Debbie Downer Post

I don't do many downer posts. Mostly because they annoy me. When I go back and read them weeks later I want to grab myself by the shoulders and yell "Harden up, Princess!" Because at that point I'm over it. Whatever has happened, whatever event has led me to that place, is done and dusted. I have a group of unpublished posts in my draft folder where I have spilled my incoherent emotional baggage. Writing helps me make it through, but only a few make it onto here. And those that do? I often think of them as the blogging version of drunk posting. When my emotions are raw my judgement is a little off. What should probably remain out of the public domain ends up splashed across the screen for all to read. In my more sanguine moments I know that life is hard enough without subjecting anyone else to my moaning and self pity. Will this one make onto the blog or not? I don't know. We'll see. It depends on how much of a "screw it all" mode I am in by the end of my purge.

I am over being sick at the moment. I am tired of the unrelenting nature of chronic illness. I am tired of the fact that at the moment I am not getting a break. I am tired that none of my usual tricks, honed over years of careful trial and error, no longer seem to work. Usually, I have a bad patch, followed by a less bad patch, followed by the inevitable next bad patch, and so on. It's a pattern I've become used to over the past seven years. There is comfort in predictability. Those little lulls make it bearable. They give you breathing space. A time to sit back and collect yourself. To find equilibrium once more, so you can keep on keeping on. But my lull is long overdue and I'm feeling stretched beyond my meagre abilities.

There is only so much you can take before you start to fall apart. Before the cracks start to appear. Before others start to see the cracks, and it gets harder and harder to keep it all together.

I tend to retreat at this point. I move to the periphery of life, only engaging sporadically and superficially. It's a matter of survival. When you're clinging on by your fingernails, the slightest extra bit of stimuli is too much. Silence and alone time are life-sustaining. More than that, they are sanity-sustaining. Kindness or caring from those nearest and dearest is not always a benefit at these times. Part of me wants someone to give me a hug and tell me, "it'll all be alright". The other part of me knows that those words, or worse a comforting touch, will break through the fragile shell of control and result in an unwanted flood of tears and misery. The irrational part of me wants both comfort and to be left alone. The irrational part of me expects my family and friends to intrinsically know this. Despite the fact I can barely understand it myself.

I know I am irritable. Everything and anything sets me off. A little corner of my mind knows I'm over-reacting but that doesn't stop me. Everything sucks. Everything is a personal attack. Every single little disappointment or mishap becomes highly salient. Everything is seen through a negative mindset. Socks not unrolled before they go in the laundry equals a personal attack. The dishwasher not unpacked equals the end of the world. I look at my Facebook newsfeed and hate everyone's perfect lives. I hate that they are travelling, that they are at the park, out to dinner, out to the movies. I hate that their lives seem golden. In my rational moments I'd never think that way. I am happy that my friends and family are enjoying their lives. I would never wish my life on them. And I know no one's life is perfect. That Facebook is a sanitised version of reality. But not in that moment. In that moment every irrational, narky, petty and horrid aspect of my mind comes to the fore, and I hate the world and all who inhabit it. I hate the reminders of a life I no longer have. But I can't stop looking. I can't stop seeing the perfection. I can't stop seeing that the world continues on without me. I can't see the reality because I'm too busy revelling in my misery. I have masochism down to a fine art. And in these moments I embrace it whole-heartedly.

I haven't had a break in weeks. I'm tired. So tired. More tired than I have been in months. My GP tells me I must consider that I've had a jump in progression. Now I can't get that out of the back of my mind. I keep trying to give myself a pep talk. "It's just the Summer heat. I'll be fine when the season changes. I just need to pace myself more. I just..." But in the moment I don't believe myself.

I realised the other day that I have forgotten what it is to be well. I've had health problems ever since I can remember but always there were breaks. Periods of relative good health where I got on with life just like everyone else. But that has now disappeared. I have felt sick and/or been in pain everyday for years now. One of my good days would send most people straight to the doctor or ER. I think that's what others understand least and what frustrates me most. And I realise I don't know how to convey it any more. I have lived so long with illness that I can no longer see it clearly. I play it down, I avoid the doctors with symptoms that would make others panic. I don't talk about it because I feel whingy. So I let things go for longer than I should and don't tell my family about the things that would worry them. I just exist and suck it up and put on my happy face. Not that there's really much choice. But you get weary at times.

I can no longer eat without pain. It doesn't matter if I adhere to my dietary restrictions. It doesn't matter what it is. Even water can trigger the pain now. My weight continues to drop and it is brought up at each appointment, with no solutions to be had. I am back to worrying about passing out each time I go to the loo or shower, although in truth my gastro issues are what worry me most. My general health has deteriorated and weakness increased. I try medication after medication and nothing works. Everything is just hard. And so, like many others, I have learnt to cry into my pillow at night so as not wake anyone, because the pain gets bad and sometimes it's just too much, but I just don't have it in me to talk about it all yet again. It's hard to keep on smiling when you feel dreadful 24/7 and all your emotional reserves run dry.

