so look at it this way

a lot of learning to do, lots and lots
I think I can do this
not all the time
not every day
sometimes I will try to run away
some days I won't be able to do this alone
but there will be learning every day
even in winter on dark days
I am still me
no idea where this will get me
just this much I know
looking back gets me nowhere

trying to climb up again

I had the most wonderful half week since last Thur because with the banjaxed MTX shot last Wed there was no nausea at all. I mean NO NAUSEA and thus no need for drugs to counteract nausea so no wobbly legs from that either. I had a clearer head and was feeling better alltogether, cycling every day and even cleaning the kitchen cupboards.
Bliss. Memories.

And when K slowed me down yesterday in his surgery suggesting (i.e. no!) I wait until at least the end of Oct before attempting any regular work in my office - even if only 1-2 hours/day - I did not flinch but took off on my bicycle, got myself a fat newspaper and sat down in a café to read.
Back home I had the shortest of rests and started on some serious desk work, i.e. moving my head up and down and around and taking notes and so on and slap bang I was back down in that dark corner with the roaring head and the lot.

When R got home my face was beetroot red and I was shaking with fury and disappointment. He kindly guessed it may be a shortage of MTX what with the messed up shot and we both reassured ourselves that this was just another little slip on the big road to recovery. Ignorant fools that we are.

So today my friend nausea is back. Fear is humming around my head.

Let's face it again and again:This is the shape of things to come. I am chronically ill. This is my life now. ACCEPT these symptoms and stop feeling miserable.

Behind the hardness there is fear
And if you touch the heart of the fear
You find sadness (it sort of gets more and more tender)
And if you touch the sadness
You find the vast blue sky.

(Rick Fields)

almost autumn

There was so much rain this week! In August, high summer. Today feels like autumn even with the lush garden smelling of wet lawn and compost. Another batch of delphinium ready to flower and the greenhouse full of ripe tomatoes.

I must steady my mind, go easy on my fears. Thinking of another long dark winter being ill is so dreadful. I am pushing away this thought and yet it sits there inside my bones and my brain cells ready to jump and shout. I move through the days counting the hours that pass, congratulating myself when I managed to make it through another day without too much sadness and self pity.

I just deleted a long whine about my miserable attempt to try and work for an hour in my office, sneaking in last Sunday while no one was around.

My concept of a working life has to be totally redesigned. No idea how. I am so mad. Nothing in my life has prepared me for this train wreck.

But I have made steady progress on my bicycle, doing 7 km now on a stretch along the river, gently, slowly, but what bliss. Today R made me this gift: He drove me and bicyle up to the hills and I cycled all the way down through the forest with tears running down my face, shouting with joy. If all things fail, let me do this once a week at least.

from the website of C's Buddhist place in France

Our problem is that inside us there's a mind going, 'Impossible, impossible, impossible. I can't, I can't, I can't.' We have to banish that mind from this solar system. Anything is possible; everything is possible. Sometimes you feel that your dreams are impossible, but they're not. Human beings have great potential; they can do anything. The power of the mind is incredible, limitless.

compassion

There I was lying in bed this morning listening to the noises coming in through the open window: birdsong, a complaining cat, neighbours leaving for work, the usual. I was resting my head on my wonky ear and slowly slowly the roaring rumble inside it took over.

And this thought came along.
This is me, it's my roaring. It's been with me now for almost a year. It has frightened me so much, changing in intensity, changing sides, making me dizzy, distracting me no end and waking me up at night.
But I am still here, I can hear with both ears again.

Let's do this differently.
Let's try to like it. Show some compassion, accept it. It's me - for the time being.

The roaring inside me.
My roaring inside me.

(Says the little little voice deep inside of me and beyond it all: But after a while longer you better disappear please?)

ah yuk

The MTX shot went wrong tonight, about half of the stuff didn't go in, spilt all over my jeans instead.
So I can freak out now and watch my every breath or I can just get on with it. We'll see.
But I have to call Dr. B in the morning.

clap your hands

I want the weirdest things from life, so what about going to an open air concert hiding in a crowd of singing stoned people half my age...

watching the night sky

Hoping to catch a view of Perseids we were stretched out on the patio stones last night watching a very clear and wide open sky. Once my eyes relaxed more and more stars became visible and the sky seemed to open up above me and the spectacle began.
Of course R saw one falling star after another, while I was dutifully following planes crossing from all directions. Never mind.

