Archive | May, 2012

Country ER

20 May

Roland pulls up into the disabled bay- country hospitals are often so quiet, a blessing. I will myself to get to my feet and out of the car. I stumble up the ramp and Roland supports me to make sure I don’t fall. I am folded over the vomit bag, waiting for the next flip. He gets the door open for me and picks up the phone- this is the way you enter the ER in a country hospital. “Adult female, not doing so well.”

I sit down on the chair nearby to rest, but I only have to get up again a minute later when the door is opened. The lady tries to hurry me as I struggle to stand but I ignore her; I will get there in my own time. I finally get through the door and am told to lay on the bed. They start asking questions that I cannot answer, the pain is too great and I’m trying not to vomit. Roland starts by listing my medical conditions, allergies, and ends up doing all of the talking for me. Suddenly, I cannot hold it in anymore. My insides heave and I bring the bag over my mouth just in time. An orderly steps in with a fresh bag, I whisper a request for a tissue to wipe my mouth. Roland ends up finding a box for me and placing it near my head- he knows he needs to stay out of the way.

 

The doctor commands me to lie on my back. I am worried about how I will vomit into the bag from my back but I must obey her- She is my saviour, I am her warrior; ready to jump as soon as she demands it. She pulls up my soaked shirt and surveys my bloated stomach quickly before she starts prodding and poking. “Tell me where it hurts,” she says briskly. I shake my head as she begins on the right hand side of my abdomen, once, twice, three times. “No appendicitis,” she barks to the nurse closest, who is making notes. I am thinking, “Of course not, I would have mentioned it if the pain was any different.”

She then starts on the left side, at the top. I shake my head. She moves down and pushes, and I almost scream from the pain. My whole body thrusts into the air against her arms. “Bowel,” she says. The nurse makes a note, and she tries the next spot; its tender that’s for sure, but not agonising. Then she tests the previous spot again- I bite back a scream and will my body to be still on this table they call a bed. My body shudders and a small cry emerges from the back of my throat.

I turn my head to the right and violently wretch into the plastic bag, trying to clear the back of my throat from the dinner I ate 6 hours ago, completely undigested. The orderly makes an attempt to wipe my mouth as he replaces the bag with a fresh one, with no vomit smell, just new, clean plastic.

 

Now that she has established for herself that my condition is the same as it has been every time I’ve been admitted to this hospital, she can get to work- after all, in the past, their plan of attack had been quite successful. I must continue to lie on my back, but all my instincts tell me to curl up in a ball on my side. She straightens my arm as the needle cart is brought over and sets about finding the vein and cleaning the site. I am in too much pain, the words are a blur, but I understand that she is struggling to find the vein. Roland explains that my veins are traumatised from cannulisation, and she tsks to herself. I am not paying attention to her, but the next time I go to vomit she tells me off for not staying perfectly still. I wonder how that would be possible, without choking on the vomit, as she snaps my arm back into place and studies the skin before carefully inserting the needle and plastic. I don’t even feel it. After a little while she names it a success, and sets about securing the site so that I won’t accidentally pull it out.

Now I am finally allowed to lie on my side, this I know. I am relieved, and relief comes with another round of vomit. She tells me to roll over onto my side, I already have. It is much easier to clear the vomit from my mouth from my side. She ponders injection sites, and decides this time it will be my lower back. “Little pinch,” she says, and I feel nothing. I continue to wretch, the same orderly kindly continues to wipe my lips and change the bag. She lines up the next one, “Little pinch.” I feel nothing. She lines up the third injection as a huge swell of nausea overcomes me. I begin to vomit as she sticks in the needle, she forgot to warn me this time. I feel it. She swears at me for moving as I choke out chunks of food and bile into a bag I cannot even hold myself. Can’t she understand that I am trying not to vomit on the bed, in my hair?

Roland is wondering if he can leave now- its around 1am, and he went to sleep hours ago. I had tried to settle the pain and suffer through it on my own but it had continuously worsened until I got desperate enough to wake him. I tell him I am scared, please don’t leave me. “What’s there to be scared about?” The nurse grunts. A lone tear slides across the cheek that is pressed against the pillow, and only the orderly sees it. Roland stays.

Everything begins to blur but I am so exhausted that I don’t even realise. The setting has changed, I’m in a new room, Roland is gone and they are asking me if I can climb onto the ward bed. I do a slow groggy mix between a crawl and a shuffle, and then I am on the bed. Its much wider, much softer. I am so grateful to realise that the pain has seriously lessened, and that I don’t need to throw up right in that moment. My body begins to shiver from the cold, I cannot stop it. A nurse orders some fresh pyjamas for me, and very quickly the other nurse returns with a deep pink winter nightgown. The orderly is turning up the heat in the room for me as I am the only patient in the ward, but respectfully turns and leaves the immediate area when the two nurses begin to strip my clothes.

They gently pull the sleeves over my arms, over my IV. I do not even feel ashamed to be seen naked anymore. My skin is sticky from the sweat, and I am so cold, but the wet shirt is finally off. The nurse on my left asks, “Are you wearing knickers under your pyjama pants?” I want to laugh, but settle for nodding my head. Off come the pants. The dress is straightened around my limp body, and they pull the sheet and thin blanket over me.

The shivering turns into violent shaking, the nurse on my left leaves and returns with two heated blankets from the machine. She places one just under my chin while she sets about tucking in the other, and through the foggy haze of my mind, my whole body craves the warmth. Weak arms try to pull up to the blanket, and my chin drops further to let my cheek and neck rest against the material. The nurse smiles at me, “I thought you might like that.”

My shuddering slows and turns to shivering, which slowly becomes stillness.

 

I am warm. I am safe. I am not in agony. I am grateful.

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Chronic Fatigue Syndrome – The Longest Rainy Day

16 May
“CFS has been classed by the World Health Organisation as a Neurological Disorder since 1982.”

Thirty years on, and it seems to me that no one is any closer to understanding this illness than they ever were. There are still nurses and doctors who don’t know the symptoms, treatments, or will simply call you a hypochondriac. This is NOT all just in my head; I know my mind and body inside and out; unfortunately, I just cannot rely on my body; trust it, like you can yours.

Chronic Fatigue’ really just isn’t a good enough name. So many people hear Chronic Fatigue and enthusiastically say, “I get tired, I have that, too!”
It’s like calling cancer ‘hair falling out’, or referring to a missing limb as ‘something might be wrong with that leg’.

This is still an undeveloped area of medicine, but I have hope that one day, science will triumph, and sufferers will have answers, perhaps even a cure.

Here is what I say to you, the unknowing stranger.
Your worst day, is my BEST day.

♥  ♥  ♥  ♥  ♥  ♥ 

I barely even remember, or am able to pinpoint a specific date that CFS ‘hit’ me. I know that all three of us girls, myself and my two older sisters, got very sick at the same time. We all had blood tests, but Kylie’s was the only one that showed a positive result for Glandular Fever. The doctors say that if you test at the wrong time, you can miss it, so I guess I will never know what happened.
Sam and I recovered, but Kylie never did. I went back to school just in time for year seven camp, Sam went back to work, and Kylie stayed in bed. She saw a lot of doctors. I remember she was diagnosed with CFS. I tried to understand it, but Kylie was a pretty angry teenager and didn’t talk to me unless it was a scream of rage and profanities.

Mum was under a lot of pressure to keep up at work and not miss too many days, while taking care of Kylie and taking her to her appointments.
It was nearly two years later that Kylie came home to stay with us; she’d moved out in that time. She had a terrible virus and was bed ridden for weeks.

She also gave it to me.

