Showing posts with label #Crohns #pain. Show all posts
Showing posts with label #Crohns #pain. Show all posts

Saturday, 26 August 2017

Man-ILL-Festo


Manifesto
Noun;
A public declaration of policy and aims, especially one issued before an election by a political party or candidate.

Man-ILL-festo
Noun;
A public declaration of aims from a diseased person, a mishmash word I just made up which has no basis in reality.

If you know anything about me, or have read almost anything I’ve written, you’ll know that I love a pun. I’ve you’ve read my book Go Your Crohn Way, you’ll have established it contains over 5015435 puns (that’s an approximation only). Some people love the puns, some hate them. They are the marmite smeared across my pages. But as the best writers are always telling us, ‘write what you’d want to read’ and I CAN’T EVER QUENCH MY PUN-THIRST.

Anyway I mention this merely as I’ve started the blog with yet another one. Sorry pun haters but I can’t always be what you want me to be.

So, what is this ‘Manillfesto’ I speak of? Well I’ve been thinking a lot lately about what I can do ‘better’ in the way I approach and manage my illness. Of course there are a myriad of things out-with my control, (having chronic illness in the first place being the main one of those), but there are a few small but powerful ways I’ve found I can help myself be the best and happiest version of me.  
[Most of these are just sensible rules for life for everyone to be honest so feel free to follow my manillfesto policies regardless of your health status lads].

-          TALK: don’t bottle up how I am feeling when I need help/comfort/company.

This is a continual issue for those with chronic illness as we often find it less emotionally exhausting to simply whip out “I’m fine” or the like when asked how we are. This is no one’s fault; it’s just often so much easier than explaining our every gripe and symptom again and again. It’s honestly tiring enough experiencing it all without feeling the need to vocalise it. However ‘I’m fine’ doesn’t really resolve anything when it’s used inaccurately. All it serves to do is worry the person on the receiving end (who probably knows you’re not fine anyway) and stops us from getting the support we might badly need. So I’m trying to limit my use of an erroneous “I’m fine” for emergencies only (i.e. when in the midst of a colonoscopy)

-          PROACTIVELY SELF-CARE: make time to make myself feel better

Self-care doesn’t have to mean completing 45 Yoga DVD’s then downing 15 Kale smoothies. It can be something as simple as finding what makes you feel comfortable and relaxed and actively making the space in your day for it. For me I love a hot bubble bath, headphones on, candles lit, channelling my inner Barbara Cartland and coming out barely conscious and a shade of lobster not yet discovered by scientists. So I try to make time a few times a week to have my precious soak. It’s also a nice way to physically relax achy joints and let your brain slow down. But if you don’t have a bath you can do other things; read a good book, paint, draw, watch a box set, go dogging, whatever makes you feel happy.

-          STICK TO AN ADULT BEDTIME: develop a regular sleep routine

This is important for many reasons, and more of a challenge than you might think. Those of us with chronic illness often find what should be horizontal bliss more of an uphill struggle. We often find getting enough sleep difficult depending on our pain levels, nausea, bathroom issues or medications. For example when I was on steroids I slept for about 5minutes over the course of 5months. When I did sleep through the sweats I’d dream of murder then wake up wanting to carry it out. I didn’t follow through on any of the dream-murders you’ll be pleased to hear. So try and ensure you stick to a suitable bed time and get enough where you can, it gets easier over time once you get into a regular pattern. Keeping a track of your sleep patterns is also useful for tracking flares and symptoms and for assisting the police in their enquiries regarding local murders.

-          TAKE A LUNCH BREAK: everyday, no excuses

This sounds minor but it’s very important. Most days I work through my lunch, eat my desk (when I remember to eat) and am lucky if I’ve had 15mins of a ‘break’ in a full day. This stems from work pressure, and a little anxiety about how much time I might spend in the loo from one day to the next. Regardless of my bathroom habits I’m still LEGALLY entitled to a break so I should be taking it without question or guilt. This is a habit I, and many of us need to break. Getting away from the desk/phone/whatever you’re chained to also helps to clear the head for an hour. Unless you are chained to someone else if you are a bungee instructor for example then please ensure everyone is safely on ground level before making your Pot Noodle.


So, some basic but important points to remember there. Little changes go a long way; prioritise, look after numero uno and make the best of each day even when you might feel like death is coming up the rear faster than an experienced Gastroenterologist. 


