Showing posts with label #invisibleillness. Show all posts
Showing posts with label #invisibleillness. Show all posts

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, 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. 


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.


Friday, 31 March 2017

A Little Bump and Kind


I don’t have daughters. I don’t have children at all for that matter. I have a huge dog, a cat and am soon to have another little kitten brought into our fur-filled household. All of this aside, I do have friends with beautiful babies who are blossoming into incredible little people before my eyes. I don’t doubt that perhaps one day I’ll desire a family of my own; I’m in a committed long term relationship and it’s the ‘done thing’ after all; but for now I’m happy as I am. We’re happy as we are. If that changes, then so be it, but for now; my womb my business.

It is odd the interest in your reproductive organs that grows as we age. I haven’t been ‘blessed’ with a child. I haven’t ‘realised’ it’s what I want yet. I’ll ‘never know until I do it’. It’s common to be left feeling patronised and like a borderline oddity when everyone around you seems to understand what you want and need better than you do.

Childless women are just that for a myriad of different reasons. Some of us are not in secure relationships, some of us are unable to conceive, some of our partners have issues with fertility, and some of us simply don’t want to have a child. I know that is an alien concept to so, so many women. I know that from 99% of the conversations I have with mothers. Thank-fully, my own close friends who have families are much more accepting of what I choose to do with my vagina, and that’s great. They understand that children are not for everyone and that many of us can still (incredibly) lead happy and fulfilled lives without disrupting our sleep patterns and tearing our genitals to shreds.

That said I do feel a strange kinship with my friends who have children. Although it’s not necessarily something I want for my own future, the love I feel for their spawn often takes me by surprise. It helps me understand the unconditional nature of a mothers love in a small way.

I feel the same pull from the young women who message me about their illness. Some to talk about a diagnosis or some just to let me know they appreciate having someone else speak up about IBD/mental health. I feel a responsibility to the girls and young women who follow my blog to be respectful of their choices. Their fears are universal and have been felt by all of us to some degree. I don’t have a ‘fear’ of starting a family I should clarify; I just don’t want to. That doesn’t mean I don’t deserve the same respect as a mother receives. My choices shouldn’t be dismissed or belittled for not conforming to some sort of perceived ideal, and this serves to remind me how important it is that we, as adult women; aunts, friends, mothers; listen and respect the choices of our ‘daughters’.

When we talk to one another we should try harder to listen, truly listen, to what is said (and often what is unsaid) before judging. We all do it, I’m not claiming to be as pure as the driven snow here, but I do think it’s now more important than ever we help young women to grow accepting of themselves and one another. Life is hard and growing up even harder, throw into the mix the possibility of a chronic/mental illness and it can be difficult to see past the next few hours within the day let alone make choices that will affect the rest of our lives. 

So my ‘motherly’ advice (from a certified non-mother) is to simply be kind to your kind.

Today is National Kindness Day (apparently), so what better day to start! xo


Sunday, 15 January 2017

OMG!! SEE ME TOTALLY NAKED IN THIS LEAKED SEX TAPE!!!

OK now that I've got your attention, I'd like to take a few minutes to talk to you about these so called 'click-bait' articles with eye-catching and inevitably misleading titles (of which the above is); and in particular how they can negatively impact on our health.

Now as you may have established by this point, the chances of you seeing me ‘TOTALLY NAKED’ and in a ‘SEX TAPE!!!’ are slim to none. I’m sorry to be the bearer of bad news so early in the blog but you’re the one who clicked, so more fool you! Besides, who even uses the word 'tape' anymore? Get with the program losers! What is this, 1992?!

Anyway, regardless of whether you clicked this link because there was a vain hope of seeing my melons, or because you were just intrigued as to whether I’d finally lost my mind; now that we are all here, let’s get to the matter in hand. Despite the fact that this title is undoubtedly false and deceptive it did its job in getting you to click on the preceding link, maybe to even to hang around and read the whole article. So in that sense it has been an effective tool. Effective yes, yet undoubtedly frustrating too, (in particular for those of you still vainly holding out for a peep at my wares).

NOT HAPPENING PLEASE MOVE ON WITH YOUR LIVES.

