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 6^th 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

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. 

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

 

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...

Stress Who

It’s commonly known that stress is a huge factor in exacerbating chronic illnesses such as Crohn’s Disease. It also almost nigh on impossible to avoid. Everyone deals with their own stresses in day to day life, be it struggling with finances, feeling harassed at work, relationship troubles or just not being able to catch that last Pokémon. We all have our own issues and we all deal with them in different ways, so there is sadly no quick fix.

One of my main stressors, (and I hadn’t realised it was such a thing until recently) is being around negative people. This is a stress for me, mainly in my day to day ‘real’ job where the environment can be borderline toxic with reams upon reams of people competing to outdo one another in the misery Olympics. Of course being perma-sick like me can also cloud your judgement on these people, as you feel you have a unique outlook on their particular ‘problems’ – mainly that they need to realise how lucky they are not to live with an illness every day. But that’s just a biased and marginally unhealthy attitude and one I sometimes struggle to keep under wraps.

I’ve tried various methods in dealing with these people from straight up ignoring them to trying to play amateur therapist and everything in between. For the most part, nothing works, because the hard truth is; some people love to complain. They LOVE it. They relish finding misery in the minutiae of daily life then amplifying it for all to hear. But because I know being around these people makes me genuinely unwell, and I have no option but to be around them, I try to do certain things to make sure I’m protected. I can’t heal the world and make it a better place, but I can try to shield myself from some of the bile spewed into my airspace. So here are a few things I try to remember when I feel myself being drawn in:

1.  Don’t Become the Person you despise

By that I mean, don’t spend your evenings complaining to your significant other/friends/cat about said person(s) you find so unbearably negative. Although it can certainly be cathartic to vent your frustrations, all you are doing is perpetuating the misery and continuing a vicious cycle of gloom. Plus, you don’t want to be the one talked about in the same vein do you?

2.  Focus on what you can control

So here I’m referring to your mental state. Don’t allow someone else’s perpetually bad attitude to alter your own. Don’t be disheartened either when you find your amiable attitude doesn’t rub off on others, you haven’t failed, you’re not Mary Poppins, just focus on what you think and feel about certain situations and don’t get tangled up in bad feeling.

3.  Change the record

Sounds an easy task to just change the subject, but it's can be a challenge when someone is in the midst of a rant about this that and the next thing. Tempting someone away from the dark side of every situation can be hard but rather than indulging them it's often more effective to subtly change topic. It's easier than confronting them endlessly on their bad attitude, and they have nowhere to go with a rant when the recipient shows zero interest.

4. Act don't react

If this negative person happens to be a friend of yours, it can be tempting to try and solve their problem in the first instance. It’s of course always the right thing to display a degree of compassion for someone you care for/anyone who seems to be in a harmful spiral, but remember to avoid falling into their habits yourself. If you see a common type of behaviour of theirs approaching then perhaps try and pre-emptively ease it, before they slip into the same depressive slump.

5. Put Your Health First

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

Saved By The Bowel

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

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

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

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

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

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

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

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

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

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

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

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

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

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’       

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

Day 3: #7DaysOfIBD

Day 3:

Well firstly, It’s been an exciting few weeks for me, as I've recently signed a publishing contract for my first book! I am still in shock that it’s really happening. The pessimist in me is still waiting for it all to go wrong but I'm trying to live in the moment and ENJOY IT.

It’s on Crohn’s Disease and is designed around my own experiences. I hope it helps someone like me. I know I certainly would have benefited from something practical and light-hearted when I was diagnosed. Everything seemed so bleak and hopeless. I was bombarded with information (and worse, misinformation) and medical facts and figures that were impossible to take in. But nothing on how to cope day to day. After the initial shock of finding out what was wrong with me,I was still at a loss as to how to ‘live’ with my new disease. I'm hoping that my writing will help at least one person in the same situation.

But I'm not here to plug my book! (Which will be available in mid 2016 ;) ) I merely mention my news as it serves as the precursor to my update of the day. In my whirlwind of nervous excitement and celebration, Crohn’s has snuck up on me. I've been absolutely loaded with the cold for what seems like months now, and my immune system is at an all-time low due to my current Infliximab treatment.

I'm finding this week a struggle and am floored with exhaustion. But the light at the end of my colon is my good news. This is a rare occurrence and although in living with, and writing a book about my disease it’s been my every waking thought, it’s nice to sometimes forget. IBD makes that harder than you think. Almost impossible on days like today when I feel so tired of it all. 

I have to force myself to focus on the good in my life and rest where I can. I hope all of you are able to do the same today my friends! xox

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.

Day 1: #7DaysOfIBD

This week, from the 1^st to the 7^th 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! 

Body Balks

‘Body-shaming’ is big news these-days. It’s a long-standing issue of course, dating back to the days when we used leaves as underwear no doubt. Although if you come from my local area that was only last month. Men and women alike have always been portrayed in certain ways in papers, magazines, on TV and on film. We are supposed to look flawless 24/7. If not we are doing something/everything wrong. We are supposed to preen/starve/paint ourselves to fit the image we see all over the media.

