The Crohn Way Soirée

On Friday we held a launch event for my book ‘Go Your Crohn Way’. It was AMAZING. Being an inexperienced ‘author’, I’d never even attended a book launch let alone held one for myself, so it was a very daunting prospect! Thank-fully I have an amazing partner who took the reins on the majority of organising the event; he also acted as the host with the most; welcoming everyone along, introducing the night’s activities and even holding a Q&A session with me! VERY FUN.

We held the launch in The Royal Society of Edinburgh, a beautiful building within jaw-dropping distance of Edinburgh Castle. The RSE was created in 1783 by Royal Charter for “the advancement of learning and useful knowledge” and has a strong medical background. It’s also IMPRESSIVE AF. I certainly don’t profess to be learned enough to ‘teach’ anyone anything (although I can name AT LEAST 10 breeds of cat in under a minute), but I do hope my book offers some useful knowledge on how to live a full (and happy) life with IBD.

The launch allowed for me to talk a little about the basics of Crohn’s Disease and Ulcerative Colitis, and read a little from my book. That was SCARY. My knees were a-knockin’ and I was breaking into a cold sweat but I got to the end of it without passing out and no one left mid-way through so that was a bonus! James (my BF) and I had a Q&A where I fielded brilliant questions from our guests. Many of which almost had me sobbing but I was running on too much adrenalin to even coax out a tear at that point. We had delicious canapés and wine and social networking, and a book-signing! THAT was a thrill in itself – people actually queuing up to have me sign their books like a real life author! I loved every minute; especially meeting some who had come such a long way to attend the event.

There was such a great and inclusive atmosphere in the room that we couldn't fail to feel comfortable. Bowels have never felt so entertaining.

Today, a couple of days later, and now that we have both come down from our ‘successful-event-high’, I feel overwhelmed. I've cried more than once today. Not because I'm unhappy, absolutely not, but because I feel so incredibly thankful. Mainly for the people in my life who have supported me from day one in pursuing my dream of getting this book out into the world. I'm thankful for my partner James who I adore a little more every day. But most of all I'm thankful for those people trusting in me, buying my book and enjoying it, and TALKING ABOUT IBD. I hope you all enjoy my writing, I hope it sits nicely in your bathroom and most of all I hope it helps to open up conversation about IBD! Which really is the whole point. One of the best days of my life has also given me an incredible opportunity to share my story with the world. I hope it helps you tell yours; even if it’s just to the doctor.

You can buy ‘Go Your Crohn Way’ here or from all good retailers! à https://www.amazon.co.uk/gp/product/1848193165/ref=s9_simh_gw_g14_i1_r?pf_rd_m=A3P5ROKL5A1OLE&pf_rd_s=desktop-1&pf_rd_r=54BGRG8C8B5ESAGM3A23&pf_rd_t=36701&pf_rd_p=867551807&pf_rd_i=desktop

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. 

Flare & Flare Alike

A couple of (perhaps slightly contradictory) things will happen to you when you live with a chronic illness. Not attempting to generalise, but based on my own personal experience, I've established a lot of patients will find they are equally cursed and blessed with both a huge increase in empathy for others, and a huge decrease in tolerance for hypochondriacs.

Neither comes as much of a shock I suppose; it makes sense that we find ourselves feeling more akin to those in health-poverty like ourselves. Or that we will have a much lower tolerance for those who give Oscar-worthy performances of illness when in truth they are fitter than Mr Motivator just back from a week’s holiday on a round the world cruise attached to a TENS machine drinking kale smoothies.

I've established over the years, I'm becoming increasingly 'Hypochondriac Intolerant'. 

It’s a genuine condition. Honestly. 

The main symptoms include; flying into a seething rage at the mention of a cold. Burning up with anger at the mention of how “ill” you are to have been to the toilet more than once in a 24hr period. But the worst, and most dangerous symptom, is the almost uncontrollable urge to scream “STOP LYING, LIAR” at these Hypochondriacs with a Tourette’s’ like regularity. It’s a hard urge to curb.

Heartbreakingly, there is no current effective treatment for Hypochondriac Intolerance. The most sufferers like myself can do, is try their utmost to avoid contact with those inflicted with Hypochondria. They spread their whiny germs quickly and effectively and diseased muther-hubbards like me are often powerless to fight back.

Of course joking aside, pain and suffering is all relative. Your tolerance for pain changes as an illness develops, you get older and your experience widens. For example as a youngster I used to be scared of needles, and thought a quick prick with a syringe was the worst experience of my young life. Then I got my first period and OHBOYOHBOY was that a shock to the system! Literally; I was wearing white pants at the time. 

But THEN I got Crohn’s Disease and I have never felt pain like it. I've felt pain since, and will again, but the agony of having an active disease eating away at your insides is something quite indescribable.

So because my pain may not be the same as your pain, who am I to tell you to shut up when you complain of a sore pinky finger? Who am I to mock you for walking with a limp because you tripped over a one pence piece? 

