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...