Suddenly I couldn’t get out of bed either, I was locked in a cage of fog. Mum would wake me to try to get me to drink water. If I rolled over and woke up, I’ll apply moisturiser to my lips to try to lessen the bleeding cracks. I honestly don’t know how long I was in my bedroom for, I could remember Mum sitting on the end of my bed at home and crying when she thought I was asleep, I don’t remember going to the hospital, I just remember being in the children’s ward, in a private room, and knowing time had passed. No transition. Suddenly Mum came in after work and I could sleep the day away, mostly undisturbed, apart from the obs nurses and the nurses replacing the emptied IV bags.

Blood tests showed I had Glandular Fever.

I know I was there for weeks, I know I watched the whole Hopman Cup series. I know I couldn’t walk to the nurses station and back. I was released the day I managed to walk the length of the corridor of the children’s ward.

                pa·tient  
                     adj. persistent, constant, unwearied in the face of
                           difficulties and hindrances.
                     subone who endures pain and suffers. 

So I came home, expecting things to return to normal. I tried to go back to school- but I couldn’t make it through two classes without going completely white, a talent for someone as naturally pale as me. Mum would pick me up from school, drop me at home and go back to work. I would fall over when I stood or sat up. I hated being a burden, a ‘sick’ child.

We began to see The Doctors. Many of them. Tests here, new medications there; never a break.

Brain scans, whole body scans, colonoscopies, endoscopies, small bowel MRIs, MRIs of my brain, CT scans of my brain.
Countless ultrasounds to try to find the source of the pain.
Internal ultrasounds, give by a long penis shaped tool covered with a condom.
Tubes up my nose, tubes in my privates, countless tubes spewing from the failing veins in my arms.
Three to four hour long sessions in Clinipath with nothing but Oprah and last year’s fashion magazines to keep me company, while liquid the colour of Betadine makes its way into my veins.
Adrenaline shots, for the allergic reaction that is guaranteed to follow. Scratching the itchy rash that it didn’t take away on my hairbrush- its on my arm and I can’t move it much with all the tubes.
Tests on my heart, injecting dyes and young doctors examining the position of the scanner while all I can think about is how exposed I feel.
Walking on treadmills and breathing into huge mouthpieces surely made for giants, and then trying to fall asleep in that getup.
Tests on my brain activity and functions, during the day and overnight, sometimes at home, sometimes in clinics or hospitals.
Tests involving cutting off a quarter of the hair on my head. Exploratory surgeries, with normal results.
Blood pressure monitors, a nice weight to carry around with a trendy fanny pack attached to track the readings.
Tablets in shiny new boxes and bottles, ‘Prescription Use Only’. Drug diets.
Potions brewed with God knows what, presented to me with a huge smile, “I had to work really hard, but I managed to get you on the trial for this!
That’s fine Doc, if you don’t have to taste it.
Night sweats became the norm; having two or three full sets of bedding was the only was I could guarantee I would get through the night.

 keep fighting, gotta keep fighting 

”Yes, I sweat in my sleep, too. It’s gross.” You may say.
It’s not gross. It’s exhausting. Having to get up in the middle of the night because you’ve woken up completely wet and have to strip the whole bed- even the mattress protector. If it wasn’t for the ‘accident’ sheet underneath that, I don’t imagine my mattresses would survive long either.
My clothes weigh at least twice as much as normal. The pillows are wet on both sides, and I’m shivering from the cold.
Goosebumps pop up instantly and my palms begin to burn.
I run to the shower and crank on the hot water tap, shredding my clothes as quickly as I can. Dropping them into the laundry basket and stepping into the steaming spray helps the skin that the water is directly touching, but not my legs; they are blue.
I rinse my already wet hair, wash my face and body quickly, and get out to find yet another full set of clothes to wear.
With a dry towel over my fresh pillow to protect it from my damp hair, I get back into bed and try to fall back asleep.

This has been my routine for the passed nine and a half years.

The debilitating pain. It began in my bowel, and over time has spread to most of my body.
Yet it is still the worst in the bowel. This is where I feel nausea, cramps and a knife stabbing into me all in one.
I used to cry my eyes out when I was home alone. I have spent hours of my day on the toilet, bend over, sometimes with a pillow to hunch over if I’m too exhausted to hold my body upright any longer.
These days, not much has changed. I am usually strong enough to hold myself up, and I also try to hold off from going to the toilet for half an hour at a time.

My legs ache and burn all at once. I feel like I need to shake them, but this doesn’t relieve the pain, only temporarily distracts me and tires my limbs more, and brings a slight, comforting pain of having exercised. Being very warm seems to help a little, so I will often have a hot shower and dress in many layers. This pain tends to come in the evenings, and have been known to keep me awake all night, sobbing. Sometimes I have a day or two without it coming, but it always returns. I cannot find a link with the pain and anything in my diet or lifestyle, only that it is worse when I am tired; life being cruel again, the pain robbing you of the precious sleep you crave.

Headaches, soul wrenching coughs that seem to come all the way from your toes and leave you gasping for oxygen, almost constant nausea. The intense cold, on a hot 35 degree day. The anxiety, cyclic vomiting and ensuing panic attacks, followed by psych consults.
Again, no one understands.
The frustration from people; friends or acquaintances, when you have to cancel plans again; you cannot eat anything on the menu without getting very ill, or have to stop, either to catch your breath or your blood pressure.
Listening to your heart beating all over the place, feeling twinges of pain in your chest and waiting for any other symptoms that might signal that it’s more serious, this time.
The random muscle twitches, especially around your eyes.
The cysts that just keep growing, you just have to keep watching and waiting and hoping they don’t get any bigger, or leak.
I still feel guilty because I can’t get up and out of bed to do normal, everyday tasks.
Going anywhere is an ordeal, doing anything is a battle. I have to psych myself up to go to the chemist to get my meds. Sometimes I can only do one chore a day; I have to chose between laundry, dishes, shopping or cooking a nutritional dinner.
People don’t understand my frustration and emotional reactions when I end up having to give more of myself that I had expected, prepared myself for. But if you had been awake for 3 days, I’m sure you would react the same way; and that’s how my body feels.

This is what CFS is for me.

There were the comments of how lazy I was, so often that I began to believe them;

There was Denial; Realization. Life has changed, and the old me has died and passed on to an uncertain future.

I had to relearn my entire body- my boundaries, my daily battles. I had to relearn the inside of my own head.

Understanding those thoughts and feelings, and trying to turn them into something positive. Because now they are different- I am different.

In a dark time, the eye begins to see.
                                           -Theodore Roethke

Hardcore Party Weekends

15 May

Its funny, I was just thinking about how long I’d been out of hospital recently, and BOOM! I’m back.

There are some fantastic advantages to living in a small town, but as a ‘sickie’ I’ve worked out what is most important to me.

The hospital.

The hospital is wonderful. They might not be set up to perform emergency surgery, but its small, quiet, and the staff learn who you are. In Perth, you can go to the same hospital twice a week and never see the same staff member. Here, as soon as I am brought through the doors, someone will call out, “I know this girl!”

And what an incredible time saver that is.

Just a few sticks- 1, 2, 3, 4. The fourth one she doesn’t warn me about, and I am trying to switch to a new vomit bag. I jump a little from the surprise, and I actually feel that one. Things start to fade, the room goes dark, and the next thing I remember is being asked to crawl over to the bed in the warm. I’m so cold. A nurse brings in another two blankets, heated from the machine, and puts them on me. One is almost touching my chin- I reach to grasp it, soothed by its warmth. She smiles, and says, “I thought you might like that.”

