you of little faith
in love that was
in kiss that separates
day and night
in silent phone
waking me up
in the middle
of the night

     after all this time

     I still eagerly check

     for messages

     as if any of them

     might have come from you

     while your photograph

     smiles at me

     with forlorn look

you of little faith
in love that was

     the vast half
     of my double bed
     the space
     where the mattress
     still cuddles your body
     beside me

me of little faith
in love that won't come back
that never left me
after all this time

copyright Nikki Darman 29.07-23.10/2012
[C.D.]

I meant to say how is it that I ended up with an orthopaedic collar on my neck...  I was just about becoming myself after the surgery, when I went out on Friday to an art gallery.  Long story short, I fell on my back, whacking the head with all force of my 5'7'' (176cm) plus whatever laws of physics, acceleration, etc, against a wood-board floor (thank heavens it wasn't concrete!!!).  As the result of this brief encounter of third degree with the floor, I went into a black hole as in lost consciousness for a moment, earned a 3" (7cm) diameter sore like don't-use-such-words-in-public bump on the top/back of my head, the left half of the back is stiff and sore, the right shoulder is completely out of action (yes, it was sore before, but now I got into the new realm of extremely limited movements: the elbow would go up only if raised in front or - with more difficulties - behind me, but would not bulge going to the side, the pain in the shoulder is simply showing me all the galaxy's most beautiful constellations of stars in front of my eyes...) and - best of all - I have to wear the collar.

Just like in my youth, when at 19 I broke the neck and had to wear first the corset, then the hard collar, then the soft one, to hold the neck together...  And yes, this is precisely when my dearest friend for life and death, fibromyalgia, decided to join me and never to leave me again - even if I didn't know it until the last two years...

But what's really scary is that in recent times I dream more often about my father, or just his intangible presence near me - and today, for a brief moment, I had this oddest sensation that someone is sitting by the shelf on the other side of the sofa - just an impression, felt rather than seen, by the corner of my eye.  By the nanosecond it took me to turn my stiff neck to look in that direction the space was - obviously - empty, but it was the silhouette of him, young and fit, and so caring...

I'm already a pretty much a medical miracle that I hold on for so long, but no matter what the doctors tell me, somewhere deep inside me I know what is my limit: no more than 2+half years from now, when I will be exactly my father's age when he died.  And I suppose it doesn't really matter how old you are when you die, inside your head - and the minds of your contemporaries - you are still too young to leave, and the older and sicker I get, the more I feel now young yet ill my father was when he died...

Tuesday's gastroscopy under sedation was fun - they considered me great risk (two heart attacks, and very low blood pressure - they checked few times hoping it would get up, but it stayed at 90/60ish), so they put me in the children's room, because it has best monitoring.  Might be so - but my legs were sticking out from knees down, so had to curl, except the width wasn't great either, when I was on my back my arms were just at the bars.  Fun...

So, it was gastroscopy, and they were meant to take some biopsy samples - not sure if they did, but wouldn't be surprised, because I was terribly sore for some three days after.  My jaw wasn't happy either: they were doing it via my mouth, but due to the fact that my right jaw joint is gone (as in: doesn't function, doesn't exist any more), they had to wait till I was well sedated to open my jaws and put the stabilising ring around my mouth - and yes, that was sore as well when I woke up.

I don't have the official results, but a friendly nurse had to leave my chart on my bed for a moment - long enough for me to have a quick look at what they wrote they found.  Nice big (some 2 inches diameter) oesaphagal hiatus hernia, i.e. extra sack where the oesophagus enter the stomach.  Gastritis = significant irritation of the stomach lining.  Oesophagitis = some food goes back from the stomach.  And some sort of infection, don't ask me what.

Took me Wednesday and Thursday to recover properly, and on Friday had a fall/an accident - but that's another night's story...

Going to hospital tomorrow - sedation, gastroscopy, biopsy/biopsies (God and Dr Moloney only know, how many samples of my wonderfully attractive inside he would like to have a proper look at!)...  He (Dr M) is determined to figure out what on Earth is going on with my digestive system - while I'm sooooo tired with it, there are moments I honestly don't care any more.  Anything is better than thinking about the constant pain, the nausea, the feeling that one more bite and whatever I ate will not stay inside me much longer...  and eating all the mushy stuff doesn't do much for my appetite either - I mean, what appetite...?

