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. 

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.

Write On, Write Aff

Here in Scotland a common phrase one may use when they are perhaps hungover, ill, or just generally looking an absolute mess, would be; “Whit a total write aff” 

[translation: ‘What a complete write off’: not currently fit for purpose]

In living with chronic illness you will find yourself feeling and looking like a ‘write aff’ more often than most. I've had a good few 'write-off' days recently. Those days where you find, thanks to illness, all your plans are out the window whether you like it or not. You are floored. Work is a mammoth undertaking; in fact much more than turning over in bed is nigh on impossible. Plans made are cancelled, friends and family are let-down and housework builds up around you faster than cat hair on a silk blouse. (Speaking from experience there obvs).

On my recent series of write-off days, I missed a day of work and spent around 3 full days in bed. Today though…I got out of bed! And even showered! I'll wait for the applause to die down then I'll continue. 

Celebrating small victories is a common aside in living with chronic illness. It may not seem much to praise ourselves for, but it’s important, as we spend so much of our time internally beating ourselves up for what we are missing out on or unable to do for ourselves and others. It’s incredibly frustrating being ill. So, SO many wasted hours. The guilt at missed work, the annoyance at letting those you love down, and the pain and misery experienced when riding the wave of debilitating symptoms.

What I've come to realise though, is that self-care is very important. No, I'm certainly not saying that knowing how vital it is to look after number 1 makes the guilt of missed work or cancelled plans any easier, because it doesn't. Mores the pity. However it’s the sensible thing to do. Always the most boring I know. 

The more in tune you become with your own body the more you know when something is wrong, and the more you know when it’s time to take a step back and let yourself rest. If you manage a little work, or complete a menial task then well done. Just don’t break yourself in two trying if you don’t have  to. 

Learning to take the time you need to recuperate will always be more important than doing the dishes or hoovering the carpet. Besides I've been "unable" to lift the hoover since my last operation, and I intend to ride that particular wave for at least another 12 months. As far as my other half is concerned, hoovering is a ‘write-aff’ ;)  

Hips Don't Lie

The other day, when trying on a series of potential outfits for a night out, I looked in the mirror and did a little twirl. I felt good. I looked good. At least for approximately a tenth of a second. My confidence in my own appearance was then abruptly bombarded with a rapid-fire series of hard 'truths'. Let me quickly run through just a few of those thoughts to give you an idea of what it's like for a woman looking at herself in a pretty dress; 

- Jesus look at your hips one is higher than the other
- Your whole body is squint how is that possible?
- When did your hips get that weird shape? How do we change that?
- Your stomach is sticking out again. GREAT.
- Is that bloat or actual fat? PIG.
- This dress is hanging all wrong. 
- Muffin top ALERT.
- Boobs are squint. 
- Four boobs and back fat.
- Your legs are too skinny you look like you'll topple over. 
- Too much cleavage you'll look loose
- Look at your daft face. 
- ARE YOU INSANE TO EVEN CONSIDER GOING OUT IN PUBLIC IN THIS?
- GET THAT DRESS OFF IMMEDIATELY. BURN IT.

Fun eh?! There's just a snippet of just some of the nastiness that flew around my head in almost the same moment I considered myself vaguely attractive. I instantly felt despondent and resigned myself to wearing a bin bag with a bit of rope tied around the middle instead of ever considering a dress again. But not pulled too tight obviously; I'd only accentuate those lumpy bits. Actually sod it I'll just tie the rope round my neck and be done with it. I'm already in a bin bag so my gargantuan body would be relatively easy to dispose of. 

1 Year Post-Op...

Anyway, a few days passed and I was blessed to receive some random abuse online for "portraying an idealised view" of living with chronic illness. I was advised by this complete stranger that I'm "skinny" and needn't worry about my weight because my "disease does it" for me. 

I instantly felt the confidence I'd lost in front of the mirror return with a vengeance.

I firstly felt angry though, because those comments reminded me that there are incredibly ignorant and rude people in the world who want to bring nothing but misery to strangers. STRANGERS. How utterly inane. It reverted me back to childhood and learning that when a boy is mean to you and pulls your ponytail it's because he really just wants to be your friend/girlfriend and doesn't know how to communicate those feelings yet. Online Neanderthals who bully and insult women by tapping nonsensical rubbish are nothing but idiotic little boys who have no idea who to approach a human being with anything other than bile and ingrained and incomprehensible hatred. 