Wednesday, 9 August 2017

Eat, Drink and Be Poorly

When you have a bowel disease the relationship with food can be, at the very least, a complicated one.
In my mind and in my heart I LOVE food. I love the smells, the sights, the taste of it. I love the comfort it brings, the happy memories it evokes, the new experiences it allows. But my stomach HATES it. My stomach physically despises it. Rejects it faster than a 3-legged-puppy at a dog shelter. (Which is something for the record, I would never do)
And therein lies the issue – the one place where food should find its happy, nourishing home before starting its journey into the sewage system, is stunted by an intense, repellent disgust for anything I choose to shovel into my cake-hole.
Food and the partaking in eating it, may seem initially like such a basic human need that we can often lose sight of how wonderful an aspect of life it can be. We associate often unknowingly, food with socializing, with blossoming romance, cultivating friendships, nurturing our children. It is associated with being part of something. This eats into (pardon the pun) a common issue patients with chronic illness have; feeling on the outside of things.
For me the idea of going ‘out for dinner’ is great. I love thinking ahead about what I’ll wear, scoping out the menu in advance to see what looks delicious, anticipating the great conversation I might have in a cosy environment. But then, much like a selfish lover, that thrill disappears as quickly as it comes.
I am then met with the stark reality-reminder of what might actually happen; I’ll worry about what I can wear to disguise the inventible bloating that comes after one morsel, I’ll panic over what I can eat that doesn’t contain an ingredient that will cause me pain (clue: nothing), I’ll worry about a potential lack of bathrooms or my tables’ proximity to a bathroom, and worst of all, I’ll worry about ruining the evening for my companion before the night has even begun. All this anxiety serves [can’t stop won’t stop with the food puns] to put a dampener on what should ideally be an exciting and fun prospect.
Much like any bad relationship, when you love something that causes you nothing but pain you must learn to cut all ties. Not quite as easy with food, due to that pesky aspect of needing it to stay alive.
Food is an inescapable part of life, so in order to avoid an early meet and greet with the Grim Reaper, some form of adaption must take place. We must learn to fit it into our life in a way that causes us the least mental and physical torture. No easy feat. Or should that be no easy feed?! Haha ha ha no you’re right probably not.
For me there has been no ‘diet’ I’ve found to absolve my symptoms (and believe me I’ve looked). Over time I’ve established the main foods and drinks which I know will particularly upset me, I try as much as I can to cut these out. Often IBD is so utterly unpredictable that ‘safe’ foods cause just as much discomfort as others; this is a particular gripe of mine, especially when it takes so much will power not to eat what I love.
On the whole my appetite is as elusive as a vegan at a cattle market. I generally don’t crave food: against my will I’ve conditioned my brain that ‘food = pain’ and this is a hard mentality to break out of. Don’t get me wrong I still eat and drink as much as I am able, I ensure I stay hydrated when I am unable to tolerate food and I seek advice when food is off my proverbial menu [don’t take on the pun-queen unless you want to be humiliated] for longer than I’d like.
I suppose this blog is just a reminder you are not alone in seeing food as an uphill challenge. What may seem like an unthinking aspect of the day can be a stressful and anxiety inducing experience for others. So don’t beat yourself up if you struggle to finish your plateful, just be sensible, patient with yourself and your body and take care of yourself. And if you ever see me eating soup in a steak house please don’t judge.




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. 


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.


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. 


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! 


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. 


Thursday, 12 May 2016

Book Up A Storm

I've neglected the blog a wee bit lately. Sorry about that. But with good reason! 
I’ve been so busy with book promotion, (how weird is THAT sentence?!), my real life full time job and stuff at home in my personal life that I feel like I've barely stopped to catch my breath let alone pen a blog post.

So here's what's happening. My first (and hopefully not last) book on living with Crohn’s Disease ‘Go Your Crohn Way’ came out 5th May!  

