Red Room

Red Room

I started on this artwork when I got very sick in Hungary… I was without money (was robbed just beforehand in Barcelona), food, health, energy or company. I felt pretty shattered and lost. So I started photographing myself expressing all the awful and mixed emotions that I felt coming down with a major illness.

I photographed myself in a tiny red room (at my brother’s place, hope he doesn’t mind!!) as this seemed to express where I was.. raw with emotion, in red alert with my health, locked inside a small space of overwhelming stuff and being locked inside a cacophony of emotions.

I’m sure when/if I’m better I’ll create something more cheerful, beautiful and uplifting, but for now this expresses how it all feels…

illness… still.

illness… still.

I’ve been holding off with a post like this, but I can’t anymore… If you can’t handle illness stuff or you are too close to this please stop reading this post.

I was told I might have sarcoidosis. I’m very very ill and barely holding it together. It’s unbelievably tough on every level and it’s very scary at times as I have a lot of trouble breathing. Plus pain, a cold, joint pain and the most unbelievably fatigue.

I’m due to go back to POW hospital this week and I’ll have to try to bring forward my appointment as I don’t want to get to emergency again. I often feel on the edge of that again and again. I really hope to get treatment soon.

It’s been a very stressful time as I feel very alone, very ill, quite scared and cannot earn any money. Craig and my mother help me out and support me, I couldn’t do without it. Some friends also send me messages and they cheer me up a lot.

Sarcoidosis is an autoimmune illness in which the body attacks itself. Unfortunately I already have 3-4 other autoimmune illnesses so getting this one too would not be good. It started on my legs where I have large red bumps which are an autoimmune reaction itself. They are very painful to the point of not being able to walk and come with severe fatigue and fever. I now have a lung illness of some sort which is more serious and most people with sarco have this. I’m going to have extra tests done… I hate the idea of getting one more illness. Breathing is very difficult and sometimes painful and I get a horrible and exhausting dry hacking cough.

If you want to read a bit more on it here’s an easily digestable article on it.. If you want official info go here and here.

I should take solace that most people have a mild form and often recover without being diagnosed properly or their lungs getting bad. It’s unknown how the course of it goes, I could be cured or I could have a hard time managing it. I’ll have to see how it goes, I’m hoping it’ll be manageable, though the drugs are very rough too.

It’s a very tough time for me and Craig… any supporting words welcome as we are trying to cope with it all… thanks! My goal right now is not to be admitted into hospital and cope until I get on steroids. Please cheer for me…

HOPE I CAN WRITE ABOUT MUCH MORE CHEERFUL STUFF SOOOOOOON!!!!

(artwork: Winter flight by Igor Laptev)

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September 10 update:

My lung specialist says I probably don’t have sarco, which is excellent!! I had a new comprehensive breath test to see what else is happening in my lungs. My x-ray and CT scan are clear and my coughing is getting better. My energy fluctuates and I still get ill unless I’m resting (I’m not very good at this), but I’m definitely improving.

I was told that I definitely have hyperreactive airways and had very bad bronchitis, and I was given a new inhalable anti-inflammatory at double dose. I’m now definitely hopeful 😀

Russell Peters

Shit, I think I have a new favourite comedian. After Eddie Izard and Ricky Gervais the bar is set really high, but this Indian Canadian guy is just fantastic.

Thought I’d cheer myself up with his clips and ended up watching him for hours rolling in my chair from laughing 😀

Here are some of my favourites… enjoy! 🙂

http://youtu.be/AxbrXD0kgrQ

http://youtu.be/vqn9rXu1TCM

And check out his website too…
Official website of Russell Peters

Now back to sleep for me…

Back home… yay! :)

Back home… yay! :)

After a way too long 34 hour trip I’m finally back home!! 😀

Long trips suck, but when you are really ill, struggle to breathe, endure lots of uncomfortable symptoms, have lots of pain, palpitations and precariously balancing drugs and special food it sucks even more. I’m so glad I’m home in one piece… feel so much safer back at home. I could have broken up my trip but it would have elongated the suffering and the financial drain… so changing my flights and coming home was a good decision.

Got lots to do but will just rest now and try to recover. I’m still glad I traveled for 6 weeks I had some lovely experiences and met beautiful people, but mostly this trip has been a nightmare.

Craig’s arriving back a few days after me, he badly needed a holiday from our holiday so I’m glad he can spend at least a day or two in Brighton chilling (I’m also glad we only spent about half our time together). This trip has been such a strain on our relationship and so draining. I now know that if I had my full results (yes, blame the Catholics for standing in the way of my diagnosis by blocking my local hospital in July!!!!) I wouldn’t have left. I’ll be back in hospital for more tests next week… when I had a chance to recover and digest things.

Now I’m at home with all the food my mum delivered to me, jet-lagged as usual and very happy to be here and in one piece!

Thanks to my friends who have been thinking of me, thanks to my mum for her practical help throughout and to Craig for being brave and loving through the hard bits.

Whew… I might go back to bed now.

Rotterdam

Rotterdam

I’m supposed to be here for the 4S conference but instead have been really ill. Again. Could be a new autoimmune illness playing up, or just the cumulative effect of having lots of chronic illnesses piling up on top of each other really badly after a bad chest infection, plus lots of travelling.

I’ve been silent for a while… mostly resting and surviving these awful days, locked up in my hotel… ended up going to Erasmus hospital in Rotterdam where they did some tests and reassured me that despite being ill and barely able to walk or breathe at times, I’m not actually in any serious danger and can get on the plane home.

Craig’s been really good, helping me get to the hospital and contend with so many difficulties, including all the stress piling up between us. It’s been really really difficult, emotionally, with practical stuff and especially with my health. At times I’ve been feeling so ill and so depressed about it… hope I won’t have to go through such a difficult time again.

Had to change flights (and generally being ill made this leg of my trip way more expensive than the other ones) and I’m finally getting on the plane home tomorrow. Been resting heaps and trying to keep up my weight… gathering energy so I can survive the 30+ hour long travel sequence… Rotterdam-Amsterdam-London-Singapore-Sydney.

What a nightmare…

Anyway, hope to put this behind me very very soon..

(Island by Trifoto on DeviantArt)