This Lupus Life

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

An Almost Illness

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The overwhelming sensation that there just aren’t enough hours in the day is not something I experience. Mainly because I refuse to acknowledge  stress. My best job reference has always been “She doesn’t get her work done at a fast rate, but it is done on time and at 200%.”  Personally, I cannot see any flaws in that. I certainly don’t let stress get to me.

I am coming up to the end of my university semester. Of the last 14 weeks I have:

  • Spent 1.5 days in the Neurology clinic at Royal Perth Hospital
  • Re-awakened my talents and desires for singing
  • Had Migraines for 4 weeks
  • Been in bed sick for 1.5 weeks
  • Been at home but mobile sick for 1 week
  • Visited my folks once
  • Regained my speech and sight
  • Had 2 colds

I am very pleased to note that the new medication I am on has cleared the migraines and improved my concentration. The trouble at the moment is simply that I am at the end of the semester and and entering 2 solid weeks of performing, as well as 2 solid weeks of exam preparation and my exams.

Now I want to make it clear that I do not feel stressed, although I know this doesn’t mean much to my body. I am taking care of my health and wellbeing. Why am I saying this, you may be wondering. Well very simply I appear to be experiencing an ‘almost illness’.

What is an ‘almost illness’? Firstly, as a sufferer of SLE (Lupus) I get sick different to ordinary folk. Where an illness for someone else is asthma, skin lesions, clotting, or cartilage inflammation, to me these are symptoms. Mere hiccups along the way.

A symptom of an illness is a sign of something bigger. A tumor may be a symptom of cancer. A pus is a symptom of infection.  Bleeding is a symptom of a cut.

You get the picture.

My stroke episodes were symptoms of blocked brain vessels, which is a symptom of SLE. Migraines are a symptom of a sensitive nervous system, which is a symptom of SLE. Colds are a symptom of a weak immune system, which is a symptom of autoimmune diseases, which is SLE.

Surely you get the picture now.

What I’m trying to tell you, what I want you to now and understand, is that nothing just happens to me. Yes, everyone gets the cold. Yes, it’ not surprising I get it too. But I do get it harder and more often than others. It lingers longer and takes a bigger toll on me. I’m special.

Back to my almost illness.

In the last month I have had 4 episodes. I get out of bed in the morning, feed Polly and start dressing for the day. Not long after I am ready my legs tingle. Then itch. All over. It is excruciating. I can barely think straight. There is no rash, no broken skin. No reason at all for this to happen.

Different clothes, different temperatures, different times of the day. The washing powder hasn’t changed and it was sensitive mix anyway due to eczema in the family. Shaved legs or hairy, jeans or tights or skirts. Showers in oils and lotions. Creams and powders and sprays and nothing. The only thing that kind of helps is a pile of codeine and strong skin specific antihistamines. I cannot get in to the doctors at the time of irritation, but it wouldn’t help anyway as there is nothing to see. I will go regardless, there is not much more I can take and since it happened in the middle of last night I am at my limit.

So. You see. Not quite an illness, but frequent enough that it needs to be looked in to. My almost illness.

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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 “An Almost Illness

  1. Pingback: What can I do? | Nitya Nata

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