feeling a bit snappy

Pushing along. I am climbing mountains. It feels like it. Every day. So now they tell me that cutting down the cortisone after almost ten years does produce symptoms such as all the shit that is going on. Now! Seriously. There is me learning about the cortisol metabolism and how cortisone fits in and the adrenal glands and, wait for it, adrenal fatigue. Brilliant, isn't it, that there's a name for almost everything which feels great for a while until you realise it doesn't matter and certainly is of no help. None whatsoever.

Anyway, it could last for about 12 months, they said. And we all know that 12 months is one whole year. But, they said, it comes and goes. Ah sure. Doesn't everything. Come and go.

Cutting down the cortisone has now become my mission in life. I have a chart drawn. I am keeping a cortisone tapering diary and I am the best pupil in the school of cortisone tapering the young and well-dressed immunologist has ever had. He in his pretty argyle socks.

And, in the words of a learned and sceptical friend, if it all goes sideways, everybody'll know why and let them pick up the pieces then. Well-dressed or not.

There are bigger things to concentrate on. It rained! One whole day and most of the night. That was weird and wonderful. The word lush comes back into use. But with caution.

The larger family is assembling in my father's garden on the weekend. Instead of coming out in a rash, as some would at the the thought of 17 people talking at the top of their voices pretending to be close, I woke up with vertigo in the early hours and have been spending a considerable amount of time today dealing with seasickness and the various ways this causes voiding of half digested food stuff. Somehow I will get to sit in my father's garden eventually, R can do the driving, and once we arrive I could hide somewhere in a tree. Or under one.

After that, we are going to the sea side. At least it's booked. That's the plan. Let's not think of what could go wrong. In other words, I am on holiday. My boss suggested I take a rest. Very funny.

In an effort to not lose sight of the bigger picture, to avoid getting lost in too much self pity, and to keep the mind occupied during sleepless hours, I have listened to episodes from the Awake at Night podcast (https://www.unhcr.org/awakeatnight/) where "listeners will join UNHCR’s communications chief, Melissa Fleming, in personal conversations with an array of humanitarian workers, and learn what drives them to risk their own lives protecting and assisting people displaced by war". It's strangely uplifting, reminding me of the fact that there are good people everywhere.
 
I leave you with another sign of hope and happiness.

Trevor Mallard, New Zealand's House of Representatives speaker, bottle feeding Mr Tāmati Coffey's baby while he presided over a debate. Mr Coffey is an elected politician and is married to Mr Tim Smith and this is their son Tūtānekai Smith-Coffey.

Things have not improved overnight as hoped. Changed, yes, certainly, and unfortunately. There is seemingly no end to the stuff that can pop out of my box of surprises.  I am now back in the all too familiar territory of heavy vertigo (plus sudden onset sciatica or what the heck), only this time it's not the world that's turning but me who is tottering and reeling like a common and garden drunk towards the left when I don't watch myself.  After the first 24 weird hours, R dragged me to the GP this morning where we debated a trip to A&E with all that this entails. In the end, we decided on the old familiar wait and see method with strict instructions when to call an ambulance. This will pass, no doubt, I am far more confident than the rest of them.

Because, I have learned that I need to live all I can because it would be a mistake not to (thank you Henry James).  But I have learned that pity and being considered poorly gets massively in the way.
What makes it extra hard sometimes almost always is that I seem to have to defend my needs and hopes and wishes in the face of my diagnosis. The labels chronic and reduced life expectancy are a powerful and nasty curse. As a result, I need to be more convincing about my goals than I needed to be while I was well. But that was years and years ago. Maybe I am embellishing here. I have never been superwoman.

In my ideal world, illness would be just another characteristic of an individual and not the one that everybody thinks as the defining one. Being ill has forced me to figure out a whole new set of skills and some of these feel like obstacles that a healthy society has created to put me in my place.
I get it, though. I used to be that healthy person dishing out advice on diet and lifestyle, impatiently waiting - if at all - for someone a bit slower and more out of breath, never considering how medical appointments and treatments can rule your life.
Don't get me wrong, I love advice and pity can be a balm on a hard day. Unless when it clangs, when it's all there is - seemingly. (I am probably getting this wrong.)

Rest assured. Occasionally, I reach a stage where I am beginning to realise that we are all struggling, healthy or ill. And that health - whatever we think it is - has little to do with.

