Reelin' In The Rears

It’s that time of the year when we begin to reflect on the past 12 months/drink too much/worry about not having anyone to kiss at midnight/contemplate suicide. Depending on your viewpoint, this ‘reflection’ can involve getting drunk and internally screaming THANK GOD THAT’S OVER (usually my favoured option), or perhaps fondly remembering what has gone by with affection and gratitude.

For me, this year has been difficult, stressful, painful, and WONDERFUL.

2015 began, as most years do, in January with me having been nominated for 4 WEGO Health Awards. I made Finalist in two categories! Beyond my wildest expectations and an honour to be listed among some amazing health advocates!  It was also a joy to see some of my favourite IBD writers take prizes. Very proud to be amongst others raising awareness on such a grand scale.

This past 2months I’ve been nominated in the UK Blog Awards, and for Healthline’s Best Health Blog of 2015. A thrill and a lovely end to a busy year! I don’t expect to win either of these as they are fiercely fought contests, but again I am delighted to be listed amongst such talented individuals!

In May I started my Infliximab treatment. This is the first biologic treatment I have been on, so naturally I was very apprehensive. After bombarding my IBD nurses/consultants with a million and one questions I braved my first infusion. I always prefer to be independent around my health but this time I must admit I was afraid and felt alone. However the treatment has proven successful and is keeping any active disease at bay. I am still floored from time to time and struggle in the weeks leading up to my infusions but so far so good. I understand this intestinal bliss won’t last forever, but I am enjoying it while it does nevertheless.

In August my lovely Mum turned 70! We celebrated with a lovely lunch together with my brothers. She is as vibrant and full of life as she was when I was a child and I am proud to call myself her my friend as well as her daughter.

In September my beau and I celebrated 10years together. A decade with the man I love. By no means has our relationship been a smooth ride, but who can say spending 10 years with someone ever is? Love changes and grows as you get older and I adore living through that with him. 

In October, after a long hiatus due to fear of rejection, I finally started to receive responses from my having sent away my finished manuscript. My book on my life with Crohn’s Disease  was accepted by 3 publishers and I’ve signed with a fabulous and friendly publishing house who are planning to release my book in Summer 2016! I am still in shock to be honest. Every step of the process is more intense and exciting than the last and I am relishing being such a close part of the books’ development. So thrilled for you all to read it – my life and bowels are in that book, and messy as that may sound, I hope that helps even one of you in dealing with your own defunct insides.

In late December, we added a new addition to our growing menagerie (of two humans and two cats) – a massive dawg. His name is Lucky and he’s had a tough old life for his mere 3 years. He’s the softest and sweetest dog on the planet and that’s coming from a well-known cat lady. We are going to give him a great future in a happy, loving home.

So as I head into 2016 I have lots to look forward to and lots to keep me pushing forward. Thanks to all of you for your continued support and love, and know that it’s reciprocated fully. But please, one more restraining order and I’ll be arrested. Happy and healthy New Year to you all, I love you! xox

Bowel at the Moon

[Names have been changed to protect the identities of (potential) murder victims] 

Dear Sir/Madam, 

Actually, scrap that, let’s go with To Whom This May Concern.

I’ve always hated 'Madam' if I’m honest. When people refer to me as Madam it makes me feel like I'm 80 years old. Or an owner of a brothel. It's just a personal dislike. It doesn't make me want to slaughter the person who says it; lots of other women/brothel owners love it I'm sure. But as I do dislike it, I'll inform whoever says it of that fact so and we both move on. Easy as that. 

Explaining you have a bowel disease; apparently not so easy to move on from. 

The reason I’m writing to you today is because it’s become apparent that you just don't ‘get it'.

By ‘it’ I of course mean my chronic illness. You say you get it. Sometimes your actions even show me that you understand.

But you don’t.

If you did, you wouldn’t question me. You wouldn’t make me feel small for something out of my control. Something that already makes me feel weak and worthless a lot of the time.

Me, I regularly profess I don't want, and never have wanted, any special treatment for my condition. But, (and it’s a big but here); I would VERY much appreciate some allowances - if you're unsure what I mean by that then perhaps consider the same allowances you would afford a man/woman in a wheelchair for example. You would undoubtedly appreciate they'll more than likely need to use a lift, or an accessible toilet, and you’ll therefore allow them unfettered use of said facilities. You wouldn't question why said wheelchair-user may take a little longer than your average Joe/Joanne to use these facilities, because well you can SEE that they are disabled! It's obvious! Plus it would open yourself up to a nasty lawsuit/grievance/public humiliation, and you wouldn’t want that.

You might even be accused of being ‘disablist’. Imagine it – You, versus a man/woman in a wheelchair. You’d be publicly shunned for your disgusting prejudices. You’d be vilified by your co-workers. You’d feel powerless and helpless to explain how you truly feel despite initial appearances.

