Taking a Battering

The winds have been howling all night, palm trees are thrashing and threatening to take off, and my cat Fynn is frustrated because he can't go out - he hates the wind even more than I do. When he gets really desperate to be in the garden he crouches low, ears back, and dashes from the door to the outside stairs. But at the moment we have gale force 8 winds (approx. 35 knots/40 mph) battering and shaking the windows and that's too much for him. Too much for me, too!

"A Case of Chronic Denial"

An excellent and interesting article about 'chronic fatigue syndrome' and the failure of the Center for Disease Control (CDC) to take it seriously by Hillary Johnson in the New York Times a couple of days ago. Now that we know almost for certain that this serious illness is contagious the shortcomings of the CDC become even more apparent. Someone should pay for this!

http://www.nytimes.com/2009/10/21/opinion/21johnson.html?_r=1&ref=opinion

Old Friends (and new ways of connecting)

I enjoyed a special treat this afternoon: 90 minutes chatting with two old friends via Skype. The three of us met as green graduate students at Cornell University around this time of year in 1983. Wow - that was twenty six years ago! Hard to imagine. That was the first year I used a computer; at that time we were required to write all our course papers on the mainframe terminals available in computer labs around campus. I'm sure we never imagined that one day we'd be talking to each other across continents via laptops. For most of the intervening years we've been separated by thousands of miles, only meeting up occasionally. Today Sue and Jacki were together in Boston and took advantage of that rare event to talk to me. I love the way that Skype allows us all to chat together at the same time. Hope we'll get together in person one day!

Breaking News!

This is an exciting day for people with ME. It looks like the folks at Whittemore Peterson Institute (see link at right) have come up with the goods. They've found a clear link to a retrovirus, and it looks like a blood test is on the way.

More details can be found here:

http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf

and

http://www.cancer.gov/newscenter/pressreleases/CFSxmrv

Addicted to Reading

One reason for not writing more blog posts is that I get caught up in reading other people's blogs, or Face Book posts, or the news, or whatever else is in front of me. "I'll just read this" is what I'm thinking, and before I know it a few more hours have slid by. I'm the sort of person who'll sit and read the back of the cornflakes packet rather than eat without reading.

This week I began an on-line writing course based in NYC. This will now force me to write every week, although I know I'm going to spend hours reading the other participants' work too. Our first chat session was Monday evening NY time - which was 2 am Malta time. I managed to get myself up, but then my cats woke up too. Fynn was convinced that if I was up then it must be morning and therefore I should let him out. He proceeded to yowl and push pens and papers off the desk, so I ended up playing with him while trying to participate in the chat (which, fortunately, was written). Actually I'd imagined that 'chat session' meant we'd all be talking to each other and there'd be a row of video faces on my screen... but it seems technology hasn't quite come that far. Given the cat problems, not to mention problems arising from getting up at 2 am, I think I'll skive future chat sessions. After all, I can still read them later.

Orthostatic Intolerance

After a few good rain storms we're having perfect weather right now - if I could freeze Malta's climate at any one point in the year, this would be it. Today we have blue skies, a few puffy white clouds drifting here and there, 25 C, around 70% humidity (lower would be ok too), and a light east northeast breeze. I'm enjoying the weather from my patio and the couch, but frustrated because I had really hoped that with the cooling weather I'd be able to get out more. As it is, on-going dizziness has kept me tethered. I may have worked out the problem: orthostatic intolerance (OI) is a chronic state for many people with ME. OI is a condition in itself (there's a reasonable discussion of it on Wikipedia), but it's just one more of many symptoms experienced by MEites. One solution to chronic OI is to drink a very large amount of water, more than two liters per day. Now, I'm only 5'2", and I find it quite challenging to drink that much water - not to mention the hassle of keeping track, and all the bathroom breaks, and the vast amount of toilet paper used up in the process! Oh, and the cost of water - here in Malta tap water is undrinkable, and I buy mine in 19L bottles which are delivered, collected, and reused. Nevertheless, now that I'm aware of the problem I'm chugging the stuff down just as fast as I can, and hoping I'll be back on my feet and out taking afternoon walks again soon.

What's for Dinner?

