Tag Archives: chronic fatigue syndrome

One Year

27 Nov

Its been more than a year since I wrote.

In a year, a lot has changed.

And not for the better.

Last October my relationship of 4.5 years ended.

I moved 300km back to the city to live with my mum, who became my carer again.

I tried to do some volunteer work. They overworked me to the point of collapse, even though they knew I was ill, even though I asked for help. Then informed me I was incompetent and useless.

My best friend of five years was the lead contributor of the insults.

I have spent the last six months, mostly in hospital. My medications have been changed, and changed, and changed again. The pain is agonising. Many times I have thought, ‘I cannot do this any more, I cannot live like this any more’. Screaming. I CANNOT DO THIS ANY MORE

I wake up in the worst pain you could possibly imagine. Its so bad that I want to die, just to make it stop. Mum gives me an injection, another injection. The vomiting slows but the pain is terrible. I try to keep painkillers down, but in the end they are not strong enough. But still we wait, an hour, the slowest hour of your life, just to make sure.

Then we call the ambulance.

They scrape me off the bathroom floor, naked. I am too weak to sit, to dry myself, to move. All I can do it moan. I hold the screams inside, because I know they will worry my mum even more. I am carried to my bedroom, swathed in towels. I am slowly dressed by others. I cannot help. They give me IN Fentanyl. They try to put a drip in, but after four attempts they give up on trying to find a vein. They give me an injection. They are telling me its ok. But its not ok.

They bring in the stretcher, strap me in tight. Wheel me out to the car. School has just finished. Children are talking and laughing as they walk passed the house. An ambulance! How exciting! I wonder if my nosy neighbour has noticed. More Fentanyl. They want to take me to Swan’s, but I need to go to Royal, as that’s where my gastro team is. Royal is ‘ramping’. This means other people in ambulances are still waiting for beds. There is a fire along the way, traffic is blocked. No one lets the ambulance through, even though its the law. Eventually we turn around, and go another way. Every 5 minutes, more Fentanyl.

We arrive and there are seven other stretchers in the room. I know it will be a long wait, but I’m so glad that the paramedics can continue to give me Fentanyl IN until I get taken in.
Sometimes the paramedics will sit with you, and chat. Other times they ignore you, and you are begging them to come back with the drugs. Please, help me.

After two hours, I get a bed. They finally get a cannula in, but they don’t use it.

‘We have to wait for the Chronic Pain Team to decide on your medication.’

The pain team is another ninety minutes. Ninety minutes without Fentanyl. The pain soon becomes unbearable again, I am writhing in pain on the bed. No one can do anything. The pain team arrives, and they give me Paracetamol. Yes. Paracetamol. I have taken Buprenorphine and Tramadol together at home, with no result, and they think paracetamol will solve the problem.

They at least give me another pain patch. My last one ran out five days ago, and I haven’t been well enough to get to the doctors for more. And with that, they tell me I am being discharged. My pain levels are still through the roof. I ask them why I am being discharged.

‘We don’t want you to be dependent on the hospital for help.’

Oh, I’m sorry, here was me, thinking that that’s what you are there for!

Do they really think I want to come in to hospital?

So I get a taxi home. Mum is upset that they released me, but there’s nothing I can do. Four hours later, we have to call another ambulance.

So anyway, that’s currently my life. I don’t go out except to doctors appointments and hospital trips. I am barely able to get out of bed most days. But when I can, I like to make cards for the people who are dear to me. And from now on, since I don’t have anything positive to say about my health, I’m going to be posting my card designs as they are made.

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Sick?

5 May

Its funny how life comes along when you think you are already too sick to do things, and whacks you right on the arse.

“I’m too sick to ride a horse.”
No I’m not. I’m just too aware of the consequences I will face afterwards, and possibly during.

Well perspective ducked his head in and realised I wasn’t living my life to my fullest potential.
I went into the hospital unable to keep hydrated, and I had a head nurse who decided I was not worthy of a doctor’s visit. That would surely be a waste of the doctor’s time, even though they are in the hospital.
She refried my kidneys and put me in a serious, avoidable condition.

And I remembered what being sick really means.

Its not about the days you go around the house slowly, struggling to get a chore done.
Being sick is not being able to clean your own bum, nor crawl to the toilet.
Its being told the plane is on its way to pick you up, take you to a better hospital with more knowledgeable doctors.
Its being told your bowel might have to be removed.

That medication list you just got used to? Scrap it. Here’s a new one, with a bonus 6 new medications!

I will come back from this. I always bounce back, and the bruises usually heal well enough to keep on truckin’.

Appreciate the Beauty

29 Sep

I have a short attention span. I’ll start writing about one thing, and end up on a completely different topic. But maybe, that’s the beauty in writing? Taking you from one place to another, with the fluidity of words.
-T

Hours become days, days become weeks, which become months unto years.