I don't understand it and can't (and won't) begin to try.

But I do think it's important not to ignore it. I responded to this particular prematurely ejaculated spurt of drivel, by posting a picture of my own "skinny" body and all it's imagined flaws. Not because I wanted to justify myself, but because I couldn't bear the thought of young, vulnerable women being subjected to cruelty simply because they have the courage to enjoy their lives, and love their bodies. 

Have you any idea how heartbreaking it is when you are told you have an incurable illness? Imagine then, that same horror but as a child, or a blossoming young woman. It's difficult enough growing up and being told everything about your body is wrong, without that torture being compounded by an illness that will change your body beyond perhaps all recognition. 


Nobody is perfect; we all say hurtful things about one another. But no BODY is perfect either: why should we strive for 'perfection' when everyone has an individual idea of what that is? How stupid! 
I don't want a perfect body because I haven't got the first clue what that might entail. I just want to be happy. If that means I eat a cake or 5 then who the hell cares? I can't often eat and enjoy food as I'm generally in excruciating pain, vomiting or passing everything but my colon into the bathroom porcelain, so when I have the opportunity to get pleasure from food, I grab it like online trolls grab their penises when Pamela Anderson runs across the beach in Baywatch. (Or whatever kind of woman they consider to be 'perfect'). I don't know what that means, and neither do they because I'd wager the only breast they've encountered in life is their mothers and or a fried chicken one. 

But I digress. My point remains; women, and humans in general, are individuals and we all find beauty in different things. Isn't that amazing? Imagine everyone liking the same thing? How BORING. I'm not saying I'm now 100% comfortable with my own body, but my post-mirror reflection has taught me that it doesn't matter. I don't have to destroy my own confidence; there are always people out there wiling to help out with that one! 
Loving our own bodies despite what strangers/ doctors/ anyone else with a pulse may say is a vital starting place for adapting to any form of illness, and really any form of life. 

We all need to learn to be our own cheerleaders. 
If that's too difficult a place to start then give me a call. I've been told I have great Pom Poms.  

4 years Post-Op, 10 mins into toilet-centered mid-life crisis.

A Room of Our Crohn

The man I love and I have been together for a decade this week. 10 YEARS he has tolerated my terrible jokes, cat-voice and ownership of the toilet. A SAINT of a man.

When I first met him, we worked together, and I was a relatively healthy and active 22 year-old. Well I’d say, ‘officially’ healthy at that point; no doctor had diagnosed me with anything, but I still felt like something wasn't right with my body about 60% of the time, it just wasn't really an imposing issue at that point. We managed about 5 years together as a ‘normal’ couple before my health took a massive slide. I'm no Maths whiz, but by my calculations, for around half of our time together I've been ‘diseased’.

In the first few months after I’d become ill, everything was a blur of anger, frustration and pain. Getting to the bottom (pun always intended) of what was slowly killing me became my sole priority and my love-life and everything else took a self-imposed back-seat. I feared I’d lose my job and feared I’d lose my life. I feared My Love would inevitably realise he’d unintentionally hitched his wagon to a horse who turned out to be dud.  

Living with chronic illness can make you selfish. Not in any way intentionally; but patients will find they are often taken over by a single-mindedness to either get better, or simply to hibernate and close off from the rest of the world when feeling at our worst.
My Love is thankfully a patient man. In ways I often don't realise. He is tender and kind; qualities I know I far too often take for granted. I probably don't notice the majority of the things he does for me; too wrapped up in my own pain. 

I'm ashamed to admit that in the earlier days of my illness (and even more often than is fair, now), I’ll expect him to play mind reader and somehow know my pain, know what every twinge and jerk meant, know how I felt and what I needed; then if he read me wrong I’d internally curse him for his inability to jump through my invisible hoops. Knowing this cycle of behaviour often doesn't make it any easier to cut out either.

Chronic illness is unforgiving and relentless. It’s impossible to ‘grin and bear’. That doesn't excuse treating the one you love with a disposition they don’t deserve of course. My frustration, (and I'm certain I am not alone in this), is mainly in my inability to ‘heal’ myself. My future often feeling bleak, and my loss of ‘self’. Disease takes so much away from you that you are left piecing your jigsaw back together and finding there’s always a missing part. The picture never looks as it should.