But while we can all laugh at the absurdity of this particular title, what of those articles with similarly attention grabbing titles, aimed for the most part at the more vulnerable and desperate among us? Those of us who are perhaps crying out for a 'solution', whatever it may be. Well, here we find my pet hate: the ‘health’ click-bait. In case any of you are still in the dark about what I mean by ‘click-bait’ please see this definition:

“(on the Internet) content whose main purpose is to attract attention and encourage visitors to click on a link to a particular web page”



These are those articles that draw us sickly individuals in with promised 'cures' and quick fixes, advice on someone’s ‘miracle cure’ or how someone else ‘cured themselves with tree bark’ or some other such nonsense. Once clicked on, these articles (usually a mere few barely decipherable sentences) inevitably lead us down the rabbit hole of terrible advertising and ineligible text, over-priced products and bad advertising. Maybe they will follow on where the article left off and attempt to sell us a product that promises to cure all of our ails. The one certainty is that they are definite time-wasters. They offer inane hope to those of us who perhaps have none, they lie and explain our conditions in a vague and unintelligible way, they grope in the dark for anything they can grab on to in order to gain an audiences favour. Just like your Mum.

In my humble opinion, any article that struggles of CORRECTLY SPELL the name of the condition it writes about, promises a ‘cure’ it can never prove, admonishes patients for a perceived lack of effort, undermines our suffering, or simply insults us in a roundabout way, is GARBAGE.

So my own advice would be to avoid these headlines and their preceding hogwash ‘journalism’ unless they come from a reputable source (or a QUALIFIED DOCTOR). And if you find yourself drawn in by an article promising you the world where your health is concerned (yes EVEN if it contains the promise of a bare naked chest), pull out immediately. As the Actress said to the Bishop. 


Saturday, 31 December 2016

HAPPY NEW REAR!


It’s time for one of those 'end of year' posts we bloggers love to write (and you dread to read)!

And what a year it's been.

 

HORRIFIC. 

 

I won’t even begin to go into the changes we’ve undergone with Brexit here and Trump over there, because I don’t want to projectile vomit all over the screen.

 

We've played a seemingly endless game of 'Who's Dead Today?' this year with almost everyone in the public-eye quaking in their boots at the mere sniff of a cough that they'll be 'next'. Of course for me the hardest of these 'celebrity' deaths was my beloved David Bowie. I genuinely sobbed when the news hit and felt the same grief I would for a loved one. It seemed so utterly confusing that I would mourn someone I've never met, but the depth of feeling I had for his music (and the shock of his unexpected death through illness) hit me more than I could have expected. I suppose with a sudden and unanticipated death such as his, it hit a lot of his fans in a similarly painful way. So many other deaths followed, that this year switching on the breakfast news each morning seemed like opening the world’s
most depressing advent calendar.

 



The next big setback in my year came when our beloved cat passed away. We knew he was poorly and would in time be heading to that giant Cat Scratcher in the sky, but his death was very sudden and still came as a big and heart-breaking shock. Our beautiful boy was so special and such an intrinsic part of our little family that his loss is still felt around the house. The loss of a pet can be surprisingly heart-breaking: when they are such a huge part of the family it takes a while to adjust to him not being home. 



 

But for me certainly 2016 has not been all bad. And really as we know, it’s all about ME.

 

This year saw me quit my job of over 10 years to take on a new challenge closer to home and allow me more time for writing and working on book 2! Scary but incredibly exhilarating, and definitely the right decision.

 

This leads us on neatly to the next big emotional event in my 2016: The publication of my first book! GO YOUR CROHN WAY came out in May and was a whirlwind of anxiety and joy. It was a surprisingly emotional time for me for many reasons; because it was a reassurance I wasn't a terrible writer, because it was coming from a place where I could hopefully help others in a wider way, and because it was a painful part of my life being transformed into something positive. We had a wonderful book launch (The Crohn Way Soiree) which was one of the best night's of my life. Excluding that time a taxi appeared just as the heel on my stiletto broke. I've had such good feedback from patients and their families alike that's it's made my heart swell. It’s been well received so far, I’ve been on radio, in papers and a local MP has even put forward a motion to have it mentioned in Scottish Parliament! This is about the only level of fame I could tolerate without exploding into a ball of anxiety and feeling the need to wear makeup everyday/brush my mane so I’m pretty happy with that :)



 

I’m currently working on book two and it all seems pretty exciting and that I’ve found where I want to be in life which is incredibly comforting.

