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

looking at a photograph from 1989

If you only see the waves you may overlook the water. But practising mindfulness you can touch the water in the waves. When you have learnt to touch the water the coming and going of the waves doesn't matter any more. Birth and death of the waves are no longer interesting. Fear will pass. You will no longer worry about the beginning or the end of a wave or that one wave is higher or deeper than another. You can let go of these thoughts because you have touched the water. (from the wise man)

This picture was taken on Easter Sunday late afternoon. I had just finished reading John Le Carre's Perfect Spy, while R was snorkeling somewhere to the left and behind me S was trying to get the giant old tortoise to follow her dangling a leaf.

A perfectly happy day.

11 months

Around this time last year I had just been through three days of FUO (fever of unknown origin) and once it was clear that I had not picked up the H1N1 virus during my trip to London earlier in July 09 I did not waste any more thought on it. Never mind the fact that when I finished painting the grubby wall paper in the hall the next Saturday I was knackered for the entire Sunday, never mind the fact that in the following weeks all I managed to do after coming home from work was fall asleep in front of the TV, that visitors and outings tended to exhaust me and that I spent weekend afternoons fighting sleep, and that I was more than glad that others could do shopping and cooking.

What mattered to me was my daily adventure, my cycle race to work, setting off, winding my way through traffic so easily, what a delight, then the climb up on hairpin bends and the jubilant feeling of achievement 20 min later up on top, the slow spin onwards through the forest, the quick stop at the viewing point, taking my daily picture of the view, a short breathing meditation on the bench under the massive birch tree and on to my office for the next 9 hrs.

I ignored every symptom that may have stared me in the face. In fact, as long as I could manage this lovely trip every morning, surely I must be ok?

Eventually, I collapsed.

Eleven months ago.

The likelihood that I will recover sufficiently to go back to work is very very slight. So slight that as of today I have stopped considering it.

Connemara 1979

I had been on the road for four days on trains and boats and hitchhiking. It was a clear sunny Saturday evening when I walked around the corner with the sea behind me and the high fuchsia hedges on both sides of the road. There was not much to this village, not like today with its big supermarket and fancy bistro with customer parking and outside seating. A cross road, two pubs, a couple of cottages, the run-down ruin of the former industrial school.

Where to next? I walk up to this good looking young guy trying to catch a lift on the corner but he only speaks French and we shrug shoulders and smile.

In front of the first pub, a scruffy looking young guy with a dishevelled beard is sorting through the panniers of his bicycle and he takes a good look at me. Before I can ask him for directions, the pub door opens and an elderly man comes out followed by two young women with backpacks just like me. He tells me to come along if I am also looking for the workcamp. Next, we are packed into his car and driving up a steep hill. Who the heck is that? says the driver and I turn around to watch the bearded guy following as fast as he can on his bicycle.

Today is his birthday. I have made him 30 birthday cakes so far but today I am not able to. We'll do it another day, he says and smiles.

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!!!!

this is the rub

What they don't tell you when you are diagnosed with a chronic autoimmune disease:

You will never return to your normal life as you remember
You will grieve for this life like hell
You will take ages to come to terms with this loss
You will make it soo hard for yourself to accept this new life
You will be lonely
You will wallow in selfpity a lot of the time

reading Susie Orbach

"Everywhere we see evidence of the search for a body, disguised as preoccupation, health concern or moral endeavour. Almost everyone has a rhetoric about trying to do right by their body which reveals a concern that the body is not at all all right as it is and that the body is a suitable, indeed an appropriate, focus for our malaise, aspiration and energy."

happiness

Went into town yesterday pretending to be just healthy: library, coffee, some shopping, lots of stops sitting down, gorgeous lunch in BGout upstairs as far away from the crowds as possible. Exhausted but happy to be back in the world. Asked R what he wants for his b'day next week and he said: you to be happy and well again. I could not speak for some time.

high summer

It has become really really hot. After a short trip (on bicycle!!) to the farmers market and a quick cup of coffee we buried ourselves inside the shuttered and closed house. In between rests and rehydration sessions I tried to help R finish up the renovations downstairs.

At midnight temps were still around 30°C and I was stretched out on the patio stones (which were almost as hot as an electric blanket) looking at the stars. Searching for cool and restful sleep we moved around the house with blankets and pillows meeting up here and there. Eventually I slept surprisingly well in the laundry with the door to the garden wide open, vaguely registering the heavy thunderstorm sometime in the early hours and if any stray cats came to visit I never noticed.