When you are ill, and sad, and feel alone even when you are surrounded by people, you can be left feeling you are not worthy of love. I know, (although I sometimes have to remind myself of the fact), that I too am worthy of everything good in the world and more. I want that for My Love and for us. My disease shouldn't define me, or stand in the way of my relationship. I’ll aim every day to continually appreciate the man I share my life with gifting me his care and attention, and remember that love is two-way. Well for some maybe three-way but that’s for a more X-rated blog.

I don’t love my disease of course, but I do love what it has taught me about my own capacity for it. Limitless and immeasurable.

Let Me Entertain Loo

Having a chronic illness is exhausting. 

EX-HAUS-TING. 

No, I don’t just mean the symptoms, of which there are many; the limitless fatigue, the joint aches, the seemingly endless pain and nausea amongst other decidedly less enjoyable ones. 

I'm thinking more right now of the intense schedule of appointments, and various sessions of poking and prodding to varying degrees we have to endure. 

On top of my full time job I often feel I have another profession trying to keep on top of my jam-packed social diary (by ‘social’ I obviously mean MEDICAL DIARY). There is something wholly depressing about having to make room in your diary for FUN. Let me tell you, it’s pretty dismal having to plan your social invites around medical appointments. These treatment sessions, check-ups, procedures, injections and blood tests, ETC, all must take precedence over partaking in an actual social life. It’s difficult enough holding down a job, keeping a home and managing all the normal responsibilities of day to day life, without having to factor in this constant stream of medical happenings. If I could afford it, I’d hire a P.A solely for the purpose of picking up my prescriptions, handing in samples, arranging my hospital appointments with various consultants, nurses and doctors and reminding me to take my various medications on the clock all day every day. It’s a job my iPhone is already fit to bursting with and one too depressing to buy a Filofax for (plus it’s not 1983 when Filofaxes were actually a ‘thing’). 

It seems a trivial factor of living with Crohn’s Disease, and to a certain extent it is. However it’s another aspect of the illness that makes it inescapable even when you are well.

Constantly attending hospitals and keeping track of what should happen to your arms and/or backside and when, means there really is no ‘break’ from chronic illness. There’s so much planning involved that it’s almost constantly in the back of your mind, (even when it’s not in the forefront of your pain receptors).

I feel pretty disheartened when those weeks arise where I have more medical appointments in my diary then plans with the people I love. I hate having to cancel or rearrange occasions due to illness, or because I’ve been trumped by another hospital letter hitting the mat. I understand of course that keeping on top of my appointments is vital, but that doesn’t make it any less infuriating. Nor does it help my cause to be ‘more’ than my disease. It’s a continual reminder for me and my friends that there is no escaping this.

Not to sound melodramatic, (although I’m well aware I do); but when my illness takes over my having-good-times party-on-excellent, is when it really gets me down.

I try now to get proactive about my medical-schedule and make it less of a chore – I leave myself reminders and set myself alarms so it all becomes more of a routine than a burden. I’ve fallen into more of a trap lately of allowing my disease to take priority over the rest of my life. Not something I’ve done knowingly, however since I’ve noticed it happen I’m trying little by little to change it.

A wee bit at a time, to fit in my ‘sick-life’, around my real life.

Not the other way round. The way it should be. You WAIT until I am ready to see you DISEASE. 

Hopefully, like an unwanted admirer it will eventually take the hint and move on. That’s the DREAM anyway. Leaving me, free as a bird to step up my Jon Hamm stalking regime.

Started From The Bottom

As a young woman I always had issues with confidence. Let’s just say I sorely lacked it. I still do, although certainly not to the same extent. This lack of self-confidence wasn’t all in my appearance; (I was a late developer), but also in my own abilities. To do anything really, and certainly not to do it well. Can you imagine?! I also struggled with friendships and relationships as I got older, and probably naively allowed myself to be taken advantage of on more than one occasion. I suppose I assumed (internally) that anyone who wanted to associate with me must have had something a little bit wrong upstairs; in the common sense department. That old 'if you don't love yourself, how can you love anyone else?' chestnut reared its head on too many occasions.

Now of course I love many people. Too many to mention without upsetting someone by forgetting to include them I’d wager. My family, my friends, my love.

I don't love myself as much as I'd like, but maybe enough, now. I tread that fine line between vanity and self-assured. I no longer need or want validation from people around me, or strangers, as I once did. I merely need to be able to look in the mirror and like what I see. Be that a glass or metaphorical mirror.

But what of that elusive self-confidence and living with chronic illness?