 

The year ended for me on a pretty low note as I’ve been advised my treatment is no longer effective and my body is fighting against it (again). So back to the diseased drawing board. I spent most of the lead up to Christmas in hospital and it was extremely disheartening, just the idea of being properly ‘sick’ again. Tests and procedures and hospital food; none of us want it. But I was lucky enough to get home for Christmas. Now just awaiting more of the same, scopes and tests until we know what may work for me where others haven’t. I’m trying my best to think positive about this as I know I’ll get there, just stuck in limbo at the minute.

 

2017 will hopefully be healthier for us all.

 

For me, this year despite many, MANY setbacks, I have achieved something I never thought I would, I’ve made a brave decision or two, I’m in love and loved and HAPPY. Good health will follow, and if not, I’ve got all the love I need to help me through it.

 

Your support, however small or large this year has meant the world to me!

I love you!

Happy New Year everyone! xox

 

Sunday, 11 December 2016

Holy Moly

A few recent conversations with people I love and admire (and who also happen to be religious) got me thinking about faith and living with chronic illness. I should begin by mentioning that I am not religious myself. At all. I was raised Catholic, and I do still hold on to certain elements of my religious upbringing. Such as trying to treat people with kindness, treating those as you'd like to be treated yourself, and valuing and nurturing love. These are all aspects of my character I can attribute to both my wonderful parents and the bleeding into my life of Catholicism. If Jesus will pardon the pun.

But recently I've pondered how different my handling of my disease may have been had I continued down the path of that of a practicing Catholic. Because I don't feel a belief in any 'higher power' or am drawn to any form of organised religion, I wonder what that must feel like in comparison to my current lifestyle of taking each day as it comes. I suppose the element of my religious past I’ve held onto most would be feeling guilty for absolutely everything. This includes eating a delicious and/or expensive meal – I’ll feel guilty about the indulgence and the pain it’ll undoubtedly cause my purse and intestines. That’s fine I guess, a little guilt never hurt anyone and it certainly puts a halt on me doing anything that might actually warrant 25 Hail Mary’s and a Holy Communion afterwards.
I don’t want any of this to sound patronising or disrespectful in any way. I would never question why people I love/abject strangers feel a need or calling towards religion. It’s a choice; just not one I’d choose. In much the same way you wouldn’t question my undying love of Jon Hamm. DO NOT QUESTION MY UNDYING LOVE OF JON HAMM.

I blindly put my ‘faith’ in doctors. I have to. I don’t believe in a specific Higher Power, I don’t have an alternative. That’s my choice, of course. But for me it’s all I have. I’m often secretly envious of those with a strong faith in God/Aloe Vera/whatever. Not because I feel at a loss without something to believe in, but because I wonder how different life must be for those patients who do. Does having a deity of some sort to reach out to make pain and suffering easier to tolerate? I imagine it is a comfort; at least that’s what I’m led to believe from those around me. Any form of comfort with a chronic illness is a blessing. I take my comfort from my loved ones. I ‘believe’ in them, and in their ability to soothe my anxious mind. They are tangible, and real, and around. They forgive my occasional bad behaviour and understand it comes from pain and anxiety, they don’t expect a penance for it, and I return the understanding just as wholly.

With a chronic illness, and especially in talking so openly and publicly about it as I do, patients are often subjected to a seemingly endless ream of ‘miracle’ cures. I have a tendency to pooh-pooh these ‘cures’ in much the same way I do religion. Maybe without even realising how that may appear to those with a strong faith. I’m well aware that rubbing my every orifice with Aloe Vera may not necessarily go and in hand with attending mass. (Although, I’m still stoically of the belief that neither would ‘cure’ me). There is a difference e between a spam email trying to sell me dodgy diet pills and a caring friend/family member offering me comfort by sharing a belief they hold dear. I need to see that more often perhaps, instead of being so overtly dismissive.

I don’t feel I’m missing out on anything because I don’t believe in God, I just don’t ‘get it’. But then  I don’t have to, just like you are totally allowed to believe in whatever the Hell you want too. If Jesus will pardon the pun. Again...


