Wednesday, 31 December 2014

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

Saturday, 20 December 2014

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…

Sunday, 14 December 2014

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.

Sunday, 7 December 2014

...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.


Monday, 1 December 2014

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.