Searching for a Lighthouse

When you live in a fibro fog you're always looking for light. I think I have regular tiny sparks of clarity - and they come at the most inopportune moments. In the middle of a sleepless night, sitting on the loo, in a taxi gazing into space, ... never when I could actually make the most of it.

This has been a remarkable year. I could never have imagined I would have one quite like it. Almost something of an experiment. Gagan and I have been in a little bubble. Tucked away in a city where we don't speak the language, surrounded by incredibly kind people who are sweet and polite but can't communicate with us beyond a few simple niceties. So - we are isolated to a degree I have never experienced.

The heat and humidity is punishing and has made my severe fibromyalgia much worse, which has brought on waves of depression with ups and downs like a roller coaster. A good day - a bad one. I have learned immense amounts about drugs and my body's response to them. Even more about my brain and how fickle it is - how quickly I can go from a smile to a tear.

But - through all the external difficulties of spending way too many work days and weekends in bed, a most interesting thing has been happening. Being confined inwards has actually forced me to turn outwards. I have been reading again, and watching amazing documentaries and radio boardcasts online. TED talks, Richard Dawkins, Douglas Adams, Bill Bryson, Alain De Botton - the world of science and philosophy and analytical thinking has opened up to me and given me such a will to grow on those darkest days. Gagan and I read out loud to each other... talk endlessly about things we never knew. Discuss what it means to truly lead an analysed life - and how we can try to apply it to the things that make us so unhappy and frustrated every day. We are so far from achieving it... but just to even have these thoughts is like going from a black and white world into full glorious technicolor.

Not that this doesn't come with its own problems. The fibro fog means that it doesn't really matter how turned on and tuned in I get to these fantastic ideas. I can read all these amazing scientific concepts of the Big Bang and gene theory and particle physics, but by the next day - whatever part of my brain was hungrily digesting it like there was no tomorrow, has heartily spat it out and moved back into its usual alzheimer-like Mist of the Vague Unknowing. I have no details or facts at hand anymore, I just know that I read something really cool and - what was it again?.... What I do retain is all the emotion and feeling that I felt about whatever it was I read - but no details. I think that is interesting and worth studying, as obviously two separate parts of the brain (left = facts and right = emotions?) are being employed when I learn, and only one is then being screwed over by the fibro's startling ability to toss out short term memory (due I imagine to lack of any decent REM sleep and memory building). But why do I remember the emotions? What is the relationship between memory and emotion vs memory and facts/figures? Anyway.... I ponder this, as if I had my druthers I would swap the two. I'd rather remember the facts so I could carry on a barely coherent conversation and sound like I wasn't an idiot! haHA!

Anyway... as Ronnie Corbett said... I digress. This is merely the beginning. The year has been one of desperate thinking with depression taking hold, not knowing how my health would cope. Despair as health care options ran out in the country we are in (lovely though it is). We are now just going it alone until somehow we find our way back to the West and doctors who truly understand about fibro. That has made for dark moments - and looking for ways out of them. I find it interesting that as some people blindly turn to religion, I couldn't be more comforted by the wonders of science and nature and the unknown. Not believing we are the centre of it all is of great relief to me - I don't even understand why there is a need to ask the question 'why am I here?' We just are... the same as an ant and the same as an atom.

Turning 40. Perhaps that has triggered more thought as well. I didn't like it much. Maybe because the constant sickness is making me look much older so suddenly. I never felt old and now I do. A young husband is a good thing! We laugh and are very immature and that feels nice. This closeted life is something to cherish in a weird way perhaps. It feels like a strange pretty prison sometimes. But one I shouldn't take for granted. If I am well enough to read and learn - then I am growing. I just hope the times I can solidify some thoughts I can get them online as well. Musings are always good for a laugh when you look back on them!

3 comments:

  DonJuanna

1/5/10, 8:57 PM

I miss you!

  Stephen

3/15/10, 9:10 PM

Oh dear, my mom speaks of the fibro fog a lot! She has lots of health problems but perhaps that is the oldest. I didn't realize that humidity made it worse; I guess I figured heat might help? No?

Cheers to learning and shining a light on yourself, even if by plain necessity, such as from being so isolated. I would love to talk to you more about India and Thailand, two places I very much want to go.

  jude

3/15/10, 10:39 PM

Yay.. thanks so much Stephen! No... sadly humidity is a real bummer... but them's the breaks. Let's see if 2010 gets us back to the West! Until then I am immersed in learning and that is something to be grateful for!

Oh I can talk about India (and Thailand too though I know less about it with having no real language in common!) endlessly... if you ever want to talk just PM me on the forum! :)

 


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