I remember when I first began to get sick. Mum would drive us to Armadale-Kelmscott Hospital, and the triage nurse would look bored and ask her questions, that my Mum would answer because I was too busy vomiting and trying to breathe in gasps in between the bile I was choking out of my mouth. The triage nurse would then ask us to go take a seat, and we would be seen when it was possible.

Back in the day, we used to wait at home to see if the vomiting and diarrhea would eventually pass on its own. Mum would be constantly swapping my spew containers so she could empty and disinfect them. The smell of toilet cleaner will for me, always be a reminder.

Eventually she’d sigh,You’re just getting too dehydrated,’ and I’d feebly pack a bag and climb into the car for the trip.

I remember lying on the floor of the emergency waiting room, because I couldn’t hold my body up from exhaustion. I would lay with my head on the cold lino, my whole body shuddering as I heaved over and over again into a bag.

A nurse comes over,You can’t lay on the floor.

My mum nearly had a fit, “Well, it’s not like you have a bed for her to lay on, obviously.”

When I finally was given a bed, they would spend a long time discussing the best form of action- which medication, how should it be delivered.

Meanwhile, I am in agony, and wish I could just die. It may sound weak, but when you are constantly too-ing and fro-ing from the hospital, when the pain is agonising, when you are just trying to establish a regular sleeping pattern. When you wait 3 hours in the waiting room because there was a car accident, and then another 2 hours waiting for someone to treat you.

You try to not cry, because crying will only make you feel worse, and make it harder to breathe while you are vomiting.

When each time it happens, your first thought is,Well, it was only a matter of time.” That feeling, that you will never escape the pain that defines you.

Listening to the doctors explain that your body is making an attempt to empty itself, preparing for death. Waiting for your body to finally give up, to not be willing to suffer through this anymore.

Four hours into treatment, and your cannula is blocked- the vein has collapsed. Doctor orders a new one immediately, and within the next half an hour, a free nurse will quickly whip out the old and often tender plastic tube, and start looking for a new vein. She calls for another nurse- together, they search for a healthy, pumping vein.

They ask again, “Do you use?
I remember the first time I was asked this, I replied,Use what?” Of course, no ones veins should all have collapsed just from previous cannulas. Time passes and they agree they’d better call the doctor back. Doctor is of course, not pleased. He requests an ultrasound machine be used to find a vein. Nurse asks him if we should do a drug screening.

A handsome young man comes with the ultrasound machine. He snaps on some gloves and makes cheerful conversation while he smears gel all over your arms, hands and even legs, searching with this miracle wand; connected to a machine that can see so much better than the naked human eye. He manages to find a vein hiding away, and uses the magic wand to help guide him in.

Success,” he smiles. I smile back weakly, but wonder how long it will be until I need another done- will this man still be around, working his machine the next time? Of course not. They’ll just keep stabbing and stabbing until they manage to get in somehow.

Mum is brought in and is tired, the only answer she wants to hear is how much better I feel. I manage to convince her to go home and get some rest, have something real to eatI’m fine.

Another four hours later, and just about every other patient in emergency is different from the ones who were there when you entered.

The mothers; resting on the bed, cuddling their young babies to their chest, grateful to have someone to help deal with the body wracking cough.

The 6 year old who hasn’t been to the toilet for 5 days, here with his grandmother.

The lady who had a fall, surrounded by her adult children.

The gentleman who had a stroke, whose wife sat lovingly by him and covered his hand with hers.

And the guy with the severely infected foot injury, one of the others in my lonely club of those with no company.

They have all moved on, either to a ward or home. There haven’t been any emergency codes, everything has run relatively smoothly. Every 20 minutes a nurse checks does your obs, asks you to score your pain out of ten and continues on to the next patient. Unfortunately the pain medication isn’t quite enough to completely block it all out. I frequently stumble to the bathroom if I am strong enough; its much less embarrassing than having a special wheelchair next to your bed fitted with a bedpan, and having the ring the bell for a nurse to empty it each time you go.

You are moved to a ward when you are stable enough. Since you have always been tall for your age, you are put in the adult ward 95% of the time; always in a private room so as not to infect any other patients with this mysterious ailment.

The gastroenterologist comes to see you, you discuss having more tests- but since the last four came back blank, there doesn’t seem much point. Each hospital admission is the same- same symptoms, same slow recovery. Why should the tests show anything different?

Food comes and goes. The portions are huge, even though you ticked the ‘small’ box. So much food is hard to even face, let alone stuff into your body.

Each day I go down to the garden for half an hour. I look at the plants. I watch the people in the cafe, and the people walking the corridors. Eventually I drag myself back to my room; I encountered no one. The most interaction I have had was with the lady who cleaned my bathroom while I did nothing.

Eventually the tea cart stops coming into your room if your mum isn’t there- they know you don’t want a tea or coffee. Days are broken up by seated showers, blocks of terrible television, hospitals meals and trying to stretch my muscles.

Then the day when you are finally released. You must wait all morning for your doctor to do rounds; they love the final stamp of approval. If you need a prescription, you’d better be prepared to wait a few more hours.

You walk out of the hospital midday in your PJs, clutching a childhood toy in your hands and immediately the gaze of two fashionably dressed teenagers having a chat out the front falls onto you. You look at the ground, only glancing high enough to follow your mother’s footsteps, so you can’t see the girls. But they are silent, watching, until you are well passed, and hopefully for you, out of ear shot.

Mum grumbles about the shade having moved from where she parked when she arrived. You slide in the passenger seat of the car, feeling queasy and unsure you should have left.

You know that you could be back by next weekend, to go through it all again. You know that, once again, you will be put in the private room,just in case its actually gastro this time’ and have no one to talk to, no one to listen to or be distracted by. The nurses will be in and out to access the storage cupboards in that single room too, so you’ll learn to become a heavy sleeper.

There is a lady in the ward with me. She is kind, friendly, young and aboriginal. She has a severe chest infection, and she begins the day by cough cough coughing. The nurses run her nebulizer every four hours, even during the night. Her mother has just come in with her baby and her older daughter. Her baby, Lateesha, was born in this hospital.

They do not deliver babies here anymore, but Lateesha arrived in such a hurry that there wasn’t a choice. Even the nurses are excited to see Lateesha, she is the hospital’s ‘baby’ and they enjoy seeing her growing into a healthy bub. I feel left out, for this lovely young lady has her family surrounding her and plenty to talk about.

Roland came in earlier to bring me the laptop, my phone charger and some clean knickers. But he is always with me in the hospitals, always waiting. Last night when we came in, he didn’t leave when he wanted to, because he knew I was scared. He did most of the talking to the doctors and nurses, reminds them off all my allergies, and is able to answer their complicated questions. He runs off numbers, dates and names of medications, and does his best to keep out of the way of the working staff. He doesn’t get grumpy with me, he knows I am suffering enough.

This morning he brings my Ipod too, but forgets the headphones. Boys. He will come back later today with a book, toothbrush and toothpaste and maybe some other goodies, too. He tells me that the girls are missing me, that they aren’t the same as usual, they are distressed. Later when he comes back he tells me that Brandy still hasn’t gone to the toilet. He brings everything I asked, both kinds of soap for the shower, warm long sleeved shirts of his, since all my jumpers and winter pyjamas have been soaked in sweat. He takes away the still-wet clothes I had arrived in, now in a plastic blue ‘patient property’ bag. He also brought pictures of my fur babies. I look through them over and over again.