Dr Eimear told me today she sent the request for the wrist surgery for me some three weeks ago - we will see how long we'll have to wait for that one.  At the moment my right wrist is wrapped in a gigantic bandage - because the pain is so bad, I had to start spraying with Difine again (which burns my skin very nicely, thank you), and then I wrap it in the rolled/pressed triangle dressing and put a decent layer of bandages on top, to immobilise the damn thing.  Yes, I do have the metal wrap, but the wrist somehow twisted and I can manage to sleep in the metal one, but not to wear it during the day...

Tomorrow is another day...   Or not...   I'm not in a good form for tomorrow, but I have to have it all done...

It took me good few days before I was able to say anything about the newest development (what's the opposite of the 'development'? apart from 'regress'?).  For quite some time now I have a really bad pain in the right jaw joint - I've been seen by the maxilofacial consultant last Monday morning, and the diagnosis... there is nothing they can do, the joint is 'gone' completely, the jaw is hanging by the ligaments, tendons, muscles and skin, and of all of those only the skin is not affected by fibromyalgia, so from now on it will be hurting, that's it.  I have the night guard for the lower teeth (so that they are no longer 'flattened' by the top ones), but after getting the flu&pneumonia jab some ten days ago I had gum ulcers (my usual reaction - but better that for ten days than risking infections for another year; my immune system would not be able to cope with infections much longer), so had to stop putting in on for a bit.  As a result, the joint got completely overworked, because I was simultaneously quitting smoking (two weeks and counting!), trying to cope with the financial pressure and the nightmare of the court case regarding my property, and getting used to my new reality that I really cannot cope without a Personal Assistant (from the Health Board) any longer... so I was under big stress.

Long story short, my jaw joint got perfectly 'finished' during the last 2-3 weeks, and now it no longer exists - and as a result, I'm no longer allowed to eat any food that needs biting and chewing.  Everything has to be blended and mashed to the degree, that all I need to do is to swallow it.  I'm surviving on baby food, which is - to be honest - absolutely and totally revolting, at least the 'meaty' and the 'veggy' jars (puddings and fruit are, actually, rather nice, but they have lots of sugar). 

I used my own hand-blender today on my 'meals on wheels' dinner, and although it tasted of the meat and the veggies, it was pretty awful: the consistency of a raw pate, which I had to swallow...  And it's very difficult for me to cut meat into small pieces, which can be then blended because the wrist is protesting too much...  Until now I used the fact of living alone to my advantage: I would dig the fork into the slice of meat and then bite junks off, without using the knife...  Primitive, but effective when one's wrists are in such a state that I'm waiting for the surgery!

Dominika said she would cook some rice with something for me for tomorrow - hope it would be nicer (I'm to be very careful with rice - no more than once a month, most likely, and it has to be well cooked, bhleeee....).  I feel a bit - a fair bit - self-conscious when accepting food from friends who wouldn't accept any form of my recompense for the dinners they give me, and at the same time my choice is to accept it or go hungry... If I was ever proud (and yes, I was!), I'm pretty much a beggar now, dependent on others.  It's very uplifting to know that I do have friends I an rely on so much, but it's also bitter to know that I can no longer rely on just myself...  Very bitter.

Had such a great fun today: I fell few times, including once when I landed on a heavy side cabinet in the kitchen and moved it by some 6-7 centimetres, once hit my head against the keyboard when I fell asleep during typing something (and my neurologist was doubting if I really have narcolepsy! funny man), slept on the bed for an hour while the phone rung next to my ear (and yes, I did have the hearing aids in!) and I only noticed after I woke up, because the light of the 'missed call' was flashing on the screen, which then reminded me that at some point Jacky tried to move me (which only happens if the alarm or the phone are waking her up!) - so yes, all in all fantastic day.  Will have good few new bruises to show for it!

Meals on wheels are life-savers: I pay €4.00, and it's so big for me, it lasts me two days, and that's only because Jacky (the dog) and the cats help me eat the dessert (usually a jelly, which I like a lot).  Initially I had a slice of meat in veg plus potatoes on Tuesday, and a chicken in veg plus potatoes on Friday, and now since last week I get really tasty stew plus potatoes on Tuesday, and fish in veg plus potatoes on Friday (if Sean remembers to tell the kitchen...).  And each time it comes with a dessert: a jelly with cream, or an apple dessert with custard.  If someone honestly cannot cook for themselves, this is honestly a fantastic service!