08 August 2010


Heavy rain all night and this morning. I woke up with a feeling of dread. Irritable like hell, alternately sobbing and cheering myself up. Poor R tried all sorts of tricks to wheedle a smile out of me.
The thought of being ill for another winter fills me with such fear. I really don't know where I will get the energy and the motivation for the long, dark and lonely days indoors.

If there is no improvement by the end of February next year, I will be out of work and without income.
Fact is that after almost one year of being ill (i.e. resting, resting, resting) and seven months of immunsuppression all that has "improved" is that I can hear well in both ears. To keep this in proportion: Last November I noticed a sudden partial loss of hearing in my left ear after two days of heavy hyperacusis and even worse exhaustion than before. Within five hours of noticing I was on a cortison drip (one of three high dosage sessions) and within 48 hours my hearing was back on track.

But the rest is still with me, the exhaustion, the roaring inside my head... the lot.
Plus the side effects from the drugs. In fact, I often think that without these drugs I would be so much better off but there isn't a doctor in this country who would discontinue immunsuppression with the combination of autoantibodies detected in my blood.

I must try to work at least for some hours in my office. The doctors are encouraging, well they were before the last set-back two weeks ago. Health insurance has given its ok. Must try out whether I can handle some form of part time work at least for a while, until my disability status has been secured (which would imply that I cannot be fired that easily) and I can negotiate on safer grounds whatever options my employer may provide.
I am so willing to work a few hours every day even if it means complete exhaustion for the rest of that day. But while this feels doable on some days  there are times when I know it's utterly out of the question. Nobody will consider me fit for work - even part time - if I have good and bad days.

Look, another hour gone, survived it, kept myself busy doodling on the internet. Such purpose, such dedication, such useless drivel.
This is what those well to do married women must have felt like in the days when being independent and working etc. were not considered suitable. Killing time,distracting yourself like hell to keep the big black dog at bay, to avoid facing the boredom and the loss and the self pity. But they could at least take up needle-point and attend boring tea parties and book circles... I am barely able to manage conversation one to one for a mere 30 min and bending my head over nifty handiwork - forget it. It has taken me three weeks in short intervals to fix the hem of a linen shirt on the sewing machine.

Snap out of it, will you?  Look around (tiny little clearing in the sky to the west), listen (screeching magpies, cars on the rainy main road behind the trees, R listening to jazz in his study, the roaring inside my left ear, the hissing throughout my head), feel (the cool wet air coming in through the window, the carpet under my freezing bare feet, my shaking hands), taste (lukewarm tea left from breakfast, stale nausea gurgling up from my stomach).

For today: ironing with rests in between, fixing a few buttons and odd ends, enjoy (!!) lunch with R, maybe a short cycle down to the river, pack bags for the trip tomorrow, watch hours of TV, cable and online (two new episodes of Mad Men, maybe some more old thirtysomething episodes, is there a crime to solve after the main evening news?), trying to read a bit.

Sun just started to peek out of the grey clouds. Hear the violins?
Time for lunch.

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