When the Bell Crohn's

Inspired by a conversation about how we are ALWAYS SICK with a good friend the other day; I got to thinking about the frustration I suffer on an almost daily basis in expressing the complexities of my condition to the wider world. It's no secret that the majority of chronic illnesses, and my own particular disease, are 'invisible' due to the majority of symptoms going unseen. It can therefore be incredibly difficult for those outside of the condition to distinguish if we are having a good day from a bad. The problem here is that often a good day can turn to a bad one within moments of one another. With startling regularity I can wake up feeling top notch (or at least 'normal'), to borderline ADMIT ME TO HOSPITAL IMMEDIATELY within minutes.

Chronic illness, and in particular IBD, can be so unpredictable that planning anything is frequently an impossibility. I often feel fine to agree to your party in a week’s time because I'm fine NOW, but please don't be too flabbergasted or disappointed when I tell you a few hours before said event that I genuinely can't make it because I literally can't get out of bed.

One of my main gripes on this topic is the irritation people around us often seem to feel on hearing that we've taken a turn for the worse, or simply that nothing has changed since the last time they enquired about our health. I'm often asked how I am and when I venture to give an honest answer I'm met with those 'here we go again' eyebrows, a glaze over of the eyes or an instant change to the subject. I’m often left feeling like a killjoy, an attention seeker or the Fun Police. Let's face it, illness isn't ‘fun’ to hear about over a cup of coffee or at the office water cooler, or during intercourse, but sometimes we get tired of telling you everything is fine just to appease you. If you think it is depressing hearing about our disease for 30seconds, then trying living with it 24/7.

I wouldn't wish my condition on anyone, but what I do wish for 2015 and beyond, is that people around me would attempt to understand that this isn't fun for me either. In fact it's the complete opposite. It's walking through muddy puddles then discovering a hole in my welly boot. It's forgetting to have bought milk when just I've made my tea. It's being forced to listen to ‘Ironic’ by Alanis Morrisette on repeat. You get the general idea. I didn't choose the Crohn's life, it chose me and my defunct insides, and my social life is regularly left paying the price. It's difficult enough living with the knowledge I'm suffering from an incurable illness without the seemingly consistent lack of empathy.

I know I can't rid myself of my Crohn's Disease but I can try to medicate the diseased attitudes towards it.

Happy New Year  xox

Booty School Drop-out

One of the main stumbling blocks in helping those around us understand the complexities of our illness is lack of education. Many patients themselves are ignorant of their own disease. With this as a starting block how can we be expected to educate anyone else?

I know people who profess to have Crohn’s Disease yet can’t even spell it correctly. C.R.O.H.N.S. I can certainly understand this from those without it; my boss for example spells it in such a myriad of different combinations that it feels like I’m solving a conundrum every time I see my paperwork. Obviously I write about Crohn’s a LOT but I don’t think it’s too presumptuous to assume you should know the name of what you are suffering from for starters.  Bad spelling aside, I find myself continually batting away inaccuracies and inane theories about IBD on a daily basis. My local doctor’s surgery is pretty lacking in knowledge when it comes to Crohn’s for example. In the past few years I think I can safely say I’ve taught them more than they’ve taught me about IBD. This in itself is a bit of an embarrassing disappointment.

Theories on the effects of IBD seem to vary from ‘OHMYGODYOURGOINGTODIE’ to ‘it’s just like IBS’ – neither of these being in any way accurate. In fact they are both deeply unhelpful for both patients and those around you. My office at work for example is a hive of hypochondria. Most days someone will have a stomach ache/period pain/IBS/eaten a dodgy curry and ‘know how I feel’. This infuriates me so much that depending on my mood on any given day I usually either smile politely through gritted teeth or straight up blank them. These comments only serve to remind me that people seem utterly reluctant to see past the outer shell and take on board that I have a serious illness. They gleefully fire their own suggestions at me if I look a little peaky – ‘eat more’/eat less/have a lie down/work less/take a holiday/go to the toilet’ ETC. I am aware they are perhaps just trying to be helpful, but it’s really only supportive If any of these suggestions have ever proven to work.

The idea of just going to the bathroom to sort myself out is an exasperating one. As if the toilet is some sort of magical pot of gold on which I’ll expel the tears of a unicorn and a leprechaun will hand me a piece of silk loo roll and all my woes will evaporate. (Although that would obviously be AWESOME).
Crohn’s patients do not go to the toilet 4505781 times a day. We don’t have diarrhoea 5754157854 a day and we don’t feel better if we just ‘eat the right things’. People with ‘upset stomachs’ do not know what it’s like to have Crohn’s Disease because WE HAVE AN INCURABLE ILLNESS not a bout of diarrhoea that will pass in 24hrs.

As we are a few days away from a new year I’d like to make my resolution to educate rather than continue to allow myself to become infuriated with inane comments. If someone makes a poorly judged joke at the expense of my condition I’ll calmly kill the mood stone dead and explain that it’s actually utter bullshit. Facts before funnies. I understand that this will undoubtedly lead to the party invites drying up but that OK. I spend most of the time at any party in the toilet anyway…

Ne-GUT-ive Nelly

As patients with chronic illness I certainly feel it's vital that we are engaged, and concerned with learning as much as we possibly can about our conditions. It’s important we continue to maintain an active interest in medical advances and potential research into finding a cure for our illness. It’s interesting and encouraging, and allows us to maintain a level of hope that one day we might be able to manage the condition more effectively. Or, best case scenario, be freed from the nasty shackles of Crohn’s disease entirely.

