Chaos to Cosmos
The path from chaos to cosmos was discovered by telling one's life story

Friday, 21 May 2010

Paying dearly

Why, oh why, when I had such a pleasant day out on Monday, have I had to pay so dearly since?

A friend picked me up in her car, so at least I didn't exhaust myself with the usual 1 mile route march to town and, we had a great day. Starting out late morning, I spent around an hour just sitting, while she did her exercise class. I moved from a chair, which was uncomfortable for my back and neck and, because I started getting pain in my legs and sat on the floor, resting my back against the wall to mitigate the problem.

We then went to the famous junk food emporium with the arches for lunch, as a treat. For a couple of hours in the afternoon, I sat and chatted at our fibromyalgia support group. I got up once to get a cup of tea. I ate one biscuit. Such an outing shouldn't cause too much problem, should it?

Huh! No, a couple of hours is more than enough for me, so that by the time we left the fibro group I was so exhausted my balance was badly affected. (As I only had to walk across a tiny car park, I didn't bother with my walking stick.) So I managed to trip down a curb and jarred my knee, which has hurt since.

And just one treat: one meal's deviation - not even the whole day, because I had all my usual supplements, healthy breakfast and evening meal - from my usual mega-roughage plan is still causing utter havoc and it's now Friday.

Missing just one portion of my dynamite-strength fibre, on Tuesday, I couldn't go to the loo at all. (The same thing has happened if I've forgotten to put a sprinkling of linseeds on my salad, so I keep them out on view now.)

By Wednesday afternoon, I felt crap: much more lethargic than usual, even more nauseous than usual, even more bloated than usual - my stomach looked 9.5 months pregnant - and I could actually feel my ankles swelling up.

My pain levels have increased, particularly a pounding headache - so bad it's affecting my vision and has mostly kept my head firmly stuck to the pillow - that hasn't completely gone all week and pain in my joints, which could be swollen (although not visibly so) with the bloating and achyness in muscles that feels like I haven't eliminated my toxins from them - which basically, I haven't.

By late evening Wednesday, I finally managed to move something, but it was difficult (I joked that I'd thought I was going to need a midwife for it) and yet it was still not thorough. It took until the early hours of Friday morning to catch up on the missed day, but it's still not right and definitely not clear yet - another clue to which is pressure that's increasing my irritable bladder problem.

Personally, I think there has to be something seriously wrong that just one deviation from routine can cause a whole week's havoc and constipation this severe and, this is something I plan to discuss with my GP.

Saturday, 15 May 2010

Life on hold

Thursday afternoon, I went out - to a meeting of my pain support group - and, once more, had a disturbed night and very little sleep afterwards.

The pain in my neck, which becomes acute after having to hold my own head up for an hour or so, plus the pain in my legs, which likewise is always triggered if I have to spend any time in an upright position, even sitting, had kept waking me.

Friday morning, I woke with the sore throat, feverish headache, sore muscles and general flu-like malaise that always follows any outing. Was only conscious for around 3 hours before I began struggling to keep awake, my eyes gritty, tired and having trouble focusing. As I couldn't even sit up, I lay down to watch TV and promptly fell asleep. Not that I felt any better when I woke up, nor the next day.

Is this a flare or a particularly bad time? Nope, this is just normal for me now.

Last week on Thursday, I dragged myself out - not very far: 500 yards maybe - to vote and walking back I felt so exhausted, in pain and ill I really wasn't certain that I'd be able to make it. Got home, collapsed in a heap and went to sleep.

On the Friday, I had a medical appointment, which required me to walk over a mile. Doing so was a torture of pain and exhaustion and when I arrived it took a good half hour (I was early) of resting, drinking copious cups of water to cool down from the hot flush that had me overheating, sweating, with my head pounding and feeling so nauseous I really didn't think I was going to get through it without puking or passing out. That put me out of action for the entire weekend.

Even earlier in the week, I wasn't sure I'd be up to another outing on Thursday and, to be honest, if it hadn't been for the fact that this is only a once a month date and I'd missed the previous month, I probably wouldn't have gone.