Which brings us neatly back round to the point of this letter.

I’ve suffered from Crohn’s Disease now for over 6 years. It’s been established I’ve probably had the condition since I was very young, it only came to the fore when my symptoms became unmanageable. The reason I mention this is that I’ve felt my body was ‘wrong’ before I really knew how it should perform. I’ve felt I’ve had to justify why I feel certain ways for as long as I can remember, before I knew why myself. So when I finally did establish what was eating me up from the inside out, it was a relief. A massive mystery solved and confirmation I wasn’t imagining it – I was different. I AM different.

You haven’t had that same time to get used to the idea. That’s fine, I understand that and I of course make allowances for that. I try to keep you informed of my condition and ensure I follow the rules of a sick person to a tee. I don’t ask for anything more than a little understanding. I don’t expect you to suddenly gain a PHD in bowel disease – I haven’t.

But I do ask that you listen, and try not to judge based on your own experiences, or worse, on looks alone. Doing these simple things is truly one of the biggest compliment you can pay us.  

So when faced with someone, like me, with an invisible disability, please try to remember that we are struggling. I am not exaggerating when I say that every day is a struggle. It’s incredibly hurtful to feel demonised through no fault of your own.  Because you can’t see me rolling up in a wheelchair or bandaged up like a mummy, doesn’t mean I am ‘well’. Especially when I have repeatedly told you so.

Because you can’t see my illness, doesn’t mean it isn’t there. It’s with me every day of my life. You only have access to a tiny snippet of that life, please don’t make it any harder than it has to be.

Yours in love and kittens,

Kath xox

This Is How We Do It

In living with chronic illness, a phrase you may often hear from outsiders is “I don’t know how you do it!” This very phrase was said to me a few days ago and it got me thinking, ‘how DO I do it?’

The ‘it’ in my case is Crohn’s Disease. More specifically, the ‘it’ in this aforementioned conversation was a colonoscopy. ‘Doing it’ in the case of attending hospital, getting treatment, undergoing surgery and all the other nasty asides to living with IBD are really ‘done’ without much thought to be brutally honest. They are unfortunate necessities. A part of my life I really have no say in. My body makes the rules and I just obey them.

In terms of the fear and loathing of Crohn’s related activities, I’d say that definitely dissipates over time. Although some I do certainly dread more than others (e.g. bowel prep, getting a camera fired up my backside, blood tests in spent veins and having my stomach opened up to name but a few). The ‘fear’ of undertaking all of these things lessens over time and experience (certainly for me) but doesn’t ever disappear entirely. I think that’s entirely natural. Much like walking home alone in the dark, I don’t fear it until I’m ‘doing it’. And even then I have a rape alarm and umbrella on hand in case of danger – luxuries I’m rarely afforded/allowed in hospital.

I like to think I’m pretty independent in terms of dealing with my own healthcare. I talk about it openly on here of course, but not as much as I probably should outside. That’s more out of ‘fear’ I suppose; fear of upsetting the people I love and unnecessarily worrying them. Although I often wonder what my limit is? How ill do I get before thinking it IS ok to make it known? They have already been through so much due to my illness that it almost feels selfish to open them up to more pain. But not talking can be just as damaging – so it needs balance – not allowing my illness to overwhelm me and allowing other people to help lighten the load can make me and my loved ones feel better. They feel helpful in a generally helpless situation and I feel less alone. Of course ‘doing it’ with others is always infinitely better. (Stop sniggering).

So how do you do it? Just start by putting one foot in front of the other, every-day. If you stumble, let someone take your arm. If you happen to ‘stumble’ outside Jon Hamm’s Hollywood mansion and he has to lift you aloft singing Up Where We Belong then nurse you back to health, spurring him onto proposing marriage, then even better. 

It's the Most Wonderful Time of my Rear!

Not being American or Canadian, I don't tend to 'give thanks' for things at this time of year. I'm Scottish, so I tend to see the negative in life 99.9% of the time, and my default facial expression is one of disdain. I exaggerate of course (although only slightly). But in general, in the UK we are renowned for looking on the gloomier side of life. 

Is that the fault of the 'gloomy' weather? 

Is it the government? 

Or perhaps it's the soul-crushing disappointment we feel, stuck in jobs we hate day in day out waiting for the sweet relief of death to take us? 

Or maybe it's all of the above?

(What was it I was saying about us looking on the gloomier side of life..?)

But as I approach the end of another year, I've decided to try something novel. I've opted to attempt to waltz into 2016 with a click of my heels and a bag filled with the happy memories I want to keep going forward. I want to take some time to reflect on all the good in my life. I'm not going to make resolutions; I don't really see the point - mostly they just make me feel like an underachiever when I inevitably break those 2 weeks into the New Year. Plus, my heart breaks for all the gym staff laid off after February due to lapsed memberships. 

So what am I thankful for?

