Saturday, 29 November 2014

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.


Friday, 21 November 2014

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

Sunday, 16 November 2014

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?

Sunday, 2 November 2014

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) –

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