It's nearly two weeks now that I can't manage the simple tasks - writing letters, reading documents, staying on top of my shopping needs, 'coordinating' cleaning...  even watching TV or reading some really good books is tiring so much, I can't do it for longer than half an hour in one go.  It just somewhat changes from whatever I'm doing into a growing monster, which is towering above me, ready to crush me flat - my breathing is getting more difficult, and each task is demanding more and more energy and effort to carry out...  I feel nearly too tired to live any more.

Fourth day in a row of fever, nausea, difficulty with eating anything (feel sick after), balance problems, over-average muscles pains, and this most strange of all feeling that when I move my head, my eyes don't seem to follow immediately... I don't know what it is, and to be honest I don't even care any more - just whatever it is, would it ever please stop...

I'm following the test-case for assisted suicide in Ireland.  The retired lecturer suffering for 20+ years with MS... If she wins (and as rare as I pray, I do pray for that mercy for her), I know a certain retired lecturer suffering with what I describe is the exact opposite of MS, who hopes to be able to use the same route when the time is right... fancy that, ha?  But it's next to impossible to understand what does it mean to have constant pain, day and night, when even sleep gives no relief, because the pain wakes you up and makes it too difficult to move and change position into - what you hope - would ease it, but you are far too sore, paralysed with pain, to move...  No, unless you get to that level of pain, please do not tell me - do not tell anybody - that assisted suicide is immoral, wrong, or whatever other rubbish you think you have the right to proclaim.  You don't have any right.  Not until you experience it.  And then pray to whatever deity you pray, that you would never ever experience it yourself.

Complete nightmare: my shoulder is jumping in and out of the joint, the hip bone is cracked (or makes a damn good impression of it, hurting like bloody hell for the last 10 days-two weeks) and the most recent is my lower back, which is so sore, I couldn't get up this morning, I don't plan to get up tomorrow, and furthermore it's long time since I last cried because of the pain...  Despite all the tablets...  Ouch.......

it's not the death that scares me
but the dying
the slow dragging
careful stomping one foot
in front of the other
stiff body refusing to follow the mind
tired mind hopeful to be free
any time now
any time soon

degrading inabilities
to undress to wash and dress
my floor swept by the other
silently when I don't see
let's both pretend it was clean

degrading inabilities
to cook to eat and wash up
the one who constructed a dishwasher
is a hero of my stiff neck
my sore arms my shaking hands

it's the dying that hurts me
not my friend the death

copyrights Nikki Darman, 23.10.2012

Was talking to a friend of mine recently - a somewhat younger girl.  And then it struck me: I started singing a song from the time I was young, one of the early lyric-rock songs, and she looked at me amazed - not with my voice (which is most definitely not what it used to be!), but with the fact that I could 'still remember' the lyrics...  I felt sooooooo much older in this one instant split of a second...

But somewhat proud of myself, that I can still sing without terrifying the living ... [bananas] ... out of everybody!

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!

My Personal Assistant turned out to be a nice young lady, whose help is sometimes absolutely invaluable.  This morning, she had to unbutton my shirt and help me get off the T-shirt, which I slept in (my shoulder was so bad yesterday evening, I couldn't get undress above the waist - I managed to get the trousers etc. off using left hand and the feet...), then after I had a shower she helped me dry my back (shoulder still stiff...), get dressed, and what was the most important of all, she spent good while massaging my shoulder with the heating and pressing and muscles-shaking 'handle' (a present from C....) - all in all, I ended up washed, clean, dressed, and even my shoulder wasn't killing me!

And in the meantime, she emptied the dishwasher, bless her cotton socks!  She's coming three times a week for an hour, and it's only a second week, but I already can't imagine how did I manage to function without her before.

