Nerve Agent

I’ve always been shy.

It took me a good few weeks to stop weeping for my Mum aged 5 starting school. I would go beetroot-faced when asked a question in front of the class aged 10, and I’d laugh nervously like a borderline lunatic when a boy so much as looked at me, aged 15.

 

Most of that has dissipated these days, thankfully. Although I do still cling onto my Mum’s foot every time she attempts to leave my house, but like the majority of us, I’m a work in progress.

 

Those childhood nerves and inhibitions may have subsided gradually as I’ve aged and been opened up to more experiences and seen a little more of the world, but they seem to have been replaced with something almost even more intrusive;

 

Anxiety.

 

This wasn’t something I was bothered by to a massive degree ‘pre-Crohn’s’. But it’s something I now often struggle to get a handle on. Unlike my Mothers’ ankle. It certainly wasn’t something I’d have considered to be an ‘issue’ either until I realised it was impacting my own life.

 

There is a big difference from saying you are an ‘anxious person’ to actually trying to make a dent in coping with it.

My anxiety manifests itself in many ways:

 

• I’ll overthink anything and everything.
• I’ll work myself up into a frenzy about the ‘what if’s’ of any given situation.
• I’ll put off doing things through nerves.
• I’ll stare at the phone until it stops ringing.
• I’ll talk and babble too much to fill what I’ve decided is an ‘awkward’ silence.

 

Anxiety is a common issue with those of us with chronic illness because we spend a lot of our time thinking about ‘it’. We have a lot of factors to… factor in to our life alongside the normal day to day activities that we all undertake. Whether the issue is with mobility, pain, bathroom worries or mental health issues; we all have our own fears and apprehensions surrounding our illness.

 

Of course getting stuck in our own heads is often dangerous and isolating, so step one in overcoming the worst of this is really in talking about our worries. When we do this we often find they are sorely unfounded and based on nothing more than our overactive imaginations. Not always, but often. When we decide how someone is feeling/thinking about us, we also insult them, and eliminate the chance of them proving us wrong. We push people away through using our own fears as a barrier. Look, I don’t have the answers on how to cope with this, I just want to share with you that you’re not alone in feeling like an insane person from time to time!

 

What works for me may not work for you, but talking is really important. Don’t be afraid to admit you are scared and nervous and that its overwhelming you. It so much more common than you think. People who love you and/or doctors can help to give you clarity on your feelings. Stop beating yourself up for something that is simply a factor of an ongoing illness. It’s not shameful to admit you are mentally struggling; quite the opposite in fact.

 

So the next time someone from Accounts doesn’t say ‘hi’ back to you in the morning at work, maybe don’t spend all day wondering what horrific atrocity you’ve committed against them and accept that maybe they just didn’t hear you.

 

That is the case isn’t it Linda? You just didn’t hear me? LINDA…?!?

Rest In PJ's

A very important aspect to bear in mind when living with chronic illness is 'self-care'.

Firstly, I appreciate that may sound hippy-ish, and may inspire someone who doesn't eat kale or drink pumpkin lattes to feel increasingly nauseous, but at the core of it ‘self-care’ really just means looking after number one. 

In the least selfish way possible, it's vital to ensure that when you feel at your worst (and even when you don’t) that you take the time you need to help yourself feel as well as you can. Now of course that doesn't necessarily mean immediately calling your boss and throwing a 4week sick note at him so fast he gets a paper cut. It just means it’s important to remember that there are things you can do to ease the pressure of a day to day life with a chronic illness. For example: REST when you need to rest. It may sound ridiculous but this is often the most difficult for me. It seems to come exceptionally low on my list of priorities. I’ll always have something more pressing to do first. Then I came to the realisation that really that means I’m placing my own health pretty low down the rung on the ladder of life. And really, although a support network around you is imperative, it’s also vital to value yourself and your own body.

I've begun to try and act accordingly now instead of pushing myself to my body's limits and beyond. For example, if I’ve had a busy day and I’m into a new realm of exhaustion, I’ll find 20minutes to take a nap. Previously I would have made a million and one excuses not to: it's almost dinner time, I don't want to be rude and leave my partner alone, my favourite TV show is on, the moon is in Venus, etc, etc. Now I try to act on my body’s demands and feel better for it.

Looking after yourself may not make you feel massively different physically; it may only serve to allow you to feel a little more rested and give your triple AAA’s a well-deserved recharge. But that’s not really the point. I find it has a greater impact on mental health. It allows you to grant yourself permission to ‘be ill’. You don’t have to excuse yourself for something you have no control over, you just have to adapt to it and sometimes let it win a few battles. You still take the gold in the end; you just do it at your own pace. So put down the dish-cloth and pour yourself a delicious glass of bowel prep, you deserve it! 

In Pain Sight

One of the hardest things to do is define pain. Yet it’s a common aside in living with a chronic illness. It’s also vital in many cases in aiding medical professionals. They need to know the depth of our pain in order to establish how severely (and urgently) to treat us. You’ll be asked to describe pain; rate it on scale of 1-10. Often an incredibly problematic undertaking as it can be so changeable from one minute to the next. Frequently indescribable. When you are in the midst of it you can think of little else other than breathing through it; surviving the next wave.