Tuesday, 1 November 2016

#HAWMC - Day 1

It’s the first day of this year’s WEGO Health Writing Challenge (#HAWMC)! I wasn’t too keen on taking part this year as I’m working on a new book alongside my full time ‘proper’ job and have been feeling physically lower than a worms bra strap. But I figured it might be a good way to keep the writing momentum going as well as getting some much needed inspiration from my fellow health writers taking part!
So anyways todays writing prompt is as follows: 

Let’s get to know one another! What drives you to write about your health? What do you want other activists to know about your condition and activism?

Well if you are reading this chances are you already know a little bit about me and my writing (HI MUM), but if not then allow me to inform you of what you have SORELY missed. I live with several chronic conditions, the most prevalent being Crohn’s Disease. I was diagnosed with arthritis age 25 then Crohn’s shortly after – since then I’ve developed chronic migraines, nerve damage,  Gilbert syndrome, anaemia, low blood pressure, anxiety etc etc to infinity.

I started blogging about my experiences of life with Crohn’s Disease in 2011 shortly after my first surgery. Since then I’ve been nominated for/been finalist in several blog awards, and have had my first book based loosely on my blog published in May of this year! (it's called Go Your Crohn Way and availability from all good retailers FYI) ;) 

But coming back to the prompt: what I’d ideally like others to take from my writing would be a feeling of comfort, camaraderie and a decent laugh every now and then. I’ve always written in the hope that I can help educate and inform people on how it feels (physically and mentally) to live with incurable illness. I want to remind patients and their families it’s possible to thrive despite a chronic condition and not just ‘survive’. My drive to keep writing comes from hearing and seeing others stories, and just how difficult they find adapting to illness. There is always, ALWAYS someone who needs a little kindness. Incurable illness never ends so I keep writing for myself and for others in the hope some of that kindness rubs off. Pass it on, it feels great! X


Sunday, 25 September 2016

By The Book

I haven’t been blogging as regularly as I might be lately as my writing time is occupied writing another book. I’m really excited about this one and putting much more pressure on myself to make it brilliant and funny and genuine.

The first time round I had nothing to lose in writing a book – I wanted to do it to achieve a dream and to help people come to terms with an IBD diagnosis or just to give long term Crohn’s patients maybe something to smile at. I took my time in approaching any publishers because I genuinely didn’t think anyone would look twice at it, and to be totally honest I was afraid of having to face the knock-backs! But it turns out I didn’t receive any of those and the publisher I went with has been just brilliant to work with.
Getting a book out into the world with no knowledge of the industry, marketing or public speaking is no easy task so I’m proud of myself for all the work I put in to making it happen. Obviously my loved ones played a big part in that too but I’ve already thanked them enough privately to restraining order proportions.

So now I am working on book two and it’s strangely even scarier than the first time. What if no one wants me this time? What if I’m a one hit wonder? What if I hate every word I’ve written? (the 3rd one swims about in my head EVERYTIME I sit down to write).  

But that’s where I am with that: trying to make something readable and enjoyable and HELPFUL and consistently filled with self-doubt. But I guess that just makes me an author. If you’d like to be first to know any book news and aren’t my Mum or lover then you can sign up to my mailing list if you’d like! Click on this helpful link -

http://kathfantastic.weebly.com/go-your-crohn-way.html

I'm also thrilled to have been nominated again this year in the WEGO Health Activist Awards! I'm up for both Hilarious Health Activist and Best in Show: Blog. Thanks to everyone who nominated me! If you want to cast your vote by way of an 'endorsement' you can do so to the right of this post or on my website. Thanks! 

http://kathfantastic.weebly.com/crohnological-order.html

Health wise things aren’t too great at the minute, I’ve been pretty floored with a nasty sinus infection that I can’t seem to shake. My immune system is so low that the minute I start to improve someone just has to sneeze within 20 miles of me and I’m flattened again. My partner isn’t loving having to sleep with Darth Vader, but we all have our crosses to bear. Infliximab is still going well, so far so good, so I’m counting the days to next week when they pump me with more of the good stuff. And also Infliximab.  


But enough about me, how are YOU? 



Monday, 29 August 2016

Rest In PJ's

A very important aspect to bear in mind when living with chronic illness is 'self-care'.
Firstly, I appreciate that may sound hippy-ish, and may inspire someone who doesn't eat kale or drink pumpkin lattes to feel increasingly nauseous, but at the core of it ‘self-care’ really just means looking after number one. 

In the least selfish way possible, it's vital to ensure that when you feel at your worst (and even when you don’t) that you take the time you need to help yourself feel as well as you can. Now of course that doesn't necessarily mean immediately calling your boss and throwing a 4week sick note at him so fast he gets a paper cut. It just means it’s important to remember that there are things you can do to ease the pressure of a day to day life with a chronic illness. For example: REST when you need to rest. It may sound ridiculous but this is often the most difficult for me. It seems to come exceptionally low on my list of priorities. I’ll always have something more pressing to do first. Then I came to the realisation that really that means I’m placing my own health pretty low down the rung on the ladder of life. And really, although a support network around you is imperative, it’s also vital to value yourself and your own body.

I've begun to try and act accordingly now instead of pushing myself to my body's limits and beyond. For example, if I’ve had a busy day and I’m into a new realm of exhaustion, I’ll find 20minutes to take a nap. Previously I would have made a million and one excuses not to: it's almost dinner time, I don't want to be rude and leave my partner alone, my favourite TV show is on, the moon is in Venus, etc, etc. Now I try to act on my body’s demands and feel better for it.


Looking after yourself may not make you feel massively different physically; it may only serve to allow you to feel a little more rested and give your triple AAA’s a well-deserved recharge. But that’s not really the point. I find it has a greater impact on mental health. It allows you to grant yourself permission to ‘be ill’. You don’t have to excuse yourself for something you have no control over, you just have to adapt to it and sometimes let it win a few battles. You still take the gold in the end; you just do it at your own pace. So put down the dish-cloth and pour yourself a delicious glass of bowel prep, you deserve it! 


Tuesday, 2 August 2016

Stress Who

It’s commonly known that stress is a huge factor in exacerbating chronic illnesses such as Crohn’s Disease. It also almost nigh on impossible to avoid. Everyone deals with their own stresses in day to day life, be it struggling with finances, feeling harassed at work, relationship troubles or just not being able to catch that last Pok√©mon. We all have our own issues and we all deal with them in different ways, so there is sadly no quick fix.
One of my main stressors, (and I hadn’t realised it was such a thing until recently) is being around negative people. This is a stress for me, mainly in my day to day ‘real’ job where the environment can be borderline toxic with reams upon reams of people competing to outdo one another in the misery Olympics. Of course being perma-sick like me can also cloud your judgement on these people, as you feel you have a unique outlook on their particular ‘problems’ – mainly that they need to realise how lucky they are not to live with an illness every day. But that’s just a biased and marginally unhealthy attitude and one I sometimes struggle to keep under wraps.
I’ve tried various methods in dealing with these people from straight up ignoring them to trying to play amateur therapist and everything in between. For the most part, nothing works, because the hard truth is; some people love to complain. They LOVE it. They relish finding misery in the minutiae of daily life then amplifying it for all to hear. But because I know being around these people makes me genuinely unwell, and I have no option but to be around them, I try to do certain things to make sure I’m protected. I can’t heal the world and make it a better place, but I can try to shield myself from some of the bile spewed into my airspace. So here are a few things I try to remember when I feel myself being drawn in:
1.  Don’t Become the Person you despise
By that I mean, don’t spend your evenings complaining to your significant other/friends/cat about said person(s) you find so unbearably negative. Although it can certainly be cathartic to vent your frustrations, all you are doing is perpetuating the misery and continuing a vicious cycle of gloom. Plus, you don’t want to be the one talked about in the same vein do you?
2.  Focus on what you can control
So here I’m referring to your mental state. Don’t allow someone else’s perpetually bad attitude to alter your own. Don’t be disheartened either when you find your amiable attitude doesn’t rub off on others, you haven’t failed, you’re not Mary Poppins, just focus on what you think and feel about certain situations and don’t get tangled up in bad feeling.
3.  Change the record
Sounds an easy task to just change the subject, but it's can be a challenge when someone is in the midst of a rant about this that and the next thing. Tempting someone away from the dark side of every situation can be hard but rather than indulging them it's often more effective to subtly change topic. It's easier than confronting them endlessly on their bad attitude, and they have nowhere to go with a rant when the recipient shows zero interest.
4. Act don't react
If this negative person happens to be a friend of yours, it can be tempting to try and solve their problem in the first instance. It’s of course always the right thing to display a degree of compassion for someone you care for/anyone who seems to be in a harmful spiral, but remember to avoid falling into their habits yourself. If you see a common type of behaviour of theirs approaching then perhaps try and pre-emptively ease it, before they slip into the same depressive slump.
5. Put Your Health First