The new antidepressant is definitely working - I manage to do few things on my own initiative nearly daily - but the side-effects are pretty bad.  I'm losing weight even faster than I did before, have no 'normal' appetite, then start having pangs of starving when the feeling is not that 'I'm hungry', but that 'if I won't eat something right now, I'm going to get flat down on the floor'.  I've seen doctor Moloney, gastrologist (plus few other credits to his name), few days ago - he is a stern, nearly 'dry' man, but he listens with nearly absolute focus, and even if he's writing something when I speak, he always asks questions afterwards showing that he didn't miss even a single word.  I like him, and trust him, both as a person and as a medical professional - obviously I don't know him other that being his patient, but I'm pretty sure that he is one of those rare really decent doctors, that I'm sooooo lucky to find looking after me: he asked how I feel about staying in hospital for 2-3 days 'for tests', but it's in Nenagh, so I told him honestly that I don't really fancy the idea.  Maybe if it was the Regional - five minutes away from home, and perfectly easy for most of my friends to drop in.  So anyway, he said that he will organise the outpatient appointments, first for scans, then gastroscopy and whatever else.  He said that we have to get some explanation as to why am I losing the weight...

Last few nights have been awful: I wasn't able to take off the skirt in the evening, so I slept i Pj's bottom and the T-shirt/shirt on top.  Stretching, turning, pulling my arms, trying to grab either the buttons or the edges of the sleeves - it was simply too much pain.  So instead I had a little bit of sleep, be it in my daily clothing, and in the morning, when I was more rested, I would slowly get the dirty tops off and get into the shower, so that the shoulder pain was immediately treated with warm water...

big day tomorrow - my new personal assistant is supposed to come in: got the pleasure three times a week for an hour each time.  maybe i would finally get to use the compression stockings again: the way it is now, i can't grab them tight enough to pull them up (even if they are only knee-high, it's simply impossible for me to put them on).

have been seen by prof. Harmon not so long ago: the wrist needs a surgery, there is nothing else to be done to even try to alleviate the pain.  while he is at it, the surgeon is supposed to have a look at my shoulder as well: the pain is nauseating at times, it's so bad...

like a wounded animal
i circle my own past
unwilling to close my eyes
unable to stay alert
my body too tired to move
my mind in chaotic dance
of gone faces gone places gone me

like a wounded animal
i recall my life
in the darkness
of my closed eyes


copyright Nikki Darman 20/07/2012

'it's the next stage - i'm so very sorry' said my GP today, when she saw me after returning from her holidays, when i staggered into the examination room with my 'new wheels' = the walker.  for a moment i wanted to reply 'yes, but we didn't really think i would manage to get here' - then i realised that if i suddenly jumped from the pain i was experiencing even six month ago to what i'm going through today, i wouldn't have made it, but since i'm going downhill very steadily (albeit terrifyingly fast), i'm somehow able to survive the pain...

for the last two days my legs are playing up: they are really hurting, and they feel weak.  they don't feel mine at all, it's really strange - i can see them looking the same as always, but they are becoming an estranged part of my body, part that i can no longer control...

but on a positive note, i think i made two friends last week, one being my student and one being a person who asked me for help in filling in some forms...  somehow, they open up to me, and i ended up listening, thinking, feeling, and finally talking...  it's so difficult for me to talk to people: those who knew me as a fully abled, energetic, going-going-gone time don't know the person i'm becoming now, and those who meet me now have no idea who i was, who i used to be.  i nearly wrote that they don't know 'the real me' but i don't know any more myself who the real me is: i have all this past in me, which made me the 'me' - but this fibromyalgia-crippled body is me as well, yet a completely different one, dependent, constantly exhaused, having great difficulties to do anything.

is this what my grandfather felt after having his legs amputated: that he is not himself any more, that the body he is stuck with belongs to some other Stan, who he didn't know and didn't wish to know?  i have no idea, but i know how much he was looking forward to die, to end the pain.  because i started my waiting already.

for the last few weeks I struggle with really bad depression - so bad, in fact, that my psychiatrist decided I should change the antidepressant, because the one I'm on clearly isn't working any more.  so on top of being in pretty bad shape in the first place, I had to be weened off the Lexapro, which I was taking, and only then I could start on a very low doze of Venlaxafine, before the doze can be upped to the level equal to what I was on before, and then gradually raised again...