Over the years I’ve found a variety of ways to vocalise my pain. It becomes a challenge, a game-show where there are no winners:

Nothing feels like it’s in the right place. Awkward, uncomfortable. Unnatural.

Stomach feels like a tornado, spinning, picking up everything around it and throwing it somewhere it shouldn't be.

When you cut your finger then eat a salt and vinegar crisp? That, but in my intestines.

Pain can frequently be hidden under a myriad of other, more immediately troublesome symptoms, such as fatigue, nausea, feeling faint. It can hit more severely as those symptoms improve. Like ticking of the most depressing list in history and finding you've still forgotten the thing RIGHT AT THE TOP. It can feel intense, overwhelming. It can mess with your head and make you feel like you are losing you mind. It can endure and impair every bodily function. It takes no prisoners and gives no relief. It can make you cry through sheer hopelessness and frustration.

Where do you rate that on 1-10? 11?

(Side-note: The first time I said ‘11’ when a nurse asked how I’d rate my pain, I followed it up with a terrible Spinal Tap joke then collapsed in a pool of my own vomit. Apparently. I don’t remember – I was in in pain). 

When you live with a chronic illness you’ll find a LOT of people will ‘question’ your pain. Doctors, nurses, family, friends, employers, even pharmacists. They all want to know you’re not ‘faking it’ or exaggerating. They want to know you aren't trying to take an overdose; trying to get out of work; trying to seek attention – a rare few will want to know you are TREATING YOUR PAIN EFFECTIVELY. Which is GREAT. So many times since my diagnosis I've felt ashamed in asking for help with my pain. 

At the very worst I was in hospital and lasted a good 6 hours on the mild concoction they’d given me for the burning in my bowels before I literally couldn't stand it. I could move, couldn't stop sobbing and was using all my energy not to scream and wake the pensioners I was sharing the ward with. When the nurse finally responded, I had to beg for pain relief which was met with a sigh and a raised eyebrow. I was tarred with whatever brush she wanted and it felt AWFUL.

It also made me acutely aware never to doubt my own pain and certainly not to deny it. I know my own body, and I know when something is wrong. Any raised eyebrows or sideways glances from others are irrelevant. It may make my face redder than a field of poppies against my will when my pain is questioned, but it won’t shame me into not properly treating it.

If your pain is an 11, or even if it’s not - you don’t have to tolerate it. And you shouldn't.

There's an Ill in the Air

It’s World IBD Day!

Which, as we all know stands for ‘Irritable Bowel Disease’!

No?

Oh, sorry I meant ‘Invisible Bra-Straps Day’!

No? Really? That’s my favourite day as well…

Ok, so I’m joking OBVIOUSLY, we all know it stands for ‘I Banged Dave’. No, sorry you’re right, that’s an excerpt from my upcoming kiss and tell novella, 50 Shades of Dave.

I’m just being hilarious and silly as always. (Sorry Dave).

Today is World ‘Inflammatory Bowel Disease’ Day. It’s a day where we aim to raise awareness of Crohn’s Disease and Ulcerative Colitis. Traditionally conditions that often go unspoken due to their ‘invisibility’ and complexity. It’s very easy to fall into the trap of keeping quiet about it.

We find people often don’t understand just what is involved in living with a chronic illness, so we just don’t open the dialogue. After all, it’s easier that way isn’t it?

No.

Not talking about IBD makes it shameful. It implies that as patients we have something to hide, something to be embarrassed about. It allows ignorance to run rampant, like me in a pub full of men called Dave. It causes insecurity, anxiety and confusion. When we remain mute on the subject of our illness we allow others the space to come to their own conclusions. (Conclusions, that are wrong; 99.9% of the time).

We have to talk to ensure we are consistently reaffirming the point that we have absolutely nothing to be ashamed of. We are living with illnesses that massively affect our lives and should remind ourselves often, that leading ‘normal’ lives around an abnormal illness, takes huge courage, humility and strength.  

So what to do to spread the word? And is all awareness ‘good’ awareness? Well it’s certainly vital we teach those outside of our illness what it entails, and how it affects our lives, but how?

I feel education is of the utmost importance. How can you expect strangers to comprehend your illness when you can’t really explain it yourself? I have Crohn’s Disease and I’M still learning about it. I experience something new every day. It’s never ending.

We need to help one another educate ourselves and others.

If you are knowledgeable about IBD then share! Don’t patronise other patients. When you do that you only make them retreat further into their diseased shells. When I was first diagnosed there was so much information to take in it was utterly overwhelming. It was almost impossible to distinguish the accurate from the hyperbole. Everyone has their own horror story to share and none of them help ease a worried mind.

Use days like today, (and every day) to share your knowledge and support those who maybe don’t have as much of it as you. Don’t just raise awareness; raise the bar. Give the gift of information. It’s the most useful gift you can give; it’s non-returnable, recyclable and never gets old. 

