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

Wednesday, 19 July 2017

My Kind of People


Chronic illness is used as such a ‘catch all’ phrase these days. It covers a myriad of illnesses, diseases and disabilities. But then couldn’t all of those words be used in the same vein? Don’t all chronic illnesses ‘disable’ us in one way or another? Make us feel ‘diseased’? 
Chronic, as it relates to illness, is defined as ‘persisting for a long time or constantly recurring’. Its meaning is clearly definable but the number and variety of conditions it covers is certainly not finite.
Health, and especially frequently poor health, naturally hits highs and lows. Sometimes those lows last for what can seem like the longest time and you struggle to see an end to them. This can be hard enough to deal with on your own, but factor in having to communicate your health issues to the outside world and you’re faced with a whole new set of complications to deal with.  Explaining the intricacies of a condition to an outsider can often be intimidating and challenging to say the least; particularly if you are new to it yourself and still learning. When we do discuss our condition with others and don’t get the response or reaction we perhaps expect, it can be quite the setback. Often living with a chronic illness can feel humiliating. It can be embarrassing, distressing and complex. Often we don’t want to talk about our condition, which is wholly our right, of course, yet sometimes our symptoms make that privilege all but impossible. If it is a visible condition it allows for comment, and that’s something we sadly can’t control.
So pulling on at that thread of uninvited comment, a certain infuriating phrase that sticks in my head, and has been said to me upwards of 168798782784240 times, (at last count anyway) is:
 “There always seems to be something wrong with you…”
This is generally said as an off the cuff, (perhaps feeble attempt at humour?) with a snide undertone. It’s often spoken with a question mark at the end of it; as though we are somehow expected to answer to it. It’s not really deserving of a question mark in my humble opinion as it’s more of a statement of fact. I’m not sure what the relevance of such a question is either, other than to remind us that we are ill, ALL THE TIME. Sadly something we are all too aware of already.  The only answer that could be given to such a bizarre poser (and I find it most effective bellowed through a megaphone) is “YES, THERE IS ALWAYS SOMETHING WRONG WITH ME: IT’S INCURABLE”. But that response only served to get me thrown out of the library and banned from the local church the last 5 times I used it.
It is phrases such as these that are upsetting to someone with a disability and/or illness for many, MANY, reasons. Let me count the ways. (7. There are 7 ways).
1.  It implies we are being untruthful about our health problems. If you have to query in a suspicious tone that expects us to answer for an incurable condition then you nail your ‘I DON’T BELIEVE YOU’ colours firmly to the mast. This funnily enough doesn’t make for a comfortable conversation to follow.
2.  It makes us feel like a nuisance. No person who even remotely cares for another person should make them feel this way. Implying we are using our condition for attention or exploiting it for our own gain is just mean at the root of it.
3.  It singles us out. We don’t want to be sick, and we certainly don’t want to be treated any differently to a ‘normal’ person. Suggesting we are seeking some end goal other than the best
possible health makes us retreat into our shells and that can be increasingly risky for those of us with already wavering mental health.
4.  It makes us feel we are appearing like a hypochondriac. Anyone with a chronic illness dislikes hypochondriacs intensely. We have to eat, sleep and think about illness every day; we don’t need to hear you give us chapter and verse on that one time in 1983 when you had the measles. Just because you perhaps aren’t used to hearing people talk honestly about an incurable condition doesn’t make it any less true when we do.
5.  It silences us from talking about our illness. This is NOT good. We need to talk about our conditions because it allows us to educate, share, unload and learn. The more we remain silent on what we are experiencing the more withdrawn we become and the more ashamed we feel.
6.  It makes us feel embarrassed and ashamed. As above: not good. Something we should never allow ourselves to feel. Chronic conditions can get such bad press; we need to be at the forefront of changing that, not being beaten down by uninformed opinions.
7.  It reminds us that THERE IS ALWAYS SOMETHING WRONG WITH US. Yes, we KNOW.
On the flip side of this ghastly and mildly insensitive coin however, when met with thoughtlessness of this degree, I often try to mentally counter these statements with any positives I can find in them. Easier said than done, especially when you are still clutching a knife to their throat, but if you take a mental (and maybe physical) step back, and look hard enough you are bound to find something.  Let’s throw the negativity over the balcony, crushing it painfully below, causing irrevocable damage, and try that now.
1. Yes there IS always something wrong with me yet I’m still here, being alive alongside you, making me better than you in so, so many ways, and that’s excluding my impressive rack. 
2.  No, nope, sorry I think that’s all I can come up with. Maybe I’m just not a very
forgiving person.
The issue with phrases like the aforementioned “There always seems to be something wrong with you…” is that, whether intended that way or not, they are simply unkind and just so unnecessary. As I’m not (at time of writing) practiced in mind control, I can’t stop people thinking things like that of course, but I can certainly voice my discomfort when they allow the words to leave their lips. Meaning if you’re going to openly say something along those lines to someone with a chronic illness then you should really be prepared for the potentially messy fallout.
What may seem an entirely innocent comment on our condition to you may come across as a not-so-subtle jibe directed at us for reasons we’ll have to retreat into paranoia to discover. You see, it’s not ‘just a joke’ when you make another human being feel essentially lesser.
Kindness is so easy. It’s often found simply in inaction. It’s effortless! You can be kind by just not saying that thing you know would be taken badly should the person it’s aimed at hear you. Just don’t say it! It’s that simple! You can be kind by taking a moment, just one precious moment, to consider the outcome
of your words. If you have an inkling that what you are about to say to another
human being may be mean or insulting then just don’t say it. NO, you won’t
receive an award for it, but you also won’t receive a black eye, so swings and
roundabouts. Think bad thoughts by all means; we ALL do that. It’s one of the silent joys in life. But in much the same way you wouldn’t follow up saying “I’ll kill him” with then committing
ACTUAL MURDER, you can think we are lazy (for example), without actually
accusing us of being so. 
Maybe just consider this: Are you the type of person who deliberately sets out to upset and offend another human being whose only crime is not acting or looking the way you want or expect them to? If you answered yes to that then I hope you find what’s missing in your life someday. 
(See how easy it is to be kind instead of wishing you dead?)