There was a refreshing breeze for a while this morning but I almost failed to notice as I was battling waves of nausea and worsening of various symptoms - all the time trying to avoid being hit by this oncoming train called panic. I had a good (?) cry and tried to sort myself out, as in what have we got here: side effects of MTX, maybe a little flare up due to the heat, tension, blocked nose, need to drink more, calm down, breathing, breathing, breathing... and as it happened before this image of A came to mind battling viral encephalitis after her bone marrow transplant thinking of her small daughters and I feel such a miserable pityful whimp - and elated because I am so much alive. So much alive. So much alive.

Three years ago I sat outside just like tonight, daylight fading, the neighbourhood getting quiet, the bat doing its rounds from the Douglas fir, the occasional tuktuktuk from a boat or the sound of trains from the other side of the river.
Only then I had just had a small pice of bone clipped off my upper right jaw, after five previous oral surgery adventures in the space of 12 weeks and was going round the bend with pain.

most of the time

Most of the time now I feel calm. Really? Most of the time? It feels like it. I am calming myself, my environment calms me, the gorgeous summer, sitting in the garden reading, dozing, watching birds, playing with the cat, picking fruit. Later on a light lunch on the patio... the day meanders on.

Most of the time now I say to my body: OK, show me what you are up to, what you need, let me understand what's going on. It's your turn. I have racked my brain, worried and panicked through countless nights and days unable to sleep or eat. I give up. Or rather: I give in.

I've been thinking of the five stages of grief (Kübler-Ross) and it feels as if I have been going through the first four (denial, anger, bargaining and depression) all at the same time at full force. I am still lingering with anger and obviously lots of bargaining (like: as long as I don't lose my hearing and my eyesight, I'll suffer the vertigo and the roaring in my head, wait, no, take away the roaring as well please) but there is no 5 waiting for me (acceptance) and well, let's see.

Sunday drive

We drove into the hills yesterday and I managed to go for a short walk - nervously at first, after all we used to go for proper hikes and here I  was resting after the first five minutes and we carefully turned back after a short distance. But what a joy! I had this urge to open my arms wide all the time whispering the names of plants and trees as I walked past: buttercup, hazel, sorrel, red clover, nettles, dandelion...

Midsummer

The thought that the days are once again getting longer initially fills me with panic.
But, that much I have learnt in these last nine months: Panic comes and goes, it has no hold over me. Well, at least not now with summer out there and seven weeks of summer break for R ahead of us.
I am slowly learning to not fear the future, to let it happen. I have accepted a bit of this life. A bit only, mind you. There is too much to fear, so I am doing bits. Bits of work, bits of gardening, bits of cooking, bits of cycling, bits of weeping, bits of laughter, bits of distraction and so on.

grateful

At the risk of coming across all esoteric or religious - and I am neither - I still feel this urge to note that at the moment I feel so incredibly grateful. Grateful for this slow unfolding summer, the abundance of fruit and blossoms, for R on my side, his patience and confidence, for lovely S far away and yet so close with her whirlwind ideas, for gentle N who despite all her personal upheavals has made the last 6 weeks so much easier, for being able to cycle down to the river every so often to watch this magnificent force of water flowing towards the sea, for pleasant dinners on the patio, funny or moving or crappy DVDs to watch in company, all the books to read and discover, to be able to sleep most nights, listening to birdsong when I wake in the mornings...

from the wise man

If you are afraid of fear it can overwhelm you. But if you invite it calmly and smile at it with mindfulness it will abate.


When we panic we do not know what to do. Through breathing, smiling and giving we will find a solution.

other things

Our big cat is dead, she was put down after another seizure kind of event and is buried at the bottom of the garden. What a relief!

Tax rebate has arrived! My first success story since getting sick as I did the tax returns when I things were really shitty.


The garden is paradise. R starts his summer break in two weeks.

doubt

Almost every day  there is at least one moment of doubt whether this autoimmune diagnosis is valid. While I am on this roller coaster ride and long forgotten (i.e. absent for a couple of days) symptoms come back seemingly out of nowhere to viciously attack me, my imagination runs wild and the dreaded "what if it's..." pops up uninvited in my head screaming at me, especially at night in our lovely quiet neighbourhood without a noisy car, bus, train, plane, unruly cats or late night pedestrian to distract me.

So I juggle likely explanations about drug side effects and delayed efficacy, the hot weather, wrong food for dinner, menopause etc. around my head until I eventually fall asleep.

For some time now headaches have come and gone, increasing in intensity and a good day now is when the panadol kicks in which it rarely does. Yesterday all I could do was walk up and down in the garden trying to distract myself counting my breath, the roses in bloom and picking the first ripe raspberries - to no avail. In the end I remembered that one patient in my room at the WKH in November told me that she always drinks an espresso for her headache. And it did help  but I felt/feel like shit nevertheless. Doctors now want me to monitor time and strength etc. of headaches which obviously sends me into a fizz as I try to figure out why they are concerned.

