At 2am January 1st 2016 I lay in bed crying my heart out with the lights off. My tummy was rumbling a little from the two litres of soda water I had drunk that night as I watched my friends get drunk around me and snack on chips, taking turns on the home waterslide in the backyard. I had enjoyed the music and conversation but the night was not a celebration for me. I hated 2015 and was not in much mood to welcome in a new year as it meant reminiscing about the year that had been. That year had been a black lump in my chest (and a few lumps in my head).  

I usually revise my year at this point. Muse over what happened and what this meant for me. I normally take this time to bring everything together, not just for you, but for me also. It is a healthy reflective practice and it allows me to understand how I have changed as a person and how I think I could use this knowledge in the future. I don’t want to do that this time. I want to talk about my hurt. I want to talk about my losses.

I have almost no memory of the first half of 2015. I don’t know what units I studied at university or anything much at all about them. I recall facts when I go back over my notes and the textbooks, but my ability to bring them to mind myself is so poor as to be near impossible. As well as half a year, my short term memory works in a halting way. I need to bring undivided attention to anything I need to memorise and then need to use memorising tactics to ensure the information is not lost.

When it comes to things I already knew, I cannot easily remember things from my past, nor the names of people. Their faces are familiar to me but if I cannot see them when I learn their name (again) then I cannot put the two together. It is embarrassing to have to ask people their name when I’ve known them for years. It also makes it hard to follow conversations and I can’t even express how upsetting it is to admit repeatedly that ‘no I don’t remember the time that we…’ when someone is telling a story.

There are a lot of things I can’t do that were once easy for me. Focusing my attention on a person during a conversation is hard. My eyes roam all over the place and my hearing comes in and out. I don’t think I will ever be a semi-long-distance cyclist again. That is too dangerous for me. I also won’t be able to do fitness outside, alone or away from a professional who can help me. This means no street running or cycling, no outdoor yoga and no long walks around the city along the rivers and beaches. Don’t forget that I can’t climb ladders or go up the stairs quickly. Probably shouldn’t try walking alone balancing beams.

I am a lot more sensitive to loud music and sounds than I used to be. Smells don’t seem to bother me, nor my sense of taste and touch, but my sight is strange. I cannot describe it yet but when I have figured it out I will.

I am very aware now of my limits. I have finally learned to let down my emotional barriers and allowed people to see me vulnerable. This in turn has left me more sensitive and prone to being defensive when in conversations about self. I once was a very talkative individual, ready to put in an opinion and engage in chatter at a moments notice, yet now I feel the burden of this heavily. I am reluctant to engage and find I need to push the words out. The fact of stringing the words together in my mind, combined with the confidence that they are appropriately relative to the topic being discussed is always on my mind and more often than not my wariness keeps me silent. I prefer to simply walk away or stop listening.

My mind wanders often now. Given my ease at ‘not concentrating’ and ‘not focusing’ I also am fluent in ‘daydreaming’ or just ‘blanking out’, a time in which my mind basically just turns to a whitewash of nothing, not thoughts, no noise, no emotion. I honestly am just sitting as an empty vessel. It is pleasant.

The last impact of the year that was is the physical changes I have been through. I went from 54kg to 63kg. It is not so much the weight gain typically I know but keep in mind I am only 155cm tall (5 foot tall). I don’t look unhealthy, I didn’t before. I am not one for body image and so that isn’t it either. It is not just that my clothes from last Summer, and every Summer before that, don’t fit. It is that the drastic increase in 4 months occurred at a time in which I had absolutely no control  over my life. I was captive to my body and illness. I was mentally, physically and medicinally at the mercy of an almost uncontrollable entity. I have always prided myself on maintaining a certain level of minor physical fitness and ‘healthiness’ with my illnesses, and yet recently it all fell apart and the scales are the proof. I sit here with a round white bulge where there used to be air, I cannot lift or open many household items, nor can I walk far without running out of breath. I am not what I was, physically and it is more prominent still as my sluggish mind is aware of it’s sluggish way of thinking about this.

Now, here I am not whining, complaining or trying to get you to feel bad for me. This is just me factual reflection on how 2015 has impacted on me. You know what I have been through. You know the high and low points. You need to know the above details so you understand the next few posts when I begin to instigate my 2016 intentions. I say intentions because I don’t like resolutions as such, they place too much pressure on me. When we returned from Kuala Lumpur I felt different in my mind. This has settled to a point and only rears itself when I allow a good burst of energy to crop up. I have the potential now, I feel, to be the person I once was before I developed the lesions. I just have to ensure the road to recovery is taken at a manageable pace and is steady and realistic in the way I build it up.

But that is more for another day.


  1. mkingr 03/01/2016 at 3:25 pm

    I hope things look up for you soon. You deserve it. You are such an incredible writer, putting feelings into words. I understand some of what you go through and you have put words to feelings I had no words for. I struggle with that when it comes to Lupus. You will always have a special place in my heart, I know it’s weird but I feel a connection to you and I will always want the best for you. I know there’s no words to make things better. I wish there was something that I could say. 🙁 I’m trying to skateboard (longboard). And I just started target practice with a bb gun. 🙂 Ha ha. I haven’t done a lot of it (skateboarding) yet but just having options for when I’m feeling okay and my feet don’t hurt, then I have something I can do. I just got tired in 2015 of not living anymore. Take care J.

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