This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

A gift from me on my birthday

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Today I turn 27 years old. I was born on 12th August 1988. I am a Leo. I was born in the year of the dragon. According to many strains of spirituality my numbers, days, dates and letters suggest that I am a vehemently passionate, loyal, aggressive, deeply loving and strongly willed individual. I know all of this. But it has occurred to me more and more in recent times that I do not actually share much about myself with you.

A 2014 christmas gift from Mamy, One ring to rule them all, one ring to find them.

A 2014 christmas gift from Mamy, One ring to rule them all, one ring to find them.

Now, yes I tell you about my health. You know how my body works. You kind of know the people that are most strongly involved in my life, and some of my more focused interests. So this you know. You’ve had a vague recap of my history and in some ways you know what makes me tick.

But I would like you to know a bit more about me and my life. So I have been determining for a long time on what information is okay for me to share without jeopardising anyone’s privacy, creating false or misleading impressions about my life or to create an unnecessary division between us. These may not seem important to you, but they are to me.

I was baptised by the Uniting church as a babe. My family is not wholly religious or spiritual, however we were all immersed sufficiently in the practices of the church so that we understood the process, the devotion and the faiths present in society. My eldest brother is vaguely agnostic at this point in time. My youngest brother is strongly atheist and does not entertain any perceptions regarding the likeliness of a higher being existing. I have faith. I believe the need for a faith in something greater than oneself is a foundational driving force in many human beings. It is not always present, and this is an allusion to the clarification of Abraham Maslow’s Hierarchy of Needs. My faith is intrinsic, in that I do not feel driven or attracted to any one particular practice or ideology of faith. I feel they all have merit, yet my attention is internalised largely to a higher belief or, and faith in, myself.

This aforementioned positioning of my faith leads to a very basic fact that I am in many ways largely contrary in nature to some of the deeper concerns regarding my health. I am frank regarding my mental health troubles. I have depression and at present it is on the more severe side. My depression, by nature is not harmful or destructive. I have no desire to inflict pain or injury to myself or others. I certainly have not felt the yearning to ‘move along’. There has been no significant event which has caused this health issue to arise. My earlier mention about my intrinsic faith is a startling fact for one very simple reason which contradicts my mental health: I have very good self-concept, self-esteem and self-awareness. I know in no negative terms where my skills are strong or weak, I have never felt pressures about my body image and even with a sickly body, I honestly believe my life has been more fulfilling and enjoyable than many of the people I meet of the same age. I (think/guess/ presume) I am a pleasant person, with a generous and genuine compassionate disposition, I do not seem to be too low academically and I can hold a conversation with most people with ease. My financial situation is what can be expected for my current life choice/ situation.

My current life choice/ situation is my very most personal part to share. I am in a mutually respectful and caring relationship. I have spoken briefly about Gallowe. He is the elder brother of a friend of my elder brother. We both attended the same boarding colleges but never simultaneously. He is athletic and active (unlike me), he argues with me on political and current events (which I need), he knows when to subtly step aside and always makes me feel safe. I have been open since the first date about my health, but as you can expect, there are teething situations as he gradually experiences first hand what I have been going through for the past decade. I am learning and he is and we are making it work. I had grown to feel that I was jaded from my health and seeing so many friends turn from me. I honestly had begun to think that a relationship as fulfilling and carefree as what I see of others wasn’t a possibility for me. He just doesn’t care. He is okay with whatever happens to me, as long as I’m still there. It will take time, but I have never felt as completely able to let down my guards before. It is a strange and new experience to be unwell and not isolated or independent from absolutely everyone. To know that I have more than just my parents to depend on in my late twenty’s makes me feel like I may turn thirty like everyone else, a possibility that had never seemed achievable to me before.

Gallowe and myself on date night a few weeks back

Gallowe and myself on date night a few weeks back

Finally, I live in Perth.

I love Fremantle.

I read because I think escapism is the key to removing the heaviness of chronic illness isolation. It also allows us to experience other opinions without pressure.

My favourite show is House M.D. but I love Hannibal by BBC and all of Doctor Who. I prefer TV shows to films.

I am addicted to coffee.

My favourite food is Indian but I also love Thai. I cook a lot of South-East Asian cuisine.

My favourite flower is the Arum Lily, NOT the Calley Lily. But I also love Carnations, Gerberas, Daisies and Orchids.

I have three tattoos, a ladybird on my hip, a cat riding a pennyfarthing on my back and the zodiac symbol for Leo on my ankle. If I ever have a brain biopsy I will have a purple wolf tattooed on my scalp.

And did you know I will live to be over 100 years old?

Home. Where the body can #rest, the mind can be #calm and the #heart is happiest. There is nothing more to say.

A post shared by Jessie Frost (@thislupuslife) on

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Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

One thought on “A gift from me on my birthday

  1. Pingback: Clarity | This Lupus Life

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