Stretch

When thinking about words, we always tend to associate them with something. Be it an action, a saying, a memory – words have the power to create feelings, insight fear, generate laughter, convey a lot or a little.

Stretch is a word I have never thought much about and if I did it was fairly generic.

Statements like;

“You’re stretching the friendship”
“You should stretch after your workouts”
“Can I make this $12.56 stretch the 3 weeks until payday”

My feelings towards the word stretch were non-existent, well they were, until last Friday.

In fairness it wasn’t ‘stretches’ fault. He wasn’t on his own. You see, stretch was paired with some friends to create a statement. Six simple words. Said together.

We had to stretch your intestine

Thankfully when these words were uttered to me, I was high as a fucking kite and did the whole ‘oh okay’. However, once the drugs wore off and the weight of that statement settle in my brain all I could think was ‘stretch’.

Now, let me tell you, when I woke up everyday before last Friday I didn’t even consider what it would be like to have ones organs ‘stretched’. I know, crazy right? It had never entered my mind. Why the fuck would it?!?!

After almost 3 days of special dieting, 48 hours of limited and then no food, 6 hours without a sip of water and numerous trips to the bathroom – I was finally ready to take a trip to dream land, so my rectum could once again be breached in the name of science.

The cannula was placed in my hand and the doctor stated the medication they would use to put me to sleep would hurt, but it would be over soon. 30 seconds later my hand was hurting like nothing I had felt before at which time they announced ‘the cannula exploded’ and they would have to insert another one in the other hand.

I chuckled and because I was well on my way to nod-town I asked ‘did my hand explode’ right before I passed out to the sounds of laughter.

I woke, what felt like seconds later, to my beautiful nurse asking how I felt. ‘Fine’ I responded on instinct, given I peddle this lie all day long it was second nature to answer before considering the statement. Taking stock of my body, I realised, I feel weird. More importantly, Fred feels weird.

Dr comes in, I am told ‘your on free fluids’, I tell him he is a mean horrible man , he laughs and then tells me he will be back soon to tell me more. Right before I drift off again, fighting the meds, I think ‘more?’ what more could there be.

Round two. No longer tripped out to my eyeballs I start to feel a twinge of something. The memories rush back and I realise that I am on ‘free fluids’. No food.

You evil mother fucker!

You get to probe my arse, I get a chicken sandwich!

We have a deal God damn it!!

As the anger dissipates I come to one conclusion – something bad or not ideal has to have either been found or happened to hinder my ability to eat food.

Food irritates bowel > bowel gets upset > Amanda ends up in pain > Amanda gets upset.

Now situated in the ‘waiting area’ I look at the pictures provided and quickly realise what is going on – I have no fucking idea what I am looking at!

What I do know – I can’t eat food and I have a script for Endone which means Dr. B is expecting me to be in pain. I read the report attached to the pictures and at the word ‘dilatation’ I realise the very distant possibility of needing to open a potentially closed intestine had become my reality.

Waiting (as impatiently as possible) Dr B. arrives to deliver the news to Hubby and I.

My intestine was closed over with the opening only measuring 1mm, he continues explaining they inserted a balloon into the opening and STRETCHED my intestine to 10mm (1cm).

It doesn’t end there.

For this to work, they need to keep STRETCHING my internal a-nus and I need to do this over a series of colonoscopies. Over the next 4 weeks.

Oh and the icing on my shit cake – it could recede and close over and if they stretch it too quickly or too much, it could ‘perforate’ and I could still end up under the knife to have it removed.

MERRY-FUCKING-CHRISTMAS-TO-ME!

Never. ever. not.even.once did I sit and ponder what it would be like to have my internal a-nus STRETCHED! Thank god I can now tick it off my bucket list and let me tell you something else, despite all the thoughts you may have had about having your internal organs stretched, you can just put your concerns and questions to bed, because I have the answers for you;

Yes, it is as crap as you would imagine.
Yes, it hurts like a fucking bitch.
Yes, it is one of the weirdest feelings you will ever have.
And, yes, you 1000% do not want to have your intestine stretched!!

