it's terribly important not to be too gloomy

The fabulous Mary Beard speaking.



At around 6:30 am after a night when I exhausted myself on the battlegrounds of gastritis I realised that I really don't have to go to work at all today, I can just call in sick and if they hold it against me, so be it.  Which of course is paranoia on my part because labour protection etc. Also, as my clever daughter pointed out to me, complaints about my work in general solely based on my age is a rights violation (that's called ageism, mum, don't let them get away with it).
So, I am staying home because I am old and sick or maybe because I am sick and old. Take your pick.
Or rather, because I feel like shit and just want to potter about a bit, watch/listen to Mary Beard, not brush my greying hair, read my book with a hot water bottle placed on my bloated tummy.
And: no apologies.

The river is receding, the birds are very busy courting and getting things ready in the hedge for their spring marriages. Even the sun came out for a (very) short while.

new year's resolutions

According to reliable sources, Seamus Heaney’s  final words just before his death in 2013, texted to his wife, were noli timere –  do not fear.

If I should have to try and spell out a new year's resolution, Looking forward to next year, I could do worse than to bear these words in mind.

Because the more we fear, the more they win. Right? But then another new year's resolution of mine is to always ask, who are they?

My dream resolutions, the ones I haven't yet properly examined but which the spirits and fairies and pixies of winter have been whispering into my ear: retireretireretire and see someone about that paralyzed right foot (as in get to walk properly again).

And while we're at it, the big one, the resolution of resolutions, is to only buy stuff we need, absolutely need. This is actually not  very difficult now with R starting on his meagre pension next month. And seriously, we have everything we need. Stuff wise.

Other than that, I will let shit happen. I am 60 now, no need to get too excited.

New Year's eve was exceptionally mild, a weird spring day. We sat outside with our mugs of tea. We cycled without gloves. Today, it is cold again and that poor Meyer lemon is probably going to react badly to us moving it in and out and in and out. Right now, it's flowering and downstairs smells like Spain.
This was a week ago:

What do you do when you are unhappy in pain?

Sit quietly for a few minutes and become mindful of your breath as it goes in and out. Then contemplate what you do when you’re unhappy or dissatisfied and want to feel better. Even make a list if you want to. Then ask yourself: Does it work? Has it ever worked? Does it soothe the pain? Does it escalate the pain? If you’re really honest, you’ll come up with some pretty interesting observations.

Pema Chödrön

On a scale from one to ten, this pain is so obviously nothing. I have experienced much much worse. But on a grander scale, it is massive. It spreads from my lower jaw around my neck and deep into my heart. This, of course, is not really pain, it is my fear of it.

There was a time in my life, quite a long time in fact, when it would have been incomprehensible to let something so small stop me from being alive. I used to believe that everything was always just down to options, taking steps, brushing back your hair, getting a move on, etc.

To feel so utterly at the mercy of all those unreasonable terrors that found their way into my clear and pragmatic mind.

There is short moment in episode two of The Honourable Woman where we see one of the characters waking up and before opening his eyes, he whispers the Prayer upon Arising. Strange how this moment has stayed with me. Ever since, a little voice inside my head has been saying, if only I could whisper something mysterious and sacred when I wake up, surely my days will be... what? Better? Meaningful? Serene? Whereas my pragmatic mind just sighs, here she goes again.

In my sunny kitchen, I wash and chop big fat yellow pears. I have watched these pears from their early blossoms to full juicy ripeness, they are my spring and my summer. I fill the juice extractor and force my mind to stay still, watching, collecting, measuring, extra slow whenever my thoughts begin to race. One week, the dentist said. Let's try this gel and if it doesn't work, we take it out. He also said, x-rays can be misleading. Or maybe he said this another time or I read it somewhere. 

I pour the juice into the big pot and add the sugar, some lemon juice, star anise and cinnamon. I stir slowly, my  mind going in circles. I will need some time off work if the tooth has to come out, I need to ask my immunologist about painkillers and antibiotics, lab work, liver values. 

The house smells of pears, I fill the jelly into the jars, screw on the tops and turn them upside down. Beautiful jars of golden jelly, there in the sunlight on the window sill. 

Later at work, a friend calls. After complicated surgery earlier in spring, she is now thinking of coming back to work. We talk about pain and painkillers. I know she has gone through hell but still, I blurt out about my tooth ache in my most miserable whiny voice. Whatever happens, she tells me, don't allow it to seize you, to take over, to run your life. She cannot see that I am almost crying now.

On my way home, it has started to rain. I am late and the only person cycling through the dripping forest. The gorgeous dripping forest. I check behind me and down along the path in front, just in case, before I start to shout and cry and howl and laugh. By the time I am out of the forest, my face is wet. Rain, tears, whatever, it's all water. 

I push the bicycle down the small lane behind our garden, shaking off the hood, brushing back my hair with one hand.

I know, I feel, I must own this, must stop running from it. I am not quite sure how to go about it. Not yet.

This has been a difficult week. 