However, in awareness campaigns and publications used for spreading the word, I rarely see any of practicalities. Where is the advice on how to live alongside Crohn's whilst it’s here?

I do see plenty of negativity at how cruel it all is, and how wrong it is we should have to suffer with it on a daily basis. I see a culture of competitive suffering whereby patients want to outdo one another with bigger and better scars, more traumatic ops or fewer bits of their insides.  

I'm at a bit of a loss to understand these urges. I just can’t see any benefit in it. Yes, I would certainly say my own blog is by all means not endlessly filled with joy, and I don’t spend my life with Crohn's Disease skipping through forests with robin redbreasts whistling on my shoulder. But when I write I try to think of what I, as a patient, would want to read. I consider what words might help me to understand my disease and help me cope with it. What might help to make someone like me feel less alone and isolated?

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 again and again. It’s MINE.  It’s private, 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, many free cocktails.

I want to feel my best and enjoy my life when I am well enough to do so. I've found myself avoiding various groups and sites because I don’t need to see more scars, wounds, cannulas or all the medications you are taking - I HAVE ENOUGH OF MY OWN. I’m not even wholly convinced wearing purple and showing off your battle scars is the way to garner publicity of our condition either, I think we should focus on trying to educate rather than shock. Of course I’m all for anything that helps to make patients feel less isolated in living with chronic illness, but for me it all seems to remind me of the negative aspects of IBD.

I want to feel that I am in positive company, not shrouded by a cloud of negativity. I am well aware how new-age that all sounds but it's certainly true that we have enough to worry about without taking everyone else’s' on board. I want to be able to see the good in my life and try not to blame everything wrong in it on my illness. If you do you may find that you’re certainly not alone in your plight, but you may end up alone in your attitude.

...And a Happy New Rear

It's rapidly approaching my favourite time of year. CHRISTMAS. I love it. I LOVE IT. It's when the snow falls, robins and local women plump up their breasts, people wear SEQUINS and supermarkets offer wonderful bargains on Tia Maria.
Of course it's easy to get wrapped up in the gifts, parties and overindulgence and forget about the true meaning of the festive season: Watching ‘Elf’ and ‘It’s A Wonderful Life’ on repeat whilst downing the remaining Advocaat that's been gathering cobwebs at the back of your cupboard for 12months.

Inevitably, following the Christmas festivities comes a new year, and it's often hard to buy into the optimism of a new beginning when the once crisp snow is turning to dirty slush, sequins are missing from your FAVOURITE TROUSERS and you've drunk the remaining Tia Maria dry. Problems, I'm sure you'll agree, we can all relate to.

My first Christmas with Crohn's Disease was in 2010. I was on a liquid diet and faced with the horrific prospect of having to watch my family tuck in to a delicious feast whilst I sipped on a nutritious (and absolutely rancid) milk-shake. FYI a 'liquid-diet' is nowhere near as fun (and alcohol fuelled) as it sounds. It involves cutting out food entirely and drinking 4 or 5 shakes per day instead. This is used for various reasons; mainly in an attempt to control symptoms and allow your insides to rest without the stress of trying to digest food. The process is bearable for a day or so but it can be torture at times, when you smell food, or when people are eating or preparing food around you, or ALL THE TIME.

Anyway, during this particular Christmas dinner around the table my boyfriend’s Mother uttered those immortal words "Would you like me to put some Turkey in the blender?" and I almost threw up and sobbed in unison.
I eventually caved and ate a little. I had an internal (and probably external) tantrum. It just didn't seem fair. I was having such a rubbish time and making everyone else feel rubbish in the process. How could anyone enjoy piling their plates high whilst I looked on longingly imagining each one of them around the table as varying sizes of chicken legs like a bad Tom & Jerry cartoon?

After I'd demolished a poultry (geddit?) slice of turkey, and a teaspoonful of gravy, I felt I could truly relate to Jesus and his suffering. We were both starved and wearing awkward and uncomfortable headwear in front of a crowd. Not really of course, (sorry Mum), but I did find it all very difficult. I struggled with overcompensating and trying not to make it 'all about me'. I was "FINE!" all day, and that was rough, because I was far from it. I was a mere few days away from having my surgery, terrified, and in agonising pain.

Every Christmas since has been infinitely better. My families have gone all out to make me comfortable and find food to suit. I no longer struggle with embarrassment and borderline shame when they try to cater for me. It's not awkwardness, its kindness. I’m no longer uncomfortable in asking for more or less of something, and I’m not ashamed of my condition.
I'm looking forward to this Christmas because I'm alive and kicking. This year I can eat and WILL eat and if I'm in pain afterwards I'll maybe have a nap and try not to beat myself up if I sleep a little longer than I should. It's a day to try and forget about the miserable bits of the daily grind and focus on all the goodness in our lives. Less sprouts more turkey.
Less chipolatas more sides of ham. The latter being a rule to live by in all areas of a young woman's life.