Can't Bowel Me Love

Let me begin by saying I do not, by any stretch of the imagination, profess to be an expert in matters of the heart. In fact I've made some questionable choices in the romance stakes over the years and even more mistakes in relationships. But who hasn't? It’s how we learn. But bearing that evidence in mind, please feel free to take any of the following advice with a bargain-bucket-load of salt. 

In my defence however , I would mention, that I do have over 30 years experience in liking boys, over a decade’s worth of long term romances under my belt, and 6 years’ experience (diagnosed anyway) in being in a relationship with a chronic illness (and a man obvs).  

I'm currently in an almost decade-long relationship with a man who has known me pre, and post, Crohn’s Disease. I’m not going to spend this post getting all soppy about him of course, so put your sick bags down. Suffice to say I could read every dictionary in existence from cover to cover and I'd still never find the words to describe the feeling of his hand on mine. I’m quite partial to him is all I’m saying.

Anyway. The point of this blog was to share with you what I’ve learnt in living with a chronic illness, and how it affects your relationships, romantic or otherwise. As with the diagnosis of any form of illness, there will inevitably be a shake up within your intimate circle. Whether you want there to or not. And I’m not just talking about colonoscopies here, you feel me?

When you are ill it can seem all consuming, and it usually is, but it’s important to remember its also hurting those around you. Everyone who loves you must also learn to adapt to your condition, and that can often be harder on them it is for you. It always crucial to remember the person 'loving' the sick one: the care givers, who play a vital role in helping us to lead as normal and happy lives as possible. They may not be experiencing your pain and suffering, but they may be battling their own demons in acclimatising to your changing body and mind.

That’s why there are a few important things to remember in walking the tricky, sickly tightrope with your loved ones.

1.  Don't stop talking.

The minute you begin to shy away from openly discussing your thoughts and worries is when things start to crumble. In any relationship. Curiosity at what the other is thinking breeds resentment, paranoia, and worry that it's them causing you to feel in a certain way. When most likely they are just struggling to adapt or understand what is happening to you. Inevitably it just causes general unhappiness and an overall sadness that someone you love can't bring themselves to share their fears with you. Of course this isn’t necessarily the case; there a million and one reasons why patients don’t communicate their worries with their partners, friends and/or families. Primarily not wanting to cause them what we would deem to be unnecessary pain or worry. But don’t forget it’s vital we let them make up their own minds. We can’t change or predict someone’s reaction, and we shouldn’t impound our misery but keeping it in.  

2.  Don’t lose sight of your self-worth.

Please bear in mind that to you as the patient, your life may feel as though it has changed beyond all recognition; that you have changed; but to your loved ones you are still the person they care for, only now 99% more diseased. You have a condition, and although it will undoubtedly have an impact on your life, it doesn’t have to consume you and everything in its path. It’s not me just before my period. Don’t forget who you were before you became ill, who you still are and can be, despite your condition. It’s devastating to watch someone you care for give up, so don’t be that person.

3.  Life is still going on around you.

Yes, you are unwell, and yes, it’s just awful, and yes, ME ME ME, but hold on a minute Miss Self-Pity 2015, what’s the craic with your partner? Your family? Your friends? Do they still have lives or are theirs on pause until you decide it’s time to move on from relentless discussions about your bowels? Often when patients are ill for protracted periods of time, conversation goes stale and a bit too ‘medical-ly’. Appointments, procedures, surgery, blood tests, collecting prescriptions etc, can all often feel like a full time job, but don’t forget there are people around you who have their own difficulties and maybe want to discuss them with you. Don’t obsess over your illness and don’t expect others to do the same. You’re only making it you and not merely a part of you, if you start down that road.

4. Let someone lighten the load.

Don’t play the martyr and try to do it all yourself. Don’t struggle with things to try and prove some point to yourself or others. Especially not when you’re going to use your difficulties as a stick to beat someone with later. I’ve personally found day-to-day things a lot more testing since I became ill; what with the fatigue, pain, general blue moods and other array of symptoms, it’s often hard to muster the enthusiasm to get out of bed let alone carry out all the chores ‘normal’ people do. So if you live with someone, explain how you are feeling. Make it clear you are struggling and let them take some of the burden. Discuss what you can do if it makes you feel more ‘useful’, and don’t beat yourself up over what you can’t. If you don’t have a significant other, ask for a helping hand from your family and friends when you need it, or attach tiny mops to your cat’s paws.

5.  Teach rather than preach.

Overall, talk and don’t stop talking. Communicate and trust in those you love to help. Yes, they may not understand, and that may be incredibly frustrating, but don’t expect miracles overnight. Did it take you two minutes to come to terms with having an incurable illness? Educate them where need be. If that love you they will be more than willing to learn. Don’t berate someone you love for not properly grasping the extent of your symptoms/feelings/pain when it has been explained through nothing more than a complex system of irritated sighs.

After all, it takes two baby, to make a dream come true.

Two cats that is. 

'Travel Time' - #HAMWC

Today's Prompt - 'If you could travel anywhere in the world, where would you go and why? Maybe you’ve already travelled to an exciting place and want to go back!'

