Four years ago I was a young outgoing person, making my way up the corporate ladder as a business manager. Life was amazing! Our plans were to buy a house and one day have a family.
That was before I was dealing with a debilitating incurable condition called Gastroparesis.
This disease means that my digestion tract is paralysed for no reason. I can no longer process food from my esophagus to my bowel. I can no longer eat the foods I once loved and I can no longer drink my favourite drinks.
I am 34 and I can only eat via a tube that is attached to my face 24 hours a day, seven days a week, 365 days a year. For the rest of my life, I will be kept alive by a nasogastric tube.
Prior to being diagnosed, I was seeing doctor after doctor after doctor, surgeons, specialists, trying to find out what was wrong. I lost count around doctor number 20.
They all told me to go home, not worry, try to relax and that all my symptoms would go away. Symptoms of chronic vomiting, nausea, severe abdominal pain, rapid heart rate, dizziness, major headaches, depression and severe weight loss. I couldn’t “just relax” and it did not “just go away”. I was worried, and being told “not to worry” was unacceptable.
So many Australians live with chronic illness and chronic pain. Article continues after this video.
I did my research every day, trying to find a possible solution. I requested test after test. When I found a possible condition, I asked my specialist to run the specific test. Within two weeks it was found my intestines and stomach were strangling my heart and had split my diaphragm. I required an urgent five hour surgery. If left undiagnosed it would have starved my stomach and intestines of blood, possibly leading to losing vital organs or losing my life.
In 2015, I underwent an additional two operations, due to complications with this previous surgery. It was at this time, more than ever, that I felt the blow of Gastroparesis. The digestive tract is controlled by the vagus nerve, and my vagus nerve was severely damaged. It is no longer viable at all.
This condition is incurable, one in 200,000 people are affected worldwide. It will last for my entire lifetime.
Socially, I hardly leave the house because this tube brings a lot of stares from the public. I have no confidence to face the world but I am slowly making changes in this part of my life. My husband and family are a great support network.
The stares and comments are difficult to handle. My husband Brendan and twin sister Rachel accompany me to the shops like a safety blanket. Often Brendan will do the shopping and everything to run the household while Rachel will take me to late night Kmart runs, when no one is at the shops.
Brendan is amazing. He is there running me showers at 3am when I'm vomiting, when I can't get out of bed. He sets up my feeds at night and gets my hot water bottle ready every night to put on my tummy to try soothe the pain. He never complains, he never thinks of giving up on me, Brendan fights with me, he fights for me and he empowers me with his positivity.
Brendan is my rock, my hero, my soul mate.
My family check on me every day, they support me in every way possible, they raise my spirits on dark days. They make me laugh if I'm crying inside, they wrap me up in cotton wool when I've given up and have lost hope. They are my strength, my courage and my will to fight, I'm here because of them, not because I have to be but because I want to be.
Gastroparesis has taken so much from me, this tube and machine is the only thing stopping my organs from shutting down. My kidneys are not working how they should as I am malnourished, I'm losing my hair, eyebrows and eyelashes. I am nauseous 24/7 and spend 90% of my days vomiting. My body rejects most of the food, and the food that it stores, sits in my stomach rotting, causing constant food poisoning and vomiting that can last for weeks.
Given that I am attached to this life-saving machine 100% of the day, I have had to leave work. The ladder to business manager has lost its rungs. So how do we make ends meet when I am unable to work? It's not easy.
I have been rejected for my claim for the disability support pension. It has been a rough few years relying on alternate welfare payments. In addition to the lack of recognition within the welfare system, medication for Gastroparesis in NSW is not part of the Pharmaceutical Benefits Scheme (PBS). In all other states in Australia, medication and lifesaving feeds for Gastroparesis suffers is part of the PBS, why is NSW different?
I need help. I'm begging for someone to help me raise awareness for this condition. This needs to be recognised in the community. The government needs to start taking this seriously.
The NSW Government needs to change its policy and make lifesaving feeds and medical supplies part of the PBS for Gastroparesis sufferers.
I am not asking for a hand out, I am not crowd-funding, I am doing this for all current and future suffers. When we have medication on PBS, and when Gastroparesis is part of the Disability Support Pension assessment process, funds will be put back into the pockets of the sufferers. That benefits all the people affected by Gastroparesis.
Images by Nina Photography.
To sign Charmain's petition to change the landscape for all Gastroparesis patients, visit her website lifewithgastroparesis.weebly.com.