I'm thankful I'm still alive, and for the doctors and nurses who help me stay that way. 

I'm thankful for the man I love and my family and friends. 

I'm thankful for cats. And Jon Hamm and James Spader. 

All of those things make me happy in their own unique and wonderful ways. This year I'm also thankful for my treatment: Infliximab. This is my first year on a biologic treatment and so far so good. Thanks to these infusions I'm not in pain every waking minute! I'm 'better'. Like any Crohn's treatment it's by no means a miracle worker, but despite a bumpy start, it's certainly doing the trick for me so far. And for that I'm very grateful. 

Having an incurable illness and trying something new can be incredibly daunting. It's essential to stay as well as possible and for me that means finding the right treatment and sticking to it. Deviating from workable medicine is dangerous and life-threatening. (Special shout-out here to the daily emails I receive telling me Aloe Vera/ Manuka Honey/ Paleo Diet /etc will cure me - you are the anti-Christ but I do so admire you're perseverance!)

I'm also thankful to the amazing publishers who have taken a chance on my writing and are through some miracle choosing to publish my Crohn's book in 2016! Potentially theeee most exciting thing that happened this year, aside from that night Mad Men AND The Blacklist were one in one night. This book is exciting as it has both made me feel more confident in my own abilities, and is granting me the chance to help others on a wider scale. I know I would have welcomed the opportunity to learn about living with my illness when I was diagnosed and terrified - I want my book to do just that! (Not terrify, help I mean. Although I do talk about my rear-end quite a bit so the first point may also be applicable).

I'm also thankful for all of you. Wherever and whoever you are. You take the time to read my ramblings and for that I am VERY grateful. I promise to untie you and remove the cocktail sticks from your eyes on New Years Eve. 

So Happy Christmas to you ALL! Let's raise a delicious glass of bowel prep to a Happy (and healthy) New Year! X

Every BODY Hurts, Sometimes

“Everything” - was the am-dram response I gave earlier today to the question, “What hurts?” from a friend. It may sound dramatic and borderline bullshit, but at the time it was a frighteningly accurate description.

Allow me to set the scene: I’d eaten some lunch; nothing wild, no endangered species lathered in butter, no sizzling spicy concoctions. Just some chicken and some salad. Oh and a bit of potato too, but even then I only ate the inside, leaving the skin as I know it destroys me. So, a boring, but non-hazardous lunch – YOU WOULD THINK. But you’d be WRONG. And you can tell how serious I am because I AM USING CAPSLOCK.

Today ‘everything hurts’ is an accurate portrayal of how I am feeling. Boring lunch or no boring lunch.

My bones and muscles ache. My stomach is cramping and pained. My head is splitting. My eyes are itchy.

MY HAIR HURTS.

The list goes on. (But not here, and not right now, because I would like to retain at least some readers by the end of this post). The reason I’ve taken to my blog to electronically whine about all of this is because answering that question today and feeling like a drama queen stressed me out. It frustrated me that answering questions on my disease honestly, often has such dire consequences; even in my own head! I know I am not lying or bending the truth yet I can still feel like a fraud saying it out loud.

How is it possible to feel pain, and then feel shame when audibly expressing it? (I suppose ‘shame’ isn’t the right word; maybe frustration?) A feeling that happiness, and ‘normal’ conversation is thwarted by a constant nagging pain. Crohn’s is that annoying boy who used to pull on your bra strap, or that puddle you step in with suede shoes on. Always putting a dampener on daily life.

It’s possibly the raised eyebrows and the perceived doubt from others imposed upon us when we convey our illness. We look fine after all. I can’t even really blame people for this doubt; I sometimes look at myself in the mirror and even though internally I feel like Satan has set up home in my intestines, I still look a million dollars (well… maybe a tenner). That alone can have even the most diseased women doubting their symptoms. We learn to question our every twinge and hold off from seeking help because ‘it could be worse’ or ‘it has been worse’. But that can also be dangerous.

If we are struggling we should vocalise it. Not to doubt ourselves, or accept doubt from others, but to trust our gut. Even if it’s the gut causing all the drama in the first place. 

Day 3: #7DaysOfIBD

Day 3:

Well firstly, It’s been an exciting few weeks for me, as I've recently signed a publishing contract for my first book! I am still in shock that it’s really happening. The pessimist in me is still waiting for it all to go wrong but I'm trying to live in the moment and ENJOY IT.

It’s on Crohn’s Disease and is designed around my own experiences. I hope it helps someone like me. I know I certainly would have benefited from something practical and light-hearted when I was diagnosed. Everything seemed so bleak and hopeless. I was bombarded with information (and worse, misinformation) and medical facts and figures that were impossible to take in. But nothing on how to cope day to day. After the initial shock of finding out what was wrong with me,I was still at a loss as to how to ‘live’ with my new disease. I'm hoping that my writing will help at least one person in the same situation.