Saturday, 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, 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


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, 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


Saturday, 25 June 2016

Grimace and Bear It

A little thing you may or may not know about me: I’ve got a very defensive personality. I snap easily when I feel I’m being threatened. The arms cross, the brow furrows and the attitude of a moody teenager positively reeks from me. I hate it. I try to stop it, because I know it’s counter-productive and halts any attempt at adult discussion, but it’s sometimes almost impossible to rein in. It doesn’t always happen. But more often than I’d like it does, and I beat myself up about it A LOT.
I’m also insecure about my body – I’m scarred and bruised from surgery and seemingly endless procedures, and medication means my weight fluctuates so regularly that I can go from balloon to pancake and back again in a matter of minutes. When I’m bloated I feel embarrassed and ugly. I feel ashamed of my appearance. (So you see how the defensive personality might cause a problem here; if someone so much as glances at my stomach I am on them faster than Nutella on toast).
I’m well aware this defensiveness and my occasional hatred of my own female form is nowhere near a good attitude to have, but at least it’s real, and honest. I’d love to be a shining example of woman-hood who could wholeheartedly embrace her curves and teach others to do the same: and I like to think I do on the second point certainly; I’m my friends’ biggest cheer-leaders when they doubt their own (unmistakable to me) beauty. Only I can’t embrace my ‘curves’ because (my cracking rack aside) mines aren’t natural. They are caused by a crippling illness. The difference between these two pictures for example is 10 minutes. The first was pre-meal, the second minutes after dinner.

Bloating is painful and very uncomfortable. It’s constricting and makes me incredibly self-conscious. Even around the man I love. I don’t like to see myself looking this way mainly because it never seems to be a true reflection of me; even though it quite literally IS a reflection of me. 
In much the same way my scar did when it was fresh and new, it makes me feel ‘diseased’. I know it’s the not fit for purpose parts of my insides that are causing my physical appearance to be altered and it reminds me of what I’m dealing with. I can’t hide under smocks all my life, I have to grimace and bear it.  
This week I’ve struggled with work as my joint pain has escalated. My arthritis is causing my hands and knees to swell and ache. The pain can be overwhelming and incredibly frustrating. I suffer from nerve damage too, (another fun side effect from chronic illness) and that too has been reminding me there is pain to be found everywhere if I look hard enough. Thanks carcass! Joint and nerve pain make me feel old and I’m not. Combined with Crohn’s bloating I feel like a beached whale that can’t so much open a jar at the minute. Although whales don’t have pose-able thumbs and no call for opening jars I suppose, so one nil to me there I guess.
I’d love to be more accepting of what my disease does to my body but I can’t. I won’t. My body is MINE. So why does it feel parts of it are being controlled by some outside force trying to halt the inevitable process of Jon Hamm falling in love with me?
Of course ALL women bloat. You do. You DO; don’t lie Janet no one believes you. You just put gorgeous filters on your Instagram pictures or stand coquettishly behind vases of flowers/your fatter friend so we don’t notice. That’s fine, whatever works for you; just remember when we don’t admit our bodies are flawed (whatever that means) we alienate our own kind. We tell our daughters and sisters and mothers that their bodies are something to be hidden. So WHAT if you stomach swells after a meal? Would you leave your husband if /WHEN his does the same? No, exactly. 
Letting my body dictate how I view myself is stopping me enjoying the short time I have to do everything I can with it to make myself and other people happy. Sometimes we all just need to power through the self-consciousness. There are several things I’d like to see written on my gravestone when the time comes and ‘DIED ALONE DUE TO BLOAT SELF-PITY, SURVIVED/EATEN BY HER 45814845 CATS’ is not one of them.*

*some potential alternatives:
‘DIED TRYING TO OPEN A JUMBO NUTELLA JAR’

‘DIED AFTER BEING ATTACKED MY A GANG OF KILLER WHALES EXACTING REVENGE FOR A BADLY RECEIVED 2016 BLOG POST’       

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. 

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. 


Sunday, 24 January 2016

Everything Is Beautiful (In It's Crohn Way)

Since I began writing about my condition back in 2010, I've gone through countless physical and mental changes. My outlook on my own mind and body has altered tenfold - sometimes for the better, and sometimes, well the less said about the worse the better. 
Right now I feel good, and maybe even content. My health is improving, my treatment is working, and although I seem to be kicked in the teeth every few days with colds and bugs and the ilk, I'm not in constant and unmanageable pain - which allows me to live a relatively 'normal' life. I've got loads of exciting things to look forward to in the coming months which are giving me purpose I've lacked for a while, and goals to aim for. I'm setting myself hoops to jump through and applauding myself for the little (and large) things I do achieve instead of berating myself for the things I don't.

Perhaps the most telling thing I've discovered in the years following my diagnosis however, is that doing the work on my mind has changed my opinion of my outer-casing too. Becoming mentally happier has made it harder to internally punish myself for putting on/losing weight for example. I've almost stopped worrying how I look; no that doesn't mean I've 'let myself go', but I've tried to concentrate on what the changes inside and outside of my body mean for my health - not merely my vanity. 

Of course, just because I feel better about my body, doesn't mean everyone else will necessarily follow suit. 

Over the years I've been accused of portraying an 'idealised view' of life with chronic illness, I've been maligned for complaining about steroid weight gain because I'm 'skinny', criticised for mentioning I've lost weight because 'well it's easy my body does it for me'. Amongst many other inane and insensitive comments.

It's easy, for the most part, to let this slide over me of course, mainly because I'm so skinny and svelte, built much like a slalom in fact; but the anger tends to rear it's head when I think of others who are perhaps struggling with their appearance due to the toll chronic illness takes on the body. Some people don't find comments like the above so easy to laugh off or tolerate. Some take them to heart and go insular. They stop talking about their illness through fear of judgement or mocking. They feel shame and embarrassment about their own skin and what lies beneath. 

So how to deal with this?

For me, I feel it's important to try to educate rather than take umbrage at insults or ignorance. I can take such an enlightened view you see, as I'm so slim I'm basically weight-less. 
When outsiders make mention of my weight/appearance/startling beauty/comment on what I should or shouldn't do to 'cure' my incurable condition, I begin by mentioning that my weight fluctuates as my illness and medication cause it to do so, and that although I very much appreciate you taking such an interest in my body, I have doctors and a lover to do just that, of which you are neither. 
When I can eat well, I do, and I don't make any apologies for that. I am happy when I am healthy, not 'skinny'. (and as a quick reminder: skinny has never been default for beauty).

Over the years the parts of my body i've hated have been in the hundreds (at least). As a teen I hated my 'flat' chest; as an adult I hated my 'big' bust. I've always disliked my 'big' nose, my 'pointy' chin, my 'squint' teeth, my 'uneven' hips, my 'chicken' legs, my 'knobbly knees', my 'massive' forehead, my 'kinky' hair, etc etc TO INFINITY. 
Then, PC (post-Crohn's) i hated my 'dry' skin, my 'falling out in clumps' hair, my 'bloated' tummy and my 'unsightly' scar. Do you see how everything is pre-cursed with an insult? Why do we do that? Why don't we ever enjoy our bodies?

