pink clematis

We met the latest member of staff at the immunology department last week, a Greek doctor, very polite and ever so well dressed in his starched white coat, silk tie and blue argyle socks. My guess is he is probably not a day older than 35. But in my experience - and there is research to back this up - young experts who want to get ahead and become senior experts work hard to stay on top by reading, attending conferences, checking with colleagues and all that stuff doctors are meant to do before the know-all rot sets in. 

This time, R came along because he had time to make sure I mention all the shit that's been happening and not be full of smiles and I-can-copes until the door hits me in my back on the way out. For this purpose and also to show off how organised he is, R had made a nifty list using some app on his phone and he basically read out all the items one by one in his gravelly low voice while I tried to pretend he wasn't there and that I was actually quite well and surely believing is seeing.

But our Greek expert was right on the ball and after some tsk tsk tsk and a rather painful examination of my hands and feet, he put me back on all the drugs his colleague had dropped so swiftly three months ago. Experiment failed? I asked. Afraid so, he replied.

Fun fact: If the joints in your hands and feet hurt at night when you are all rested and just try to sleep, it's called arthritis (-itis meaining inflammation), if they hurt when you move them but are ok at night it's called arthrosis (old age and wear and tear damage), if they hurt regardless of what time of day or night and whether you move them or not, it's called rheumatoid arthritis (which is another word for you-are-fucked). 

So basically, my immune system has become bored with the blood vessels and has moved onto joints and tendons. 

lemon

There is a pattern here. Because back in the day, in the summer of 2000 to be exact, it started with autoimmune hepatitis, something I decided to almost completely ignore because: disbelief and being arrogant and ignorant and convinced that all doctors are in cahoots with the pharma industry. I actually considered filing a complaint when after the first liver biopsy it was suggested that I put my name on the transplant list just in case. 

For a long time, I thought I had shown them all (them being the medical cahooters) how in tune I was with my body when my liver recovered after 18 months of healthy diet, meditation, no alcohol and some herbal stuff. I did not want to know that 18 months actually means 18 months of ongoing stressful damaging inflammation caused by a hyperactive immune system and that a swift course of steroids plus immune suppressing drugs, 3-4 weeks max., would have brought it back in line. Hindsight. Haha.

Anyway, the pattern: autoimmune hepatitis turned into ulcerative colitis turned into autoimmune  vasculitis and now rheumatoid arthritis. Even I can see that and I can be blind to facts like the next person. Plus: my liver values are slightly up again. My lung function is somewhat reduced and who knows what the cardiologist will find next week.

In short: I am slowly climbing down the steroid mountain again, reducing weekly in tiny steps, back on immune suppressing chemo etc. Yawn. Old stuff. 

no idea

But today is warm and mostly sunny and I am out on the patio, lazing on the sunbed R fixed for me, the beehives from my neighbour's garden are humming, I am reading and dozing (I am on official actual holidays from work), in between I wash a window or two, fold some laundry and pretend that all is well. 

Can someone tell me what this last plant is? The bees love it.

laryngitis and sinusitis meet bronchitis

All good things come in threes? Any other -itis out there? Come on and let's get it over with.

Bored, coughing, sneezing, shivering, snotty, shaky, aching, cabin fever.

For absolute excitement I am considering wrapping up really well and driving down to the river for a good look. Sneaking out of my prison so to speak.

laryngitis meets sinusitis

It is getting a bit crowded here in my upper respiratory quarters. Grey, misty and cold-wet November weather adds a sprinkle of misery.
Feeling useless, I watched all episodes of The Big C.
Kind of a sugary, empty taste in my mouth now. Maybe the lozenges, maybe Laura Linney's grin.

slow motion

The day starts shortly after 6 am. I wake up every day just like that. At least for once my body is dead on reliable as I am supposed to take two drugs between 6 and 8 am. So I swallow the stuff in the dark and lie back for a doze or even more sleep until R's alarm goes. I watch him getting up, his day's pressures and schedules are already noticable on his face. We touch briefly, silently, sharing comfort and warmth. When he goes downstairs I usually sleep/doze some more with the murmurings from the worldservice news coming up from the kitchen.
When he is done with getting ready I go downstairs to watch him zipping up his coat and putting on his warm gloves. Another hug and he is out of the door and I watch him walking through the garden, leaving on his bicycle.
I pour myself a cup of tea and go back upstairs and climb back into bed. The cat follows me. She seems to like me being around at this time of the day. Back under the covers I let the waking up begin. Now it is too cold to have the windows open, so no birdsong, no school kids, no busy neighbours getting into their cars.  Instead I silently wait for daylight to take hold and then I read for a while with the cat watching me. I work hard on drawing this out for almost an hour. There is a lot of lonely daytime ahead. Too much time, too little energy.

How I would cherish a speedy morning from not too long ago: Up and shower and breakfast, quick glance through the newspapers, goodbye and off on my bicycle. All motion, brisk, efficient, energetic, ready and expectant. Like a snap with my fingers and knowing, knowing all the time that whatever challenges this day will bring I will manage. In fact, that was always the best part, the challenges.

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.

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.