But I'm not here to plug my book! (Which will be available in mid 2016 ;) ) I merely mention my news as it serves as the precursor to my update of the day. In my whirlwind of nervous excitement and celebration, Crohn’s has snuck up on me. I've been absolutely loaded with the cold for what seems like months now, and my immune system is at an all-time low due to my current Infliximab treatment.

I'm finding this week a struggle and am floored with exhaustion. But the light at the end of my colon is my good news. This is a rare occurrence and although in living with, and writing a book about my disease it’s been my every waking thought, it’s nice to sometimes forget. IBD makes that harder than you think. Almost impossible on days like today when I feel so tired of it all. 

I have to force myself to focus on the good in my life and rest where I can. I hope all of you are able to do the same today my friends! xox

Day 2: #7DaysOfIBD

Day 2: 

Woke up in a lorryload of pain today. My BF who is currently on holiday, offered to nurse me/do unmentionable things to me if I sacked work and stayed in bed. Unfortunately I am a sucker for punishment and don’t want us to lose our home and cats so grudgingly went to work instead. 

It’s going to be a hard day; excruciating pain at my desk makes it hard to concentrate on the job at hand and slapping on a smile is easier said than done. It can be practically impossible to grin through pain. You can't focus on little else. And don’t even start me on the fatigue! No amount of sleep is ever enough. So when your colleagues arrive and complain of how 'tired' they are, it can often be a major tolerance tester.

As with most days I’ll have my daily dose of ‘suggestions’ on how to best treat my disease. Before 9.30 yesterday I was suggested Manuka Honey and Aloe Vera. On both occasions I smiled and said “well if it works for you that’s great” then silently considered all the ways in which I would gut them and bury them under my patio if I could get away with it/had the stomach for it.

Being offered suggestions on what we should and shouldn’t do is a common aside in living with IBD. What we eat is watched and judged (“should you be eating that?”), how often we visit the bathroom is monitored (“you were away a while…”), how we look (“well you look ok…”), and how often we are unwell is pressed (“but you were sick last week…”). Those are just a few of the enquiries we encounter on an almost daily basis.

Some of these comments can come from loved ones though, and in almost all of these cases; said with care and concern. On the whole I try to remember that the majority of people proffering advice on my illness are doing it with good intentions and a good heart. I'll try to remember that later today when I'm water-boarding them with Manuka Honey.

Day 1: #7DaysOfIBD

This week, from the 1^st to the 7^th December it's Crohn’s and Colitis Awareness Week. It sometimes seems strange to me that there needs to be a week/day/month to raise awareness of IBD. It's such a huge part of my life now that I can barely remember what life was like B.C (before Crohn’s).

Then I recall my diagnosis all those years ago, and the first time I heard the words 'Crohn's Disease'. I didn't have the first clue what it was; so I know I have to appreciate i'm far from alone in that. There are still people who, when I disclose my illness to them, look at me blankly and with utter confusion as I once did towards doctors. What is this Crohn's that you speak of? And can you explain it in language I might stand a chance of understanding?

There are also those who have heard of it and rather than questioning those in the know, instead have come to their own (generally incorrect) conclusions about what it entails. That's why raising awareness is so important. 

To educate and encourage a dialogue around a debilitating and 'invisible' illness. 

So this week I'll be blogging in a diary style, focusing on how Crohn's affects my day to day life. (Often more than I realise when I take a step back and focus on it). 

Day 1: 

Life feels pretty good right now, I'm happier and more content than I've been in a long time. This is delicious to admit because it's been a particularly testing year and a decidedly difficult few months. I'm glad to feel as though I'm finally coming through a black cloud. I have lots to look forward to and lots to keep me occupied.

Therefore Crohn's likes to remind me it’s still around by stabbing me with abdominal pain whenever I'm even mildly stressed. Like an annoying ex it rears its diseased head every time things are good, if nothing more than to remind me that although i'm fine now, things can still be baaaaaad. [Side Note: for clarification none of my exes are 'diseased', that's all me].

Winter is also a tough time for IBD patients as the cold badly affects our joints and muscles. I have Crohn's-related arthritis and my knees and hands in particular seize up and hurt at the end of/during each day. I fully expect my hands to look like claws by the end of this post for example. 

For a supposed invisible illness Crohn's can make itself so visible that it's almost impossible to forget about. But that's OK. It's just a pleasant reminder that it can't and won't stop me being happy. You may take my bowels but you'll never take my freeeeeeeedooooooom! 

I Myth You

I’ve suffered from a variety of chronic illnesses for quite some years now. Most specifically Crohn’s Disease and Arthritis. These conditions can be incredibly debilitating and affect every aspect of my life. I also experience extensive nerve-damage, regular migraines and a whole host of other, less obtrusive health woes. I’m a walking wealth of medical knowledge thanks to these problems and my handbag rattles more than a crèche full of babies with… rattles. Yeah not my finest work but I’m tired. Oh, yes did I mention the extreme fatigue?