MERRY CHRISTMAS DARLINGS X X

Aware in a Manger

Today marks the beginning of December, the first chocolate I can eat from my Hello Kitty advent calendar, premier of the new pants I bought at the weekend, and Crohns and Colitis Awareness Week.

I fisrt became 'aware' of Crohn's and Colitis when I was diagnosed with one of them. 

I was advised I had Crohn's Disease shortly after my 26th birthday after a horrendous couple of years of pain, sickness and abject misery. When Crohn's was mentioned I was confused yet almost overwhelmingly relived. I was overjoyed at the idea that now the doctors knew what was wrong with me they could fix it, right?! WRONG. That was the next diseased bombshell; its incurable. 

Instantly on hearing that word I almost automatically assumed I was destined to spend my life in agony, rocking back and forth in the foetal position praying for the sweet relief of death to take me. But at least I wasn't being a drama queen about it...

I was depressed, terrified and painting on a smile on a daily basis for my loved ones, trying to play a super-trooper and not letting it phase me. Of COURSE it was phasing me; all my family and friends thought I was dying! I thought I was dying! But I didn’t die. I lived tell this take and bore all of you with my horrendous patter! Don’t thank me, thanks my surgeon!

Crohn's and Colitis are incredibly difficult conditions to live with. They are Inflammatory bowel diseases, they are not IBS, they are not an eating disorder and they don't just get better if you eat the right things/get some rest/have an operation etc. etc. to infinity. Believe me we have tried all of the above and a million more. We have 'invisible illnesses' which mean it's a constant battle for us to persuade other people to even accept that we HAVE an illness in the first place, let alone understand what it all entails.

Crohns Disease has changed my life in immeasurable ways. It has made it incredibly difficult, painful and given me a plethora of new worries, but it's also made me feel strong, more confident and forthright and ten times more passionate about those I love. It is definitely true that when things are at their worst you find out who truly cares for you, and I've tried to cling onto those people with a vigour I certainly didn't possess PC (Pre Crohns). I am thankful for having an incurable illness because it's given me an insight into my own talents, my own failings and allowed me to find strength and bravery I'd never have dreamed I could muster.  

I wager so many of you could, and should say the same. 

Crohnly A Winter's Tale

Winter can be a particularly difficult time for those of us with chronic illnesses. Our bones and muscles ache in the cold, we struggle to keep our energy levels up and we are susceptible to everything germy flying around our workplaces/households/EVERYWHERE. 

I personally love winter, it's my favourite season, but it can be perpetually disappointing year on year when we discover we are poorly at what should be traditionally the jolliest time of the calendar. When that fat man slides down my chimney I want to be feeling and looking my absolute best! The same applies when Santa appears too.

It's important to prepare well for winter. I've begun treating it like a military operation. Applying the same dedication and preciseness I perform in organising the Christmas shopping list, towards my festive health. So whether you want them or not, here are my top tips for serving the winter with a defunct body. My own early Christmas gift to you, if you will. (I’ve also got you a novelty toy reindeer that poops out chocolate raisins too, I’m not a monster). 

 

1.       Prescription: Party time! 

Ensure you have organised all your repeat prescriptions in plenty of time: Find out when your doctors surgery closes and reopens and ensure you allow yourself enough time to get it in and picked up.

2.       Toasty Marshmallow!  

Wrap up warm. Don’t be ashamed of dressing like the abominable snowman if it helps keep you cosy throughout the day. I favour layers - a thin thermal long-sleeved top under my normal clothing, and a pair of heat-generating leggings (the best invention since toast), have been my saviour in the last few years. My joints ache in the cold weather and my arthritis flares so I find thermal anything helps keep the heat in and stops everything seizing up as badly.

3.       Interview with a... Bonfire!

Try to arrange any essential appointments sooner rather than later - if you need bloods taken of a b12/flu jab plan in advance, weeks if required as your friendly neighbourhood hypochondriacs who have been sniffing for over a day will soon be bombarding your local doctors surgery under the belief they have a life-threating illness.

4.       Chron’smas List!

Make a list of everything you need to do and put the tasks in order of date - what needs to be done first and get that out of the way. What can wait until after the festivities have passed? If things aren't urgent then don’t cause yourself any unnecessary panic to get them done before the festive break. No added pressure is needed on top of planning for Christmas and New Year!  

5.       I’d like a speedboat, a diamond, a…!

Don’t be afraid to ask for help. If there is anything you are unable of doing yourself due to time constraints or simply your rubbish health itself then always ask a friend/ partner/family member to assist you. You don’t have to do everything alone.

6.       It’s my party and I’ll sleep if I want to!

Don’t feel any pressure to play along with endless frivolity. If you want a nap, take a nap. Just not at the dinner table obviously as that would be rude, and didn’t end well when my head landed in the cranberry sauce last year. If you are too exhausted to party like its 1999 every night, then don't. It may be hard to knock back party invites, particularly at this time of year, but it might be sensible to pick and choose. Don’t overdo it as it'll be worse for you physically in the long run.  

