Again, the time since my last post is so long...  To be honest, I thought about writing many times, but what discouraged me were slow and nearly insignificant changes "downwards".  But let's start from the beginning.

For few months I was going to a chiropractor, who did manual adjustment, acupuncture and electro-stimulation of the muscles in the back, shoulders and knees areas.  he also convinced me to buy insoles for my boots (can't wear shoes or runners, it's heavy boots only: slip resistant, waterproof, steal toe and holding the ankle firmly - my balance problems are much increased) and for the slippers.  it help a lot, but for a relatively short time only: about half a year.  I'm still able to walk some distance on a good day - but the point is, I can no longer walk on a bad day.  Had to start the application process for a motorised wheelchair - which, obviously, upset me a lot, and since there is a strong link between the mental and the physical aspects of health, without getting into what affected what it suffice to say that from a rather long-lasting 3 weeks) chest infection I developed pneumonia.  Fever, all the muscles and joint are hurting like hell, breathing is difficult and painful, and the cough is from the heels up...  Thank God for my friend and neighbour AKB, who was coming in every four hours with hot drink so that I could take paracetamol... (am after three antibiotics which didn't work - time for old fashioned hot water with lemon, garlic and honey!)

So, since my last entry I got firmly on the one - if not too - steps lower and closer to the end.  Every time it happens I get sad, upset, I go through shorter or longer period of adjustment "why me", "why is it going so fast", "will I manage ... " - my bucket list, of which I managed to tick off some things, but not everything...  And the question - will I manage to get to do few more things before I'm gone?

Although fibromyalgia is incurable, deadly, progressive, debilitating, etc. etc. - one doesn't die of it.  One dies of complications, of related illnesses.  That's why this bout of pneumonia - the first I ever had - is so difficult: because I know that this is precisely what may cause me to kick the bucket.  and although generally speaking I am ready, there are just few things which I need to take care off before I sniff it.  So I just hope it's not my time yet.

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...