21 July 2017

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.

16 July 2017

Through the open window I can hear R digging out one of the compost heaps, the dull sound when the spade hits the sieve. He will be busy all afternoon, spreading the fine compost on the beds now that the potatoes and onions have been harvested.
Earlier, he picked the black currants and later, I will top and tail them for the freezer and on a cold day in the autumn, we will mash them and boil them and strain the pulp through a fine mesh and add some mint and vanilla sugar and a shot of gin.

Last night was awful, colicky and sweating, I walked and sat and got up again trying to find a less painful position, counting the hours it will take for whatever is tormenting my digestive system to pass through. I have had nights like this for many years on and off, maybe once a month, a gift from the immune suppression medication. And there have been nights when at 4 am I was ready to get rid off all my life saving drugs just for a few decent painless hours of sleep.

I have never been very good with sleepless nights. All this tossing and turning, feeding on buried anger, unsolved problems resurfacing, I would get so mad at R and the entire sleeping world out there, oblivious to my discomfort. And even now that I have mastered the techniques, the breathing, the progressive muscle relaxation, when I return to making lists in my mind, rework the details of pleasant memories floating in the Indian ocean, I still fell I deserve better, that all this is not fair.
If I don't watch it, these nights can be tricky, with many hidden traps, a lonely tunnel opening full of suspicious thoughts, unresolved conflicts, too many questions, ancient fears. And before too long, I am reduced to doubts about everything and nothing and furious with myself and anybody I can blame.

Next morning, sluggish, nauseous but more or less pain free, I get up carefully, slowly, yet full of hope and the night, it's just another memory.

A bit over seven years ago, when I had wept with relief that there was not only a diagnosis but also medicines to keep me alive, I just smiled at the expert who listed the most common side effects and risks and what I need to watch out for and so on. Fine with me, I nodded foolishly. I can handle that.

After all, the terminology is nothing but benign, side effects, something you have on the side. As in: Oh, by the way, you will develop chronic gastritis, your gums will constantly bleed with ulcers, your skin will bruise easily and you will develop an endless series of festering cuts and nicks and tears anywhere on your skin but generally in places where band aids won't stay put, and beware, they will take ages to heal (if at all).
Most of the time, I also forget to remember that over time the side effects 'have been known to worsen'.  I remember thinking, have been known, what a preposterous concept and of course, I dismissed it immediately.

As I said, I nodded foolishly. You learn an awful lot, I admit that. Mainly, that you need to get up in the morning and welcome the day, regardless.

11 July 2017

(weeding is overrated)

Some mornings while the air is still cool and the pigeons are cooing outside I make my lists. I have been making lists for as long as I can remember. Lists of all my new year's eves, my class teachers, the names of the streets I have lived in, my toddler daughter's shoes, our holiday destinations, lies I have told, promises I have kept and promises that I have broken.
Then there is the list of things I can no longer - do, experience, feel, eat, drink and so on. I only started it today:

strong coffee

Oh well. I start with the obvious and head straight to the household drugs.
Someone recently told me in great detail how he will start smoking and drinking again 'when the time comes'. This way, he said, I will have something to look forward to. And never mind the consequences.
I wouldn't rush to start on cigs and booze, I said to him. Come to think of it, they weren't all that nice anyway.  For a while, we dwelt on memorable hangovers occasions and drifted into our teenage wilderness years but in the end, we agreed to maybe give psychedelics a try. Eventually, 'when the time comes'.

Yesterday, while I tried to explain the levels of exhaustion to my GP (jelly legs? weak knees? drowning?) she asked whether I was sad. Not as in depressed, she explained, just, you know, sad. Without thinking, I replied, no way, I love my life. Just checking, she smiled.

This song was the soundtrack of my teenage rebellion, originally by Ton Steine Scherben, (one of them went to school with me) but this nice version is by Wir sind Helden,  who are part of my second teenage rebellion old age soundtrack, and here is an English translation.

10 July 2017

the garden is bliss

Fools hurry, the clever wait, the wise enter through the garden gate.
Rabindranath Tagore

We have reached that stage of sloth which - combined with the heat and humidity - completely cancels any desire to enter any garden-of-the-year competition. At this stage the veg simply grow by themselves anywhere, all we need to do is actually find them in the wilderness and harvest. I no longer notice the weeds (what weeds?) that push up through the patio stones and our surprise find of several envelopes of ancient collected pumpkin seeds in March, which we dutifully sowed and planted,  has resulted in pumpkin basically growing everywhere.
So take your pick, this is our wilderness.

one of the vines

the onions drying with my bicycle

petunias on the way to the laundry room

this is the corner for the bees


runner beans



buddleia and tansy

day lily battles with pumpkin

imagine their smell

hidden pumpkin
petal confetti

first tomatoes in the greenhouse

sweet woodbine

05 July 2017

Rise up from out your bed
There are dreams in the air
Harvest light for the day ahead
And shine it everywhere

Lemn Sissay

Our summer visitors came and brought happiness and made excellent pizza. In exchange for a missed holiday in Portugal. Not a bad deal. They filled the house with laughter, serious debates and overflowing suitcases. Now, they are sending snaps from China. The world is their homeland.

Back on the endless routine of doctor's appointments, physio, lab tests. I wake up every morning feeling great and ready for what ever. By lunch time, reality has caught up with me and I try not to think of what's next.

The garden is bliss.