When you spend as much time as I do taking power naps on the sofa, there's not much time left over for less exciting activities such as cooking and doing the dishes. When my blood pressure is having a good day and I can keep myself vertical for at least an hour at a time, then I cook a big pot of something satisfying, with plenty of protein and a garden full of fresh vegetables that take half an hour to chop up. This will last for a couple of days. But there are in-between days when the pot is empty, and having a snooze is a more attractive proposition than doing either the washing up or cooking. Unfortunately my appetite hasn't noticed that I'm expending less energy and still makes urgent demands on my attention.

At around 1 pm today I wandered into the kitchen and realized that the pile of dirty cookware and utensils left me few options for lunch. I resorted to my emergency tuna fish salad: quickly washing my one good chopping knife and retrieving the only clean board left out of three, I chopped up half a small red onion, a couple of tomatoes, and a third of a yellow pepper. On top of these I emptied a small tin of tuna fish in olive oil, a generous sprinkling of pumpkin seeds and sesame seeds, and then a spoonful or so of capers. When I remember I add some nori flakes - but I forgot those today. Lunch ready in about ten minutes.

Do you have any quick and healthy meals to share? Healthy for me means no bread, no fruit mixed with vegetables, no preservatives.

Now, what's for dinner?!

Picking up... cooling down.

After my 'crash' two weeks ago I'm gradually picking up again - I won't say "returning to normal", as there is no "normal" for me any longer. At least I'm not spending all day on the sofa (just a couple of hours), and I've been able to go out for a walk along the sea-front again.

Evening walk along the Qawra sea-front.

This morning I was browsing the "Life as we know it" blog and found this link to an "open letter to those without invisible disability or chronic illness" which I think is worth sharing: http://notdoneliving.net/openletter/id

Tourists are still here in abundance, enjoying breakfasts in the open and lining up for the buses; the locals are still parading on the sea-front on cool Sunday evenings - I know, because I can see them from the roof of my flat. But we've had a few short rain storms, the wind is up, and temperatures are dropping rapidly. I call it the start of the rainy season; 'autumn' or 'fall' doesn't quite fit here, as there are no leaves turning yellow, and this is the season when farmers begin putting compost on the fields in preparation for planting.

Another Qawra sunset photo!

Transitions

I passed a neighbour yesterday, an old woman with white hair, wearing a loose shift covered in flowers, starting to bend over and shuffle. “It was cooler today” she remarked. If it was, I hadn’t noticed. I’m still changing my shirts three times a day, and you probably don’t want to hear about the various skin problems I’m experiencing thanks to all this heat and humidity. But there are other signs of summer coming to an end: other neighbours packing shopping bags with bits and pieces of their belongings, stuffing them into cars for the short but traffic-clogged drive back up the hill to their winter homes in Mosta or Birkirkara or Balzan. The group of young people in the next-door flat, acrobatic performers from Bulgaria and the USA working here for the season have left. They’ve been a lively and friendly presence during the summer. I went out to my local mini-supermarket at 6 in the evening – unthinkable due to the hot sun just a week ago. I feel like I have evenings back again, though just for a short time, before they disappear into the night of winter.

Relapses are made of this…

Anyone with ME knows that relapses are a fact of life. I should have seen it coming, the gradual increase of fuzziness in my head a warning sign, but optimism always wins and two weeks of feeling better (if not exactly ‘normal’) had led me astray.

Yesterday began almost as usual, except for feeling tired as I unzipped the mosquito net. The dizziness began unperceived, until at a certain moment I felt as if I’d tried walking around wearing a pair of half-inch thick glasses belonging to a myopic friend. From there I began to wonder if I’d been practicing my whirling dervish act for too long, and after a short phone call at around 10 am I had to give in and lie down.

I call these “lost days” – the days when I remain horizontal the whole day. If I’m lucky I can read a little. Mostly I sleep until the feeling of two bottles of wine too many along with a blow to the back of the head with a blunt instrument has begun to wear off, leaving me with a simple headache and low-grade fever.

Ice Cream Heaven

I must admit to a passion for very good ice cream. When I was young my mother made ice cream at home using tins of sweetened condensed milk that I eagerly dipped a teaspoon into when I could get away with it. She had no special machine, but after an hour or so in the freezer, the tray would be brought out again, the icy mixture beaten in the Kenwood mixer, and then placed back into the freezer. The soft-serve ice cream in a cone with the “99 flake” from the summer ice cream van was a novelty, but the taste didn’t compare to my mother’s.