I wish we lived just 200 metres closer to the hospital, I could probably pick up the wireless from there.
I spent most of my time in the hospital asleep. I am never present when a meal arrives- I am usually woken up by the person who comes to take it away. I drink plenty of water, as I’m positive my cannula has collapsed, and do not want them to try to use it. One of the kitchen staff tells me off for not filling out my menu, and I try to explain to her that I can’t eat any of the foods listed for lunch or dinner- my diet is very specific. When she leaves I have a few tears; I’m so tired, can’t she see that I’m trying? One of my favourite nurses comes in and sees my tears. I believe she told the kitchen staff off, because next time that particular lady came in, she apologized and was very kind. I’m sure she didn’t mean to come across so harsh. Later that day I get a heat pack for my stomach. When I aska nurse to heat it up, I swear she brings it back the same temperature it left at.

  
Another great thing about country hospitals- free TV in the wards! Although I don’t usually use it much, its still nice to have the option and distraction available.
The lady and I chat randomly. They bring dinner while I am in the shower, and when I exit the bathroom she tells me that dinner is terrible, don’t even bother trying the salad. We giggle over each others stories and for a little while, we pretend we are just out, having a hot drink at the local cafe. We spent the weekend learning little bits and pieces of each others lives. She tells me I am brave and beautiful, and I thank her. I truly don’t get told I am brave very often, yet I always feel like I’m losing the war.
 
The morning we were due to leave, we both had blood work done.  This cannot be done on weekends. We are waiting at 11:30 when the doctor finally swings by. He tells me that I should come back if I don’t feel well. I’m ready to leave when a nurse announces she doesn’t have the results for the blood tests yet, nobody can leave. Roland has arrived to collect me, and together we wait 20 minutes. I expect the blood work to show nothing surprising, as usual, but apparently I have an infection. I ask for a copy of the results, to send to my sister, the naturopath. And then finally, after another reminder to come back if needed, I am free.
I see no one going to the car- no teenagers gawking at me in my tights and heavy jumper. We are quickly home, and the girls are going insane. I take them outside after just a minute of pats- and Brandy immediately finally goes to the toilet. She’d been holding on for far too long! When we go back inside I sit down of their bed and enjoy being jumped all over. Roland makes sure the fire is burning nicely before he goes back to work. I sit in front of the flames, wishing the warmth would reach my core. My bones feel cold. But I am home again. I am surrounded by my own things, I can prepare my own edible food.
 
My girls sit one my legs and their body warmth slowly makes its way through my jeans and to my skin. I pet Missy, and Brandy gets jealous and wants some pats too.
Things are normal again. At least for a little while.

We have dreams, too

9 May

Image

This is my life, it’s not what it was before.
All these feelings I’ve shared, and these are my dreams that I’ve never lived before.
These are my words, that I’ve never said before.
I think I’m doing okay.
And this is the smile, that I’ve never shown before.
Somebody shake me ’cause I, I must be sleeping

Now that we’re here it’s so far away, all the struggle we thought was in vain
All the mistakes one life contained; they all finally start to go away
And now that we’re here it’s so far away, and I feel like I can face the day
And I can forgive,
And I’m not ashamed,
To be the person that I am today.

Staind

Image

Last year of primary school. We did a musical Wizard of Oz, I was Dorothy.

It’s hard to remember now but there was a time, before all of this, when life was relatively normal. I had the usual teenage dramas of pimples, feeling like I didn’t fit in and of course, boys. Bad haircuts. Self-given fringes. Time spent looking in the mirror, wishing and hoping. Wondering what I would be when I grew up. Too long spent in the shower shaving my legs. Hours spent giggling on the home phone with friends. Listening to ‘hardcore’ music like Eminem and learning all the songs that had swear words off by heart. Learning new swear words! Hating and loving teachers, but thankfully never too much of either. Feeling like I sucked at Dance compared to all the other girls. Wishing I was thinner, looked better in ridiculously tight clothing. Too much mascara in a shade too dark. Doodling naughty pictures inside textbooks that are returned at the end of the year for the next group of students to come through. Laughing behind the backs of the really foreign teachers who had no idea what to expect from teenagers, and seemingly no idea of how to deal with them. Reading magazines, doing those awful quizzes (Is your crush REALLY your crush?) and smirking at the outrageous questions asked by other readers and pretending to be horrified, while secretly glad that someone else had asked it and you had the answer right in front of you. Hearing about parties on the weekend where everyone got ‘drunk’ and pretended to be idiots, for something to talk about on Monday. Actually getting drunk, and having to hide your hangover from your parents.

 

 

My health began to decline quickly, and I was no longer around for breaks. That was a good thing, to me, because I didn’t have to face my ‘friends’.

I was never really sure of what I wanted to be, it took me a long time to work out that I would never be a famous pop or movie star. I wanted to help those who needed it, whether it be people or animals. I knew I was a compassionate person, and I wanted to be able to use that as a strength. 
Life changed to quickly that I never even realised it had happened. I went from talking on the phone from 5-9pm to those being the only hours I was awake, and still could barely get out of bed. Some doctors would tell me I was so exhausted because I was oversleeping. I remember my mum getting cross and telling them ‘It’s not like I don’t TRY to wake her up. It’s like she’s in a coma.’ Meals went from whatever was going or in the fridge to carefully planned meals that got boring quickly, and were always followed by a bowl filled with pills. I ate steamed vegetables and grilled chicken. Vegemite on toast was out the window, if I was ever up for ‘breakfast’ (this could be anywhere from 10am to 4pm) I would have to have eggs. I can only imagine the strain my mum was under. She had to keep taking time off work to take me to appointments, and in the early days, collect me from school after I couldn’t go on. 
The school tried to accommodate me, they really did. The vice principal was a stern looking lady named Mrs Valencia (like the oranges! my mum would say) who was actually really kind. Whenever my classmates called her names I used to tell them that I thought she was ‘the bomb’. It was with her help and rule bending that I was accepted into Side, Schools of Isolated and Distance Education. Because I had only just started year 9, the law required me to do so many classes and hours a week of studying. Mrs Valencia arranged for me to be able to go and rest in the nurses office whenever I needed to, helped me pick the 2 classes I wanted to keep up the most at school, Drama and Geography, and I began to do the rest at home. When I say began, I did try. But when you are awake for 4 hours a day and struggle to shower by yourself, those 4 hours disappear quickly. I fell behind and avoided calls from my teachers at SIDE. But if you can imagine the whispers you get for leaving class to go lay down instead, it soon became, to me, not an option. I was the girl who was allowed to eat in Geography class, usually carrot sticks, so I could take medication and nutrients at specific times. I was called out to see a teacher who spent all her time working with troubled students, and me, because I needed the help to keep up. She was so kind to me that sometimes I would cry. My drama teacher disliked me greatly and made no attempts to hide it. She gave me D’s through the whole year, but the end grade ended being decided by someone else, who, seeing my body of work, gave me an A. 
Man I hated going to drama with that teacher. If I had to leave class she would sigh loudly and make some form of comment. Drama went from being fun to incredibly stressful.
When my classmates graduated, I was still working on year eleven. I didn’t end up completing the ‘school’ year.  

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Temporarily a ranga. I went to ‘Leavers’, teachers decided to sign me off as a graduate so I could have the experience.

I’ve had part time jobs when I’ve been well enough, but it never lasts because I get sick. After a while the employer gets frustrated, doesn’t understand, and I end up regretting how much effort I put in, how much I wore myself out, for those ungrateful people who had no clue. Today, I volunteer. I’ve always been very open and honest about my health when volunteering. My first RDA centre didn’t really understand though. When we moved, and I moved to another, much closer RDA centre, I was incredibly lucky. They already had an employee, a lesson coach, who’s health would also unexpectedly fail and would need time off.

