various methods in dealing with these people from straight up ignoring them to trying to play amateur therapist and everything in between. For the most part, nothing works, because the hard truth is; some people love to complain. They LOVE it. They relish finding misery in the minutiae of daily life then amplifying it for all to hear. But because I know being around these people makes me genuinely unwell, and I have no option but to be around them, I try to do certain things to make sure I’m protected. I can’t heal the world and make it a better place, but I can try to shield myself from some of the bile spewed into my airspace. So here are a few things I try to remember when I feel myself being drawn in:
1.  Don’t Become the Person you despise
By that I mean, don’t spend your evenings complaining to your significant other/friends/cat about said person(s) you find so unbearably negative. Although it can certainly be cathartic to vent your frustrations, all you are doing is perpetuating the misery and continuing a vicious cycle of gloom. Plus, you don’t want to be the one talked about in the same vein do you?
2.  Focus on what you can control
So here I’m referring to your mental state. Don’t allow someone else’s perpetually bad attitude to alter your own. Don’t be disheartened either when you find your amiable attitude doesn’t rub off on others, you haven’t failed, you’re not Mary Poppins, just focus on what you think and feel about certain situations and don’t get tangled up in bad feeling.
3.  Change the record
Sounds an easy task to just change the subject, but it's can be a challenge when someone is in the midst of a rant about this that and the next thing. Tempting someone away from the dark side of every situation can be hard but rather than indulging them it's often more effective to subtly change topic. It's easier than confronting them endlessly on their bad attitude, and they have nowhere to go with a rant when the recipient shows zero interest.
4. Act don't react
If this negative person happens to be a friend of yours, it can be tempting to try and solve their problem in the first instance. It’s of course always the right thing to display a degree of compassion for someone you care for/anyone who seems to be in a harmful spiral, but remember to avoid falling into their habits yourself. If you see a common type of behaviour of theirs approaching then perhaps try and pre-emptively ease it, before they slip into the same depressive slump.
5. Put Your Health First

There may come a time, regardless of your persistent efforts to help, when you should consider what you are getting out of a certain friendship and how much of it is draining vital life force from every fibre of your being. If a relationship revolves around one party’s negativity you’ll find yourself a verbal punch-bag, that’s when it might be time to cut ties where possible, or at the very least put some distance between you both. Health and particularly mental health is IMPORTANT and being made miserable and stressed regularly is a strain we just do not need. 

Sunday, 17 July 2016

Saved By The Bowel

I was walking my dog today, he had a bit of a poorly tummy (bit of a running theme in our house) and he unfortunately threw up on the way home. This was on the path on the way into my street and just happened without warning. He was sick, I petted him and after he was done he trotted away quite happily and carried on with his day. However the look he got from a woman across the street stayed with me for the rest of mine.

She looked utterly disgusted. She shook her head and looked at me as if I’d just stripped naked and danced the cha-cha in church. I HAD just done that but she didn’t wasn’t there and that’s beside the point. The point is, she looked as though he had been wrong to be ill in public. In her eye-line.  As if I should have somehow stopped him.

Now I know he’s a dog and you’re probably thinking what does this have to do with IBD, but it was a moment that made me feel the same way I’ve felt many times in living with chronic illness. Embarrassed, ashamed, and ANGRY. You see these ‘moments’ happen a LOT in living with health problems. Here are a few from my (never ending list) of embarrassing moments since I got sick for reference:

-          Stripped down to my bra and pants for an MRI and walked into the room only to be reminded it was for my head only so I didn’t need to take anything off.

-          Threw up on a bus full of people into my BF's hoodie then stuck my face into it in some vain attempt to hide, in the process covering my face in my own vomit.

-          Passed out as soon as a needle hit my arm then threw up all over myself.

-          When my arthritic knee gave way when I was crossing a main road and I had to direct traffic around me. 

-          The time the tube containing my latest stool sample rolled out of my bag in a hospital waiting room under the chair of an old woman.

I could go on for another 56645451354854 examples but I don’t want you to get dumped/ fall asleep/ burn your toast /whatever, on my account. My point is that having a chronic illness often causes ‘embarrassing’ moments. Moments you’ll undoubtedly laugh at later, but in the moment you’ll want the ground to swallow you up.