And this is still simplifying and glossing over 1001 other symptoms that I just feel too ill to take the time to describe fully - amongst them dizziness, lightheadedness, unsteadiness, trembling, not to mention stomach pains and another recent battle with the constant constipation, despite my vegan wholegrain over 5-a-day plus psyllium husk supplement roughage regime.

Today I have pain in my back and my chest again in addition to the nausea and flu-like symptoms. I've also been invited to a charity open day - a charity that helps me, so I feel duty bound to make an effort - but once more I really don't feel up to going out. Or, to put it another way, if I do push myself to go, I'm not sure I'll be able to manage my next outing to the fibromyalgia group on Monday, which will also be beneficial and that I've also missed for several months.

More than one outing a week is too many. This is something I proved last year when I did a course that was supposed to teach me how to deal with my chronic illness and still had to go to doctors' appointments during the same 6 week period. It took me months to recover from that and my tolerance certainly hasn't got any better since. And, while my pain levels rise to above excruciating if I get cold in winter, the warmer it gets in the UK - with the humidity remaining up in the 80% and above bracket most of the time - the more sick I feel.

All I can do is to live in hope that I might return to more manageable symptoms in a warmer, drier environment one day. In the meantime, my life is literally on hold, but unless you've actually felt this yourself, I'm not sure how I can explain adequately just how desperately unbearable this feeling is.

Monday, 10 May 2010


The Rhine from Lorelei

Various views at least two from Rüdesheim am Rhein

Some time in 1985, I spent a week in Germany in the area around the Westerwald, Frankfurt, Wiesbaden and doing the touristy stuff on the Rhine and visiting Rüdesheim. Most of these faded images are from a chocolate box village the name of which I don't recall.

Wednesday, 5 May 2010

Un Reflejo del Cinco de Mayo

Un Reflejo del Cinco de Mayo 

Balu with his head in the clouds: the fluffy cloud blending into his fluffy ear.

Tuesday, 4 May 2010

Temple of Olympian Zeus

Temple of Olympian Zeus

Hadrian's Gate
Cats at the Temple of Olympian Zeus
It wasn't long ago that, by purely happy accident, I came across a video of Syros that caused me to recall my visit to Greece in 1985. Yesterday, also serendipitously, I came across a post with some beautiful photos of Hadrians Gate and the Temple of Olympian Zeus at Costas Tzagarakis' Nature Digital. Once more, I remember walking around the Temple of Olympian Zeus when I was in Athens in 1985. I got a quick shot of Hadrian's Gate from across the road, but what I remembered most were the 30 or so temple cats. Do you think Greece is calling me back or something?

Total Lack of Empathy

Last night I had to lie down because I felt ill. I'd had a couple of nights lighter on sleep than normal and, as a result, my eyes were even more sore and weepy than usual. I tried to watch TV, but even that proved too much, so, despite having had an afternoon nap, by 8 p.m., I couldn't even sit up because I felt lightheaded, nauseous, hot and cold and so dizzy I needed to cling onto the floor.

So I lay down and went to sleep. I slept, more or less, right through 12 hours, until 8 a.m. this morning, when the cats wanted breakfast. I forced myself out of bed, because I needed to the loo mostly, to feed them and get my own breakfast. Even though I didn't really want to eat, I knew hunger would make the symptoms worse. Besides, I've had 15+ years practice at forcing food down me, even when I feel dreadfully nauseous. Most people wouldn't. I did this as quickly as possible, so I could get back to bed, because I feel absolutely crap.

As well as general malaise and unbelievably awful level of nausea, today I'm shaking like someone who's had too much caffeine (I haven't); I ache in muscles, bones and joints; I feel like I have the flu (I don't); I have a feverish headache and I can't even sit up in bed, because I don't even have the strength to support my own head. Any stimulus, including noise, makes it worse. I need the light in the room to be relatively dim. The only way I can keep the desire to throw up down to just bearable, is to not move, so all I can do is to lie as still as possible.

But my mother didn't like it because I did not respond enthusiastically to her as she was whittering on about something that had absolutely no relevance to me - that she'd burst into my room uninvited to do. She thinks I'm rude and wrong for not being interested in this and storms off in a huff, slamming the door loudly, as though she's been affronted. It's not the first time, by far. She knows what I have wrong with me. I've given her enough literature that, by now, she must have a fair idea of the general symptoms. She certainly knows that my symptoms NEVER go away, but can get worse. It doesn't even occur to her that I might be feeling too ill to be interested. Narcissists and psychopaths lack empathy.

