WTF

Spring, definitely, colourful, noisy and thanks to the winds from Africa, sandy. 

I am not well, what else is new. Yesterday, I gave a short presentation of a woman in her 60s who is fed up with chronic illness flare ups and the tedious pretense of remaining cool and calm. It was quite a performance, if I may say so, which was met with a solid round of applause from the one person who has seen it all over the years. Bless him.

I cancelled all appointments and tasks for the coming week which was supposedly a holiday week, with plans to climb mountains/cross the seas and have a haircut, obviously, and now I am blissfully resigned to listening falling asleep to podcasts and getting lost on the internets., while R has taken on my assignment for today, namely power cleaning the patio and greenhouse. He usually hates power cleaning and gave a little speech just now to tell me that he is doing this in exchange of me getting better. We shall see. 

So, here is what keeps me entertained.

More sheep and sheep dogs.

Stuff about dreams. Although I would have guessed, flying is on top of any list.

Human evolution, briefly:

 

 

Groundbreaking scientific findings: 

 

Benefits of swearing

Swearing in the physical therapy setting should be used to accomplish specific goals, such as relief from pain or stress. When swearing is based on biopsychosocial utility, it may add significant value if used correctly. Swearing tends to be more tolerated in private settings and among peers as opposed to a more formal and public setting. Swearing can lead to tighter human bonds and create informal environments where people are more likely to be themselves [3]. Social groups depend on some degree of shared willingness to participate in risks or taboo practices, swearing being one of them. In the physical therapy setting, an improved relationship or positive connection between a patient and a physical therapist, otherwise known as the therapeutic alliance, has been linked to improvements in musculoskeletal pain.

 It is advised to use a swear word that you would use in response to banging your head accidentally [15]. If no clear swear words come to mind, the S-word and F-word are the two most common swear words [8, 9] and were used by many of the subjects in the research showing the positive effects of swearing. There is evidence that a patient needs to use an actual swear word, not a made up or bad sounding word, to elicit the pain and physical performance improvements.

I can only recommend that you read the complete article, it's an excellent read, click here.

I am nodding my head just like the eager monk behind him.

At night waiting for sleep to come I have now started to allow myself to think back over the last 18 months and very carefully, almost gently I am beginning to take stock, compare, look at myself then and now. What comes to mind at times is definitely startling, almost feels like an achievement - last year at this time I was more or less flat out with mega doses of drugs suppressing my out of control immune system, so obviously there are dramatic changes I can observe now - and then this list of all the things that have now become a most unwelcome part of my life starts rolling in my mind and what a struggle it is to accommodate it all and I quickly switch off, or try to switch off before I get too upset. The amount of anger is still overwhelming at times. But at least I am starting to step back and take a look at that anger and I find myself saying, well as interesting as this may be dwelling on it gets me nowhere. And so I try to take another step out of this sluggish sticky mess of ill health and another and another and another and another...

Even going round in circles you can change, surely. Please?

graffiti

Graffiti, amateur graffiti, occasionally is a desperate attempt to make some sort of point and occasionally it's just funny (and often just plain rubbish).

In my 'radical' student days I shared a ramshackle old house with various other 'radical' students for a while. We were cool, chain-smoking, ready to change the world and also occasionally attending our courses and lectures in between sit-ins and strikes and marching on the street against all sorts of issues. Nothing too dramatic in those times. And: We were too well  behaved to spray on public walls. We did our scribbling inside and out of danger.

The kitchen was upstairs under the roof and the grafitti on the second-third-hand fridge was:

If you don't want to eat you are not allowed to work. 

Haha.

Above it on the sloping wall someone had written:

We are not interested in your bits and pieces - we will never be satisfied with anything less than complete freedom.

Did I mention that we were 'radical'?

Years later I saw on a public wall in Heidelberg:

I don't just want one piece, I want the whole cake.

And recently in Berlin across an entire bridge:  

We don't just want a piece of cake, we want the whole fucking bakery!

And right now I don't just want to sort of get through life with itsy bitsy days of feeling sort of better-ish and other days feeling like shit - I want the whole healthy me and occasionally I desperately want to go out there with a spray can.

But my 'radical' cool days are over. This is it now.

the Dalai Lama tells me

Sometimes, when we are discouraged by a difficult situation, anger does seem helpful, appearing to bring more energy, confidence and determination. And while it is true that anger brings extra energy, it eclipses the best part of our brain: its rationality. So the energy of anger is almost always unreliable. It can cause an immense amount of destructive, unfortunate behavior.

jumble of emotions

It's been a hard two days. full of anxiety, tears and despair.
Last night in a song I heard this line "Be yourself" and there was a blank. I don't feel like myself any longer, I don't know this frightened woman I have become.
If anybody would have told me not too long ago that one day I will be faced with this enormous challenge to my health and spirit, I would have felt positive that I could handle it. Let it come, I would have said, look at me, I can do this - theoretically. And how I looked down on people who let themselves go - the way I do now.
Only, I am not sure if I let myself go. Rather, I seem to be struggling most of the time to stop myself falling to pieces. It's a fierce battle.

This afternoon, R and I did a short bit of Qi Gong with the lovely tape I got years ago. It was a nice piece about the ever changing universe, about yin and yang and two sides of everything together with gentle playful movements of the hands.

And next I read this by Pema Chodron:

A few years ago, I was overwhelmed by deep anxiety, a fundamental, intense anxiety [...]. I felt very vulnerable, very afraid and raw. While I sat and breathed with it, relaxed into it, stayed with it, the terror did not abate. It was unrelenting [...], and I didn't know what to do.