And all sorts of memories came rushing in of another hot summer night in Cactus House watching for falling stars with the kids and the sound of the waves from the beach. It had been a fantastic summer and they were all giddy after weeks of sun and sea. First it was all shouting and messing about but soon they calmed down and eventually were almost still with wonder.

Then D came to mind, this charming and clever man. I heard his quiet laugh the way he would point out a funny Doonesbury line before solving the cryptic crossword in record time.

late summer

The nights are getting cold, not that I notice much because I sleep like a log for about five hours most nights seemingly waking up in almost the same position I was in when I fell asleep. Long may it last.

Grapes are ripening, some of the summer blooms are already finished, we are picking tomatoes and peppers and aubergine and radish and sweet corn in the garden.

R is back at work. I miss him badly during the day. But this first week of solitude passed quickly. I try to have a reason to get out - struggling at times - every day.

Today was/is rough, I feel feverish with a beetroot red face and a roaring dizzy head, stiff neck and shaking and shivering in between. But I took the little cat to the vet to get an infected wound cleaned out (the old lady fights a lot) and even managed to translate part of a paper on some novel orthopedic surgical technique and I will charge loads for it once it's done.

Last week I completed my first TED translation and have done a couple of TED reviews. No money but stimulating work at my own pace. Lots more work there for me.

Also had the meeting with the legal advisor regarding disability and pension and my employment situation. He was impressed that I have been called to show my case to an expert panel, thinks it looks likely I'll be granted a favourable disability status (i.e. high which means tax rebates and bargaining power when negotiating to have my working hours reduced)

If ever, if ever...

R has recently started to listen to swing and blues, mostly old stuff. At the moment, he is cooking something spicy and steamy, while the Hep Cat Daddies are belting it out at full force.

reading Kenzaburo Oe

"Endurance" is a word I value highly. Because everyday there is chaos. [...] People who decide to live with this chaos have the ability to endure. [...] The problems I had to overcome have made me the person I am today. If I would not have had to experience this pain, this sadness, I would not have become interested in writing.

the universe

Yesterday we visited an exhibition on the wonders of the solar system in a very unique and impressive location - inside the giant decommissioned gasometer in Oberhausen, an enormously tall dome, almost dark, with sounds echoing from the walls and people flitting around on several galleries. Just below the top hung this enormous model of the moon, gently swaying in the air.

I listened to the Voyager Golden Record, sounds of surf and bells and rain and horse-drawn carriages, Beethoven, Mozart and Gregorian chant and a tiny child's voice saying "greetings from the children of planet earth" and felt so lost and insignificant yet comforted at the same time.

Later, I sat down for a while and watched some kids with sparkling runners skating on the platform below the moon. It was so dark, all you could see was the neon pink and yellow lights from their heels accompanied by their echoing shrieks of joy.
And I had to laugh and cry a bit, me and my stupid self-centered pity and selfish misery.

reading Christopher Hitchens

To the dumb question “Why me?” the cosmos barely bothers to return the reply: Why not?

another one bites the dust

For almost four weeks I have been trying to do some sewing, just a couple of simple repair jobs. I have been avoiding it - instinctively it seems -  while at the same time aching to get it done. So this afternoon I told myself firmly to get on with it.
About one hour later it was done. And the sea sickness was overwhelming.
I'll pack away the sewing machine tomorrow.

It's not as if I have been strongly attached to dressmaking or patchwork quilting etc., I am just mad!

solitude

After almost two months with pleasant and loving company, first with N and then with R, I am back on my own at home for the day. I am trying to be very good here, staying with it so to speak. And really, we are talking of a mere 8-10 hrs during which I am able to keep myself occupied - sort of.
And there is shopping and preparing meals and some housework - all possible with regular rests in between on most days - and then there is a bit of real work and the prospect of being allowed to return for a few hours to my office.
Still, the taste of panic creeps up, my stomach turns, the hissing and roaring inside my battered ears and balance organs get louder and louder and I have to force myself to stop listening to symptoms. How I hate having to find little distractions. Keep on checking my watch to see how much I have managed so far (6 hrs!!!).

