Sunday, 30 August 2015

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


Thursday, 27 August 2015

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?

Monday, 24 August 2015

I'll Be There For Two (#2)


In the interests of giving back some of the kindness that's been dabbed over me like a warm flannel over the years, this second installment of my semi-regular feature where I spread the love evenly and thickly all over the best women in my life today looks at Sam and Jen..

Jen 

Jen and I first met at high school aged around 15, where we bonded over an absolute maniac of a Cookery teacher. We were clubbed together for our Home Economics lessons and as well as vital skills for life such as operating a microwave and making Gazpacho soup, we learned a shared love of daft voices and making each other laugh (and most importantly a shared hatred of Maths).

Jen has been a constant source of inspiration for me over the years. We technically shouldn’t have worked as friends; Jen was cool and confident and I… was well neither of those things. She made me feel what I had to say was worth listening to, and that I was capable of more than just silence and nerves.  Jen didn’t realise it, and I probably didn’t either at the time, but being around her made me appreciate its ok to be who I want to be. That I don’t need to put on a persona to be liked. That I’m good enough.  

She has taught me to go for your goals and aim to achieve what you want out of life despite what is thrown at you in the process. She always made me feel like part of her lovely family. She’s a mum herself now, and again I feel nothing but love and admiration for her in all she has achieved; and from the minute she was born I was as equally besotted with her beautiful daughter.


Jen is still ‘my’ Jen from cookery class who gave me the church giggles in school mass, took 5hours to get her fringe just right before we went out as teenagers, and makes me laugh until my sides hurt. But now she is so much more, a wife, a mother and a woman who I’m incredibly lucky to call my friend. 


Sam

This wee gem and I had a rocky start to our friendship. We were mere colleagues first, and thanks to the manipulation of office fishwives, we were led to believe the other was the child of Satan. Eventually however, after being thrown together, we realised that we were both actually quite nice people, and discovered a love of singing nonsense songs and laughing at anything and everything. Now Sam is like one of my limbs; irreplaceable, frecklier than I’d ideally like, and it would hurt me physically if she was taken away from me.

Sam is hilarious and so full of giggly fun it’s utterly infectious. She is loyal and caring, and continually offers me more support on a daily basis than my best bra. Like Jen, Sam is now a Mum herself and her gorgeous daughter is already becoming a wee bundle of fun and mischief just like her Mum.


When you crack her exterior, Sam shows so much love, and so openly that you can’t help but fall for her. She is a mirror on the best side of me and I love who we are reflected in one another. She is a wonderful friend, and now even more wonderful mother and I’m constantly proud of her in everything she does. 
Also her knowledge of 90’s pop music makes me whole again. 



Sunday, 23 August 2015

It's My Party and i'll Crohn if I Want To

Today is my birthday! 
Before you start, NO I didn’t write this today; like a true Blue Peter viewer this is one I prepared earlier. I'm not a complete loser! I’ll be much too busy having orgies and snorting cocaine with rolled-up £50 notes on my ACTUAL birthday for sitting typing away at a keyboard! 

So, as it’s ‘my birthday’ it’s a time for reflection, and of course celebration that I am still walking the earth. So celebrate good times with me (C’MON) ‘cos there’s a party goin’ on right here oh what a feelin’ when we’re dancin’ on the ceiling etc etc. 

Let’s take a festive look at two of the best ‘gifts’ my disease has given me over the years:

Bravery:
People will consider those living with chronic illness to be ‘brave’. “You’re so brave getting that needle stabbed in your tummy!” “You’re so brave getting that doctors hand rammed up your colon!” -will be statements you may hear when living with IBD. These things, pleasant and exciting as they understandably are, may be essential in order to keep us well, or even alive. The ‘bravery’ doesn’t lie in us running into burning buildings to capture a kitten (which I would totally do by the way), it lies in the perception from outsiders that we are going outside of our comfort zone through choice. There is of course, always a choice; we don’t have to have our insides removed, we don’t have to take medication for the rest of our lives, but we also don’t have to help doctors keep us alive. 
Choice is a bit of an easy one to make when you are forced to weigh up painful and undignified procedures against death. 
Bravery doesn’t really come in to it as far as most of us are concerned. 
It’s not an insult to be referred to as ‘brave’ though, it’s just inaccurate. 