I'm pretty inexperienced in travelling with chronic illness as I haven’t had the chance to fly the coop since my Crohn’s diagnosis in 2010. The furthest I've gone is from my home in Scotland, down to England when I was asked to speak at a conference held in honour of World IBD Day. 

That in itself was scary. 

I flew down to Birmingham for the meet-up, then travelled by train to my hotel. I went by myself, which in hindsight wasn't the best idea, but it was exciting and new at the time. It was a self-inflicted show of independence and courage: I wanted to prove to myself, and everyone around me I could do it all by myself like a big girl, without anyone playing nursemaid en route. I did it - and spoke to a room full of people about my Crohn's journey and how I became a blogger. It was terrifying and intimidating but a huge step forward for me in terms of gaining confidence about my abilities and my disease. 

In terms of places I love to visit, one of my top three would have to be Holland. I've been several times now since my late teens, at very different stages in my life, and have adored it every time. The last time I went it was with my partner way back in 2009 (I think). We were there for 2 weeks and for about 90% of that time I was feeling distinctly below par. I was seriously ill but didn't realise it at the time. I was lethargic and nauseous, had next to no appetite, was constantly getting up close and personal with the porcelain, and could barely muster the energy to drag myself out of bed in the morning. 

I didn't understand what was wrong with me, and felt I was ruining what should have been an amazing romantic break for my partner and I.

I couldn't explain my state to him, because I didn't understand it. I felt beyond awful but like nothing I’d experienced before. I was in pain ALL THE TIME and was almost inexplicably lazy. I had zero enthusiasm for anything and trying to feign it just made matters worse. I was in one of the most beautiful places in the world with the man I loved, yet all I wanted to do was lie in bed. 

12 months later I’d had a part of my bowel removed as I was slowly fading away through severe Crohn’s Disease. 

I’d like to return to my favourite place again with my favourite man in existence. If James Spader is unavailable it’d be nice to take my boyfriend too. 

So, so much to adore; the tulips! The coffee! The canals! The bikes! The accent that I'm never likely to perfect no matter how hard I try! 

I want to be well enough to travel again and do it without anxiety and fear of the unknown. I hope that’s possible. I want to see the world before I'm too old to see at all, and now I know what I'm dealing with, I’ll do everything in my power to ensure my disease never stops me doing just that.

This post was written as part of WEGO Health's Monthly Writers Challenge - #HAWMC 

Hips Don't Cry

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. 

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. 

'My Hero' - #HAWMC

Today's Prompt: 'Who are your heroes and what makes then awesome in your eyes?'

I've never really condsidered anyone to be my 'hero'. It seems such a strong word; evokes so much in terms of bravery and selflessness. 

Mainly I suppose I'm not a fan of the word 'hero' because it seems to be used so readily. I always think of cartoon or fictional 'heroes' when I hear it. Like Tarzan swooping in from a branch to rescue a scantily clad beauty from the jaws of a salivating tiger. Or Batman punching robbers with SWAG bags to rescue an old lady from having her priceless pearls pinched. These heroes are always selfless and brave, they risk their own lives to save others and expect nothing in return. They also aren't real.

When I think of 'real-life' heroes in my own life, I have to scale it down a little, and forget about capes, and pants worn over tights. unfortunatley, as those are two of the things i think about most in any given day. My main heroes don’t have any special skills, they don’t own sparkly costumes and they certainly don’t know kung fu.

My parents are two of my heroes. They love me and my brothers' unconditionally, and  teach us how to laugh and to give and accept love. They have shown me what perserverance and courage can do, and have made me feel safe and comforted from birth to the present day.
They pick me up when my heart and body is broken, put me back together again and never expect anything from me other than to be me. They are proud of me when I'm far from proud of myself, they have taught me forgiveness and generosity, and to valuable others happiness every bit as much as your own.

My partner is my other hero. Although we may have had more up and downs in our lengthy relationship that Burton and Taylor, (albeit with fewer marriages), we have worked together to maintain something quite wonderful. He has shown me how to look at my 'flaws' for what they are; part of me and nothing to ever feel shame or anger about. I'm proud of him a little bit more everyday for everything he has achieved and everything I know he will achieve in the years to come. I'm honoured I get to be a part of his life and constantly flattered he even entertains the idea of being part of mine. He makes me laugh 'til my sides hurt and when my sides hurt he looks after me.

He calms me down in that way that love does.

When I became ill it didn’t even enter his head to do anything other than support me, when others would have (and did) run a mile. He's my hero not because he defends my honour in bar fights (although he would), or because he scales the side of buildings to save me from a possesive gorilla (although he would), but because he has shown me what it means to feel truly happy.

Everyday heroes are better than comic-bok heroes because they are real. And punch less.

Last but not least, my friends, and all of you battling chronic and debilitating illnesses everyday are my absolute heroes. You all inspire and motivate me to be he very best version of myself in spite of my condition. Your words of encouragement even on my darkest days heal more than any medication. When I see what so many of you achieve despite counless obstacles standing in your way, it only serves to give me the kick up the backside we all sometimes sorely need.