And there I was not too long ago telling myself how lucky I am that I don't  have migraines. Whatever hit me yesterday was migraines' big sister.

The thought that I have been carrying this noisy dizzy vertigo exhaustion in my head and body for over nine months now (half time of my sick benefit) and that in less than three months ... fills me with panic and I end up weeping for my losses: working, cycling, walking, running, dancing, careless and thoughtless daily activities like boring household. Oh shit. This can't be it. No way. Come on, think of something. Quick.

hope and wait

In early autumn 1981, I spent a morning with a wild group of new agey feminists in the basement of a yoga school near Fitzwilliam Square.  We wanted to start a health group and in particular we wanted to promote natural childbirth as a sort of radical right, all very theoretical and somewhat militant (the early 80s...).

When I left home that morning I was a healthy young woman, slightly hippie-ish, broke obviously, full of wild ideas and ideals, absolutely none of them involving motherhood, and mainly interested in connecting with other likeminded women ready to shake up the establishment.

When I got home that night I just knew that I wanted to get pregnant. Nothing seemed more important or urgent. And there was no discussion, none of the predictable arguments from my feminist friends could change my plan. I had to work hard on convincing R and I mean hard, including one very rough and stormy sleepless night on Inishmore of all places.

That done I naively thought things would sort of happen overnight.

Haha. In fact what followed was a couple of months of waiting and hoping and dashing of hopes and getting to know physical signs or rather imagining non-existent physical signs and when it finally did happen there was none of that romantic glow and shiny eyes and whatever softness of body some women-who-know tried to convince me of.

But that's another story and I am getting carried away here.

It's the waiting bit and the hoping bit that I am reexperiencing these days. I don't  want to dwell on it because it could all be back to square one tomorrow.

But as I drove back from BG this afternoon, Kate Bush blurted out of the car radio as I was driving through the sunny tree-lined streets and I turned up the volume and - loudly - sang along and grinned almost happily at the poor unfortunate teenagers at the traffic lights who had to witness this crazy scene.

Rain

After three days of heat a thunder storm with massive rain this afternoon. The smell of rain on the hot patio stones overwhelming. Roses and lavender in bloom, sage and estragon almost up to my shoulders, a handful of plums on the little tree, first raspberries blushing, delphinium ready to blossom, taller than me. Strawberries next week if the sun keeps up. Rucola and lettuce ready for harvest.

stop

I must stop this childish hope for a remission or even recovery. When the doctors tell me that I will get better - probably - they are as much in the dark as the next person. At least Dr. K. doesn't say it any longer. This morning after he took my blood he encouraged me to get some physiotherapy not because it could bring about anything related to recovery but simply because it will allow me to get out of this passive state of waiting and enduring the roller coaster ride of my overactive immune system.

What I need to concentrate on is to accept the life I am in now. I must stop this nonsense of hoping and waiting. Accept that I am unable to get back to my job, my work, my lovely office. Accept that I may never work again, never go on long cycle rides again, the lot. Shit, I had a great life so far, I have been around and had many adventures. So let's try and close this chapter and figure out a way to handle this whatshallwecallit mess.

Last Friday, with a lot of trepidation, I let R persuade me to a meal in a restaurant. We compromised on an outside table where I could rest my head against the wall and we did not stay longer than necessary. But I felt high as a kite afterwards. Today, I am so shaky and ill, this would be unimaginable. So maybe these will be the high points in my life now: to be able to spend an hour in a restaurant without falling apart. It's nothing compared to cycling the Rhone valley or hiking through Lo Zingaro - whatever made me think life could go on and on like that?

Incapacitated

It's like a curse. Whenever I have a good day or even a couple of goodish days there is a real crash like today.
The hardest thing about it is that during these couple of goodish days I cannot help but feel hopeful. When things are easier, when I can spend a part of my day actually moving about and doing trivial stuff like cooking dinner, sweeping the patio or even cycle around the block (not all in one day)- life becomes so utterly wonderful and easy and everybody is simply lovely and I can see and smell and cherish...
And then I battle through the night and get up with this roaring heavy head, my balance is out and I am shaking and shivering, nauseous and the thought that less than 24 hours ago I was out there smiling at life completely floors me.
So now my head is crowded with doubt and worry: Hasn't this happened before when drug no 1 was lowered to this level? Is drug no 2 ever going to work? What else is going on? Was I too active?
The worst is that no one, absolutely no one will be able to answer this. What have I done to get this crappy disease? Couldn't it be something a bit less systemic, a bit more specific?
Autoimmune disorders strike women three times more than men. Not fair! Not fair at all.