As it’s incredibly wearing being poorly 24/7, it’s an unnecessary irritation when we are somehow perceived in certain ways due to our conditions. We can become patients rather than just people. For people on the outside, nothing has changed, but to us it can feel as though we have been altered beyond comprehension.

So in that vein, here are a few myths about people (like me) with chronic illness, which I’d like to debunk. I’m like those ‘Myth Busters’ but morphed into one handy female package; with less facial hair/male genitalia.

1.      We don’t actually enjoy being ill: Strange as it may seem, illness and all that goes with it is no fun. If we could choose to live healthy normal lives, I can guarantee you that we would. As I learnt from being the lanky girl with no breasts and a penchant for Star Trek at high school; being the odd one out is no barrel of laughs.

2.      Taking time off from work is a stress not a skive: Missing work is often a necessity due to unruly symptoms/hospitalization, and is a major worry when we are forced to lose our income due to issues out with our control. Many chronic conditions are also exacerbated by stress, meaning that putting ourselves in situations where stress breeds, is genuinely dangerous.

3.      We are not exaggerating when describing our symptoms: In fact we are probably minimising. That’s not big or clever by the way, but often our tolerances are different to non-poorly people. For example I’ve had a cold for around 158612574651254 years now and it’s just an annoyance, but for a ‘normal’ person that may be a reason to miss work and mainline Lemsip long into the night.

4.      We don’t want special treatment: You may see us ‘get’ ‘things’ such as additional breaks at work, or disabled badges, a free flu jab, or even just a great deal on loo roll. We don’t ask for any of these things (well sometimes we do because we have too). There is no need to be envious of this – we don’t actually enjoy missing a few minutes work because we are cradling a public toilet or resting a flushing face on a cold floor tile. If I were looking to get a freebie thanks to my illness it’d be chocolate flavoured bowel prep! Amirite?! No, probably not.

5.      Its frustrating having to justify something you don’t have any control over: This is a common aside in living with chronic illness, particularly with the people who either pay your wages or are responsible for your treatment.  With employers it can be intimidating having to explain your actions, when really you often don’t understand them yourself. This was a major difficulty for me prior to diagnosis when I was desperately ill and almost lost my job several times. We understand it is vital that the people we work for have all the facts so they can decide how best to help us thrive at work, but often that crosses a line into accusation which can set our confidence back majorly.

6.      We just want a little understanding: We don’t want to be singled out due to our conditions, and we don’t want to be looked at with pity or distain. If you don’t understand what we are going through then just ask, on the whole we are happy to talk about it. The more we do the more people will grasp a difficult and complex disease. You don’t have to read a medical journal cover to cover, just be there to listen every now and then. And bring Nutella. And kittens. Other than that, just you. 

Life, Oh Life

Last month was Suicide Prevention Month. I neglected to post this back then because I was feeling raw, sad and angry myself, about the fact that (much more recently than I’d like), more than one of the people I love most in the world have considered suicide. I feared that because of this I would write something I’d regret later, consumed with panic and sadness.

But those people are still alive as I post this today. And that makes me incomparably happy.

I'm saddened to admit that in my 32 years on this earth I've had more than one friend tell me they wanted to die. Not in that melodramatic “kill me now!/arrrgh I wanted to die!” language that we all use when dramatizing the most inane of situations; but that they genuinely didn't want to live. I've known people who have gone further and attempted suicide, and even worse; those who were successful in those attempts. Every time my heart has broken a little bit more – not because it hurts to think of the grief losing someone would cause me (although that in itself is horrendous); but because I feel an utter failure as a friend. I've struggled to grasp how I haven’t seen someone sink so low, and felt powerless to stop it from escalating. My heart has broken for someone I love feeling so lost and hopeless that they can see no way out. 

I know many people who consider suicide a selfish act. I probably have too, at one point or another in my youth, so I'm by no means saintly here. As a child I heard someone call it ‘attention seeking’ – I couldn't grasp that; how would they know they've gotten the attention they had craved after they are gone? Will whatever deity they believe in fill them in on how many people are grieving? Do they win some holy raffle if the act of ending their life has led to the outcome they wanted? What then? A slow hand clap at the pearly gates?

Everyone who wants to take their own life does so for their own reasons. I can’t begin to generalise and I would never make any sweeping judgements on their motives. But I certainly do worry that the belief that suicide is a selfish act is incredibly damaging, and shows a startling misunderstanding (and ignorance) of mental health issues. It only serves to insult the departed and I believe does more harm than it could possibly do good.

Don’t make someone’s anguish about you.

Personally I currently believe no problem is insurmountable. I know that may sound naïve (and it does). Because I don’t always feel that way, and I know how utterly overwhelming depression, pain, grief, sadness and hopelessness can feel. Right now, today, on a good health day, with a washing done, a shift under my belt and two cats to cuddle, I feel anything is achievable and that anything can be overcome.

