Thursday, 27 February 2014

Rage Against the Latrine

When people talk about "fighting" their disease it summons up some great images for me.
Wards filled with patients punching seven shades of the proverbial out of their nasty bits. Lassoing their illness with diseased intestines. Smacking Crohn's over the head with a bumper pack of toilet roll. Etc, etc.
These images are just in my head then? Fair enough.
I don't particularly like the idea of having to place myself in a constant battle against something I can't control. The idea of 'fighting' is so abhorrent to me for many reasons; certainly because I am such a wimp that I couldn't 'fight' so much as a kitten with any great effort, but mainly because I just don't have the energy for it. I'd quite literally be fighting a losing battle.
Now this isn't intended to sound negative, but I've never been one for Marilyn Monroe-style 'inspirational' quotes. I simply don't like the idea of having to spend my life fighting. In reality living with Crohn's is  incredibly difficult. Tiring and relentless, and at the end of each day I generally feel utterly exhausted with it all. I already feel like I've gone seven rounds with [insert name of preferred boxer here] so the last thing I want to do is beat myself up (pun always intended) for not having fought hard enough to get better. The implication is that I somehow want this and am not helping myself, which is never the case. Either point.
Setting yourself up as a 'fighter' is great for some and can be a positive and inspiring message if that's your attitude, but for me it's detrimental - I prefer to focus on being the best you can be DESPITE your illness. When you are well relish it, and when you're not so good take the time you need to get yourself a little better. Don't pressure yourself, or push yourself to your limits because you think you'll be looked at badly if you don't. Anyone who knows how hard it is to live with the condition will understand.

I just feel the idea of 'fighting' an incurable illness is a redundant concept in itself. You aren't going to be able to cure yourself, so why pummel yourself into significance when you inevitably find you can't?
I want to be as well as can be and as healthy as possible whenever possible, but I don't want to feel I have to FIGHT for it. Life is already hard enough without having to compete with my own body. 

Tuesday, 25 February 2014

Rear Is The News

Crohn's Disease has been big(ish) news in the last couple of weeks. Certainly in the UK at least. The recent diagnosis of a reality TV show star has been splashed all over the papers with great gusto. It's been strange and vaguely exciting to see Crohn's being spoken about in the press. It's such an 'embarrassing' condition as a rule ,that it rarely gets it's time to shine in the spotlight.
Any awareness of this still widely unknown illness is of course, absolutely brilliant, but what happens when these stories become more damaging than helpful? How do you stem the tide of panic when false reporting can cause so much upset?
For me, in the week since this 'celebrity diagnosis' became a newsworthy, I've had to comfort friends who have been left feeling ashamed at not understanding the full extent of my condition. Worse than that, I've had to hear my Dad in tears thinking his daughter is potentially losing her life.

Now understandably, the public take their news from whichever sources they can - whatever is fed to us we generally lap up like hungry kittens without too much thought to whether or not it is wholly accurate. That doesn't make it ok, it's just human behaviour. But when these articles are incorrect and/or misleading it can be difficult to overturn these opinions.
My friends and family have felt from reading these stories that I've been keeping information back and not expressing the full and DIRE consequences of my illness. This isn't the case. Of course I do hold some things back - like the fact  that I feel 99% rubbish 99% of everyday for example - because why would I want everyone I love to feel miserable due to something outwith my control? Crohn's is MY condition and happening to MY body so I don't want to waste the time I have in complaining about every aspect of my seemingly failing and geriatric body.
When symptoms/causes/outcomes of life with Crohn's are reported in the public domain it can be quite hard to deal with. It feels a bit like batting away a pesky fly when people start telling me what I have to deal with. I am knowledgeable on my illness because I have to be. I have to learn what my body can and can't tolerate because I want to get better. I want to help my doctors as best I can to get me to a point where I can manage my illness as effectively possible.
Where Crohn's is concerned knowledge is power. News and information are invaluable to gaining a wider understanding and acceptance of the condition. Knowing what your loved ones cope with on a daily basis is incredibly helpful in attempting to grasp the struggles faced by sufferers. Please ask us. We are not ashamed and not embarrassed - you shouldn't be either. Educate yourself but be wary when faced with horror stories. We have enough of those in our own bathrooms on a daily basis.

Thursday, 20 February 2014

Crohny No Dae That?

One of the most infuriating aspects in living with chronic illness is the seemingly constant feeling of having to explain yourself. Although people on the outside know that you aren’t, and won’t be getting any better, it doesn’t seem to stop their consistent confusion when things don’t improve.
I often feel that I’m making excuses for myself. I tell white lies that I’m feeling better than perhaps I am because it’s usually 99.9% easier than enduring confused and questioning glances when you have to explain that you are still ill.
The truth is no one wants to know you are still poorly; the people around you want to see you well and on the mend. The problem with that is in living with an incurable or ongoing illness there rarely is a point of ‘on the mend’.  That isn’t meant to sound depressing; it’s just a fact of diseased life. It’s hard to express to someone who doesn’t live with a chronic condition just how relentless it can be. Even when you feel ‘well’ it’s still there.  

I’m in the middle of a particularly nasty flare-up. I’ve been on medication and in and out of hospital for various procedures to get my symptoms under control. (Note: ‘under control’ not ‘better’).  All to no avail so far, mores the pity. The medication I’m on has some nasty side effects; night sweats, insomnia, shakes, nausea, mood swings, headaches, bloating, pain, and dizziness, amongst others. It’s beyond irritating when the drugs designed to help you, end up loading on a whole other world of worries to think about. This makes for often painful and tedious conversations. Why are you looking worse when you are meant to be getting better? I thought you were on medication? But you weren’t sick the other day?
It’s annoyingly tiring when you are sick and fed up with the simple fact of being sick, to have to explain to someone that things haven’t changed. Most people get sick then better. We don’t. We get mildly less sick. Maybe for half an hour or so then back to uber-sick again.  We still have to live, and work, and do the dishes and every other chore and activity that ‘normal’ people do, alongside trying to maintain upright long enough before passing out. It’s tiring enough in itself living with Crohn’s Disease without having to relay the whole sorry tale over and over again.
I don’t talk about my condition every minute of every day because I’m already thinking about it every minute of every day. It’s on my mind all the time because I feel it ALL THE TIME. When I talk to the world outside my colon I just want to be ME. Not sick. I’m not an idiot of course – I’ll speak up if I need help, but I don’t think it’s in any way constructive to spend the majority of your time outside your own head discussing the finer details of your bowel movements.  
When people question your condition and all its various ‘eccentricities’ it’s annoying and frustrating in equal measures. It’s sometimes for the best however, (for everyone concerned), just to grin and bear it. The alternative is prison time, and I’ve heard the food and activities in there are far from bowel-friendly.

Sunday, 16 February 2014

Bad Medicine

People tend to 'use' their illness for many things. For me, in the first (literal) flush of my illness I was so intensely and unrelentingly sick that I couldn't begin to see beyond just trying to get better. I admit that sounds quite selfish now looking back, but it was all so brand new to me, and terrifying. I had my family, and friends, and just being able to stand upright to think about. 

Shortly after my surgery I started the blog and dipped my toe in social networking. It's been amazing. The main reason for that is because it's given me something positive, out of what began as a very negative part of my life. 
Don't get me wrong here, and I don't know why I feel the need to reiterate this every time, but i'd still be 99% happier without an incurable illness, it's just that now I have it I need to ensure I make the best of it. 
(The other 1% is for another kitten obviously).

Support for those with chronic illnesses online, certainly in the last few years anyway, seems to have spread like wildfire. 
When I first researched the condition I found any aspect of it on the internet to be negative; forums professing you will surely die and how AWFUL your future will be if you manage to grasp your bony hand around life. 
Not really what I was looking for. 
The hearts and flowers and unlimited loo roll aspect wasn't there in the slightest. It made me fearful to open up and talk about myself. 

Mainly because (are you INSANE? THATS TERRIFYING?!) and because there can be such unparalleled jealousy and competitiveness in the medical-world. 
If you've ever had a stint in hospital you will know that there's always, ALWAYS, one patient who is 'sicker' than you. Trying to advise that person you are on deaths door will fall on (probably profoundly) deaf ears. It can be irritating and infuriating and put you off your re-heated ham sandwich. 
It's also completely unnecessary. Why do people feel the need to compete over who is worse off than the other? That sentence itself confirms how utterly ludicrous it is. If people are suffering then let them suffer without fear they are going to be patronised or told how to behave. You're pain is not the same as Mrs Smith in Bed 5. So don't tell her how to feel. And don't tell her she shouldn't be complaining just because you aren't. 

Of course this is by no means a one-fix-suits-all scenario: on the other side of the coin there are those who love to wallow in the abject misery of their lives and constantly gripe about the diseased hand the big guy has dealt them. Those people are unhappy and CHOOSE to be unhappy. I can't get with that. Leave them to it if you can't help and don't let then pull you into it. 

