It started off so well. Today.
The sun was shining, the birds were singing, I woke up.
It was glorious, waking up, on my own, without any exterior help. No pain, and no mini voices disturbing my slumber.
I yawn, I stretch, I assses.
Bag change day. Do I have the energy? Yes.
In that case, will I take a bagless shower beforehand? Yes
Children still asleep. What time is it? 7.15 am.
Do I wake them now, or let them sleep a bit longer? Let them sleep, then I can hopefully have an uninterrupted bagless shower, and apply new bag without my three year old trying to poke my Stoma.
Kitchen a mess. Will I clean it? Not now, maybe later?
I head to the bathroom. Turn on the radio, remove my bag and get in the shower.
Heaven.
The hot water cascades over me whilst cheesy pop music plays on the radio. I sing along to Queen's "Don't stop me now", and the lyrics resonate deep inside - "I'm having such a good time, I'm having a ball..." as the water invigorates, stimulates, refreshes and renews. My skin is tingling, my stoma is behaving, I feel alive. I feel well.
The children come down. I fix them breakfast, pack their lunches, get them dressed.
I assess.
It's a beautiful day. Do we walk to school or drive? Drive. I don't want to push it.
Success.
I get through the school run without incident. I have a full day to myself. The sun is shining and I don't feel like shit. The world is my Oyster.
I assess.
Kitchen a mess. Will I clean it? Not now, maybe later.
Living room a mess. Will I clean it? Not now, maybe later.
I sit on the sofa, put my feet up, turn on Netflix.
Hours pass.
I assess.
I have acheived nothing. The kitchen is still a mess, as is the living room. It is still a beutiful day and I haven't taken advantage of it. I have sat on my arse, only rising to eat, piss and empty.
I am consumed with guilt. I have spent the past three weeks doing nothing. The housework has been neglected, along with my personal hygeine and relationship with my fella. Today I was presented with an empty house and no fatigue - the rareset of gifts. The perfect oppertunity to pick up the slack, take the reins, restore some order in the house and do my job. Instead I chose to do absolutely fuck all.
I CHOSE to do fuck all. I didn't do fuck all because I wasn't capable of doing fuck all, I did fuck all because I wanted to do fuck all. And just like that, guilt is replaced with glee.
I assess
My partner will be home soon. Will I have to go to bed early? No, I can stay up and spend some time with him.
My daughter needs dinner. Do I have the energy to cook? Yes.
I turn on the dishwasher, I wash some pots, I make her dinner. I am still feeling well.
My fella returns. He asks me what I did today. My rely - Fuck all. We both laugh.
Out of nowhere, the niggling turns to discomfort, discomfort to pain, pain to agony. Just like that. No warning.
I assess.
What time is it? 8.00 pm.
Can I ignore it? Stay up and spend some much needed time with the Old Man? No. The pain is all consuming and written all over my face.
He looks at me, tells me to take a pill and helps me up to bed.
Defeated.
It started off so well. Today.
Thursday, July 17, 2014
Friday, July 4, 2014
A race against yourself.
That heavenly moment between sleeping and waking. The moment when everything is as it should be. Perfect.
Just as your brain is telling your eyes to open, realtiy comes flooding back and it hits you like a wave, and as each memory from the day before consumes you, threatening to drown you in despair, you realise that somethng is different, and that dispair is instantly replaced with euphoria.
You notice that although you feel groggy, you also feel rested. Like you have slept, and that sleep has replenished your energy stores.
You stretch, open your eyes, and wait. Wait for the all too familiar bus to sneak up and knock you into a brick wall. But it doesn't.
Your mind starts to race. Can it be? Can today be the day that your body decides that it no longer hates you? Will you actually be able to get shit done? Have a shower? Brush your teeth? COOK? The excitement is almost too much to bear. You can take your daughter to school, give her a kiss at the gates. Walk home and feel the sun kiss your shoulders.
You get up, still full of energy and now full of hope. Walk down the stairs and into the living room, to find your partner asleep on the sofa. He has selflessly set up camp down there in order to give you sole use of the bed in the hope that you will get the rest that you so desperately need. You hear your daughter stirring upstairs, and just as you're about to tell her the news that she has been longing for all week, that you are well enough to accompany her, you walk into the kitchen and you change your mind.