But then I don’t feel depressed and hopeless right now. 

That’s the mystery of life: no one feels one way all of the time. Things happen and they change people; sometimes for the better and sometimes, well not so much. My illness changed me and has left in a position where I’ll be forced to fight for my life until the day it ends. That has left me with a different outlook; sometimes negative but hopefully more positive. I want to live, and I want to be well. I appreciate I am not in control of the latter but I most certainly am, the former.

I myself am well aware I am but a tiny and insignificant speck on this massive floating ball we call a home. In the grand scheme of humanity I am a tiny ant. But not to some people. To some other tiny ants I am everything, and I somehow make their lives a little happier just by existing. How incredible is that?! We all hold the power to make another person happy just by being alive! There are ‘ants’ in my life that I love so dearly I could sob with excitement just to see their face after a long time apart, grin from ear to ear just being near them, laugh until I can’t breathe in their company and miss even when they have barely left my side. If we continue with my any analogy then these are the people I would never want to see crushed under someone’s muddy boot. 

I don’t want to offer up any solutions to the horror that is suicide, because I am nowhere near qualified for that – and mainly because there are no one-fits-all answers. When you see someone you love struggling, reach out to help where you can. You have no idea how massive what you may feel a minor effort can be. If you don’t see them struggling; don’t torture yourself that you should have. We can’t always save those who don’t want to be saved. That’s not in any way OK by me, but its life. It can't consume yours. 

The world is a horrifying, challenging, overwhelming and cold place at times, and kindness is a coat we don’t tend to wear often enough. Let’s help one another into it; one arm at a time.

Body Balks

‘Body-shaming’ is big news these-days. It’s a long-standing issue of course, dating back to the days when we used leaves as underwear no doubt. Although if you come from my local area that was only last month. Men and women alike have always been portrayed in certain ways in papers, magazines, on TV and on film. We are supposed to look flawless 24/7. If not we are doing something/everything wrong. We are supposed to preen/starve/paint ourselves to fit the image we see all over the media.

It’s not REAL. It’s not possible.

The world is filled with vanity, where beauty and perfection are portrayed to be everything. Thankfully nowadays more and more women (and men) are speaking out on the incorrect ways they are depicted in the media. Pleasant news, as if we were to attempt to keep up with them it would be a full time (and decidedly un-fulfilling) job. One made harder still when you have a disease like Crohn's.

IBD or any chronic illness, and can change your entire body (and attitude towards it) in a mere matter of hours. When I'm in the midst of a flare-up the disease affects my hair (making it dry, thin and fall out in clumps), skin (dry and sore), makes me bloat to beach ball proportions, gives me hot flushes, makes my face chalk white and makes my body ache all over. You can imagine why it’s pretty difficult to feel confident and attractive when all of that and more, is going down.

Women in particular, have beauty shoved down their pretty little throats everywhere they turn. Sex and supposed 'perfection' sell everything; a gorgeous model in a slinky dress will be used to sell anything from a new Audi to a tube of Anusol.  And we are designed to lap it up. Well of course we are; these women are far more beautiful than us, so logically if we own that product, we too can be just as beautiful. It makes perfect sense! If you choose to ignore the airbrushing, and make-up artists ad hairdressers and personal trainers who all help make this perceived perfection possible. Despite knowledge of all of this, we still continue to put so much pressure on ourselves to look, dress, and act a certain way in order to feel accepted. Usually by people we don't even like.

None of it matters. In 50 years I very much doubt how good I looked in that Instagram filter will matter to me too much. (Mainly because I’ll be dead long before then; I am Scottish after all). But also because my health, and my self-esteem are what matter. I want to be known for being confident enough to express myself, helping those who are less fortunate than me and complimenting a beautiful woman rather than berating and secretly envying her.

In living with this disease I know I will never be conventionally 'perfect'; and that’s FINE, because such a thing doesn’t exist. But I am unique; for example I have a jazzy scar down the front of my stomach; leftover as a memento from where an amazing woman (I'm sure with the help of some excellent male nurses...) saved my life and removed a really, really ugly bit of me.

That can only be a beautiful thing.

Write On, Write Aff

Here in Scotland a common phrase one may use when they are perhaps hungover, ill, or just generally looking an absolute mess, would be; “Whit a total write aff” 

[translation: ‘What a complete write off’: not currently fit for purpose]

In living with chronic illness you will find yourself feeling and looking like a ‘write aff’ more often than most. I've had a good few 'write-off' days recently. Those days where you find, thanks to illness, all your plans are out the window whether you like it or not. You are floored. Work is a mammoth undertaking; in fact much more than turning over in bed is nigh on impossible. Plans made are cancelled, friends and family are let-down and housework builds up around you faster than cat hair on a silk blouse. (Speaking from experience there obvs).