7.        An extra sprout never hurt anyone!

Try not to massively overindulge. Drink and food on top of more drink and food are AMAZING in theory, but in practice they can floor the healthiest of people. So always try to bear in mind you have delicate insides and may pay for it handsomely later. Slow and steady wins the festive food race.

8.       Don’t forget FUN on that list!  

Enjoy yourself!!! Where possible do what makes you happy and take care of your body. It will thank you for it in the long run.

 

An Open Letter to Surgeons Everywhere:

Firstly, I love you. 

You saved my life. 

You've also saved the lives of countless people I love and I am eternally grateful to you for that. You stitched me up so wonderfully that my stomach has a pretty cool scar akin to that excellent stitch work that got me an A+ in Home Economics from Sister Patricia.

 

But let me take a moment to reflect on my own personal experience with you and your fellow slice n' dice specialists...

We all know you are uber-skilled and uber-intelligent. We know you deal with life and death situations on a no doubt, daily basis. You probably lose patients regularly through no fault of your own. That must be a heartbreaking thing to get used to and take a level of stoicism most of us 'normal' people would find hard to muster. 

We know you are busy men and women and have demanding and hectic careers. 

But we also know you are human beings with hopes and fears just like us. Therefore when we are in a position where we have to talk to you it's because we are really sick. And probably pant-wettingly terrified about what's ahead. 

We are of course well aware there are people (on much lower pay grades than you I proffer) who are employed to assist you, and help to comfort us worried patients. But sometimes it's important we have a touch of reassurance from the man or woman who is physically going to be slicing/removing/inserting things into our bodies. I don't know about many of you, but when a man is at the stage where he's suggesting insertion, you've usually had at least a few dates/a drink or 40 beforehand. AMIRITE?! 

When a patient is brought to you to discuss their health, it's important to remember that pretty much every alternative has been considered beforehand. If our consultant or specialist is suggesting surgery we are now in a certain frame of mind. We are filled with uncertainty, fear and overwhelming hope. We are either in a lot of pain/very ill or at risk of becoming so without your healing hands. If you don't feel surgery is appropriate for us, please discuss this with us and perhaps explain why not. Don't pummel us into insignificance with science and phrases we don't understand. Consider how much your words can affect us. In particular those of us with chronic and incurable illnesses. Bear in mind that with an incurable condition we rarely have a light at the end of the tunnel. We won't ever be 'cured' but we may be able to feel better. 

We are not naive enough to fail to grasp that with surgery comes complications, cost, time and resources. We do realise you have these issues to consider before agreeing to perform surgery, however do not assume we are as unintelligent to gloss over the idea that the outcome for us is that WE MAY DIE. 

We don't want to be in a position where we need surgery. We aren't desperate for attention. We aren't exaggerating our pain. We understand the risks and put our faith in you because we feel there is no alternative. Our lives are either spent in unending pain and misery or we take the risk to possibly gain some form of quality of life. We don't need you to patronise us or attempt to baffle us with science. 

We want you to help us get better and we want to know the person we've entrusted to do that wants that too. 

Keep doing that magic with your surgical paws. We are all the better for it. Just be a wee bit nicer before you pick up the scalpel that's all. 

Yours, minus some diseased bowel, 

Kath x x

Did I Tell Loo..

Firstly, I’m well aware the topic of this blog isn’t particularly new ground to tread. It’s fairly tired material and spouted on an almost regular basis across health-sites and blogs. However as I’ve personally been pretty unwell lately and have encountered almost all of the following phrases, I felt a wee refresher was overdue. For that reason I’ve compiled a comprehensive list of the 10 things people with chronic illness do NOT want to hear. Please delight and disgust in equal measures, and utter them at your PERIL!

1.       ‘But you don’t look sick...’

(See also: ‘You look great! You must be feeling better!’)

Without a shadow of a doubt, the above phrase is the resounding Number One (or should that be number 2?! LOLZ! TEEHEE!) on every list of things NOT to say. It’s the single most infuriating thing anyone can say to anyone with a chronic and invisible illness. The frustration at these 5 words mainly stems from the insinuation that you as the patient, may be either lying at worst, or embellishing the truth at best. After many years of suffering from Crohn’s Disease myself, I’m still not even sure what the correct response should be when someone spouts this gem.  I’ve tried several retorts, from the faux-patient; ‘Well it’s an illness on the inside so it can be hard to tell just looking at me..’ to the almost explosive rage of ‘Are you calling me a liar?!’ Coincidentally, neither of which the Judge thought were good enough grounds for beating my colleagues senseless. Seriously though, it’s a hard statement to do anything with, and one which shows seemingly no concern; just judgement. At least that how it comes across in most cases. Invisible illnesses are at their most difficult when we, as patients, have to attempt to express how much unyielding agony we are in under the surface, when the outer shell looks like you’ve just stepped out of a Maybelline commercial. Pain and a plethora of other symptoms can strike at any time, completely unexpectedly in some cases, and without warning, so please don’t assume the packaging matches the product within, without all the facts.

So what to say instead?  - How about asking about our IBD if you don’t understand and would like to? Or if you don’t care and just want to be a Bitchy McBitcherson about it, nothing at all is just as good.