The main issue I have though is that other people tend to make these moments embarrassing; they judge. They look at you with pity, or confusion or even disgust. They think your illness should be dealt with behind the safety of a hospital-ward curtain, where your sickness doesn’t have to offend their eyes. They have a rule book of ‘done things’ and you throwing up in the street/ on a bus/ on them isn’t one of them.  

But what do they think we are thinking? Well we mainly feel ashamed because they are staring at us like we’ve just arrived from the Planet Zod, we feel vulnerable because they are looking at us with disgust, and while we are trying to focus on simply putting one foot in front of the other we suddenly find ourselves in the position of trying to consider YOUR feelings. Those of an abject stranger. Then we get ANGRY because IT HAS NOTHING TO DO WITH YOU.

The point I’m trying to make is that people with a chronic illness can’t always hide away for fear of offending you. We shouldn’t ever have to. Bodily functions and ‘accidents’ happen to everyone, some more than others perhaps, but that’s our problem not yours. How much of a tit do you have to be to take offence to someone else’s misfortune? A triple-G-cup-sized tit that’s how much.

So when someone is vulnerable and you don’t know the full story, if you can help, then you should do that instead of look on in horror like you’ve just seen your own reflection in a puddle. Also maybe be more mature than that last sentence, and try to bear in mind that when things happen we maybe can’t help it. Having an invisible illness can be hard for so many reasons, please try not to make it harder for us just because it’s visible to you. 

Saturday, 25 June 2016

Grimace and Bear It

A little thing you may or may not know about me: I’ve got a very defensive personality. I snap easily when I feel I’m being threatened. The arms cross, the brow furrows and the attitude of a moody teenager positively reeks from me. I hate it. I try to stop it, because I know it’s counter-productive and halts any attempt at adult discussion, but it’s sometimes almost impossible to rein in. It doesn’t always happen. But more often than I’d like it does, and I beat myself up about it A LOT.
I’m also insecure about my body – I’m scarred and bruised from surgery and seemingly endless procedures, and medication means my weight fluctuates so regularly that I can go from balloon to pancake and back again in a matter of minutes. When I’m bloated I feel embarrassed and ugly. I feel ashamed of my appearance. (So you see how the defensive personality might cause a problem here; if someone so much as glances at my stomach I am on them faster than Nutella on toast).
I’m well aware this defensiveness and my occasional hatred of my own female form is nowhere near a good attitude to have, but at least it’s real, and honest. I’d love to be a shining example of woman-hood who could wholeheartedly embrace her curves and teach others to do the same: and I like to think I do on the second point certainly; I’m my friends’ biggest cheer-leaders when they doubt their own (unmistakable to me) beauty. Only I can’t embrace my ‘curves’ because (my cracking rack aside) mines aren’t natural. They are caused by a crippling illness. The difference between these two pictures for example is 10 minutes. The first was pre-meal, the second minutes after dinner.

Bloating is painful and very uncomfortable. It’s constricting and makes me incredibly self-conscious. Even around the man I love. I don’t like to see myself looking this way mainly because it never seems to be a true reflection of me; even though it quite literally IS a reflection of me. 
In much the same way my scar did when it was fresh and new, it makes me feel ‘diseased’. I know it’s the not fit for purpose parts of my insides that are causing my physical appearance to be altered and it reminds me of what I’m dealing with. I can’t hide under smocks all my life, I have to grimace and bear it.  
This week I’ve struggled with work as my joint pain has escalated. My arthritis is causing my hands and knees to swell and ache. The pain can be overwhelming and incredibly frustrating. I suffer from nerve damage too, (another fun side effect from chronic illness) and that too has been reminding me there is pain to be found everywhere if I look hard enough. Thanks carcass! Joint and nerve pain make me feel old and I’m not. Combined with Crohn’s bloating I feel like a beached whale that can’t so much open a jar at the minute. Although whales don’t have pose-able thumbs and no call for opening jars I suppose, so one nil to me there I guess.
I’d love to be more accepting of what my disease does to my body but I can’t. I won’t. My body is MINE. So why does it feel parts of it are being controlled by some outside force trying to halt the inevitable process of Jon Hamm falling in love with me?
Of course ALL women bloat. You do. You DO; don’t lie Janet no one believes you. You just put gorgeous filters on your Instagram pictures or stand coquettishly behind vases of flowers/your fatter friend so we don’t notice. That’s fine, whatever works for you; just remember when we don’t admit our bodies are flawed (whatever that means) we alienate our own kind. We tell our daughters and sisters and mothers that their bodies are something to be hidden. So WHAT if you stomach swells after a meal? Would you leave your husband if /WHEN his does the same? No, exactly. 
Letting my body dictate how I view myself is stopping me enjoying the short time I have to do everything I can with it to make myself and other people happy. Sometimes we all just need to power through the self-consciousness. There are several things I’d like to see written on my gravestone when the time comes and ‘DIED ALONE DUE TO BLOAT SELF-PITY, SURVIVED/EATEN BY HER 45814845 CATS’ is not one of them.*