Pema Chondron says

"To stay with that shakiness—to stay with a broken heart, with a rumbling stomach, with the feeling of hopelessness and wanting to get revenge—that is the path of true awakening. Sticking with that uncertainty, getting the knack of relaxing in the midst of chaos, learning not to panic—this is the spiritual path."

my father's dinner

On Wednesday I will be the spectacle of one of my father's family dinners. He organised this months and months ago - as always thinking ahead - with all good intentions. This is not the problem here. We will be driving south tomorrow, 4-5 hours on the road.
He has organised it so that I have Tuesday as a day of rest and quiet before the entire clan is getting ready to gawk at me. He is paying and they will all come. Most of them will have their own concocted stories based on hearsay and they probably expect somebody worn out and doddery. So all will be pleasantly surprised to see that I still have four limbs and that I can talk and even smile and that will be that. There will be the usual general platitudes and then we'll all go back to our own homes glad we don't have to get involvd here. And my father will feel assured that I am getting better.
My sister will get lots and lots of mileage out of it, more stories so she can continue shopping for sympathy for having a sister with a chronic illness. She is a great co-sufferer. My brother will be bored, he has not been in touch at all for the entire year and why should he?
My dysfunctional family, cold and hard and unforgiving.
Hopefully all will be over and done within the space of two hours. Like any other appointment with a doctor.

So why are we driving all the way then? Why go at all? Well, it comes with a package, the fancy hotel for three nights was the bait I took together with the fact that it means R will have had a bit of a break before he is due back to work next Friday.

rain

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.

left and right

Summer. I am four years old, maybe five. Me and my sister are sitting in the back of our aunt's snazzy Merc. She is the glamorous one, our father's wild sister married to a successful solicitor, bored with interior decorating and dinner parties, childless, wasting her time getting her hair and nails done, shopping, smoking, arguing with her mother and brothers and husband.
(She eventually got divorced, built a successful career as a radiologist, travelled, married her childhood sweetheart and died of cancer aged 55).
Anyway, here we are, two little girls dazzled by all the glamour and the no-nos, like eating ice cream in a moving car without being told to watch the upholstery, listening to Italian pop music from a car radio with all the car windows  rolled down - we both know that this is definitely not something to tell our parents.
Earlier we passed the shoelace and the shoe buckle test, we are smart. But what about left and right? Of course my big sister knows that, but I am not so sure.
My aunt holds up both hands, nail varnish and jewellery sparkling in the sun, the car drives on effortlessly on its own. She looks at me in the rear mirrow and smiles.
Look, she says, it's easy: Your left hand is the one with the thumb on the right, and your right hand is the one with the thumb on the left.

I get it wrong most of the times to this day. Sitting in the car next to the driver I mostly point or say: there, but I can read maps really well. When I have to give directions I have to concentrate and before I decide whether it's left or right the image of my aunt's hands up in the sun in that car still helps.

whining existentially

So where is the hardship?

I am unwell, most of the time. The drugs and the ever changing regimen - increase, slow phasing down, flare up and another increase - exhaust me. The symptoms make long stretches of any activity impossible. The last flare of vertigo behind me, I am now mostly sea sick and shaky. If I try to ignore it, I break out in sweats and nausea builds up rapidly. I can only function in short episodes and that in itself is awful. At times the debilitating and even fatal potential of this disease means I lose the ground beneath my feet for a bit. This is hard going as I am a very slow learner when it comes to being out of control. Usually, I rush into mindless distraction (i.e. online TV) for a while.
So, I do little and yet I am washed out at the end of each day.

And on and on and on...
I could describe my symptoms and my anger in more and more detail probably finding better and even clever words as I go along. So boring, so tiring, so useless.

Fact is

• I can do this in the comfort of my home with pretty much all the mod cons that I need to get through the days and nights without too much struggle

• doctors/physiotherapists etc. are a phone call/short trip away

• I have decent health insurance - for the time being

• the drugs I need are readily available

• there is not much pain and I can sleep most nights

What's at the core here is that I am out of the picture, now that I cannot function in the usual 9-5 pattern I am not required, that with the loss of my job present inability to return to work pretty much all meaning seems to have gone out of my life. This is so ridiculous and yet it's a fact.

So I have signed up with a couple of volunteering projects and submitted one proposal for translation - occupational therapy really - and I made an appoinment with a legal advisor specialising in disability issues and reduced earning capacity.

I recognise that I need to be needed and that I need to look into this.

accept accept accept

that I am not going to get well enough to return to my place of work (and income)

that I will most likely lose my job

that I will have to fight for disability benefits

that this will be complicated and stressful

that money will become tight unless I can set up some form of self employment which feels far too complicated and stressful to even contemplate at the moment