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Me rockin’ out my Disturbed shirt on Cade. I miss that shirt. Someone stole if off my washing line, I think.

While at RDA Brigadoon I met some wonderful people. The lady who started that centre, and still runs it, was a second mother to me. Once I had a terrible panic attack, I’d been feeling really unwell and I was afraid of going back to the hospital, it all just hit me. They tried to get me to go into the office but I couldn’t get passed the main lounge before I collapsed onto the floor. I was shivering and cold as usual, soft clean ex-hospital blankets that were now used for horses were wrapped around me. Shirley sat behind me while I rocked, wrapped her arms around my chest and began to talk. She told me stories of past happenings at the centre before I’d arrived, good and bad. She talked about her family, my family, sunshine and flowers. I don’t know how long we were there for, but eventually I realised I’d been so busy listening to her speaking in my ear and rocking with me that my breathing had slowed down, the panic had eased.
Shirley was also the only other person with me on the property the day my little Harry passed. Shirley lived on the next property and her 2 little dogs often joined us out there. I usually brought Harry with me because he would fret without me. His death was instant, a hoof to his tiny head. His joy of running around those paddocks is what I love to remember. But Shirley was there, she experienced the horror and sadness and grieved with me. She had to tell me that he was gone. 9 years of being my constant companion, and my little Harry man was gone. I screamed and I cried and I abused God and Jesus. Shirley had to speak to Roland on the phone since I was hysterical. He came down in just PJ bottoms, no shoes or shirt, and he arrived so quickly, he must have done twice the speed limit. Roland stepped up that day, as he always does when it is needed. He was my rock and continued to be for the coming months as I mourned Harry. 
And that employee, would also has health issues? She became my best friend today.

After Harry died, we looked into getting another dog, but soon were informed by our landlords that this was not an option. Unfortunately with the prices of rent in Perth, and Roland seriously concerned about my wellbeing without a day time companion, we had some decisions to make. Roland wasn’t happy in his job either. We had always planned to move to the country later in life, but suddenly it seemed like the best option. We packed up and moved within 2 weeks, 300 kilometres east into the Wheatbelt.

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My beloved Harry man, RIP

Unfortunately for me, this meant leaving my best supporters- my mum, my friends, therapists, and my beloved RDA centre. After we had moved out to Merredin, I didn’t do well. I was in hospital 3 times in 10 weeks, starting with my birthday and ending after the new year. I became very weak because of all the vomiting, and was barely coping to cook one meal a day and shower myself. I became more depressed. One night Roland and I had a big talk, because I obviously wasn’t happy. I needed local friends, I told him. In the end, I posted on the local Facebook page. Ah Facebook, how I love you. I posted that I was searching for horsey people, got quite a few responses, and it became a rolling ball of chained events. I began emailing a local young mother frequently. We would talk about our days, our past, our kids (mine fur and hers people). I was both surprised and happy to have found someone to have things to talk to about. I also found another horsey charity to volunteer with. While not RDA, its brought me different opportunities. Ride for Life is aimed at teaching life skills through horsemanship to young people, teenagers, who are ‘troubled’ for whatever reason. It is run through a church, but is not preachy, and runs during the weekends of 2 months of the year- March and August. The first Saturday in March I picked up a young male teenager and together we headed for the unknown! I had been to a meeting but I still wasn’t really sure what to expect. We started with 4 teens in March, and ended up with 3 ‘graduates’. I met some of the horsier locals through Ride for Life. I’ve been surprised to find that some people in the horse world aren’t very nice. But I guess the same goes with everything. 
I really pushed myself in March. I only missed 2 days out of the 8, and by Friday I still hadn’t recovered from last weekend. By the time March was over, I felt like I needed to sleep for eternity! Thankfully a decision has been made since to make days and weekends shorter for the volunteers, so I will hopefully cope better in August. Though most of it is my fault- I love being involved and I hate to miss anything!

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Having a ride at our local ‘beach’, Baandee Lake, during a Ride for Life session. Blue is being ridden by Josh, and I’m on the massive Abbey

The very best thing to have come out of RfL for me, was Blue. I met Louise, our town’s vet, volunteering. Her children have all grown up and moved away and are having their own children, and she felt Blue wasn’t getting much attention. She offered for me to ride him whenever I like. For me, this is a dream come true. Blue is a wonderful horse,  generally very chilled out and VERY different from the heart-attack horse I’d been caring for in Perth. Ellie had a good heart, but she would jump at a branch snapping in the wind a kilometre away, and didn’t exactly make me feel safe. Especially after Harry’s death, I needed to learn to trust horses again. Blue helped me regain that trust, and the confidence in myself that I CAN ride a horse, and I’m not a sack of potatoes! I remember the first time we rode together, cantering down a dirt path through the bush. The only word I could think of was ‘Liberating’. When we slowed down, I stopped him so I could give him a proper hug, and thanked him over and over again.

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We are so not hardcore.

Blue is a senior, turning 25 years old. I am disabled, and feel like I claim a ‘handicap’ title, like in golf. Together, we might not ride for hours at a breakneck speed, but we enjoy each others company, we have fun, we are a team. Often I am too tired to go for a ride, but even on those days I try to go down to see Blue, to give him a cuddle, a groom, and some carrot sticks. I’ve enjoyed being able to share my happiness with others- my email friend in town has enjoyed his company, and her toddler has ridden him too (with a leader, of course!) I love being able to share the feeling that I get from him with others. I plan to get Roland on him for a ride in the near future!

But I still have bigger dreams. I would love to own a house on just enough land to keep some horses, with a veggie patch and a big yard for the kids to run around in. I would love to have kids! I have yearned to be a mother since my early teens, but I have always known I am not capable of taking care of a child right now, in this condition. 
The scariest part is, I don’t know if I will ever have these things.
Will I ever be well enough to have children?
Will I even be able to have children if I choose to?
How will I ever be able to have enough money for land, when I cannot work, when money is spent on doctors and tests and medicine? 

Seeing properties that I can easily fall in love with breaks my heart into pieces, and I need to remember to stay away from looking at those things. I have hope, but too much hope hurts. Because there is always reality, logic, and the uncertainty of my body’s future.
Then I begin to think about others who dream. Not the most obvious that you would think of, for example not a refugee or a prisoner of war. But perhaps the brain damaged, the paralysed and those born with defects. I’ve never closely known somebody with Down’s Syndrome, for example. As they get older, what do they want? I’ve seen articles about mentally disabled people having relationships, falling in love and even getting married. But do they want more than that? Do they want a home away from any carers, children they can assume will be born healthy, the simpleness of a normal 9 to 5 job? I’d had to assume, those who can understand that concept, would want it. Would badly want to be normal and have normal opportunities. Drive themselves to the shops, not have strangers stare. 
Then there are the physically disabled. There was recently a program on TV called ‘Love Me, Love My Face’ about a guy named Jono Lancaster, who was born with Treacher Collins Syndrome. He has a beautiful girlfriend, and they were exploring their options of having a baby born without Treacher Collins. While Jono is still able to have a job and a relatively ‘normal’ life, he is lucky to have survived his TC as many others born are with worse deformities and do not.

It feels like so many healthy people see disabled people as somewhat less, almost as though we are more primitive. We are no such thing. We came into this world more or less the same way you did. We grew up with dreams and hopes, stories of happiness and granted wishes. But we also know the harsher side of life, in all different shapes and forms. 
I’m grateful for my pension, I truly am. But I will never be able to afford those finer things that I want, my dreams. If I were healthier, I could work hard; I could join a profession based on what I want to do, not what my body is capable of keeping up with. I could have boozy nights at the pub, weekends away and holidays overseas. Travel plans wouldn’t involve the knowledge of how far away the nearest hospital will be, the quickest route there, bags packed with supplies expecting the worst. Only plans of exploring new places, experiencing new things and giggling while we romanced the night away knowing there are other guests, staying in the next room.

So I will try not to hope too much. Too much hope is unhelpful, it only sets you up for a bigger fall. I will remind myself that things take time, that I cannot predict what the future holds for me, what life will be like 10 years from now. After all, 10 years ago, this isn’t what I had seen ahead of me, this wasn’t in my plans. Life is full of surprises, good and bad. Lets all cross our fingers for some good ones, but try not to be too let down when we get the bad instead.

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My good ‘surprises’, Brandy and Missy

Invisible Diseases

7 May

So, what’s actually wrong with you anyway?

  • Chronic Fatigue Syndrome
  • Hypoaldosteronism
  • Cyclic Vomiting Syndrome

Those would be my main three. But that doesn’t really give a list of symptoms; just names of diseases, handed out on a silver platter after months or years of testing, hundreds or thousands or tens of thousands of dollars. And you haven’t even looked into treatment options yet.

All of these diseases are what I call ‘invisible‘.
While I do not in any way undermine the suffering of those with visible diseases, having an invisible one is just as hard, perhaps even more so. You might get the stares from strangers, but you aren’t judged as being ‘just lazy’ or ‘over exaggerating’. This post is mostly going to be about my dealings with Chronic Fatigue Syndrome or CFS, not to be confused with CVS, Cyclic Vomiting Syndrome.

I was diagnosed with CFS just after turning 14. I had had a bout of Glandular Fever in year 7 (2000), and then another in January 2002. At the time I had been told you could only get it once! Imagine my surprise. I remember the first bout being a pain in the bum and feeling pretty crappy, but the second bout was spectacular. I was getting into heavy metal music at the time, I’m pretty sure Disturbed’s ‘The Sickness’ was on repeat for a good week. Quietly, of course. I had a bottle of moisturiser on my bedside table, and every time I woke up I would slather it on my lips, because they were cracked and bleeding. My mum would beg me to drink water, but I would roll over and go back to sleep. I’m ashamed to say I recall her sitting on the end of my bed, crying her heart out. 
Next thing I know, I’m in hospital! I’d never been before, so it was a whole new experience for me. I was in Armadale-Kelmscott Memorial, in a private room on the children’s ward. I was given the children’s menu but was often brought a random ‘normal’ dinner instead, because I was a ‘big girl’ (tall, not large) and didn’t need to eat chicken nuggets. I was too tired to explain that I was too weak to lift a fork or spoon to my mouth, a chicken nugget is all I could try.
I had a nurse who would tell any visitors that I was ‘highly contagious and shouldn’t have visitors’. She scared the pants off of my aunt Shirley, who had come to visit with a bag of mints for me, of all things. I watched the whole series of the Hopman Cup that January, from my hospital bed. I badly needed a shower, and fortunately I had a chair in there. At 13 years old and just beginning to develop into a woman, I certainly didn’t want anyone to see me naked. I had four drips, one in each elbow crease and one in the back of each hand. I cannot remember why I had so many. A nurse had disconnected them for me and left me in the bathroom fully clothed, and walked away. I spent the next 25 minutes pulling an oversized t-shirt over my head.
Twenty-five minutes.
Everything kept getting stuck on the drips, they hadn’t been bandaged and I was afraid they would rip out of my skin. I sat in the shower chair, continuously having to stop to rest my arms. I cried. I considered asking for help, but I was sure the help buttons are for old ladies who had fallen and hurt themselves, and women giving birth on the toilet. Not some youngster trying to get undressed. I was in hospital for three and a half weeks before I was well enough to walk 10 steps. I was discharged 3 days later; as soon as I could manage to walk to length of the hallway.

And so I began my descent into the unknown, confusing and scary medical world.

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Tests, Suicide Bomber style. At least I could take this one home!

Back home, things didn’t improve as much as we had expected. I couldn’t get out of bed. I would crawl to the toilet. I slept 20 hours a day. Within 6 months, I had no friends left. On the outside, I didn’t look sick, I hadn’t lost my hair from cancer treatments, and I always kept a smile on my face to the world. I was bullied and called a faker, lazy, and an attention seeker. Every friend I had, turned their backs on me; began to obviously leave me out of the groups and giggle and look pointedly at me. I cut back on my public schooling (I was doing 2 hours a day 3 day a week) to do Distance Education and eventually dropped out of the system altogether. 

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Due to my Hypoaldosteonism, my blood pressure is WHACK. That’s really the only word for it. It always freaks out the staff of whichever hospital I’m in until they get used to it. I had so many heart tests done- so much green dye and boob flashing at young male student doctors at Hollywood Hospital. I forget what I was in for this time, but those PJ’s look familiar.. 

I saw four doctors each week. ”Just for funzies”, I used to laugh. They ruled out one thing after another, a process for diseases for which there is no specific test or which closely resembles other diseases. My bowel became my enemy. I would spend my waking hours crying. I would whimper down the phone to my great aunt Dawn, one of the few people who cared enough to listen to my pain. I spent most waking hours on the toilet, in agony, and if home alone, screaming my pain at the clean tiled walls. I had no one to share my secrets with, we didn’t have the internet and the words ‘support group’ were never uttered to me. I hide in my pain, wallowed in my misery and hoped that one morning, I wouldn’t wake up.

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Why do they always leave you to take these off? Like you weren’t violated enough already having a room full of people looking at your chest? Poor bloated tummy, pretty sure we ended up having surgery after this to remove a large leaking cyst, which left three scars.
I spent the next 7 years in a haze of depression. I spent countless weeks in different rehabilitation clinics, countless months in hospitals. I have taken thousands of tablets, had hundreds of blood test, so many intravenous drips that the veins on my arms will never truly heal. I’ve had to have ultrasounds to find veins available for a new drip every 8-10 hours because the latest one has collapsed, just like the one before that, and before that, and before that. Once I counted; I stayed in hospital for 4 weeks and had 51 different cannulas.

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Oh yeah baby, break out the red cordial. Gotta love the doctors that give into your pleading/manipulation for something to drink, and spoil you with cordial to help with your blood sugar levels. Also, huge jumpers are highly successful in covering multiple machine attachments.
My stomach and bowel are always in pain, and often agony. I’ve had more colonoscopies and endoscopies than I wish to admit, I’ve had small bowel scans and drank countless litres of gut cleansing laxatives. If you’ve never had tubes up your nose and down your throat, you haven’t felt nothing yet. I cannot handle the nose, the pain drives me nuts.
They’ve never found the problem. If my anxiety gets too bad I begin to vomit every 20 or 30 seconds; I cannot stop, sometimes for weeks. This is the CVS. I cannot even keep a sip of water down. I constantly wretch the nothing I have to throw up until I get so exhausted that I can’t vomit into the bag anymore, and end up just vomiting my stomach lining onto myself and the bed. Once I did a huge liquid crap in my pants while I threw up. I didn’t even know I needed to go. They wouldn’t let me have a shower, because I was ‘too weak’, not even in a chair (obviously) and with the help of Roland, who was happy to assist. Instead they gave me some wet wipes and some hospital undies. I threw out my knickers. I didn’t try to wash them. Like many others thrown out from sudden periods when I was on the pill and couldn’t keep it down. Just what any girl needs, their period when they already are too weak to lift the plastic cup of water to their lips. 
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Blood transfusions following surgery complications leading to severe blood loss and emergency surgery. Of course it was the one day they didn’t do surgeries and had to call in a bunch of people, as well as send everyone already in the waiting room to see the specialist home. Every day for the next 6 months I would think I was bleeding again and have to check. It was a year before I finally stopped doing this. 
Its pretty safe to say, things got out of hand. I was always sleeping, and rarely eating. I was always told to get exercise. Soon I was eating either an apple or a plain scone per day. I had never been overweight, but I lost 10kg in that time and managed to maintain a scarily thin 51kg for my 5’11 frame. My weight was the only thing I could control, and I did it well. During this time I kept my first real journal in the form of an online blog. I belonged to groups dedicated to anorexia and other eating disorders. I worshipped rules, counting calories and getting rid of them. I would even purge if I did accidentally stuff up and eat too much.
Looking back, its easy to see how I got there. I was on all these different medications that didn’t seem to be making a difference, yet I could control the amount of food going into my body and I could make changes that I could see were actually happening. I needed SOMETHING to happen. 
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I didn’t take many photos during this time, but this is one of me looking a bit too skinny. This was a 40 degree day in summer, but I was still cold and wearing a jumper.
I went into Perth Clinic, which deals with many different problems. I was in there for many reasons, but the biggest one was my full hospital cover private health insurance. I was introduced to Perth Clinic by my aunt who also has Hypoaldosteronism. She found it incredibly helpful and her specialist, who I saw for 2 years, worked 100 metres away and would come visit her.
I can’t say I had the best experience there. My depression and anxiety were uncontrollable. I had an older male Asian doctor. Every time I used to leave his office with tears streaming down my face, being told horrible things about myself and confirming all the negative self-beliefs I had within myself. I was under his care for 3 years, and in such a negative head space that I didn’t think I had the right to request a different doctor. I thought that he must be right about me, I must just be useless. One day my partner Roland came with me to see this particular doctor. As we walked back to our car, me crying as usual, he told me, ‘You are never, ever, ever seeing that doctor again.’ To this day I’m still glad I left Perth Clinic. I had some great therapists there, but my personal Psychiatrist was not one of them.
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 Me and A recovering in Perth Clinic… Anorexia for me and Bulimia for her. We got so fat, dyed each others hair, went into the city to get piercings and stayed up late making up the dumbest quizzes which were, of course, totally hilarious. We used to plan to go into the clinic at the same time just so we could hang out- talk about extended slumber parties! I think our longest joint stint was around 2 months.
I get incredible muscle pain that leaves me sobbing into my pillow in the foetal position. There are so many ‘small’ things that always hurt, that I just don’t even notice anymore. Parts that always ache.
Every day is still a battle, but my depression has lifted. I have people I can truly rely on. I may be able to count them all on one hand, but I know that they would drop everything to be there for me. They do not judge me; they listen, offer constructive advice and tell me when I’m being too hard on myself.
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Teaching kids life skills through Horsemanship. I’ve also spent time with Riding for the Disabled Association 
I don’t think I will ever be able to work. I’ve never been able to find an employer who understands my condition. But I will continue to volunteer when I am well enough. Sometimes its admin work. Occasionally I’ve been well enough to help teach people to ride horses. I love horses. Since moving to a small country town, I’ve met the local vet, and she has a horse that gets ignored because her kids have grown up and moved to Perth. But he’s the most wonderful horse, and I’m very lucky to be able to ride him and hang out with him whenever I want. I’m incredibly grateful for the things that I have.
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 Me and ‘My’ boy, Blue
I have 2 beautiful little dogs who make me laugh and smile every day. I have the most wonderful boyfriend I can imagine. He has worked hard to understand all of my illnesses. He knows how they make me feel. He may not fully understand the pain I am in, but he tries his best to make me comfortable and happy. When I have to go to the hospital, he makes sure I have everything I need- most importantly, a charged phone and meds. He has held back my hair while I violently throw up into a bucket and simultaneously squirt liquid out the other end of me, both of which smell like something that died long ago and has been sitting in the sun to rot. He wipes my tears, tells me not to worry and doesn’t rub my back, because he knows I hate that when I’m throwing up. He’ll call my mum at an appropriate hour to let her know what’s going on, but that I’m ok, he’s with me. He’ll come and hang out in the hospital even though he’s bored.
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My incredible man and our fur babies
 When we lived in Perth, I got so sick one weekend I ended up in hospital again. In a hospital nearly an hour away from our house, because we were visiting a friend for the weekend. Likely the reason I ended up in that state. He would get up every morning, take our dog outside to the toilet, get ready for work, drive 25 minutes to my mum’s house so that my dog would have her dog for company, drive an hour from there to work. After work he would drive a long way to the hospital to come and spend time with me before he would pick up Harry, the dog (named after Harry Potter, of course) drive him home and cuddle him then finally going home to crash into bed. I was moved to another hospital after 2 weeks because they couldn’t fix me. This one was only about 40 minutes from our house, but in the other direction from my mum’s house. He kept that up for another 2 weeks before I finally begged to be released. I still felt incredibly ill but I wasn’t vomiting anymore and nothing they were doing was helping. I couldn’t eat any of the food. Why is it that private hospitals seem to have the most inedible food? I think its because they try to make things fancy and they just end up plain shit. 
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My 22nd birthday- so far the only one since 15 that I haven’t been incredibly ill/hospitalized. At the edge of the photo you can see the hand on my back- that’s Roland. The pregnant woman in the pink and grey dress is Manda; one of those I can count on. But my best friend, hands down, is Roland.
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 I may not know what the future holds. I may get depressed about it, I may cope. But I will continue to try to keep a smile on my face. A smile is always so much better than a frown! I just want to be the happiest I can, and enjoy as much of life as I can, doing the things I love. I was once told by an elderly lady in another hospital bed how happy she was to see me ‘walking tall and proud’ after I’d kept the whole ward up with my vomiting act all night. I’ll never forget the time we spent chatting before she was moved to a hospital with more resources.

Nights Like This

4 May

Nights like this remind me why I moved out of home.

I’m currently in Perth, staying with my mum for a few days. My mum is a fantastic lady. She raised 3 daughters without much help from Daddy; help from Daddy always came with snide remarks and carefully worded put downs.

But my mum, when she gets tired, is not at her best. In fact, she can be kinda mean.

Nights like this remind me why I always hid my pain.

Tonight my limbs are in agony. My back is in agony. I curl up into a tight ball as though holding the pain close will ease it some how. I am resisting the urge to vomit, while sharp pains shoot through my stomach and bowels. This is not uncommon for me, but it never makes it any easier. Panadol takes the pain down about half a point. But I’ll take that half a point, and I’ll run with it. I took Valium to help ease away the panic attack, at the thought of being sick and stuck here in Perth, when I plan to go home tomorrow. I have my girls (dogs, furkids; not people kids) here and they would struggle without Roland or I around. If I’m at home, Roland can be at home with the girls.

I was caught tonight- caught showing my pain. My sister, who has ignored me for the most part while I’ve been staying here, tried to sooth me and asked what she could do. I just lay in my ball and cried. I hate to show my pain in front of people. And of course the inevitable happened- my mum discovered I was in pain.

My mum stresses a whole lot. She stresses about my health, my depression, my anxiety. I always downplay dramas to her- an advantage of living 300km away. I can get away with it, and she doesn’t worry so much. I hope. But tonight she saw me in full broken down mode. She was lovely to me, managed to keep it together even though it was already passed her bedtime. She encouraged me to have a hot shower. The shower is going to lead me to talk about my sister, so here goes.

