Thursday, 17 August 2017
Wednesday, 9 August 2017
Wednesday, 19 July 2017
Chronic illness is used as such a ‘catch all’ phrase these days. It covers a myriad of illnesses, diseases and disabilities. But then couldn’t all of those words be used in the same vein? Don’t all chronic illnesses ‘disable’ us in one way or another? Make us feel ‘diseased’?
possible health makes us retreat into our shells and that can be increasingly risky for those of us with already wavering mental health.
of your words. If you have an inkling that what you are about to say to another
human being may be mean or insulting then just don’t say it. NO, you won’t
receive an award for it, but you also won’t receive a black eye, so swings and
roundabouts. Think bad thoughts by all means; we ALL do that. It’s one of the silent joys in life. But in much the same way you wouldn’t follow up saying “I’ll kill him” with then committing
ACTUAL MURDER, you can think we are lazy (for example), without actually
accusing us of being so.
Saturday, 8 July 2017
Saturday, 17 June 2017
Thursday, 25 May 2017
It’s almost too impossible to comprehend the level of depravity and evil some people are capable of, and practically on our own doorstep.
What does come out of these tragedies is the resolute power of the human spirit. Its always so heartening to see people go above and beyond to help others in situations such as these, where really we act without thought for occasions we could never have prepared for. The way humans act when under extreme pressure, or in abject danger is almost overwhelming in its beauty sometimes.
When these moments happen I wonder if I am a good person. I wonder what I would do if faced with someone in pain or in a situation where I had to act now or run. Of course I would like to think should a situation such as this arise I’d do everything and anything I could to help another person, but we never quite know do we? I wonder if I could be selfless and put the needs of others before my own. Its what I’ve been brought up to believe should be the case, despite years of adulthood being advised we should 'look after number one'.
Well looking after number one hasn’t gotten us very far thus far. Presidents' aside perhaps.
Not to say I don’t care for myself as best I can, when I can, because I do and it's important to do so. But the idea that we should put ourselves first at every available opportunity grates on me. It's a common attitude and one which serves to alienate.
There are so many people in my life I care for; I love. I can’t even bear thinking about how it would feel if one of them was taken from me suddenly and without warning. It is the definition of incomprehensible.
Therefore I think I know deep down the way I'd act if faced with sudden tragedy - with bravery. Its what I aspire to at least.
It's easy to write off our behaviour when we aren’t called upon to be ‘heroes’. We can shrug off the responsibility or guilt at feeling helpless as we perhaps are not in a physical position to help. 'I wasn't there, what can I do?' Etc. It’s easy to do/think such a thing. We all do it – make excuses to ourselves and others as to why we can’t help.
But we can help one another. Every day. In even the teeniest of ways.
We can simply treat one another with kindness and without judgment.
We can utilise patience where normally we would act with frustration.
We can complement one another where normally we may internalise jealousy.
We can help one another by listening and being a physical and comforting presence instead of making others feel pressured and uncomfortable.
We can do all those things with barely any effort at all because they are all within us.
We don’t have to save lives to make a difference to someone’s life.
(Unless of course you are currently performing a life-saving operation then please stop reading this and continue with your important work).
We can make someone feel great just by being kind to them. That fact alone is so simple yet so effective it genuinely reduces me to happy tears. So when things are painful and hard in any area of our lives, let’s try and reach out to one another with kindness and compassion; it won’t solve any of the worlds greater problems, but it might just make life a little happier for those of us still lucky enough to be around.
Love always, K ❤️
Tuesday, 9 May 2017
Saturday, 29 April 2017
Sunday, 23 April 2017
My heart is full of love and lust for life. I want to live life to the full and I get angry and frustrated when it feels like that life is being stunted or shortened. But as I can’t use my anger to paint banners and march to Parliament to rid myself (and all of you) of this illness, I can use it to remind myself that simply feeling it means I’m alive. If that isn’t something to fight for I don’t know what is.
Sunday, 9 April 2017
Pain is not often the crux of my writing because I tend to favour focusing on talking about things I feel I have some semblance of control over; like my relationships, my mental health and my attitude towards my illness.
Pain is a whole other topic that I don't usually discuss in detail for many reasons; namely because I know a lot of people who are new to this disease read my ramblings and I don't want to terrify them, I don't like upsetting my loved ones, and I like to not think about pain when I can. Often it's none of those things and I simply can't deal with anything but my pain.
Pain is often nigh on impossible to quantify. It's also incredibly difficult to explain to someone on the outside of your own car-crash carcass.
My partner asked me earlier if I was OK when I truly wasn't and I said "Fine... actually no just in excruciating pain" which made him laugh - not because he finds my misfortune amusing, (he's not Christian Grey), but it was a hollow laugh where he acknowledged a bit of relief at me finally catching myself and being honest.
The reason the "I'm fine" often comes into play is because it's easier. Not in the long term I grant you, but in the short omg-i-think-im-dying term. It's exhausting being in pain and the last thing we generally want to do is talk about it.
My hair hurts today. My teeth hurt. How do you explain that to someone who doesn't experience pain on a regular if not daily basis? They think you are overreacting. They don't have anything to compare it to so they work backwards from their own experience and assume you must be exaggerating. We see you disbelieve us. We see you pity us. And we resent it.