I am all for having a great story to tell, but this, this is taking shit to a new level. You can’t make this up. Literally my future for the next 4 weeks hinges on the ‘stretch’ – how much it can be stretched, how well the stretch works and if I need more than another 2 stretch sessions.

Without the stretch I will continue to be in immense pain and although I am not pain free at the moment, this is being called the next step in my process. Yes, I said ‘progress’.

And again, I am faced with the same situation I spoke of in my last blog – my right to choose is non-existent. I have no choice but to take this course of action and hope for the best. I have no choice but to cancel my plan in 3 Saturday’s time – instead of waking up with an awesome post-Christmas-party hangover, I am waking up to head into hospital. I have no choice but to make the best out of this situation.

SO what am I going to do?

Well, I am going to buy Dr. B a Stretch Armstrong figurine which I will present to him on our final stretch session to mark this momentous occasion. If we are going to stretch together we are doing with humor!

 

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Dignity

The state or quality of being worthy of honour or respect.

I have never given much thought to dignity, or it’s meaning for that matter. I guess that is because I have never really been in a position where I feel like my dignity has been questioned. I pondered this thought on the way home yesterday. In between bouts of mental anguish.

I can’t believe what I am being asked to do.
This one takes the cake.
No, no – I am okay, I can do this.
God, where is the fucking dignity in this.

And that is when it hit me. My dignity when it comes to Crohn’s is non-existent.

There is nothing dignified about this disease. My quality of life is not being respected. My body is not being honoured and my mental health is being tested on the daily. So what brought me to my knees this time? Two simple words…

Stool sample.

A new all-time low. Is it not enough that I am facing the preparation for my 4th colonoscopy in a year. Is it not enough that I am approaching the one year anniversary of the flare that brought me to my knees and threw me onto this path I now travel. Is it not enough that my body and soul have been subjected to endless tests and probing (not the good kind).

Put simply. No.

Everytime I think ‘okay, I have this’ something else is thrown into the mix and I land on my arse again. Mentally, I don’t have this. I don’t want to do a stool sample – I may write a blog with the word poo in it, but I don’t want to deal with my own damn poo. Who does?

I didn’t expect this to throw me off my axis so much, but come on! This takes the cake. In the space of two weeks I will have handled my own shit and then be sent to dream land for 20 minutes so I can have my arse plundered in the name of medically required exploration. You’re taking the piss right?

I can handle the pain – walk in the park. I can handle the ebb and flow of being constipated one minute and sprinting to the loo the next – walk in the park. I can handle the guilt and sadness I face when I have to bail out of events because my Crohn’s has beat me down – walk in the park. What I can’t handle is handling my poo. NOT WALKING IN ANY DAMN PARK.

I don’t want to (I am whining when I say this). I want to stomp my feet and scream no. I want to keep what little dignity I have left intact. And I don’t think there is a dignified way to handled one’s own brown log.

In fact, I love hitting the silver button and watching that sucker get flushed away every damn time. I get a sick satisfaction in saying ‘see you’ to the one thing that causes me so many issues. If I’m not experiencing some level of pain from the food that goes in my body, it’s from the food working through my body or the food trying the escape my body. So when it happens, I give it a good old army salute into a middle finger F U.

And now I am being asked to fish the sucker out and keep it? No.nope.not going to happen. And why in this day and age has the medical profession not come up with a better way to find out what is going on than analysing poo? Honestly. There has to be a better way.

Now when I started to write this post I hadn’t really discussed what I was being asked to do with anyone – but after a few coffee catch ups and phone calls with some of my nearest and dearest, I discovered that a lot didn’t even bat an eyelash at this request. I was shocked.

My sister told me that she was about to fish a poo out of the bath that my darling niece had left behind. My girlfriend advised me she regularly sifts through her dog’s poo to reclaim the numerous baubles that he ate and shouldn’t have and a couple professed that they have done the poo collection for medical research a number of times.

This forced me to pause and consider my reaction to this request. How can these people be so blaze about this heinous task? I feel like my dignity is being stripped away and they are all shrugging and being like ‘whatevs’.

Then I realised – my whole mindset towards my digestive system and anything to do with it, is not great. I have become super sensitive to all things poo and poo related. I can’t help but feel like everything related to my digestive system is now a sensitive topic.