I’M THE HYPOCHONDRIAC INTOLERANT ANONYOMOUS SUPPORTERS GROUP that’s who and I just made that name up off the top of my head and so far I’m the only member but I’m here to tell you to keep your whining to yourself. Or else.

So tell me, do you feel sickly punk? Well do you?

Ward This Way

If you suffer from a chronic illness, it’s an unfortunate truth that you will most likely be required to spend quite a bit of time in hospital. Perhaps mostly at the time of diagnosis; IBD in particular can be very difficult to diagnose and you may find yourself an in-patient of Ward LETMEOUTOFHERE for much longer than you’d like.

So how best to cope?

As a public service I’ve taken the liberty of compiling a little list of hints and tips to help you deal with with your stay in the world’s grimmest hotel. (Please feel free to add any of your own in the comments!)

1.       Speak up – Don’t play the martyr and suffer in silence. It’s stupid and really helps no one. You may think you are being kind, and the perfect patient by not giving the nurses anything to worry about, but really you are just setting your own recovery back and making it more difficult for them to help you. Diagnosis and treatment are a two way thing – you have to play ball when it comes to doctors’ recommendations. OK, if you are totally terrified, or vehemently disagree with what they suggest then tell them! Or ask for a second opinion. Don’t be afraid to rock the boat; the ultimate aim is getting to the shore safely and with as little disruption to your life as possible. Something about getting coconuts when you get there too look I don’t know.

2.       Prepare and prepare again – You might not assume you’ll have to stay in hospital again anytime soon, but your body (and your doctors) may have other ideas. Although it’s not a nice thought to have in the back of your mind its much nicer when the time comes to know you don’t have to panic about what you will need – or worse fire orders at someone else to pack for you. I previously compiled a list of my top items for my hospital case you can peruse here at your leisure if you so wish : ( http://crohnologicalorder.blogspot.co.uk/2012/05/crohn-fishin.html )

3.      Do as you’re told – Yes you are in hospital to get well, but you are also a guest in the Bates Motel of Misery and as you are there to be looked after you must try and tolerate what is asked of you. Yes, it’s annoying when someone tries to fire dry toast down your gullet at 6.00am after a sleepless night listening to the woman in the bed opposite you screaming blue murder at all hours, and yes it’s even more annoying being shoved in a shower bleary-eyed and attached to a drip, and yes its annoying sharing a toilet with 4 other women with bowel conditions; but none of that is the fault of your nurses or doctors. It’s important you try to focus on what YOU need to do to get better. Listen and try to understand why you are there and what can be done to help. Don’t cock-block the doctor from attempting to medicate you at every turn; you never know they just might actually know what they are doing.

4.       Don’t turn away visitors because you feel embarrassed/a burden – Don’t get me wrong I’ve spent many a day in hospital when the thought of having to smile and chat to friends and family fills me with nothing but dread. But hospital can be a very lonely place, and seeing a familiar and loving face can help massively to brighten up the day. It also gives you something to look forward to and a sense of routine in what can become a calendar wasteland.

5.       Don’t feel you have to be a performing monkey – On the same topic its important you are authentic and true to yourself when loved ones arrive. Yes, its natural you don’t want to cause unnecessary worry, but here’s a newsflash for you: you are in hospital – they are already worried. Keeping how you truly feel from people who care for you is detrimental t your own mental health and is putting up a barrier stopping them from possibly helping to lighten your emotional load.

6.       Biscuits – There are always biscuits. 

Bare Naked Hades

I’m not a massive fan of pale, sickly flesh being paraded across social media. I live in the West of Scotland and see more than enough of that during our 48 hours of Summer to last me a lifetime. I don’t personally see it as a hugely positive awareness tool either. IBD is primarily an ‘invisible’ disease, so I just feel educating ourselves and others on what goes on underneath our skin is more relevant than what our external bodies look like.

The ways in which a chronic illness can ravage our bodies are tenfold, and can be ultimately embarrassing, and make patients feel ashamed. We are often left feeling as though we have to hide ourselves away, so I totally agree that it’s important to de-stigmatize our illness in any way possible. Just personally baring your bits is not for me. I generally don’t need to see more scars, wounds, cannula's or all of the medications you are taking - I HAVE ENOUGH OF MY OWN TO BE DEALING WITH.

With the greatest of respect, I don’t want to read about your stitches and staples; I don't particularly want to see your stomach or your scar. No, I'm not prudish, and no I certainly don’t believe our diseased bodies are ANYTHING to be ashamed of, but I don’t necessarily want to parade mine for all to see either. It’s MINE, and it’s covered in my own history and experiences. It has that birth mark on it I've had since I was first brought into the world, and that big scar on it that serves as a reminder of how I was saved from going out if it. I has that one long toe that I've hated since I first knew what hate meant and it has that miraculous rack that has gotten me many a free cocktail. Only a privileged few get to see these bits, including me, my partner, 2 cats and that man who cleans the gutters when I’m changing and have forgotten to shut the curtains.