Totally unrelated, we welcomed two small lemon trees (one Sicilian, one Meyer) and a sturdy feijoa tree to the garden commune yesterday.

elephants in the forest

First, I think it's a scam. Then I want to shout. Don't. No, hey wait! But my voice doesn't seem to work and I am sucked out through the open door of the plane and now I am in free fall, rapidly spinning through cold air, hot air, sluggish fog, icy wind, my tears freezing on my cheeks, my stomach churning in protest, shrill deafening noises ring in my ears, the air smells of burning pine needles.
But suddenly I can see my hand resting on the handlebars of my bicycle, the forest in all its deep greens around me, the sun is breaking through a small opening and shines straight onto a small pond, birds singing around me. I don't know where I am or what has happened and I feel the noise growing again so I take a quick picture. Frogspawn on an almost dried up forest pond.

How calm, how beautiful, summer in the forest, I try and convince myself. But now a herd of noisy elephants is racing towards me, I can taste the dust on my lips already and I fall on my knees, cradling my head.
Later on, while we watch the slow drip of a massive cortisone infusion, the doctor still cannot believe me: you came here on your bicycle? I must have, I can see it locked outside the surgery.
And much later, after R has smoothed the sheets, opened the windows wide to let in the sweet evening air, after I tried unsuccessfully to keep down a bit of dry toast, panic seizes me like a force I thought I never knew.

Looks like this is becoming an annual event, another double vertigo attack with the odd fever spike, shivers and the expected sea sickness. And sweet heavens, the nausea. Wow.

Almost to the day a year since the last big one. I feel so very sorry for myself. Very sorry. And I would bang my head against the wall if only that would help. Instead, I stagger around the house and  that heavenly garden, lilacs, tulips, wisteria, apple blossoms. No cats. My first spring without cats.

At least now I can leaf through last year's diary and count the days I was sick with it last year (16 days) and also that I waited almost a week before I went for the ENT appointment after the cortisone spike brought feck all relief. This time, I am not even starting on that stuff. Well, not yet. This time round, I'll do the ENT before the immunologist. Variety is the spice of life they say.


Does it help to realise that there are worse things happening in the world? I wish it would.
I wish I could see how insignificant my little portion of misery is in comparison.  I fail.

It's getting quite blustery and hot out there. The cat has come in. Big news. The vertigo has settled in nicely, most of the time I am so seasick I want to puke. In a bright spark of insight I decided to get myself to an ENT exam this afternoon. And now I am entertaining the wild notion that all will be well. My prince will come and drive me there as I am prone to toppling over when I am not doing my drunken walk. 

Until then I shall wander into the basement and slowly move all of our precious valuable junk out of harm's way because there is a storm coming with prospects of very heavy downpour and as we all well know by now this could mean flooding. Not from a swollen river bursting its banks about half a mile down the road but from too much rain pushing its way through the sodden ground through the basement walls and up the drains. If it happens it will be the third time in four years and we still won't connect the dots. If it doesn't happen, well, life goes on and we can pretend for a while longer that this is just a bit of weather.

What a morning, the sunlight so brilliant, the sky wide open and ancient, never ending deep blue. Butterflies, sleeping cat, a mild breeze, the midday heat only a guess away.

Slowly, carefully, my balance has been returning. All that has come off the moorings and has been sliding around inside my head is slowly settling. As I put one step in front of the other I can feel once again (wooden floor, smooth patio stones, dewy grass) how solid it all is. I am not quite there yet, but my center is back, carefully, tenderly, allowing me to stand and bend and reach without falling or bumping into walls.

S just called from the road, they are heading down to the big lake, we will be sailing on Sunday, she says and I can hear the delight in her voice. My water baby.

Once in a while when we were living in paradise we would sneak into the posh tourist hotels with their big pools lit up after sunset and music tinkling from hidden speakers, sipping rum cocktails at a bar made out of tropical wood and some shiny materials from far away, watching our little six year old swim, S and another girl her age. Watching the expensive tourists watching our kids swim, one with blond curls, one with dark curls, diving in at one end, almost crossing the entire length of blue water, brightly lit from below, before simultaneously lifting their shiny wet heads, laughing and jumping up at the other end, diving in again and back and forth in a beautiful dance under water. Two mermaids, two sleek dolphins perfectly matched, deliriously happy and healthy.

as if

The night before last. The volcano erupted. A little bit. 

Some time back, one of these experts examining bits of me while I - foolishly - opened my soul and with it all my hopes, one of these healthy medical experts told me in his expert voice that he would be inclined to compare heavy vertigo of sudden onset to an epileptic fit. Not that he ever experienced vertigo himself.

Not that it really matters.

The night before last I woke up suddenly from a very deep sleep and the darkness around me was turning. This is such a unique sensation, like falling through space. As if I'd know what that feels like, anyway. Flat out on my bed. At first, I curiously watched the little strips of light from the street lamps that are coming in through the blinds move rapidly across the ceiling and speeding faster and faster whenever I turned my head this way and that.