I'd say with certainty that my own diagnosis led to several steps back in my search for confidence. I was suddenly thrust from being a young outgoing woman in the prime of her life, to a bed-bound-misery-guts. (Quite literally on the guts front).

I was ashamed of whom I saw when I looked in the mirror: generally Skeletor in heels. I felt 'unclean' somehow. Tarnished. I'd been pushed through the medical ringer and come out looking and feeling utterly washed out. I didn’t even smell like fabric conditioner.

Chronic illness leaves you exhausted. It's a priority in the morning for most of us to GET OUT OF BED, shower and dress in an allocated time. Things which were once done on auto-pilot suddenly become massive feats of superhuman strength and endurance. Most days I'm half way into my bus journey before checking if I've remembered to put a bra on or apply mascara. Our day ahead is almost always entirely dictated by how we feel when we wake up. Therefore where is the time (or enthusiasm) to be found to make an effort to look more like Naomi Campbell and less like Stig of The Dump? It's intangible for me most of the time. 

Lately I've been trying to focus on getting a little fitter. Now that my Infliximab is well under-way I'm starting a little more daily exercise. It's difficult and tiring but I have noticed I'm gaining more energy and feel a lot more positive about myself afterwards. Maybe it’s those happy endorphins or maybe just being proactive helps. I'm not going to become one of those women who only talks about Smoothies and Yoga positions don't worry, I'm just trying to get a little more into the shape and into the state of my mind I feel comfortable in. So far it's working - although I do get a little disheartened on a daily basis when that IBD bloat rears its bulbous head. How's a girl supposed to wear a body-con dress with a baby bump made entirely of mashed potato and swollen guts?

Body confidence (and otherwise) is a constantly evolving process. It can be stunted by illness, and frequently is. It can be knocked down with negativity (from inside or outside) and it can be chipped away at by your own doubts. But essentially what's important is who you want to be. Or even just initially convey. You can take everything a step at a time. Baby steps. Unless I'm behind you in a busy shopping centre, then GET OUT OF MY WAY SLOWCOACH. Don't push yourself to be someone you're not too soon. Let yourself grieve for the former ‘you’ if you need to. I know I did. I often feel like 'Kathleen (Pre-Crohn's)' is a stranger I vaguely remember from my past who used to be a lot of fun then got sick. I don't see her anymore though because she's not important. I look to this new version of myself and how to make her the best I can be, Crohn's or no Crohn's. 
She’s doing pretty well. And so are you xox

Intercourse Of Antibiotics

Before we begin on our sexy odyssey of discovery, let me leave a specific note for my Dad, if I may:

The following post may contain graphic descriptions of your only daughter holding hands and kissing a human man on the (facial) cheeks. Please look away now thank-you xox

So now that the foreplay is out of the way, let’s light a few hundred Yankee Candles, fire on the Barry White and slip under the covers of my latest post…

There are many reasons why sex and intimacy can be 50 shades of a grey area for those living with IBD (and chronic illness in general). Along with the basic initial difficulties in feeling the ‘urge’, due to pain, bloating, depression, exhaustion and a plethora of other issues; there is also a mountain of physical issues we often have to navigate through before even considering getting our paws on our partner. So here I’ll run through a few of the most common issues and some potential fixes to let you get back…on your back, or otherwise.

Stress

For anyone, sickly or not, stress is a very common problem and/or reason for avoiding or simply not wanting sex. For men, sex can often be a stress-reducer, but for women this is rarely the case. Dealing day to day with a chronic illness on top of everything else in life; work, family, home commitments, can be utterly overwhelming, so it stands to reason that doing the horizontal cha-cha is about as far from your mind as enjoyment is to a colonoscopy. In order to feel aroused, you have to be receptive; stress can hinder this, so it’s important to try and work out what your biggest stressors are and focus on how to reduce them. Then cha-cha to your hearts content.

Depression

Certainly for women, depression can make our libidos sink lower than a worm’s bra strap. Unfortunately, most antidepressants can have the same effect; decreasing our serotonin transmitters which play a massive role in arousal. You know, the same happy feelings we get when we meet a new kitten or find an unopened jar of Nutella in the cupboard.  Although often vital, drugs to ease depression can also decrease libido, hinder ability to orgasm or even interfere with sexual function.  If this is your Achilles heel, then first stop isn’t jumping off a cliff with frustration, but to see your doctor to discuss changing medication to something with fewer side effects, and/or to counteract the worst effects for you.

