Deskchair Musings: Updates and Thoughts

Wednesday, November 6, 2013
The Jacaranda says 'hey!'

Oh man, I never intended for it to go this long without me updating. But things happen and life gets in the way, sometimes. I even opened up a page on Monday to start writing, but it proved too difficult and so that very short unfinished blog post has been surrendered to draftdom - perhaps to be finished at a later date.

I realised today that I haven't really voiced just how tough things have been for me lately. And as much as I hate coming across as someone who always complains, I know that I am always trying to do something about it which is an important distinction. Because I know people that complain about things going on in their life every time I have contact with them and a) don't return the favour by asking how I am, and b) don't do anything about their frustrations and problems, so it becomes extremely monotonous to talk to them again later. Don't get me wrong, some problems you can't do anything about. For these problems, I just want to say 'I'm so sorry you're going through this. Do you want a hug?' and then suggest that maybe the thing you CAN do is soften in the face of the problem - lean into the skid, as it were.

And that's what I'm having to do with a lot of my stuff right now. I will be perfectly honest and say that I have broken down a few times in the face of recent developments - I have cried, gotten extremely angry, and declared it to all be 'unfair' - but once that has passed, I try to soften into it once again. Because ignoring the fact that my stomach pains and discomfort are getting worse with time (what I would call 'hardening' in this case)? Not going to help me. And pretending that I haven't just gotten through over a week of really bad pain, discomfort, fear, and nausea? Makes me feel like I am ignoring part of myself.
And I logically know that there isn't anything my regular doctor can do for me right now. I just have to weather it. I have to deal with the loss of sleep and appetite, and keep trying to be myself. I have to wait another month and a half or so until I can see a specialist and hope that they have some answers for me.

And yes, I have theories about what is happening. I have hopes that I can finally get some treatment for this thing that has once again begun to take over my life.

But it's different now than it was back in 2009 when I finally submitted to being sick. Because I am no longer fighting it every step of the way - I am no longer in denial that something is strange in my body's neighbourhood (sorry). Yes, I am still afraid of what my body can do to me in terms of pain levels and passing out, and yes, I am still terrified that the specialist will find nothing I will have to resume my journey that has so far lasted 12 years. But I am also softening every time the pain arrives. I am being gentle with my body and trying to find food that it won't immediately reject or turn into pain. I am resting as much as I can, whilst still working on my final uni assignments (and being soft about them, too, because anxiety would just make things ten times worse right now). I am giving myself tea, books, soft clothes and calming scented candles. I am breathing deeply and stretching slowly when I can. I am reaching out to people I trust and connecting with them while all of this happens, and, when I can, I am making myself delicious food.

I am leaning in to this experience because fighting it just doesn't work, and I would rather be open and feel what is happening and share about it than be closed and perhaps alienate others going through something similar.

I am dealing with my stuff so that I don't lash out at others for making idle comments or jokes about the way I choose to live and experience the world. I am surrounding myself with things that make me joyful, because that reminds me of all that I am right now - gentle, hopeful, and not just surviving, but being myself.

Love to all who read.


  1. I don't think you get enough credit on a daily basis for how well you live with your illness. It's only when you stumble that you get attention, some of it kind, some of it not. But you are amazing. And I hope that we can continue to be amazing together always.

    1. Thank you. I think it's also a case of me not really talking about it very much. There's a whole lot of awkward surrounding that.
      Your support means so much. I love you.


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