I've tried to help those with the disease in anyway I can. Through my blog and Twitter/Facebook and on the phone/web chats/forums. 
I've found it difficult at times as I forget that illness or not, people are still people. They don't become angelic and almost godlike because they are suffering. It's not the 1990's and we are NOT angels. 
What I mean by this, is that Crohn's or no Crohn's, people can still be mean and rude and presumptuous. It took me an almost embarrassingly long time to realise that those people are not people I want to know at all: so why should I make space for that just because we share an illness in common? It is nonsensical. 

I like to think that people are still essentially good. I was brought up to believe that the Big Good Guy (with the white beard who sits on clouds) always beats the Big Bad Guy (with the red skin and goatee and tail) so I think in the grand scheme of things we'll all be ok in the end. 
(Just to avoid confusion I'm obviously talking about Jim and Bill from my old neighbourhood there by the way). 

On the whole the good far outweighs the bad in the world of Crohn's support- or at least once you do your research and don't just jump on the first bandwagon. It might lead you down a road you can come back from. 

Thursday, 13 February 2014

"You had me at Incurable Bowel Related Disease.."

How do you learn to love something that causes you so much pain? 

It's a common question that married couples and long term partners have been asking themselves for generations. And masochists. Although those two examples probably go (painfully) hand in hand. 

For me, love is many things. A many splendored thing apparently. 
Love is comfort. 
A word rarely associated with Crohn's Disease. In fact i'd go as far as to say that having Crohn's, is decidedly more akin to a toxic relationship on the road to nowhere, than the grand-love-of-the-century wafted about in Jane Austen novels. 
In it's wake, this dysfunctional disease leaves it's recipient bruised, battered and on the rubbish heap. Much more Mr Arsey than Darcy. 

Love is an acceptance of another persons flaws; or what you, in your vanity, perceive as their flaws. And in allowing them to see yours. A good relationship can be a vaguely terrifying mirror; in opening up to someone you show them yourself, and all those nasty little parts you've perhaps tried (or hoped) to conceal for so long. 
Love is trusting in someone else completely. An often petrifying prospect. Love is fear. LOVE IS ABJECT TERROR. 

I jest of course. 
I am in love. 
Like Donna Summer before me, I feel love. One of the things I love most about love are the different levels of love. 
I love my parents with a ferocity that often scares me : the idea of being without that well of emotion would be a massive black hole. 
I love my friends forcefully and relentlessly and I fear for them : if they are unhappy I become motherly and want to kiss all their boo boos better. 
I love my wee cats because OH MY GOD HAVE YOU ACTUALLY SEEN THEM?! 
I love my partner with an indescribable depth : it can be a rush of feeling all at once overwhelming and incredible and absolutely like home, and if I were to stop and think about my life now without that big dude in it, it would be completely barren and utterly blue. And now I'm crying on my keyboard are you happy now?!

But I digress. All this love patter is probably making you rush for a sick bucket by now, and that's just fine because I'm there with you. The thing about illness is, it's hard to love. Even harder, I'd wager, when you are stuck with it 'til death do you part. So how do you go about learning to live in harmony with your strangest of life partners?
For me, acceptance is key. The key to your heart, one might say. But not me because i've already used my quota of AWFUL love puns today. 

In beginning to accept your body's 'flaws' you can attempt to overcome them. No, you will not of course be able to rid yourself of Crohn's as you may wash that man right out of your hair; but you can learn to live in (borderline) harmony together. 
Laugh together; how ridiculous do you feel trussed up on a bed with a camera up your rear end? Very? - Think of what laughs the grand kids will have at those Colonoscopy snaps in years to come! 

Of course not. Keep them in the album where they belong. But seriously, love is in essence the opposite of hate. It says so on prison men's knuckles so it must be true. 
So why hate something you have no control over? Try to make the best of a bad lot : don't spend your life wound up in bitterness at your situation. It's here and it's here to stay so try and get used to that idea. (Funnily enough one of my first draft vow-ideas if I ever get hitched)

Don't waste your life in anger and resentment at your partner in toilet- crime. Grab a packet of wet wipes and get back on the saddle. 
Crohn's, like love, changes everything. But don't allow it to take everything from you too. 

Saturday, 8 February 2014

What a Day

It's my blogs 3rd birthday today!
This is also my 200th post! 
How cute, and almost unbearably twee is all that?! 

PLUS, I purchased a bumper bag of cat litter today for only £2.00! WHAT A DAY!!!