Negative Body Perception

With all IBD can do to our bodies, it’s not surprising that the after effects of this can spread far and wide. Often spreading to the bedroom, where its pyjamas on–lights off before even considering getting close to our beloveds.  Our stomachs are often bloated and painful, we are scarred from surgery, and our backsides are often so strained that it feels like we’ve been sitting on a cheese-grater-rollercoaster for 15 hours solid. Not the most alluring, as you can imagine. The bottom line is always, if you feel insecure and unattractive, you don’t necessarily want to take your clothes off. Try to remember that your partner probably doesn’t even notice (or care) that your tum looks like it has an entire bun factory in the oven. All of the issues you are fixated on are utter non-issues for the person who shares your bed. Intimacy and body-confidence is about more than just a physical ‘act’; it’s about sharing everything with one another. If that involves sharing your fears and insecurities, try it; I’m sure you’ll be pleasantly surprised by the response.   

Exhaustion

It’s no huge revelation that extreme fatigue is a common symptom of IBD. So when we think of bed, our first thoughts generally drift more towards snoring than sexy-times. Our bodies are sleep-deprived and almost constantly exhausted; we generally need more sleep than sex, and if we’re not sleeping enough, our libido’s shut down. The general solution to this would of course be to ensure we get enough sleep; however that’s hardly realistic in our cases, we couldd be asleep for 100 years and still wake up feeling like we’d gone 10 rounds with Rocky Balboa. Anaemia and iron deficiencies are also common in patients with IBD and they similarly cause an increase in these feelings of sluggishness. See your doctor regularly to ensure you are taking all of the right supplements and getting the iron infusions and/or B12 injections you sorely need.

Pain

Last but by no means least, pain and discomfort can be major sex-serial-killers. When you don’t feel good, your desire can take a serious hit. The last thing you want to do is consider sexual gymnastics when you can barely turn over without agonising pain. Sex should always be pleasurable, so if something is painful during intercourse that’s understandably going to cause a decrease in libido. It may initially seem mortifying, but try and talk openly with your partner about how to make things more comfortable – for both of you. Then, and only then, you’ll find yourself livin’ libido loco.

Dad: Obviously all of this comes directly from Cosmopolitan magazine and I haven’t so much as heard Sexual Healing by Marvin Gaye. Love you bye xox

Flare & Flare Alike

A couple of (perhaps slightly contradictory) things will happen to you when you live with a chronic illness. Not attempting to generalise, but based on my own personal experience, I've established a lot of patients will find they are equally cursed and blessed with both a huge increase in empathy for others, and a huge decrease in tolerance for hypochondriacs.

Neither comes as much of a shock I suppose; it makes sense that we find ourselves feeling more akin to those in health-poverty like ourselves. Or that we will have a much lower tolerance for those who give Oscar-worthy performances of illness when in truth they are fitter than Mr Motivator just back from a week’s holiday on a round the world cruise attached to a TENS machine drinking kale smoothies.

I've established over the years, I'm becoming increasingly 'Hypochondriac Intolerant'. 

It’s a genuine condition. Honestly. 

The main symptoms include; flying into a seething rage at the mention of a cold. Burning up with anger at the mention of how “ill” you are to have been to the toilet more than once in a 24hr period. But the worst, and most dangerous symptom, is the almost uncontrollable urge to scream “STOP LYING, LIAR” at these Hypochondriacs with a Tourette’s’ like regularity. It’s a hard urge to curb.

Heartbreakingly, there is no current effective treatment for Hypochondriac Intolerance. The most sufferers like myself can do, is try their utmost to avoid contact with those inflicted with Hypochondria. They spread their whiny germs quickly and effectively and diseased muther-hubbards like me are often powerless to fight back.

Of course joking aside, pain and suffering is all relative. Your tolerance for pain changes as an illness develops, you get older and your experience widens. For example as a youngster I used to be scared of needles, and thought a quick prick with a syringe was the worst experience of my young life. Then I got my first period and OHBOYOHBOY was that a shock to the system! Literally; I was wearing white pants at the time. 

But THEN I got Crohn’s Disease and I have never felt pain like it. I've felt pain since, and will again, but the agony of having an active disease eating away at your insides is something quite indescribable.

So because my pain may not be the same as your pain, who am I to tell you to shut up when you complain of a sore pinky finger? Who am I to mock you for walking with a limp because you tripped over a one pence piece? 

