This Lupus Life

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

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The experiences that I have gone through in the last month have been so over and under whelming that I honestly started to lose sight of the my big picture, as well as confidence in myself and my ability to survive and keep moving forward. Now we know I enjoy having a good plan to follow on, a way to direct my life in the short and long term. I made a really good, detailed plan of how to get started for the next month, and then the next 6 months and so on.

Of course like any sensible person with minor control issues when my plan started to go pear shaped and become delayed by general life events, well I started to unravel. I have not been good at coping with obstacles in life that are completely unexpected, unless it is related to my own health. Especially since I weaned off my medications and so now am functioning solo. So when I had 3 weeks where I was home bound I felt all the new confidence I had built up in January as well as the new vitality was seeping out of me to a more active and inspired person.

That’s not to say I was completely inactive there. I was trying to find a mentor to allow me to view them in class. I was canvassing friends and family to would let me teach them for an hour pro-bono to build up my skills. I was dedicating my free time to help the people close to me work through their own life dilemmas. I completed 4 units for my Cert 3. I was approaching schools to inquire about doing some more observation in their classrooms of the EA’s at work. Not to mention all the healthy eating. It all felt to me like I was going no where and achieving nothing and wasting my time though. I didn’t feel good.

The more I gave of myself to others, I started to feel nothing was coming back to me. Not that I expected to be rewarded for it. I just found that very few people were willing to acknowledge the help they received. I had an instance where I went to a friends to clean up before a party and was accosted in a variety of ways about my choice to eat healthy and be active. Another time I was asked to visit for lunch, and asked to supply the food at my own cost and then told to leave before we’d eaten. A lot of little comments about how I should do things better, but none about how I did things right.

Given how sensitive I am to the words people say to me I lost my want to help. I forgot I was active and positive and just wanted to spend all my time watching TV and reading books and I even started to eat some not so great meals, which is worse than everything else combined for me.

Then things started to change. I was talking openly about how I felt with my people, mum, Walrus, Courdy and The Kid. All of a sudden, out of nowhere, they had organised a series of classes, pracs, dinners and just kept calling me to see how everything was going. To be honest I had forgotten, as one does when there are such heavy feelings involved, that they were all there just keeping me up. I think sometimes you need to withdraw in to yourself to check how you are going. But it is also as important to keep your head in the game and be alert to full so that you can remember there are people to help if you’ll let them.

I cannot for sure say that I am on top of things now. I still struggle with the endless hours of inactivity. I do think though, that as long as my people keep reminding me of my plan, and my focus and how they are ready to catch me, I should be able to make it through. Currently I have 4 classes a week, and this is a darn good start!

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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.

One thought on “Support

  1. Pingback: What is love? | Nitya Nata

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