The eveidence of this latest bout of malaise surrounds you. There is the meal in the slow cooker that was started the day before but abandonded. The dishwasher, open and half full, it's remains remaining on the counters. The laundry - clean and dry on the clothes horse and line in the garden, the rubbish bin - full to the brim, begging to be taken out.
The indignant anger starts to bubble. you feel it in the pit of your tummy. Why has nothing been done? Why is nobody helping? Why does nothing get done unless you do it? And then you hear a snore from the living room. From the man on the sofa. The man who is on the sofa for you. The man who has spent the past week as a glorified taxi driver, taking you to and from appointments, the Doctors, the hospital, the emergency room, the supermarket, your children to and from school, nursery, their friends houses. He has organsied their meals, your meals, washed that laundry that is hanging on the line, wiped your son's bum, taken him to the potty in the middle of the night and ended up covered in piss as a result, watched helplessly as you are prodded, poked, stuck with needles, hooked up to drips, and all the while trying to build a business from the ground up, so you can remain in the house with the dirty dishes and overfilled rubbish bin.
So you take out the rubbish, fill the dishwasher, wash the pots, kiss your daughter good morning, and keep your mouth shut about walking her to school, as she has seen you still in your pyjamas and has rightly assumed that you won't be, and she doesn't mention it, and your heart fills with love and gratitude for the snoring man on the sofa who has done his best to hold everything together in your demise, and pride and admiration for the brave seven year old girl who unsderstands far more than she ever should about your chronic condition.
As you're folding the laundry, you remember the thing that should have sprung to mind the instant the euphoria hit. Your body is a tricky bastard. You may feel full of energy now, but that doesn't mean you
will in an hour or even ten minuets. You have a finite anount of juice, and you have no idea when it will be gone or how long it will last. You have a series of choices to make. Have a shower and brush your teeth, or finish the laundry? Make yourself some breakfast or finish the dinner you started last night? Try and do it all really fast thus expending more energy but potentially getting it done, or go slow and steady but risk running out of steam before the jobs are completed? You sit down, as the inner monologue is exhausting, and the second you do, you regret it as the act of standing up will utilise precious energy thus taking it away from a job already on your list.
The laundry gets folded and put away. A new load makes it into the machine. The ironing will have to wait, what's another few days matter when it's already been five weeks? The dinner is resumed. You can see the bus approaching, and you are almost against the wall. You make your way upstairs and back to bed. As the bus hits, you regret not brushing your teeth.
Just as your brain is telling your eyes to open, realtiy comes flooding back and it hits you like a wave, and as each memory from the day before consumes you, threatening to drown you in despair, you realise that somethng is different, and that dispair is instantly replaced with euphoria.
You notice that although you feel groggy, you also feel rested. Like you have slept, and that sleep has replenished your energy stores.
You stretch, open your eyes, and wait. Wait for the all too familiar bus to sneak up and knock you into a brick wall. But it doesn't.
Your mind starts to race. Can it be? Can today be the day that your body decides that it no longer hates you? Will you actually be able to get shit done? Have a shower? Brush your teeth? COOK? The excitement is almost too much to bear. You can take your daughter to school, give her a kiss at the gates. Walk home and feel the sun kiss your shoulders.
You get up, still full of energy and now full of hope. Walk down the stairs and into the living room, to find your partner asleep on the sofa. He has selflessly set up camp down there in order to give you sole use of the bed in the hope that you will get the rest that you so desperately need. You hear your daughter stirring upstairs, and just as you're about to tell her the news that she has been longing for all week, that you are well enough to accompany her, you walk into the kitchen and you change your mind.
The eveidence of this latest bout of malaise surrounds you. There is the meal in the slow cooker that was started the day before but abandonded. The dishwasher, open and half full, it's remains remaining on the counters. The laundry - clean and dry on the clothes horse and line in the garden, the rubbish bin - full to the brim, begging to be taken out.
