Wednesday, 19 July 2017

My Kind of People


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’? 
Chronic, as it relates to illness, is defined as ‘persisting for a long time or constantly recurring’. Its meaning is clearly definable but the number and variety of conditions it covers is certainly not finite.
Health, and especially frequently poor health, naturally hits highs and lows. Sometimes those lows last for what can seem like the longest time and you struggle to see an end to them. This can be hard enough to deal with on your own, but factor in having to communicate your health issues to the outside world and you’re faced with a whole new set of complications to deal with.  Explaining the intricacies of a condition to an outsider can often be intimidating and challenging to say the least; particularly if you are new to it yourself and still learning. When we do discuss our condition with others and don’t get the response or reaction we perhaps expect, it can be quite the setback. Often living with a chronic illness can feel humiliating. It can be embarrassing, distressing and complex. Often we don’t want to talk about our condition, which is wholly our right, of course, yet sometimes our symptoms make that privilege all but impossible. If it is a visible condition it allows for comment, and that’s something we sadly can’t control.
So pulling on at that thread of uninvited comment, a certain infuriating phrase that sticks in my head, and has been said to me upwards of 168798782784240 times, (at last count anyway) is:
 “There always seems to be something wrong with you…”
This is generally said as an off the cuff, (perhaps feeble attempt at humour?) with a snide undertone. It’s often spoken with a question mark at the end of it; as though we are somehow expected to answer to it. It’s not really deserving of a question mark in my humble opinion as it’s more of a statement of fact. I’m not sure what the relevance of such a question is either, other than to remind us that we are ill, ALL THE TIME. Sadly something we are all too aware of already.  The only answer that could be given to such a bizarre poser (and I find it most effective bellowed through a megaphone) is “YES, THERE IS ALWAYS SOMETHING WRONG WITH ME: IT’S INCURABLE”. But that response only served to get me thrown out of the library and banned from the local church the last 5 times I used it.
It is phrases such as these that are upsetting to someone with a disability and/or illness for many, MANY, reasons. Let me count the ways. (7. There are 7 ways).
1.  It implies we are being untruthful about our health problems. If you have to query in a suspicious tone that expects us to answer for an incurable condition then you nail your ‘I DON’T BELIEVE YOU’ colours firmly to the mast. This funnily enough doesn’t make for a comfortable conversation to follow.
2.  It makes us feel like a nuisance. No person who even remotely cares for another person should make them feel this way. Implying we are using our condition for attention or exploiting it for our own gain is just mean at the root of it.
3.  It singles us out. We don’t want to be sick, and we certainly don’t want to be treated any differently to a ‘normal’ person. Suggesting we are seeking some end goal other than the best
possible health makes us retreat into our shells and that can be increasingly risky for those of us with already wavering mental health.
4.  It makes us feel we are appearing like a hypochondriac. Anyone with a chronic illness dislikes hypochondriacs intensely. We have to eat, sleep and think about illness every day; we don’t need to hear you give us chapter and verse on that one time in 1983 when you had the measles. Just because you perhaps aren’t used to hearing people talk honestly about an incurable condition doesn’t make it any less true when we do.
5.  It silences us from talking about our illness. This is NOT good. We need to talk about our conditions because it allows us to educate, share, unload and learn. The more we remain silent on what we are experiencing the more withdrawn we become and the more ashamed we feel.
6.  It makes us feel embarrassed and ashamed. As above: not good. Something we should never allow ourselves to feel. Chronic conditions can get such bad press; we need to be at the forefront of changing that, not being beaten down by uninformed opinions.
7.  It reminds us that THERE IS ALWAYS SOMETHING WRONG WITH US. Yes, we KNOW.
On the flip side of this ghastly and mildly insensitive coin however, when met with thoughtlessness of this degree, I often try to mentally counter these statements with any positives I can find in them. Easier said than done, especially when you are still clutching a knife to their throat, but if you take a mental (and maybe physical) step back, and look hard enough you are bound to find something.  Let’s throw the negativity over the balcony, crushing it painfully below, causing irrevocable damage, and try that now.
1. Yes there IS always something wrong with me yet I’m still here, being alive alongside you, making me better than you in so, so many ways, and that’s excluding my impressive rack. 
2.  No, nope, sorry I think that’s all I can come up with. Maybe I’m just not a very
forgiving person.
The issue with phrases like the aforementioned “There always seems to be something wrong with you…” is that, whether intended that way or not, they are simply unkind and just so unnecessary. As I’m not (at time of writing) practiced in mind control, I can’t stop people thinking things like that of course, but I can certainly voice my discomfort when they allow the words to leave their lips. Meaning if you’re going to openly say something along those lines to someone with a chronic illness then you should really be prepared for the potentially messy fallout.
What may seem an entirely innocent comment on our condition to you may come across as a not-so-subtle jibe directed at us for reasons we’ll have to retreat into paranoia to discover. You see, it’s not ‘just a joke’ when you make another human being feel essentially lesser.
Kindness is so easy. It’s often found simply in inaction. It’s effortless! You can be kind by just not saying that thing you know would be taken badly should the person it’s aimed at hear you. Just don’t say it! It’s that simple! You can be kind by taking a moment, just one precious moment, to consider the outcome
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. 
Maybe just consider this: Are you the type of person who deliberately sets out to upset and offend another human being whose only crime is not acting or looking the way you want or expect them to? If you answered yes to that then I hope you find what’s missing in your life someday. 
(See how easy it is to be kind instead of wishing you dead?)