Running upstairs

I heard the phone while I was in the laundry downstairs and only when I spoke into the receiver upstairs in the kitchen did I realise that I must have run upstairs.
I RAN UPSTAIRS!
There is life left inside you after all, old girl!

paradise

We arrived in paradise early on a Sunday morning after a long and exhausting flight. There was not much of an airport, we stepped down right onto the tarmac as the thick moist air took my breath away and sweat started to trickle down my back. The heat seemed to go right through to my core, my joints loosened up, my muscles relaxed and for the next three years I felt languidly alive throughout all of my pores right down to my fingertips and hair-ends.

In the first cold and damp winter back in Europe, I would often lower my arms into the bathtub where S was messing about before bed time and close my eyes and try to think myself back to this hot comforting feeling. In the mornings waiting on the platform at Seapoint sheltering from the heavy cold wind blowing in from the bay listening to Paul Simon through my headphones singing about effortless music from the Cameroons I asked myself why we came back to this place where pale people dressed in shoddy black and hurried through windy city streets catching smelly busses with dirty windows.

That first Sunday morning was a shock to my system. We had read about paradise, its history and politics, traditions, food, tourism, etc. poured over all the pictures and maps we could find, met people who had been there and who told us about it. But nothing could prepare me for the intense light, the contrasts of thick greenery, shiny rocks, deep blue sky, the shimmering turquoise ocean, the frangipani and jacaranda smells, the Sunday morning noises and - black people everywhere.

There I was, self-proclaimed feminist, unionist, anti-apartheid activist with an overblown and pompous agenda surprised by the fact that – yes indeed – all people in paradise appeared to be black. At first it was hard to recognise individuals, to see beyond the sea of black faces. Many weeks later I found myself staring at this white hand holding onto the handrail in a packed bus veering around a bend thinking what a strange skin colour and realising with a jolt that I was staring at my own hand.
Arriving at Heathrow shivering and cold almost three years later confronted by a mass of pale unhealthy looking faces, I was equally surprised and for a while unable to distinguish individual features.

my mother

When I was six or seven years old and in primary school about five of us used to meet in the mornings to cycle to school together. Well, this was in the "good old days" when parents just opened the front doors and let their kids head off into the day.

At the school the bicycles were parked on racks under a large corrugated sheet roof. One morning someone's bicycle got damaged, nothing dramatic but obviously intentionally. It quickly became a serious issue around school and in class. We were all grilled and I told the teacher that I saw soandso do it. Did I see it myself? Did someone tell me? Did I imagine it? I cannot say. But I still remember the strong feeling of being convinced that I did the right thing.

Back home in the afternoon, there were phone calls. My mother was back and forth calling me inside, asking me again and again. What did I say, what did I see and how angry this other kid's mother was at me because I clearly was lying. This went on well into the evening. My father could not be bothered to get involved, while at this stage several mothers had phoned, called to the house in person and generally cornered my mother who in turn got more and more mad at me for messing things up with the neighbourhood.

At some stage right before bed time I could not stand it any longer and broke down sobbing and told her that maybe I did not see it after all? She was so relieved she dropped the towel she was using to dry my little brother and ran to the phone to call off the posse getting ready to march on our house.

The next day in the school yard at break time the boy I maybe had seen damaging the bicycle threw a stone in my face. My mother was mad once again because she had to take me in the car to get my glasses fixed.

The small scar next to my right eye took several years to heal.

A.

She works in the same building, on my floor. We talked at the staff Xmas party two years ago. She cycles to work along some of my route and so we exchanged our delight with the chestnut trees and the snow and the horses and cycling through a mature forest after work. Occasionally, she brought one or both of her (pre-)teenage daughters to work.

Last week she phoned me. She had been asking about me having not seen me around for a while and was told I had something serious.

She told me that eight years ago she was diagnosed with cancer. That she spent months in the same clinic I was in after Easter. She spoke about isolation wards, face masks, multiple infections after chemotherapy, hoping and waiting for a bone marrow donor, her five years of treatment and her annual check up days back at the clinic. She told me about her fear of big crowds, of infections, her lack of energy that renders her unable to work fulltime and of her joy of being alive.

She told me that I will get better.