2.      “My friend/colleague/family member has it and she’s coping really well…/really badly…”

(See also: “You just need to learn how to manage it”)

This comment and all its different forms can be incredibly damaging to patients. It’s perhaps most detrimental to those who are recently diagnosed and still unsure of the condition they have been lumbered with and its magnitude. It’s a human instinct to share experiences, and knowledge. Having things in common with others is one of the quickest ways to build a bond, so I understand why those who hear that patients have IBD have an urge to share what they know of it themselves. However, in my experience, these nuggets of information from non-patients are often very harmful to our state of mind. In the case of a comment implying someone they know is doing better than you, it almost implies we aren’t quite trying hard enough, or that we are lying down to our illness. In the case of hearing horror stories someone they know is doing much worse it can lead to panic, massive anxiety and uncertainty about the future.

So what to say instead?  - “My friend is also a sufferer, I’m always up for learning more about the condition so I can help you both!”

3.      “You’d feel better if you just relaxed/took a holiday...”

(See also: “I read about some alternative therapies, have you thought about trying...”)

First things first, we have thought about everything. There isn’t a treatment, or potential medication left unturned in our quest for intestinal normality. But our illnesses regrettably don’t have a cure. Patronising us with such comments as ‘take a break’ won’t help. We’ll still feel awful and we’ll still have an incurable illness. And no we’re not trying to be negative, just realistic.

So what to say instead?  - “Wish you could get a break from your illness!”

4.      “Why are you always tired?”

(See also: “Everyone gets tired”)

Prolonged fatigue is an incredibly common symptom of most chronic illnesses. Fatigue isn’t ‘just’ tiredness. It’s intense and unending exhaustion. No amount of sleep is ever enough to shake it off. A nap or an extra hour in bed here and there just won’t cut it. People who suffer from incurable illnesses understand what it means to be TIRED. They feel they make collapse if they don’t catch a few hours and yet it’s still never enough. When people question this utter exhaustion it’s both upsetting and infuriating in equal measures. We know everyone gets tired, but not everyone has everyday life to deal with and a chronic illness at the same time.

So what to say instead?  - “Anything I can do to lighten your load?”

5.      “You just need to make some changes to your diet”

(See also: “Should you be eating that?”)

Please, please don’t tell us what/where/when to eat. When we can eat it’s like Christmas Day, and when we can enjoy a meal without a hint of pain or nausea, it’s like we’ve reached VALHALLA. Food and drink and IBD patients have a notorious love-hate relationship whereby we often struggle to maintain a healthy weight. When we can eat, we can be utterly and almost instantaneously floored by incredible abdominal pain, or find ourselves getting up close and personal with the porcelain for the remainder of the evening. Concern about our diets is natural for those who care about us but It’s very important we don’t feel under scrutiny whenever we are eating in company.

So what to say instead?  - “What can I make you to eat?”

6.      “You’re lucky you’re always so thin”

(See also: “Have you gained/lost weight?”)

Weight is a very delicate subject for IBD patients. We can fluctuate from drastic and life-threatening weight loss, to piling on the pounds through medications such as ‘hamster-cheek’ steroids.  Losing weight is rarely a positive for us. In fact it’s a sign things are going downhill health wise. When I was at my sickest I had lost 3stone in a month and dropped 2 dress sizes, and most horrifying, 5 bra sizes. It’s no fun being ‘skinny’ with an incurable illness.

So what to say instead?  - “How can I help you get that weight back on?”

7.      “It will get better, just be patient”

(See also: “You’ll feel better after your op/meds/a good meal”)
Again the incurable part rears its ugly head. We won’t ever get better. We may at some point feel healthier than when we’ve been at our lowest medical ebb, however time won’t heal IBD. It’s not a cold or flu where in a few days we will be fighting fit again, we’ll be fighting our conditions for many, many years to come. And if that sentence alone sounds depressing, imagine living with it.

So what to say instead?  - “I hope you start to feel a bit perkier soon”

8.      “Are you in the bathroom again?!”

(See also: “Must be great to get some many extra breaks!”)

It may be hard to believe but IBD patients don’t actually want to spend hour after hour in excruciating agony, clinging on for dear life to a radiator or a sink or whatever is closest to hand. Just a heads-up, we aren’t actually hiding in there, we are forced onto the porcelain throne through no fault of our own. It’s actually not ideal for us to be ensconced in lavatorial duties as we also have lives outside of our defunct insides.

So what to say instead?  - How about no comment at all? Or perhaps a gentle question as to whether there’s anything you can do? It’s not rocket science.

9.      “You’re too young to be sick”

There is no age restriction on illness. IBD research has shown it is most prevalent from teens to people in their 30’s. However like most chronic illnesses it really can strike any age at any time. Therefore the idea that age is a barometer of health is utterly redundant in most cases. IBD has many other off-shoots of the condition such as arthritis and joint pain, and funnily enough it’s no fun to be a teenager and having to sit down whilst out at the local discothèque.

So what to say instead?  - “I feel for you!”