I went to see my teacher Dzigar Kongtrül, and he said, "Oh, I know that place." That was reassuring. He told me about times in his life when he had been caught in the same way. He said it had been an important part of his journey and had been a great teacher for him. Then he did something that shifted how I practice. He asked me to describe what I was experiencing. He asked me where I felt it. He asked me if it hurt physically and if it was hot or cold. He asked me to describe the quality of the sensation, as precisely as I could. This detailed exploration continued for a while, and then he brightened up and said "Ani Pema, that's the Dakini's Bliss. That's a high-level of spiritual bliss." I almost fell out of my chair. I thought, "Wow, this is great!" And I couldn't wait to feel that intensity again. And do you know what happened? When I eagerly sat down to practice, of course, since the resistance was gone, so was the anxiety.


I now know that at a nonverbal level the aversion to my experience had been very strong. I had been making the sensation bad. Basically, I just wanted it to go away. But when my teacher said "Dakini's bliss," it completely changed the way I looked at it. So that's what I learned: take an interest in your pain and your fear. Move closer, lean in, get curious; even for a moment, experience the feelings without labels, beyond being good or bad. Welcome them. Invite them. Do anything that helps melt the resistance.


Then the next time you lose heart and you can't bear to experience what you are feeling, you might recall this instruction: change the way you see it and lean in. That's basically the instruction that Dzigar Kongtrül gave me. And now I pass it on to you. Instead of blaming our discomfort on outer circumstances or on our own weakness, we can choose to stay present and awake to our experience, not rejecting it, not grasping it, not buying the stories that we relentlessly tell ourselves. This is priceless advice that addresses the true cause of suffering - yours, mine, and that of all living beings.

 if only...

what is it with me

Here I am in my nice and comfortable home, with R's beautiful garden in late summer colours to admire (even in the rain), my bicycle ready for a short spin (which I can manage most days), the river just down the road, a full fridge and larder, comprehensive health insurance and sympathetic doctors, no one to put pressure on me, no demands, no threats, no dramatic financial worries...
Today:a long and lovely chat with my wonderful daughter across date lines, oceans and continents, a short, careful and slow trip to the library with a coffee to go and fresh brioche, my man at home early ready for a leisurely weekend, the cat looking at me waiting for her dinner, the rain almost finished...and all this with my constant companions nausea and vertigo and my dodgy ears... Reasons to be cheerful?

I am ready to freak out!
When I walk through the garden I imagine the long cold winter ahead,
when I am in my kitchen, my roaring head competes with the humming of the fridge,
when I slowly cycle down to the river I think of all the long cycle trips I can no longer do,
when I sit at my desk or anywhere with the laptop, I try not to miss my office and my job...
when I move through our comfortable home I want to throw out all these cosy sofas and beds and chairs and rugs - I am so sick of needing rest!

How much I want to snap out of this!
Concentrate on what I CAN do instead of all the things that are not possible.
Why is this so very hard to do?

I feel so undignified in my despair, so weak and pityful.
So far far away from the woman I was/want to be.

trying to climb up again

I had the most wonderful half week since last Thur because with the banjaxed MTX shot last Wed there was no nausea at all. I mean NO NAUSEA and thus no need for drugs to counteract nausea so no wobbly legs from that either. I had a clearer head and was feeling better alltogether, cycling every day and even cleaning the kitchen cupboards.
Bliss. Memories.

And when K slowed me down yesterday in his surgery suggesting (i.e. no!) I wait until at least the end of Oct before attempting any regular work in my office - even if only 1-2 hours/day - I did not flinch but took off on my bicycle, got myself a fat newspaper and sat down in a café to read.
Back home I had the shortest of rests and started on some serious desk work, i.e. moving my head up and down and around and taking notes and so on and slap bang I was back down in that dark corner with the roaring head and the lot.

When R got home my face was beetroot red and I was shaking with fury and disappointment. He kindly guessed it may be a shortage of MTX what with the messed up shot and we both reassured ourselves that this was just another little slip on the big road to recovery. Ignorant fools that we are.

So today my friend nausea is back. Fear is humming around my head.

Let's face it again and again:This is the shape of things to come. I am chronically ill. This is my life now. ACCEPT these symptoms and stop feeling miserable.

Behind the hardness there is fear
And if you touch the heart of the fear
You find sadness (it sort of gets more and more tender)
And if you touch the sadness
You find the vast blue sky.

(Rick Fields)

almost autumn

There was so much rain this week! In August, high summer. Today feels like autumn even with the lush garden smelling of wet lawn and compost. Another batch of delphinium ready to flower and the greenhouse full of ripe tomatoes.

I must steady my mind, go easy on my fears. Thinking of another long dark winter being ill is so dreadful. I am pushing away this thought and yet it sits there inside my bones and my brain cells ready to jump and shout. I move through the days counting the hours that pass, congratulating myself when I managed to make it through another day without too much sadness and self pity.

I just deleted a long whine about my miserable attempt to try and work for an hour in my office, sneaking in last Sunday while no one was around.

My concept of a working life has to be totally redesigned. No idea how. I am so mad. Nothing in my life has prepared me for this train wreck.

But I have made steady progress on my bicycle, doing 7 km now on a stretch along the river, gently, slowly, but what bliss. Today R made me this gift: He drove me and bicyle up to the hills and I cycled all the way down through the forest with tears running down my face, shouting with joy. If all things fail, let me do this once a week at least.

another one bites the dust

For almost four weeks I have been trying to do some sewing, just a couple of simple repair jobs. I have been avoiding it - instinctively it seems -  while at the same time aching to get it done. So this afternoon I told myself firmly to get on with it.
About one hour later it was done. And the sea sickness was overwhelming.
I'll pack away the sewing machine tomorrow.

It's not as if I have been strongly attached to dressmaking or patchwork quilting etc., I am just mad!

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

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.