Monday, 30 November 2015

Day 1: #7DaysOfIBD

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

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

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

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

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

Day 1: 
Life feels pretty good right now, I'm happier and more content than I've been in a long time. This is delicious to admit because it's been a particularly testing year and a decidedly difficult few months. I'm glad to feel as though I'm finally coming through a black cloud. I have lots to look forward to and lots to keep me occupied.
Therefore Crohn's likes to remind me it’s still around by stabbing me with abdominal pain whenever I'm even mildly stressed. Like an annoying ex it rears its diseased head every time things are good, if nothing more than to remind me that although i'm fine now, things can still be baaaaaad. [Side Note: for clarification none of my exes are 'diseased', that's all me].

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

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

Tuesday, 17 November 2015

I Myth You

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

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

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

1.      We don’t actually enjoy being ill: Strange as it may seem, illness and all that goes with it is no fun. If we could choose to live healthy normal lives, I can guarantee you that we would. As I learnt from being the lanky girl with no breasts and a penchant for Star Trek at high school; being the odd one out is no barrel of laughs.
2.      Taking time off from work is a stress not a skive: Missing work is often a necessity due to unruly symptoms/hospitalization, and is a major worry when we are forced to lose our income due to issues out with our control. Many chronic conditions are also exacerbated by stress, meaning that putting ourselves in situations where stress breeds, is genuinely dangerous.
3.      We are not exaggerating when describing our symptoms: In fact we are probably minimising. That’s not big or clever by the way, but often our tolerances are different to non-poorly people. For example I’ve had a cold for around 158612574651254 years now and it’s just an annoyance, but for a ‘normal’ person that may be a reason to miss work and mainline Lemsip long into the night.
4.      We don’t want special treatment: You may see us ‘get’ ‘things’ such as additional breaks at work, or disabled badges, a free flu jab, or even just a great deal on loo roll. We don’t ask for any of these things (well sometimes we do because we have too). There is no need to be envious of this – we don’t actually enjoy missing a few minutes work because we are cradling a public toilet or resting a flushing face on a cold floor tile. If I were looking to get a freebie thanks to my illness it’d be chocolate flavoured bowel prep! Amirite?! No, probably not.
5.      Its frustrating having to justify something you don’t have any control over: This is a common aside in living with chronic illness, particularly with the people who either pay your wages or are responsible for your treatment.  With employers it can be intimidating having to explain your actions, when really you often don’t understand them yourself. This was a major difficulty for me prior to diagnosis when I was desperately ill and almost lost my job several times. We understand it is vital that the people we work for have all the facts so they can decide how best to help us thrive at work, but often that crosses a line into accusation which can set our confidence back majorly.

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

Sunday, 15 November 2015

Life, Oh Life

Last month was Suicide Prevention Month. I neglected to post this back then because I was feeling raw, sad and angry myself, about the fact that (much more recently than I’d like), more than one of the people I love most in the world have considered suicide. I feared that because of this I would write something I’d regret later, consumed with panic and sadness.
But those people are still alive as I post this today. And that makes me incomparably happy.
I'm saddened to admit that in my 32 years on this earth I've had more than one friend tell me they wanted to die. Not in that melodramatic “kill me now!/arrrgh I wanted to die!” language that we all use when dramatizing the most inane of situations; but that they genuinely didn't want to live. I've known people who have gone further and attempted suicide, and even worse; those who were successful in those attempts. Every time my heart has broken a little bit more – not because it hurts to think of the grief losing someone would cause me (although that in itself is horrendous); but because I feel an utter failure as a friend. I've struggled to grasp how I haven’t seen someone sink so low, and felt powerless to stop it from escalating. My heart has broken for someone I love feeling so lost and hopeless that they can see no way out. 
I know many people who consider suicide a selfish act. I probably have too, at one point or another in my youth, so I'm by no means saintly here. As a child I heard someone call it ‘attention seeking’ – I couldn't grasp that; how would they know they've gotten the attention they had craved after they are gone? Will whatever deity they believe in fill them in on how many people are grieving? Do they win some holy raffle if the act of ending their life has led to the outcome they wanted? What then? A slow hand clap at the pearly gates?
Everyone who wants to take their own life does so for their own reasons. I can’t begin to generalise and I would never make any sweeping judgements on their motives. But I certainly do worry that the belief that suicide is a selfish act is incredibly damaging, and shows a startling misunderstanding (and ignorance) of mental health issues. It only serves to insult the departed and I believe does more harm than it could possibly do good.
Don’t make someone’s anguish about you.
Personally I currently believe no problem is insurmountable. I know that may sound naïve (and it does). Because I don’t always feel that way, and I know how utterly overwhelming depression, pain, grief, sadness and hopelessness can feel. Right now, today, on a good health day, with a washing done, a shift under my belt and two cats to cuddle, I feel anything is achievable and that anything can be overcome.
But then I don’t feel depressed and hopeless right now. 
That’s the mystery of life: no one feels one way all of the time. Things happen and they change people; sometimes for the better and sometimes, well not so much. My illness changed me and has left in a position where I’ll be forced to fight for my life until the day it ends. That has left me with a different outlook; sometimes negative but hopefully more positive. I want to live, and I want to be well. I appreciate I am not in control of the latter but I most certainly am, the former.
I myself am well aware I am but a tiny and insignificant speck on this massive floating ball we call a home. In the grand scheme of humanity I am a tiny ant. But not to some people. To some other tiny ants I am everything, and I somehow make their lives a little happier just by existing. How incredible is that?! We all hold the power to make another person happy just by being alive! There are ‘ants’ in my life that I love so dearly I could sob with excitement just to see their face after a long time apart, grin from ear to ear just being near them, laugh until I can’t breathe in their company and miss even when they have barely left my side. If we continue with my any analogy then these are the people I would never want to see crushed under someone’s muddy boot. 
I don’t want to offer up any solutions to the horror that is suicide, because I am nowhere near qualified for that – and mainly because there are no one-fits-all answers. When you see someone you love struggling, reach out to help where you can. You have no idea how massive what you may feel a minor effort can be. If you don’t see them struggling; don’t torture yourself that you should have. We can’t always save those who don’t want to be saved. That’s not in any way OK by me, but its life. It can't consume yours. 
The world is a horrifying, challenging, overwhelming and cold place at times, and kindness is a coat we don’t tend to wear often enough. Let’s help one another into it; one arm at a time.

Tuesday, 3 November 2015

Body Balks

‘Body-shaming’ is big news these-days. It’s a long-standing issue of course, dating back to the days when we used leaves as underwear no doubt. Although if you come from my local area that was only last month. Men and women alike have always been portrayed in certain ways in papers, magazines, on TV and on film. We are supposed to look flawless 24/7. If not we are doing something/everything wrong. We are supposed to preen/starve/paint ourselves to fit the image we see all over the media.
It’s not REAL. It’s not possible.
The world is filled with vanity, where beauty and perfection are portrayed to be everything. Thankfully nowadays more and more women (and men) are speaking out on the incorrect ways they are depicted in the media. Pleasant news, as if we were to attempt to keep up with them it would be a full time (and decidedly un-fulfilling) job. One made harder still when you have a disease like Crohn's.

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

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

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

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

That can only be a beautiful thing.