10.  “It could be worse…”

(See also: “You should consider yourself lucky”)

I’d like to think it goes without saying that patients with any existing condition, and as a matter of course EVERY HUMAN BEING ALIVE, knows that things could always be ‘worse’. But what a redundant concept that very phrase is. I’ve never been sure what it’s meant to instil in the recipient; grace, embarrassment, silent reflection? It certainly makes me want to silently reflect on the bodily harm I could do to the person saying it, and not much else.

So what to say instead?  - Nothing. How about a hug?

Toot Toot

I’m generally not one for blowing my own trumpet. There are many reasons for this, one of which is being brought up in a small Scottish village where if you aimed for anything more than a job in the local corner shop you were getting ideas above your station. Another is having given up playing the trumpet when I was 8 to pursue a short lived career in running up and down hills with boys after school instead. But it’s mainly because I find the whole idea of drawing attention to myself completely and utterly abhorrent.

In this day and age of ‘selfies’ and social networking everyone seems to know everything about everyone else, including friends of friends, and people who are complete and utter strangers. I’ve met people in ‘real life’ and felt I already know them just from seeing their visage popping up on my computer screen, or from somebody I know having ‘liked’ something they once said. We make judgements on people from their ‘profiles’ rather than what they are actually like. Ideally I could just live my life without all of that, without Facebook, Twitter et all. Just live in the moment and enjoy looking at pretty things instead of my first though being what Instagram filter would look best on them. But in reality it’s one of my biggest vices. I’m embarrassingly hooked on it all. It’s the urgency and the validation; ‘15 people have liked my photo so I must be attractive!’ It doesn’t matter that the man I love and my Mum and Dad have been telling me that since day one.  

I hate the idea that validation of any area of my life from strangers seems more genuine and important to me than people who actually care about me. I’m certainly working on that, and I fear I am not alone in that way of thinking. I think it’s mainly because I’ve assumed that those who love me would perhaps bend the truth slightly to appease me or avoid hurting my feelings. Because they care they would say that I really do suit that pink shell suit, it brings out my eyes! Or that that piece of writing where I bear my soul about the devastation of living with a chronic illness isn’t actually that depressing to read.  

But what has all of this got to do with Crohn’s Disease I hear you cry, and not without good reason. Well mainly it’s my attempt to pull myself out of insecurity and into the real world where people are actually proud of their achievements. CAN YOU IMAGINE IT? It’s been brought to my attention recently that nothing in life ever came from sitting back and waiting for it to happen and recently I’ve fallen into that trap. The fact that I feel like I’m at deaths door a large chunk of the time definitely plays a part in that, but I am slowly learning to take my own advice and stop lying down to my disease. Literally, and metaphorically.

In the past year I’ve written a book about my life with Crohn’s. I believe it to be pretty good, but the more I’ve thought about the reality of people actually reading it the more I start to think it’s essentially 50,000 words of garbage. I’m now stuck in a terrifying limbo of having zero confidence in myself and taking the plunge and getting it out into the world. The thing is, I know that those of you who read my blog and tell me you like it don’t have to. You take the time to do so because you want to and that is very encouraging. Don’t get me wrong, I can handle it compliments over a phone or a computer screen but if you venture into telling me I’m a halfway decent writer FACE-TO-FACE I will go redder than my intestines after a scope and collapse into a blabbering mess about how daft you are and change the subject at the speed of light.

My blog is nominated for a UK Blog Award. I’m also nominated for 3 WEGO Health awards. This is all incredibly exciting and certainly flattering, but again I have zero confidence in winning. And that’s ok! In my case it genuinely IS just nice to be nominated. I feel my confidence build and start to believe I have some talent a little bit more day on day and that in turn helps my health. If I’m anxious I’m ill. If I’m stressed I’m ill. So I’ve decided just to enjoy the ride and see where it all takes me without worrying about a thing. Focusing on what’s important, and that isn’t winning awards, its reaching out to people who are struggling and helping in any way I can. Amazingly this blog has given me an incredible platform to do just that and for that alone I am extraordinarily proud. I’m polishing up my trumpet in the event that one day I’ll feel confident enough to blow it.

P.S. Thanks a million if you have voted for me so far. I genuinely haven’t felt this thrilled since I won a pair of 40denier women’s tights for my Mum in my Primary School raffle. If you haven’t voted for me, and that’s fine too, I’m not a violent person, and you can do so here:

WEGO Health Activist Awards (I’m nominated in 3 categories; Best in Show – Twitter, Best in Show- Blog and Health Activist Hero) –

https://awards.wegohealth.com/nominees/34

UK Blog Awards 2015 (I’m in the Health & Lifestyle Category and public vote opens on 10^th Nov) -

http://www.blogawardsuk.co.uk/ukba-2014-whats-it-all-about/

xxxx

I Feel Pity, Oh So Pity..

In being a ‘professional’ sick person, you will encounter people’s pity on a regular basis. It will mainly be well meant of course; a head tilt and pitiful glance from a nurse caring for you, a fellow patient watching as you violently throw up your cold toast, or a doctor looking at your back end and shaking his head disdainfully. These particular looks may even come from those closest to you. It will feel very strange. Especially if you happen to be someone who prides themselves on staying ‘normal’ in the face of a distinctly abnormal illness. It can feel as though you are being treated as a second class citizen. You are not. At least not by 99% of these people.

