This Lupus Life

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

A Lupie Life

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I have been a little overwhelmed recently and not just with the workload I have from my university studies.

Last year I had for units of study in my study semester, I taught 4 yoga classes each week at various private residences and I tutored 2 children privately for schoolwork and homework. This year I have one very simple yoga and well-being class on a casual basis. I am studying 3 units this semester, none of which I have lectures to attend regularly. I have a volunteer tutor position in a reading club at a local primary school and I tutor 2 children privately.

How you feel 97% of the time with an autoimmune illness

So you can see this semester my time is not particularly stretched and my body is not being overworked in stress or exacerbation. Yet I find I have less time or energy to do anything other than the bare necessities each week. The simple reason as to why this is happening is that I am in the early stages of a significant relapse.

Now I realise the average lupus-free person may be wondering about this statement so allow me to elaborate on the details of  my Lupie Life and why these are only the early stages.

Lupus is diagnosed by the Rheumatic indicators in the blood. I’m not quite sure how, though if I wanted to I could very easily know this. Typically more women are diagnosed with Lupus than men, three times more women in fact. Diagnosis occurs most often during the age that is deemed most optimum for child-bearing. It is a genetic disease, that can be traced in a strand of DNA back to a very early point in the evolution of the homo sapien species (it’s just that old).

Lupus is a debilitating systemic chronic disease. Full name Systemic Lupus Erythematosus (SLE). It is systemic because it attacks the body one system at a time. When I say ‘It attacks the body‘ what I mean is the body actually attacks itself. It is chronic in the full capacity of chronic illness in that not only is it persistent and long-lasting, but it is for the length of the life of the sufferers life. It is a disease as it is not contagious nor an injury, it is has somewhat specific symptoms and it affects specific things in specific ways (well… hypothetically at least). If you are wondering about debilitating perhaps re-read and consider this last paragraph again.autoimmune

I liken Lupus to a bean bag. Every illness shows different symptoms in the early stages of the SLE game, though all show the butterfly rash. Each symptom or diagnosis is a bean. When you have had a few and your are at the right age the Rheumatic Factor shows in the blood and confirms it all ties in together (kinda like confirming they are all beans for the same bag).  After a while the result comes together, you have too many beans and it is inevitable they go together and so you have Lupus. As your life continues you will undoubtedly accumulate the remaining beans to fill your bag.

 

Now back to the present and my predicament. A year ago I entered in to a new phase in my life. I was recovering from Erythema Multiforme outbreak and the Costochronidritis was only a new thing to me. My mental health spiraled down but my nutrition was soaring. And then I started to develop growths in my brain and my vision, speech an cognition slowly left me.

So, again, you are wondering what I man when I suggest this is early. How can I know this? Am I psychic? Am I a hypochondriac? Do I have Munchhausen Syndrome?

No. My main systems are yet to be targeted. I must be strong for when that happens.

Flares are typically triggered after contracting a virus. The immune system (already so compromised and incapacitated) just gives up on protecting anything that is not a priority. Once it has spent a while resisting blow after blow things take their toll and the body becomes confused, turning on itself and then the internal coup d’etat or civil war begins.

There is no “if’ there is only ‘when’. The symptoms and progress becomes more uniform as the disease ages, usually to kidney, heart and lungs. My first big flare destroyed my platelets and enhanced Ross River Virus to an unbearable extreme. My second one kept me so close to bed for 2 years that I became socially inept. This last year is a portion, yes only a portion, of another flare. Immune, blood, hormones, brain, bones, spleen and cartilage.

What else will I experience in this flare and how long will it last? What is next in store for this Lupie life?

Autoimmune pain

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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 Lupie Life

  1. Pingback: Recovery: Finding Myself | This Lupus Life

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