If I had been asked to deliver a poo to the doctor before this I probably would have been a bit ‘icked’ out by it, but I would have gotten on with the task and moved on fairly quickly. Just a step towards whatever the end goal was. But because this is another step in a very long and emotionally draining ‘personal’ project, I am a total girl about it.

This is personal to me. It falls into the ‘unfair’ basket. This on its own would be fine, but this coupled with the colonoscopies, needles, injections, numerous doctor’s visits, pain management, food I can’t eat, laxatives I have to take, sore butt I often get, pain, pain oh and did I mention pain? it’s like another nail in my Crohn’s coffin.

My girlfriend has advised me to be kind to the poo sample. She wants me to address the poo when it’s in it’s bag and tell it that I am sending it off to the lab to be smeared and poked and prodded so it can give me the answers I need so I can give my body want it needs to get better. Granted when she said this I thought ‘someone’s clearly been afternoon drinking again’, but after some thought I think she is right.

I need to remove the emotion I attach to the task. This is nothing to do with having my dignity stripped, this is simply about getting some answers that may help get me closer to a positive result.

There is very little dignity when it comes to having a chronic illness, but there is a fuck load of dignity in doing what you have to, in a great positive respectful way to get a good outcome. And that, well that is something I can totally do.

*adjusts crown and gets the fuck on with it*

Oh Baby!

Every woman out there knows, the topic of babies is one that has plagued us for generations. People tend to be stupid and totally mindless at times, particularly when it comes to the matter of babies.

It seems that if a woman has reached a certain age, if she has a ring on her finger, if she has kids or if she has a stomach be it large or small the thought of babies is at the forefront of people minds.

Whether it is asking when your planning on having kids, having the next kid or the worst yet when your due, people (most, not all) feel the need to cross the unspoken boundary of motherhood and probe women on the plans for their uterus.

I have, on some level, always had the type of figure that no matter how thin I am, my stomach sticks out. I have a tiny waist, but to me it just makes my protruding stomach that much bigger. Now I have the delightful pleasure of having Crohn’s and at any given moment I can go from flat-ish tummy to ‘when’s the baby due’.

And it pisses me off. I will tell you why!

We aren’t ALLOWED to even entertain the thought of having children at this stage. Yep, my very friendly doctor has firmly stated that kids are a no-go until they deem me in good enough health to slip one past the goalie and bring a hellion into the world.

Any woman that has faced challenges when it comes to motherhood will attest, there is nothing worse than being asked about it.

Now prior to being told that our ‘family planning’ would be on hold – the kid matter was not one that bothered me that much. We know we would like them, we know we will have them and we knew it wouldn’t be until after we were married. The rest was unplanned, undecided and not something that was given much thought.

But those simple words of ‘no you can’t’ turned me into a rebellious child. I chucked a mental tanti and gave the world a solid middle finger while quickly professing ‘the hell I can’t, nobody tells me what I can and can’t do’. I will do what the hell I want.

Okay, not really. But holy-hotdogs I was mad.

So naturally, everything after that was baby central. Friends announcing they were having babies, Facebook announcing acquaintance are having or have had babies, people getting cute kittens and puppies and then, by far the worst, people asking me when we are going to start a family and worse still, whilst mid flare, when my baby is due?

I AM NOT PREGNANT, MY GUT HATES ME AND IT’S HUGE – BUT THANKS. FUCKTARD.

That’s not even the worst of it. You see for the first time in my life, I am genuinely jealous of people – some of them I don’t even know. I am jealous that they have the freedom to gain something I apparently want, I am jealous when I see little babies being born and cute pictures of their delightfully chubby faces all squished and pink, I am jealous that my right to choose what I want to do when I want to do it has been taken away.

Crohn’s strips of you so much. Your dignity, your carefree nature, your ability to throw caution to the wind, your freedom to eat what you want, your ability to be thoughtless in your decision making. Your right to make choices.

I no longer have a choice. I have to do what I am told to do. And I have to do it because it is the best thing to do – for me. And it’s a real kick in the guts!

Would I risk the life of my unborn child. Fuck no.
Would I risk my ability to raise said child because I was not in tip-top shape. Fuck no.
Would I risk my health when I know it’s to my own determinant. Fuck no.

