The Basics

Hey hey 🙂 I am 20 21 years old and live on the Gold Coast in Queensland, Australia. I work as a Teacher Aide at a secondary school and work on the executive committee of two one not-for-profit organisations. I am, slowly but surely, studying to be a secondary school teacher (english, history, legal studies). I love my jobs. Ugh so much. I have a beautiful, beautiful supportive family who surround me in my apartment on my parents’ property. I have a beyond beautiful, supportive boyfriend. Aside from a few dear friends, nothing much else matters to me. ❤

My aim with this blog is primarily selfish. I hate talking about my conditions without being asked (but I will happily answer any question you have and then some), because I hate sounding self-indulgent or like I love the attention gained. But sometimes, I just wish people knew things. A byproduct of not speaking up about an invisible illness is inevitably having people think you’re lazy, that you take the disabled parking spot at work for no good reason, that you’re a shit friend for bailing on social activities all the time. My hope is that those who care will have a little peek on this and understand just that bit more, about both myself and others who may be silently fighting their own fight with chronic illness.

My Conditions:

• Dysautonomia
  • Postural Orthostatic Tachycardia Syndrome (POTS)
  • Irritable Bowl Syndrome (IBS)
• Myofascial Pain Syndrome
• Patent Foramen Ovale (PFO – hole in the heart)
• Food allergies and intolerance
  • Cows and goats milk protein allergy
  • Egg white allergy
  • Caffeine and alcohol intolerance
  • Banana/cranberry/mushroom/pineapple allergy
• Anxiety
• Endometriosis
• Vitamin D, B and Zinc malabsorbsion
• Iron deficiency

As a result of those conditions, these are the symptoms that I experience regularly (the underlined are the ones that I feel constitute everyday limitations, or disability):

• Chronic fatigue
• Orthostatic Intolerance
  • Dizziness/near syncope upon standing up/sitting up
  • Inability to stand/walk for prolonged periods
  • Poor circulation/blood pooling in extremities
  • Inability to tolerate heat, especially humidity, and cold #goldilocks
  • Prone to syncope (fainting) generally
• Cognitive impairment
  • Brain “fog”
  • Inability to read/comprehend dense information
  • Poor working memory
  • Poor gross motor skills
  • Poor concentration
• Anxiety
• Muscle pain/soreness/stiffness – sometimes debilitating
• Exercise intolerance
• Muscle weakness
• Low blood pressure (can be 80/50)
• Gastrointestinal/Digestive Issues
  • Chronic nausea
  • Unable to digest big portions/certain foods
  • Can’t stand or walk and digest at the same time
  • Constipation
  • Reflux
• Shortness of breath
• Chest tightness
• Sensitivity to light
• Chest pain
• Headaches
• Sleep disorder

Medication:

• Coralan – 5mg twice daily <– DEATH BAD MEDICINE TRIED TO KILL ME
• Metoprolol, 25mg twice daily
• Florinef – 0.1 mg once per day (something to do with fluid absorption)
• Logynon – once per day (The Pill) Mirena IUD
• Probiotics
• Supplements
  • Magnesium
  • Iron
  • Vitamin D (high dose due to malabsorbtion- 5000 IDU per day)
  • Calcium
  • Lycine
  • Vitamin B (injections)

This is a list that I hate to include, but just for some perspective for those who may want to understand the impact on every day life, these are some simple pleasures, other than the obvious being able to walk and run etc. that I can’t enjoy (either at all or without paying a hefty price. To be fair, I often choose to do that… It’s all about finding a balance that allows you to function but not die of depression because you can’t do so many things.)

• Wear heels
• Eat chocolate
• Drink coffee
• Clean the house
• Have sex
• Play sport
• Take baths
• Drink alcohol
• Pig out on large portions
• Walk on the beach
• Stand during ceremonies/similar events
• Take the stairs
• Give speeches or sing standing up
• Eat and then walk (my body doesn’t know how to digest and send blood to my brain at the same time)
• Visit theme parks
• Go shopping
• Cook