Saturday, 1 May 2010

Fibromyalgia makes your eyes go funny

Cat in glasses
"Everything is slightly blurred, sort of misty, as if you are looking through a mild fog. The symptoms started slowly and at first weren't there all the time, it would be blurry one day and then it would go for a few days, but now it is a permanent thing and I simply can't focus clearly. I also have these terrible dry eyes, and wake up in the morning feeling as though my eyes are full of sand, stuck together and gritty." 
My right eye is often sore and gritty and gives me a constant "tick", as I involuntarily blink my eye, over and over, in hopes of clearing whatever it is that's irritating it. Of course, nothing is, so it can't be cleared. My left eye, on the other hand, often weeps copiously for no good reason. And every morning I wake up with them encrusted and sticky and am unable to focus until I've washed my face and eyes. The only thing that clears it is naturally antiseptic tea tree wash.

These symptoms wax and wane in severity, but they've been going on for years. Any exertion will make them worse until they badly interfere with my vision.

Sometimes it's headaches or light sensitivity that cause disturbances. Sometimes I can only read for about 30 minutes. Sometimes it's so bad I can't even look at moving TV images. Even just the scrolling movement of a web page can cause me to become dizzy and nauseous, so I can't even skim read, let alone pay proper attention (if the fibro fog lets me take in new information.)

Years ago I became almost completely night blind and long before I stopped driving all together, I stopped driving at night, because I just could not see where I was going well enough to keep up with the speed of the traffic and, oncoming lights would totally blind me so I'd have to slow or stop.

At my last eye exam, I "failed" at the peripheral vision test and trying to follow the random dots, gave me a headache, made me feel dizzy and nauseous; I also have permanent floaters and black spots in my vision. Glasses are seldom comfortable and can give me a headache and, my prescription has been changing very rapidly in the last few years. Other times, my eyesight just goes blurred and stays that way for as long as it wants. Glasses make no difference. Sometimes I can make out shapes of words and images I know, but I'm not able to read anything new.

These symptoms are some of the most frightening.  

Thursday, 29 April 2010

Humidity is my enemy, volcanoes are my friends

Recent events seem to confirm this and, what's more, have given me a few ideas on which to ruminate ...

Now I can remember the one and only properly hot British summer of 1976, when I worked for North Thames Gas in Staines, Middlesex, and, due to the heat, women were given a special dispensation to wear shorts in the office. It was unheard of in Britain at that time and I still howl as I remember some of the ex-army khaki jobs some of them wore!

What I also remember is not being able to stand the heat and constantly feeling nauseous and drained of energy by it in the humidity of the UK. Yes, I know there was a drought and a hosepipe ban, but there were also periods then and in other years, where it was just humid, uncomfortable and unbearable.

The only time I suffered worse was on a trip to Florida in 1980, because even though I was "relatively" healthy back then, I could bearly walk 50 yards in the extreme humidity there - which was given out on TV as being 97 - 100%.

With fibromyalgia that's how humidity affects me all of the time now.

This morning, the humidity here on the Costa del Geriatrico (southern UK) was also once again up at 100% and the pain in my hip was back up to screaming pitch. It's really bad when I can't even lie on it. I certainly can't sit on it nor stand on it and the pain it generated - from my waist to my toes - when all I did was walk to the kitchen, was way, way, way off the usual pain Richter scale.

And, in addition, my neck hurts so badly I can't even get that comfortable lying down with my special neck pillows, my shoulders ache, there's a pain running down the back of my arms, my knees ache, my joints feel stiff and swollen, the pain in my lower back was so bad it was making me involuntarily moan ...

It's so bad, I'm having real difficulty concentrating, but if you'd run over me in a truck, I truly could not feel more battered and beaten than I do now.

This is an enormous contrast to last week, when I managed to walk to town on Friday to collect a prescription - the humidity then had been an ideal 51% - and, on Saturday (it was 59%), I'd gone for a long stroll to the fair and back.