Saturday, 8 July 2017

Hello, I Love You

In the early days of our relationship, when my BF and I used to argue (and we used to argue a LOT), I’d often fall down. Flat out flop unconscious. I’d pass out and he’d have to rouse me. It was in equal parts humiliating and frustrating. I didn’t want to do it – it was out of my control, it was like my body would literally shut down at the first sign of stress. This didn’t happen all the time of course, just occasionally, and he’d naturally be panicked, worried (and confused). Perhaps suspicious even; that I was somehow doing it on purpose; faking it.

I wasn’t. But I entirely understand why he might think I was. It was ‘convenient’ – a distraction from the heat of an argument. Only I’d black out, so the argument was 500miles from my mind when I came round.
The funny thing about all of this is I’m so stubborn and defensive during arguments, that fainting in the midst of it is the absolute last thing I’d want to do. As I’m sure you can appreciate, it’s hard to win an argument when you are unconscious.

Nowadays I’m older and (hopefully) wiser, and I try my utmost to discuss rather than destroy when talking with the man I love. I try not to take things personally or immaturely assume that one cross word is going to be the end of us. I try not to ‘win’ in a game where we should be equals. Thank-fully I also no longer faint when we do get into a disagreement.  

This fainting was a direct and physical reaction to stress. My body couldn’t cope with the extremes and would quite literally shut down. I didn’t know I had Crohn’s Disease back then; I just knew the way my body was reacting was far from normal.
But, as all insecure women are inclined to do, I just lost myself in my own head and logically assumed I was insane. Thank-fully I’m not insane, (diagnosis pending I’m sure) but unfortunately I do have a chronic illness. Knowing that stress is such a massive source of my physical symptoms has allowed me to attempt to manage it. Of course that’s much easier said than done.

But in amongst this assortment of symptoms and barrage of knowledge about an ever changing condition where does the other half of me fit in? The man who has to watch as I collapse in front of him, when I throw up after he’s cooked for me, when I writhe in pain in bed next to him? I feel a great deal of guilt in being ‘sick’ and in love with him. I’m too selfish to leave him of course – can you IMAGINE how often I’d collapse if I saw him with another woman?

He doesn’t want me to leave him of course, which is a great relief to both me and our mortgage provider. 

But due to one of our twosome being in a state of permanent illness, he is the one who has to see the person he loves in pain. He is the one who feels helpless and frustrated for me. He is the one who has to spend nights alone when I retire to bed ill yet again. He is the one.

I love him. And I love all the partners of women and men with chronic illness for their unyielding patience and compassion. It must be hard to maintain your own personality when everyone around you asks “How is she/he?” before “How are you?” It must be stifling when huge chunks of your conversations are about someone else. So it’s important we remind the people we love they are appreciated. It might be hard for us to tell you that when we are consumed by pain or our own misfortune, but we feel it. Patients become selfish because we are thinking about illness 99% of our day – we are sad and exasperated and don’t want to feel the way we do. But we are in there waiting for you to pull us out of the doldrums, and remind us we are still more than an illness.

