Saturday, 14 April 2012

But you don't look sick on Facebook!

  • Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me.
  • Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too.

Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the pain. It is exhausting and exasperating. You will not understand the hardships of it, having pain is the worst thing a person can go through, but to have chronic pain is horrible, it slowly eats away at your life, you no longer are happy, you become miserable, it takes every ounce of strength our of you and leaves you in shattered pieces.

Sometimes people find it hard to understand me because some days I can get out and do things and others I am bed bound in tears. I have to rely on medication to even be able to get out of bed and function, although sometimes thats not strong enough to make me function. 

I've had chronic pain for 5 years now, which has meant COUNTLESS surgeries and trips to the hospital. I have been to pretty much every hospital in Melbourne so can tell you which ones I like and dislike! Every since I injured myself in mid 2007 (year 9) I've had about half the year off each year during year 9,10, 11 & 12 of high school, which has meant having to get work sent into the hospital for me to complete. I even did my year 12 practice exams while in hospital! Fun I know!

Over the years I've had 5 spinal blocks, 3 6day ketamine infusions, 2 failed spinal cord stimulator trials, one arthroscope, 2 5day epidurals, 2 sets of botox injections (60 injections each time one after the other with NO numbing while sitting on the table fully awake), 7 weeks in a hyperbaric oxygen chamber and over 40 different pain medications.

All the time I have people say hurtful things to me such as "Oh my your so lucky you got to have ketamine in hospital I'm so jealous" - Yes I am so lucky that while on ketamine I threw up countless times, got so drugged out I couldn't walk or feed myself. I just don't understand how I can be "lucky" for getting the medications I have because I do through hell and back everyday and the drugs AREN'T fun! Yes the ones I am on now keep me functioning and yes I take morphine daily, but its certainly not for fun! It's only so I can get out of bed! So please do NOT call me lucky!

Having chronic pain takes a toll, being so tired you just need to lay down, having to take your medication at the same time everyday no matter where you are or what you are doing. Not being able to walk long distances unless you want to be in bed for the next week crying.
The type of chronic pain I have is called Complex Regional Pain Syndrome (CRPS) also known as the most painful type of pain on the Mcgill Pain scale at 42! Childbirth without drugs is 30! Just to put it in perspective.

The main pain I feel every minute of every day is - deep burning pain (feels like my leg is on fire), bone pain (just generally a really deep aching pain, and like someone is drilling into my bones), stabbing pain (feeling like someone is piercing into my skin with a knife over and over), throbbing pain (aching pain like being hit with a hammer).

This is what I feel through and go through everyday! While still trying to remain hopeful that one day I will find something to relieve my pain as I have had almost every treatment recognised for CRPS! There is only one treatment left that is too drastic and would has massive side effects and limitations on me e.g not being able to have kids!

So this is my story at 19 years old!

Ciao, MelbourneFashionDiary xxx


  1. This is such a brave post of you to write, I'm not really sure what to say but I am glad you have brought attention to the disorder and that you are a truly inspirational girl and I admire you for getting out of bed each day and having such a positive attitude xx

  2. Thankyou darling! I appreciate your kind words so very much! You are a gorgeous girl! xx