I gave up hating every freckle on my body when it struck me that I was alive.

If I looked like [enter your own definition of ugly here] or [enter your own definition of beauty here], it didn't matter one iota. It mattered that my heart was beating and my lungs were breathing. It still matters.

I'll continue to talk openly and honestly about my struggle to accept something often impossible to accept because it helps me feel less alone, and because I want YOU to feel less alone. I don't ever want to feel singled out or vulnerable due to something that chose me to inhabit. My body just happens to be an unwitting vessel for an incurable illness: I have to accept that but I don't have to lie down to it. I have to maintain how I want to seen by myself and by others. 

So there you go; having a chronic illness makes me feel pretty ugly a lot of the time, but courage and beauty is more than skin deep. Don't listen to anyone implying you are somehow less of a person because of your disease; you are so, SO much more. 


  





S



Wednesday, 6 January 2016

The Fault in our Scars

The latter part of last year was an introspective few months for me. With the help of some people who love me, I established I’ve spent a lot of my years on earth to date holding onto bitterness and anger over past events and the hand life has dealt me. I’ve spent a lot of time, no, wasted, a lot of time, blaming people/ things /happenings in life for my own misery. I’ve realised I’ve been neglecting to take full (or sometimes any) responsibility for my own actions. Although always unintentionally, relying on having a fail-safe(s) to blame for my own failings has been a pattern of behaviour uglier than a Donald Trump patchwork.
It may of course sound trite and pitiful, all this psychobabble. Especially when it’s coming from a 32 year old woman and not a stroppy teenager, but that’s ok, it’s just taken me a little longer to iron out some of my internal creases. Some people don’t ever look inwards. You would’ve thought I’d done my fair share of that over the years due to numerous colonoscopies; but this time I’m looking at my behaviours rather than my colon. (Attractive as it undoubtedly is).
I’m not trying to batter myself over the head with what I consider to be my failings either. It’s good, all this. It’s actually liberating. It feels good to finally free yourself from the shackles of bad habits, and that’s all this really is – bad habits I’ve fallen into and accepted as part of myself. We all do it; although to a lesser or a greater extent. Don’t get me wrong; I don’t feel that I’m a complete shambles of a woman. I’m not; I’m pretty smart, not troll-like hideous, fiercely independent and armed with a vast knowledge of both cats and David Bowie’s back catalogue. But like everyone I’m not perfect. (Whatever that might be).
Of course there is a point to this blog and not just an excuse to wax lyrical about myself and use this as some sort of forum for psychoanalysis. (God help me if it were…) I wanted to make the point that having a chronic illness may have caused you, or someone you love to fall off the responsibility wagon.
You may not have realised how much of your life is spent feeling angry and bitter. It just bubbles and seethes and occasionally boils over hurting yourself and the people you love. You’ll blame lack of progression in your career, education, relationships or all of the above on being ill. It’s hard not to when it can be so all-consuming. This may last a week, a few months, years or even a lifetime – if you let it.
I’ve tried not to blame Crohn’s for the things that have made me unhappy. But in the past I have. I’ve accused it of holding me back and stopping me doing the things/people that I love. The truth is it DOES hold me back – in small ways such as having to give up parts of my day over to hospital appointments and procedures. Having to give up parts of my internal organs to the surgical waste disposal. Being too ill to have FUN.  
But in order to have the happiest life outside of your disease you have to learn how to slot these changes into your day to day life and let go of some of the anger and frustration you feel. Accepting what you can control causes a domino effect which will only lead you down the yellow bowel road to a happier life.
When you stop yourself from achieving a goal, or fail at something you’ve attempted, be it small or large; stop a minute and consider all the issues that have lead you to this point. Is there anyone or anything to blame but yourself? Is ‘it’s my diseases’ fault’ what you really believe?
I catch myself now. I stop myself before I wind myself up into a Crohn’s VS Kath frenzy. It's cathartic; and calming. If saves my bowels from burning like the Sun due to unnecessary stress, aids happy relationships and stops unnecessary arguments.
When you take a moment to look inwardly it’s like a mirror is shone on others. You see how deeply apportioning blame over taking responsibility can affect lives. It becomes clear who is using the age old argument of ‘my life is so hard because of X & Y’.  Granted that was one of the more awful Coldplay albums but I’m over it now. I can’t continue to blame Coldplay for all of my problems in life, and neither should you.

It’s U2. It’s all U2’s fault. 


