It has been ages since I last wrote...  I had a really rotten summer, with lots of pain, three major kidneys infections, and unyielding functional depression.  Motivating myself to do anything takes much more work and effort than doing it, and it doesn't matter what it is.  The only "activity" I can't wait for is long proper sleep: I manage to sleep very deeply, but wake up every so often with the pain and stiffness "here there and everywhere".

Had another gastric surgery two weeks ago - beforehand, for some four or five weeks, was bleeding quite badly any time I went to the bathroom, so one way or another something had to be done about it.  Was very anxious: the date of the surgery was the 25th anniversary of my mother's death, and we've never really seen eye to eye.  I'm not usually given to such odd thoughts, but this time it was too much of a coincidence for my liking.  Anyway, as usual they removed good few bits, widened what they could and... well, let's put it this way: I don't need to change my diet or anything, the bleeding is gone (for the time-being anyway, added the sceptically pragmatic voice in my head), the "system" seems to work - I should be jumping up for joy.  So why am I not?

Ever since the last general anaesthetic, I feel anxious, on the edge, as if something terrible was to happen any minute.  My dog Jacky must feel it, because she became unusually jealous and possessive of me when others (i.e. the three cats) are around, and demands a lot of one-to-one hugs and cuddles.  And not just that I'm supposed to cuddle her: during the night she makes sure to either hold me - any part of me - with her paws, or lies along me, or cuddles her head into me...  They say that animals can calm you down and it's true: it's only when they are directly beside me that I feel this strange tension in the pit of my stomach, this steel-strong belt around my lungs to ease, and my ears aren't full of the pounding of my heart any more.  I honestly don't know how can people living alone survive fibromyalgia without animals.

It’s May and i was trying to sit down and catch up with my notes for a long time, but “things were happening” and writing was sadly not an easy idea to deal with...

 I had three surgeries within the first three months; a severe kidney infection (so bad i had to have a double-doze of two extra-strong antibiotics for two weeks) between the second and the third surgery.  Just as i was recovering from the third surgery, i had a second kidney infection, another big one.  Towards the end of it, i got vomiting bug/stomach ‘flu – so bad, i had to call for ambulance in the middle for the night.  Was so dehydrated and weak, i wasn’t able to make the five steps to my en-suit bathroom any more, and stayed on the drip in hospital.  A week passed – i was still very weak and recovering – when i started having kidney pains again, sometimes so bad i can’t take a breath for a moment or two.

But the worst is that i have memory problems.  It started funnily enough – i was “inserting” words from a language different than the rest of the sentence, and it could be any of some fourteen languages i’ve ever spoken throughout my life.  I started forgetting words.  Then things like making a cup of tea and forgetting to drink it.  Forgetting to do things i set out to do.  Most recently, a colleague i know well came to the door, and when i opened i knew i know him, but couldn’t remember who he was, and why is he at my door – while we agreed only two days prior that he would come that day and time.  Today, it turned out i didn’t tell my closest friend about a very important meeting i had last week – while all the time i was a bit upset she never mentioned it, especially as it dealt with some very important issues for me...  not to mention nearly broke the fridge trying to open it – from the wring side...

Today, i spoke at length with my doctor about it, and while obviously there are some tests to be done, and she referred me back to the neurologist, she (being as blunt as i always ask and want her to be) pointed out four possible options.  1. Cumulative side-effect of all the medication i’m on for the last four/five years (possible: around 30 tablets a day).  2. Some problems with blood pressure in the brain (possible: suffered blinding migraines until the age of some 25, and now have head-aches again for the first time since).  3. Brain tumour (possible: had one before, when i was 30, i was freed of it thanks to radiation but, as they say, “once a cancer, always a cancer”).  4. Early stage of Alzheimer’s disease.  Possible.  Full stop.  I’m to keep record of “the incidents”, and try to be patient, because God knows how long am i to wait to see the consultant...

