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.