Here in my lovely warm home. 

I look out over the soggy lawn and the limp nasturtium killed by last night's frost, turning my face towards the briefest glimpse of sunlight. On Tuesday I packed it in, stopped pretending and everything has become hard work. When asked how I feel, I change the subject. That's the easy part. I want to do it right this time, or at least better, more dignified than four years ago. 

Because it's big, this one. Oh yes. 

A veritable eruption. 

This time, however, I want to be grown up about it. Not so insulted, so angry, so childish. 

None of this drama queen stuff. 

The worst case scenario is as ever: unbearable pain, loneliness, death. And of course, nothing could be further from the truth. I am comfortable. This being winter makes it harder, I think. But maybe not so. The early hours are still dark and silent when my mind begins to roam and speculate, when symptoms spin out of control and my breathing becomes shallow - until I catch myself and slowly begin to pull myself up from the deep hole of everything and nothing.

In my dream last night I was being poisoned. And while I was carefully examining all the food in my larder, suspiciously discarding one thing after another, I realised that the poison was me.

So. A bit of a fever, a crimson red cheek, sore gums and throbbing upper jaw. Today is Sunday and the sun is out at last. The week's laundry is drying outside. Woke up last night just before dawn. Tooth ache and this song in my head, I swear. I will postpone the rest of my life until I have seen the dentist tomorrow. I am scared shitless. But what else is new.

and I don't feel too good

After all those serious talks and tests and drugs over the years tooth ache stills floors me like nothing else did. This evening I was waiting at a traffic light and cried I was so fucking scared. 

The friendly dentist - as gently as he possibly could - had just tried to fix another one of these ongoing gum inflammations with some of his magic, drilled and sanded away a tiny spot of decay. The next couple of days will be a bit rough, he said. 

I am 55 years old and have only 24 teeth left in my mouth. Four were sacrificed for beauty when I was a kid (my mother loved orthodontics) and another four got lost in the great dentist disaster of 2007 and today I have been told that maybe, maybe not, another one is at risk. This one could definitely be collateral damage. The drugs keep me alive but I pay for it with my teeth.

(Now, I am a dental hygiene fanatic. Always have been one. If there is anything I am really proud of as a brainwashing mother it's the fact that my child has almost perfect teeth.)

I have been told that my liver could pack up within years, that my kidneys are at risk, that without the drugs my hearing could go in an instant, my eyes, my heart, my lungs, all the parts of my body supplied by small blood vessels - basically everything apart from maybe nails and hair. Serious, but, well, yawn.

But tooth ache makes me weep like a lost child. And so I sit in the car with my tears running down my sore red cheeks when someone knocks on the side window, makes a sad clown face, a funny clown face, blows me a kiss and runs off. And I notice that the radio is on.

Oh how I wish I could be harder, let stuff bounce off me and not let it come so close, so overwhelming and all consuming.
Some people can just stay calm no matter what.

it's hard, I know

bruised

Since the big clean up after the storm mood and energy are down. Muscles ache and soul is sore. Rain outside. The storm washed away all of the rambling roses.

The ache inside my gums and teeth feels like a cold metallic lump. This is nothing, I try telling myself. This is superficial. Skin leasions and nerves picking up some signal. Harmless.

toodle di doo

I am no fun to live with, really no fun. I mean, I wouldn't want to live with someone like me, forever moaning about this and that and always so bone tired, with a wonky digestion and picky appetite, to say nothing about those panic stations from time to time. Then there's all that self pity and what with spring and summer coming. I mean, we put last year on hold already. Don't tell me this never ends??

Rant over.

the great dentist disaster

After cutting a neat incision into my barely healed gums and flipping back a short section of it, the oral sugeon is using a tiny sharp scalpel to scrape back and forth along the now exposed bone surface of my upper right jaw. With neat little pliers he then proceeds to clip off a small bone fragment that has been  protruding into my gums after all of my upper right molars had been surgically removed during the previous eight weeks, slowly, one by one, due to an infection that had spread from a piece of tooth root left behind by sloppy dentist work a few months earlier. Somewhere along the lines, during the three months with a gaping wound inside my mouth, a nerve was irreparably damaged.

All this happened in the first half of 2007. It took several months and very heavy medication to check the pain to a bearable degree. However, the nerve damaged meant that I continued to suffer from waves of neuropathic pain on and off, more or less all the time, and over the next two years with the help of a fabulous pain therapist/anaesthetist I was able to slowly taper off the medication for that. It sounds gruesome but I should remember that during that time I climbed Mount Etna, did several long-distance cycle trips and translated some of my best work - and lived a wonderful life.

For the last two weeks due to a more extensive case of inflammation of my gums - a side effect of the immune supression - a phantom scalpel has been scraping along the bone surface. Most of the time.

I haven't the slightest idea how to fit all this into my present precarious set up. Sometimes I just want to kick my head against the wall or wail like a wounded dog and stuff like that. But I know that's not going to help. Not one bit.

Breath in.

Breath out.