I’M THE HYPOCHONDRIAC INTOLERANT ANONYOMOUS SUPPORTERS GROUP that’s who and I just made that name up off the top of my head and so far I’m the only member but I’m here to tell you to keep your whining to yourself. Or else.

So tell me, do you feel sickly punk? Well do you?

Ward This Way

If you suffer from a chronic illness, it’s an unfortunate truth that you will most likely be required to spend quite a bit of time in hospital. Perhaps mostly at the time of diagnosis; IBD in particular can be very difficult to diagnose and you may find yourself an in-patient of Ward LETMEOUTOFHERE for much longer than you’d like.

So how best to cope?

As a public service I’ve taken the liberty of compiling a little list of hints and tips to help you deal with with your stay in the world’s grimmest hotel. (Please feel free to add any of your own in the comments!)

1.       Speak up – Don’t play the martyr and suffer in silence. It’s stupid and really helps no one. You may think you are being kind, and the perfect patient by not giving the nurses anything to worry about, but really you are just setting your own recovery back and making it more difficult for them to help you. Diagnosis and treatment are a two way thing – you have to play ball when it comes to doctors’ recommendations. OK, if you are totally terrified, or vehemently disagree with what they suggest then tell them! Or ask for a second opinion. Don’t be afraid to rock the boat; the ultimate aim is getting to the shore safely and with as little disruption to your life as possible. Something about getting coconuts when you get there too look I don’t know.

2.       Prepare and prepare again – You might not assume you’ll have to stay in hospital again anytime soon, but your body (and your doctors) may have other ideas. Although it’s not a nice thought to have in the back of your mind its much nicer when the time comes to know you don’t have to panic about what you will need – or worse fire orders at someone else to pack for you. I previously compiled a list of my top items for my hospital case you can peruse here at your leisure if you so wish : ( http://crohnologicalorder.blogspot.co.uk/2012/05/crohn-fishin.html )

3.      Do as you’re told – Yes you are in hospital to get well, but you are also a guest in the Bates Motel of Misery and as you are there to be looked after you must try and tolerate what is asked of you. Yes, it’s annoying when someone tries to fire dry toast down your gullet at 6.00am after a sleepless night listening to the woman in the bed opposite you screaming blue murder at all hours, and yes it’s even more annoying being shoved in a shower bleary-eyed and attached to a drip, and yes its annoying sharing a toilet with 4 other women with bowel conditions; but none of that is the fault of your nurses or doctors. It’s important you try to focus on what YOU need to do to get better. Listen and try to understand why you are there and what can be done to help. Don’t cock-block the doctor from attempting to medicate you at every turn; you never know they just might actually know what they are doing.

4.       Don’t turn away visitors because you feel embarrassed/a burden – Don’t get me wrong I’ve spent many a day in hospital when the thought of having to smile and chat to friends and family fills me with nothing but dread. But hospital can be a very lonely place, and seeing a familiar and loving face can help massively to brighten up the day. It also gives you something to look forward to and a sense of routine in what can become a calendar wasteland.

5.       Don’t feel you have to be a performing monkey – On the same topic its important you are authentic and true to yourself when loved ones arrive. Yes, its natural you don’t want to cause unnecessary worry, but here’s a newsflash for you: you are in hospital – they are already worried. Keeping how you truly feel from people who care for you is detrimental t your own mental health and is putting up a barrier stopping them from possibly helping to lighten your emotional load.

6.       Biscuits – There are always biscuits. 

Bare Naked Hades

I’m not a massive fan of pale, sickly flesh being paraded across social media. I live in the West of Scotland and see more than enough of that during our 48 hours of Summer to last me a lifetime. I don’t personally see it as a hugely positive awareness tool either. IBD is primarily an ‘invisible’ disease, so I just feel educating ourselves and others on what goes on underneath our skin is more relevant than what our external bodies look like.

The ways in which a chronic illness can ravage our bodies are tenfold, and can be ultimately embarrassing, and make patients feel ashamed. We are often left feeling as though we have to hide ourselves away, so I totally agree that it’s important to de-stigmatize our illness in any way possible. Just personally baring your bits is not for me. I generally don’t need to see more scars, wounds, cannula's or all of the medications you are taking - I HAVE ENOUGH OF MY OWN TO BE DEALING WITH.