Sam is a weird one. I can’t work her out. I do not have a close relationship with either of my sisters, nor my step siblings. Sam has gained 2 university degrees which ultimately, have not gained her a good job. She also has something wrong with her nasal passages. This is where the shower comes in.
When Sam is in the shower, she likes to clean her blocked (?) nasal passages. It is the sound of a snorting pig crossed with a dying cat. Not that I’ve ever really heard a cat die, only on cartoons and stuff. But its nasty. If you are one of those people who dry retches easily, you will be there instantly. She will do this for 10-15 minutes with no break. She has a shower morning and night.
Consequently, when I went to have my hot, soothing shower, the water instant began flooding. I could only have a quick shower, because by the time I got out the water was almost ready to flood the bathroom.

Needless to say, I used her towel to dry my feet. Nasty nose goo water is how I imagine it. I was looking forward to having such a nice shower while in Perth too, since ours is in a right state.

When I was getting dressed I heard mum ‘have a go’ at Sam. Mum never shouts. But some how the coldness when she’s cross is worse. She’d told Sam to clean the shower plug and was horrified someone had to suffer through the flooded shower of snot. I was glad I was getting dressed and hiding, and not in the line of fire! But that’s just mum tired. She called to me through the door, still sounding cross, so I called back that I was feeling much better.

Its much easier to lie when no one can see your face.
Nights like this, I would love someone to hold me, and rub all of my aching muscles for me, never doubting that they don’t mind doing it, that they would do anything for me.

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I can’t ask that of Roland.

Nights like this have made me a liar.

I’m still in a lot of pain. My wrists ache from typing. My girls are falling asleep, as I should be. Tomorrow afternoon I will be doing the long drive home.

Hopefully tomorrow will be a better day.

The Beginning

1 May

Where does one start with writing a blog? I figured I’d start right at the very beginning. Surely one can only try to understand a life when they know the important details.

This is me. I was born on October 21, 1988. A fat baby born just before midnight, and almost 2 weeks overdue, delivered by a Doctor Love. Seriously. My primary school teacher thought I’d cleverly made it up (What’s clever about that?). I had 2 older sisters, Samantha born in 82 and Kylie in 84.

My mum said she was planning to call me Natalie, but when I was born, I just looked like a Tracey to her. My middle name, Clare, comes from my dad’s grandmother. I’m not sure whether it was his mum or dad’s mum. Once I repeated the Natalie story to my dad, and he laughed and said he didn’t remember. Either way, I was glad. I would hate to be called Nat. “Nat, done your homework?” “Nat, did you pick up the milk?” Ick. Not that I ever really loved Tracey, but I’ve come to accept it. After all, its who I am.

Mum says I was a happy baby. 

I recently found out I was born with a small defect. I had a hole above my anus, at least an inch deep but fully covered in skin. I can only imagine my poor mum cleaning that hole carefully every day so that it didn’t build up with anything nasty, until I was finally a year old and had surgery for it. She told me that she had done the whole day on her own, told my dad not to worry. By the end of the day she was exhausted and in tears. Royal Perth Hospital is shit now, I can only imagine how crappy it was back then.

In hindsight, I think she probably didn’t want him to come because they weren’t getting along. They separated shortly after my first birthday followed by a divorce. I don’t remember them ever being together. My earliest memory involves chicken pox. We all had them, all three girls, but all I really remember is running through a lounge room in my knickers and the vague smell of oatmeal. I must have been at dad’s rental house, because its not a room I recognise.

I guess Dad and Kay dated for a while. Dad was a sports teacher, and Kay was a receptionist at the school he worked at. Kay had 3 children from a previous marraige too. Tara born in 78, Kellie in 80 and Adam in 82. What was with the gaps back then? So many people had one baby, then another 2 years later, then the last one 4 years later. My earliest memory here is of having to go to a football game. Boring! I don’t really follow sports. It was at night, a cool night, I was wearing a jumper. The game was boring and I didn’t understand it, I was only 3 years old. I was told off for entertaining myself with silly games, had to eat a yucky nutella sandwich when I was hungry (I’d never had nutella before) and it had gone warm. Then Kay made me sit on her lap. Finally, everyone started to stamp their feet in a tune to a song, and singing along. I didn’t know the song, but I wanted to join in stamping my feet. This was the most exciting thing that had happened all night!
Kay wouldn’t let me.

I guess the next memory I have is of them getting married. Why do people have long ceremonies when small children are involved? I had to stand still on the end of the line of my sisters and new sisters and step brother, and be still for an hour. I tried to play with my basket of fake flowers, but Kylie kept swatting me on the arm and eventually pinching me. I don’t remember this photo being taken.

 

But I love it, because it shows three little blond girls who are really unsure about what is happening. Sam is trying to smile, Kylie looks disappointed, and I just look plain confused. I’m trying to hide behind my Daddy. Note our horrible dresses and the fake flowers that tangled in my crimped hair.

Childhood breezed passed me like a train while you are sitting in your car, waiting for it to hurry up so you can continue. I learned to ride a bike, skinned my knees, had sleep overs, played barbies, read books and loved school.

 

That’s me in the middle. I did gymnastics, netball, marching, square dancing, music. I could read long before I went to kindy and learned to write. School was easy, I loved to learn and I loved knowing that I understood everything and even more than my peers. I loved sports. I was never a long distance runner, and I was one of the worst at long distance throwing, but I was great at things like long jump, 100 metre sprint and volleyball. I was never the most popular in my class but I had great friends.

 

My ninth birthday. I loved ladybirds. I loved to play in our backyard, no matter the weather. My sister Kylie and my Mum’s mum, my Grandma, are in this picture, as well as my best friends in the world. Stevie, on the left, and Tegan, on the right. Tegan and I grew up with one house between us. Stevie was the most wonderful person I knew, she was incredible fun.

She was the person I chose to confide in. Because by the time this photo was taken, I had been betrayed by people who were supposed to be caring for me. Not person, people. Sexual abuse was something I managed to hide inside myself for a few years, but it couldn’t last. I told Stevie behind her shed about it. She helped me tell her mum. By helped, I mean, she did all the talking because I couldn’t. All I could say was that I had been wearing my new bathers, I’d finally convinced my mum to let me have a 2 piece set and thats what had happened. Ros called my mum. She told me You’re okay. You are safe. She put on a movie, wrapped a blanket around me and told my mum in the kitchen when she arrived. That was the first time I remember seeing my mum cry. I could hear her crying from the kitchen, over the movie. I don’t remember all of it. I remember Stevie’s sister Carly wanted to know what was going on, and Stevie told her I had grazed my knee. Carly was too smart for that, she wanted to see my knee. But she let it go.

I don’t remember having a councellor in primary school, I know that I did but I know I never told them anything. I didn’t want to talk about something I didn’t even understand. No one had ever talked to me about sexual predators. It just wasn’t talked about back then. We had a book, “Where Did I Come From”, but I didn’t understand it. I didn’t relate it to me. I thought you either had babies out of your bum or out of your pee hole. I didn’t know until someone stuck something in my vagina that it was even there. That’s how innocent I was. I still remember the pain. I remember begging for it to stop. I remember scents and images. I remember too much.

My mum still doesn’t know the whole truth. She thinks that one person abused me, and a person that we don’t associate with. What she doesn’t know is that someone else did too, someone in our family. I remember it all too well. I could never tell her the truth. Because a small part of me feels she failed me by not making me know about these things that could happen, so I could protect myself, so I could know I could scream and run for help. And I can only imagine she does too.