Finally: awaiting another surgery in three weeks, a proper dealing with carpal tunnel on my right wrist.  Had six injections so far, but the last two were practically pointless, gave me no pain relief whatsoever.  This time it’s supposed to be opening the wrist and a quarter of a hand and – depending on what seems possible when it’s clearly visible – maybe removing part of a muscle so it won’t squash the nerve, maybe killing the nerve, maybe “twisting and turning” bits and pieces around...  To be honest i don’t know yet, but i’m delighted it’s going to happen because the pain in this wrist is more than often unbearable...  although, considering i have to use either crotches or wheeled Zimmer frame to walk, and that means supporting my weight by holding the handle in the hand – well, my right wrist will be out of action for a while, so i won’t be able to walk.  Absurd as it sounds.  But i will try to write about it next time.

As much as previous surgery ended up in unexpected infection (I'm still waiting to have my toe nail removed, and it still oozes something so pungent, that I won't be surprised if in the end they would have to amputate the entire toe...) - the last one, which ended up to be gastric only, was immediately followed by severe kidneys infection.  Despite all the painkillers I take, the pain is absolutely awful and at times doubling me up with a stub.

They managed to do gastroscopy and endoscopy, remove some blockages on both routes to widen up the digestive track, but the small intestine was so tight, they couldn't even examine it.  So the doctor told me that either what they removed would help with 'using' the digestive tract, or they will have a pleasure of seeing me again to check the small intestine - and, as the nurse said, "don't worry, we have several methods of checking it".  Yippee, gastric surgery number ten looming on the horizon, just give me the date!  No, I'm not happy - in case it sounds like I am...

The nature of depression, and the nature of fear...  Depression to me is the emptiness, the non-feeling: it's not a negative feeling or feeling "low", but rather inability to feel.  It's like when having a very, very sore spot - a bruise, let's say - the pain itself is so profound, that it stops hurting but turns into numbness, which is only occasionally interrupted by a bolt of electric shock of pain... 

For the last few days I'm living in deepening fear, and it turned out that I have rather deep "functional depression" (able to do something in response to direct stimulus, but unable to motivate myself) for a long while now, so five days ago I started taking increased dose of Epilim Chrono (800mg x 2 a day) and double dose of my new antidepressant, Venlafaxine (150mg in the morning).  It's only today that I have first traces of some reaction: how many times I wanted to write down here, and the very task of "jotting down" few thoughts was simply far too much, it was terrifyingly complicated...

And now the combination and culmination of the two: this Thursday, so it's only the 7th of March, I'm going to have the third general anaesthetic this year.  The last surgery was not as 100% successful as the gastro-team hoped, so I'm having total gastroscopy and colonoscopy, to figure out what and where is blocked (or just squeezed into very tiny space - after all, fibromyalgia squeezes everything, intestines including).  At the same time, a second team is going to remove my left toenail, which is covering a serious infection: ever since my previous surgery in February the puss is constantly oozing from under it (now on both sides), and when I change the dressing the smell of rotting flesh is revolting.  Hence, the nail, all the infected tissue + a decent "safety margin" have to be removed.

I'm terrified that after having to stay off my feet, and in particular off the roads (it will be a long time before I get back to driving, if ever), I won't be able to regain the remnants of my independence I still have, and will have to rely on others for everything.  I'm terrified to be left isolated, unable to leave my home except to the garden, unable to just hop into the car and drive - even if for only 10 minutes, but to "change the view", whenever I want.  It was never easy for me to ask - and now I will have to ask every time I need to go see a doctor, and I will be extremely embarrassed making the other person having to wait with me, and waste their time...  And no, I won't be able to afford taxis.  As it is I'm barely getting enough for rent and the bills.  Taxis no longer appear in my world, and I can't see this situation changing as soon as I need it to...  Unfortunately.