Wednesday evenings

Every Wednesday evening for the past three weeks and for the foreseeable future just before the main evening news start on TV I wash my hands really well, tear two little sachets with sterile wipes, twist open the cap of the injection set, screw on the needle and remove the safety cover. I clean a bit of skin just below and to the right from my belly button with the first sterile wipe, stretch it between index finger and thumb of my left hand, take a deep breath and with my right hand insert that fine needle into my skin and push down the lever - or what ever it's called, must get the proper terminology eventually - to inject my weekly dose of MTX. Next, I use the second sterile wipe to clean any spills as I've been told they can cause skin irritation. I pat my belly and lean back and hope for the best.

Needless to say I never imagined I would end up doing this, injecting heavy duty medication with a list of potentially life threatening side effects into me AND feel grateful for being able to do this.

One restless night later: What went fairly well for three weeks appears to bring about fairly unsettling side effects. I feel as if an electric current is running through me. Another thing to bear out.

father

This is the strangest thing that being ill has brought me. He phones, he drives long long distances at the drop of a hat to bring me to and from doctors and hospitals. He messes about with car seats and air conditioning and a selection of cds to make the car journeys as enjoyable as he thinks he can. He gives me his strange version of pep talk and shows sincere concern and affection. I feel I never met this man before.
And even weirder is the fact that I cherish it all.

Expectation

Like a child before Xmas I wake every morning hoping it's over. And after the first joyful moments of expectation I give in and settle for relief that at least I am not worse or that I did have a good couple of hours sleep or a visitor to look forward to.
But hey! At least I am not worse.

Little trick

Whenever things get too much, when the symptoms become too heavy to continue any semblance of active life and I am reduced to breathing through a wave of headsplitting pressure, roaring, shivering... and my fear and panic I have started to comfort myself with the thought that at least I don't have cancer or cluster headaches, migraines, multiple sclerosis or whatever gruesome ailments comes to mind.
It doesn't really work. I am too fucking mad and self centered.
Well, I'll try it for a while.

let go of any striving

background noise inside my head for some time now - trying to recognize the voice, remember where I heard it first
Yoga teacher on video - many years ago - calm

In other words: get a grip. Spent a good bit of the day attempting to work, proofreading various manuscripts, dealing with hepatocellular carcinoma and end stage liver disease. Gosh, I am soo healthy. Like shit.

The invisible ones

I can see you now. The young woman walking with crutches, skinny and slow, pale face concentrating on the next step. The handsome man in his white jeans, bright Tshirt and fancy earring, he moves with a slow limp, one leg completely stiff. That women over there with her swollen face and ankles, obviously short of breath and on some medication, carefully negotiating her trolly with the shopping, desperate to get home. And I am thinking how sorry I feel that they may never be able to go on one of my long walks through the hills and the gorgeous forest down south from here. May never cycle along this wonderful river on a sunny May evening with the soft wind in your face and the boats slowly tutting along beside you. And then it hits me:
Neither may you. Well, certainly not now, not for the last eight months, you haven't and there is nothing but the faintest hope to think you may ever again be able to.

Mantra, mantra quick:

The new drug takes 4-8 weeks to work, I am on week two.
The body is a system always striving for health.
I can hear again.
My eyes are fine.
Impermanence, everything changes.

Listening to your body?

This is the advice I get from all sides. What crap! I have been listening so hard it drives me mad. The messages are utterly chaotic and confusing. What is my body telling me? Drivel, really. Move, get up, clear your head, no, no, lie down, rest, stay calm. What is that shaking body telling me? This roaring head, this pressure in my ears, this racing heart? This feeling of concussion with flu?

Last Wed I got the second shot of the new drug No 2 and Thur and Fri WERE better days. Yesterday started out somehwat slower and heavier and by early afternoon I was moreless flat out. Got mad and picked myself up to cut the lawn and cycled down to the river fuelled by such fury and desire it almost felt like happiness, while all the time the energy was draining out of me like water from an open tap. The rest of the evening was a flurry haze of shaking and shivering watching TV and drinking herb tea. Last night was not a kind one and the morning confirmed what I had been running away from yesterday.

All I am left with is the hope that once again things may get a bit better.

Energy

The wise man told me today:
Unpleasant feelings like fear and anger are also sources of energy. Therefore, we should not suppress fear and anger but stay in touch with them through our breathing and accept them in the knowledge that they are mental and physical energies.