We owe you the same courtesy; so please know that we appreciate you and everything you do, and often everything you don’t do; every time you don’t roll your eyes when we complain for the 50th time in an hour, when you don’t have a tantrum when we cancel a night out, when you don’t show your frustration when you’ve cooked for us and we can’t eat it.


We see it all. We see you, and we love you. 


Saturday, 17 June 2017

Ache News

Eight years ago today I was in hospital on one of my increasingly common ‘investigatory’ stays.  I was incredibly ill, confused, and afraid and certainly without the first clue what Crohn’s Disease was.
I would eventually be diagnosed with the disease approximately 2 months later, followed by my first surgery in the Jan of the following year. To say it was a trying time is to put it milder than an IBD patient’s curry.

I’d been advised I had arthritis in the early part of this same year and was barely getting to grips with that when this new pain began to strike. So loooong story short, within 12 months I found myself with two life-changing chronic illnesses, unsure of my future and facing severe surgery. 

The reason I recall this grim year is a little because it’s been on my mind lately due to feeling distinctly below par, but for the larger part because I’ve been trying to recall how I felt at that time, which let’s face it, wasn’t great. Lately there have been countless articles and ‘celebrity’ statements on IBD strewn across the internet and beyond like disused wet wipes. These articles I refer to make comment on the ways in which patients can ‘cure’ their disease, through means of juice diets, special healing crystals, ‘unconventional’ medicine, veganism, thinking positively, preaching to the Great Lord Zuuuuzo, and COMING OFF MEDICATION, amongst others. 

OK, so some of those may be slight exaggerations for comedic purposes, but in all honesty after reading some of these dumpster-worthy think pieces you’d be hard pressed to establish which ones. I’m not about to slate any one person/publication in particular as it’s not massively helpful and still directs more views towards these outlets they sorely don’t deserve.

All I will say is that it’s very important we as patients/loved ones of patients/just decent interested human beings are selective and careful in what we accept as fact where it comes to IBD, and any chronic illness for that matter. When I hark back to my own state of mind as a freshly diagnosed patient I worry so much about those men and women in the same boat as my own eight years ago. They will be encountering these same articles, (some of which have even been publicised by leading Crohn’s charities), and feeling hopeful there are simple fixes to their condition. There aren’t. IBD is a complex, incurable disease.

Now without that meaning to sound incredibly grim, sometimes we can’t always sugar-coat facts. We shouldn’t. We should never go into any life-changing event with our eyes and ears wide open. Of course I am only too well aware that being diagnosed with any illness is terrifying, whatever age you are or stage in your life you are at. When I got sick I was in a secure and loving relationship; but I still assumed my partner would leave me, because I felt almost instantaneously worthless. That is long since passed, and my attitude to my illness has changed beyond all recognition, but from time to time I still want to scream and cry with frustration that this sickness will never leave.

I don’t want to preach that patients shouldn’t have hope in times of uncertainty and fear; we all should. But we have to be careful about where we take our information from. When we are in states of frustration and vulnerability we shouldn’t have to filter our knowledge to suit – but sadly we do. 

We need to ensure we take information on our illness from reputable sources; stick to our doctors, consultants, medical experts. If you do venture further afield, then stick to articles and blogs with a good following, who focus on aspects of mental-health, relationships and ways to adapt to the illness.

The most important point to remember is if you encounter writing which advises a certain way of life/diet to ‘cure’ you, consider it an instant red flag. If it were curable you wouldn’t need to hear it from a Z-list celebrity in your spam folder. 


Thursday, 25 May 2017

It's a Kind of Magic 

A few days ago, a horrific attack happened in Manchester. I don’t need to describe the events again as I’m sure you have all read about it in painful detail, and really, I don’t want to; it’s so greatly unpleasant and upsetting. Our threat level in the UK is currently ‘critical’ and although I know those are cold hard facts that I know to be true, it still feels as if we are watching this all unfold in a sort of live action movie. 

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

Every-Body's Gotta Learn Sometimes


Something said to me in passing recently got me thinking about the general ‘outrage’ experienced almost daily in living with chronic illness.

 

Personally I’d say I’m a bit of an old hand at this ‘illness’ lark, so I’ve experienced my fair share of insensitive, thoughtless or just plain mean, comments linked to my condition.