On my recent series of write-off days, I missed a day of work and spent around 3 full days in bed. Today though…I got out of bed! And even showered! I'll wait for the applause to die down then I'll continue. 

Celebrating small victories is a common aside in living with chronic illness. It may not seem much to praise ourselves for, but it’s important, as we spend so much of our time internally beating ourselves up for what we are missing out on or unable to do for ourselves and others. It’s incredibly frustrating being ill. So, SO many wasted hours. The guilt at missed work, the annoyance at letting those you love down, and the pain and misery experienced when riding the wave of debilitating symptoms.

What I've come to realise though, is that self-care is very important. No, I'm certainly not saying that knowing how vital it is to look after number 1 makes the guilt of missed work or cancelled plans any easier, because it doesn't. Mores the pity. However it’s the sensible thing to do. Always the most boring I know. 

The more in tune you become with your own body the more you know when something is wrong, and the more you know when it’s time to take a step back and let yourself rest. If you manage a little work, or complete a menial task then well done. Just don’t break yourself in two trying if you don’t have  to. 

Learning to take the time you need to recuperate will always be more important than doing the dishes or hoovering the carpet. Besides I've been "unable" to lift the hoover since my last operation, and I intend to ride that particular wave for at least another 12 months. As far as my other half is concerned, hoovering is a ‘write-aff’ ;)  

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.

Cistern of Mercy

Whilst having a cupboard clear out, amongst old gig tickets from cringe-worthy bands I pretended to like to impress boys, countless, countless love letters, and 20odd years’ worth of birthday cards, I found my old diaries. I’ve kept a diary since I was around 14 years old. It’s been a confidante through my teens, a comfort through my twenties and a cause of major hilarity and heartbreak years later.

At the end of a year I tend to hide my diary away. This tradition probably stems from the happiness at the closure of a perhaps below par 12months, and the nervous excitement of starting a new one. But today as I came across my own past written in scrawled biro (with notable devotion given to CAPS LOCK), I lingered on 2010, and the year in which I learnt I first had Arthritis, followed swiftly by Crohn’s Disease.

As I fingered through ‘myself’, err my words that is; I found myself crying and cringing in almost equal measure.  The first few months of the year were spent in compete denial there was anything wrong with me, despite all the evidence pointing otherwise. As I noted hospital visits, pain and toilet peculiarities, it was all done with a matter-of-fact attitude that after a while whatever it was would be fine.

‘Fine’ features a lot in 2010.

Reading all of this back now makes me feel almost embarrassed for my 26 year old self. She had NO IDEA what was to come, and no idea how to cope with any of it.

What struck me most in the pre-Crohn’s diagnosis days was how tired I was all the time. I don’t particularly remember that part when I look back now, (although that’s understandable as there was a lot more gruesome stuff to come), but I think it’s important to focus on it, as now I realise what a clear sign exhaustion is that something is awry. I feel quite the fool reading of my utter naivety now that I’m decidedly more versed in the workings of my own body, but back then I was a dunce in the deduction of illness. 

Now I have an encyclopaedic knowledge of my own back passage of course, and not many 25 year olds' can be expected to have that, unless they are in extraordinarily specific and somewhat questionable professions…so I won’t beat myself up too much.

Anyway, one quote from my diary, which particularly upset me, and struck a chord even today, was in relation to my…relationship. I spoke to my leather-bound confidante on my permanent exhaustion and nausea, and how it left me cold in getting amorous with my beloved:

‘I couldn’t possibly try to explain to him why I don’t want to be with him and I think that’s what’s going to end up being the death of us, just not being able to explain the way I feel about things’

This made me cry a little because it reminded me how deeply the disease was affecting every aspect of my life, even before it had even been officially named. Already I was unable to communicate my feelings to the man I loved because I was incapable of communicating them to myself. I was completely and utterly alone. Trapped in my own failing body.

I feel sad for my former self because I want to scream at her to go back to the hospital! See the doctor! Don’t listen to that colleague! But as we haven’t quite mastered time travel yet, I just have to make do with saying the same to any of you who need to hear it.

It wasn’t ‘the death of us’ by the way, nearly the death of me, but I thankfully dodged that particular bullet too. I suppose the reason I’m relaying this afternoon of musings from my memoirs; to remind you that it’s important to trust your gut. (Even if it’s your gut, that’s letting you down). If you think something is wrong then push to get it clarified. Talk to the people you love – if you don’t understand what’s happening to you and can’t find the words then just tell them that.

If all else fails, write it down. Just don’t wait 5years to read it again. 

Blue is the new Black

I’ve read a great deal over the years on how depression makes you feel. From huge tomes by great authors on how the mind affects the body, to in-depth health articles from medical professionals, to the banality of a Minion/Marilyn Monroe-themed ‘inspirational’ quote on Facebook. The push in these day to day quotes is always that physical and mental illness is always something you should ‘fight’. But what if your body and mind are too exhausted?

