Showing posts with label #book #IBD. Show all posts
Showing posts with label #book #IBD. 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.




Saturday, 8 July 2017

Hello, I Love You

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

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

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

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

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

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

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

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

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


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


Saturday, 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


Thursday, 2 March 2017

Nerve Agent


I’ve always been shy.

It took me a good few weeks to stop weeping for my Mum aged 5 starting school. I would go beetroot-faced when asked a question in front of the class aged 10, and I’d laugh nervously like a borderline lunatic when a boy so much as looked at me, aged 15.

 

Most of that has dissipated these days, thankfully. Although I do still cling onto my Mum’s foot every time she attempts to leave my house, but like the majority of us, I’m a work in progress.

 

Those childhood nerves and inhibitions may have subsided gradually as I’ve aged and been opened up to more experiences and seen a little more of the world, but they seem to have been replaced with something almost even more intrusive;

 

Anxiety.

 

This wasn’t something I was bothered by to a massive degree ‘pre-Crohn’s’. But it’s something I now often struggle to get a handle on. Unlike my Mothers’ ankle. It certainly wasn’t something I’d have considered to be an ‘issue’ either until I realised it was impacting my own life.

 

There is a big difference from saying you are an ‘anxious person’ to actually trying to make a dent in coping with it.

My anxiety manifests itself in many ways:

 

  • I’ll overthink anything and everything.
  • I’ll work myself up into a frenzy about the ‘what if’s’ of any given situation.
  • I’ll put off doing things through nerves.
  • I’ll stare at the phone until it stops ringing.
  • I’ll talk and babble too much to fill what I’ve decided is an ‘awkward’ silence.

 

Anxiety is a common issue with those of us with chronic illness because we spend a lot of our time thinking about ‘it’. We have a lot of factors to… factor in to our life alongside the normal day to day activities that we all undertake. Whether the issue is with mobility, pain, bathroom worries or mental health issues; we all have our own fears and apprehensions surrounding our illness.

 

Of course getting stuck in our own heads is often dangerous and isolating, so step one in overcoming the worst of this is really in talking about our worries. When we do this we often find they are sorely unfounded and based on nothing more than our overactive imaginations. Not always, but often. When we decide how someone is feeling/thinking about us, we also insult them, and eliminate the chance of them proving us wrong. We push people away through using our own fears as a barrier. Look, I don’t have the answers on how to cope with this, I just want to share with you that you’re not alone in feeling like an insane person from time to time!

 

What works for me may not work for you, but talking is really important. Don’t be afraid to admit you are scared and nervous and that its overwhelming you. It so much more common than you think. People who love you and/or doctors can help to give you clarity on your feelings. Stop beating yourself up for something that is simply a factor of an ongoing illness. It’s not shameful to admit you are mentally struggling; quite the opposite in fact.

 

So the next time someone from Accounts doesn’t say ‘hi’ back to you in the morning at work, maybe don’t spend all day wondering what horrific atrocity you’ve committed against them and accept that maybe they just didn’t hear you.

 

That is the case isn’t it Linda? You just didn’t hear me? LINDA…?!?




Friday, 24 February 2017

Diseasey Peasy


I receive quite a lot of messages and emails from young people who have recently been diagnosed with IBD. It makes me happy and sad in equal measure; happy that they reaching out to talk to someone about their worries (albeit a decidedly unqualified person like me), and sad because they are struggling with something incredibly distressing on top of all the usual, more common yet challenging aspects of ‘growing up’. Some of them are just looking for reassurance and advice on how best to live with a chronic illness; some of them don’t want to live at all. 

 

I do of course reply to these messages, as quickly as I can and with as much information as I can, but I often feel at a loss as to what to say to soothe a young man or woman who’s experiences perhaps mirror my own fears from several years earlier. I try to think about what I wanted to hear when I was diagnosed: what might have made the whole thing a little less scary, and I hit a frustrating brick wall.

 

I was lucky myself in the sense that I was (officially) diagnosed when I was in my mid-twenties. I certainly didn’t feel lucky of course; I was heartbroken, confused and devastated. I imagine it feels that way irrespective of your age mind you, we all have different tolerances and being told you are never getting better stings regardless of what stage in your life you are at.

 

So I suppose what I’m clumsily trying to express is that I feel at a loss at times to help those who are experiencing what I have. What I am.