And I want to just be able to say it all free of judgement (both my own and that of others). Free of platitudes. Free of comparisons. I just want to give it all voice and have someone say, "I get it". No advice. No solutions. No pep talks or sweet words that'll crumble my carefully honed composure. People are uncomfortable with illness. As a society we want to fix others to make ourselves feel better, to avoid feeling awkward or uneasy. We miss the point that sometimes it's okay to just listen and say nothing.

The reality is that whether this is a permanent downturn or just an extended rough patch I will adjust. I always do. You can't live with chronic illness for years and not find a way through these times. It's just the getting there that's the hard part. It's knowing that just like physical health waxes and wanes, so does my emotional reaction to it. I want to be better at dealing with it all, but sometimes it gets the better of me. Sometimes I can't shut out the thoughts and feelings I hate so much. It feels like weakness. Or perhaps more correctly in my mind, failure. I'd never think that of anyone else. But me, that's a different matter in my irrational mind. I am my own worst enemy in that respect. I want to deal better but apparently I'm human, and that sucks.

Michelle

This song Take Me or Leave Me by The Magic Numbers, is always on high rotation in my maudlin play list. Everyone has a maudlin play list, don't they? You know for the sucky days. Now to toss up if I can manage half a glass of wine in the bath. What's it going to do? Make me sick? Bwahahahahaha.....

.....and the horse you rode in on.

Warning: Woe is me post ahead.  May contain TMI, pathetic loads of self-pity, a wee bit of incoherent ranting, and sailoresque swearing.

Being ill has knobs on.  It really does.  Just when you think you've taken a step forward, you find yourself hugging your porcelain lover or sprawled out on the cold, hair-covered tiles of your bathroom.  It's frustrating beyond belief when you do the old "think positive" trick and your body says "Hell no, crazy woman.  You're my biatch, and you might as well get used to it".

My gastric system is out of control and frankly the last few months have sucked.  All the drugs I take are basically doing bugger all and I often wonder why I persist.  I look back at this depressing, rambling, vlog I did a month ago and realise nothing has really changed.

It's rather confronting to have the truth displayed up there is full pasty colour (and what's with my weirdarse left eye?).  In some ways I am better than when I went into hospital, though I'd be hard pressed to find specifics.  And no amount of positive thinking is going to change the facts.  I can't even get back into the GI specialist until the end of November so I am stuck in a gross no man's land that has left me pretty much housebound and dependent, since August.

Whilst, the physical symptoms that I currently have are quite repulsive and hard to deal with, it's the way they impact on my day-to-day life that is causing me the biggest heartache.  Yes I need to go to the loo a bazillion times a day, that I can sort of deal with, though my butt hole may disagree.  But this one issue impacts on my ability to leave the house.  I have to be sure I am in close proximity to a loo at all times.  When I need to go, I need to go immediately.  There is no choice.  There is no clench your butt cheeks and will your sphincter to stay closed, it's a mad dash to the closest bathroom with a quick prayer to every deity known to man that you'll make it.  I even have an emergency pack in the car, just in case the humiliating and downright disgusting sphincter fail should happen to occur (it hasn't yet, but I will now run around and touch every piece of wood in my house). Yep, I'm living the dream right now.

Then there is the joy of the public loo to contend with.  I don't have time to wait for the key to a public bathroom.  And more importantly, I don't want to have to use the rancid petri dish that is the public toilet. Particularly as the last few months I have come close to passing out each time I go.  Face planting on my own tiles is not great, but doable.  Face planting on a melange of strange short and curlies, and mystery 'deposits', in the unisex loo of the local 7/11 is not high on my 'to do' list.

The logistics are only one fun part of the problems associated with increased gastric symptoms.  Going so frequently, means weight loss, which in turn, means increased Bob symptoms.  I am exhausted.  I have spent more days confined to bed in the last few months than I have in the previous year.  More days where standing becomes a Mission Impossible.  More days where simply showering leads to squishing magic carrots down the shower drain with my big toe, and crawling back to bed.

Some days start relatively okay and I make plans to catch up with friends.  Stupid, delusional woman. But my body is currently balanced on a knife edge and one little thing leads to a big ugly fall.   That one thing could be doing a load of washing.  Daring to sit out in the garden for 10mins.  Or even, the simple act of showering.  Last week I was really looking forward to seeing my best friend, but an hour before she came over I had to cancel.  Of all the friends in my life, she is the one who is never phased by me being sick.  My being KOed on the couch would be okay, we'd still chat and laugh, I'd just be horizontal and vague (not unusual). But on that day I knew I couldn't even do that one simple thing.  And that's what I hate about this whole illness crappola.

I can deal with the physical symptoms.  You get used to managing.  To becoming creative (eg cooking whilst seated).  It's not pleasant, but it's part of the drill.  I look at the scales that class the severity of Bob dependant upon criteria such as heart rate, blood pressure, how long you can stand, and think how inadequate they are.  The severity of Bob and other illnesses is related to how much they impact on my life, not whether my bp drops into my toes when I stand.