But in terms of ‘feeling brave’, I do! 
Most of the time. When I face things alone and get through them, when I dread a procedure then come out of it OK at the other end, when I spread open my backside for a complete stranger and let him fiddle about inside. I also do that sometimes for doctors. 
That’s bravery.

Empathy:
In the age P.C. (Pre-Crohns), I’d say I was a considerate and patient person, understanding and kind and willing to help others. However, since I’ve become ill myself I’ve truly begun to understand what empathy means. 
It physically hurts me when my friends and family are unwell. It’s an inbuilt need to solve their problems and make it all better. Maybe this stems from a subconscious wish my loved ones could do the same for me, regardless, it’s a feeling of deep sadness at times when things go wrong for the people I love. Even people I don’t love, and don’t even know; when I’m lying a hospital bed and there are sick people all around me, my empathy buzzer dings more loudly that an Avon lady at the door chomping at the bit to sell you bubble bath. It’s a nice quality, a Mother Theresa-like urge to heal the world and make it a better place, even if that can only involve being nice to your fellow in-patient.

So in conclusion it's not all bad having a chronic illness. Well OK it's mostly bad, but there's always some good that can be gleaned from any bad situation. And as it's my birthday, I'll choose to take the good today. 


Friday, 21 August 2015

I'll Be There for Two

Living with chronic illness can often be incredibly isolating. 
That's why its of the utmost importance to be open and honest with the people you love in order to maintain a continued support network. I am incredibly lucky in that I have a wonderfully supportive family and friends who have been by my side at every turn. So, in a semi-regular new feature on my blog, i'd like to pay tribute to a few of the best women in my life. 
Let's begin! 


Nichola


I first met this hot piece when she was around 14 years old. That sounds much more sinister that it really should – let me clarify that I am not a sex-offender - I was her colleague, then her boss then her friend. (The best job of all was (is) the latter).

Our friendship grew during long shifts spent together working long hours for little money, but mainly our shared disdain for the human race. I am a little older than Nichola. So our first friendship was more like big sister little sister. Although she has lots of them already mind you so maybe I was more like an unofficially-adopted one. I talked to her when her wee heart hurt and when she was experiencing all the drama that goes along with growing up. I watched her blossom into a beautiful and intelligent woman and felt a strange pride that I was lucky enough to be around for it.

Our friendship is fairly similar now in that I still feel big-sisterly towards her, but she is my equal in every way. (Except age of course – I’m still a pensioner and she is still a spring chicken). We share anything and everything (except men as we don’t really have the same taste there...). We talk openly and honestly and she makes me laugh until I require a Tena-Lady.

Although she has been in poor health herself for a long time, earlier this year she ran a half marathon to raise money for people like myself with Crohn’s Disease. She is amazing, inspiring and so full of life it makes me beam just thinking about her. She is hilarious and extraordinarily talented in so many ways, but most of all utterly unaware of how wonderful she is. She is a bright light in my life and for that reason and a million more I cherish her.


Deanna 

It can be scary when your boyfriend’s best-friend gets a girlfriend. What if I don’t like her? We’ll have to spend loads of time together? What if she doesn’t like me? Thankfully I do like my boyfriend’s best-friend’s girlfriend (now fiancĂ©e). I like her a lot.

She lives with a man who is a carbon copy of mine in many, MANY ways, therefore we always had something in common from the beginning. She is fun-loving and hilarious, beautiful and intelligent and I am very happy to have met her (and even happier Steph brought her into our lives).

