.

Sorry, this is a long post so you can feel free to just scroll past. I wrote this on the app since the web page hates my devices, so there is no Read More cut.

Time to open up to my followers.

If you’ve known me for a while, you’d know my battles over the last few years. For the new folks, here it is - I have been living with a chronic illness since November 1, 2014, and it has been awful.

It started out as just chronic nausea. We thought it might’ve been something I ate or a lingering case of gastro. But, that changed February the next year when the pain started.

I woke up one morning to find I was in extreme pain in my feet. I hadn’t injured myself but my feet felt like the bones had been shattered. The lightest touch made the pain even worse, so I was just lying on my back, feet in the air, crying and crying, trying not to scream and wishing it would just go away. The pain faded over the next couple of weeks, but never left completely. It was just an annoyance or painful but not excruciating. My grandfather offered for me to see a podiatrist, he would pay if not bulk-billed, because he thought maybe it was from the many years of walking on my toes.

The next day, right before my cousin’s birthday party, which I had planned on attending for at least an hour just to say hello to the family, the same horrible pains started in my hands. Dad just had to take one look at me to know I would not be going. I asked him, through my tears, in half-seriousness if he could find his axe and chop my hands off so I never had to feel that pain again.

I found a clinic to attend with my grandfather’s help. I saw a doctor about my symptoms. She focused on the nausea, even if I kept saying “I’m in worse pain today!”, so I tried seeing a different doctor in the clinic. The first doctor had ordered a gastroscopy to be done to see if there was something going on in my stomach.

The second doctor kept ordering the same blood tests - iron, b12, vitamin d. And even once those levels had been corrected, I was still sick and sore. I had since had my gastroscopy, which came up clear. The second doctor looked me in the eye and said outright that she believed I had to be faking in order to get out of looking for work. I was already upset that the gastroscopy had no answers (I’d already said I would cry if it came up clear, just as I would’ve if it found a tumour developing in my stomach), but then to hear that from someone who was meant to help?! I broke down crying and told her if everything I had missed in the time I had been sick. By this time, it was early 2016.

I told her of missing visiting my niece as a newborn. Of how I couldn’t attend my cousin’s engagement, Hen’s night and wedding. Of how I couldn’t attend my pop’s funeral. Or the missed annual dinners with Nan and Pop before his passing. (Pop is my dad’s stepfather and was a big part of my life growing up despite living far away.) How I had planned a holiday to the Gold Coast for my 30th birthday but instead spent that day in bed, struggling to down my food and avoiding the family as they ate theirs because the smell made my nausea worse. Of the Christmases I spent sick in bed and unable to visit my mother’s grave. Of not being able to hang out with my sister and spend time with my young nephew and much younger niece. I refused to see that doctor again and left feeling terrible.

New doctor at a clinic my great-uncle visited. He decided to do the usual blood test but also tested to see if I was autoimmune. Yep, so he then tested to see if I had lupus. Nope. But, he still seemed to be doing more for me than the last two doctors. A week after the autoimmune result came in, I wound up in hospital. I hadn’t been able to eat or drink for a week because I was having difficulty swallowing. I wasn’t in a dangerous condition, so I was only admitted overnight for observation, having some fluids by IV and to speak with a speech therapist the next morning as I was put on a purée diet. While being observed, the doctor in hospital noticed something - a goitre.

Eating troubles started becoming more frequent at that time. By the end of 2016, I was struggling with abdominal pains and low appetite. There were sporadic days I couldn’t eat a thing. I attended another appointment where the doctor forced me to have two jelly babies because my blood sugar was low - no, I’m not diabetic. They came to a head in late-March of 2017.

I hadn’t eaten more than a nibble here and there and only barely sipped at a drink for a week. I was very unwell and after the third time of being sick, I decided I had to go up to the emergency department because something was very wrong. I was right - they saw me right away. I was in the early stages of Refeeding Syndrome due to starvation, my blood sugar was low, my ketones had gone up and my organs were slowly starting to shut down. My blood was acidic. I was told to try sipping at apple juice, but it was no good, I couldn’t even muster that.