Adapting to my body post-diagnosis, and subsequently post-surgery, has been a long and bumpy road and it’s only now I feel a little more confident in baring it in public. But the relief there is that I don’t actually have to. It’s private; in the same way it was before I had a scar and before my stomach would swell to the size of a small house on impact with a potato.


I don’t feel flashing my flesh will help our cause: I think talking openly and without shame will. I think helping those who are afraid to open up about their fears will. I think not shying away from the impact IBD has on our mental health will. I think learning how to conquer our anxieties will. Learning as much as I can about my disease will. Educating those ignorant of our condition will. But again, this is my choice and mines alone; if you want to bare your tum or show the world your bum then the world is your lobster. Just remember to close your curtains when you’re having your gutters cleaned. 

Second Crohn's Citizen

I used to be (and still am to a certain extent), the type of woman who spends [wastes?], a great deal of her time getting wrapped up in the actions of other people around me. I’d worry what they think of me; if they like me, if they think I’m funny, or intelligent, what that certain look or sentence actually means regardless of what they say. This has caused me no end of hassle and confusion at times, mainly in relationships. So you can imagine the additional strain on someone who performs this sort of behaviour, when they have an incurable (and not particularly well known), illness thrown into the mix.

For a good while after my diagnosis I found myself slowly shaking off the shackles of caring too much what other people thought of me. It suddenly no longer seemed of any importance. I was dying, and unless these random strangers were for some reason going to be asked to give a eulogy at my funeral, their opinions had become invalid. I cared about getting well, and I worried instead about my family and friends being sad and confused. I wanted to learn about my illness and help myself and the people I love to understand it.

As I adapted to life with Crohn’s Disease, I claimed back the confidence that had previously been taken by my badly behaved bowels. I learned to get over myself and stop worrying about how people would view my supposedly unsightly scar, I stopped fretting about people misunderstanding my condition and I became confident in my ability to communicate how I felt – through writing and elsewhere.

But more recently, as my mental health has struggled alongside my physical, I’ve found myself slipping back into those feelings that I am on the outside looking in. That I am a second class citizen. It’s a strange feeling, and hard to explain, but I suppose you could say I feel that I am somehow less of a whole person due to my illness. I know that isn’t true. And I would beat another patient who said the same to within in an inch of their lives (with cuddles and soft pillows), but it’s a feeling I’ve felt start to drift back in during the last few weeks. I feel those same feelings of struggling to express myself and am at a loss to convey the complexities of my illness in a few mere sentences. Is that even possible? I doubt it.

The other day someone asked why I was unwell, quite aggressively, not a kind, “are you ok?” but more of a “what’s wrong with you?!” – this was after a day of having tried my absolute utmost to conceal the fact that I felt as though the Grim Reaper was grabbing at my coattails. Which is made even creepier by the fact that I wasn’t even wearing a coat. I felt ashamed and embarrassed to have been ‘outed’ like this; I had to explain an unexplainable illness in under 30 seconds to avoid the social horror of backtracking and pretending I’m fine. The heat was on. Not least on my forehead as my temp was through the roof by this point.

Anyway, I said “I’ve actually got Crohn’s Disease...” but before I could even delve into my brief synopsis of my irritated intestines, I was met with THE LOOK. The Look is difficult to describe, but one professional sick-people have seen many times in their lives. It starts with the glazed eyes of someone who has already decided they are heading straight down BOREDOM FALLS without a raft or life-jacket. It then moves to the vaguely sympathetic head nod, usually at the wrong places, which conveys to the recipient that you-aren’t-listening-to-a-single-word-I’m-saying-you-are-singing-Maroon 5’s-latest-single-in-your-head-right-now. It ends with silence. Painful, uncomfortable, excruciating, Best Man at wedding makes a rude joke that doesn’t land; SILENCE. There’s no way back. You’ve begun on this road and now you have to navigate over the speed bumps.

So what do I do? I try to appease the poor unfortunate soul who is at a loss for words about my disease by reassuring them ‘it’s actually fine, and no big deal, and let’s change the subject shall we? Did you see the game last night, my favourite bit was when the man kicked to the other man then his foot kicked it in the big net’.

But I should confirm that it IS a big deal. It IS a horrible and uncomfortable disease, but all I require from you, as an inquisitive wee soul, is not to assume I am ‘faking it’, or making a diseased mountain out of a diseased molehill. To listen for 30 seconds and maybe learn why it’s a difficult thing for me to talk about. If you struggle to hear it, think about how it feels to feel it. THEN and only then, can we talk about the game where the men kicking their balls into other men’s nets. 

Stress This House

For a few weeks last year I went to see a counsellor. It was at a particularly low point in my life when nothing seemed to be going to plan. I was also struggling with my deteriorating health and trying to come to some sort of mutual arrangement with my disease that would allow us both more of an equal share of my body. (Obviously the end goal was ideally 60 – 40 in my favour but keep that under your hat I don’t want to rock the boat).