Thursday, 31 December 2015

Reelin' In The Rears

It’s that time of the year when we begin to reflect on the past 12 months/drink too much/worry about not having anyone to kiss at midnight/contemplate suicide. Depending on your viewpoint, this ‘reflection’ can involve getting drunk and internally screaming THANK GOD THAT’S OVER (usually my favoured option), or perhaps fondly remembering what has gone by with affection and gratitude.

For me, this year has been difficult, stressful, painful, and WONDERFUL.

2015 began, as most years do, in January with me having been nominated for 4 WEGO Health Awards. I made Finalist in two categories! Beyond my wildest expectations and an honour to be listed among some amazing health advocates!  It was also a joy to see some of my favourite IBD writers take prizes. Very proud to be amongst others raising awareness on such a grand scale.
This past 2months I’ve been nominated in the UK Blog Awards, and for Healthline’s Best Health Blog of 2015. A thrill and a lovely end to a busy year! I don’t expect to win either of these as they are fiercely fought contests, but again I am delighted to be listed amongst such talented individuals!

In May I started my Infliximab treatment. This is the first biologic treatment I have been on, so naturally I was very apprehensive. After bombarding my IBD nurses/consultants with a million and one questions I braved my first infusion. I always prefer to be independent around my health but this time I must admit I was afraid and felt alone. However the treatment has proven successful and is keeping any active disease at bay. I am still floored from time to time and struggle in the weeks leading up to my infusions but so far so good. I understand this intestinal bliss won’t last forever, but I am enjoying it while it does nevertheless.

In August my lovely Mum turned 70! We celebrated with a lovely lunch together with my brothers. She is as vibrant and full of life as she was when I was a child and I am proud to call myself her my friend as well as her daughter.

In September my beau and I celebrated 10years together. A decade with the man I love. By no means has our relationship been a smooth ride, but who can say spending 10 years with someone ever is? Love changes and grows as you get older and I adore living through that with him. 

In October, after a long hiatus due to fear of rejection, I finally started to receive responses from my having sent away my finished manuscript. My book on my life with Crohn’s Disease  was accepted by 3 publishers and I’ve signed with a fabulous and friendly publishing house who are planning to release my book in Summer 2016! I am still in shock to be honest. Every step of the process is more intense and exciting than the last and I am relishing being such a close part of the books’ development. So thrilled for you all to read it – my life and bowels are in that book, and messy as that may sound, I hope that helps even one of you in dealing with your own defunct insides.

In late December, we added a new addition to our growing menagerie (of two humans and two cats) – a massive dawg. His name is Lucky and he’s had a tough old life for his mere 3 years. He’s the softest and sweetest dog on the planet and that’s coming from a well-known cat lady. We are going to give him a great future in a happy, loving home.

So as I head into 2016 I have lots to look forward to and lots to keep me pushing forward. Thanks to all of you for your continued support and love, and know that it’s reciprocated fully. But please, one more restraining order and I’ll be arrested. Happy and healthy New Year to you all, I love you! xox


Tuesday, 8 December 2015

Every BODY Hurts, Sometimes

Everything” - was the am-dram response I gave earlier today to the question, “What hurts?” from a friend. It may sound dramatic and borderline bullshit, but at the time it was a frighteningly accurate description.
Allow me to set the scene: I’d eaten some lunch; nothing wild, no endangered species lathered in butter, no sizzling spicy concoctions. Just some chicken and some salad. Oh and a bit of potato too, but even then I only ate the inside, leaving the skin as I know it destroys me. So, a boring, but non-hazardous lunch – YOU WOULD THINK. But you’d be WRONG. And you can tell how serious I am because I AM USING CAPSLOCK.
Today ‘everything hurts’ is an accurate portrayal of how I am feeling. Boring lunch or no boring lunch.
My bones and muscles ache. My stomach is cramping and pained. My head is splitting. My eyes are itchy.
MY HAIR HURTS.
The list goes on. (But not here, and not right now, because I would like to retain at least some readers by the end of this post). The reason I’ve taken to my blog to electronically whine about all of this is because answering that question today and feeling like a drama queen stressed me out. It frustrated me that answering questions on my disease honestly, often has such dire consequences; even in my own head! I know I am not lying or bending the truth yet I can still feel like a fraud saying it out loud.
How is it possible to feel pain, and then feel shame when audibly expressing it? (I suppose ‘shame’ isn’t the right word; maybe frustration?) A feeling that happiness, and ‘normal’ conversation is thwarted by a constant nagging pain. Crohn’s is that annoying boy who used to pull on your bra strap, or that puddle you step in with suede shoes on. Always putting a dampener on daily life.
It’s possibly the raised eyebrows and the perceived doubt from others imposed upon us when we convey our illness. We look fine after all. I can’t even really blame people for this doubt; I sometimes look at myself in the mirror and even though internally I feel like Satan has set up home in my intestines, I still look a million dollars (well… maybe a tenner). That alone can have even the most diseased women doubting their symptoms. We learn to question our every twinge and hold off from seeking help because ‘it could be worse’ or ‘it has been worse’. But that can also be dangerous.