I was moved to short stay while waiting to transfer to a ward. My time in hospital was scary, and not in the usual “I’m afraid of hospitals” way. I was in danger. I was diagnosed with starvation ketoacidosis (similar to diabetic but I’m not diabetic), as anorexic (no appetite version, not anorexia nervosa) and even if they tried to get me to eat, I struggled even with crackers. They put me on Ondansetron (usually for chemo and radiotherapy patients) to ensure anything I did try to eat would stay down. I was put on different infusions - saline, glucose, potassium (THAT HURT SO MUCH, I THOUGHT SOMEONE WAS TRYING TO SNAP MY ARM IN HALF AND I ACTUALLY PASSED OUT FROM THE PAIN!!) and others. I had blood tests at least twice a day and tests for my blood sugar and ketones every time I was about to eat or if I looked a bit more unwell. I had to be hooked up to a portable heart monitor, but the first night of that, my heart rate reached 150bpm just slowly walking to the toilet, and a Med Call was made to make sure I did not go into cardiac arrest. The doctor who made his rounds had to outright tell me that if I failed to eat, I would need to be put on a feeding tube or else I would die. That’s how bad it was. I was in for a week before I was deemed well enough and safe enough to go home.

The third doctor started to let me down, ordering the same blood tests to make it look like he knew what might be going on. No good. Wound up feeling too ill later in the year so I missed my uncle’s funeral.

In 2018, I started going downhill. Wound up hospitalised with starvation ketoacidosis again following a bout of gastro the day before. Falls also started occurring. But, it was no good, I couldn’t find a good doctor who could help instead of just playing around with the same old blood tests. I missed more events including my other niece’s first birthday and my great-uncle’s funeral.

2019, still struggling. I’m seeing a new doctor, but she very quickly lets me down by saying EVERYTHING is just tied to my anxiety. At least she took the lump in my breast seriously - thankfully not cancer. But, as the year progresses, a good doctor is finally found. My cousin helped me find a clinic that bulk-bills and is taking on patients.

My current GP listens every time I see her. Every. Time. I go in with a new symptom or concern, she orders the right tests or refers me to someone who can help. Through her help, I’ve been able to see a speech therapist about the ongoing swallowing issues, a physiotherapist about my falls, a dietician about my dietary issues which contribute to deficiencies, a surgeon about my goitre (he put me on medicine because my thyroid was a bit overactive - suspecting hyperthyroidism or any other forms of it - in the most recent blood test through the hospital when I went up by ambulance with chest pains, ordered a CT scan and believes the best course of action may be to perform a complete thyroidectomy, meaning removal of my thyroid), had me undergo full blood tests (not just the usual), had me undergo an ECG and TTE (trans-thoracic echo, an ultrasound of the heart) just to make sure all is well there since I keep having chest pains and most recently referred me to a neurologist because she believes my symptoms line up with a rare genetic condition. She’s also looking into finding a neuropsychologist who can help with an autism assessment.

Because of the help I’ve been receiving, I’ve been a bit more hopeful of a diagnosis finally coming in the near future. Because I’ve been seeing a physio who helped me with strengthening exercises for my legs, I have been able to go out walking for a little while - never out on the streets but yes in shopping centres, that way if something goes wrong, someone is nearby to get help.

I still feel nauseous (still on Ondansetron for that). I’m still in pain every second of every day. I still feel that weakness. But, I’m starting to have those okay moments where I can go shopping or play with my niece and nephew - both occurred over the last couple of days, a water fight two nights ago where I just stood there shooting a water pistol at them as they ran around me, and an hour out shopping with my niece. Yes, those hit hard the next day and up through the next week. I do not intend to push myself so hard I’m at risk of hospitalisation. But, I also need to work at rebuilding my stamina. My father and grandfather have special birthdays next year and I want to be able to attend the dinner organised...even if I can’t eat while there, as long as I��m there is what matters.

But, for now, it’s baby steps. Sitting up and watching a movie. Washing some dishes. Carefully playing with the kids. Try to keep the shopping trips short. Eat what is possible, not what is a must.