In the US my favourite ice cream is Ben & Jerry’s with wonderful wacky flavours such as “Chunky Monkey”, “Cherry Garcia”, and “New York Super Fudge Chunk”. Hilo Homemade in Hawaii was another favourite with flavours adapted to local taste: ginger and green tea among them! Here in Malta there’s clearly Italian influence at work; although the supermarkets are full of commercial brands of ice cream, locally made ice cream can also be found in the holiday resort areas. Here where I live – which could be either Qawra, Bugibba, or St Paul’s Bay depending on your interpretation of local maps – a narrow side street hides the best ice cream parlour I’ve found: “sotto Zero”, a gelateria making their own artisan gelato fresh daily on the premises, in full view of happy customers.

Sotto Zero is about twenty minutes’ walk from my flat, going at a slow pace. I can only get there when my energy levels are up and I’m feeling better than usual. One evening, a couple of weeks ago, I set out and had to give up half way there – my legs just wouldn’t carry me, and, disappointed, I had to admit that forging ahead was not in my best interest. The evenings I do make it, and can enjoy the delicious hazelnut and chocolate “Baci” gelato, I enjoy a double treat: the ice cream, and the pleasure of knowing I was well enough to make it there.


Hmmm, not sure about the blue smurf, but their vanilla is made with eggs and real vanilla bean - delicious!

Where in the World?

If you could choose to live anywhere in the world, where would you like to be? Why do you live where you are now? Is this where you were born and grew up, where your parents, grandparents, cousins, aunts and uncles live? Or have you been transplanted here in the search for work, for security, for a better life?

But if you could choose, and had the freedom to move, what would the criteria be? A good job, never mind the environment? Or clean air, quiet country lanes, a mountain view? Maybe the excitement of city life with theatre, concerts and shopping close by?

My own itchy feet are beginning to tingle again. The flat I'm renting is in the process of being sold and I'll have to move out around six months from now. I thought I'd just look for another flat close to this one - until I saw a notice of planning permission sought for the building next door. Construction in Malta is no joke, and is impossible to avoid. It's noisy - really, really noisy - thanks to the machines used to cut limestone blocks and tiles; it's dirty for the same reasons, the thick grey dust coats my windowsills even now; and it's slow and never stops - even in this recession. Ernle Bradford, writing about the Knights of St John in 1972, noted "Malta is in fact a giant stone-quarry... and from neolithic times onwards it seems as if this mass of easily-quarryable stone has induced a paroxysm of building in the island's inhabitants." (The Shield and the Sword: Ernle Bradford, p.204)

If you have the perfect place in mind: peaceful (in all senses of the word), with green trees, a blue ocean, glorious mountains, and - of course - affordable accommodation, let me know where it is!


Sun setting behind Gozo, viewed from Qawra, Malta - not as peaceful as it looks.

Where were you on the 31st July 1966?

I'm not a football fan, but the sense of excitement watching the World Cup final between England and Germany, which went into overtime, on that sunny summer Saturday afternoon has never left me. I was at the house of a school friend in the leafy green sleepy town of Harrogate, back in the days when I could take off for the afternoon on my bike, no questions asked.

The years and other World Cups slipped by without my noticing. It was only in 2002 that I became aware of the international soccer tournament again, this time because I was watching in the compound of UNTAET - the UN mission to East Timor. There were supporters for every team in the audience around the TV screens, always someone ready to cheer on their countrymen. I managed to repeat that experience while working in DR Congo in 2006, surrounded by MONUC peacekeepers.

In 2010 the World Cup will be held in South Africa. Hundreds of thousands of South African children will be watching the matches at the stadiums and at home on television. That thrill and exhilaration will be something to remember for the rest of their lives.

****************************************************

Football for Peace: teenage girls and boys from different villages get ready to play in South Kivu, DR Congo, 22nd September, 2007. Most children in African countries play in their bare feet using a football made from plastic bags tied up with bits of string.


The girls' team with their coaches.



The boys' team is ready to play.



Only one of these girls is wearing football boots.



Opposing girls' teams line up: note the state of the pitch!

Buses take energy

About once every four to six weeks I feel like I've saved up enough energy to undertake an activity more demanding than my usual routine. This always, without fail, ends in another crash - but I go anyway. Yesterday I took the bus into Sliema, a 25-minute bus ride from here. There is actually a printed schedule for this service, posted up at the bus stop. I arrived ten minutes early, because you never know your luck. The bus came ten minutes late. I sat next to my neighbour, an American who lives in Paris and is working here for the summer at the Mediterraneo Marine Park which the bus passes on the coast road towards Sliema. He and two other park employees rang the bell for their stop. The driver, ignoring the bell, rattled past and only slowed down several hundred yards later. The three young people were not amused, but didn't waste their time complaining.