There may come a time, regardless of your persistent efforts to help, when you should consider what you are getting out of a certain friendship and how much of it is draining vital life force from every fibre of your being. If a relationship revolves around one party’s negativity you’ll find yourself a verbal punch-bag, that’s when it might be time to cut ties where possible, or at the very least put some distance between you both. Health and particularly mental health is IMPORTANT and being made miserable and stressed regularly is a strain we just do not need. 

Sunday, 17 July 2016

Saved By The Bowel

I was walking my dog today, he had a bit of a poorly tummy (bit of a running theme in our house) and he unfortunately threw up on the way home. This was on the path on the way into my street and just happened without warning. He was sick, I petted him and after he was done he trotted away quite happily and carried on with his day. However the look he got from a woman across the street stayed with me for the rest of mine.

She looked utterly disgusted. She shook her head and looked at me as if I’d just stripped naked and danced the cha-cha in church. I HAD just done that but she didn’t wasn’t there and that’s beside the point. The point is, she looked as though he had been wrong to be ill in public. In her eye-line.  As if I should have somehow stopped him.

Now I know he’s a dog and you’re probably thinking what does this have to do with IBD, but it was a moment that made me feel the same way I’ve felt many times in living with chronic illness. Embarrassed, ashamed, and ANGRY. You see these ‘moments’ happen a LOT in living with health problems. Here are a few from my (never ending list) of embarrassing moments since I got sick for reference:

-          Stripped down to my bra and pants for an MRI and walked into the room only to be reminded it was for my head only so I didn’t need to take anything off.

-          Threw up on a bus full of people into my BF's hoodie then stuck my face into it in some vain attempt to hide, in the process covering my face in my own vomit.

-          Passed out as soon as a needle hit my arm then threw up all over myself.

-          When my arthritic knee gave way when I was crossing a main road and I had to direct traffic around me. 

-          The time the tube containing my latest stool sample rolled out of my bag in a hospital waiting room under the chair of an old woman.

I could go on for another 56645451354854 examples but I don’t want you to get dumped/ fall asleep/ burn your toast /whatever, on my account. My point is that having a chronic illness often causes ‘embarrassing’ moments. Moments you’ll undoubtedly laugh at later, but in the moment you’ll want the ground to swallow you up.

The main issue I have though is that other people tend to make these moments embarrassing; they judge. They look at you with pity, or confusion or even disgust. They think your illness should be dealt with behind the safety of a hospital-ward curtain, where your sickness doesn’t have to offend their eyes. They have a rule book of ‘done things’ and you throwing up in the street/ on a bus/ on them isn’t one of them.  

But what do they think we are thinking? Well we mainly feel ashamed because they are staring at us like we’ve just arrived from the Planet Zod, we feel vulnerable because they are looking at us with disgust, and while we are trying to focus on simply putting one foot in front of the other we suddenly find ourselves in the position of trying to consider YOUR feelings. Those of an abject stranger. Then we get ANGRY because IT HAS NOTHING TO DO WITH YOU.

The point I’m trying to make is that people with a chronic illness can’t always hide away for fear of offending you. We shouldn’t ever have to. Bodily functions and ‘accidents’ happen to everyone, some more than others perhaps, but that’s our problem not yours. How much of a tit do you have to be to take offence to someone else’s misfortune? A triple-G-cup-sized tit that’s how much.


So when someone is vulnerable and you don’t know the full story, if you can help, then you should do that instead of look on in horror like you’ve just seen your own reflection in a puddle. Also maybe be more mature than that last sentence, and try to bear in mind that when things happen we maybe can’t help it. Having an invisible illness can be hard for so many reasons, please try not to make it harder for us just because it’s visible to you.