Because God/life /whatever created us, is a cruel bastard, it gave lovely Deanna cancer. It made her have to quite literally fight for her life, and she is still fighting. She is all the things ‘sick people’ actually grow tired of hearing: inspirational, brave and motivational. She probably doesn’t feel it a lot of the time; too busy being in pain or feeling like the Grim Reaper is chilling in bed with her, but all she does and all she says prove otherwise. It IS brave to share your story with the world like she is. It IS inspiring to watch her overcome obstacles that her body keeps putting in her way. And it IS motivating to see her look to the future with courage and hope when most of the time enthusiasm is a hard device to muster.

It’s very odd when someone you care for gets ill. When my brother got Cancer I felt for a while it was a snippet I’d heard of a story-line from a shit film – it’s an out of body experience hearing it happen to someone you love , it takes a while to sink in. So I can’t even begin to imagine how it feels to be the owner of the body it’s happening to. Somehow words become meaningless, flowers and chocolates seem useless tokens and you feel utterly helpless. You feel guilty for feeling helpless, then guiltier still for thinking about yourself if even for a split second.

But Deanna has never made James or I feel this way. She has made us feel included and allowed people to attempt to support her, if even from a distance. She has been private and respectful of herself and her condition, laughed when she is able and has spoken out in the most breath-taking ways about the heartbreak her illness is still capable of inflicting on her and her loved ones.

I didn’t really want this post to be all about Cancer but sometimes life is like that. I wanted to tell you that Deanna is one of the finest women on god’s earth and I’m thankful she is in our lives – I hope she keeps fighting because she has a bright and brilliant future to look forward to, and there is much more Nutella to be consumed than I can possibly manage on my own. Believe me I’ve tried.  







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. 


Tuesday, 18 August 2015

Glazed & Confused

An occupational hazard in living with chronic illness, is the ‘glaze over’. This involves you (as the sick person), mentioning your illness to a (non-sick) friend/family member/cat, and watching as their eyes glaze-over with pre-emptive boredom, followed by a crushing stare of ‘here we go again’ written all over their face. In my mind this happens in slow-mo and everything goes quiet and blurry and a single crow flies overhead.

 

This GlazeOver™ is probably entirely unintentional and out with their control; much like my own faces’ default distain setting, it’s probably a knee-jerk reaction to hearing you mention your condition. Not a nice expression to be on the receiving end of, I grant you, but it happens, and fairly regularly.

 

When you are met by this face, the result can be quite internally catastrophic for the recipient. Suddenly you don’t want to talk. Suddenly you feel embarrassed and ashamed. You feel like the World’s Most Boring Conversationalist 2015. You feel confused that you are now left feeling this way. Even more so when the one who’s visage has left you reeling, actually instigated the conversation in the first place.

 

Of course I’m no innocent; we are all guilty of The GlazeOver from time to time. Don’t try to deny it, you know what I mean. When that colleague starts telling you about the latest documentary he’s watched, or that drunk man at the bar tries to tell you a horrendously sexist joke about mother-in-laws.

 

The GlazeOver™ is prime for health discussions – because let’s face it, not many people actually enjoy hearing about other people’s health woes. It IS boring sometimes, and I often get bored to death even talking about it.  So I can’t really blame those of you who glaze over, and I don’t. It’s just something that needs a little work from all of us, and a request to bear in mind that sometimes it can stunt us in opening up about our fears and anxieties.

 

Listening and learning are vital in educating yourself about anything – so if we want to share with you then the very least you can do is tolerate it for a little while – it’s really not all that dull believe me. (You’ve read this far so you haven’t quite glazed yet!) But do feel free to speak up when we are overstepping the mark – when we would yap on about our woes so much we would make Mother Theresa loose the rag - please kindly tell us to cease immediately. It might sting at first but we’ll see it’s coming from a place of care and potentially an attempt to salvage your mental health/hair being pulled out at the roots. 

 

So when the moment arises and you feel the Glaze Effect sweep over you like an icy breeze, try and remember to 'Turn that Glaze into Praise'! No? Or, 'Don’t get Glazey Act like Swayze!' Yeah that’s terrible I know, ehh, 'Treat that Graze as Just a Phase!' 