Kids are up against it from the moment they are born. The world is a battlefield both physically and mentally and our little ones absorb so much. If you listen to the news, our kids will inherit a world with damaged seas, holey ozone, polluted water, bigotry, terrorism, president Trump. They are already in for a hell of a ride. So when I get all sulky and feel like turning to a bag of M&M’s (peanut, not plain) I remind myself that although I can’t control my Crohn’s I can do what I know is best.

I know that my squished up little red-faced hellion will come to life one day. I know I will carry that little peanut in a body that can deal with bringing it to life. I know I will be a completely neurotic-kick arse tiger mother. I know it will happen.

I have no idea when we will get the go-ahead, but I know that when it happens it will be the exact right time.

In the meantime, I will continue to torture myself by looking at all the beautiful baby pictures and annoucements, facebook stalking their progress pictures and despite the twinge of jealously I will feel – I know it is nothing compared to the adoring happiness I hold knowing that one day I will have that.

Because Crohn’s may take away my freedom of choice, but it doesn’t take away my ability to dream. It doesn’t take away my hope and it’s never come across a woman more determined than me!

The Great Avoider

I have always been one of those people that can’t help but think of that saying ‘never do tomorrow what you can do today’ – basically, nut up and get your shit handled.

Well, I was. Not so much lately.

I am guilty of becoming a grade A avoider, or as I am affectionately naming myself;

The Great Avoider

Now I should clarify that this is only really applicable to my health. Ironic right, the one fucking area I should be all over my shit like bees on honey, but alas, I chose to turn a blind eye and do ANYTHING other than what I should.

Up until Crohn’s, my avoidance level has always been that of a normal person.

I avoid the checkout at my local woolies where my brother’s hideous ex-girlfriend works. Honestly, who in their right mind wants to deal with that shit #teamlanatialways

I avoid paying my phone bill until the day it’s due. Why would I give those people my money a second earlier than I have to?

I avoid opening my mail. Not once I have opened it and gone ‘yippee, such great mail’. No, just no. If it cant be emailed, snapchatted, facebooked or grammed, I don’t even want to know about it.

I avoid the people in the street trying to convince me to sponsor a little Ethiopian child. I can barely feed my damn self, let alone take on the responsibility of a child that I will inevitably let down when I forget the payment is due and spend the money on coffee only to realise I have now incurred at $10 dishonour fee for overdrawing my account, further overdrawing my account and by the time I sort it out the next payment is due and the cycle starts again – trust me, avoiding this responsibility is best for us all.

I feel the above mentioned level of avoidance is peachy-keen-jelly-bean. And had it of stopped at that, I wouldn’t be sitting here writing this blog as a way to avoid something I’m just not comfortable with.

I just finished reading a blog. On chronic illness. A chronic illness called Crohn’s. A chronic illness that I have. What-the-ever-loving-fuck. I keep forgetting. Stupid I know. But true.

Tonight is injection night. All day today I had one job. Go to the chemist and make sure they have my injection or that they order it in so I have it for tomorrow night. I go past my nominated chemist approximately 8-10 times a day. Every time I enter my office building I pass it. I even fucking wave at Steve or Sandra (the pharmacist) every single time I pass.

My thought pattern today, went a little like this;

Arrival at work; Oh, there’s Steve, I should probably go in and check they have my injection. Hmm, he’s busy, I will come back

Off to lunch; damn I need to duck in and see Steve and check my injection. Hmm, I have to go backwards, I will see him on the way up

Returning from lunch; fuck-a-duck just my luck, I forgot to see Steve. I will go down on my coffee break.

Coffee break;… mid chat… ‘I know I can’t believe it’… waves at Sandra on the way PAST the chemist… continues conversation. Note to self; call Sandra.

Arrives at desk and promptly forgets to call Sandra.

Leaving work; told the hubby I’d leave on time. Crap, I’m late. Oh well, will stop in and see the chemist tomorrow morning on my way into work.

You know what I get for being my own worst enemy and forgetting (avoiding) the chemist today? A fucking stomach ache. Now it could be a stomach ache. But I’d be avoiding the truth if I didn’t dig deep, deep down to that spot that holds my darkest secrets and admit, begrudgingly, that maybe, kinda, sorta, I just didn’t want to deal with Crohn’s today. So I just avoided it all together.

