This Lupus Life

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

It’s enough to make you lose your hair

Leave a comment

The one thing I have taken to over the years of my illness is my appearance. Now, I feel I need to go back before I go forwards to clarify this statement….

I was raised to consider that ugly and fat were curse words. There is no such thing as a stupid person and retard is the worst thing you can call someone, even if they have a medically diagnosed deficit. In our family we appreciate the beauty in every different person and the things that make them different are to be noted and enjoyed. Even though I am unable to hold a permanent job at the moment with my illness, I still contribute a few hours of each week and a few months of the year to volunteering my time and home to various animal and child health organisations. In all I am trying to say I have been raised to think of others and that vanity, superficiality and selfishness are not desirable qualities.

Fast forward and as I was saying, as I lose more and more of my physical faculties and my cognitive abilities become hazy in parts, I have become more focused on maintaining what remains. Any one that has experienced a debilitating illness will know that utterly helpless and empty loneliness that comes from knowing that of all the things in your life, you have no control over the rate at which your body deteriorates. It cannot be described.

This leads to my current level of vanity. Now my folks are none too pleased that I am so concerned with how I look. My thought is I am young, so this won’t last forever and I don’t have expectations or prejudices to the appearances etc of others. But since I can control my appearance I have become very particular about it.

So why am I rambling and what is the relevance of all this?

SLE has a big side effect/symptom/consequence.

-CUE LOOMING WIND MUSICS (Ba-ba-bahm)

Hair loss.

In the last 18 months I have lost up to 1/3 of my hair. My hair is fine and long and is falling out by the hundreds every few days. I can only wash my hair every 6-7 days and keep it dry and tied up he rest of the time to stop the wastage. It gets embarrassing in winter with the scarves and jumpers seemingly growing their second thickness of ‘Jessie hair’. It gets embarrassing in summer when my hair blows out by the handful at the beach. It gets the most embarrassing whenever I get in to anyone’s car and leave a quarter of myself on their passenger seat. The worst is staying somewhere, like a friends place, and leaving hair all through the spare bed/bedroom/bathroom.

I’ve been asked if I’m on chemotherapy. I’ve been asked if baldness is common in my family. No and No. I’ve spent a lot of time asking all the doctors and doing all the research. I’ve asked friends, people on helplines and pharmacists. I’ve looked in to therapies, treatments, medicines, natural remedies, dietary changes and supplements.

I do not stress about my weight, my skin outbreaks or the longevity of the lesions and long-healing scrapes that I get due to my clumsiness. This is my biggest vanity to date. So there. I have now shared my biggest insecurity with you. Everyday I wash my hair or brush it I am reminded of what I lose and yet another way that Lupus defeats me.

Standard hairloss for my bi-weekly shower in which  I wash my hair

Standard hairloss for my bi-weekly shower in which I wash my hair

Advertisements

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.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s