This Lupus Life

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




#love #silhouette #glow #romance

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Today my heart was broken.

I awoke in spirits and readied the house for my family. The holiday season and all that. I vacuumed and mopped. I emptied the fridge. I made tomato sauce and preservative-free salad dressing and mayonnaise. I had my brother B-Dizzle clean out the bins.

By lunch I was a bit tired but all done, and ready for the family to bring the festive goodies. Of course with this type of effort it was only a brief time before my mind wasn’t focusing and my mood was dipping. I was entering into seizure territory. I sat down to listen to some music until the episode passed. No finger cutting incidents this time!

During my reprieve I was enlightened to my behaviour over the past year and it has so affected me that I just need to say something. I have cried on and off out of disbelief and anger enough regarding this today and I just want to wash it away with my sweat in the shower tonight.

Apparently I have been distant. It seems I have not been communicating effectively with people in messages via the internet and texts. When I am with them, I don’t seem ‘there’ and I don’t talk as much as I used to. I haven’t visited, dropped by, and never make the effort.

Allow me to clarify this to anyone who is under the impression I have decided in 2014 that I do not want to be their friend.

There are blockages in my brain. If any one has spent five minutes talking with me this year will see how hard I have found it to put sentences together. If you have seen me regularly, you will know how often I end up in tears trying to remember your name or how I know you. You will know how it took almost two months of dedicated focus before I felt confident enough to cross the street alone with my headphones on, let alone actually go shopping by myself. When I went to Broome with my mum it was because I could not go anywhere, least of all on a plane to a new town, unaccompanied. I don’t think I can walk anywhere in Summer because I don’t know what the heat will do to me. I have even discussed how bad my eyesight is now, so that I cannot read or make eye contact without the help of a prescription lens. The only way I finished my uni assignments was with the assistance of the education ability assistance groups.

Now I don’t like to rant. I don’t like to accuse people, hold anger and grudges, or enter paces of negativity. I don’t think I am a victim and certainly don’t like to make excuses or take advantage of my ‘circumstances’. I like to think I handle everything well. I certainly don’t push myself to give wehere I won’t get, chase down something that is clearly one way, or try to convince myself there is something there that really isn’t. As I may have said before, a lot of people aren’t prepared to be too closely involved in the depth of an illness such as mine, and that is fine.

But to be accused of deciding to ‘move on’ by one of my best friends. And to see, after I have pushed myself through my brain haze to help her out during one of the biggest years of their life, that the desire to put much effort into helping me out ‘having my back’ so to speak, didn’t seem to this person to be much of a priority at all.

Well. My heart is broken. This year I have tried so hard to stay strong. I have resisted all my fears about losing all likelihood of being able to join my sorely-missed yoga communities, my desire for a simple and carefree social¬†lifestyle and most of all about living without a carer before the age of 30. I have held all of these feelings back since I left hospital last year. I have tried to find and focus on any opportunity that doesn’t involve potential risk or danger to me in my condition. I have tried to think about why I am lucky and how fortunate I am and not let all the stress, anxiety and envy take a hold of me and send me in to a spiral. I have kept repeating to everyone, please just give me time and I will recover as my body allows.

I even like to think I have done okay.

Today I find out that I may be expected to apologise for my uncoordinated, linguistically-challenged silence by the people that I was hoping would be there to support me in my time of need (I think this year has counted as such a ‘time of need’), or at least the blamer not at the other end.

My heart broke. My feelings are low. My outlook is bleak. I wonder just how many people feel I have ‘disrespected’ in this way. I wonder when I can book in for an aura cleanse and massage tomorrow to relieve the tension this news has caused. I wonder how noticeable it is that I’ve spent all day crying.

I won’t let this destroy my festive mood, or take away the happiness from the last few days of the year.

I will stay positive, strong, confident.

I will smile and let this wash off my shoulders like beads of water.

I will apologise for the negativity of this post and realise some may wonder about the appropriateness of it, but I think it’s a good example of how an ill person feel when they are accused of being distance, as I have been.


If you are not, nor have ever, been held at the hands of an ongoing illness, have a think about it.


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.

2 thoughts on “Distance

  1. Thanks, for sharing what’s really goin’ on with you, ChevronSpots, & please keep on keepin’ on . . . it is true that people who haven’t been there don’t understand the confusion, pain, & loneliness that comes with an ongoing illness!

    I suffer from Bipolar II disorder & my family & friends only see me through my behavior or “misbehavior “, & unfortunately they will never truly understand . . I got your back online, by the way, as much you’d like & as much as possible . . .


  2. Pingback: Writer’s Block and Starting from Scratch | This Lupus Life

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