Two hours on, well into the heat of the day, my shopping done and visits concluded, I headed for the bus stop at the Sliema Ferries, only to see the bus I was hoping to catch pulling away - on time, of course! The next bus was due in twenty minutes. It never showed. The scheduled bus after that finally came along ten minutes late. The driver must have done his training in a dodgem car and I seriously wondered if we'd make it back to Qawra without hitting another vehicle.

My brain was fried for the rest of the day. For hours I gazed stupidly and unproductively at the computer screen instead of taking a proper rest. For dinner I ate half a packet of corn cakes with butter instead of eating a sensible salad. When I went out to drag in my unwilling cat from the garden I almost got into a fight with a neighbour because I had difficulty explaining that I had not done what she thought I had done... and now I'll begin saving up my energy for the next escape from my prison with a view in six weeks' time.


Maltese bus - photo taken by a friend visiting in January.

Cat Companions

My two cats, Fynn and Rushdie, have totally different characters. Fynn, the younger one, is totally a morning kinda guy. Up at the crack of dawn, meowing outside my bedroom door, he can't wait to get out into the garden below and start enjoying the day. Rushdie doesn't do mornings. She ignores Fynn, ignores me. Highly communicative, affectionate and lively later in the day, the early morning finds her still dozy on her favourite armchair.


Early morning yawn from Rushdie.



Fynn chasing the laundry.

Good Companions

Polish Couch Surfer Writes Malta Blog!

My two Polish Couch Surfers moved into their own flat last night. One of them, Peter, is a 21 year-old student of International Relations and has begun writing a blog about his experiences here in Malta. I often find it interesting to read about what other people find quirky and strange in a place that I know well. If you're interested in such musings too, Peter's blog can be found here: http://www.maltasmellsnice.blogspot.com/

I'm impressed by his writing skills in English. I wonder how many British, US or Australian 21 year-olds can write as well in a second language? The general lack of second language skills among young native English speakers is a sad indictment of the arrogance of the English-speaking world.

Hot and Humid

This is the time of year in Malta that reminds me of Timor. I'm pouring sweat just sitting still. Yesterday I was out for my fortnightly trip to the supermarket in Birkirkara (often written B'kara) with my friend Lenore, and we were reassuring each other that the end of summer was in sight, "only four more weeks of this weather", and "the sun's setting earlier these days". Yes, I complained all winter about how cold it was, and now I can't wait for summer to end! But at the moment I'm stuck indoors most days from around 9 am until 7 pm because the sun is simply too strong and too hot for my body to take - even equipped with dark sunglasses, hat and parasol (well, my umbrella). Roll on September!

The Elephant in the Room

I really, really need to get into the habit of writing short blog posts - if not, my blog will simply shrivel up and disappear, just like I'm doing. My challenge is to find a new direction for the blog. When I began it I was working in Rwanda and fully expected to continue living the interesting and challenging life full of great photo opportunities for some time to come. The purpose of the blog was to share some details of that life with family and friends, and to avoid writing those annual e-mail messages to everyone, where I tried to cram everything into one letter. I don't actually (in spite of recent posts) want this to become a blog all about myalgic encephalomyelitis - I'd like to get beyond that, even though it's the elephant in the room of my life.

An Investigation into the Cognitive Deficits Associated with Chronic Fatigue Syndrome

For anyone interested enough to plough through this research report, it goes some way to explaining why I'm unable to work, even though I look ok:

http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=19452031#top

Just Four Quid!

Once in a while someone asks "when are they going to find a cure for ME?!" - well, the cure won't be found without bio-medical research, and the research won't get done without funding. So there's a big campaign going on in the UK right now to raise funds for research. Details about how to make a donation can be found at: http://justfourquid.com/

The idea is that if each person in the UK estimated to have ME (a quarter of a million people) were to give four pounds towards research, then a million pounds would be raised. If you know someone with a UK bank account, or you have friends in the UK who might consider donating four quid towards research, then please send this message on to them, and ask them to keep sending it on to others! All we need is for 250,000 people to give four quid each!