You are heroes to me because you are thriving rather than just surviving.

This post was written as part of WEGO Health's Writers Activist Monthly Challenge - #HAWMC

Never Miss a Sick

I’ve written before about the most gut-wrenching aspects of living with a chronic illness; seriously, I’ve written about it a LOT. So if you read my ramblings regularly, or are just like me, you should know by now there are many horrible day to day obstacles we have to overcome in living the life of a chronically ill person; from pain, medication, nasty drug side effects, stupid uninformed comments, the list really is as long as a lifetimes’ worth of loo roll. And what a DREAM that would be.

But one of the most seemingly straightforward issues we face is the one which personally causes me a veritable bucket-load of anxiety and guilt. That’s being forced to miss work, and the supposedly simple task of phoning in sick. It’s an undertaking which causes me incomprehensible worry, embarrassment and guilt and I’m still not entirely sure why. I know, because I’m the one doing it, that I only miss work when I have no option but to. And I know that I’d never become one of those awful people who uses their condition to gain time off, or uses it as an excuse for poor attendance. I know all of that and a million other things but it doesn’t stop me feeling useless and ashamed by the fact that I can’t drag my diseased carcass out of bed.

I’ve been through all the various stages of poor attendance, warnings, 2^nd warnings, being forced to pledge your allegiance to your employer through blood, but then haven’t we all. I’ve never been sacked (touch wood) due to my sick-leave, and I know I’m currently not anywhere near that stage, but it’s a constant nagging doubt in the back of my mind which grows arms and legs with every day I am unable to make work.

Today is one of those days. I’ve been in intense pain for over 24hrs and have barely slept thanks to nausea, headaches and a night fever that would put the Bee Gees to shame. I can’t really remember the conversation I had with my manager as I was absolutely up to my eyeballs in painkillers and ready to pass out. The strange thing about phoning in sick is the sense of instant relief at knowing you can now relax safe in the knowledge that your employer doesn’t think you are M.I.A, is almost instantly replaced with the guilt that you should be working. (At least for me anyway). I start to mentally talk myself into the idea that I’m not ‘really that bad’ or that I could maybe at least make up the missed time later in the day, or that I could actually just get up and face it like a (wo)man and stop wimping out all the time – but by that point I’ve either projectile vomited and/or collapsed to the floor like a broken-hearted 1950’s actress clinging to her beloved’s ankle as he walks out the door. But with less make-up and more dramatically. This guilt is compounded by the feeling that you are relaxed and comfortable at home and therefore should be at work. If you can feel better sitting at home then you should be absolutely fine sitting at your desk shielding calls, waiting tables, walking around in a boob-tube down at the docks or whatever it is your Mum does for a living.

Having been an employer myself, I can understand this sickly situation from both sides. You have to know what is wrong with your employee in order to establish how long they are expected to be off, and how you can best support them whilst they are off and when they return. That’s the theory anyway. But how much do you really need to know over the phone? As a patient, having to explain yourself when you already feel at your worst can be upsetting and distressing, especially if you feel there is a lack of trust or that you are not being believed.

If you are forced to take time off, try to remember you have chosen to do it for a reason. In living with an incurable illness comes experience, and you will begin to gauge what passes as ‘workable’. I’ve often been in work when very ill at times when a ‘normal’ person would've bowed out disgracefully. I now know what to tolerate and what to accept as time to GO BACK TO BED. 
Leaving the world for a day or so is sometimes vital to be well enough to step back into it. 

Stool Runnings

It's difficult isn't it, when you find yourself straddled uncomfortably between happiness and misery. 

Like some sort of 50 Shades of Grey activity where you've forgotten your safe-word it can be incredibly difficult to manoeuvre yourself out of a situation you're not comfortable with. 

You stretch out a hand towards the life you envision for yourself yet it's always just out of reach. It's a painful losing battle to find yourself disappointed again and again at the hand you feel life has dealt you, and you're seemingly helpless in your vain attempts to clutch at what you desire in life.

In suffering from a chronic illness these feelings may be familiar to some. Commonplace, even. To outsiders airing these feelings of often abject misery can be perhaps worrying and a cause for concern because they don't feel the relentlessness of your illness. 

They don't feel the pain all day every day that surges through your body. 

They don't experience the uncomfortable and interfering symptoms that you do, and they don't feel physically and mentally exhausted every day in life. 

Even on the 'good days' patients will think about their illness; why aren't I pain? What does that twinge mean? What if I need surgery again? What if I need to go to the toilet and can't find it? What if I've forgotten my wet wipes?

I try not to wallow too much in the pain I regularly feel because I'm tired of feeling it and want a break. Also because it's B-O-R-I-N-G to talk about. 

Chronic illness isn't fun. 

There's no metaphorical finish line to cross because there's no getting better. I don't jump into the air and click my heels together when I get home from yet another hospital visit because I've generally been handed another deluge of information to begin to comprehend, alongside a massive bag of foul-tasting drugs. But enough about my dealer. Kidding Mum! Prescribed drugs, obviously. I don't have a 'dealer'! But if I did I'd like him to be called something like 'Crazy Leroy' and wear loud shirts and shiny brogues. 