Drugs

Drug No 1 is supposedly giving me a moon face and generally make me gain weight - hasn't happened yet but who knows. However, drug No 2 is reducing my appetite and in most cases results in weight loss. Noticed that already.
While drug No 1 is causing my facial hair to grow - I have a slight blond beard by now -, drug No 2 makes my hair fall out, my brush and comb are full of hair and so is the drain of the shower. There is still plenty of hair to go.
Then there is drug No 3 to counteract the gastritis and other digestive disturbances due to drugs No 1 and 2 and for the really bad nausea, there is drug No 4, but only occasionally. Twice a day I take drug No 5 to counteract pontential osteoporosis due to drug No 1 and then there are the drops and lubricants for the very dry eyes and nostrils due to drugs No 1-1000000. Almost forgot drug No 6, to be taken 12 hours after the weekly injection of drug No 2. An innocent little yellow pill that is.
Every night I sit down like a good little nurse and dole out the stuff into this neat box with separate compartments and put it beside the bed before I go to sleep so that I take drug No 1 at the proper time of my circadian cycle. It's like playing hospital.

endurance

Name of that unfortunate ship stuck in polar pack ice. Shrink no 2 told me to work on endurance. Said I was too used to hold the strings, to order and direct and organise and cope but not experienced in enduring. She also said it could be due to experiencing significant helplessness as a child. Huh? Obviously, but do I want to travel down that road - again?
But enduring, that's a challenge. Reminds me of K explaining to me how a panic attack works, how the body can only sustain panic for a limited period of time (20 min) before the adrenaline rush slows down and the body simply has to calm down again.

hospital no 4

The volcanic ash plume is hovering somewhere above, my cat has gone blind and spends her days calling for me - this evening I found her stuck in the bookshelves below the Times Atlas of the World about to be crushed. She silently struggled to escape with her blind face turned towards the wall.

I spent last week in hospital no 4. My room mate was an elderly Turkish woman in much pain who spent her day and most of the night reading the Quran and some other holy book and praying every hour. Her German was poor but we found a way to communicate and she told me about her pilgrimage to Mecca and shared the delicious Turkish food that her visitors had delivered. Her cellphone ring tone was James Brown belting out "I feel good".

The hospital: doctors who understood my symptoms, careful and thourough examinations - a change of medication. Very detailed instructions and guidelines. Patience once again. My new friend is called methotrexate. We are only starting to get to know each other.

The chief doctor does not think I have Cogan's, but "only" autoimmune vasculitis and my ears were once again fine.

This morning I sat in yet another waiting room, this time to get my eyes checked because of possible autoimmune involvement and potential side effects from the medication. Dr F was brisk and informed and reassuring. My eyes are fine and she will look at them again in 10 weeks time. And she also reckons that my eyes are not at risk at all.
So far so good. Sitting in the waiting room I noticed how anxiety was expanding inside me like a bubble ready to burst. What is happening to me? Where is my cool? I have always been impatient - so what - but this is one step further. It is scary.
The Easter weekend was a struggle: symptoms, exhaustion, loss, despair - a wild mix and one hell of a ride. Why me?

back and forth?

I wonder. But no, something must be changing, I mean: something surely is changing, I am changing. Tiny baby steps, minute little shifts, something, for the love of whatever, change!

The last 10 or so days I felt I was getting worse. Was I? Am I? What is worse? Is worse just not getting better? Is worse my impatience, my panic, my fear, my too much listening to my symptoms? Or is it an actual physical sensation?
No, yes, it is the latter. The roaring, the pressure, the shivers, the aching ear, the hot red face... And UJ's mail about her experience with eerily similar symptoms. And other patients urging me in the past to carefully monitor my symptoms and to voice my concerns to the professionals at all times.
So today I faced my concerned and confused GP and phoned Dr. B who swiftly reset my drugs to a higher dose, just like that over the phone as in "let's try this out". And whoosh I am back to a higher dose with instructions on a much slower reduction procedure.

Last week I went to the shrink. Middle aged woman, a bit plump, nothing as grand or posh as Mrs S and no dramatic interior design scheme, no echo, no stukko ceiling, no big mirror. I felt pity, confused pity coming from her towards me. I hope I was wrong. She said very little, asked in the end whether I think I want to come again. Felt a bit as if she was hoping I would say no. But I must give her a try.

I want to rediscover my dignity. My graceful soul, my love of life, of living. I want to get through my day without fear again. I want to face the challenge. How?

spring

Down across the bottom of the garden I can watch a neighbour's forthysia about to blossom. The snowdrops are yesterday's news and so are the crocus. Today's star is the purple pulsatilla. The birds are very busy and my two elderly cats watch their hectic activity with envy. There are tiny dark leaves sprouting low on the valerian plant which must send out a strong message as cats in all shapes and colours come and rub their noses in it.

Last night was rotten. A heavy hand has been pressing onto my chest. Many times I woke with my mouth wide open and dry as a brick, gasping for air. There was no real sleep. Fear of suffocating.
Today is bitter. The roaring in my head howls out, the vice has been turned even tighter and my heart struggles along irregularly. My head is so very heavy and my teeth are chattering. I am nauseous. My hope is for a deep sleep tonight but I fear I'll jinx it if I write this.