The kicker about avoiding something like a ‘chronic illness’ is when you have a light bulb moment reading an article about your chronic illness and you realise, with crystal clear clarity, this fucker is not going away. There is no ‘cure’ for Crohns.

<insert mild fucking freak out here>

I will always have Crohn’s on some level. If I don’t have active Crohn’s I will be managing my Crohn’s. I will always, be a sick person. And that just fucking pisses me off. Even if they cut the fucker out, they have told me that the chances of my Crohn’s re-attacking the juncture where they re-join my intestines is high. So they want to avoid taking it out for as long as possible. In the next breathe, they assure me that I have ‘heaps’ of gut so they can take it out a couple of times if needed.

Again, I avoid this line of thought. Why wouldn’t I? It’s not pretty. There are no fucking hearts, rainbows or flowers. So yeah, sometimes I just avoid it all together.

I know this is stupid. I wait for the phone call from the numerous family members who will no doubt reiterate exactly how stupid it is when they read this blog, but you know what. Sometimes, avoiding the issue is the only way I can handle the issue.

I feel shit today. Real shit. I have come off the back of two amazing weeks where I lived life. I ate. I drank. I felt good. I got lots of sun. My feet were in sand or inches away from sand. And for two glorious weeks, I wasn’t a person with a chronic illness. I was a bride celebrating life with the love of her life. I was a 30-something year old women ticking shit off her life list and living the fuck out of it. *breaks into song…I am women hear me roar…*

And today. Today, I am a Crohn’s patient. A Crohn’s patient that has to get her injection organised. A Crohn’s patient that has a stomach ache. A Crohn’s patient that has a stomach ache that may be more than a stomach ache. A Crohn’s patient who wants to do anything other than deal with their Crohn’s.

Today I am the great avoider. I am smashing the shit out of it. Today, I am giving myself an A+, I earn’t it!

 

Am I sick?

No honestly, am I? You see I am not sure.

I was definitely sick last week. I know for a fact that I had Crohn’s last week. The vomiting, gut wrenching pain and tears were a dead giveaway that I was unwell.

But am I still sick now? I’m not actually sure. You see now, I am a totally normal functioning human being (well, as normal as I can be). There is no pain, no outward sign that there is anything going on.

I think I have developed something I am trademarking ‘health bio-polar’. This is a totally made-up, not medically factual or supported definition what would be something like;

“The craziness you experience when you are deathly sick one minute and running through a field of daisies, farting donuts the next..”

Before I started with the Humira injections I always had some sort of pain or daily noise that reaffirmed that there was something going on in my gut and therefore I firmly fell into the ‘sick category’. I would be talking to people and the next moment I was breathless from the pain and everyone could tell I was sick.

Now, I have nocturnal sickness (again, made up). I seem to be getting ‘sick’ of a night generally between the hours of 8.30pm – 6am, the time when no-one is there to ‘see’ that I am sick.

Every second Monday night I take that little vile of drugs and jab it into my stomach. Over the weeks since I started the injections, the length of time between the injections and my outwards display of sickness has gotten shorter and shorter.

I spend the evening throwing up the contents of my stomach and praying that I don’t blow chunks out of my nose. Sometimes I get really lucky and have to choose what end goes where – I now have this down to a fine art and tend to keep the porcelain throne warm with my lady lumps while offering my partly digested dinner to the mini esky that takes up residence in my lap. It takes some real coordination to be ‘tootin’ from both ends, but I feel like I am now a master at it.

The hubby slept through the first two instances of the nocturnal sickness but the last one was a real doozy! He was right there with me, mouth breathing through the horrendous smell and ‘wishing’ he could do something to help.

The issue I have with my bi-weekly festivities, is that when the sun rises and the birds start chirping their merry little song, my nocturnal sickness is over. Like a crime scene, the clean up crew has been in and you would have no idea anything has happened.

I look fine. Sometimes I look better than I did the day before.

My cheeks are often red from the tiny burst veins that started exploding when I started with the vom fest. My skin looks dewy from the sheen of sweat and tears that have dried up numerous times over. And aside from the tiredness I LOOK okay.