With the greatest of respect, I don’t want to read about your stitches and staples; I don't particularly want to see your stomach or your scar. No, I'm not prudish, and no I certainly don’t believe our diseased bodies are ANYTHING to be ashamed of, but I don’t necessarily want to parade mine for all to see either. It’s MINE, and it’s covered in my own history and experiences. It has that birth mark on it I've had since I was first brought into the world, and that big scar on it that serves as a reminder of how I was saved from going out if it. I has that one long toe that I've hated since I first knew what hate meant and it has that miraculous rack that has gotten me many a free cocktail. Only a privileged few get to see these bits, including me, my partner, 2 cats and that man who cleans the gutters when I’m changing and have forgotten to shut the curtains.

Adapting to my body post-diagnosis, and subsequently post-surgery, has been a long and bumpy road and it’s only now I feel a little more confident in baring it in public. But the relief there is that I don’t actually have to. It’s private; in the same way it was before I had a scar and before my stomach would swell to the size of a small house on impact with a potato.


I don’t feel flashing my flesh will help our cause: I think talking openly and without shame will. I think helping those who are afraid to open up about their fears will. I think not shying away from the impact IBD has on our mental health will. I think learning how to conquer our anxieties will. Learning as much as I can about my disease will. Educating those ignorant of our condition will. But again, this is my choice and mines alone; if you want to bare your tum or show the world your bum then the world is your lobster. Just remember to close your curtains when you’re having your gutters cleaned. 

Stress This House

For a few weeks last year I went to see a counsellor. It was at a particularly low point in my life when nothing seemed to be going to plan. I was also struggling with my deteriorating health and trying to come to some sort of mutual arrangement with my disease that would allow us both more of an equal share of my body. (Obviously the end goal was ideally 60 – 40 in my favour but keep that under your hat I don’t want to rock the boat).

During my time with the counsellor, (let’s call her Carol, as that was her name), she quickly established that I was suffering from severe anxiety. She taught me all about the ‘fight or flight’ response; that anxiety at its core is an ‘in built’ response our bodies have to perceived threats. It allows us to do whatever we deem necessary to protect ourselves when we encounter ‘danger’. She explained that the origins of this response date back to ancient times when our ancestors lived amongst natural predators; e.g. a lion approaches looking to eat you, your fight or flight responses kick in and you either punch the lion square in its furry face (inadvisable) or bolt in the opposite direction faster than the speed of light to find a hiding place (more advisable).

Well this hypothetical tale is all well and good, but as I live in Central Scotland where not many lions tend to roam free, it didn’t quite hit home, so Carol elaborated and explained how anxiety affects the body in a more day-to-day sense.

So not many of you may know this, but I have a PHD in science and stuff I received from my studies at the Laboratoire Garnier or whatever, so allow me to share my (and Carol’s) vast knowledge with you.

Here comes the science bit.

So anxiety is like the bodies alarm that alerts you to these perceived ‘dangers’. It then sends chemical messages through your body like adrenalin, which causes your heart to beat faster and stronger, increasing your blood pressure. This in turn moves blood into the larger muscles you use to ‘fight’; many of your muscle groups tense up when this happens. Blood flow is diverted away from your skins surface causing paleness, tingling and cold feet and hands. Your breathing will also change, from shallow slow breaths from your stomach to rapid breathing higher in your chest and this can lead to dizziness and hot flushes. You’ll sweat, your pupils will dilate and your whole digestive system will shut down causing everything from a dry mouth to constipation.   

‘But, Professor Nicholls, how does all of this relate to IBD?’ I hear you cry. Well let me explain. Anxiety and IBD go hand in colon like your consultant on scope day. Ever felt yourself panic and perspire when in a strange place with unfamiliar surroundings and a sudden urge for the toilet? – ANXIETY. Ever been wheeled into the hospital and left in a ward with no explanation of what’s in store for you and your rear end? – ANXIOUS MUCH? Ever been walking to the shops to pick up your prescription when the local lion walks towards you? – ANXIETY OVERLOAD I CANNAE TAKE IT CAPTAIN ETCETC.

Most of our days as sufferers from IBD are spent thinking about our conditions, and anyone with a chronic illness will have experienced anxiety at some point in their lives. If not EVERYDAY, like myself. I am far more inclined to assume the worst case scenario Post-Crohn’s. I’m far more likely to fret about every potential situation that may occur ‘P.C’, and I’m faaaaaaaar more likely to plan every outing with military precision than I did ‘P.C’

So what can we do to combat this invisible menace thwarting our daily lives at every turn?  Here are a few tips from Carol (and myself; let’s not get ideas above our station CAROL), to help swat away the anxiety like the pest it is.