*some potential alternatives:


Monday, 30 May 2016

Someone Saved my Life Tonight

How many of you have flippantly said “I could’ve DIED!”? 
Or “I wanted to DIE!”? 
Or even “I’d rather kill myself!”? 

A LOT of you I’d wager.

Ok, now how many of you want to die? 
How many of you have considered killing yourself? 

Substantially less, yes? 

Most of you are probably thinking ‘WOW this got dark really quickly and I want out’ and have already moved on to reading a think-piece on Kylie Jenner’s new lip-gloss. That’s fine. It IS heavy. It’s literally life and/or death.

A few months ago I was low. Deeply in a state of depression which I couldn’t shake. It seemed to last forever: it didn’t. It maybe lasted a month or so. It culminated in me walking home from work, crossing over a bridge and having a fleeting thought about jumping off. I didn’t. I went home and thought about why I thought jumping off a bridge would be in any way a fix or a ‘normal’ thought to have. I was sad, SO SAD, and angry. My partner talked to me. He asked what was wrong, he PUSHED. I was, I am, fine. 

I eventually came out the other side and now I feel balanced and ‘OK’. I even feel happy. That’s fantastic and I am relishing it. But I know I will feel that low again. And again. That’s what depression does – it comes in spells; some last longer than others, some come and go as quickly as a selfish lover, some sadly don’t ever end; they just plateau.

In my short(ish) life, I’ve known someone who killed themself. It’s confusing and distressing and SO sad. They are young! They have their whole lives ahead of them! Repeat to fade. I’ve known people who have tried and failed; either through it not being a ‘genuine’ attempt (attention seeking?) or through poor planning, or just through not being able to follow it through.
There are countless reasons why someone would choose to end their own life. You don’t have to think it’s a ‘worthy’ one; your opinion doesn’t matter to someone who wants to die. You may call them ‘selfish’; but that’s because you don’t want to be left on earth without them. You don’t want to miss them and cry for them. You don’t want to be left without answers, or without having been the one to ‘save’ them.

I say this because I’ve felt it all. I’ve felt anger and frustration and deep unyielding sadness at someone I love not feeling ‘well’ enough to stick around. Feeling that death is a viable option. My fleeting ‘let’s jump off a bridge’ idea is wholly laughable to me now. Only because now I am mentally ‘better’ I can’t imagine wanting to end my existence through choice. I want to live and laugh and love and buy wall decals that say ‘LIVE LAUGH LOVE’. I want to kiss the man I adore until we are old and his beard goes grey. I want to smother my dog and cats with love until they beg for mercy. (Full disclosure: I do that already).

I guess I’m trying to say we shouldn’t judge someone based on our own fears and insecurities. We should learn to take mental-health seriously and listen when someone tries to open up to us. Don’t get angry and shout when someone tells you they are unhappy; they might not have a ‘reason’ they might just feel sad. It’s YOU that wants a reason for unhappiness so you can fix it. But depression doesn’t work that way. It just ‘is’. 

So you can say “I’d rather die!” if you want, I do when I come across an article about Kylie Jenner’s lip-gloss; just remember that when someone says it to you in earnest, take them seriously. I can do better at that. We can all do better. You might just save someone’s life.