This morning instead of breakfast I took down names and phone numbers of female psychosomatic experts within reasonable distance and phoned about 10, one after the other, looking for an appointment. This was urged by lovely Dr F yesterday. I left my name and number on numerous answerphones, got a couple of sorry-we're-full messages back and two appointments for next week of which I have to cancel one. And I have to postpone the ENR appointment again. I hate having to make these calls.

It's hard enough trying to get there.

It would be so great if someone could help me organise all this. It is such hard work.
Then again I try hard to convince myself: You are not as helpless as you think. You are stronger than you think you are. But it's hard. I want to fall back into a deep sleep for a long long time, switch off my mind and only take in glimpses, short presences, no more thinking please ever.

different normal

Some mornings, sometimes during the day, there is this fleeting sense that I will come out on the other side of this. Today was not such a morning but I think I worked my way steadily and bravely through this heavy black blanket all around me.
Got a message from B - a virtual companion in this illness - who assured me that I will eventually return to a normal life again even if it will be a diferent "normal" than what I have known so far.
It was meant to be kind and reassuring, I know, but I flinched. Oh, how I hate what this is reducing me to.
Tonight the drama is in my head, roaring and banging and pressing the vice harder and tighter.

The thing is I am really alone

And there is nothing that will change this. At times my tiny social net appears almost non-existent. I am reaching out and in return hear a loud echo most of the time. And then I don't reach out any longer. I cannot bear explaining this monstrous illness yet again, while anticipating someone's withdrawal. The clueless shaking of heads, the embarassed giggle and "all will be well" drivel. And the long silence. I have started reading "In your face" by Lia Mills which is very moving and recognisable to some extent but her dscription of friends and their support makes me weep. I don't have it. I am alone. People are as clueless as most of the doctors, curious once, and then drift away and I cannot bring myself to ask again. My companions are virtual. The loneliness roars inside me.

The dark grey winter

I am so tired of whining and feeling sorry for myself. I am so tired of this dark, grey winter drama, outside and inside of me. The weekend was hard with all this fear about what's going on with my heart. Watching and listening to my body is doing me harm. And now, mid afternoon, is often the hardest time of the day when I get all jiggery and I imagine it's because of the cortison getting low. But of course I don't know that. I just remember Dr.V-H in the clinic in M advising me to use the mornings for important things as I will be at my best then. "My best". Hah.
Mid afternoon is the time when the roaring gets so loud it scares me. I feel it wants to remind me of being ill. But also I notice clearly that the roaring gets louder and the pressure in my ears increases when I move, when there are sudden outside noises and after I have eaten.
GP K was his usual understanding pleasant self again and I felt such relief. Maybe because of what I said the last time about whether he wants to keep me as a patient. Anyway, he is looking into things cardiologically and we will meet again tomorrow. I also expressed my fear that I was heading into a psychosomatic tunnel and I told him that I want professional help if that's what is happening to me. And not the kind of "listen to this CD"-help Mrs S is offering in her beautifully furnished rooms and her expensive clothes and shoes. I don't think I want to go back to her. I feel as if I have looked under her covers.

Re psychosomatic: "...it's good to mull these things over [...] to lift the slimiest of rocks and see what's underneath." (Lia Mills, In your face)
Phoned Dr B this morning with the hospital results. She is so pragmatic and cheerful and even though K doesn't accept her suggestion (until double checked with an expert) to have yet another cardiologic test done, I value her time and her matter of fact professional assessment. Every time I speak to her my symptoms seem to fall into place ready to be looked after and sorted by the proper medication, time and patience, relaxation and recovery.
If only. There seems to be so much more involved that I have yet to grasp. Being alone so much of the time is the hardest but being in R's company was not much better the last two days.

The days are longer now, the promise of spring is there even with the rain and the grey skies. Sunny this morning in between. The heart has been calmer today so far. Still noisy when I breathe, also shaky and my steps echo inside my head. Tired. My big cat is getting so weak I think she is dying. We rest together on the sofa after she struggled onto my lap forwhat feels like ages of pulling herself up.

A week in hospital

There are moments of simple clarity where my mantra works a dream and I look out into a world almost at peace. Where – albeit vaguely – I can see myself living confidently through the coming weeks and months slowly but surely recovering. Where I can see myself learning to cope with my new life even if recovery does not materialise as straightforwardly as I want. Where I can see myself discovering new strength in coping with a changed life scenario, with chronic illness, disability and loss, loss of income, activity, energy and mobility.

