Dear Kidneys
There are times when I want to claw through my skin and rip you out of my body with my bare hands. I then imagine throwing you down on the ground, stomping on you repeatedly and finally flushing you down the toilet.
Other times I want to beg for your forgiveness. Forgiveness for not listening to your cries for help from within. I want to apologise over and over for not recognising the signs that you were hurt and slowly dying.
Today I want to flush.
Love Fee
BIG TENT ATTRACTION: Yellow Maze
I’m lost. Every turn I take is a dead end. I can’t climb over and I can’t crawl under. I could try and push through but I am fearful that the thorns and prickly leaves would shred my already bruised skin.
I don’t like this.
Who likes being lost? In a maze? Alone?
Nobody can show me the way out. Nobody is here. I want out. Please let me out. Can I go back to the start? I’ll try harder. I promise to train harder. I promise to be a better performer. Please let me go back to the start. Please let me try again.
I don’t want to play anymore.
Right. Left. Left. Right again. Left.
I see an exit. I see two exits. Which one do I take? Do I go right? Or do I go left?
Choose right and I get to put on a new costume consisting of a permanent tube in my stomach. This tube forms part of my new act. In this new act I pour two litres of magic liquid down the thin tube. The magic liquid cleans my insides and is then drained out again. It would take me 45 minutes to perform this act and come rain, hail or sunshine I’d be expected to perform three times a day, everyday.
Choose left and my new costume is a tube in my arm or neck. My new act involves being hooked up to a machine in a hospital three times a week.
Left or right? Right or left?
Both exits mean new costumes and drop me down a rabbit hole. A rabbit hole without cake and tea parties. My rabbit hole is yellow and smells like disinfectant and vegetable soup. My rabbit hole opens on Tuesday.
Left or right?
BIG TENT ATTRACTION: Chocolate On A Stick
Chocolate on a stick! And not just any chocolate. Freddo Frogs, Mars bars and even an Aero bar were all given a stick to stand on and strategically placed in a box. Robin you are a genius!
Thankyou Robin for thinking of me and the creative box of treats. It will be enjoyed and contribute towards my five a day.
You have also helped in reminding me of the joy of simple pleasures. Like eating ice-cream for breakfast, the sound of the ocean and the smell of my Mum’s lasagna.
Simple pleasures how could I have forgotten you?
Not all acts need fanfare. Not all acts need the big tent, colourful costumes and the beating of a circus drum. Simple pleasures you bring such joy into a complex world. Simple pleasures you are my life-long friend. You don’t know goodbyes. You don’t know tears of broken forever. Simple pleasures we are in this together, for the long haul. New acts come and go, but you are here to stay.
Today I received a box full of chocolates on sticks.
Today was a good day.
BIG TENT ATTRACTION: Pyjama Parade
Don’t cry in the shower with shampoo in your hair – rinse first….
Am I being impatient? Are my expectations unrealistic?
Where are you? Where are you when I need you?
Its too quiet. The silence is deafening. Come one, come all! It’s a new show, we have new acts, it’s a new shade of yellow.
Am I being impatient? Will it take time for the new shade of yellow to be recognised as different? Will it take time for my new ordinary to form?
My skin feels baggy, tired and old. It has lost its shape and no longer hugs me like a glove. Just like when I wash a cheap t-shirt for the first time. It never comes out the same way it went in. The neck stretches and the bottom hem line becomes wonky. It is changed forever. It has gone from Saturday afternoon drinking in the sun to a pyjama top.
Am I destined to be a pyjama top?
I saw a patient in hospital last week, with only one leg. He had a tattoo on his calf that read: “One foot in the grave”
BIG TENT ATTRACTION: The Great Escape
Goodbye peach walls and smell that makes my nose itch
Goodbye daily blood tests
Goodbye happy tea ladies and Joe
Goodbye plastic covered pillows
Goodbye my night nurse friend – I’ll miss our late night chats
Goodbye 5am blood pressure observations
Goodbye pea soup – I mean really pea soup???
Goodbye wearing pyjamas in public – this I will miss
Goodbye tube in my arm
Goodbye room 1128
Goodbye St.Michael’s Ward
Hello outside world. Hello real world.
I’m pleased to meet you. My name is Fee, I’m new here.
That’s it, game over, we lost the race against time. It is official my kidneys won’t bounce back. They are not going to make a great come back. They are not going to be the main attraction at the circus, they are not going to be the death defying act that draws crowds from all over the globe.
They are dead.
I am sad, I am devastated.
All hope has gone.
I have been trying to mentally prepare myself for this. I have been telling people that I would need dialysis and a transplant, but the truth was I was still holding onto hope that my kidneys would kick start themselves back to life. That they would start working again and I could be me again, I could just go back to my life, I could go back to work, I could be normal. Now I am stuck in this circus. Stuck on the merry-go-round of hospitals, needles, surgery and dialysis. I don’t like the merry-go-round. I want to get off, I want to go home and never come back to the circus! I hate clowns.
There is no why. There is no definite disease. Is it something that I have done? Could I have lived differently? Should I have gone to the doctors earlier – HELP ME
There is no help. There is no knight in shining armour that can sweep me off my feet and take me to a far off land and live happily ever after. My life is now a circus.
I am scared, scared of what is to come, scared of my new life, I am scared of clowns who paint on fake faces. Who am I now? Who will I be? Fee is gone, who is this new person in her place? What act does she do in the circus? Can she act? Is she strong? Is she weak? Can she deal with this pain and hurt that now engulfs her.