Since my first book was published it's been an incredibly exciting time in my life, a genuine whirlwind and I've cried a LOT of happy tears. 
The outpouring of love I have received since the book was published has been overwhelming and completely unexpected!  Not that I think my friends and family are monsters who wouldn’t support me; but because I have been totally single-minded in focusing on doing the work (of which there is a LOT) to get it out into the world. I hadn’t stopped to think that other people would particularly care, or be in any way affected by something I had written. But at the end of the day I WANT people to be affected by the book: isn’t that the whole point? To raise awareness of an unspoken condition, to help give an understanding of life with chronic illness, and to help those suffering feel they are not alone and capable of living an AMAZING life? YESSSSSSS.                  
I had no idea having a book published would all be such an emotional experience! It’s not just my friends and family who have showered me with praise and encouragement, its people I’ve ‘met’ online, on Twitter and Facebook and through my blog. People I know well and people I don’t. How wonderful is that?
I suppose the subject matter of the book and the fact that it’s so personal has emphasised how people who love me are reacting to it. It feels to me a very cathartic experience; I’ve also found myself in a privileged position of putting something out into the world that may help people feel less afraid, isolated and alone. I wrote this book because it’s something I would have loved when I was diagnosed. I wanted to know that I’d have a life beyond my illness – something I didn’t think possible when i was being pummelled into insignificance with descriptions of my unsightly bowel and medical terms I didn’t understand.
I cannot describe how exciting it is seeing you all with your copies of MY book. When my partner saw his name on the inside cover (it’s dedicated to him, my parents and wet wipes) it was so incredible I wished that I could see his face could stay that way forever.  It’s all such a surreal experience and one I never thought would actually come to fruition. Every day is a treat and I don’t care that the hype will inevitably die down because my book will be in people bathrooms for years to come and I LOVE that fact.
I truly hope you enjoy it. And if all else fails, it’ll make the most luxurious toilet paper. 

Wednesday, 16 March 2016

My Little Brown Book

My first book on Crohn’s Disease will be published in a mere matter of weeks on the 21st May! I’m very excited to share it with you. Here I have gifted you with an extract from it (completely GRATIS!!!!) I know, I’m too kind, I’m just a giver. Hope you enjoy!


‘It’s widely known that very few people are 100 per cent comfortable in discussing their bowel movements, and until I was diagnosed with Crohn’s Disease, I would certainly not have considered myself amongst them. It just wasn’t really the ‘done thing’ in my household. I’m not sure if this mild prudishness goes back generations or was just more of a trait within my own immediate family, but it’s certainly something I became more acutely aware of as my problems in that department began to escalate. I realised I felt vaguely uncomfortable and borderline ashamed about discussing anything untoward that may have been happening below the love handles.

I don’t, in any way, blame my parents for this. I don’t blame anyone, for that matter. It may have absolutely nothing to do with my upbringing, but there was obviously some reason I felt so unpleasant about discussing my own rear end. It’s just one of those things I can’t quite place. This ‘thing’ however, made it decidedly more difficult for me to be as honest as I could with doctors and nurses when they were struggling to diagnose my illness. I felt it was easier to nod in agreement with their suggestions than to express the full extent of the aforementioned ‘uproar’ I was experiencing down there. I wanted to save myself the red-faced humiliation, and no matter how much I was told they’d ‘heard it all before’ I couldn’t escape the fact that I was actually being forced to talk about POO. MY poo for that matter.
This fool couldn’t handle her own stool.
This missus couldn’t discuss her faeces.
This burd couldn’t debate her own tur…you get the general idea.

In Crohn’s Disease a patient’s toilet activities are very important indeed. What ends up in the porcelain can be an incredibly vital clue for doctors in establishing the extent of the disease and its effects on the body. Medical professionals can discover so much from just a small, unassuming stool sample. Not only that, but they can also garner a huge amount of information from simple questioning. All of which means as a patient you really have to get to grips with ‘talking shit’. Normally an absolute BLESSING for me. They will need to know specifics. What consistency is it? Is there blood in it? How much is there, and how often are you going? I’m never particularly comfortable with this kind of bizarre quizzing, but I’m slowly trying to learn to get descriptive about it. In fact I now find that more people around me feel they can openly discuss their own bowel movements, whether I want to hear about it or not. As though I’ve unwittingly become some strange form of poo guru. A Poo-ru, if you will. People have started asking me what it means when this, that or the next thing happens in their bathroom. I absolutely do not profess to be any kind of expert on matters of the rear, however I do have extensive knowledge of various unsavoury scenarios that people tend to think gives me insight others perhaps don’t possess.