And pin my hopes on medication once again. May all gods and godesses bless my health insurance and doctors - and R, of course, for holding me in the nights.

unrealistic resolutions for 2011

• phase out immune suppressive drugs
• visit S on the other side of the planet
• spend at least two weeks in Scopello before the next winter
• cycle from Rhône glacier to Lake Geneva
• do yoga without vertigo
• knitting and quilting (my head is so full of colours and patterns) without vertigo
• join a choir

semi-realistic resolutions for 2011

• spend time with S
• work regularly again, at least part-time
• cycling into town
• gentle hillwalking
• reduce immune suppressive drugs
• stop listening to/reading horror stories about autoimmune vasculitis
• paint the kitchen
• make sourdough bread

realistic resolutions for 2011

• go easy on R 
• rest, rest, rest
• pay attention to the moment
• good food, careful diet to avoid more itisses
• listen first
• accept, accept, accept
  
• remember
• trust
• be grateful without getting soppy
• send S a huge parcel from home
• stop being so negative about yuk I cannot change
• give without getting exploited
• welcome challenges

laryngitis and sinusitis meet bronchitis

All good things come in threes? Any other -itis out there? Come on and let's get it over with.

Bored, coughing, sneezing, shivering, snotty, shaky, aching, cabin fever.

For absolute excitement I am considering wrapping up really well and driving down to the river for a good look. Sneaking out of my prison so to speak.

Sunday

Like a surprise gift it has been such a beautiful late summer's day with a brisk, warm, southerly wind, lunch outside and deck chair reading.
I can hear the crane and the heron getting ready to leave for their warmer winter residences. Any day now their noisy formations will fill the sky.
My three short stints at work in my office last week fill me with hope. So what if I can only manage short periods? Driving there, sitting at my desk and working for 1, 2 hrs, driving home and crashing out. Maybe I can do this just as much as being bored at home, shuffling around like a demented housewife and crashing out then.
On Friday Prof S and Dr Z were there and full of sound medical advice and understanding. All are really supportive - so far - reasons to be cheerful. I straightened up and cleared out a lot of useless backlog. And I got a sense of autonomy, of doing something not for the sake of keeping myself distracted, occupied.


So, while I am not getting better, I am at least improving on my coping skills. Slowly.

today

• finished a soppy novel about a childhood summer picking cotton in 1950s southern US, in bed with the window open and the cold air rushing in
• read absolutely all of today's paper for breakfast
• reviewed a translation of a Jane Goodall talk (ruffled the translator's feathers with my changes - tough)
• started to review a translation of a wikileak/Julian Assange interview
• received a paper on women and NATO to translate 
• spent 45 min with my physiotherapist angel
• did all three sudokus in today's paper and the one from Sunday's Observer for lunch
• answered a phone call from my boss who wants me back no matter how many hours I may be able to work
• drove to my office and spent 90 minutes at work
• chatted with U who just returned from hillwalking across Madeira
• followed G and W's blog about cycling to China, they have now reached the Black Sea
• sat in the car reading and, when it got too dark, sleeping while waiting for R to come back from his run
• cooked microwaved ready made frozen dinner
• injected weekly dose of MTX
• collapsed in front of TV watching another political superficial talk show on the 20th anniversary of German reunification
• managed to ignore symptoms occasionally
• spread my bits of activity through the day as if I was carefully squeezing toothpaste out of the last precious tube

one year

Several months ago I told R and S that I'll give my best for a year and if things have not improved I'll see what I'll do next.

Now I have given my best - whatever that is - for one year and things have not improved and I haven't a clue what to do next.

Apart from the fact that there is absolutely nothing to do. It's not a do thing at all. It's a grin and bear thing. Only there is no grin.
Today I feel swamped by sadness. Or maybe it's just self pity. Or both. Who cares. My luck has run out.

Remembering the energy and the urgency and the trust I put into my recovery last year at this time, how confident I was that there is medical help, that my body knows how to get better, that time will heal etc. etc.
This is so distant now. Feels like watching a different person. I feel so reduced, diminished,  frightened and alone.
What has become of me!
How did I get that small?

How do I get out of this fucking mess? Ok, I have to accept there's been a  paradigm shift - as someone recently put it, ever so cleverly - in my life. Now, where are the tools to cope with it? Every itsy bitsy IKEA shit has a manual, so why is there none for this shitty autoimmune disease?

Half a lifetime ago, rattling the perimeter fence at Greenham Common US air base, shouting,  and singing in a crowd of three million women, I physically felt this wave of fury being transformed into energy and strength.

Why do I remember this now? I can barely make it upstairs today. My fury today is a flood of tears. The only wave is one of nausea.

this morning

Waking up after a restful deep sleep. Birdsongs, cold autumnal air rushing in through the wide open window.
First thoughts forming, images whirling around, slowly coming to settle on a more coherent concept:

This is not my fault.
I am not fragile.
I am not delicate.
But there is something very very fragile and delicate inside of me.
Careful, careful.

The vast blue sky.