I almost wish that I could unzip my skin and show you the inside. I am wrecked beyond belief. My stomach muscles are normally so sore it hurts to breathe. My legs, fatigued as they spent the night shaking or running me back and forth. My teeth hurt, if not from the force that everything passes by them, then from the multiple scrubbing sessions to get rid of the taste in my fur ball mouth. My head aches from dehydration and with nothing in my stomach, panadol becomes the devil that I can’t keep down.

Then one day turns into two, then three and there is nothing. Nothing to indicate what happened a handful of nights ago. No noises. No pains. Simply nothing. And I start to wonder – am I sick?

Is this nothingness the end? Am I cured? Have I finally reached what ‘they’ call remission?

The most ironic thing is – this blog has literally taken me over a month to write. You see, every time I revisit it to finish it off, I get sick. It has become my curse. The name has been mocking me!

Like all things Crohn’s, I am gently lulled into a blissful nirvana of health and happiness and I feel like I can almost cancel all the doctors appointments, forget the humira schedule, reminders to order, pick up or inject myself. I can almost, almost be ‘normal’ again – the normal that doesn’t have me checking my schedule for the last ‘poo’. The normal that doesn’t have me counting my medication supply to make sure I am stocked up. The normal that isn’t worried about if I will ever have a month without logging sick leave. The normal where I wake up and feel refreshed instead of a little less exhausted than yesterday.

I have come to the conclusion that I will never be 100% healthy again – I guess on some level, I will be managing my Crohn’s or monitoring my Crohn’s. I will always be checking something – whether it’s the state of my intestine or my general health – I will always be somewhere on the ‘sickness’ scale. The goal now is to try and stay as close to 100% healthy as possible.

So I answered my own question – yes, I am sick… But I’m about 80% healthy… And that’s pretty good if you ask me.

Mx

 

 

 

 

Guilty

I am so sick of feeling guilty.

Guilt; the fact of having committed a specified or implied offence or crime

Being sick on this level is a complete shit storm. Sometimes literally!

This fucking c-bomb of a disease has my life turned upside down and with that a heap of things and people are therefore affected. Let’s take a look at the last week of my life, shall we!

It started like any normal week – I was tired. I am always tired so this is nothing new and nothing I don’t expect. I made it into work relatively on time and mentally high-fived myself for those small mercies!

Monday came and went without much fan-fare and I tucked myself into bed pleased that I had made it through yet another day – success all round!

Tuesday, now this is where things start to slide down hill. Imagine a truck that has taken a corner too fast and busted through the guard rail and is now teetering on the edge of the cliff. One wrong move and that truck is going over to the great abyss – this is exactly what I woke up feeling (I am the truck by the way)!

I felt sluggish, even more tired than normal and the body gremlins were starting to stir. Then a thought hit me ‘when was the last time I did a poo?’ For a normal person, this is probably not such a significant question – for me, it’s huge. Hubby always says;

‘Hunni, if you don’t shit, you die!’

Oh god, am I dying now? After a couple of minutes and a solid attempt at basic maths – I came up blank. Oh crap! This isn’t good. Unsure of when the last ‘evacuation’ on the brown slip and slide had occurred I came to the conclusion that this explained the general decline in my mood and feeling of well being.

Tuesday dragged like a cement ball attached to a convicts leg… The further through the day I got the heavier that ball got. Now this is where the guilt starts.

I was foul – TO EVERYONE! Come on, you would be too if your poo was poisoning you from the inside out! But this was next level, I growled at everyone I came into contact with, I was short fused with the normal levels of stupidity I tolerate and I even went as far as to loudly huff at the length of time it took the elderly couple in front of me to walk off the train. I was a monster. This isn’t normal behavior – but I kept stewing and festering.

Wednesday. Armageddon. The asteroid my life is attached to was hurdling it’s way towards earth at rapid speed and everyone knew shit was about to go down. With nothing knocking at my internal back door I had no choice but to hit the laxatives. The Lanati attitude was off the rictor scale and everyone that came across my path, felt the wrath of my bipolar moods and general distain for life.