During my time with the counsellor, (let’s call her Carol, as that was her name), she quickly established that I was suffering from severe anxiety. She taught me all about the ‘fight or flight’ response; that anxiety at its core is an ‘in built’ response our bodies have to perceived threats. It allows us to do whatever we deem necessary to protect ourselves when we encounter ‘danger’. She explained that the origins of this response date back to ancient times when our ancestors lived amongst natural predators; e.g. a lion approaches looking to eat you, your fight or flight responses kick in and you either punch the lion square in its furry face (inadvisable) or bolt in the opposite direction faster than the speed of light to find a hiding place (more advisable).

Well this hypothetical tale is all well and good, but as I live in Central Scotland where not many lions tend to roam free, it didn’t quite hit home, so Carol elaborated and explained how anxiety affects the body in a more day-to-day sense.

So not many of you may know this, but I have a PHD in science and stuff I received from my studies at the Laboratoire Garnier or whatever, so allow me to share my (and Carol’s) vast knowledge with you.

Here comes the science bit.

So anxiety is like the bodies alarm that alerts you to these perceived ‘dangers’. It then sends chemical messages through your body like adrenalin, which causes your heart to beat faster and stronger, increasing your blood pressure. This in turn moves blood into the larger muscles you use to ‘fight’; many of your muscle groups tense up when this happens. Blood flow is diverted away from your skins surface causing paleness, tingling and cold feet and hands. Your breathing will also change, from shallow slow breaths from your stomach to rapid breathing higher in your chest and this can lead to dizziness and hot flushes. You’ll sweat, your pupils will dilate and your whole digestive system will shut down causing everything from a dry mouth to constipation.   

‘But, Professor Nicholls, how does all of this relate to IBD?’ I hear you cry. Well let me explain. Anxiety and IBD go hand in colon like your consultant on scope day. Ever felt yourself panic and perspire when in a strange place with unfamiliar surroundings and a sudden urge for the toilet? – ANXIETY. Ever been wheeled into the hospital and left in a ward with no explanation of what’s in store for you and your rear end? – ANXIOUS MUCH? Ever been walking to the shops to pick up your prescription when the local lion walks towards you? – ANXIETY OVERLOAD I CANNAE TAKE IT CAPTAIN ETCETC.

Most of our days as sufferers from IBD are spent thinking about our conditions, and anyone with a chronic illness will have experienced anxiety at some point in their lives. If not EVERYDAY, like myself. I am far more inclined to assume the worst case scenario Post-Crohn’s. I’m far more likely to fret about every potential situation that may occur ‘P.C’, and I’m faaaaaaaar more likely to plan every outing with military precision than I did ‘P.C’

So what can we do to combat this invisible menace thwarting our daily lives at every turn?  Here are a few tips from Carol (and myself; let’s not get ideas above our station CAROL), to help swat away the anxiety like the pest it is.

-          - Learn what triggers your anxiety - Perhaps keep a diary of what situation you were in when you felt yourself panic. Establish if there is a pattern to these episodes and allow yourself to plan these encounters better, or avoid them if possible. Is it something you can handle in a different way next time?

-          - Count to 10 slowly - Speaks for itself really. Try 20 if you are Scottish and speak at 500mph like myself. Breathe in and out on each count to slow down your breathing.

-          - Limit alcohol and caffeine - Both can trigger panic attacks and aggravate anxiety. Unless your anxiety trigger is alcohol or caffeine, then we’ll need to try something else, wont we CAROL.

-          - Accept you can’t control everything – Try to put your worries into perspective where possible, is it really as bad as you think? Don’t patronise me, CAROL.

-          - Get plenty of sleep – When it’s stressed your body needs additional rest, try to placate it where you can and get enough.

-          - Talk to someone – Tell friends and family you are feeling overwhelmed, let them know how they can help you. Talk to your doctor or a therapist for professional help. You can even call me, Carol, on 0300 20… WOAH, WOAH! BACK OFF CAROL!

Sorry about that. Carol gets ahead of herself sometimes. It makes me anxious, but I faced it head on and I feel better about that. Wait a gosh-darned minute... Reverse psychology? Carol you absolute genius!

Anyway, hope this little blog-therapy session has helped YOU understand how to beat YOUR anxiety. Hope it hasn’t made you anxious as my writing often does. Carol and I are off to drive off the edge of a cliff like Thelma and Louise; she says it’s therapeutic and not at all terrifying and deadly! She knows her stuff does Carol! 

S

Blue Monday

Ever get that feeling when you wake up and feel what I can only describe as ‘nothingy’? No enthusiasm for the day ahead, no happiness when you see the love of your life lying beside you, not a twinge of joy when you hear your two cats cuddle up to you blatantly toying with your affections for a slice of ham? No? Just me?
I wake up like this more often than I’d like. I’m working on it. I'm usually glad I wake up. I'm relieved I'm not sad, or angry, or depressed enough that I don't want to wake up. I've thankfully never felt that way. But knowing that you don't want your life to be over generally isn’t a massive confidence boost, and doesn't really make it any easier to motivate yourself for the day ahead.

