How I Survive Lupus (AKA My 12 Step Programme)

Note: The following was originally written for The Lupus Magazine. As it is no longer online and I would still like people to be able to read the articles I wrote for that magazine, I am dumping them all here. Originally published May 2011.

The past month, Lupus has been trying to kick my butt more ways that I can count. It started off with getting knocked down with four infections: a sinus infections, a throat infection, a lung infection and a kidney infection. The infections got so bad that I had to go to emergency and be put on oxygen. Due to the severity of my illness, my lupus activity increased. My lupus fog became was so bad that for four days, I couldn’t comprehend type and I ended up overdosing on my antibiotics.

When I received the new prescription, my brain was seeing, “Take 2 tablets twice a day until finished.” What the label actually read was, “Take 2 tablets once a day until finished.” I’ve had lupus fog in a very extreme fashion, but never has it affected my brain in such a dangerous fashion. Especially as I’m very careful when it comes to reading medication labels. Some of my medications, I’ve been taking for over a decade and I still read the label every time I take them just to be safe. I was terrified because for four days, I was senile. Printed words and basic instructions were not being registered and interpreted correctly in my brain. As a result, I had a mini-meltdown.

It is now almost a month since the initial onset of infections and I’m still no where near recovered. I am now combatting a terrible stomach bug. Sick and exhausted doesn’t even begin to describe how I am feeling.

When I was going through the infections last month and finally became coherant again, realising my terrible mistake, one of my Twitter followers asked me how I coped with it all. That is when I wrote my 12-step guide to surviving lupus. You will find it below.

How I Survive Lupus (AKA My 12 Step Programme):

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.


One Response to How I Survive Lupus (AKA My 12 Step Programme)

  1. I am so in awe of your writing voice! Thank you for helping me feel not so alone in the wake of this fresh hell of mine…lupus!!!
    Much love and strength!

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