How I Survive Lupus (AKA My 12 Step Programme)

April 7th, 2011 by Jules Leave a reply »

Earlier this week, I was asked by one of my twitter followers (@robtclements) how do I cope with my lupus and the things it does to me. I tried my best to answer him via Twitter, but that isn’t always the best medium. I thought it would be a good idea to write about it great detail. If you are a long time reader of my blog, this will not be new information. However, I realise there are a lot of new people to this part of my world and, in cases such as these, it isn’t a bad idea to repeat it; not only to serve as a reminder to others, but also myself.

There are a few things that I do to get through it:

  1. If something is bothering me on an emotion level (fear, doubt, anger, frustration, etc.), I name it. Naming it allows my brain to make it tangible. It allows me face it head on. I believe you can’t fight something that you cannot, or are unwilling to name.
  2. I do not internalise by feelings. I get them out in the open, either through telling one person or blogging. For me, this is very necessary step in moving onto my plan of action to win whatever battle I am facing. Also, internalising it is never a good idea. I use to do that, isolating myself in the process and causing depression to set in. Some times (read a lot of the time) this is scary because I face rejection and all of my abandonment issues rear its ugly head. However, despite my fear of rejection, I open up about them because:
  3. There is no shame in admitting to fear, anger, despair, grief, frustration, doubt, etc. Admitting to it, especially openly, take a huge amount of courage. It means you are willing to stand up face whatever it is, even if you are shaking in your trousers while doing so.
  4. I remind myself that raging openly about the fear, anger, despair, grief, frustration and doubt means that I am still alive and am fighting. The day I stop being angry, afraid, grieving, frustrated, doubtful means that I’ve given up and am probably extremely depressed.
  5. If I fall down, metaphorically and literally, I pick myself up and try again. I do this as many times as necessary, each time going through steps 1 -4.
  6. I try my best to focus on all the positive things that are currently going on (no matter how small or trivial it may seem) and, in the process, reminding myself why I am fighting. I remain thankful for all the wonderful things I get to do despite lupus trying to kick my butt. Sometimes this can be quite difficult as living with lupus can get pretty bleak. I also remind myself that people are fighting with me and doing their best to carry me when I cannot carry myself. I am not alone, either in this battle or in the way I am feeling.
  7. I breathe.
  8. I erect strict mental boundaries as I’m someone who needs a lot of space and room to contemplate. I am a cave dweller by nature. Sharing does not come easy to me. I can share once and only once. It is one of the reasons I blog, so that I don’t have to repeat the same story over and over. Doing so causes me to become even more angry and frustrated and I find it very emotionally and mentally fatiguing.
  9. I find humour in the silliest and most morbid of places and laugh, even if it is through tears.
  10. I remind myself that, even though I share a lot of qualities with Spock or Data, I am only human.
  11. I remind myself that sometimes you need to crawl before you can walk.
  12. I think most importantly, I deal with lupus like someone would deals with an addiction: day by day. Sometimes the day by day is very difficult because so much can be thrown at you in a 24 hour period. That is when I take it moment by moment. I remind myself, “You survived this moment. You can survive the next.” That does not mean that I am not crying or raging in the process.

For those of you who are new to this part of my world and want to learn more, I invite you to read and download this plus read this and listen to this.

And once again, I’d like to thank every one for all they’ve done to support me over the last little while. It is appreciate more than I could ever articulate.


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