Meals on Wheels...  The chap who brings them to my house is so kind, that he leaves it on my front windowsill (the perk of living on a garden level), even if I'm not at home and forget to leave the tiny envelope with the money (€4 per dinner).  It's very convenient, true, and I suppose the nutritious value is healthy etc., thou I can't say it's the top cuisine by any stretch of imagination.  It's a long time now that I wasn't able to eat most kinds of meat (mind you, some of my friends are spoiling me sometimes with such a tasty plate, that I do eat it, even if I know I shouldn't!), but I love fish, and am supposed to eat at least some animal protein, so have a deal with the MoW driver/deliveryman that he brings the fish dinner once a week, whether it's on Thursday or on Friday.

Maybe it's time to simply show you what the meal looks like, and you can make up your own mind.  It's always the same: fish in vegetables plus potatoes, and a dessert for later (the dessert might be a fruit jelly, or a custard, or a trifle, or some fruit topped with a blob of cream - to be honest, I haven't even seen today's one yet, so it's going to be a surprise for me too!).

Yeah, well, as I said - it's not exactly the top French/Italian/whatever-you-like restaurant...  But it's food, and it's cooked, and it doesn't require washing up, so all one needs to do is just shovel it up without thinking too much.  Maybe just so to be grateful to the people who prepared it, to help those - like me - who can't do even this little for themselves....  Thank you, kind strangers!

My recent memory problems, worsening balance, very short "battery-life" (just don't have energy, really) - all of that seems to have either appeared or got worse since the surgery (or if not the surgery itself, then the general anaesthetic).  The worse, and to some extend even embarrassing, is that I can't keep my eyes open: all of the sudden my vision blurs, my eyelids become extremely heavy and my body is hit by a wave of 'muscle-relaxant' (where from???) - and, as I call it, "the lights are off".  I described it as if it was at least few minutes, but in reality it happens faster than my ability to react!  Few seconds, really.  D.P., who kindly helps me with typing since my wrists are too damaged for the honour, recognises it after my sudden slurred and completely illogical comments (last time it was something about a trey of biscuits, apparently - in the middle of dictating her a long list of "article 1, section 2, point 3, Journal of Bills 2004, issue 5, entry 6" - and there was something like ten or more such "addresses"...).  Thankfully she saw through me immediately and suggested, that she has to go home to get keys (which she forgot to bring with her), so maybe I'd like to lie down for that time and cuddle Jacky - no objection there.  When I got up an hour later, I didn't remember any of this - but I was much refreshed and invigorated...

Had a surgery some three weeks ago (large intestine), followed by a really nasty post-surgical infections: had to take two antibiotics extra-strength three times a day for two weeks.  Curiously, the infection spread not only around the stitches (which would be rather natural), but also... under my big toe nail.  The stitches are fine now, but the toe nail is still weeping, so that means the infection is still there.  Was already told that would have to have the nail removed and all the possibly-infected tissue under the nail (plus a bit extra for the margin of safety) remove, so not impossible if it would go down as far as the bone (not my words!).  Lovely future awaits me...

Plus,was already scheduled for full gastroscopy and colonoscopy, under general anaesthetic.  Would love to have it done (well, not 'love' really, but to maybe finally see what is causing my insides to get blocked, and where, and what can be done with it - because as it is it ain't funny no more!).  Except, they had some problems waking me up after the last general hammer in the head, which came only some 4 weeks after the previous one.  The last time, instead of my usual three hours kip approx., I woke up after over seven hours, and with some significant difficulties.  At the moment I'm sooo weakend by the antibiotic, that I don't think I would have much chance to wake up at all, to look at it pragmatically.  Have to try to get stronger first, if I manage...

At the moment, not only the pains and aches (despite the over-thirty tablets which my daily diet consists of) are my day- and nightmare, but I started having my "lights out" attacks again: just at some moment, split of a second more like it, my brain stops following the reality and starts working on its own, as if ignoring me.  I cant keep the eyes open, keep any sort of conversation going, and when I come out of it - could be twenty minutes, maybe couple of houres - I'm so exhausted, I feel like following asleep.and after I realy wake up with a perfect gap in my memory...

Oh, fun!!!