What can appear as pity may just be consideration and hurt at having to watch you suffer. Let’s be honest, we could all use a bit of consideration from time to time. Chiefly when you are feeling awful all day, every day. Inflammatory bowel disease and all chronic illnesses are hard work. They are challenging, discouraging and physically and mentally exhausting. And that’s just the good bits! LOL OMG TEEHEE!

But what of those without a long term illness? Do we as patients pity them? I suppose it would be easy to feel pity for the majority of those ‘well’ people, after having been through the health-mill. Without having been at death’s door they may never fully be able to appreciate the simpler things in life! How it feels to truly appreciate a hot bath, or a day off, an extra hour in bed or simply be able to get through the day without 45 toilet trips.

I know I for one, have a new found respect for the healthcare system since I became ill. I hadn’t realised just how much we take doctors and nurses for granted and how (literally) life-or-death their jobs can be on a daily basis. I’ve cried on nurses’ shoulders and they’ve listened while I’ve wallowed in misery, their jobs are so, so much more than merely attending to cannulas and giving bed baths. People seem to forget how much they tend to patients emotional needs as well as physical. That’s why is OK if they give me a glance that says they perhaps pity me. I’m their patient.

It’s also tolerable if my Mum tilts her head and says how sorry she is for me, because it’s done out of love.  Sometimes it’s important to choose your battles. Before you get irate at someone’s glance in what you perceive to be the wrong direction, take a moment to decide if there is anything more than genuine care behind it. You’ll usually find the people who ‘pity’ you want nothing more than for you to be well.

Ten Pin Bowel-ing

There is a certain, fairly unattractive attitude that can rear it's head from time to time in living with a chronic illness. It applies to both patients and those around then alike. There's nothing particularly wrong with it, but it can be dangerously catching. Patients of chronic illness may find themselves becoming increasingly frustrated with friends/family/colleagues who complain of ailments which can appear decidedly trifling. 

When you are (perhaps, barely) coming with an array of horrendous symptoms and feeling like you've been run over by a 10 storey bus OVER and OVER and OVER... It's hard to sympathise when the person by your side has a sniffle and is complaining as though they have mere moments left to live. It can be hard to bite your tongue when all around you, people are suffering from seemingly nothing more than acute cases of hypochondria. 

But what to do for the best when encountering these people? Grin through gritted teeth and sympathise, or tell them straight that you feel they are acting like toddlers and to get over it? Neither is a particularly pleasurable option, let's be honest. Pretending you feel for them generally makes them feel slightly justified in their whining, but does nothing but cause frustration and a bubbling rage inside your already decidedly burny-burny guts. On the other hand, getting vocal on how selfish and dramatic you feel they are being can lead to massive rifts in relationships and perhaps finding those people who were once your biggest supporters drifting off into the friendship ether. 

For me personally, I tend to go for my own form of option 1. I really wish I didn't but I find it abhorrent listening to people complain of something which amounts to nothing. Not that I WANT people to be ill of course because I absolutely do not! It's just that I've found my sympathy for people suffering from chronic illness much more acute and intense since I became ill myself, but this has, in turn lead to my tolerance for bullshit falling rapidly. If someone is genuinely ill and trying their best to make a life for themselves DESPITE sickness; I have nothing but admiration, respect (and if required, cuddles) for them. But it just makes bile rise in my throat when I hear phrases like; "Ah I had a dicky tummy last night after a curry so I feel your pain" or "I've got swollen glands this week, my throat feels like cut glass so I can't eat either" (*commence internal screaming*)

I tend to take, and again I wish I didn't, these types of comments as a personal insult. They always seem like such a disappointing lack of understanding. A total failure to grasp the complexities and serious nature of my illness. But are they? Or is it just human nature? Is it not in our make-up to compare and contrast? Share our experiences, however different they may appear? I know when I tell stories about my youth and how I could, for example, drink 5 men under the table, I may be bending the truth very slightly. [it was only 1 man and he may have slid under the table after slipping on a rogue salted peanut]. So perhaps people think I am applying the same exaggeration rules to my own condition? I certainly know patients like myself who do. I've encountered enough of them in hospital for a start. 

Either way it's not easy trying to walk the conversational tightrope between feigning compassion and punching someone square across the jaw. It's important to remember we are all intrinsically the same. We all want that little bit of attention and some see illness as a way to garner some much needed care. There's nothing really wrong with it, which is why I always feel disappointed in myself for taking things so personally. I want to be able to treat someone with flu with the same kindness and understanding as someone who has a life-threatening illness. But really I can't. And I won't. Why not continue on my crusade to weed out that drain on modern society: hypochondria? I feel it's almost part of my life's calling. I will don my cape and gold boots (I wouldn't really to wear a cape and gold boots but I would look AWESOME), and gently reassure those with "the worst headache in history" that they need to take 2 paracetamol and get on with their lives. People may call me a hero, but I'm really just a regular girl. I'm not into dramatics...