We are forced to talk about pain, namely describe it, a lot. We have to do it to help our doctors solve any medical mysteries, to get the pain relief we need, to express why we are unable to do something/someone.
We have to tell if it's 'dull', 'stabbing', 'sharp', 'persistent' and various other words used to describe Law & Order. I don't really know what the majority of these words mean in relation to what I feel but I have to use something; it seems screaming incoherently and performing an elaborate death rattle gets you ejected from the ward and I can't risk that happening again.
The problem with talking about pain when you’re ‘in’ it, is that it allows room for little else other than feeling it. It can be genuinely difficult to even form a coherent sentence when you are experiencing it. I suppose that’s why doctors have developed these charts; the ‘how many out of 10’ and the ilk, for speed and accuracy in treating us. But those charts don’t apply when you are talking to people outside of the doctor’s surgery.
Pain is subjective and can be all encompassing. Tolerances of pain differ from person to person and can even change over time. When someone is chronically ill pain is a daily occurrence and something we don't always wish to wax lyrical about. That's why we try to adapt our lives around it. Sometimes that's not always possible but on good days, good moments, it is.
We might not tell you we're in pain sometimes and that's OK. It's our choice and it might just be our way of distracting ourselves; so please be patient and don't expect miracles from us. Don’t let us see that we are frustrating you if we are. I know that may seem selfish but we honestly won’t have the energy to get into any form of debate with you, from brokering a trade deal between countries to forgetting to take the bin out, it’s all impossible.
Give us a bit of time to feel ‘normal' again once the worst is over and don’t make us feel that we should apologise for it. Even though I’m 99.9% sure we will later anyway.
Just be kind to us, it really is that simple.
Friday, 31 March 2017
Sunday, 26 March 2017
I’ve been thinking a lot lately about ‘faking it’. No, not in the bedroom; my years of shrieking in faux pleasure to please someone are long gone since I met a man who knows what goes where (and cares if I experience joy). What I refer to is more the daily ‘faking it’ we do in living with a chronic illness. We fake feeling ‘well’ everyday of our lives.
I personally haven’t been around 'online' for a wee while. You might have noticed; you might not have. That’s fine. People come and go out of our lives all the time and especially in this digital age it’s sometimes even harder to keep on top of all the people in our real lives and in our phones. So I pre-empt this blog with that wee nugget so the people I love don’t feel any guilt for maybe not having noticed the fact that I’ve been struggling for quite a while now.
The main reason people haven’t noticed is because I’m a good actress. I know how to act happy and well because I’ve been doing it for so long. So long in fact that I often don’t know how not to ‘act’ and just ‘be’. The reason this has been playing on my mind lately is because it’s something I worry has slowly but surely assimilated itself into all areas of my life without my being fully aware of it. This is a long winded way of telling you all I've been feeling blue for a while now. I've been finding life and everything in it borderline impossible to bear and I’ve become tired of hiding that from everyone.
I am the Queen of advocating that we should all be open and honest about our feelings, our illnesses, and speak without fear and without shame about our mental health. Advice I haven’t truly taken myself for quite a while now. The truth is I am feeling a bit crushed by constant and crippling anxiety. I've been unable to feel much of anything. I've been 'play-acting' my emotions. When the truth is that I am not sure what to feel and when. I perhaps portray what I *think* people want to see or what will help me navigate a situation. I paint on a smile when I need to and it fades as quickly as it comes. For a while there I couldn't remember when I last felt happy for more than a fleeting moment.
That, of course, has absolutely no bearing on the people around me. No one ‘makes’ someone depressed. There are aspects of behaviour that can of course exacerbate an already anxious persons' mood but none of that is applicable in my case. No one has done this to me. I haven’t even done it to myself; I’ve just maybe let it happen without interference.
So what to do? Please, please, don’t pity me. I've just been taking a little break from everything to get myself well. It’s hard to stop and take stock of what is making you unhappy and I’m doing that. I’m on medication to help my muddled head and reduce my anxiety and I’ll get there. I'm happier now than I have been in a while just admitting it all. It's good to speak up when you're able, so please do if you're struggling. It's so much more of an achievement than you might think.
So thank-you, and I love you, and I’ll see you soon xo
Thursday, 2 March 2017
- I’ll overthink anything and everything.
- I’ll work myself up into a frenzy about the ‘what if’s’ of any given situation.
- I’ll put off doing things through nerves.
- I’ll stare at the phone until it stops ringing.
- I’ll talk and babble too much to fill what I’ve decided is an ‘awkward’ silence.
Friday, 24 February 2017
Tuesday, 21 February 2017
- I have written and had published a book on Crohn’s Disease which is doing well and getting great feedback.
- I have focused more on nurturing my relationships and this has been wonderful and reaped countless rewards. (No I’m not talking about the bedroom, get your heads out of the gutter).
- Although my health has been a consistent challenge and treatments have failed I haven’t had any further surgery which I take as a big win. *touches all of the wood*
- We got a giant dog! Who makes me incredibly happy, cares for me and makes me and laugh and cry at his cuteness every day.
- I changed jobs and it’s been an incredible boost to my mental health and stress levels.
- My amazing friend Lyndsay gave me a bike! So now I cycle to said new job and have much more time with my family (and longer lie ins) while getting a little daily exercise. Also my thighs could now quite easily crush a grown man’s head.