Depression is a strange creature, it’s a ‘black dog’, it’s ‘a chip on your shoulder’, and it’s a motivational Facebook quote waiting to happen. But to me it’s strange, because regardless of how it’s portrayed, it's not always an overwhelming cloud of sadness hanging over you. Its ‘invisible’, like so many chronic illnesses, therefore lots of us can act ‘well’, and smile, and pretend everything is as it should be. When it generally isn’t. We often do that because it’s easier than having to explain how deeply unhappy you truly feel. That leads to several scenarios’ we don’t really have the energy or want to deal with. Here are my top 3.

1.       The sympathetic head tilt...

We all know the one. It’s both infuriating and disappointing in equal measure. It’s also expected and semi-understandable, which makes it even more exasperating when it happens. It makes people with mental illness and/or chronic illness feel ‘babied’ and that we need your sympathy and worse, pity.

2.       The patronising advice…

Please don’t tell people with chronic illness what they should be doing to fix themselves. Although you may think it’s helpful, it’s insulting and patronising in equal measure. Plus believe me, we’ve heard/tried/discounted it ALL before. See also; “cheer up” = worthy of the death penalty.

3.       The obvious boredom…

This refers to the attitude some people have when they become aware we haven’t miraculously ‘got better’ overnight. As we know, mental health issues and chronic illness doesn’t allow for a quick-fix. It requires long-term treatment and adaption, and a little understanding from those around us.

Continual health struggles (mental and physical) can feel like spending everyday wading through treacle. Simple tasks become mammoth feats of endurance and getting a handle on your emotions can be as intangible as me winning the love of Jon Hamm. It can be hard to find the joy in the things which on paper should be joy…full.  When you learn to accept your lot it becomes easier to deal with. To treat your conditions with the care and consideration they deserve, and to be a little kinder to yourself when you’re struggling.

But I suppose this post doesn't really have a nice neat ending like they usually do. That's because life with depression and chronic illness doesn't have a neat ending, or a logical conclusion. There is no ending, just adapting. And that's ok. Because that's the best we can do. 

Dear 'John' Letter

I recently re-read my old diaries (or ‘journals’ if you’re American), from just as I was getting sick, and was shocked to discover how lost and confused I was. I was utterly miserable, sad, raging at the world and my situation. There was also a noticeably marked increase in the use of capital letters and exclamation marks strewn across the pages…

I realised I can’t be alone in these feelings, and that there will be countless others feeling the feelings and overusing the Caps Lock just as I did all those years ago. I decided to write a letter to my pre-diagnosis self. I thought it might be cathartic somehow, like those rituals of ridding yourself of bad juju where you burn photographs of ex-boyfriends and set fire to their homes and cars, that kind of thing.

So here goes:

Dear Kath (aged 24),

This might seem a little bit weird, me writing to you (well, me) like this, but I’m you; from the future. I know, I know, it seems mad right? But I borrowed a TARDIS and blah blah blah whatever works.

Anyway I’m writing to tell you that I know you are having a really hard time right now and that you’re doing just fine. You are sick, angry, sad and everything in-between, but all you are feeling is part of the grieving process. On top of the constant nausea, vomiting, unbearable pain, running to the loo, and the inability to eat/sleep/work, you are also dealing with the loss of your old life. You are stressed about losing everything that is important to you; your relationship, your friends, your job, your dignity. Well I just want to tell you that you won’t. At least not the first 3, the last one is a longer and more trying process.

Stop being so hard on yourself. Stop blaming yourself for this; you didn’t give yourself this disease. Nothing you could have done would have stopped this happening to you. The same goes for your parents; they are not responsible for your illness. I know you don’t blame them, but they might be blaming themselves in some way, so try to reassure them.

You might be focused on the negative stuff right now and that’s understandable – it’s BAD. But you should try, when you’re able, to see beyond this initial horror. Focus when you can on what YOU can do to help yourself. Don’t rage and weep and wail about where you perceive the doctors to be failing, (OK well you can a little but let’s not bankrupt a tissue factory), try and begin to tentatively educate yourself. I promise you it’s not all as scary as it seems. You feel out of your depth and intimidated right now, but trust me, the more you know about your body and this condition the easier it will become. Understanding why you feel the way you do will help you adapt to it. But do be careful not to overload yourself; steer clear of horror-stories and don’t let anyone scare you. It will happen; there is a strange culture of ‘competitive suffering’ within the world of chronic illness so try not to get drawn into that. Focus on your recovery and don’t compare your ‘journey’ [I know you hate that phrase, I do too, this isn’t Pop Idol] with anyone else’s.

As future ‘you’, I really wish I could tell you that life is amazing now, and that you’re magically cured and that Jon Hamm is your husband, but I can’t. I will say that life is certainly better, doctors are still beavering away on that elusive ‘cure’, and Jon Hamm has only taken out 3 restraining orders against me so far.

Look after ourselves,

Love and kittens,

Kath (aged 31 and 11months) 

Remission Impossible

Yesterday I got a little bit of Crohn’s-related good news! Yippee! Long overdue, and the first time I've been able to report anything even approaching happy bowel s in…well EVER.

