This Lupus Life

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

The Fear

1 Comment

It is hard for me to really do much at the moment. It hurts to think too much about the current state of things. My motivation for continuing my projects, catching up on reading or with friends, all of it is waning. I am not experiencing a bout of depression or anxiety. I can say that with confidence. What I am feeling is a lot more simple than that.

Very plainly, I am in what I consider as the ‘Pre-Diagnosis Limbo’. Some of you may be aware of this stage, but for those that aren’t it goes something like this:

12-8 months ago I lost my vision and awareness briefly. I couldn’t control my movements and for a time I ‘blacked out’. When I ‘came to’ I had been in a car accident (I was driving). It was a fender bender with minimal damage and no damage to anyone.

Following this first episode my vision, body control, cognition and speech all became weaker. There were the masses in my brain. You know this story of course. Following release from hospital and the numerous treatments things were looking to be on the mend. The abrupt fall back into neurological troubles was a clear indication that the issue was not settled, I was not mended and there was something larger than had been previously suspected.

So, you see, I have been troubled with this issue for a year. I feel I have taken it well. It started at the same time as my studies and my entry into a whole new world at university. I have met some incredible, understanding peers and tutors, debuted in to the world of theatre and kept my grade average u around the 75-80% mark all the way through. The awareness that there is something troubling my body has been present in my thoughts most of this time and a realistic way.

I have considered all the possibilities of al the outcomes for all the likely diagnoses that may be delivered my way in the future regarding this ailment. It cannot be said that I’m ignorant to the potential risks approaching me.  Since my seizure I have been numb. I live my life as an outsider, watching more of who and what I should be floating away like a silk scarf caught in the breeze, teasingly dancing out of reach tempting me to chase after and try to pull back.

I have lists of questions to ask my doctors when I see at the end of this month. There are tests that I want them to do. My folks have questions also, which shouldn’t surprise you. There are one and a half months before I see the RPH team. This has been a long time to think about everything, like the current state of my health and my future prospects.

When you experience on-going medical issues, lengthy testing periods and medication trials the overall fears about what may be happening tend to be replaced by patience or irritation. The eventual diagnosis is often met with relief and pleasure of answers, if not the ones you want. Regardless of how you feel whilst you are waiting, it would be a lie to say you aren’t afraid.

People often comment about how strong I am, how positive my attitude is and how admirable it is that I don’t  allow my illness to get the best of me. I put up  great front. I let them see my strength. I smile and tell everyone how well I am managing and how there are positives in my situation because if I they don’t believe it, how can I? I have mantras and preach my way of living as much to them as to remind myself I can still have a good life. I glamorise my pain so there is no pity or guilt in their eyes, and they can’t see the sorrow and helplessness in mine. I won’t have people think differently of me for being born with defective genes, in the same way I won’t date based solely on appearances.

This front is so convincing I find it hard to open myself up, even to my parents. But I will say it. I am scared. I know with Lupus the chances of this thing being a brief affair is unlikely. I also realise the chances of a neurological illness and scar tissue within my brain just mending in the short-term is about as likely as a unicorn ringing my doorbell tomorrow.

The fact is ‘Pre-Diagnosis Limbo’ is a waiting period both dull and full of anxiety where you know the end will be both pleasing and exciting. Dull as you can’t start anything new or do anything that may be causing the issue to flare, anxious as you don’t know what is causing it and how bad it may be. The pleasure is in having an answer whatever that may be and the excitement comes from the new journey you take as you find out all about this new illness, managing it, treating it, and what the consequences of having it may be.

So I am scared. Scared of another thing to add to my list. Scared of a new medication regime. Scared of memorising the layout of yet another doctor’s surgery or hospital. Scared of having a serious neurological condition. Scared of doing it all alone. Scared of putting my brave, positive mask once more as I begin to explain to all my acquaintances yet again what yet another round of tests and treatments have led me to. Scared of learning more medical language.

But if you think about it, I really am fortunate that I have this time off university to catch up on sleep and say in the warmth during he cold parts of this winter. I really am fortunate.

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.

One thought on “The Fear

  1. It is scary, but stay brave. You can get through this.

    Like

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