For me, depression comes in many forms. It washes over me like waves with varying degrees of force. Sometimes the malaise passes pretty quickly and others it lingers for days like an un-emptied litter tray.  It’s a feeling of almost ‘nothingness’. I don’t want to do or even say, anything.

Everything is a chore. Communicating with the people I adore is tiresome.

I’ve heard depression described as ‘feeling as though you are walking through treacle’; but I’m not sure I agree with that. Mainly because EWW imagine that? Your shoes would be ruined and your feet would stink. But also because for me, depression is more about my inability to function in often the most banal of situations. Talking about last night’s TV to a colleague can become a mammoth and seemingly utterly pointless task. I don’t want to do it, and why should I have to? Do I have to wear a badge that says ‘I am feeling anti-social today please do not approach’? Because I’ll make it, I will, don’t push me, I’m one chat about Emmerdale away from buying a badge maker.

The other side of that anti-social coin is really that I’m not anti-social at all. In fact it’s physically painful when I become aware of the way I am acting. I don’t want to shut myself off, or be alone. But I am frequently powerless to change that. Or at least that’s how it seems. I don’t even have the energy to explain all of that when I’m in the midst of it.

My Mum once told me she ‘had the blues’. That’s one I favour too. It’s melancholy and expressive and doesn’t shy away from it; it just seems to lessen the worry for those around us. Something that is important, as although we feel all the love we did before we ‘got the blues’, sometimes we can’t express it as we once did. Colour changes, and at some point the tide will go out and the waves will dissipate.   

I don’t try and torture myself trying to find a cause for it anymore. I don’t blame having my heart broken by finding out George Michael is gay, a harsh word said in anger with my beloved, I don’t even blame my cat choosing the lap of my partner over mine. I don’t study my own behaviour and internally batter myself over the head for it. I don’t shy away from facing it, and I hide when I have to because that’s OK too.

I focus on what I now know for sure and from experience: it will pass. 

Sunshine After The Pain

Sometimes it’s hard to be a patient. Giving all your love to just one pan.

It’s often difficult to see the bright side of things that can be so intrinsically negative. 

Lately I’ve been trying to focus on the good and get a jump start on the bad; pre-empting aspects of my condition I know to be negative with what may effectively end up a positive. 

This isn’t easy, and it’s not even necessary either – but for me it often helps me see past the fog of disease, and focus on what good I have in my life. 

The other day I felt so fed up I wanted to hibernate. It’s really cold here now and my joints ache, my arthritis has flared, everything hurts from my toes to my hair and my Crohn’s is pretty much joining suit. Never one to be left out of a party is Crohn’s! So instead of wallowing in self-pity I tried to do things I knew would help – hot baths to ease my joints, cold compresses on my sore knees, pain relief when I needed it and not when it was too late and I’d become desperate. Look, I went hog-wild and treated myself to some painkillers on a school-night because I’m not just Born With It AND Maybelline, I’m also Worth It. Don’t let anyone ever tell you I’m not the life and soul.

So in the spirit of looking on the bright side and the importance of self-care, here I have handily compiled a (tongue firmly in cheek) guide to seeing the flip-side of illness:

 

1. “I can’t walk very well today because of my painful joints and arthritis”

Have a seat! Seats are great! So are couches and floors! Even better – LIE DOWN! In a bed!

 

2. “My medication is giving me cold sweats”

Your body has its own self-cooling facility! You are the envy of people from hot countries and cheap hotel rooms without air-con everywhere!

 

3. “I feel sick”

But think how good you’ll feel and LOOK when you don’t!

 

4. “I can’t stop rushing back and forward to the toilet”

Enforced fitness! AND maximum time to read books and catch up with your friends via your mobile telecommunication device from the comfort of your porcelain throne!

 

5. “I really wanted to go to that party and now I have to cancel”

Who likes parties anyway?! You’d only end up in the kitchen talking to a drunk bore while absentmindedly gnawing on a chicken wing. Plus, they NEVER play ABBA, it’s pointless. (Also think of the money you’ve saved on a gift!)

 

6. “I’m so tired”

You are an adult, which means you can go to bed at 8pm without fear of judgement! If you want you can go to bed anytime! Just not at your desk. Or at the bus stop. Or crossing the road. But otherwise, get to bed!

 

Ok so there you have it, just a snippet of some of the great ways you can keep on top of those illness blues. Feel free to use any of these when you need to! You can also print this out and post it on your fridge if you like, for those moments when you need a wee reminder that the sun will always rise tomorrow, and so will you.

(Side note : You are all very handsome and lovely for reading my ramblings all the way to the end and not subsequently sending me hate mail and if it wasn’t for all the restraining orders I’d marry you all in a Mormon ceremony with multiple bathrooms xoxoxoxxx)