If we are struggling we should vocalise it. Not to doubt ourselves, or accept doubt from others, but to trust our gut. Even if it’s the gut causing all the drama in the first place. 

Wednesday, 2 December 2015

Day 2: #7DaysOfIBD


Day 2: 
Woke up in a lorryload of pain today. My BF who is currently on holiday, offered to nurse me/do unmentionable things to me if I sacked work and stayed in bed. Unfortunately I am a sucker for punishment and don’t want us to lose our home and cats so grudgingly went to work instead. 
It’s going to be a hard day; excruciating pain at my desk makes it hard to concentrate on the job at hand and slapping on a smile is easier said than done. It can be practically impossible to grin through pain. You can't focus on little else. And don’t even start me on the fatigue! No amount of sleep is ever enough. So when your colleagues arrive and complain of how 'tired' they are, it can often be a major tolerance tester.
As with most days I’ll have my daily dose of ‘suggestions’ on how to best treat my disease. Before 9.30 yesterday I was suggested Manuka Honey and Aloe Vera. On both occasions I smiled and said “well if it works for you that’s great” then silently considered all the ways in which I would gut them and bury them under my patio if I could get away with it/had the stomach for it.
Being offered suggestions on what we should and shouldn’t do is a common aside in living with IBD. What we eat is watched and judged (“should you be eating that?”), how often we visit the bathroom is monitored (“you were away a while…”), how we look (“well you look ok…”), and how often we are unwell is pressed (“but you were sick last week…”). Those are just a few of the enquiries we encounter on an almost daily basis.
Some of these comments can come from loved ones though, and in almost all of these cases; said with care and concern. On the whole I try to remember that the majority of people proffering advice on my illness are doing it with good intentions and a good heart. I'll try to remember that later today when I'm water-boarding them with Manuka Honey.


Monday, 30 November 2015

Day 1: #7DaysOfIBD


This week, from the 1st to the 7th December it's Crohn’s and Colitis Awareness Week. It sometimes seems strange to me that there needs to be a week/day/month to raise awareness of IBD. It's such a huge part of my life now that I can barely remember what life was like B.C (before Crohn’s).

Then I recall my diagnosis all those years ago, and the first time I heard the words 'Crohn's Disease'. I didn't have the first clue what it was; so I know I have to appreciate i'm far from alone in that. There are still people who, when I disclose my illness to them, look at me blankly and with utter confusion as I once did towards doctors. What is this Crohn's that you speak of? And can you explain it in language I might stand a chance of understanding?

There are also those who have heard of it and rather than questioning those in the know, instead have come to their own (generally incorrect) conclusions about what it entails. That's why raising awareness is so important. 

To educate and encourage a dialogue around a debilitating and 'invisible' illness. 

So this week I'll be blogging in a diary style, focusing on how Crohn's affects my day to day life. (Often more than I realise when I take a step back and focus on it). 

Day 1: 
Life feels pretty good right now, I'm happier and more content than I've been in a long time. This is delicious to admit because it's been a particularly testing year and a decidedly difficult few months. I'm glad to feel as though I'm finally coming through a black cloud. I have lots to look forward to and lots to keep me occupied.
Therefore Crohn's likes to remind me it’s still around by stabbing me with abdominal pain whenever I'm even mildly stressed. Like an annoying ex it rears its diseased head every time things are good, if nothing more than to remind me that although i'm fine now, things can still be baaaaaad. [Side Note: for clarification none of my exes are 'diseased', that's all me].

Winter is also a tough time for IBD patients as the cold badly affects our joints and muscles. I have Crohn's-related arthritis and my knees and hands in particular seize up and hurt at the end of/during each day. I fully expect my hands to look like claws by the end of this post for example. 

For a supposed invisible illness Crohn's can make itself so visible that it's almost impossible to forget about. But that's OK. It's just a pleasant reminder that it can't and won't stop me being happy. You may take my bowels but you'll never take my freeeeeeeedooooooom!