 

The most recent of these was uttered by someone I am friendly with and who I respect and even like as a human being.

 

(Names withheld to protect identities/avoid them being chased down the street with flaming torches)

 

This person commented on my weight, and joked that I’m ‘lucky not to be unable to absorb food’. As if my incurable illness is some sort of fad diet that I use on occasions when I want to look Oscar ready.

My gut (pun always intended, don’t you know me at all?!) reaction here was of annoyance. Not outrage, just annoyance and frustration. I feebly tried to convey that it’s not something I consider to be ‘lucky’ to have, and that I am seriously ill. I mentioned that I would love to be able to enjoy food and be a steady healthy weight, but that all of that just came out sounding a little bitter and whiny. Perhaps because the original comment was not intended as a slight on me or my illness, but jokey ‘banter’ implying nothing more than that the joker would like to be a little slimmer. Was I overreacting? I’m sure both of us have different viewpoints on that because we both entered into the conversation with our own (wildly different) expectations.

 

Problem here though is that comments thrown out in jest often have ripples which cause much more damage than any original intention.

 

When sweeping comments are made it often serves to alienate people in one fluid motion. For example how did this particular person know I was happy with my weight? (For the record I’m not; I’d much rather be a little heavier, I’ve been this weight since I was 12 years old – it’s not ideal for a 33 year old woman). My weight also serves as a constant reminder that my health hasn’t improved. If I’m not putting any weight on I’m still not getting the nutrients and vitamins I need to help me reach my ultimate goal of NOT DYING.

 

In the early days of living with chronic illness I found myself in a state of constant simmering rage. I was angry at being stuck with this disease and all its off-shoots, and the smallest of insensitive comments would send  my mood stratospheric. Not good for my stress levels and certainly not good for my health in the short or long term. Nowadays I feel a little mellower. Don’t get me wrong I still feel that sharp desire to behead someone who mocks my afflictions, but that’s natural isn’t it?! That wholesome urge to kill ignorant strangers? ISNT IT??

 

I digress. My point here is that it’s important in amongst the slew of unkind and ignorant comments we hear, to listen for the ones where we can educate. It’s imperative we take stock and put out own health at the top of the conversational pecking order; is it really that vital that we bubble with rage at a colleague who says something we deem inappropriate for example? Can we respond in a way that doesn’t involve knives? All of these questions I try to consider now when someone says something that makes me feel vulnerable or frustrated in living with this illness.

 

The simple fact is people will always upset and frustrate us. We all do it to one another on a daily basis. But intention plays a huge part – we should always stunt ourselves from flying into a rage by taking a few seconds to question whether whatever was said was done out of malice, or cruelty. Was it ‘just a joke’ (albeit one at our expense) and do we really want to waste already lacking energy in diving headfirst into an argument about it?

 

Now when someone says something I find offensive I try to call it out. I tell someone if they’ve upset me, and I make sure I come from a place of love and education when I do it. I don’t tolerate what I don’t deem an acceptable way to discuss my condition. I try to face rudeness head on by meeting it with logic and not just unbridled emotion. It seems to be working for me because I haven’t murdered anyone in at least a month. A new personal best.

 

Ignorance is an opportunity for education, so I try my best to put my rage on the backburner and take it.

But if someone slams the door in my Mum’s face in a shopping centre, you better believe I WILL KILL AGAIN.


Saturday, 29 April 2017

Ari You Gonna Be My Girl?

In a few days my friend Ari is coming all the way from Argentina to holiday in Scotland (and see me). She’ll be staying with my partner and I for lots of the trip and we will even go away on a little mini holiday of our own in the middle. This will be the first time we’ve ‘met’ face to face after talking on the internet for maybe 3 or 4 years.

We chat EVERYDAY.

That’s rare in this day and age (and certainly for me) probably because I don’t feel that interesting or engaging most of the time. Yet this friendship is easy, fun and loving. It puts me at ease and there are no judgements on either side. She just makes me laugh and feel precious and our bond feels effortless. I can’t wait to meet my darling Ari in real life (and prove to everyone she isn’t a 45 year old man from Croydon).

Although I feel I know Ari very well and am not in any way nervous about meeting her, I’ve been thinking about how bold a move it is for her to fly halfway across the world for the sake of a friendship (and vegetarian haggis obvs). Friendships often get harder to make as we age so that’s one of many reasons why this one is so important to me. It came into my life at just the right time and now feels like it (she) has always been there.

