This Lupus Life

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

Writer’s Block and Starting from Scratch

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Last year (2014) I pushed myself to an extent to become fully immersed in literature. I honestly didn’t think I had the potential to read 30 novels, let alone my final total of over 35. I also didn’t even try to think about how committed I could be to writing regularly here. Luckily, I was able to keep somewhat regular posting habits, and clearly achieved my book reading goals.

Unfortunately as soon as the clock struck midnight and the calendar flipped over to 2015 I have lost all my magical abilities to stay focussed in anything. I haven’t finished the novel I started reading last year so my new challenge is already behind and absolutely no inspiration is coming to me about what to say here.

Gee, I’m sorry. I’m complaining and it’s not a good quality. But I have writers block. Can you relate?

What I thought I would do I start from scratch and ‘show you my process’ for how I recover after an illness. This isn’t a post wasting time I promise. This also won’t be a miracle post answering your problems. Perhaps it may inspire you, or give you a new perspective. I hope it does.

An observer is never going to be aware of the thoughts going through the head of another. When someone is experiencing the pitfalls of an illness the observer is going to be at a loss even more so. If one is lucky the observer is at least trying to put themselves in the shoes of the victim, trying to understand what has been lost and how that may feel. Yet, most of the time even the unwell person may not fully understand how they feel so it’s hard. Even between me and other people with chornic illnesses, even Lupus, the feeling of loss or the actual losses may differ.

I’ve lost a lot. My fitness and ability to run, do yoga, cycle long distances, spend an hour in the sun, catch balls, and swing at them with a stick. I’ve lost, and keep losing it seems, friends and people I trust, people I’ve known for years who seem to understand how I feel and what I’m going through. I’ve lost a lot of my attention span and short term memory, don’t even get me started on all the embarrassing times I’ve been placed in the spotlight and had to admit that I don’t retain  written information well these days or jumble up numbers, dates and times with shameful consequences. I’ve lost my stamina and energy so that any event that runs for more than two hours, or has over three people I know and talk to at it, or is held at night when I have been awake and busy all day has me yawning and sitting quietly in a chair trying to smile and stay awake.

So my recovery is not about learning my Fine Motor Skills on my left side again. It’s not about catching and throwing and making a cup of tea left handed. That kind of recovery is for Strokes and I’ve completed those exercises. My recovery is more social. It’s more of a selective process in which I choose what I have lost and make a concerted effort to create a balance in my lifestyle of exactly what I miss of the specific ‘skill’ and exactly what I am capable of maintaining without driving myself back in to a relapse and five days of bed rest.

When I choose to ‘Recover’ an old ‘Skill’ I normally known which will come next as it will be something that has been in my mind for a while. I will have passed through phases of nostalgia and fond reminiscence and will be almost chafing to get back in to it. Chafing actually is a funny word to use so I will describe the sensation I feel: the desire in my heart will be strong, yet numb as I will have been suppressing the desire knowing it may lead to more trouble. There is a decent amount of fear given the fact that I know if it doesn’t work out I will be saying goodbye to this particular skill for good. So this is what I mean by chafing. Isn’t not quite yearning but it is close.

After I have identified the ‘Skill’ I think about all that it entails and exactly what my capabilities and limits are and why I gave it up before. I decide if I need aids or assistance and the other things I will need to change to make it work. I put money aside, talk to close friends and family for opinions, try to organise safety precautions and ‘escape routes’ or easy ways of achieving things while lessening the burden for myself.

It all sounds so much I know! To be honest though, this whole process may only take ten minutes in my head and another fifteen for talking about with others. At present my ‘Recovery Skill’ is going out dancing with my friends. It may seem petty to some, but I LOVE dancing the night away and going through the process of dressing up with the girls. I won’t say too much, because this is a story for another time.

I will say this final thought. If you are missing something you have given up it is important to talk about it. Share your feelings with someone. These losses, and the sadness and resentment that may build from it, are things that have the potential to interfere with your mental health. If you talk with someone about these losses you may also find someone willing to try adapting your desires and helping you reconnect with something you’ve lost. You may just find you also form stronger connections with the person or people you talk with.

Either way you’re winning!

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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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