This Lupus Life

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

What we want you to know about us

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I’m going to talk about myself today as usual but I am also going to talk about something that happens with all chronic illness patients and so that if you are a family member or loved one you can better understand.

A few days ago I posted that I was basically run down. I suppose a part of that is the chronic fatigue and the chronic feeling of ‘not so good’, but there is definitely more to it that than also. I haven’t said it because I just don’t know how to feel about it honestly and that always scares me. And so  I adopt the ‘if I don’t talk about it then it cannot be real’ attitude and see how that works.

You’ve seen the result. I end up moany and no one knows why.

When  I am in pain the real truth is that you wouldn’t know from when I am not. Nowadays I take my pain pills and continue on. When you feel pain this constantly it becomes part of your character in the way young people tend to overuse the word ‘like’ in conversation’ or you take sugar in tea. It’s that familiar you don’t even need to think about it.

It is so dangerous to be in pain this often, not only because neurologically your brain begins to function differently, but because you unintentionally create a barrier between yourself and the rest of the world.

My parents have always been active outdoors. As I’ve grown up from a child they have aged too and I became used to seeing their bodies stop being able to do things from their youth. I remember the summer dad pulled a hamstring doing a backflip on a single ski behind the boat. We heard about it for weeks and he has never tried one again. Or when mum spent a day in the garden chopping down that really big willow in our front yard. We haven’t have trees since.

Pain. They are reminders of what our body cannot do. They are beacons shining from within but the light is muted and only visible to angels. Angels are few and far between, which means that we are left with hoping everyone becomes mind readers. No one wants to hear each morning over breakfast that waking up caused you the same amount of pain as dad’s backflip on a single ski. And no one wants to be the whinger telling that story. Either way it’s boring.

So we internalise.

With the internalisation comes resentment.

Why do I have to keep reminding you I am in pain? Why do I have to keep telling you I am invisibly disabled and my body hates itself and all my happiness? 

These days I am ‘well adjusted to my situation’. I do not have the resentment mentioned above. I have accepted my fate, limitations and the consequences of these. But this took a long time, a lot of professional help and a lot of long conversations with my family and close friends. It is hard, added on top of dealing with the illness and ‘normal life’. It was only my interest in writing and personal career and life goals that led to this development.

So if you know someone that is unwell and they don’t communicate this to you, it isn’t their fault. They aren’t trying to sabotage your relationship or shift the blame to you. They just aren’t there yet. It can be frightening to accept these terms and admit you need that much help, that your are that weak. 

Perhaps it is because I am coming off some strong medications this week that this is more prominent in my mind, but the truth is it also never really leaves it.

I hope you understand, it never truly will leave it.

This is what we want you to know about us.








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.

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