I’m in my 30’s now.

So as these things do, many of my childhood and teenage friendships have dissipated over time; wrapped themselves up in quite a neat and healthy bow. Without meaning to sound harsh, some friendships just serve a purpose at a certain time and struggle to survive beyond their particular environment. 
Work relationships for example: once a close colleague leaves, or you move on it can be a tricky tightrope to walk in terms of whether or not you should maintain what may essentially have been kinship over a water-cooler and not much more. Thank-fully I’ve made a few AMAZING friends through work in my own life and I can’t see those relationships ever fading. I think the feeling is mutual on both sides and that’s comforting (and pressure free).

As most people with chronic illness will understand, maintaining relationships can be hard, and often disappointing. When people we love prove themselves to be flaky or uninterested in what is essentially a massive part of our lives it can be a bitter pill to swallow. And we already have enough of them to ingest.

Friends who love us will make an attempt to understand what we are going through, they will check in with us regularly and make us laugh, or simply give us a shoulder to cry on when we need it. With us returning the favour of course. Friendships when you are sick should still be a two-way street; we don’t become patients rather than people, but they may just need some adaption.


When anything changes in life we try our best to accept, adapt and move on, and the same goes for pals. We become adaptable. Adaptipals if you will. You won’t? No problem, I still love you, pals. xo


Sunday, 23 April 2017

Ch-Ch-Ch-Ch-Changes

I’ve been thinking a lot lately about how much a chronic illness can change a person. Typically this phenomenon isn’t unique to a diagnosis of illness of course; a person can ‘change’ for countless reasons. But one of the most substantial is a sudden and drastic alteration to our life. An unexpected shock. A bombshell.

Of course not all diagnoses of illness follow this ‘bombshell’ route – many of us are eventually diagnosed with something after a long and protracted period of sickness. Symptoms build and we experience all the ups and downs and confusion that goes alongside being continually ill, rather than just waking up one morning and finding ourselves ‘diseased’.

It might not seem much of a revelation to talk about a person changing due to illness. It’s not. Being told you have an illness which is incurable and/or will be a continual struggle for the remainder of your life has a huge mental and physical impact on a person.
The bright side of this process of change is that said change doesn’t have to be negative. That’s something I certainly found difficult to grasp for a long time after my own diagnosis; I focused solely on what and whom I’d lost, what I could no longer do and what this illness had done to strip away from who I used to be. It made me sad, frustrated, despondent and so, so angry.

Anger is powerful.

It can be a cause for action, a good catalyst to spur us into productive fight – we use our anger at the injustices of the world to fight back against governments, against unfair laws, against sexism, racism, bigotry of any kind. So undoubtedly anger is not always a bad thing. For someone like myself who has routinely hated confrontation I’ve tried to appreciate that anger is something that cannot (and shouldn’t) be contained forever. It has to have an outlet, and that choice of outlet should be one of our choosing which doesn’t cause damage to you, others or your own heart.

What I mean by that is I’ve been on the receiving end of anger which hasn’t been funnelled in a safe way – where it comes out as spat-out obscenities you’ll regret later, where it comes out through hasty and stupid choices, or through a clenched fist. None of these scenarios end well, and they certainly don’t lend to us being well.

Anger for me is a part of life.

I’m angry a lot and I wish I weren’t. I have a lot not to be angry about – I have a job I enjoy, I get to write, I have a loving family and friends, and I have a partner who without whom I’d surely turn to dust.

But I am angry because I have a chronic illness that causes me to spend my life in pain. I have learned (as best as anyone can) to live and adapt to it, but my condition is ever changing and unpredictable. I’m angry because I am someone who now struggles massively with anxiety and suffers from depression. That may all have come to my door with or without Crohn’s, but nevertheless it’s here and it’s the ‘thing’ I’m angry at.

I don’t think I’ll ever stop feeling some form of anger at being ‘sick’, but like every aspect of this illness what matters now is how I cope with it. How I choose to act and how I live despite it. I hope that that is without bitterness and resentment, because as much as I wish I wasn’t a permanent patient, I am grateful for whom I have ‘changed’ into throughout my sickly-life.

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.