I digress.

I write often on the mental health issues that can often coincide with chronic illness, from anxiety to depression, as I don't believe it's something to keep quiet about. It's not shameful, or embarrassing to admit you sometimes feel low. It's safe to talk and be open about your feelings because you might not feel safe in yourself by keeping them in.
I often align suffering from IBD with grieving for a loved one. Not to in anyway minimise the horror of losing someone close, but it's apparent to me that the so called 'stages of grief' are startlingly familiar to anyone who has faced the diagnosis of an incurable illness.

Denial, Sadness, anger, depression, acceptance.

I was told last year I should "learn to accept" my disease. How do you go about accepting it exactly? It's not a bunch of flowers. It's an incurable condition I will have to endure for the rest of my life.
I suppose in terms of 'acceptance' I've come to the realisation I'm not going to get better. That's not to say I won't find a treatment to suit, but that I won't wake up one day and find myself Crohn's-free.

Shortly after my diagnosis I felt for a long time that I was looking at my illness through the eyes of everyone else: my parents, family and friends. The man I love.
I'd taken on board all they felt and predicted for my diseased future, and just rolled with it because it was easier. When I'd recount my stories of surgery and hospital visits it would feel like me talking about a friend: difficult to describe I suppose, but I think the mind has a way of closing off certain parts to protect itself; I wasn't physically strong enough to cope with what was happening to me so how could my mind be expected to comprehend such life changing news? The truth is there is no right or wrong way to cope with chronic illness; it's abut finding what fits you, not pushing yourself too hard, not punishing your body and ensuring you aren't bottling your feelings up.

I don't mean to depress or upset, because the majority of the time I personally feel incredibly lucky to have amazing people in my life, for all of you lovely readers, and for the love I have around me. But often I feel sad, and exhausted, and that's when I (and YOU) have to remember that this particular storm will pass. It won't last forever. Even if my disease will.

A View to a Pill

When you are chronically ill or unwell for a protracted period of time, it’s incredibly difficult to maintain that infamous ‘positive attitude’ we are all led to believe in. That hallowed state of mind whereby, whatever life throws at us we can get through it with the aid of only a cheesy grin and a blind faith in our doctors, bodies and ourselves. I’ve personally never been one for the ‘It’ll all work out in the end!’ approach. I favour medication, and people with medical degrees over sticking on a CD of whale music and burning a few incense sticks.

I’m a big believer in trying to avoid negativity wherever possible; it’s something that can certainly compound the stress and upset of an already difficult situation. Hospitals are rife with bile, and not just of the physical kind; people who are desperate to remind you that they are worse off than you and that nothing is going to get better, like, EVER. They advise you on how terrible their condition is and frighten the life out of newly diagnosed patients with inaccurate horror stories on what’s ahead of them.

I have various friends with chronic illness, who, like me struggle with the idea of ‘positivity’. Not to make us sound like the aforementioned nightmare hospital roomies, but we try to be realistic about our situations. There isn’t anything wrong with this; yet we are often made to feel we are being negative purely because we don’t skip around with flowers in our hair as we haven’t vomited in 24hrs. Being realistic isn’t the same as being negative. Please do not assume because we are gritting our teeth behind our cheesy grin, we are purposely choosing to be difficult.

Sometimes ‘thinking positive’ isn’t always productive for us. Putting all your eggs in one blind faith-filled basket can often serve as a frightening reminder that we aren’t ever necessarily going to ‘get better’. Chronically ill patients often set themselves mental goals such as; “After this appointment I’ll be sorted...” or “Once I’ve had my operation I’ll feel better...” are often setting themselves up for a major positivity fall. When said ‘goal’ has come and gone and you still feel beyond awful, it can be so disheartening you feel utterly hopeless. When those around you keep encouraging you to think about the future it can be excruciating. Most people with chronic illness struggle to think about tomorrow let alone months and years down the line.

I’m absolutely not encouraging anyone not to think positively. If that’s what works for you then that’s honestly great! I just worry that pushing yourselves to create possibly un-achievable goals will do more harm than good. Focus on what’s within your control; be proactive on educating yourself and those around you on how to best treat your illness. Mentally and physically. Listen and learn from the experts and ensure you are doing all you can to feel as well as possible.

If all else fails, look at this picture of my cats giving each other a high five and watch your worries simply drift away. Now where did I put those incense sticks…? 

Drown in my Crohn Tears

I’ve been particularly poorly in the last few weeks; my disease has been well and truly kicking my backside, in more ways than one. I’ve noticed in this period of relentless illness that the comments and helpful ‘suggestions’ from outsiders seem to have increased tenfold.

So in order to establish whether or not I am just particularly crabbit (=irritable for non-Scots), or if people really do weigh in on my IBD as much as it seems, I undertook a silent experiment. I noted, physically and mentally, everything someone said in relation to my illness that rubbed me up the wrong way. No, it didn’t serve to make me feel any better, but it did amaze me as to how regularly I tolerate this nonsense and still don’t have a criminal record.

