Sunday, 24 August 2014

Flush Hour

I speak to a lot of people with Crohn's Disease, chronic illnesses and many other forms of life-altering conditions, (both mental and physical).
No, I certainly wouldn't profess to being Florence Nightingale, but I do share many of the same feelings and experiences as people in the same diseased boat as myself. So I find it helps to share knowledge, and try to offer comfort wherever I can. This is generally a two-way street, and that's a lovely safe place to be.
However, what I can stand, and what I notice more and more in my life and in the IBD community and beyond; is when people use their illnesses as an excuse for what they can't do. Or, as a get-out clause from potentially difficult situations. Even worse, to make others feel guilt or pity for them.

Nothing good in life ever came from sitting back and taking whatever is thrown at you. 'Life is what you make it' is about the only 'inspirational' quote I am quite fond of. It's one I've found good to bear in mind when I find myself wallowing in self-pity or taking my anger and frustration out on those I love.
It's true of course that misery and sadness are all a part of life's rich and (unfairly sewn) tapestry, but if we were all living in a constant state of bliss what would we have left to appreciate? We would take everything and everyone for granted.
I like the dark and light of life. All the ups and downs, and that feeling of relief and achievement in coming out the other side of a bad patch. I'm 99.9% sure I wouldn't say that when I'm in abject misery, (or having my colon investigated), but I appreciate the happiness I feel when it comes.
That's why the idea of using your condition as a stick to beat yourself with, never washes with me. Neither does lying down to a life of pain and unhappiness. What would your 65 year old self say to that on his or her death bed? (I'm Scottish so if I live to 65 I'll be pretty happy. All that deep-fried-whisky-flavoured-heroin has taken it's toll).

Having Crohn's Disease hasn't made me 'happy' - it's made me sad and heartbroken, painfully and life-threateningly unwell. It's made my day to day life almost 80% more difficult (I use percentages as an in-joke because I'm 100% useless at maths).
However it's made me see what's important, who I can depend on and made my love-stocks and shares soar through the roof. I congratulate myself on small victories, and try not to dwell on the times when I can't perform as well as I'd like, in all areas of my life, (sorry Dad).

I don't ever and hopefully won't ever, accept that I am somehow less of a person because I have an incurable illness. If I started down that road I don't think I could find my way back. I've swapped my high heels for walking shoes because I'm here for the long haul.

Wednesday, 13 August 2014

Crohn Out of All Proportion

This is a blog aimed at a particular branch of the 'sickly' tree. It's a bit of a nuisance that it's necessary but it's been a hot topic in my life of late so I felt the need to vent. 
Everywhere I look lately people are 'inventing' illnesses. They profess to have horrific and life threatening conditions in order to achieve some unknown goal. To garner attention? Gain sympathy they feel they require? I'm not sure. Whatever the reason, it's incredibly stupid and damaging to those of us who suffer from chronic and/or life threatening illnesses in 'real life'.

I in particular have tried to take the higher ground when hearing these hypochondriacs imagined tales of woe. I've gently sympathised, albeit through gritted teeth, as who am I to know they aren't genuinely unwell? I'd certainly never wish to be accused of jumping to conclusions on what may or may not be wrong with someone as it's something I've experienced on my own rocky road to diagnosis, and it's distressing and frustrating in equal measure to be on the end of someone's suspicion. 

Personally, for someone who has always preferred to fade into the background (apart from my brief hiatus at art school when I dressed like a 1970's hippy), I found the sudden flush of unrelenting attention when I was hospitalised very comfortable. I didn't know what to say to visitors, most of whom were the people I love most in the world. I didn't understand why we couldn't just chat like we did at home, why did they look ashen with worry? I was FINE! They looked ashen with worry because I wasn't fine. 
I was dying. Right in front of their eyes and they were absolutely helpless to do anything but chat about the weather and bring me magazines. 
I didn't like being thrust into this sickly limelight. It made me angry, but I wasn't angry with their attention i was grateful for it, I was angry at my situation and that it was MY illness which was breaking their hearts.

So, I do understand how it feels to have this massive influx of love and Marie Claire's all at once given, then gradually phased back to a more manageable level. When you start to get a little better you go back to being a 'normal' person again and fade back into the crowd. It can be unsettling. It can seem as though you want to stamp your feet like a toddler and shout "I'm still sick!!" But there's no need. The people who care for you know that. They are always there, they just don't need to treat you like an invalid as much now and that's good. It's great. 
For those lacking in love and affection in their own lives I suppose faking an illness could be considered a logical way to grasp some of that attention you crave. But where do you go with that? If you start lying it can be incredibly difficult to stop. And how elaborate do you make those lies? Just like heroin and Nutella addiction, lies can spiral out of control and wreak havoc on your life and everyone in it. So just stop. Aim higher. Try to have the best life possible because you are well enough to do so. Don't wish illness on yourself because you will waste away through resentment and frustration. Focus on what's good in your life and work on that. Like Nutella. Just in moderation.