 The results from my latest Calprotectin sample, (my stool, or poo to the uninitiated) show that my Crohn’s Disease is currently inactive. INACTIVE. This perhaps doesn't sound like much to those of you without the disease, but let me tell you this: for me, it’s BRILLIANT. This is the first time since my diagnosis that my disease has been ‘inactive’. Up until now it’s over-active. It’s never stopped. It’s never been lazy a day in its life. It’s had ADHD. You get the general idea.

To some people they will call this period of inactivity, ‘remission’ or something similar. I'm not sure how I feel about that, mainly because I know I'm not cured. Temporarily or otherwise. I’m not ‘better’ and I'm not ever going to be. In no way is any of that intended to sound negative, because I'm honestly chuffed, but I also don’t want to get ahead of myself and assume the rest of the next few days/weeks/months will be a disease-free breeze. I also don’t want everyone around me to assume the same. I need to be honest with myself and avoid falling into the trap of setting myself up for a sickly fall. I've been there too many times and it’s more disheartening than learning Jon Hamm isn't single.

I also don’t want to be perceived to be unkind or insensitive to those of you who are really struggling at the minute, because I know how hard it can be to hear happy tales when you feel inches from vomiting/destroying the porcelain/death. I’d just like to share my happiness at being ‘OK’ for the first time in my life. That’s alright isn't it? It’s positive. 

It’s something not normally associated with chronic illness as positivity isn't a choice, it’s a trial. 

Living with Crohn’s has always been a day-to-day challenge, every day is uncertain and you generally live under a cloud of anxiety, from the banal of ‘OMG I might need the toilet in a hurry and I’ll be on this bus for an hour’ to the terrifying ‘I really don’t want to die’.

Without exaggeration, I've spent years wondering how to adapt my life to constant pain. I've accepted agony, nausea and everything else that goes along with this illness as part of my new existence and struggled to be normal around it. I've berated myself for wallowing, I've been racked with constant guilt at becoming a cause of worry or even a burden on my family and friends, I’ve had parts of my internal organs removed and I’ve come close to losing my job several times due to this disease. 

What I'm saying is, it’s been really hard, and I'm looking forward to wallowing in feeling OK for a wee while. I don’t really even care how long it lasts, as long as I get to remember what it feels like not to have the bowels of Satan grumbling within me.

So I hope you are all well enough to join me in raising a delicious glass of bowel prep at my little glimpse of happiness! I know I’ll be toasting to all of you! xox 

For Better or for Worse

The other day someone said those three immortal words to me. No, not THOSE words you old romantics, (although those ones are nicer); it was that three words that strike misery and resentment into the heart of every sick person;

“…Could be worse...”

Now,  much like that other ‘three words’; “I love you”, being bellowed at you by a man peering through your window wearing a wig made of your hair as he’s forcibly restrained by police, “could be worse” leaves the person on the receiving end of it feeling a bit dejected and perhaps borderline terrified.

It implies several things to those of us dealing with illness every day, none of which are particularly cheering. In the main these are what I generally hear when someone tells me it ‘could be worse’;   

1.       You could be DEAD so cheer up eh?

2.       There are SOOOOO many sicker people that you out there, so stop making a fuss.

3.       You aren’t sick enough in the grand scheme of things so it’s probably best for everyone if you shut your whining mouth.

4.       Stop being so dramatic!

5.       I’m jealous of you for reasons I can’t work out for myself and don’t fully understand so I’m going to be unkind to you in a backwards way.

6.       I don’t like you talking about your illness in my presence.

Fun eh?! Now I’d venture it’s quite clear to see why that phrase is not at all helpful or encouraging. If that is ever the intention when saying it anyway, (and I’m sure for some people it is!) It’s said as just one of those ‘things people say’ because they are raised hearing it and don’t know what else to risk in that environment. Much like casual racism and jokes about mother-in-laws before it, it’s tired and redundant and should have been exterminated before man learned to create fire. By the way I’m sure it was a woman who gave him the idea in the first place, a man can’t do anything by himself! Eh!  hah ah hha ahaa. You know, that sort of thing.

So, by now you might be saying to yourself, ‘Kath, CALM DOWN DEAR, it’s not the end of the world, it’s just a figure of speech, I mean it could be wors…’

WOAH THERE TIGER.

Just hold that thought before I am arrested for grievous bodily harm. I may be sensitive and somewhat defensive about my condition, and that’s wholly my right. It’s not my right to get all up in your grill about it and preach in a holier than thou fashion about what you should, and shouldn’t say. This is just a friendly offer of advice and guidance in how little phrases which may seem insignificant to you can cause a world of frustration to others. I just feel it’s my duty to remind those of you with and without an illness that words can be cruel and hurtful and minimising something that to someone is a cause of massive devastation, isn’t smart.

When you are being flippant and making off the cuff remarks about someone and their suffering, remember, it could always be worse!