-          - Learn what triggers your anxiety - Perhaps keep a diary of what situation you were in when you felt yourself panic. Establish if there is a pattern to these episodes and allow yourself to plan these encounters better, or avoid them if possible. Is it something you can handle in a different way next time?

-          - Count to 10 slowly - Speaks for itself really. Try 20 if you are Scottish and speak at 500mph like myself. Breathe in and out on each count to slow down your breathing.

-          - Limit alcohol and caffeine - Both can trigger panic attacks and aggravate anxiety. Unless your anxiety trigger is alcohol or caffeine, then we’ll need to try something else, wont we CAROL.

-          - Accept you can’t control everything – Try to put your worries into perspective where possible, is it really as bad as you think? Don’t patronise me, CAROL.

-          - Get plenty of sleep – When it’s stressed your body needs additional rest, try to placate it where you can and get enough.

-          - Talk to someone – Tell friends and family you are feeling overwhelmed, let them know how they can help you. Talk to your doctor or a therapist for professional help. You can even call me, Carol, on 0300 20… WOAH, WOAH! BACK OFF CAROL!

Sorry about that. Carol gets ahead of herself sometimes. It makes me anxious, but I faced it head on and I feel better about that. Wait a gosh-darned minute... Reverse psychology? Carol you absolute genius!

Anyway, hope this little blog-therapy session has helped YOU understand how to beat YOUR anxiety. Hope it hasn’t made you anxious as my writing often does. Carol and I are off to drive off the edge of a cliff like Thelma and Louise; she says it’s therapeutic and not at all terrifying and deadly! She knows her stuff does Carol! 

S

Blue Monday

Ever get that feeling when you wake up and feel what I can only describe as ‘nothingy’? No enthusiasm for the day ahead, no happiness when you see the love of your life lying beside you, not a twinge of joy when you hear your two cats cuddle up to you blatantly toying with your affections for a slice of ham? No? Just me?
I wake up like this more often than I’d like. I’m working on it. I'm usually glad I wake up. I'm relieved I'm not sad, or angry, or depressed enough that I don't want to wake up. I've thankfully never felt that way. But knowing that you don't want your life to be over generally isn’t a massive confidence boost, and doesn't really make it any easier to motivate yourself for the day ahead.

Depression is a strange creature, it’s a ‘black dog’, it’s ‘a chip on your shoulder’, and it’s a motivational Facebook quote waiting to happen. But to me it’s strange, because regardless of how it’s portrayed, it's not always an overwhelming cloud of sadness hanging over you. Its ‘invisible’, like so many chronic illnesses, therefore lots of us can act ‘well’, and smile, and pretend everything is as it should be. When it generally isn’t. We often do that because it’s easier than having to explain how deeply unhappy you truly feel. That leads to several scenarios’ we don’t really have the energy or want to deal with. Here are my top 3.

1.       The sympathetic head tilt...

We all know the one. It’s both infuriating and disappointing in equal measure. It’s also expected and semi-understandable, which makes it even more exasperating when it happens. It makes people with mental illness and/or chronic illness feel ‘babied’ and that we need your sympathy and worse, pity.

2.       The patronising advice…

Please don’t tell people with chronic illness what they should be doing to fix themselves. Although you may think it’s helpful, it’s insulting and patronising in equal measure. Plus believe me, we’ve heard/tried/discounted it ALL before. See also; “cheer up” = worthy of the death penalty.

3.       The obvious boredom…

This refers to the attitude some people have when they become aware we haven’t miraculously ‘got better’ overnight. As we know, mental health issues and chronic illness doesn’t allow for a quick-fix. It requires long-term treatment and adaption, and a little understanding from those around us.

Continual health struggles (mental and physical) can feel like spending everyday wading through treacle. Simple tasks become mammoth feats of endurance and getting a handle on your emotions can be as intangible as me winning the love of Jon Hamm. It can be hard to find the joy in the things which on paper should be joy…full.  When you learn to accept your lot it becomes easier to deal with. To treat your conditions with the care and consideration they deserve, and to be a little kinder to yourself when you’re struggling.

But I suppose this post doesn't really have a nice neat ending like they usually do. That's because life with depression and chronic illness doesn't have a neat ending, or a logical conclusion. There is no ending, just adapting. And that's ok. Because that's the best we can do.