I know that depression (or bi-polar disorder, which I have - and which is probably the 'residue' of the brain tumour, which I had some 17 years ago) is a very common sister-illness of fibromyalgia (i.e. those afflicted by fibromyalgia very often suffer from depression as well), but it doesn't really help: the lower I am, the more I feel the physical pain of fibromyalgia, which makes me more depressed and unwilling to move or live, which causes me to be more sensitive to physical pain, and so on, and so on... vicious circle...

what keeps me going is the students, and my animals - when I look at them, they still give me a little flicker of joy in this very lonely, otherwise pointless life.

I realised recently that what I miss most is the 'direct' human contact: any time when one of my friends hugs me, even for a brief moment, and does it because they want to and not because it's some sort of ritual or expectation - this moment of being held by another human being is a confirmation that I still mater, that I'm still a valid person despite my disability, that there is somebody who cares about me...  it's whingy, what I'm saying, but fibromyalgia is a very lonely illness, because it's not visible - so people think that everything is 'all right' because one doesn't look 'so bad', and so they expect the person to act at the same level of activity as one always did, and when one doesn't - it's this unspoken presumption of laziness, 'lack of moral fiber', 'taking things easy' instead of 'just pull yourself together' attitude...  sometimes I envy those, whose illness/disability is clearly visible.  at least nobody expects impossible of them...

somehow, i still can't get rid of depression - and pain.  had a very bad narcolepsy attacks for the last three days: i just freeze suddenly, and next thing i know it's maybe 15 minutes or maybe 4 hours later...  i learnt to recognise the first symptoms of when it's likely to come, so if i'm driving, i can estimate whether i have time to get back home, or it would be safer to pull in and sleep till i wake up.  but the driving is likely to go in the next few months - unless the neurologist (i have an appointment for 5th september) finds a way to keep me more alert and helps me regain the balance, because it's pretty bad...

Maurice said yesterday that i looked great.  i know he meant well - but whenever i hear something like this i want to scream 'it doesn't bloody matter how i look, my illness is invisible but it's killing me anyway!'.  on that note, i suddenly remembered a song i used to sing years ago: 'it's so funny to be dying when all you want is to live / [...] how funny it is to thing about something / and know you lack the words / to jump without warning from the sunlight / into the darkness of a laughing moon / it's amusing to want and not be able to / or be able but don't want / [...] / don't die yet, Pinokio / try to be through another night' - how well i understand these words now...  it's not that i want to live at all cost (in fact, the worse the pain, the more often i start to think how much longer would i be able to withstand it - and what for: there is no cure anyway, and my life is getting more and more difficult by the day, i'm becoming dependant on others with even the easiest tasks like cooking for just one person, ironing, shopping, cleaning, showering, getting dressed - and those who know me well from my 'normal' times know, that i was always fiercely independent, moving with a speed of light, doing everything i could and more - but what is left of the former me is the name and the outer body, because the inside of my body is all fecked up).  there is so many things i 'want but am not able to'.

Laura recently asked me, if there is anything on my bucket-list that i still might be able to do, but am likely not to be able to sometime soon.  it was the most unexpected, yet the most understanding and caring question anybody had asked me since i got ill.  it showed me the care, the respect for me as a still-valid human being.  the illness strips this validation off the person, and more and more often i became just an invalid, not a 'normal person' any more.  and it hurts...

In exchange for crotches, I was given a three-wheel walker, sort-of three-wheel Zimmer frame.  Fancy: it folds neatly, fits into my car, has a sturdy and rather big (black!) bag fastened with a Velcro-strip (so at least I know I will be able to open and close it; I don't much do buttons any more, and pulling strained zips gets tricky as well), and comfortable break handles on both sides.  Black and chrome - how classy.

So why do I feel so low...?

Freddy decided to serve as a scale-comparison!

I fell again today.  I went to collect the prescription and the medical cert from my GP, then drove to (feels-like-former) work to hand in the cert.  I got home OK, but I was surprisingly tired - after all, I didn't do THAT much driving...  I had to get a bite of some food to take all the lunchtime tablets, and suddenly I was on the floor somehow.  My legs didn't feel right just before, and I had a brief moment when everything around sort-of waved once, and next thing I know I'm on the kitchen floor.  I pulled myself up - was upset, and sore, but it wasn't the first time (well, the 'wave' was), so it's not like I felt the world has ended.