In the boot of a car. At the bottom of a cliff. With no life boat. And no chance of survival.

OK, Love you, bye! xox

Stall That Jazz

I remember vividly the first time I knew (and accepted), that I was seriously ill. 

I was at a gig with my partner, we'd gone to see Gil Scott Heron; my bf was a huge fan and it might have been (and subsequently was) the last time we could see him in Scotland/alive. I felt relatively OK on the way there, I was looking forward to it, but as we stood in the hall and the crowd began to build around us I started to feel a sense of foreboding. It's something I feel a lot of the time in crowds, anxious and an increasing sense of panic; what if I can't get out of here? What if I'm sick? Or faint? What if I ruin the night for him? 

I was feeling claustrophobic and unsteady on my feet, and wondering why in the name of all things holy I hadn't booked us seats instead of standing. I usually can't stand without sitting down for more than about 15 minutes so gigs are often a huge challenge. I usually dance away the fear/nausea but at this type of gig it was more about quietly 'appreciating' the jazz. 

I hate jazz. Don’t get me wrong, I don’t mean hate in the sense of hating brown sauce on chips or when hating it when someone eats with their mouth open; I mean full on, unadulterated hatred. 

I went to this gig with my beloved because he doesn't hate it, quite the opposite in fact, and what is a relationship if not putting yourself through your own version of hell to please someone you love? 

I appreciated I needed to SIT DOWN. About half an hour in and I was feeling awful, major nausea and dizziness. I tried to focus on the man on stage talking/jazzing. I tried to hold onto my bf, feel my feet solidly on the ground and breathe in and out but it was hopeless, before I knew it I was a slurring mess, mumbling to my bf I was about to pass out. 

And I did. 

In the most dignified way possible; in a room full of thousands of people and after having thrown up all over myself. My bf and some lovely stranger apparently helped me out of the crowd and to a First Aider. I came round and was totally disoriented and FREAKED OUT. Where was I? Why did my bf look ashen? Why did I STINK? 

I was at a gig and had passed out and thrown up – naturally the first aid staff assumed I was a drunk/high on drugs/both of the above. They knew I wasn't high on JAZZ that's for sure! hahaha :( 

They checked I was alive and sent me on my way. (Which was back into a sweaty room surrounded by thousands of sweaty jazz loving people wearing berets and flat caps and drinking speciality beers). Because I didn't want to have completely ruined my partners evening, I insisted we stay to watch the end of the gig. We stood out from the crowd so I could get some air and I waited patiently for my jazz-infested ordeal to be over. I stunk of vomit. I had sacrificed both my favourite cardigan and scarf to the bin as they were beyond help. I needed to be anywhere but here. But I stayed. 

We left and walked out into the night, I felt like the Worlds Most Disgusting Creature 2010 and my bf handled me like a china doll, albeit a foul smelling one. 

A few months later I was having life-saving surgery. I am a lot more sensible now; I know my limitations and without sounding negative, I know when to admit defeat. There are things I’d love to be able to do – but there are more days alive I’d like to have than nights out, so one outweighs pushing myself for the other. 

I have also gone cold turkey on jazz since that fateful night, and my ears have never been happier. 

Sweet as a Butt

When you are suffering from a chronic illness, there will be times when you require looking after. This ‘care’ can come from nurses, doctors, your partner, or family and friends. Maybe even your cat. (Maybe all of the above). There will be occasions when you are out of action against your will and you can’t do things as well as you used to. This might be temporary or long term. The way you react to being thrust into the role of being ‘patient’ depends largely on your outlook of your disease and lifestyle.

It can be a hard pill to swallow (often literally) if you are someone who cherishes their independence. It’s something that can be very difficult to adjust to, particularly if being ‘cared’ for is something you haven’t experienced since you were too young to realise it was happening. It can stick in the throat when you are forced to sit back and accept help. On the other side of the coin, some patients relish the pampering. They enjoy being cared for and take full advantage of having someone to order about.

Personally I find it uncomfortable. I don’t like having to ask someone else to help me with what should ideally be simple, everyday activities.

After my surgery, due to my own pig-headed determination to DIY my recovery, I probably set myself back a good few weeks. I showered alone (a MAMMOTH TASK), I made 80% of my own meals (a challenge when you can’t lift so much as a kettle), I walked up and down stairs unaided (well the bannister helped) and generally started to get out and about well before I was ready. Don’t get me wrong; there were plenty of wonderful people around me who wanted to help, and offered their hands and ears to aid me, I was just too rash at turning it down. I don’t beat myself up about this fact, anymore anyway. I know now I was naïve in thinking I was somehow superhuman and that everyone else who’d told me my recovery would take at least 4 months were just wimps who really needed to stop overreacting.