It hurts, it hurts so deep down it is like a low growl in the pit of my stomach. The growl is waiting to explode into a roar. A roar of pure pain and emotion.
I’m tired. I’m exhausted. I have no fight left in me. I gave it everything I had. I followed instructions. I took the pills, I learnt the circus tricks. I joined the circus. But they wanted more. The crowds wanted more. Now they have all gone home. The tent is empty, it is quiet. It is sad and lonely in the big tent.
I need to now learn new tricks. I need to pick up my sore battered body and change costumes. I need to become a new act. It is going to take time to be able to move from the bottom of the ring to the trapeze. To fly again – will I ever fly again?
BIG TENT ATTRACTION: Kidney Biopsy
Why does everything in this place have to involve a needle? It is the tool of choice for nurses and doctors, just like my tool of choice as a consultant was a flip chart and whiteboard markers. They are everywhere including in the process of getting a kidney biopsy!
So after all the drugs, scans, blood tests and ultra sounds it was time for the big one – the kidney biopsy, and yes of course it involved needles (plural!!). My doctor clearly explained the steps of the biopsy:
I love gaining knowledge and learning new things, however I would have been very happy to never have been introduced to the joy of a kidney biopsy. Knowing what is involved in a kidney biopsy made me more nervous than my Mum’s tooth pulling method. When I was a kid my Mum would get a piece of string and tie one end of it to my loose tooth and the other end would be tied to the nearest door knob. On the count of three she would slam the door and my baby tooth would be yanked out of my mouth and go scattering across the floor. Was it traumatic? Absolutely! However I must give it to her for being effective , my Mum had 100% strike rate.
Today I would rather be tooth pulling than sticking needles through my back. My imagination pictures a needle the size of a small tree trunk going through my spine and coming out the other side through my stomach. In my imaginary biopsy the needle is being stabbed through with force, like a stake to a vampire.
I am starting to think I really need to do something about my imagination if I am going to survive this yellow circus without having a nervous breakdown.
I am however proud to announce that I survived the needle biopsy. I am now nursing a sore back where the rather small needle (it wasn’t anything like a tree stump) was inserted. Woohoo another medical accomplishment can be added to my list. It is also however another medical experience that I hope I never have to go through again. It definitely rates as the scariest and most painful yellow circus experience yet.
I have been diagnosed with kidney failure. This basically means that my kidneys aren’t doing what they are meant to do and we can’t fix it.
The partner of a close friend of mine had a similar experience and he told me that he kept a journal. He said it helped him at the time to express his feelings and thoughts of what he was going through. Now years on, his journal has also helped him to reflect on how he felt through his journey and how different it is to where he is today.
I loved the idea and this blog is my journal of my kidney failure adventure – which I call my Yellow Circus.
BIG TENT ATTRACTION: Mental Health Day
I have now been in this circus for five days! In these five days I have been poked, prodded, bent in every direction and I feel like a human pin cushion peeing machine. Yes peeing machine. All everyone talks about is pee (urine). How many times have I peed? What colour was the pee? How much did I pee? Was it easy to pee? Was it frothy? FROTHY?? What does that even mean? Does it mean my pee was was overflowing out of the toilet and running out the door?
No, my pee does not froth like a dog with rabies. I think it is rather normal pee and I am tired of talking about it. Just like I am tired of giving blood. How much blood can one person give? Can I actually run out of blood and have nothing but air running through my veins? And the problem with giving blood every 5 minutes is that it involves a needle being shoved into my arm and lucky me, I have a needle PHOBIA. The type of phobia that makes me shake, cry and basically imagine pain that doesn’t exist!
So to summarise how I feel today I am overwhelmed. I am overwhelmed that five days ago I was at work wishing everyone a Happy Friday and now I am living in a hospital room with peach walls and a smell that makes my nose itch. I don’t want to be here, I don’t want to have kidneys that don’t work and I especially don’t want to see another needle hanging out of my arm or talk about my pee.
Today I decided was a mental health day!!
I cancelled my biopsy, all of my tests and I refused to engage with anyone talking about my pee. I gave myself the day off from being a sick person – today I was not sick. I am me Fee, an ordinary person who was forced to join the yellow circus.
Hmmm I think they are all thinking that I am mental. The look on the poor nurses faces when I refused to give blood, when I screamed that I need a mental health day, when I screamed that I am a human being with physical and mental needs – that I am not a PIN CUSHION! I think I actually saw fear in one of the nurses eyes. Or maybe that was pity for the crazy women losing her mind in front of her. There could be a real possibility that the ward nurse is now scrambling to fill out the transfer papers to send me to the psych ward. Well actually I am feeling a bit crazy today, so maybe that would be a nice break – maybe they don’t have needles in the psych ward.
I am trying my best not to feel guilty or embarrassed by my mental health day. I feel much better now that I have vented and expressed my feelings. I also feel better as I had a day full of visitors. I have had lots of friends visit me today and even my boss. Wow I can’t believe how much that has helped me, I feel energised from their visits and most of all I feel loved and not alone. Thank you my friends, words can not express the gratitude I have for you taking time out of your busy lives to come and see me – I love you all!! And in particular one friend, you know who you are, you are my lifeline and I couldn’t get through this without you.
Overall I think my mental health day had to happen and I think I am turning a corner.
TRICKS I LEARNT ON SHOW DAY 5: