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

 

Book Up A Storm

I've neglected the blog a wee bit lately. Sorry about that. But with good reason! 

I’ve been so busy with book promotion, (how weird is THAT sentence?!), my real life full time job and stuff at home in my personal life that I feel like I've barely stopped to catch my breath let alone pen a blog post.

So here's what's happening. My first (and hopefully not last) book on living with Crohn’s Disease ‘Go Your Crohn Way’ came out 5^th May!  

Since my first book was published it's been an incredibly exciting time in my life, a genuine whirlwind and I've cried a LOT of happy tears. 

The outpouring of love I have received since the book was published has been overwhelming and completely unexpected!  Not that I think my friends and family are monsters who wouldn’t support me; but because I have been totally single-minded in focusing on doing the work (of which there is a LOT) to get it out into the world. I hadn’t stopped to think that other people would particularly care, or be in any way affected by something I had written. But at the end of the day I WANT people to be affected by the book: isn’t that the whole point? To raise awareness of an unspoken condition, to help give an understanding of life with chronic illness, and to help those suffering feel they are not alone and capable of living an AMAZING life? YESSSSSSS.                  

I had no idea having a book published would all be such an emotional experience! It’s not just my friends and family who have showered me with praise and encouragement, its people I’ve ‘met’ online, on Twitter and Facebook and through my blog. People I know well and people I don’t. How wonderful is that?

I suppose the subject matter of the book and the fact that it’s so personal has emphasised how people who love me are reacting to it. It feels to me a very cathartic experience; I’ve also found myself in a privileged position of putting something out into the world that may help people feel less afraid, isolated and alone. I wrote this book because it’s something I would have loved when I was diagnosed. I wanted to know that I’d have a life beyond my illness – something I didn’t think possible when i was being pummelled into insignificance with descriptions of my unsightly bowel and medical terms I didn’t understand.

I cannot describe how exciting it is seeing you all with your copies of MY book. When my partner saw his name on the inside cover (it’s dedicated to him, my parents and wet wipes) it was so incredible I wished that I could see his face could stay that way forever.  It’s all such a surreal experience and one I never thought would actually come to fruition. Every day is a treat and I don’t care that the hype will inevitably die down because my book will be in people bathrooms for years to come and I LOVE that fact.

I truly hope you enjoy it. And if all else fails, it’ll make the most luxurious toilet paper. 

Crack To Life

I don't have a single clue what I'm doing.

That's OK.

I don't have to.

I’m 32, and I don’t have a single clue what I’m doing!

Don’t worry [MUM], that doesn't mean I don't have ambitions, and goals in my future that I want to achieve, because I really do. I just don't have it all worked out just yet.

Not quite. Does anyone? I’m not sure.

If Facebook posts and stop-and-chats with old school friends are anything to go by, most people seem to have life all figured out. It’s all going swimmingly. I just don’t buy it.

For some people I’m sure life IS sweet. They are in the job they want, have a happy relationship, and maybe some perfect kids/cats. That’s great and I’m very happy for you.  

The truth is, for young women (and I’m sure men: I just don’t have that same experience to share), there is a tremendous amount of pressure on us to have ‘it’ all worked out pretty early. Despite being endlessly told not to grow up too fast, not rush into anything and enjoy our youth because it's the 'best time of our lives'; everything else tells us the exact opposite.

Decide what you want to do with the rest of your life before you leave school.

You're 16 you should know what career you want by now, come on!

Get a further education.

Get that job.

Get married, have those 2.4 children.

Get a mortgage.

Get a pension.

Write your will.

Die.

WOAHHHHH there. Can we just take a minute to ENJOY life? And see where it takes us? When I approached turning 30 I did so with not so much trepidation, more like abject terror. I focused solely on what I hadn't achieved. The rules of relationships and expectations put on me by every book, film, magazine article around me. I hadn't found my dream job, my perfect home, I wasn't married and I didn't have children. What had I achieved then?

That’s right: Nothing.

So instead of wallowing on my apparent failures I decided to forget about it and have a big party where we all dressed up as 80’s icons instead. (That was definitely one of my better and more glitter-inducing ideas).

I got sick though. Not that night. Although I did mix my drinks and eat faaaaar too many potato wedges. I became ill in my mid-twenties. It suddenly didn’t matter what job I had, or what colour of paint I’d buy for the lounge; it mattered that I stay alive long enough to wallow in the joy of choosing paint colours.

Illness, no matter how seemingly insignificant to those on the outside, can be genuinely life-changing. It can be all but impossible to simply fall back into old routines or old ways of thinking, because for you everything has changed. That can be very hard for those around you to understand, let alone accept.

That’s OK too! Don’t push them to, and more importantly don’t push yourself. You are doing the best you can so just keep at it. Much like our defunct bowels things will work themselves out eventually. Just be patient. A patient, patient if you will.

After all, your [insert current decade of age here] are the best time of your life. 

Crack to the Future

In the early days of my illness, (and BOY OH BOY does that seem like a lifetime ago now); the future wasn’t something I really considered.

If, and when I ever did, it was almost always with negativity and a justly hopeless outlook. I’d focus solely on what I wouldn’t be able to do, what I would be forced to miss out on, and how awful living with the ‘new’ me would be for my loved ones and I. I couldn’t think beyond pain and medication. I couldn’t and wouldn’t see anything past whatever horrible procedures and anal intrusions I’d have to face on an almost daily basis. And that was just my private life! HAHAHAHA! LOL! BOOM! ETC :'( 

I was blinded by nausea, pain and misery. I couldn’t even begin to imagine how I’d be able to piece my life back together with this newly diseased stranger along for the ride. I felt as though I’d changed beyond all recognition and was frustrated that everyone around me couldn’t see that I was suddenly a different person.

I felt ‘altered’.

I was grumpy, irritable and I’m pretty sure a Grade A pain in the neck to be around. Forcing myself to pretend otherwise just led to more of an inner rage that seemed to burn away inside worse than my intestines after chili sauce.

That was over 6 years ago now, when I had decidedly more diseased insides, and definitely less internal organs. Since my diagnosis I’ve honestly lost count of the amount of times men I’ve only just met have inserted intrusive instruments inside me. A phrase I never expected to say unless I’d made the inevitable move from art school into sex-work. It’s on my CV now.

I’ve learnt more about the inner workings of my body than I’d likely ever have known otherwise. I’ve realised my capacity for empathy towards others is huge and my tolerance for hypochondria is MINISCULE. I’ve also appreciated that time genuinely IS a great healer. It allows for grieving, adapting and eventual moving on. Time passes and what was once the most horrendous thing ever to happen to you becomes one you can live with. You become less self-absorbed and realise that having a disease isn’t the most important thing in the world. Let’s face it now Jon Hamm is single that trumps everything.

For those of you who find yourselves in the position of having been recently diagnosed, please remember that although it may feel like it, your life isn’t over. It’s just been altered a little. OK, a lot.

It’s tough and it’s going to be really hard to maintain some semblance of a positive attitude. But do bear in mind that to date there is nothing in your life you haven’t overcome. You will deal with this too. You will.

LIKE A BOSS. Albeit one with shares in wet wipes and a grumbly tummy in board meetings. 

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.

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?

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. 

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.