The Final Colon

A few nights ago I was in the grip of a particularly nasty migraine. Much like my Crohn's symptoms, I've had headaches going back as far as I can remember; at least pre-puberty, pre-training bra, but had always just assumed it was another hereditary complaint I would just have to put up with. However the increasingly regularity of these 'headaches' has eventually led me to get checked out properly, and now I know it's migraines I can act accordingly. Seems simple I suppose, but when you are faced with a myriad of health complaints you start to rate them in order of importance, and once a month-3 to 4 day-headaches, weren't high on my personal list. 

Anyway back to the night in question. In the grip of this particular migraine, I couldn't open my eyes or so much as hear even my own voice without feeling like someone was drilling into my skull. The pain had me sobbing and vomiting uncontrollably and I felt like I wanted to die. 

Yes, I wanted to die. 

I'm well aware that now, in the cold light of day, and migraine-free, that all sounds very dramatic and painfully over the top, but it's also pretty terrifying to look at my situation objectively and realise what relentless and excruciating pain can do to a ordinarily sane mind. 

Let me make one thing perfectly clear before I continue: I do not want to die. I've got a good and generally very happy life. I love, and am loved. I couldn't now imagine wanting to end my life. Plus I only have TWO cats for goodness sake; there's so much more to come. 

But in that few hours I couldn't see beyond the pain. I envisioned stabbing myself with a kitchen knife because it might somehow release the pressure on my head, I considered (and almost followed through with) slamming my head into the headboard in a vain attempt to knock myself out. Then I berated myself because I wasn't even brave enough to do anything at all and cried to my partner and buried my head back into a pillow. 

It's not a wholly isolated incident of course. For those of you living with pain, you will no doubt appreciate that these depressing episodes can be hauntingly familiar. Pain is subjective and overwhelming. Much like a disappointing lover it can leave as quickly as it comes. It's instantly forgettable. 

I normally wouldn't write on my experiences because I tend to prefer to focus on the positives, and on how to come out the other end of pain and misery. But this time I wanted to remember. I wanted to remember exactly how hopeless I felt so that I can perhaps act more quickly in future instead of waiting until things are uncontrollable. I wanted to change things a piece at a time. Only through realising how devastating an affect, (although temporarily), pain has on my mind as well as my body, I can start to work on avoiding these scary thoughts in future. Perhaps focus on how to get out of the situation practically, without lobbing half of my skull off or pulling my intestines out like a magician with a handkerchief. That can only be positive. 

I hope if you ever feel hopeless too, you can cling on to who you were before, and who you will be after, because pain is temporary. 

Ending your life isn't. 

My Crohn Personal, Disease

Spending more time than I probably should on social media, has brought up an interesting issue for me lately. Aside from the usual; getting disapproving looks from my significant other when I check my phone AGAIN in the middle of watching a film. 

Lots of you message and email me querying your symptoms and whether or not I've tried this drug or had that jab, whether I've felt this pain or had that side effect. What I seem to constantly relay is that no one's Crohn's Disease is the same Your Crohn's is not my Crohn's. 

Like any illness there is always a strange undercurrent of competitiveness amongst it's sufferers. It's a strange human trait that spreads like a virus the longer it's left alone. 

Comparing your symptoms to others can of course be helpful in gaining knowledge and an understanding of your condition, however it can also lead to feelings bordering on inadequacy. 'Ive never had surgery so my Crohn's can't be as bad' 'I don't seem to be in pain a lot so maybe I shouldn't be talking about it..'. 

I've seen occasions of people being shot down in flames in group discussions because they still have all of their insides or because they've only been on one treatment and so far it's working. How bizarre. How strange that other humans have the urge to 'better' one another by reminding them that THEY are worse off! The rules of logic don't even seem to apply. 

There is no positive outcome from reminding the world (or in this particular example: a fellow, and vulnerable, patient) how awful you've had it: think about this for a moment before posting graphically about your experiences; will it help to ease the worried mind of the person you're directing it towards or will it only serve to terrify the briefs off them? Will it make you feel more satisfied? Why? What is lacking in your life that you feel it necessary to play the victim? 

If after mulling those thoughts over you still post then fair enough. 

I just fail to understand what benefit comes from attempting to out do someone else in a similar position. Isn't the point of communities and help-forums to share knowledge in an informative and supportive way?

 

When I was first diagnosed I was given so much misinformation it terrified me. Amongst other symptoms I was told I'd go blind, lose my entire stomach, require a bag for life, eventually get cancer, lose all my hair, etc etc. 

In reality I lost some of my intestines and a lot of my hair. Not nearly as horrifying. 

It's a culture of shock and drama that people seem to thrive on. Always clambering for the worst case scenario. 

The reality is Crohn's Disease, and chronic illness as a rule, is really pretty rotten. But everyone is an individual and everyone suffers differently. What treatment works for me may not work for you, it doesn't mean I am better or worse off than anyone else. I'm just my own woman with my own body and my own miraculous rack. No one can tell me I  don't FEEL a certain way because only I feel it. I decide when I can't cope and I reach out for help. I don't allow someone to tell me I'm 'not that bad because I..' BLAH BLAH BLAH - I know my own body and abide by it's rules not anyone else's.

Crohn's is very hard to live with and can affect all areas of your life. You just have to decide whether you live with it or against it, because the latter is a much harder climb. Especially when you are constantly batting away horror stories. Trust your gut. Sometimes it won't let you down.