Many new (and old) patients also find this type of ‘in-depth’ colon-versation difficult to take to at first. Most of these patients, thankfully, find that they eventually become immune to the discussions with medical professionals that take place around that area. They come to realise, as I’ve had to, that it’s essential, unfortunately, in helping the doctors do their job to the best of their abilities. At the end of the day, it’s our health on the line; therefore we should do everything in our power to help ourselves get better. I often find myself getting incredibly frustrated by the fact that there still seems to be such a stigma attached to Crohn’s Disease. This stigma spreads itself across several other bowel-related illnesses for that matter. We, as humans, are all essentially the same; we all take in food and water in the same way and all expel it in the same way too. So why should we be embarrassed to discuss these things openly? That’s not entirely true of course, humans with Crohn’s often find their bodies (and in particular their bowels) don’t work in quite the same way as those without, however much we would like them too.

When you have been established as a Crohn’s patient, you may find a lot of your doctor’s time can be spent at your rear end. Not a thought I’m sure you, or your doctor, will particularly relish. Colonoscopies and other similar procedures can be invasive and often require ‘probing’. You know – that thing that aliens always do in films when they come down to Earth for a visit. One could certainly say it is an alien concept, for a stranger to drug you then shove a camera up your back passage without so much as a mojito for your trouble. Then, as if that weren’t enough, for you all to sit around and watch the show on a screen! WITHOUT any popcorn. It’s an absolute scandal! I exaggerate, obviously; you do get a mojito (if you go private).’


For more of this nonsense you can purchase ‘Go Your Crohn Way’ when it is available to buy from 21st May (and it can currently be pre-ordered from Amazon). You can sign up to email alerts from my publisher here:





Saturday, 12 March 2016

Go Your Crohn Way

I’ve been having a bit of an existential crisis lately. Not to the point that I’m so much as questioning everything in my life, but more why I have I set myself up for failure. I’m launching a book in a few weeks; I’m throwing a launch party and have been posting the link to said book all over social media in a bid to drum up interest. I’ve told EVERYONE – including the bin-man and local window cleaner. I’m both excited and absolutely terrified in equal measures. I say ‘failure’ because one of the great qualities of my personality is my ability to jump straight to the pinnacle of anxiety by assuming the Worst Case Scenario wherever possible.

I don’t always feel this abject terror. It often comes then leaves just as quickly; much like a selfish lover.

But I do feel it today. I feel a panic of “WHAT ARE YOU DOING!?” / “WHO WILL READ THIS?!” / “WHY DO YOU THINK YOU ARE SUCH AN EXPERT?!” – all valid questions I grant you. Because these queries buzz about my head like doubting Thomases’ around … Jesus? IDK I appreciate I’ve gone off-piste here, but what I’m trying to say is that it makes it harder to focus on why I am doing what I am doing.

I have spent over a year of my spare time writing a book about my experiences in living with Crohn’s Disease because I want to show the wider world that there is life beyond chronic illness. When I was diagnosed I was utterly terrified of what the future held for me; or even if there was a future. I didn’t want to live in constant pain and I didn’t want to be ‘different’. The truth was of course, I always had been. I just didn’t know it. I started my blog to help myself – it was a marvellous and magical coincidence that it helped others – so now I write to help people like you.

I don’t profess to be an ‘expert’ on all things IBD – I don’t have an encyclopaedic medical knowledge and I don’t know what some things/symptoms/medications feel like because I haven’t done/experienced everything. Neither have you.

But I do know how it feels to live with a chronic and debilitating illness. I know how it can and does affect every aspect of your life and I know some ways to make life feel a little bit better. Many of those ‘ways’ involve medication strong enough to flatten an elephant but again I’m not a Doctor here so please seek medical advice before popping pills galore. Primarily talking about your condition helps - especially with people who love you – or/and with people who understand what you are going through.

But haud the bus here, I’m, not giving up all my tips and tricks away gratis! – my publisher would have my (remaining) guts for garters.
So I am probably contractually obliged to say that you can sign up to email alerts for my book Go Your Crohn Way here:


And/or pre-order it from Amazon here:


So while I certainly struggle with the idea of actual real life humans reading my ramblings I hope you know that I write for you and for me; life is tough and I want to make it less tough for you if I can. That’s why with every copy of my book will be a voucher for enough drugs to flatten an elephant.


KIDDING, MUM.