I know you read this. In same strange way I feel your presence, your critical eye cast over my writing, careful dissemination of the style, vocabulary, sentence construction.

I’m sure you know this quote:

 

To look life in the face, always to look life in the face, and to know it for what it is, at last to know it, to love it for what it is, and then to put it away [...] always the years between us, always the years, always the love , always the hours ...

 

Just wanted you to know that I know, and that I’m glad of your presence, even such a distant one.  You may not like all this “mushy” stuff, but i don’t care anymore, i have the comfort of saying what i want to say: i miss you.  At the time, i couldn’t have done anything different, and neither could you.  We both fell victims of the circumstances, the timing, the need to familiarise ourselves with the sudden monumental changes of our separate lives.  Why did it happen simultaneously?   Now, after all this time, i feel deeply sorry that this was the situation.  No part of it was your fault – and had i to live through the same time again, i would have done what i did, i would have asked you to leave me.

 

I just hope that wherever you are and whatever you do, you are happy.  This is why i couldn’t bear to have you stay: because I knew that see me descending into increasingly worse pain, dependency and inabilities, yet not being able to do anything at all to ease it, would not make you happy.  Yes, i was selfish in that:  i knew that in the future, being the obvious reason of your unhappiness was, would be, is too much to cope with. 

But it doesn’t change the basics. I miss you, miss talking to you, being with you, miss air-crossing of our texts, seeing you coming in to the house, i miss your cooking, miss the throw on the kitchen floor, the stars above the front of your hose.  So many things have changed since.  You have no idea – nobody has – how much i would like to share all of that with you.  But you are somewhere else, hopefully happy, and – fortunately or not – one remains the same: there are” years between us” and within us, there is “always the love” and “always the hours” and i can’t be “just a friend”.  I still love you, despite everything.  Always will, i suppose.

I dreamt I died and told you
I may not have been
the best of partners
but I really loved you

my body walked away
until I met the death herself
on a roundabout
she told me to take time
before I decide where to go
I still have ten days she said
to decide if I want to be buried
                                  and where

I had a bath in the preparation room
two Jewish attendants in clean shirts
black waistcoats and metal-rimmed glasses
patiently didn't answer questions
afterwards
                  we were free to go

I knew I died
I wasn't angry maybe sad
but some tried to call
their loved ones
some were furious
cursing the bath attendants
who kept washing patiently

and then the room became suddenly
crowded with kids young teenagers
a plane went down nearby
one of them sat on the edge of the bath
it was nearly his turn when he asked
if I think he could stand up
because his legs are crushed and trapped
I told him he would walk fine now
they didn't know they died

I went back to the house
to watch TV reports of the crash
my mother met me at the door
and half indifferently half disgusted
with my brash audacity to go there
turned me away from the family grave
but it was the telly I went to see not her

so I went back to the preparation room
to keep the others company
they needed me more than those
I shared blood line with

I woke up happier
with just my dog for company
then I've ever been with them


copyright Nikki Darman, 12.01.2013

The last three days passed in a strange daze of 'couldn't-care-less-ing', to the extend that even the dishes managed to pile up in the sink and I wasn't able to put them into the dishwasher.  What's even worse, is that it's only today that I managed to pay the rent: just wasn't able to stay awake long enough to get onto the internet banking and transfer the money. Lame an excuse as it might sound for some, this is exactly as it was.  I had one day - last Thursday - when I managed to stay awake from 10 am to 11 pm; otherwise, for every one hour up I spend 3-4 hours asleep.  And not a healthy, healing sleep at that: pain wakes me up every few hours, but I'm too exhausted to get up, so just try to move and shift to ease it a bit, and fall asleep again for another while.  Have strange dreams thou, very strange.  Last night I had to get up and write one down, or I knew I would continue along the same lines - and I didn't fancy it.

What's tiring when I'm awake is that I keep finding and feeling these lumps - size of ping-pong balls - of hard muscles, hurting as they are, and hurting even more when I start to attack them to break the muscles into something more resembling the 'string' of the muscle fibre, rather than a knot...  Awfully exhausting.