But then again comes the dark hour or hours, the black dog, the old crone, the witch, the heavy cloud, the curtain of despair…folding, washing over me, cornering me, crushing me until I feel that all of that little bit of spirit and resolve has gone out of me.

Most of last night my heart was racing and rattling again. But my heart has been checked from almost every angle and appears healthy. One more test tomorrow. Yesterday’s gastroscopy confirmed the suspected gastritis, hardly avoidable with the drugs. There must be a way to get at least that under control.

One thing this hospital stay has taught me: There are people who are struggling and coping with so much more. So maybe one day I will learn this also.

today's mantra

According to Wikipedia: A mantra is a sound, syllable, word, or group of words that are considered capable of "creating transformation".

Here we go:
What I am experiencing is a heavy flare of a rare and serious autoimmune disease. This flare will pass in time. The medication will work despite its side effects. My hearing is back to normal. The present problems with my heart, breathing and digestion may not be related and even if they are they may be treated in due course. That is why I am going back to the hospital tomorrow.


This I want to promise myself:
I will not die of this.
I will not lose my hearing.
I will get better again.

This much I know for sure:
I know of people who have recovered from such a flare.
The drugs I am taking have been successful with other sufferers from this disease.
I can hear again.

sneaking home from hospital

In the end GP felt it necessary to have my irregular ECG readings double checked and since I have been very shaky with palpitations and shortness of breath this last week, he arranged for me to go this morning to the MH. Everybody was nice but it was such a wasted day and the prospect of waiting in this room with two very ill women there until Monday was too much. At dinner time (which comes early in hospital) I signed myself out to return on Sun evening as the actual tests are not due until Mon. Of course I am nervous but the ward doctor was very unconcerned and said there was nothing alarming in the bits they did today (ECG and blood tests) and the three careful student interns who examined me heard a strong and regular heartbeat.

This last week I have been so weak and shaky and what with the palpitations, the waking up at night gasping for air, the fact that there is almost no roaring and no symptoms after a good night's rest - i.e. moving makes it all worse - I am even more insecure and this I-am-like-a-raw-egg feeling is so persistent.
Yet: for the past couple of days I do feel some slight, ever so slight improvement after the eve dose of Aza. Or maybe it's my man being at home and around me. Whatever. I accept it as a gift for the time being.

Tried to concentrate on breathing whenever I felt uptight and panicky today. Tried not to do or say anything, just using breathing to calm myself. Attempted it at least.

My lower legs are numb a lot.

alive

Last nightI wrote to UJ about the clinic and my exhaustion and I asked her whether there was a good fairy for autoimmune patients. She directly replied, "I can assure you that this acute flare will one day be over even if it's an almost 'impossible promise'".
My heart made a leap. And all day today this simmering feeling inside of me: One day you will feel alive again, you will feel joy again, excitement, happiness... so much to rediscover behind this heavy black curtain around me. Switch on the radio and hear a song and start dancing. One day.

and on and on

Well, the roaring has come back and the vertigo has more or less disappeared. Some deal. And, they wanted me out of that clinic fast. Once the print outs from the diagnosis showed acute vertigo, it was only a small choice between what university clinic I was sent to. By the time I arrived at the one closest to home, vertigo had calmed down and they sent me home. And so here I am.
The last four weeks at the specialist clinic were useful but also much too stressful. Too active, not enough rest. Autoimmune vasculitis is a battle, immunsupression and the side effects from the drugs is a tough job for the system. At least I know that now.
So I am back at home, alone with the cats, books, internet and my panic stations. But also with my coping strategies and in the evening, my man comes home to me. Spent most of the day flat out or in front of laptop.
GP K was brisk, almost pushed me out of his office, was somewhat offended when I asked whether he was prepared to keep me as his patient. Maybe I imagine things but he seems to disagree with the treatment? I have no choice and he can stuff it. I need him to do the labs, to get me the medication and the sick certs.
Tried to get an appointment with a local immunologist. Not until end of May...
Well, I am not an emergency. I suffer, yes, but I get the state of the art drugs and that is all modern medicine has to offer here. There is no quick fix, no relief. A long hard slow battle with heavy symptoms, with my panic and fears, my long nights and long days of exhaustion and maybe one day the promised improvement? I cannot afford not to believe it. Medical experts tell me, told me, that my chances of recovery, of remission are good. Some even said: you will recover. I try to carefully reach out to some fellow sufferers but the minefield of negative and upsetting internet sharing is too much to cope. I must be my own island, must relearn to find sanctuary in my own strength.
Symptoms of the day: heart racing, pressure in chest, somewhat better after evening meal, pressure headache in the evening, bell jar feeling, little vertigo, roaring slight am worsening pm. EXHAUSTED.