I made it onto the train and the guilt set in. Like a baby being rocked to sleep the train gently rocked me side to side and my guilt monster started to take root.

I felt guilty for how I was handling life.
I felt guilty for how I was snapping at people when I didn’t really mean to.
I felt guilty for lying when people asked how I was (I lied, of course).
I felt guilty for feeling guilty.

And then the pain hit. My penance for being such a horrible bitch. The gut gremlin was back and he was pissed off. I ate some eggs and all hell broke loose. I placed my hand on my stomach at exactly the right spot and I could feel my intestine harden and then soften in time with the pain. Panadine Forte was consumed and I eventually drifted in and out of pain and sleep for the rest of the night.

Thursday. Guilt level 8. The text to the boss. I swear this guy must read my texts and roll his eyes ‘here we go again’. I can’t do it. I can’t move from the bed. Physically I am exhausted. My guts have spent all night awake playing ping pong with my insides and that has made my head hurt. I just can’t. So I won’t. I tell him I will work from home and spend the rest of the day feeling shit for letting the team down.

I feel so guilty for not being at work.
I feel guilty for sleeping in the middle of the day between meetings.
I feel guilty for being off my game and losing focus in my phone meeting.
I feel guilty for breaking my carb-free diet and having soup noodles because chewing food is too much to take, so soup it is.

Friday. It takes a while but I resurface and head to the office. I am greeted with genuine shock because I have made it. Innocent comments like ‘oh, you look good’, make my blood boil and the snarky gremlin rears it’s ugly head.

I feel guilty that I don’t look more sick.
I feel guilty that they might think I was lying.
I feel guilty for questioning them, because of course they know I am not.
I feel guilty for jumping to conclusions.

Saturday. Calling in sick for job #2. The last day. After making the call earlier in the week to say farewell to my second job because I physically can’t do it, plan a wedding and manage a critical illness at once – I woke again in the same horrible fashion as earlier in the week. I couldn’t do it. I was too sick.

I feel guilty for calling the girls and informing them I’m not coming in.
I feel guilty for missing my last shift.
I feel guilty that everyone’s day has been rearranged to accommodate my sickness.
I feel guilty for making the decision to leave them in the first place.

Sunday. A day to myself. I wallow. I reflect on the week and I don’t like how I was and again I feel guilty for that. I thought the worse I would ever feel was when I stole Hubba Bubba at age 7 and mum made me take it back to Woolworths. I was a mess. I had never felt so guilty in my life for taking something that wasn’t mine.

That guilt is nothing to how I felt when I realised that my biggest cheerleader, the Cher to my Sonny, the Yoko to my John, the George to my Amal, the one person that no matter how shitty and foul I was, handled me and my moods like a champ – the Hubby. The poor bastard was put through the ringer and he did it with compassion and grace.

I started to think.

Does Crohn’s feel guilty for stealing part of my life?
Does Crohn’s feel guilty for stealing days of my time when I am so sick I can’t get out of bed.
Does Crohn’s feel guilty for the events I miss because I am too sick to attend.
Does Crohn’s feel guilty for the looks it puts on the face of my nearest and dearest who watch me breakdown and cry or see me brought to my knees in pain.

No. If Crohn’s was a person I would kick it in the clunge and unfriend it from Facebook.

But alas, I can’t do any of that. My only option is to try and stay positive. To manage the bits I can and to try not to be a total arsehole to everyone despite the fact I feel crap. I can’t chose what it throws at me, but I can chose how I deal with it. I can’t guarantee it will be handled well but I can try.

And the first thing I am going to do is – cut myself some slack and get off the guilt train. Those that love me will understand, those that don’t – well they probably don’t matter that much anyway.

This week will no doubt have it’s ups and downs, but I chose to embrace them and leave my guilt in last week.

Weakness

I can be known as a hardarse. My job requires it and to be honest, I relish having tough conversations – as long as they aren’t personal. In my profession, I thrive under pressure and do better when things are tough and shitty conversations are needed. I want to bust balls. I want grown men to shake in their boots (sometimes). I can’t help it. I get a sick satisfaction from it.