And there is still no legal assisted suicide in Ireland: the brave MS sufferer, who brought her case before the court, lost.  So far.  She might appeal the verdict.  What annoyed me the most was how the judges were 'moved' by her suffering, and how they assured her that should anyone be accused or tried for assisting her, then because of her 'unimaginable pain' they felt the prosecutor 'would take this aspect into consideration'.  Meaning what, may I ask?  That she may ask her partner never to do it, or that her partner is free to help her and the prosecutor would look the other way?  Why can't we decide to be brave for once and put it straight: euthanasia is wrong, because somebody else decides who is to live who is to die.  Assisted suicide is when I decide to commit suicide, and just because I don't have sufficient power in my limbs to administer some fast-acting poison into my bloodstream, or can't take lethal overdose of something - I ask someone else to deliver it to me.  Because if you are fit and healthy, you can do it yourself - but if I'm in constant agonising pain without any chance of ever getting better, then I have to shut up and stick it?  Hello?? Equality???

I do appreciate that some of my 'deeper-beliving' friends may have a problem with the concept of suicide.  But faith is one of these things which I agree to disagree about: I'm delighted for you that you found yours, and that it keeps you happy/strong/etc/etc.  Just accept that you are your own person, and I am me: be delighted for me for who I am, and don't tell me that 'there are miracles', and that all I need is to pray...  We all pray, one way or another.  We all believe, one way or another.  Even lack of religion is a religion.  And right now I really don't feel like analysing my religion (or three of them), or my faith, or lack of any if I so feel.

But I did empty the sink and stacked the dishwasher.  Eventually.

I don’t really like to make any old year / new year stuff, but this time I thought it might be beneficial to show the yearly progress (regress?) of my dearest companion, fibromyalgia.  Last January I could walk with just one stick – now I need zimmer frame on wheels.  I could get up by myself, have a shower, get dressed and eat some proper food.  Now I can do none of these, and to add insult to injury, I can no longer even undress myself in the evening, so when I go to bed I just lie down in my cloths and wrap the side of the blanket of top of me.  I don’t remember when was it last that I slept in the bed rather than on top of it.  With eating, the list of what I shouldn’t eat is far longer than the list of what I’m allowed to; in fact, during 2012 I had six surgeries to keep the lower intestine “open”, plus a gastroscopy, when they had to knock me out and, funnily enough, they found a large sciatical hernia sitting (hanging?) just beside my stomach, so the result is that when I eat, the food sometimes goes into the stomach, sometimes – into the hernia.  And yes, I can tell the difference... 

 

What else is new? I have breathing problems which I didn’t have before; my varicose veins have spread from the calves to entire length of my legs; I lost feeling in the tips of my fingers, especially in the morning – it’s just pins and needles, nothing else; the right shoulder keeps jumping in and out of the joint; and the pain in my legs and my back (which is not helped by the fact, that one of my upper-lumber disks started to ‘click’ very painfully in and out) is so bad sometimes, that despite the fact that my pain threshold is very high – I can’t help crying. 

 

In fairness, if not for my friends and the assistance I get from the local Health Centre (I have assistants coming three mornings a week, to help me get up, shower, and get dressed, plus they do some shopping for me and some basic housework, which I no longer can do myself), my life would be one hell of a real hell on earth.  The strangest thing of all is that fibromyalgia is – by some doctors – regarded as “a condition” rather than “an illness”.  But this “condition” is proving far more difficult to live with than many illnesses that I had a doubtful pleasure to go through, chronic migraines or cancer including.  Yes, I do mean what I just sad: I had cancer before, I survived it and I survived radiation, which to say the least was not a pleasant experience.  And yet, it was and is much easier to cope with and to live with than “the condition” of fibromyalgia.

 

Anyway, for the moment I’m still alive, despite odd times when I feel I have had enough of this circus and I’m ready to go...