This blog began as a way to write my way through neurological illness, and now I am in remission. I keep writing here because blogging has become an important part of processing my thinking on various subjects. I share things here that range from sad to triumphant to curious or rebellious. I like to blog. My writing spans subjects like parenting, pandysautonomia, plus-size modelling, pacifism, politics, pop culture, poetry, philosophy and any other topic that pops into my ‘must write about’ list.
My name is Rachel.
I live in New Zealand. I am in remission from an auto-immune variant of
(diss-auto-no-mia). People refer to conditions in the Dysautonomia family as invisible illnesses because patients often look like healthy people. The part of their brain that controls the autonomic nervous system doesn’t work properly (that’s the part of us that controls all the body’s automatic functions). Although it is hard to tell at first glance, people with Dysautonomia are very unwell; at any given time they may be experiencing dizziness, brain fog, shortness of breath, pupillary dysfunction, temperature dysregulation, digestive insufficiency, bowel and bladder dysfunction, anhidrosis, heart rhythm disruption and labile blood pressure. It is often difficult to move into an upright position and impossible to remain standing. The body of a person with Dysautonomia is constantly trying to find homeostasis. It is exhausting.
A diagnostic direction for me began seven years ago when a cardiologist noticed that my heart was not working properly. In fact, rather than typical syncope, I was having asystole. I got a pacemaker and we all assumed it was just a heart thing. I was diagnosed with a condition called Postural Orthostatic Tachycardia Syndrome, and although I wasn’t a perfect fit for the diagnosis, it seemed the closest explanation to what was going on with me. Until other functions of my ANS started hollering for some medical attention too.
My type* of Dysautonomia (Pandysautonomia), is auto-immune. It follows a relapsing/ remitting pattern like many auto-immune diseases. Originally I was told that my prognosis was progressive and the future was grim. My old neurologist told me to do all the things with my family before the inevitable catastrophic autonomic failure.
I always thought, but isn’t it true that we’re all going to have a catastrophic autonomic failure at the end of our lives?
Exactly how long is that piece of string?
So while that string was unravelling, I began to write. I searched and read widely and joined forums. I learned all I could. I advocated for myself and found a doctor who could help me.
These days I am a lot busier, being a wife, a mum, homestay parent, friend, relief teacher, blogger and plus-size model. I no longer spend the majority of my days propped up in my bed, watching the world outside my window. I am out in it. Trying not to be afraid that relapse will send me backwards again.
I strive to be always mindful of the gift of feeling well. It is crucially important to me that I remember the gifts of understanding that being sick has given me. I work on actively creating the life I want to live. On building memories for my family and hope for my heart. Maybe I can give some hope to your heart, too.
I have two kids; so different from one another but both extraordinary, empathetic, eccentric people. My daughter Bee is 12 and my son Zed is 9. I also mother two teenage homestay students. We’ve had 8 students with us over the years, the 9th and 10th arrive this week. My hubster (also referred to here as the Bobby D, or Bobby Dazzler) is an English-gentleman-Kiwi country-boy hybrid. He is clever, practical and he is kind. I love him.
My world is peppered with the salt of the earth. Special people whom I love. You might meet some of them on here.
I am into books. You’ll meet my faves on here too.
I am into food. It’s a torrid love affair.
I am into being artistic and creative, but I’m often not.
I am into freedom for women, for all people.
I’m into body confidence and diversity, which is why I work as a plus-size model. I feel very strongly that our bodies are extraordinary. Celebrating what they do for us and treasuring the bodies we have is an important part of healthy thinking, no matter what form our bodies take.
I intend my blog to be useful, my archives are full of writings about living with chronic illness, and parenting issues.
I intend my blog to be introspective, I think a lot about things, and those things might make take you on a thought tangent, too.
I intend my blog to be personal. I share from my heart because that kind of authenticity is what I respond to in others. I love having conversations on my blog, so don’t be shy. Join in! I also think that if I am experiencing/ thinking/ feeling something, chances are there are other humans going through something similar. My words are sometimes for others, sometimes for me, sometimes for our world.
Whatever you are going through, I hope you will always find here, empathy.
*Dysautonomia affects different patients in different ways and severity. If you have Dysautonomia, my story won’t be your story. If you know someone with Dysautonomia, ask them how it affects them. It may not be in the exact ways you read about here. For a clear explanation of this condition, please look >here<