Monthly Archives: July 2016

Circus Show Day 208

Show Day

It is now 10 months since my initial diagnosis of kidney failure.  Time has flown.

Today I took some time out to reflect on my earlier blog posts and this one in particular (Circus Show Day 5)  struck a chord with me.    I had only been in hospital for five days and we were still running lots of tests to determine my full diagnosis.

A lot has changed in the 10 months since I wrote the blog below, but I still remember how I felt like it was yesterday.  I remember how scared I was.  I remember the constant knot in my stomach.  I remember the pain in my arm.  I remember the look of fear on everyone’s face around me.

 

CIRCUS SHOW DAY 5

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: 

  • Having friends around me is going to get me through this – they are so special
  • Pee can actually froth – who knew?
  • Nurses and doctors focus on treating the physical and not the mental –  I need to look out for my own mental health through this process

Circus Show Day 206

Show Day

It’s been a roller coaster past few weeks.  With my unexpected stay in hospital throwing me back on the tightrope of life.  This latest visit to the white palace of illness has scared me.  It has reminded me that I can’t lose focus.  It has reminded me that life is fragile and I need to stay diligent if I want to keep living it.

Yesterday I was scheduled for my third surgery in 9 months.  But it was cancelled.  I must admit I was relieved as I dread the now all too familiar surgery process.  But my relief has been short lived as I arrived home tonight to another window letter confirming my surgery next Tuesday.

Seven more sleeps.

 

Circus Show Day 205

Show Day

My most recent stay in hospital has really knocked me around and I have found it quite challenging to bounce back.  I am not sure why.  My body feels a bit broken.  It is on the mend but I am feeling more like an 80 year old than a 40 year old.  It is frustrating.

Circus Show Day 204

Introduction

Four more sleeps and back I go to the scary sterile white building of illness and pain.

Four more sleeps and my fashion outfit will be a green backless gown and white stockings.

Four more sleeps and I’ll be sedated so that I don’t feel the scalpel cutting through my skin into my veins.

Four more sleeps and I’ll put my trust in a masked stranger to fix my lifeline.

Tonight I cant sleep.

Circus Show Day 203

Show Day

I use to get nervous when I received a window envelope in the mail as it usually meant that a bill had arrived.  But these days I dread the opening of mail as it usually means a hospital visit or some type of procedure involving needles.  And today was no exception.

I have survived another long stay in hospital and I’ve been getting back on my feet.  Today was actually a good day with me managing nearly a full day in the office.  But tonight I opened a window envelope and there it was in black and white.  My next surgery.  I knew it was going to happen, I just didn’t know when.  But now I do.

Circus Show Day 201

Show Day

It’s been a tough couple of weeks.  My roller coaster has been racing.  My head has been spinning and I haven’t known which way was up.  But as I’ve done before I will find my grip.  I will open my eyes.

Another stay in hospital was not expected.  But I’ve now realised that I don’t know what’s around the corner with this disease.  I’ve come to expect the unexpected.  I’m getting use to the lack of answers and the uncertainty.

But this time I want to be more proactive with my mental health.  I want to try and distract myself.  I’m thinking classes.  Painting.  Singing.  Cooking.  Writing.  Dancing.  Sculpting.

What else can I do?