Look I didn’t say I was good at snappy catchphrases’ alright, I clearly struggle with that side of it and I didn’t say I was any good at…. Oh you’ve glazed over. Right. Well played.

 


Monday, 17 August 2015

Great Rant

'I’d gladly give over my vagina to medical science/someone less fortunate if I could stop these women talking about make-up for one solitary minute' - is a thought I had the other day. 

The reason for this to pop into my head was due to being trapped in a conversational situation whereby I had to listen to my fellow (wo)men rabbiting on about lipstick and all his pals for a good 2 hours solid. TWO HOURS. It was torture. It was like water-boarding but with make-up. Make-up-boarding. Make-up BORED-ing. 

Now don’t get me wrong, I like make-up as much as the next woman, in fact I very much enjoy the ritual of painting my face before a night out – looking glamorous and having a slight out of body (face?) experience when I look in the mirror. I like feeling ‘pretty’ and alluring and all that jazz – but I also have MORE IMPORTANT THINGS TO WORRY ABOUT.

It could have been anything really, that tipped me over the edge. Make-up patter was just this particular trigger for me, on this particular day. It could be talking about bus timetables, and how horrendous it is that the number 27 is late AGAIN, or talking about the weather and how unfeasible it is that it’s raining in Scotland, in Summer, AGAIN. 

It’s a rule of thumb that making mountains out of molehills suddenly becomes a bug-bear of many people with chronic illness. You suddenly find yourself annoyed at people’s ability to create drama where there is none. You become furious at those around you taking their lives for granted and weeping and wailing because their favourite shade of lipstick is no longer in stock.

It’s not their fault. 
It’s not our fault either. 

But it’s hard to find a balance between building explosive rage and grinning and bearing it. 
Do we tell them we’d happily ram a chloroformed rag in their mouth every time they complain about having to wait for more than 5 minutes in a Post Office queue? 
Or do we tolerate their gripes and treat them with the same respect and tolerance as you’d expect them to allow yours? 

Maybe you don’t know what I mean. Maybe you are ill too, yet you live on a fluffy cloud of tolerance and eat sunshine and lollipops for breakfast and expel odourless pink gas, well BULLY FOR YOU. You are a Mary Poppins android anti-human and I don’t understand you. In fact I am jealous of you. Maybe I am just the intolerant one, who gets annoyed at people treating me as though I am a sponge ready to mop up their problems and ring them out? I AM willing to do that by the way, because I am a nice person who cares about people. But I just would LOVE if you could choose your battles a little more carefully. Do you really need to burst a blood vessel stressing about which type of rice would go best with your curry? I nearly DIED and I didn’t make a fuss like that.

I suppose without being too dramatic about it, having an illness which takes up so much of your life can alter your view on things. Suddenly minor niggles become just that, and not something to lose control of your facilities about. Suddenly waiting for a bus for 5minutes longer than expected isn’t actually that big a deal. Having parts of your anatomy removed is. It’s all about priorities; and unlike my disease, I like to think mine are in check. Are yours? 


Saturday, 15 August 2015

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. 


Tuesday, 11 August 2015

The Struggle is Real

Sickness and all that goes with it, has become such an all consuming part of my life, that I often find I can't remember what it was like to be 'healthy'. 


I suppose I never really was; I always felt a sinister undercurrent that something wasn’t quite right and/or, that I was internally acting like an raging hypochondriac. I felt terrible most of the time, but that was my 'norm'.

 

So when you spend a large chunk of every day thinking, feeling and being BORED by chronic illness, it makes it all the more infuriating when people around you seemingly milk the udders of illness for their own milky gain. (Yeah I'm not sure where I was going with that analogy either, I just really like cows). They do this, either through implying they have conditions they do not, or making unwell mountains out of ACTUALLY FINE molehills.

 

Those people who don't take advantage of how lucky they are to be well are one of my pet peeves. Those who force themselves to be sick; mainly through Oscar-worthy performances of 'visible' symptoms. The sniffing, the sighing, the grasping of head, the hot water bottle on the tummy, mummifying themselves with gauze, the list (like their symptoms) is seemingly endless. They apply gargantuan issues to minor ailments.


I've got a cold= flu.

I've got a sore head= brain tumour.

Sore foot= gangrene. AMPUTATE IMMEDIATELY.

 

Now of course I'm not in any way advocating that anyone should ignore unusual symptoms; quite the opposite! If you are GENUINELY concerned and fear something sinister is going on within the realms of your carcass, then please, PLEASE visit your doctor. 

But if you have a cold, and you KNOW it's just a cold; please, PLEASE GET A GRIP.


The state of constant bubbling rage I find myself in when people around me take their health for granted is quite powerful and I often fear spontaneous bile combustion.  

 

I can be as empathetic as they come, but you must understand that expecting someone who's own internal organs are slowly trying to kill her to mop your fevered brow is a wee bit of a kick in the teeth.


What I'm trying to say in my usual clumsy and distainful way, is that its important we focus on the good in our health not the bad. If that means you are someone who is well 99% of the time, then please relish that! I'm more envious than you can know. Seriously, I can't tell you, it would make me look like a  jealous ex and I've already got restraining orders in place from Jon Hamm.


If you are unwell 99% of the time, then relish that 1% and clasp it to your bosom like a freshly laundered kitten. Use the time you are well to recharge your batteries, and to try to ensure that you enjoy a higher percentage of good times in the future. Don’t wallow on the negatives as that in itself is merely adding to the ever increasing pile of negativity that comes with chronic illness.  

 

Let's agree that if you have a cold, its just a cold. And I'll agree not to murder you all in your sleep. A pretty fair deal all round I reckon.



Saturday, 8 August 2015

Mum's The Burd

Today’s post is a slight deviation from the general disease-related fun regular readers may have become accustomed to. Instead of bowels, and stool and pain, I’d like to take a moment to wax lyrical on another massive pain in my life; my Mother. (I'M JUST JESTING OF COURSE).
My lovely Mum turns an incredible 70 years old this week, and although she may well end my life for broadcasting this fact to the world, it’s a risk I'm willing to take in order to express my deep adoration for the woman who gave me life. (Also if she does kill me, this blog will serve as vital evidence so be sure to pass it on to the police in the event of my untimely demise, thanks).
But I digress. My Mum is beautiful, vibrant and human. She has taught me how to love and be loved, how to laugh and cry and how to show kindness and empathy for those around me. She has taught me true patience, mainly because she often has none; teaching me the time and how to ride a bike, resulted in many a tantrum and storming off in a huff (for her).  She is hilarious and self-deprecating and that’s just as well as her Victoria Sponges are renowned for being flatter than an ironing board. She is forgiving, which again is just as well as I've already told 3 jokes worthy of being grounded and having my pocket money stopped for at least a month. She is tolerant and understanding, and makes me feel special and a benefit to the world.  She allowed me to be myself and is always supportive of my decisions (even when I painted my teenage bedroom fuchsia pink and lime green) .
Before I was diagnosed with Crohn’s Disease it was a trying time for all of us. Not least for my lovely Mum, who struggled watching me be shipped in and out of hospital, poked and prodded and wither away in front of her eyes with no answers forthcoming. It was frustrating for all of us, waiting to find out why I was dying, and I don’t doubt heart-breaking for a mother to watch her daughter suffer and be utterly helpless to do anything about it. I'm not the only of my siblings with a life altering condition, and this is a further cause of worry for my Mum. She feels sad for us and at a loss to solve it. Mums are meant to fix things and kiss you better – some things are beyond kissing better. Besides I like her too much to expect her to kiss my colon better. Several doctors have tried and failed.  

Anyway, as it’s rapidly approaching her special day I wanted to tell her how… special she is to me, and that she’s always in my thoughts. I worry for her just as she worries for me – she won’t stop no matter how much I nag her and neither will I. DEAL WITH IT HEN. I will continue to aspire to make her proud and talk to her about my life as both her friend and her daughter. I will celebrate her life today and every day, and feel toasty-warm inside knowing she is a part of my life. 

Monday, 3 August 2015

Second Crohn's Citizen

I used to be (and still am to a certain extent), the type of woman who spends [wastes?], a great deal of her time getting wrapped up in the actions of other people around me. I’d worry what they think of me; if they like me, if they think I’m funny, or intelligent, what that certain look or sentence actually means regardless of what they say. This has caused me no end of hassle and confusion at times, mainly in relationships. So you can imagine the additional strain on someone who performs this sort of behaviour, when they have an incurable (and not particularly well known), illness thrown into the mix.

For a good while after my diagnosis I found myself slowly shaking off the shackles of caring too much what other people thought of me. It suddenly no longer seemed of any importance. I was dying, and unless these random strangers were for some reason going to be asked to give a eulogy at my funeral, their opinions had become invalid. I cared about getting well, and I worried instead about my family and friends being sad and confused. I wanted to learn about my illness and help myself and the people I love to understand it.

As I adapted to life with Crohn’s Disease, I claimed back the confidence that had previously been taken by my badly behaved bowels. I learned to get over myself and stop worrying about how people would view my supposedly unsightly scar, I stopped fretting about people misunderstanding my condition and I became confident in my ability to communicate how I felt – through writing and elsewhere.

But more recently, as my mental health has struggled alongside my physical, I’ve found myself slipping back into those feelings that I am on the outside looking in. That I am a second class citizen. It’s a strange feeling, and hard to explain, but I suppose you could say I feel that I am somehow less of a whole person due to my illness. I know that isn’t true. And I would beat another patient who said the same to within in an inch of their lives (with cuddles and soft pillows), but it’s a feeling I’ve felt start to drift back in during the last few weeks. I feel those same feelings of struggling to express myself and am at a loss to convey the complexities of my illness in a few mere sentences. Is that even possible? I doubt it.

The other day someone asked why I was unwell, quite aggressively, not a kind, “are you ok?” but more of a “what’s wrong with you?!” – this was after a day of having tried my absolute utmost to conceal the fact that I felt as though the Grim Reaper was grabbing at my coattails. Which is made even creepier by the fact that I wasn’t even wearing a coat. I felt ashamed and embarrassed to have been ‘outed’ like this; I had to explain an unexplainable illness in under 30 seconds to avoid the social horror of backtracking and pretending I’m fine. The heat was on. Not least on my forehead as my temp was through the roof by this point.
Anyway, I said “I’ve actually got Crohn’s Disease...” but before I could even delve into my brief synopsis of my irritated intestines, I was met with THE LOOK. The Look is difficult to describe, but one professional sick-people have seen many times in their lives. It starts with the glazed eyes of someone who has already decided they are heading straight down BOREDOM FALLS without a raft or life-jacket. It then moves to the vaguely sympathetic head nod, usually at the wrong places, which conveys to the recipient that you-aren’t-listening-to-a-single-word-I’m-saying-you-are-singing-Maroon 5’s-latest-single-in-your-head-right-now. It ends with silence. Painful, uncomfortable, excruciating, Best Man at wedding makes a rude joke that doesn’t land; SILENCE. There’s no way back. You’ve begun on this road and now you have to navigate over the speed bumps.

So what do I do? I try to appease the poor unfortunate soul who is at a loss for words about my disease by reassuring them ‘it’s actually fine, and no big deal, and let’s change the subject shall we? Did you see the game last night, my favourite bit was when the man kicked to the other man then his foot kicked it in the big net’.


But I should confirm that it IS a big deal. It IS a horrible and uncomfortable disease, but all I require from you, as an inquisitive wee soul, is not to assume I am ‘faking it’, or making a diseased mountain out of a diseased molehill. To listen for 30 seconds and maybe learn why it’s a difficult thing for me to talk about. If you struggle to hear it, think about how it feels to feel it. THEN and only then, can we talk about the game where the men kicking their balls into other men’s nets.