I think I get my no-nonsense attitude from my dad. Some of my fondest memories involve dad and his calm, tough demeanor. Dad is the type of man who when accidentally connecting a hand-held grinder to his nipple, instead of calling ‘tools down’ and getting to the nearest doctor or hospital, he simply grabbed some electrical tape, tapped the wound shut, finished the job and THEN made his way to help.

This is the same man who tried to remove a fishing hook from his hand for a solid hour or so before admitting he probably needed a professional on the job and allowing us to take him to the doctor. He didn’t get any pain meds, ‘what for’ was his response when asked if he wanted them, and kept the hook as a keepsake.

Now, you might think that he was doing this for some sort of ‘bad arse’ persona or status, but it’s classic Dad. He is a no-fuss, just get on with it kind of guy. He had to be. With a family to support and a business to run, Dad doesn’t have time for fuss. I love this about him and often admire the strength it takes to push through some rather painful situations.

I do think this attitude has rubbed off on me and up until recently, I saw people who whinged about being unwell as ‘weak’.

The whole, I can’t work today because I have a headache made me want to ninja kick people in the clunge and say ‘now you have something to whinge about you fucktard’. Take a fucking panadol and get on with it – I acknowledge that this makes me sound like a cold, unsympathetic arsehole. I tend to agree. But come on, a headache? Migraine, maybe. But a fucking headache – your taking the piss right?

I have spoken about irony a number of times and the role my delightful C-bomb plays and putting things into perspective.

Being sick, not I have a headache sick, but I want to take a knife and cut part of my body out – sick, takes a strength you can’t possibly imagine. There is no weakness in this type of sickness. In actual fact, I think it is reserved for the toughest of people.

I’m not tooting my own horn here – I still think I am on the milder scale of what this disease can make you endure – and my disease is ‘baby cakes’ compared to some others, but I have to say, my appreciation for anyone battling a disease has sky rocketed. I mean, put me on the Apollo and shoot me to the moon – because that’s how high my appreciation has gone.

There is no weakness in being sick.

The strength it takes to convince yourself to take another minute of a pain that nobody could possibly understand is likened to Thor being slapped in the face by that fire breathing monster his brother sent to neck him and still getting back up.

It takes guts. Real tough, not riddled with disease, guts to consciously decide not to give up. Your literally on your hands and knees, spewing your guts up and crying through your mascara and you have a choice. Give up and call time or muster every fiber of your being to fight. To find a strength you didn’t know you had, to fight your mind telling you to just call time, give up and sit down.

In the past, strength to me was something I discussed on the gym floor. I’d tell people that I can leg press 120-130kgs and they respond, wow your strong (have you seen these Italian thighs!). I used to take pride in this – hell yes, I’m a strong independent woman! I can lift weights with the best of them.

BULLSHIT.

Any monkey can train themselves to lift weights. This doesn’t indicate strength. Being down and out on your arse and choosing to get back up is where it’s really at.

Finding yourself wearing 3-day old vomit stained clothes, your boobs swaying in the wind, hair a matted mess, tear stained cheeks, eyes covered in crusty eye jam and the rankest breathe known to man and still deciding you have everything under control and can take on the world is where it’s at.

There is no weakness in being ill. In fact, I think it takes a strength like no other to roll with the punches your disease throws at you and choosing to get back up, time after time. I watched Creed last night and here is Apollo’s son getting punched in the face, punch after punch – he has a split eye, the other is closed completely, he is spitting blood and taking body shoots, Rocky’s threatening to call the whole thing off and I am sitting there thinking – ‘I know how that poor bastard feels’.

When people say they are sick, my first thought now is ‘I hope it’s nothing serious’. And I mean this. I want people to tell me they have a headache so I can offer a Panadol and ask if there is anything I can do so they can go home and rest. I want you to have nothing more wrong with you than a simple headache. In fact I want you to have nothing wrong with you at all.

And even if people are taking the piss – then so be it. The guilt they already feel for having to lie and do the fake ‘cough, cough’ is probably worse than anything anyone else could say or do and honestly, who cares. Sometimes we need a mental health day or better yet, the ability and freedom to say ‘nope, not adulting today, I am staying in my jammies and chillin’.

So I ask you, next time you hear someone mention they are sick – don’t meet that statement with anything other than compassion and ‘can I offer you a Panadol?’.

Mx