round about

Woke up this morning to gorgeous birdsong and the realisation that the awful echo in my left ear had disappeared. Bliss. Noises have become just noises not big roaring bombs exploding in my head. The hissing is still there, a steam valve inside my head about to burst. A new, higher pitch with less reverberance.
But as I started to look out into this day the world was turning. What an irony that on my last day in this clinic I am back to the one symptom that cleared up within the first few days here almost four weeks ago. Vertigo. Not a fair exchange but what is fair. Vertigo has come and gone so often in recent years and so did the last two - and heavy - attacks since Sept. I just hope they don't keep me here now for another week.
At breakfast where the bad sleepers met and compared notes of difficulties with digestion, TV noises and worrying thoughts during the night, G. spoke about how this present span in a life is just that: a timespan and that when viewed as part of life so far we can see how life changes and always has and that this time span will also come to its end and change into a new one. Accept this and do not fret or compare.
She said this with her gentle smile and her primary school teacher voice and I so much hope she can accept it for her own rather horrific situation. I will take these words into my day now.

doctor's appointment

She is so confident and explains it all in such matter-of-fact words that for an instant, a short tiny instant, I feel safe and secure and on my way to rediscovering health.
And I talk with the Pakistani taxi driver on the way back and we laugh about something and compare parenting notes and life is almost normal. And then I turn a corner and panic, the old nasty crone is back staring me in the face. And I have to summon all my strength to send her away.
Nasty symptoms of the day: some heart racing, the odd heavy duty extra heart beat,a hot face, prickling head and hyperacusis in the left ear - yuk!

impermanence

I live in a rainbow of chaos.
"It is important to understand" - but how and why is it so damn hard! - "that impermanence is not a negative aspect of life. Impermanence is the basis of all life. If what exists would not be impermanent life could not go on", says Thich Nhat Hanh who must know it. But he is a smooth and careful Buddhist monk and I am a chaotic control freak with multiple health issues spinning me out of gravity.
At least I slept a solid night's sleep even if waking up meant facing the same intense symptoms as yesterday.

non day

This was a non day, it did not feature, in fact it was horrid and went in a blur of pity and panic and feeling alone and other such like emotions. The preceding night was shitty hell but at least I could hear birdsong after 5 am which somewhat alleviated the irrational fear of death, my night time companion.

So how about some good stuff?

This is a quote from an interview in last w/e Observer with the Swedish architect Eva Gabrielsson, the partner of the Swedish crime author Stieg Larsson about life after his sudden death:
"I want to show what hell is. But also I want to say: Don't be afraid. Embrace it and you'll get through it. You become somebody else. You can't sleep, you can't eat, you are in total distrust of the world. But this is the way it is supposed to be. There is something in our genetic code, something primitive that takes us over because our rational self cannot deal with the reality. You are an animal now. But the more of an animal you are, the safer you are: it protects you. It's there to help you survive."

And this one from Hilary Mantel in the same paper:
"I had not always been lucky, had not always been blessed, but, illness aside, I had a savage and hidden faculty for managing my desires: for slapping and pounding fate, a rickety raw-faced amateur who should never have stepped into the ring with hard-faced likes of me."

My next step is to get the messages. I'll try but what a job!

another month of helter skelter

Life has shrunk and yet has become so enormous, too much to bear or even think about, at times then again simple tiny short minutes of bliss and calm - and whoosh thrown back into this whirlpool of panic and fear and fury and why me why me why now what next and on and on and on.

Coping strategies, I am hard at work with coping strategies. I have spent almost four weeks now learning coping strategies. Coping with side effects of medications, with symptoms, with fear, with boredom (yes, boredom, it comes with not being fit enough to move about most of the time), with loneliness, with loss, with mourning for my old self. Slowly working out daily patterns to ensure regular food intake (not easy), regular rest, regular exercise, attention to the various disaster zones in my body through exercises I have learnt in the last 4 weeks - and unlearn in a moment of panic. So much doubt, so much to do and cope with. Such a lot of  detail required, such fuss and how I hate having to rest. Fuck rest.

Facts: I am going through a heavy flare up of what is called autoimmune vasculitis. My symptoms are apparently all well in line of what can be expected. A flare up may take its time, typically up to 12 months. In other words: ONE YEAR. So where do I start counting from? No, don't start counting. No.No.
One day, look back and count and say: Hah! I have done time.
Another fact (?? still not convinced): Even with such a heavy flare as then one that has come over me recovery is quite certain and doctors tell me of patients who are leading normal lives. Afterwards .Wow,  normal life. I love normal life, boring normal life when a trip to the corner shop is just a trip to the corner shop and not a carefully planned excursion in your carefully planned schedule of rest and exercise.

What the heck... Here I am weeks, no, months later and smack in the middle of one of these scenarios I never thought could happen to plain old me. Seriously ill, heavy medication, potentially debilitating, all the drama of a bad opera and I am the diva. Out of the blue, no, not really: out of a long time lingering underlying malaise, the autoimmune disorder, one catch phrase of 21st century medicine. Getting my head around it is quite a job. Panic, shakes, sleepless nights and the little bitsy hope that it's a joke or at least it's a mild case. yes, that's it, a mild case. Lucky me, found out in time before serious organ damage, irreperable damage set in. Lucky, I hope hope hope.

Three months of what?

So what did it? I fell, actually I was knocked to the ground early one morning. Hazy memory. Weird feeling, stiff and aching, not quite well. Back to bed thinking what if something is not ok? Back to sleep, back to work. Laugh about it.

The next day my left ear is full, full of what? Noise? Water? Kind of full, want to blow my nose, clear it, jiggle my finger in it. Odd. Gets worse, develops into some sort of amplifier sending outside noises into my head at a higher volume. Wait a minute: I know this! Happened before, long time ago, juggling demanding job, childcare, social commitments and various challenges. Out for a week with a drug called serc. Dr Oliver said we don't know why it works and how it works but it works, and so it did. Then again, when, four, five years ago cycling through a massive heatwave, 50+ km/day, arriving in Dresden at midday, maybe too much coffee, no aircon at the hotel, not enough water, heavy thunder at night and next morning my left ear sends Micky Mouse tweets instead of voices, all outside noises boom around inside my head. Abandon the bike and off to a specialist - this always happens on weekends! - at the local university. Hearing ok, maybe stress, take these pills, no coffee, rest a bit and stay out of stress and heat. Two days later I am on top of the world again and all is well. My Dresden adventure.
Back to now, or back to early Sept: A weekend of noises inside my head amplified through my left ear send me to the ENT specialist on Monday who found nothing, told me it's safe to get on with life as usual. But how with such a noise level inside and outside. I decide to stay home for the rest of the week.