As I tried to sit up, a heavy wave of nausea washed over me from somewhere behind the bed and I carefully groped my way along the bedroom wall to the bathroom and back. Stupidly noting the time, 4:03, as if it was something crucial.

Eventually, of course, panic seized me. Shit, shit, shit, I whispered holding onto R's sleeping body. 

Just then the dawn chorus set in and obviously, I started to fret about my hearing, which was perfectly ok. And I decided to listen to all this birdsong as if it was the last time. Which is very melodramatic because the top notch expert had told me that with my drug regimen deafness was highly unlikely now.

When I decided to get up some hours later, the world was at rest again. My head was throbbing and the familiar pressure noises were hissing inside my head. Felt as if I had just crossed from Dun Laoghaire to Holyhead in a winter storm, which I have done in the past more than once, each time expecting to die from sea sickness. And yesterday was such a lovely day, summer, lilac flowering everywhere, R brought fresh green asparagus and the first local strawberries back from the farmer's market. I sat in the deck chair watching him pot the geraniums and the fuchsia and replace some of the raspberries, the cat curled up on the hot stones under the little olive tree and in the evening after dinner on the patio we watched the bats flying low. 

And the phone rang to tell us that a little baby boy was born into the family in Ireland, one of the kids I still see in my mind's eye forever running along the beach. climbing garden walls and pinching grandad's flowers, now a young father. 

Today my muscles are aching as if I'd climbed a mountain. Muscles in my neck and face are slowly relaxing. I no longer have to hold onto the walls. Keeping my fingers crossed.

Saturday

Late this morning I cycled into BG and walked around for a little while, what a surprisingly mild day. Weird looking Xmas decorations here and there. I sat down at an outside table of the new French bakery with A and we had coffee in those big wide bowls and talked for almost two hours until our hands were cold and time was up. After we said good bye I quickly ran over to the whole food shop to get some tangerines and coconut milk and when I bent down to pull up my bicycle lock vertigo hit me like someone pushing me from behind. It got a bit better once I was upright again and somehow I cycled home in one piece. I sat down on the brown sofa and watched the embroidery on the Rajasthani wall hanging move rapidly to the left while my heart was skipping and my wonky ear started roaring intermittently. Too much coffee, said my prince and I took a deep breath.

I didn't move from the sofa for a couple of hours, eating tangerines and somehow I never freaked out and then I managed to make a lovely dinner - if I may say so - using the gorgeous little parsnips and celeriac that R harvested this morning (onion, parsnip, celeriac, sauteed in olive oil, some stock, crushed garlic, fresh rosemary, simmer for a while, mash a bit, but not too much, add some chopped  black olives and parsley before serving) and now I just finished watching Patti Smith Dream of Life on TV, back on my sofa. And I got all weepy about the fact that I will never ever again be able to go to a live concert which is bullshit because even before I got ill I hadn't been to one for ages and never felt tempted, too pricey, too loud and too late and so on. The last one was that UN gig with Bob Geldof and Hugh Masekela which anyway was for free because I did all that translation work for the  alternative summit and I remember checking my watch and yawning for goodnesssake.

But anyway, went back in my mind to the time when I first heard Patti Smith in Sylvia's kitchen in Heidelberg in the days when I rolled my own fags and had long long hair and we talked about travelling to Saintes-Marie-de-la-Mer next weekend or so, no big deal, only we never did. We were so cool and so broke. And Patti Smith, oh my, oh well!

vertigo

Looking back I should have seen this coming. But that's the thing about hindsight, it's so bloody useless.

Last Sunday, the alarm bells (hindsight!) were pretty loud and clear when we returned from a shortish cycle along the river which sent me puffing and shaking onto the nearest bench before I was able to make it home. I was crawling through the next couple of days battling increasing nausea and exhaustion. Tuesday drove down to W to see Dr B (pre-arranged check-up) and back along the river with a lunch break in a tourist spot surrounded by baffled British school kids on exchange to picturesque mediaeval towns and Roman remains. On Thur another visit from the mother of all headaches and shrill alarm bells (hindsight!). After a rough night with shivers and hot flashes and bouts of heavy nausea the world started to spin just after breakfast and continued to do so for most of the day. Today, my head feels so tender and sore, every movement starts a series of spins and I feel as if I'm under water.

Wow, so what the fuck is this. I have done everything according to the books, doctors! And it feels I am back at square one. Dr K suggests to contact the clinic in W if things don't improve by next week.

Wait, get this straight: I have had vertigo attacks for years. Granted, rarely as heavy as this one (or the one last September or the one last February) but it's nothing new. Sit it out, move with care, but move and bear with it. And be bored.

And: My hearing is fine!!!!

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.