It’s not REAL. It’s not possible.

The world is filled with vanity, where beauty and perfection are portrayed to be everything. Thankfully nowadays more and more women (and men) are speaking out on the incorrect ways they are depicted in the media. Pleasant news, as if we were to attempt to keep up with them it would be a full time (and decidedly un-fulfilling) job. One made harder still when you have a disease like Crohn's.

IBD or any chronic illness, and can change your entire body (and attitude towards it) in a mere matter of hours. When I'm in the midst of a flare-up the disease affects my hair (making it dry, thin and fall out in clumps), skin (dry and sore), makes me bloat to beach ball proportions, gives me hot flushes, makes my face chalk white and makes my body ache all over. You can imagine why it’s pretty difficult to feel confident and attractive when all of that and more, is going down.

Women in particular, have beauty shoved down their pretty little throats everywhere they turn. Sex and supposed 'perfection' sell everything; a gorgeous model in a slinky dress will be used to sell anything from a new Audi to a tube of Anusol.  And we are designed to lap it up. Well of course we are; these women are far more beautiful than us, so logically if we own that product, we too can be just as beautiful. It makes perfect sense! If you choose to ignore the airbrushing, and make-up artists ad hairdressers and personal trainers who all help make this perceived perfection possible. Despite knowledge of all of this, we still continue to put so much pressure on ourselves to look, dress, and act a certain way in order to feel accepted. Usually by people we don't even like.

None of it matters. In 50 years I very much doubt how good I looked in that Instagram filter will matter to me too much. (Mainly because I’ll be dead long before then; I am Scottish after all). But also because my health, and my self-esteem are what matter. I want to be known for being confident enough to express myself, helping those who are less fortunate than me and complimenting a beautiful woman rather than berating and secretly envying her.

In living with this disease I know I will never be conventionally 'perfect'; and that’s FINE, because such a thing doesn’t exist. But I am unique; for example I have a jazzy scar down the front of my stomach; leftover as a memento from where an amazing woman (I'm sure with the help of some excellent male nurses...) saved my life and removed a really, really ugly bit of me.

That can only be a beautiful thing.

In Pain Sight

One of the hardest things to do is define pain. Yet it’s a common aside in living with a chronic illness. It’s also vital in many cases in aiding medical professionals. They need to know the depth of our pain in order to establish how severely (and urgently) to treat us. You’ll be asked to describe pain; rate it on scale of 1-10. Often an incredibly problematic undertaking as it can be so changeable from one minute to the next. Frequently indescribable. When you are in the midst of it you can think of little else other than breathing through it; surviving the next wave.

Over the years I’ve found a variety of ways to vocalise my pain. It becomes a challenge, a game-show where there are no winners:

Nothing feels like it’s in the right place. Awkward, uncomfortable. Unnatural.

Stomach feels like a tornado, spinning, picking up everything around it and throwing it somewhere it shouldn't be.

When you cut your finger then eat a salt and vinegar crisp? That, but in my intestines.

Pain can frequently be hidden under a myriad of other, more immediately troublesome symptoms, such as fatigue, nausea, feeling faint. It can hit more severely as those symptoms improve. Like ticking of the most depressing list in history and finding you've still forgotten the thing RIGHT AT THE TOP. It can feel intense, overwhelming. It can mess with your head and make you feel like you are losing you mind. It can endure and impair every bodily function. It takes no prisoners and gives no relief. It can make you cry through sheer hopelessness and frustration.

Where do you rate that on 1-10? 11?

(Side-note: The first time I said ‘11’ when a nurse asked how I’d rate my pain, I followed it up with a terrible Spinal Tap joke then collapsed in a pool of my own vomit. Apparently. I don’t remember – I was in in pain). 

When you live with a chronic illness you’ll find a LOT of people will ‘question’ your pain. Doctors, nurses, family, friends, employers, even pharmacists. They all want to know you’re not ‘faking it’ or exaggerating. They want to know you aren't trying to take an overdose; trying to get out of work; trying to seek attention – a rare few will want to know you are TREATING YOUR PAIN EFFECTIVELY. Which is GREAT. So many times since my diagnosis I've felt ashamed in asking for help with my pain. 

At the very worst I was in hospital and lasted a good 6 hours on the mild concoction they’d given me for the burning in my bowels before I literally couldn't stand it. I could move, couldn't stop sobbing and was using all my energy not to scream and wake the pensioners I was sharing the ward with. When the nurse finally responded, I had to beg for pain relief which was met with a sigh and a raised eyebrow. I was tarred with whatever brush she wanted and it felt AWFUL.

It also made me acutely aware never to doubt my own pain and certainly not to deny it. I know my own body, and I know when something is wrong. Any raised eyebrows or sideways glances from others are irrelevant. It may make my face redder than a field of poppies against my will when my pain is questioned, but it won’t shame me into not properly treating it.

If your pain is an 11, or even if it’s not - you don’t have to tolerate it. And you shouldn't.