I am shat off that I can't drive, that I can't just go for a coffee, or even, sad as it is, do the grocery shopping.  I am peeved that this illness stops me from catching up with a dear friend.  I am crapped off that I can't participate in my family like I want.  I want to punch well-meaning people who tell me to "have hope", 'it'll get better", or "you just need a positive attitude".  I don't want to be 'brave', or an 'inspiration' or all the other words that get tossed around.  Nor do I want the expectations that are attached to such labels. I am neither. Dealing with the hands you are dealt, when you have no choice, isn't 'courageous', it's merely practical. Bare bones, one step in front of the other. Illness is ugly and messy and sometimes you just want to scream. And so I am angry, in ways I can't even articulate, that the small amount of freedom I had prior to August has pretty much evaporated.

Some days, living with Bob is like treading water, maybe if you're lucky a little sculling whilst you float on the surface for a while. Other times it feels like you're drowning under the weight of the emotional, social, and psychological crap that comes along with the diagnosis. I don't want to acknowledge that with no change since August, this may be my new normal. I can't wrap my head around that yet.

So instead I take the oh so mature high road and say to Bob and my gastric system, "Fuck you, and the horse you road in on".

Tomorrow I'll paint on my happy face, fight through my bad attitude, and keep on keeping on. But for today I choose the classic "Pout and Wallow" method of dealing. Oh how proud my old psychologist peers would be.

Michelle

Nothing says I can't wallow and listen to funky 80s dance hits.

Limits

I have a sneaking suspicion I may be one step away from reaching my limit.  I always knew I had one.  I was just cocky enough to believe that mine was a hell of lot bigger than everyone elses.  The Grand Canyon of limits.  But of late it seems more akin to a thimble, than some humongous marvel of the natural world.  Of late the continual blows seem to have reached critical.

I've always been the one who holds it together when everyone else is unravelling.  I've always been realistic and practical.  I have the stifling of emotions down to a fine art.  I don't ask for help.  I don't rely on others.  I don't share my demons.  I sit and hold the hands of others whilst they give free reign to their emotional wildfires.  I pick up the pieces.  I pat the hands.  I make the soothing noises.  I distance myself from reality to give what is needed.  And those that receive my ministrations continue, oblivious that my need is as great as theirs.  A secret I hold tightly to my chest.

But reality is a persistent cow.  All my hard fought battles to be positive and hopeful are being swamped by a relentless tide of dread.  All the negative thoughts I suppress so expertly, are welling up, like fetid water seeping through the rocks beneath my feet.  I feel myself sinking, dissolving, into the murky swirl around my ankles and I don't even know where or how to begin to look for aid.  I sabotage myself, continually refusing permission to even think of succour.

I rally against it.  In vain it would seem.  All those little shadowing voices.  Little bites, ripping at my spirit.  Normally I can beat them back.  But today, today they are goose stepping their way across my being, relentless in their desire to conquer.  I am but the dirt under their boots.  They care not what I feel.  They are as devoid of emotion as insects.  Driven on by an instinctive need to consume.  I fear that today they will take all that I am.  Part of me wonders if submission would bring relief.  Part of me wants to let that seductive darkness surround me.  To lie in it's comforting embrace.  To end the exhaustive war for me.

I want to curl up.  To hide away.  I want to cry out "no more".  The emotions I have long suppressed threaten to rise up and sweep me away.  I fear them as others fear death.  I fear that to let them have voice I will lose the me I have long fought to create.  I fear to unshackle them and reveal the truth.  To expose that the long crafted façade is really a fraud.  A fraud perpetuated not just on others, but also myself. 

My voice cries out "This isn't me.  I am not like this".  But the rising tide of doubt and dark says otherwise.  How do you fight an enemy that comes from within?  Walls can be built but the enemy remains on the other side.  It sits there patient.  Waiting.  It knows it's time will come.  It knows that as hard as I deny it, it still exists.  In my waking nightmares.  It roams the corridors of my mind, seeking escape.  Leaving a trail of wreckage in it's wake.

It has many names; doubt, hopelessness, helplessness, guilt, emptiness.  Once released I know not whether I can ever restrain it again.  To allow it free reign may let forth an endless and destructive torrent.  I fear to lose myself in that moment, swept away forever in the darkness.  To never regain the hard fought illusion of strength.  Today it pounds heavily at the door.  Today the cracks have widened.  Today I fear it may gain admittance. 

I never use the word 'hope'.  It has never been part of my vocabulary.  Hope is a thing for those who cannot bear the harshness of reality.  Hope is bound tightly to it's mate, disappointment.  To allow it entry is to also give admittance to more pain.  Hope is for fools.  But today I find myself envying those who have hope.  Today I want a little piece of that for myself.  Today I want to believe that things could get better.  That my body may finally be healed.  That the wounds to my heart and spirit may someday be less raw.  I don't care if it's delusional.  I only want it for a moment.

Michelle