Tuesday, 6 September 2011

Lupus and Apple Pie

I have been resting, basically in what is bedrest, for the past day or so. My face is flaming red with the lupus mask, all the ittybitty joints in my hands seem to be shouting out loud and the exhaustion, well, fatique is what they call it but call it whatever you wish, it is not a terribly lovely feeling when you simply can not stay awake and your whole body feels like there's lead in your veins instead of blood. And if I hear one more person tell me that I need to not stress I will scream. If I have the energy, that is. I mean, I know. Controlling stress helps in trying to control the actual physiological manifestations of lupus. If you have SLE, even so called normal daily stress can exacerbate the disease, the musculoskeletal and skin symptoms, the continuous fever and pain. But what can one do, live in a bubble?

No. One can not live in a bubble. Moving to live as a hermit in some Arctic Sea island is hardly an option. Sooooo, what actually is an option? Since much of the stress in our life is also caused by things beyond our own control, the behavior of others as well as unforeseen changes in our professional, financial or social life, the only thing left really is to turn the gaze inwards and try to find a way of not letting it get to you. Which I am crap at. But damn if I don't try. 

I've been called a bleeding heart liberal, an eternal idealist, a soft-hearted fool who carries all the troubles of the world on her shoulders. When I was a lot younger, about a half of a life-time ago, I used to keep up a shell of iron. Helped a lot I might say when you are hell bent on banging your head and fists against every single real or imagined fence of ignorance or injustice. But, as I got older and the shell started to, instead of growing thicker, to crack,  as the skin on my hands started to show through the fissures, to bleed and to grow scars, I was faced with a choice. Either you stop caring and let it all just wash over you or you still bang your head and your fists and you hurt and bleed and grow scars and cry and care, but this time, without the protection of the iron cover of the youth. 

Well, it's pretty obvious what I 'chose'. Which makes it a bit tricky now that I am also dealing with this little misbehaving disease of mine. Catch 22, one might say. But what's a life without challenges, huh?

Yesterday I enrolled the Daughter in swimming school, and am myself contemplating starting figure skating classes for adults. And for sure, it's off to the gym via a trip to a physical therapist very soon, even if I can only do five reps instead of the 75 I used to be able to. I've been told to try things like yoga or tai-chi, so maybe I will. I would love to be able to take dance classes again, though I know I will never again get to the point where I myself would be able to teach them. But what I will be able to do is take long walks outside in the evenings with my Daughter, bike rides too. To see the season once again turning.

And as it is indeed autumn here, I have, when I have the energy, been up to all sorts of bakings and preserving-of-thingies. Recently I made this apple pie, I mean, what could possibly be more autumny than an apple pie?

The recipe can be found 
and a similar one in English

I have also gotten bitten by the home improvement bug. Again. And my bank balance is right now thanking the fact that I am drawn towards the old and rickety instead of the brand-new and designery...

In the bedroom.

And whoever says books don't breed hasn't been to my house. When we moved in here last October, I covered half of the walls in the living room with bookshelves. And now, that is no longer enough... There are books stacked on practically every flat surface, on top of the rows on the shelves, on floors and chairs. Soooo, what else is there to do but dedicate one more wall from the living room to the books...surely I did not hear anyone whispering that I should contemplate selling some of them....Nooo, come to me little ones! Do you know what I did just the other day? I checked some facts I needed to know in an actual encyclopedia instead of Googling them and how lovely was that I tell you. I mean, I know I know, technology is everything, but real life books for me, yes, I am one of those people who sometimes just smells books...

And as poetry
is one of
the loves of my life,
below is just one of the many
new additions 
my flock.

Poetry by
Margaret Atwood.
If you've only 
ever read
her prose, do check this out.

And on a different note...
another ittybitty addition,
but then again
maybe not 
so different after all.
Identity in Difference. 
Good Ol Hegel...

It is now afternoon and I am in bed. I wonder if I can make it outside today, there's a breeze out there throwing the leaves around. I can see it from my bedroom window. I think I am going to try, maybe a trip to the library, even. And because I have come to realise that even though lupus is much more common than is generally thought, people tend to know very little or nothing about it and that has a straight effect on the time and money given out to research and, of course, to finding a cure. So, please watch the video below and spread the word. 

Thank you.

1 comment:

  1. Wow, thank you for the video, it taught me so much. I can't believe that science is so undeveloped in Lupus, but with raising awareness I believe that this can change. I know that'being positive' and 'not stressing' is extremely hard at the moment, but there's a book that may help: "Heal Your Body" by Louise L. Hay. I haven't tried it myself but have heard very good things about it.
    It's wonderful to see that you're enjoying life's moments and making the most of autumn. I don't think I can resist adding the 'smelling books' image onto my blog :)
    Wishing you faith and love in this difficult period.