Feb 2^nd

When advising I’ve lost weight in the past few days, a colleague;

“I’d love to lose weight that easily!” closely followed up with “It must be great to be so skinny..”

I don’t think I need to say too much about how unbelievably insulting that is to someone with a chronic illness. It may not appear rude to the untrained (or should that be un-diseased) eye, however if anyone has as much as an inkling of knowledge on Crohn’s Disease and IBD, you will know that losing weight ISN’T a positive. It’s yet another scary sign things are getting worse. At my worst I’d dropped 4 dress sizes and 5 bra sizes and was a horrifically skeletal version of my former self. I was doing everything in my power not to be photographed beside trees for fear or becoming invisible. Scrap that, I was doing everything in my power not to be photographed at all.

Feb 4th

Involved in an online discussion with a fellow IBD patient, who advised me that my blog is;

 “..misleading, as it implies we can’t get cured”

HELLO? I may have missed that almighty bombshell whist vomiting or on the toilet AGAIN, but Crohn’s is still currently INCUREABLE. Therefore I’m not actually implying anything; simply stating a fact. My blog is a diary of sorts of MY personal experience in living day to day with the disease, not a journalistic attempt at filling peoples’ already vulnerable heads with false hope and incoherent theories. To imply I don’t want to be cured is unbearably ridiculous, and if you had taken more than 5minutes to actually read my posts, you would know I don’t enjoy this disease. I despise it.

Feb 5^th

Above said daftie, then posts a passive aggressive tweet aimed clearly at me for having a difference of opinion and promptly deletes it through cowardice when I have the gall to reply. YAWN. It’s incredibly depressing when people who profess to suffer from the same illness as you then backbite simply because we don’t have the same attitude. Chronic illness can already be an incredibly isolating situation to find yourself in, so adding to those feelings through what can only be vanity or insecurity at how you truly feel, is distinctly unhelpful. I talk openly about how Crohn’s affects my mental health, relationships, bowels; I’m not ashamed of being sad or angry or afraid, I’m not frightened of being realistic about how IBD affects my life – it’s empowering for me to be open about it. I won’t ever be made to feel that is wrong, by anyone’s standards.

Feb 8^th

Stranger tells me to “eat something hen, what’s wrong with you?!” when I’m sitting alone in a café nibbling on a slice of lemon loaf.           

Feb 10^th

Colleague tells me to “try eating less bread”

Feb 11^th

Colleague tells me to “try eating more nuts, I read it in Glamour magazine”

Feb 12^th

Colleague says “you’re still ill..?”

I lose the w(ill) to live.

Feb 15^th

Friend texts to tell me they read about “aloe-vera being a cure” adding “it’s probably bullshit though…”

Feb 16^th

Stranger at hospital tells me that “Coconut Water will sort you out, I read that, there are loads of supplements you can take as well” and that “Crohn’s is the same as IBS, you’d disagree but I have IBS I know what you’re going through”

I internally scream until my lungs fail.

When looking back over this few days it’s disappointing to see that this is pretty much an accurate example of everyday; nothing out of the ordinary here. Everyone and their wife/ husband/ lover/ cats have an opinion on my disease and there’s little to nothing I can do about it. Grin and bear it? Or grimace and gently correct everyone without IBD? I’ll be sticking to the latter, when I have the energy to do so. And if I want to eat half a piece of lemon loaf because that all my dodgy insides will tolerate, then I’ll do it. And generously choke you to death with the other half. 

Love Is My Disease

Dear Disease,

You and I have been together for a while now, and I think it’s time I was honest with you about how you make me feel.
We really have been through a lot together, and I don’t mean to apportion blame... but I think you are overdue a bit of a reality check.

I'd firstly like to remind you that in no uncertain terms, you are the principal and most relentless interference in my life. You are the single most infuriating thing I've ever experienced. At least since my corner-shop stopped stocking those big jars of Nutella. Much like that little bit of curly hair in my fringe that just NEVER sits right no matter what I do, you are pretty much a daily irritation. You call yourself a ‘chronic illness’ and it’s a fairly apt description. You’ve been a relentless pain in my neck (and everywhere else) since day one.

I'd love to be able to say I was fine before you came along but I suppose I really couldn't say that with complete honesty. I was internally all askew and I guess I always felt my body wasn't quite like other bodies. Some things just didn't seem to make sense. I don't mean to blow my own trumpet, but in my youth I had a fairly decent figure, I was pretty fit and active and could even occasionally look at myself in the mirror for more than 60 seconds without wincing. I took endless photos of myself and my loved ones and had lots of fun in amongst all the hard work of college and work, and more work. 

After you came into my life the photos dried up. The mirror and I became distant, and all that fun was swiftly replaced with completing endless crosswords in-between all the vomiting, shivering, crying and despairing, wrapped up tightly in hospital sheets.