So I ate a handful of tablets, plus a tiny portion of chicken in veg jelly, a very healthy food (as if I was allowed to eat any other kind...), and it was so filling - and I was so exhausted - that I fell asleep on the sofa, around 3pm.  Woke up at 7pm-ish, feeling not very well, but then again I don't feel well so often that there is no longer much point in 'recording' it.  It was half seven, when I suddenly realised that I have a student at eight - which would be OK, except with all the sleep I never managed to 'visit the hens' (a favour I'm doing for a holidaying friend, in exchange for fresh eggs), so I rung the student explaining that I would be ten minutes late, did the crotches-flight to the car and drove to K's place (all 3 minutes drive) to get the hens sorted.  And then, when I got back, I got so violently sick, I felt nearly turned inside-out.  And it's not anything to do with the chicken, nor the water brand (which I just changed today) - I get nausea attacks increasingly often, have to take Stemetil on nearly daily basis, but recently it doesn't seem to help as much as it did before...

And finally, having my 'look at the sky from the garden door' moment (love watching the night sky - it evokes so many memories and images...) I hit my head again, this time against the door frame.  For some reason, I started hitting my head recently: it feels as if I momentarily have no control over the direction of my head's movement, and usually it lands on some hard object nearby.  Or maybe a more accurate description is that I'm loosing spacial body awareness - or at least this is how it feels...

flashing lights
of a toy blue car
in the shopping mall

forgotten childhood
returning in flashes
of memories
hidden deeply
under clouds of
words images resentments

bitter-sweet taste of
tears of pain and discovery
of the life that
could have been
the life that was
the life that is
to be no longer

COPYRIGHT NIKKI DARMAN 13.06.2012

It's so irritating when people say 'you look great' - I know they mean well, but they can't see the bandages strapping my legs from toes to knees, the cuts on my calves caused by swelling trying to bulge through the bandages, can't feel the exhausting constant pain of the right shoulder and the right wrist (I saw professor Harmon last Friday - amazing man and high class specialist in pain management field - who said that this is the stage to see the surgeon and that the wrist has to be operated, while as to shoulder, I might be able to wait a little longer for the surgery), can't feel the constant nagging pain of the abdomen, can't see how every bait of food I take makes me heave when my body tries not to swallow anything...  Yes, I look great - because my illness is invisible, and my face is swollen to look round and full...
When you meet somebody with fibromyalgia, think twice before telling them how great they look.  With all the pain, the look is the last thing that matters...

I started getting 'meals on wheels' - the district nurse decided that I really am not able to cook for myself any longer, hence the pleasure.   It reminded me when, aged 15-16 and in scouting, I was visiting an elderly lady who had 'meals on wheels': she was blind, and my role was to provide company for an hour or so (one of us was coming in once a week, so she had somebody visiting every day).  I loved listening about her experiences in the war, especially as she was in the underground, and while I started getting interested in 'general' history at some later age, I was always fascinated by social history: how the actual events impacted on the lives of ordinary people.

What upsets me is that for all my adult life I completely forgot about this experience, and this lady.  And now, with each box of dinner and small container of dessert, her face stands in my memory more and more clear... I can see the old four-storeys house she lived in, the path from the tram-stop at a roundabout to her house (just 3 minutes walk) all covered in snow (did I go there during the winter only? or is it that winter is the strongest memory, and other seasons will gradually come to me?), the church opposite her house... But her thick glasses, when she would turn her sightless face towards me, and the warm smile hidden deeply in the lines and feathers of wrinkles, are now so clear, as if I saw her only yesterday.  How strange...