Normally I just would not be able to go out twice in one week - one outing would be enough to exhaust me and raise my pain levels severely for another 5 or 6 days - and I certainly wouldn't usually make it both ways.

Saturday's walk hurt - walking at all hurts because of my hip and I'd begun to get overheated as the humidity rose toward the end of the day - but it only made me pleasantly tired the way you want to feel after a nice long walk.

In fact, I felt so relatively pain and symptom free after those outings that I wondered if my enormous super-mega fibromyalgia flare - that I've been suffering pretty much ever since I set foot back on UK soil in 2008 - might have finally abated, but this turned out to be merely wishful thinking.

On Tuesday this week, when weather was getting back to normal British humidity levels, I only went as far as the local corner store and that was utterly exhausting, as though I'd struggled through a vat of molasses, dragging a 1 ton weight. When I got home, I had to lie down and was asleep very early.

How many times have we had humidity as low as 51% here?

Just that once. Which reiterates, once more, what I've been saying, over and over, for years - that the only possible way for me to keep my symptoms under some control is to live in a relatively warmer and drier climate.

In all my 16 years in Tenerife, I was never so exhausted by a heat and humidity combination. In the UK, I can be overwhelmed by it and the temperature has bearly reached 15 degrees centigrade. In Tenerife, my brain wouldn't start melting until 35C and I wasn't even comfortably warm until 25 degrees. And pain like I have today, I would only have on days when it was incredibly humid, i.e. when there were severe, monsoon quantity, storms and rain.

This has also got me to wondering - since Tenerife is home to the world's third largest volcano and, since the warmer, drier weather here last week did coincide with the presence of the ash cloud from from the Icelandic volcano - whether the presence of sulphur in the atmosphere (which we know is drying: it's effective against mildew) might have been the reason for my temporary improvement.

Maybe I should also be specifically looking for another volcanic landscape in which to make my future retirement home? (If I live that long.)

There may be more to it than the fact that sulphur / ash would dry out the air. I shan't pretend for a moment to understand the science, but consider:
  • Volcanoes spew out a lot of dust and gases like sulphur.
  • Sulphur is an essential element for life and is found in two amino acids: cysteine and methionine.
  • Cysteine's antioxidant properties are typically expressed in the tripeptide glutathione.
  • Glutathione is the food for the immune. As an antioxidant, glutathione is essential for allowing the lymphocyte (immune cell) to express its full potential. (without being hampered by oxiradical accumulation.)

Friday, 9 April 2010

Cruelty to Children

imageAs this spoof NewsBiscuit story infers, in Britain, one can become snowed under by a deluge of charity collection bags. Far too many for even the most wasteful, compulsive consumer to fill.

So, I know these bags can seem like a bit of a nuisance, but I was frankly shocked and appalled by my mother's reaction to one. The collection bag was from the National Society for the Prevention of Cruelty to Children (NSPCC), whom I feel are a perfectly worthy cause. It's always saddened me that such an organization is needed in a supposedly civilised world, which probably indicates that we're not civilized at all. 

Anyway, as she read who it was from, she spelled "N, S, P, C" out loud to herself, missing off the final C, but there was no doubt who it was from.

Then she declared, gruffly, "Oh, I can't stand them", hastily screwed it up and threw it away. There was really notable venom and anger in the way she did it too. The fact that my upbringing can be described by the NSPCC's definition of emotional abuse couldn't possibly have anything to do with it? 

Monday, 5 April 2010

Confidence and subtlety in inverse proportion

One of the downsides of living as a single female in Tenerife was the constant unwanted male attention. I'd added glasses, I'd died the blonde hair back to brown (then left it unkempt), I'd ditched all the makeup and covered up all of my bits in t-shirts that would happily double as black sacks. In the end, by comparison, I'd have made even the most butch lesbian look frilly, girly, feminine.

Did it deter the buggers? Not a hope!

They were incapable of taking hints and ignored direct negative responses.

It didn't matter how old, fat, bald, lacking in teeth, or married they were, even the village idiots truly believed they would be doing me a HUGE favour by suggesting that I needed a man, a partner or just a damn good shag.

Subtlety was not one of their strong points, even if confidence was.

It's one of the few things about living there that I don't miss.