The indignant anger starts to bubble. you feel it in the pit of your tummy. Why has nothing been done? Why is nobody helping? Why does nothing get done unless you do it? And then you hear a snore from the living room. From the man on the sofa. The man who is on the sofa for you. The man who has spent the past week as a glorified taxi driver, taking you to and from appointments, the Doctors, the hospital, the emergency room, the supermarket, your children to and from school, nursery, their friends houses. He has organsied their meals, your meals, washed that laundry that is hanging on the line, wiped your son's bum, taken him to the potty in the middle of the night and ended up covered in piss as a result, watched helplessly as you are prodded, poked, stuck with needles, hooked up to drips, and all the while trying to build a business from the ground up, so you can remain in the house with the dirty dishes and overfilled rubbish bin.
So you take out the rubbish, fill the dishwasher, wash the pots, kiss your daughter good morning, and keep your mouth shut about walking her to school, as she has seen you still in your pyjamas and has rightly assumed that you won't be, and she doesn't mention it, and your heart fills with love and gratitude for the snoring man on the sofa who has done his best to hold everything together in your demise, and pride and admiration for the brave seven year old girl who unsderstands far more than she ever should about your chronic condition.
As you're folding the laundry, you remember the thing that should have sprung to mind the instant the euphoria hit. Your body is a tricky bastard. You may feel full of energy now, but that doesn't mean you
will in an hour or even ten minuets. You have a finite anount of juice, and you have no idea when it will be gone or how long it will last. You have a series of choices to make. Have a shower and brush your teeth, or finish the laundry? Make yourself some breakfast or finish the dinner you started last night? Try and do it all really fast thus expending more energy but potentially getting it done, or go slow and steady but risk running out of steam before the jobs are completed? You sit down, as the inner monologue is exhausting, and the second you do, you regret it as the act of standing up will utilise precious energy thus taking it away from a job already on your list.
The laundry gets folded and put away. A new load makes it into the machine. The ironing will have to wait, what's another few days matter when it's already been five weeks? The dinner is resumed. You can see the bus approaching, and you are almost against the wall. You make your way upstairs and back to bed. As the bus hits, you regret not brushing your teeth.
Wednesday, May 14, 2014
Overwelemed
Overwhelmed. That feeling you get when it feels like the air is pushing down on you, crushing you, and it's an effort to keep you head held high. And high is how you must keep it, otherwise they will know. Know that you are petrified that at any second it will all come crashing down. The life that you cherish with the people that you love, in the home that you have tried to make into a sanctuary, a safe haven.
Every day, you wonder if today will be the day when you crack. When you drop the balls that you have been struggling to keep in the air. As you open your eyes, still damp from the tears that send you to sleep night after night, you silently pray that this morning will be different. This morning you won't have to coax, cajole, beg, plead, scream, shout, cry and curse. That you won't be left feeling demeaned, humiliated, deflated, defeated, hopeless, helpless, when, yet again, you fail. You can feel your ever hardening heart filling with anger, resentment, bitterness when all it wants to feel is love and compassion. You remind yourself that it is not intentional. But that doesn't make the pain any less real, and the pain is all consuming. It is exhausting. It sends your mind to an unfamiliar place. A place where the sound of your children's voices make you recoil in fear, makes your fight or flight response kick in as you know that at any moment the tears will start and you can't bear for them to see. A place where you wish you were invisible so you could crumble in peace. A place where solitude is all you crave. And sleep. Uninterrupted and dreamless sleep. Oblivion.
You're driving, and you catch yourself drifting across the the lane into oncoming traffic, you haven't been concentrating as your mind is still in that unfamiliar place, and for a nanosecond you contemplate staying there, how quickly the pain could be over. And as quickly as the thought crosses you mind, you realise how wrong it is, and suddenly you can't breathe. You have to pull over as your vision is blurred with tears as you cannot believe what has just happened. You realise that you are allowing the disease of another permeate your psyche. Muddy your waters, comprimise everything you hold dear. And you are left wondering if you have been worrying about the wrong person. Putting your efforts into the wrong cause. If in fact it is you that needs help. That you have been so obsessed with the depression of another that is has snuck up and bit you on the ass and you hadn't even noticed.
Overwhelmed. That feeling you get when it feels like the air is pushing down on you, crushing you, and it's an effort to keep you head held high. And high is how you must keep it, otherwise they will know. Know that you are petrified that at any second it will all come crashing down. The life that you cherish with the people that you love, in the home that you have tried to make into a sanctuary, a safe haven.
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