 

Then I try to take a breath and remember that all I wanted to hear when I was first sick was that life would go on. I still do. Don’t get me wrong – I undoubtedly would not have thanked anyone for spouting that at me at the time of my diagnosis; I didn’t want life to go on if I’d have to carry this disease with me for the remainder of it. I didn’t believe it and I couldn’t accept it. But as I’ve grown alongside my illness (I’m now in my mid-thirties), I’ve found my outlook has changed along with my priorities. All I care about now is my own happiness and that of those around me. My illness is still a huge part of my life and always will be, one that can consume me from time to time, but those moments pass. Chronic illness is a slippery path whereby sometimes we wobble a little, sometimes we can’t get on an even keel, but nevertheless we never lie down to it; we don’t have that luxury.

 

But the truth is, our life does go on. We are incredibly lucky in that sense. We will have to make adaptions to those lives to make room for this illness, we don’t like that but it’s easier than trying to bat it away like a pesky wasp at a jam sandwich. We have to accept it and stop fighting its basic existence. Denial is fruitless and prolongs the period of time it takes to come to terms with having an incurable illness.

 

Don’t get me wrong here though, I’m not implying ANY of this is easy; sometimes I even have a little cry myself when I feel low – I often feel I’m back to square one with this and the frustration of that can be overwhelming. But if I’ve learnt anything since I was diagnosed it’s the importance of talking. Talk to your parents, your friends, your nurse, talk to me! Don’t push yourself into it – there’s no shame in that either; the last thing I wanted to do at first was talk about this with anyone, but eventually that changed and it became more of a comfort and camaraderie than a fear.

 

So please remember that you are not alone.

 

Things will get easier and you will learn to live with this. Like every challenge in life it feels monumental at first, but the more steps you take towards dealing with it the easier it becomes. I’m not in any way saying I love having a bowel disease – I hate it – but it has also taught me boundless things about my own body, its shown me a strength I never thought I could find and its brought me closer to the people I love. It’s made me value my own life, and allowed me an opportunity to help me help you to value yours.

 

So if you take anything from my ramblings let it be this: disease is hard and scary and intimidating, but your life is worth the challenge.



Tuesday, 21 February 2017

Let Them Eat Cake!


My blog turned 6 last week!

 

I know what you are thinking; blogs can’t have birthdays, they are not sentient beings, so why waste decent cake? I hear you! But this particular ‘birthday’ has felt worthy of celebration mainly because I’ve sadly neglected my blog lately. I’ve had a new job to focus on and the completion of a new book I’ve been working on since my first came out last year. Also I’ve been ill. Not front page news that last one I grant you; some might even say it’s what this blog is all about, and yes I appreciate that smarty-pants. But being ‘sick’ can often feel like a full time job in itself and it overwhelms anything and everything. It interferes in work, relationships, your state of mind. It demands attention.

 

But this blog was started as an outlet for me to express my fears, experiences and abject terror at having a chronic illness, and while it still is such a place to allow me to vent or share, it’s become somewhat more of a safe place where I can come to talk openly and without judgement (although my inbox may say otherwise). It has granted me the opportunity to help others simply but sharing my life with you and making cat jokes. So rather than spend this special occasion focusing on the more negative aspects of my illness I thought I’d celebrate this 6th birthday with a little bit about all the good stuff that’s happened in my life since this blog was ‘born’.

 

So here are my 6 happy things:

 

  1. I have written and had published a book on Crohn’s Disease which is doing well and getting great feedback.
  2. I have focused more on nurturing my relationships and this has been wonderful and reaped countless rewards. (No I’m not talking about the bedroom, get your heads out of the gutter).
  3. Although my health has been a consistent challenge and treatments have failed I haven’t had any further surgery which I take as a big win. *touches all of the wood*
  4. We got a giant dog! Who makes me incredibly happy, cares for me and makes me and laugh and cry at his cuteness every day.
  5. I changed jobs and it’s been an incredible boost to my mental health and stress levels.
  6. My amazing friend Lyndsay gave me a bike! So now I cycle to said new job and have much more time with my family (and longer lie ins) while getting a little daily exercise. Also my thighs could now quite easily crush a grown man’s head.

 

So it’s not been all bad since Crohnological Order began. I’m happy and alive and that’s a great start. I’ve been granted some wonderful opportunities since writing this diseased drivel and I want to continue to use what little voice I have to help others. SO thanks for sticking with me for the last 6 years and hopefully beyond! I love you! xox


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!