The district nurse referred me to Meals on Wheels - I'm getting dinner delivered to home twice a week.  On the one side it makes life easier, and makes sure I eat something cooked most days of the week (the first 'plate' was far too big for me, but it means I had dinner for two days, and plenty of it), but on the other side I feel down for it: yet another step in the chain of proofs of the progressive nature of fibromyalgia.  The fact that the district nurse felt I qualify for the service, and on top of that suggested I should consider installing a personal alarm (a pendant, which can connect one with dedicated line of emergency services in case of a problem: a fall very likely in my case, but also a heart attack, mini-stroke when I'm not able to get to the phone to get an ambulance, etc.), made me feel fairly depressed.  Not sorry for myself, but shocked and sad how much of my abilities I have already lost, and sort of curious how much stamina will I have to keep going, for how long?  And this constant, deadly tiredness, yet waking up at odd hours with a brief bursts of energy - sometimes I manage to have a cup of tea, sometimes (not every day, unfortunately) check my e-mails and even answer a couple.  I love when somebody comes in, but even visits tire me out quickly, and as soon as the guest is out, my eyes just shot solid and there is nothing I can do - except sleep three, four, even five hours.  Fun...

For the last week, literally since Tuesday, I slept on average 20 hours a day - just couldn't wake up.  So I decided that it's ridiculous, and lowered myself a doze of diazepam from 8mg a day to 6mg a day (stopped taking the morning 2mg - stayed on lunch 2mg and night 4mg).  Felt a bit better yesterday, i.e. although I wasn't able to do much, I could be at least half-conscious on the sofa, and only doze off every so often, but I'd say I slept some 18 hours in total.  Today was even better: managed to have two students, so 4 hours or being actually awake sufficiently to teach the language! Big success.  Mind you, finished the last class at 6.30pm and woke up at 2ish am, was so exhausted.  But still!

The only downside is that I already feel the difference in pain: maybe I shouldn't, because the 2mg of diazepam is just a drop in the amount of medication I take - the painkillers and muscle-relaxants - but I feel it the most in the right shoulder (which my physio tried to get to work last Monday, but all my home efforts in exercises ended up in odd clicking noises and even more pain) and the neck.  Another session of physio tomorrow - we'll see what happens with the damn shoulder then...

I managed to have some salad for lunch today, and ever since I feel sick, as if I had a large baloon inserted into my stomack.  I have to remember to call my GP tomorrow and ask, if she got theultrasound results, and what do they show (if anything?). The cancer markers test result should be in next week - I hope it might be a big step towards finding out what is eating me, quite literaly...  In a way, can't way, in a way - wish it was all behind me already...

Wasn't feeling great yesterday, I was cold, hot, sweaty, chilly - eventually decided to check if I had fever.  The thermometer was showing 35.6 degrees, so I check again - the same.  I don't think I was ever so 'cold', yet the sensation was just feeling sick, weak and tired, not cold as such.  But at least managed to eat some dinner: Rachel brought me another plate of morsels to die for (thou I hope her intention is that it is 'to live for'!).

Today had a physio session - it was incredible to see how much less movement I have on the right side than on the left, and after ten minutes my arms and legs were shaking. I thought I would be able to drive back home, but had to sit in the car for a good while and wait to regain some control over my body: it wasn't responding quick enough, so I wasn't safe to drive (even if it's only five minutes distance).

This is really strange: i posted the previous entry at 22.37, but is says 14.37...  is something wrong with me, or with this blog-page???

Had a very shaky day yesterday - my body just wouldn't stay still...  Today, spent entire day resting, and the kids must have felt something wasn't right with me: first, Fredie was cuddled up on my chest, then when Fred moved, Jacky took over and lied down beside the sofa, and right now is curled on the floor beside the chair.  Maybe it's the result of my busy week: I've been seen by various doctors every single day last week, Monday to Friday, and that's tiring.  Psychically and mentally, because each visit is another step in discovering the extend of my body's malfunction and inability to recover...

Rachel brought me dinner - ate it in three goes, but finished the plate.  It was delicious, but full plate is far too much for me, can't eat such amount any more.  Lost nearly a stone (10 kg) in the last four weeks and I feel it.

i was watching a documentary on human body (BBC), where they made an excellent point about one's age: one is created from an egg of one's mother - but the mother was born with all the eggs already in the ovaries, and so those eggs were created by one's grandmother, when she was pregnant with one's mother.  So, the actual age we are talking about should be counted from the moment of grandmother's conception! i always hated putting the year of birth in any social forum, so from now on i can truthfully say i was created in March 1906 - and since i got ill, there are days when i feel my age of 107...