Really, this post is just an excuse for me to celebrate all of you, dear readers, for all your support in this last few years, through what has been an absolute whirlwind since my diagnosis.
When this humble blog began I had just had my first Crohn's surgery and was an unashamed social networking virgin. I dipped my diseased toe into the world of blogging and it's safe to say it's probably been the most positive thing to come out of my condition to date.
Through my writing I've had the opportunity to meet countless inspiring fellow sufferers who have taught me to believe in myself, and helped me keep going when times get tough. The kindness of strangers from all corners of the globe has truly amazed and astonished me. Starting to tear up here thinking about you all actually. Thankfully I've got a bumper pack of cat litter if things get soggy.
Did I mention that? WHAT A DAY!

Writing about Crohn's Disease has opened up a whole world of learning for me. About my own abilities, and my own body. Tips and tricks of the 'sickly' trade have become invaluable, and knowing I have a wealth of knowledge and experience at the other end of my phone/email/twitter,etc, has felt and continues to feel like a massive safety net.
I couldn't possibly single out those of you who have encouraged/helped/inspired me over the last 3years because the list would be far too long, and probably read like a Gwyneth Paltrow acceptance speech, but I hope those of you know who you are. You have no idea how much something you may feel is a simple sentence can be so unbelievably encouraging. Especially those of you who have become firm friends. You are all amazing.

Since I started blogging I've been nominated each year for a WEGO Health award (always the bridesmaid never the bride), had the pleasure (and pant-wetting fear) of speaking at World IBD Day, and started writing a book.
It's all very exciting, and when it feels like my disease is getting on top of me, as it has been in the past few months, I'm reminded that this blog is not only an open diary for me but that, amazingly, it also serves to help some of you too. The feedback I get is inspiration enough to keep going, and if I can help any of you in even the tiniest of ways, it's a start to going some way to repay your kindness. I also got a super deal on cat litter today if any of you are running low. WHAT A DAY.

I'm very lucky to have Crohn's Disease because of all of you.
My family and friends, all the tiny faces I see everyday on my laptop and in my pocket, and those of you who show me daily how to cope with an incurable illness. Those who I get to cuddle/kiss/grope/restraining orders from in real life.
I couldn't handle any of it without you, that's why 3years later I'm still blabbering on.

You really only have yourselves to blame.

Sunday, 2 February 2014

Crohn of the Brave

If you've ever experienced a period of serious, debilitating, and perhaps even life threatening, illness, or, like myself you suffer from a chronic and incurable illness, there's a 99% chance you'll have been referred to as 'brave'. 

Now before I begin let me clarify that there's absolutely nothing wrong with that. It's a lovely word and it's connotations are flattering in the extreme. 
But why 'brave'?

Myself, I was diagnosed with Crohn's Disease; I got sick, and got surgery, and got a little better, then got sick again (repeat to infinity). 
I had no choice in any of it. I just had to grimace and bear it. 
Maybe that's why the idea of 'bravery' is such a bug bear for me; because it's all out with my control. I don't WANT to have to be 'brave', or 'inspiring' or any other similes raided from the Thesaurus of Hallmark. 

I WANT to be 'NORMAL'. 

I don't consider myself brave because I didn't chose this life. The Crohn's life chose me.
I didn't decide to jump in front of a car to save a pensioner from getting thrown to their death. 
I didn't punch a shark in the face to stop it eating a child's leg. 
Pull a morbidly obese man from a burning building wearing a gasoline soaked maxi dress. 
I didn't leave the last Jaffa Cake in the packet for SOMEONE ELSE to eat. 
All of these things I consider to be acts of bravery. Performed out of choice. Selfless acts to benefit someone else. Putting yourself at risk without consideration. 

I 'put myself at risk' when I take medication that gives me horrible side effects, or when I go under the surgeons knife, or use a public toilet in a train station. But I didn't choose to be 'brave'. I chose to accept my lot and get on with it. Because really, what is my alternative? Play the martyr? Die? 
Where's the bravery in that? 

I suppose I dislike the idea of being thought of as 'brave' mainly because I often don't feel it. What's brave about squirming every time you think about getting examined, or squeezing the bottom of the chair when you get another blood test? I regularly feel weak and powerless and that I have no choice but to bow down to my illness. That makes me frustrated and angry and certainly not someone who'd 'inspire'. 

I feel at my bravest when I tell you that I don't feel brave. I often feel anything but. Bravery comes from making the absolute best of yourself in spite of an illness. Attitude is everything. You are limited in your choices so choose wisely; choose to be happy. Now that's inspirational.