The other potential problem in being cared for is the feeling of loss when said care is inevitably taken away. There will be times when you are well enough to look after yourself – hopefully more often than not – and that can be difficult adaption to make in itself. Suddenly you have to be a grown-up again who relies solely on his/her self. The attention alone can be a habit that’s hard to kick. I mean, much like Beyonce, I’m an independent woman [throw your loo rolls at me] yet I can sometimes feel very alone when I’m ill. I often revert to my childhood and just want a cuddle. I just want my Mum. Pathetic as it may seem, it’s not uncommon. If you are stuck in hospital for any length of time, you are obligated to be cared for. It’s why you are there in the first place; to get better. So strangers will surround you and feed you, medicate you, maybe even clean you. They will change your sheets and wake you up, they’ll tell you when its lights out and when you can and can’t have visitors. They will basically turn you back into a TEENAGER. Therefore it’s strange to be released back into the wild and be expected to do adult things, like pay your mortgage and renew your car insurance. YAWNFEST.

However if, like me, you pride yourself on doing it all yourself because you’re a big girl, then having the care of others thrust upon you then pulled away like several CM of your intestines, can be distressing to say the least. It can cause anger and confusion, and give the feeling of having to start over again and again. In short it’s a bummer when your bum is no longer the centre of everyone’s universe. But although, again much like Beyonce, I buy my own diamonds and I buy my own rings, I am not Beyonce, and in the long term I wouldn’t want my rear end to be the subject of such daily scrutiny.

I’m learning to accept help when I need it and look after myself when I don’t. I still find hospitalisation uncomfortable but a lot of that probably comes down to how I perceive it; having a ‘don’t help me’ attitude doesn’t go down too well in the very building MADE FOR HELPING. The bottom line (pun always intended) is to find your own happy medium. Don’t play the martyr, take assistance when you require it, but don’t lie down to your disease. Fight back when you can and don’t play the victim. It’s an easy trap to fall into. Also if someone offers you chocolates and/or flowers; take them; if you are allergic to chocolates and /or flowers, I’ll take them. I’m caring that way.  

Diseased to Meet You

About 6 months ago I went to see the doctor. Not an unusual activity I hear you cry; this is a blog about chronic illness after all. However for once this visit wasn't Crohn's related.
I went to see him because I'd been feeling pretty low for a good while and felt I needed to do something about it. I’m very proactive in the upkeep and management of my physical health so I decided I should take my own advice and adopt the same attitude with my mental health.

I told my doctor I suspected I had PMS due to the regularity of my mood changes, my cycle, and that it appears to have gotten worse as I've grown older, and also oh my god I shouldn't even be here this is so stupid I'm just wasting your valuable time etc etc.
He told me to stop being silly (in his own words) and asked me a few questions. Before I knew it he'd put me on a course of anti-depressants.

I left the surgery and walked out into the snow with a prescription for anti-depressants when I'd pretty much expected to be gently but sternly reassured I was just feeling the same blue moods every woman feels from time to time, and to be trotting happily into my new stress-free life.

NOPE.

We had a brief discussion about the possibility of my moods being caused by PMS and he listed the regular solutions to this issue (all the birth control I can't take thanks to my Crohn's meds and some hippy remedies to try instead to alleviate my devilish hormones). All to appease me however, as he was adamant this wasn't the case. I was confused, and dare I say it, depressed; to learn that whatever I'd said in that few short minutes led him to think I needed this course of action over simply pulling my big girl pants on and getting on with it. That’s what we British do isn't it? Drink tea, queue, cough and get on with it? Mind you my Doctor is Irish working in Scotland so maybe he’s less stiff upper lip about the whole thing.

I wasn't depressed, I'm NOT depressed. Am I? I'm not someone who takes anti-depressants. That's for other people. People I know and people I don't, people who feel low at times, struggle with anxiety, get stuck in a funk and need to give their fuzzy brain a bit of help…oh hang on; ME, THEN.

As soon as I was about 10 yards away from the surgery I felt guilty. Guilty for assuming the exact thing that I berate others for; lumping people together in a deranged list based on their medical problems. I hate being singled out, or worse, avoided, simply because I have Crohn's Disease, so what gives me the right to assume what 'type' of person should or shouldn't be depressed? It’s a label I realised I’d give people off the cuff and a phrase I'm ashamed to say I used too readily.

I write a lot about how important positive mental health can be in coping with chronic illness, so why was I so averse to trying something that might help mine? The doctor himself said it's not uncommon to have these blue moods when you have so many symptoms, and feel so unwell most of the time, but somehow that wasn't a comfort. It just reminded me that others in my predicament may be feeling low and struggling and finding it hard to see a way out. It felt as though I had to face another unfortunate truth that maybe these feelings won’t just pass without a little help. I wallowed for a while and put it off and focused on my Crohn’s treatment. I felt the same, if not worse as things progressed.

So, here I am, 6 months later, and I’ve got my prescription! (Baby steps here..) I'm happier to admit now when I'm not always happy, and ready to feel better. 

As with accepting my Crohn’s diagnosis, I know that I’m not admitting defeat in receiving help; I’m helping myself. 

Sitting back and waiting to get ‘well’ never ends.. well. So I’m opening up to the idea that there’s nothing wrong in feeling this way; I’m low and need to get a lift back to the top. Where I belong. See you there!