I feel time slipping away from me, grains of grey sand running through an hour glass. The sand used to be pink, with golden flecks that sparkled, but no longer.

‘You are so young!’ I hear them exclaim. ‘You have so much life left to live!’

Is quantity really better than quality?

I daydream about being the busiest person you had ever seen.

~

Energy fills my body, and I bounce out of bed in the mornings, not drenched from the night’s sweat.
I go for a morning run before I even bother with breakfast. People driving to work early see me out the window, and wonder how anyone could be motivated to run when it’s so cold outside. But you see, I know what it is like to barely walk.

I throw breakfast together while singing at the top of my lungs. I am not out of breath, merely from standing, and I don’t even have to take breaks to sit down. Freshly squeezed orange juice from my strong hands, no longer weakened over time.

I eat my breakfast while reading the paper I had picked up on my run. No longer encumbered by 22 tablets to count out and swallow, breakfast takes no time at all. It does not even cross my mind, that I must to wait an hour to make sure that it all stays down.

I go to my wardrobe and pick out clothes that suit my body and the weather. I no longer need to wear a jumper in the middle of summer, my temperature now regulates itself, and enough time has passed that I am beginning to complain about 35 degree days being ‘too hot’, like all the ‘normal’ people.

My day at work goes quickly, for I enjoy the work and am not in pain, nor needing to lay down frequently as I can no longer hold up my head. I chat with my co-workers, trade gossip and giggle over the cute delivery man. My lunch break is so simple- a sandwich and some fruit, still no pills. Maybe I will even go to the shops in my break, just to look at clothes.

When I finish work, I have plans to go out with my girlfriends. I have a quick shower, with no need for a chair. I spend 20 minutes on my hair, as my arms don’t ache when they are lifted. It looks glamourous, and I feel full of confidence, with no need to hide behind a layer of thin hair. I wear heels. I don’t investigate the nearest hospital, find the closest parking, worry about taking my tablets in such a public space- I don’t have to take them at all anymore. I don’t even pack one spew bag.

We have a light dinner, a few drinks, and dance to the crappy local band playing that night. We laugh about passed time shared, who is dating who, and the skanky chick with the camel toe.

At the end of the night, I hop into a taxi with my feet sore from the high heels and all that dancing. I stay at a friend’s house, not worrying about disturbing them with my late night vomiting, stinking up the guest room with the scent of a nights’ sweat, or needing medication I left at home.

Or maybe I’ll even hook up with that cute guy. I won’t worry about him seeing all the puncture marks on my arms, as its been many months since the last time I had a blood test, and the scarred tissue on the veins themselves are even starting to heal. I don’t worry about scaring him away with my wracking coughs and gasps for air, my all day random spouts of vomiting or diarrhea, my sudden need to lie down flat or lose consciousness.

~

Sometimes I wish for new body parts, or a whole new body.
I joke about swapping with my friends, about ‘cutting it out’ (whichever organ is currently affecting me the most) and sometimes, when I’m so ill I require hospitalizing, I cross my fingers and hope I won’t wake up the next day.

I get so tired of being sick, and sick of being tired.

And then something wonderful happens, a friend gets some great news, or the plant I’ve been hoping I wouldn’t kill finally has its very first flower, raindrops on a spiderweb, or someone I haven’t heard from in a long time gets in touch with me and cares.
And I remember, the world can be a beautiful place, if you just look at it the right way.

So take off those darkened sunglasses, take a good look outside on a sunny day.
Can you feel spring in the air?
See the way the plants, and weeds, grow furiously right now, each competing for a patch of dirt.
The sun brightens the whole world up, everything looks so much prettier.
Go to the park, get someone to take you.
Watch a dog playing with his master, a father and daughter feeding the ducks.
Sit on the damp grass, smell the trees, and any flowers you find.
Try to find shapes in the clouds if there are any in the sky.

Laugh, cry, smile, feel.
Appreciate the beauty. Because no one will do it for you.

Hospital Adventures.. 3?

22 Aug

“Get off the floor.”
She demands.

As though Its that simple.

As though I could simply will my body to move at this point.

*

I am fifteen.
My mother had half carried me into the emergency department.

Triage- Blue Seats Only

I stumble to the blue chairs, leaning on anything I can find on my way.

Coke  machine, green chair, stumble green chair, table green chair stumble finally blue chair

I close my eyes and wait, and feel my mum try to take the vomit bag from me.
She still hasn’t learned that I need a new one before she can take the old one.
I cannot be without a bag for even a minute.
People sitting near to me move out of the way,
they do not want to catch what I have, grateful they aren’t dealing with It.

Little do they know, It is not contagious.
It cannot be caught and It cannot be fixed.
It can not be served a restraining order,
nor jailed for breaching said restraining order.
It cannot be gained by worst wishes, It cannot be removed by prayer.
It cannot be removed by scalpels, tweezers, poisons.
It just comes and goes as It pleases, leaving debris in Its wake.

*

The man currently talking to the triage nurse appeared to have a badly swollen ankle.
He speaks very loudly; he is drunk.
“Yeah well see, I, I was just going out for a piss an’ I fell ovvv, over the garden wall.”
He slurs.
The nurse walks from behind the wall to examine his ankle,
removing the makeshift bandage to reveal a scabbed over wound.
“When was this, sir?”
“Oh, that.”
He sniffs the air and then looks at his ankle as though he’s never seen it before.
“Yeah, no, I did that the other week. But now it really hurts, hey.
You need to do something to make it better.”

If I could, I would shake my head.
How dare you take up space in the emergency room at this time of night,
for something you should have had taken care of earlier.
Could have had taken care of earlier.
And now I have to wait for you.

I count to twenty.
I count to twenty in French.
I repeat. I try to think of anything but my body.
But I cannot keep It away.
It rises again and I manage to lift the bag to my mouth with the help of my mum.
I sweat again, I shiver and shake.
I lean all of my weight into the hard plastic seat.
Please just take me away from all of this.

The drunken man is told to go wait along with everyone else in the room.
The nurse spends a further five minutes on paperwork before addressing the three of us.
In that five minutes, my mother and I have remained silent.
Only It had screamed.
It had waved hysterically and shouted in the faces of all those avoiding possible eye contact.
It had splattered the inside of the clean plastic, no longer white and pure.
The nurse looks at us disdainfully, beckoning us to move forward.
My mother lifts me from one seat to another.
She begins by explaining medical conditions, mouthfuls she quickly rolls off her tongue.
She lists medications and dosages.
Name drops doctors and specialists we visit.
She tells the nurse I have been unable to sip water for 14 hours now.
She tells the nurse she’s concerned about my heart rate again.
She tells the nurse I cannot lift my head any more.
She tells the nurse everything.
But the nurse doesn’t even lift her finger toward a pen or the keyboard.
She is not worried.

“What’s your name?”
She is asking It and I. But we cannot speak. We don’t even dare try.
The very last of our energy is being used to sit somewhat upright.
It commands my full attention once again, mother repeats her bag with the routine.
She and the nurse talk, but I cannot hear words,
only buzzing over the sound of my heart beating far too quickly.
The nurse tells us to go wait with the rest of the crowd.
She does not offer any assistance, just watches on.
Mother tells me to count to three, on three sweetie.
She lifts me out of the chair and manages to drag me across the room.
As soon as we sit, she must reach up again to catch It’s latest mess.

And so we wait. I manage to sit for another ten minutes.
Ten minutes of agony, ten minutes of forcing an exhausted body upright.
Finally, I realise I cannot do it any more.
The people around me stare as I slowly slide down to the floor,
rest my head on my right arm,
left arm clutching the bag over my mouth in preparation.
My body rests. We rest together but only for a moment,
before It rises again from Its dark cave, rearing Its ugly head,
throwing Its flames with great force,
demonstrating Its power to all the villagers below.

And that’s when she notices.

She rises from behind her desk at great speed, a woman enraged.

“Get off the floor.”
She demands.
“You cannot be lying on the floor,”
“You cannot be laying on the floor,”
I mentally correct her,
as my mother begins to wage the battle on my behalf.
But still, she only speaks to me, voice getting louder and louder.
“Get OFF the floor. You are not allowed to lie on the floor!”
My mother finally rises from her seat,
putting aside the flannel she had been using the wipe my face dry.
“How dare you yell at my daughter while she is in this condition.
She cannot physically get off the floor. If she could, she would.
Do you think she wants to be laying on your dirty floor? No!
She needs a bed, and she needs medical attention, which is why we are here.”
The nurse stares at my mum, and walks back behind the safety of the door.

Three minutes later, I am in the examination room.
They brought out a wheelchair for me so I didn’t have to ‘walk’.
I do my best to whisper a few answers before the doctor stops asking questions.
He prods and pokes. I vomit and sweat.
He checks my eyes with his torch and I wince from the light.
He listens to my heart and he worries. I vomit and sweat.
He tells me he will be right back.
He is calling out that he needs a bed, “Clear a bed!”
I am lifted onto a bed with wheels. I am wheeled into the Emergency Room.
I see the woman who has been kicked out of her bed, she is sitting in a wheelchair in the isle.
She is having no trouble sitting.
I do not even feel bad.
I only feel relieved. I’m here, I made it here.

It can only get better from here.

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.

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

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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.