If you recall we were first properly introduced when I was in my mid-twenties, but we’d later come to realize you’d always been hanging around since I was a child in some way or another. When you hospitalized me (AGAIN) at around 26, it was then I first heard your name and a little bit about you. I was confused, angry and devastated all at once. The doctors told me you were called ‘Crohn’s Disease’ and that you were incurable. The idea that I would be stuck in this toxic relationship with you forever seemed almost too much to bear. I didn’t choose you, you chose me. Like some awful arranged marriage where I was destined to live my life with you whether I wanted to or not.
Since we met, you’ve put me through so many hospital visits I’ve lost count, you’ve caused me to have parts of my bowel cut out, you’ve left me with scars, you ensure I’ll be on medication for the rest of my life and you routinely require me to have cameras inserted down my throat and inside my colon. You’ve investigated my rear end so often I can’t keep track, and that was just the weekend. You can be such an all-consuming disease, particularly when I’m in the midst of a flare up. There are times when you ensure almost every single part of me is in pain. You make even my HAIR hurt, how is that even possible? In fact I’m not even angry about that one, I’m almost impressed.

Under normal circumstances (whatever they might be), you have to be factored into my plans every day, and in everything I do. Talk about possessive. I wake up thinking about you and I go to bed doing the same. In waking I have to plan my morning routine around what state you’ve put my bowels in upon getting out of bed/and or having breakfast. In going to bed t night I have to consider my real-life-human-man-partner and if my incessant trips to the toilet will keep him awake, or whether I’ll be able to get closer to him than just a cuddle without feeling nauseous. 
I know I may badmouth you sometimes, (ok a lot of the time), and I’m sorry for that, but I want you to see just how hard you have made life for me. I suppose I love and hate you all at once. Bit of a conundrum aren’t I? Like most people, there are many things in life I love and hate in equal measures. For example I LOVE Nutella, but I HATE how small and awkward they make those jars – how are you supposed to get a normal sized knife in there?! It’s almost like they are FORCING you buy more…

At first, and for a good while, I hated the sight of myself with you. You destroyed my body and mind. You left me with scars, and internal and external irreparable damage. You caused me so much stress that I suffered constant pain and continuous pounding headaches. The medication you insisted I take made my hair fall out, gave me ulcers, made me pile on pounds or shed countless weight almost overnight. In those moments I watched parts of me drift away and felt less of Me. Less of a woman. 

You were the worst relationship I ever had. 

But we must persevere. It took me a long time to face the fact that I was never getting rid of you, but when that finally sunk in, my attitude towards you changed almost overnight. I realised I had to accept you as a part of my life and begin to make an attempt at living in harmony, rather than relentlessly trying to fight you. It all became just too tiring. I didn't like the idea of you taking away my independence, so I eventually resolved that I didn't have to let you. I had to take a bit of the control back. I had let you have the upper hand for too long. There was no equal footing in our relationship because you held all the aces. You would decide what we did and when we did it, whether or not I went to work, and you had the ability to hospitalise me at the drop of a hat. You were toxic for me. I came to see that if you had your way I would be resigned to my sick-bed watching yet another Breaking Bad marathon, in hospital, or worse, the morgue. I was playing a dangerous game of denial I had no chance of winning. 

 Now I know you are with me for life it's a little easier. I treat my body with the respect it deserves. At least until the cravings for mashed potato hit, then all bets are off. I realise I'm only punishing myself in the process of trying to fight you. I have to take care of myself because you’ve shown time and again you won't. I have to ensure I do my utmost to keep myself as well as possible, physically and mentally, and for the most part I do. Life gets in the way though and it's a struggle juggling you, alongside work/a social life/my home life.

You have changed my life in immeasurable ways, but not all of them bad. Having you as my illness has forced me to open up and allow other people in. It’s cemented my relationships with the best and most treasured people in my life, and reminded me how lucky I am. You’ve allowed to me to remember just how much I am loved. Anything that has the power to be felt over agonizing pain can’t be all bad. You’ve reminded me to love, and show that love every day with a ferocity that knows no bounds.

Having you in my life has also made me acutely aware of what I can achieve if I set my mind to it. If I choose to work alongside you and not allow bitterness and anger to eat me up, I can gorge on a determination that's hard to fake. When your own body tries to set limits for you, that's when your mind puts its proverbial foot down and forces you to take action. I've surprised myself in what I can, and have coped with and what I can do when I really push myself. 

You have also taught me an amazing amount about my own body. About bodies in general for that matter, and how incredibly they function. (Or not as the case may be). It's been a thrilling adventure for a woman who was once squeamish at the sight of her own nail breaking. I've been through so many toe-curling procedures and had so many implements inserted in so many orifices I've just had to get over that girlish nausea. And that was just the weekend.

You still interfere a LOT of the time, but when I’m able to be the 'old me', even with you tagging along, I absolutely relish it. Anyway, let’s raise a glass of nutritious (and rancid) smoothie to the rest of our lives together. You may make me feel weak but I am stronger than you think and don’t forget it. I realize now it is within me to maintain ‘me’. No one can cure me of you, and no one can tell me how to feel. It’s up to me to decide if I want to lie down and be beaten or get up and embrace the good stuff.

I love and enjoy my life despite you. Now who has the last laugh? 

Yours always, in Nutella,

Kathleen x x