A terrific internet-savvy friend has found my links and I'll get them up again soon. I've been busy with visiting Couch Surfers and I'll write about that just as soon as I get a photo from them! In the meantime, I thought I'd post this quote from Dr Nancy Klimas, in the US, just for those who may still think ME isn't a big deal (though I'm sure all my friends are convinced by now!):

“My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have HIV. But CFS, which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”

Click here for the link to the entire article in the NY Times.

I was on the phone for almost an hour, gazing out the window the while, watching nothing more than a couple of ships. Turned to go make my breakfast, and, a mere 15 minutes later as I'm setting the plate on the table by the window, look up in shock to see this enormous rig passing by. It is far larger when seen from my window than how it appears in the photo (I went up to snap these shots from the roof).

And just in case you're wondering - I know it looks lovely and sunny, but the temperature today is 15C/59F, and indoors without heating it feels quite chilly!

I generally need to rest - i.e. listen to a meditation CD or sleep - for at least an hour, often two, in the early afternoon in order to be able to function for the rest of the day. Today I persuaded myself that the rest wouldn't be necessary, and instead I'd do some work re-arranging my blog. Well, my tired brain has just managed to delete all my links - a collection that has been added to over the past five years. It's gone - just like that! I'll be sure to take my nap tomorrow.

Sold my first calendar! I'm thrilled!

The New World of Self-Publishing

There’s been a quiet revolution out there in the world of publishing. I remember attending a one-day seminar a little over ten years ago explaining all the ins and outs of finding an agent and getting published. “Never,” the presenter told us, “never use a vanity publishing house”. It would cost money, a great deal of money in fact, and we were wasting our time. Our work would not be taken seriously and would not be marketed.

Take a giant leap forward to the internet age and now anyone can publish their own work practically free of charge on the internet, all thanks to Lulu.com. Lulu is now an established and recognized way to publish. Books originally published on Lulu can, if successful enough, get picked up by the major publishing houses and republished. With Lulu you, the author, do all the work: design your own layout and cover and do your own marketing. It costs nothing – although Lulu does provide publishing “packs” for a fee that will guide you through the process and ensure a more professional looking end product. How is this possible?

Potential buyers of your product are guided to your product page at Lulu.com and when a product is ordered a copy is then printed and shipped to the purchaser; i.e. print on demand. On individual copies the author makes almost nothing. If, however, an author is confident of large sales and has a marketing outlet (a book shop or stationers, for example), the author can order large quantities at a reduced price and sell them him or herself, thus making a little more money in the process.



Personally I think it’s brilliant. We are freed from the tyranny of publishers and no longer need to even consider forking out vast sums of money to those rather shady vanity publishers. One good friend of mine has published his memoirs of working in the Sudan – “Even the Dead are Coming”, which you can find here:
http://www.lulu.com/product/paperback/even-the-dead-are-coming/5302779





I’ve had a shot at making some of my favorite photographs into calendars for 2010. I love my cats and have been taking dozens of photographs of them ever since they moved in with me. The best dozen are to be found on this cat calendar:
http://www.lulu.com/content/lulustudio-calendar/nickys-cat-calendar/7589282



I also put together a selection of my favorite photographs from Africa (many difficult choices with this!), and the calendar includes pictures from Rwanda, DR Congo, Kenya, and Senegal. You can find the calendar here:
http://www.lulu.com/product/calendar/nickys-africa-calendar---us-edition/6108265


All the photos can be previewed before you purchase. Both calendars have US holidays. If you would like one with UK holidays please let me know and I’ll put it together. Much to my annoyance an Australian version is not an option. Sorry!

The View From Where I Sit

We're having one of those days I love here - a balmy 19C (66F), sunny, and only the lightest of breezes. So I dug out my camera and snapped a few shots to show you what I'm looking at as I gaze out the window.

To my right the view is partially blocked by an apartment building, but partially hidden from view beyond it today is what looks like a fishing vessel that has been sitting there for several days now. The ships come and go. I enjoy all the traffic, from the tiniest one-person one-sail boat, to the ginormous cruise ships and container ships. The cruise ships are more frequent in summer and look like white apartment blocks floating past on their way to or from the Valletta Grand Harbour without stopping. Other working ships of all sizes frequently make anchor here, waiting for a storm to clear, waiting for a berth in the container port? I'm never sure.



Today is a public holiday here, so there are some sail boats out on the water, and early this morning before I was up I heard the sound of a small motor boat headed somewhere - Gozo? On sunny weekends in the summer and early autumn the blue water is full of white sails and luxury white motor launches.


This is the street in front of my flat. To the left, a couple of miles further down, is the original resort area of St Paul's Bay. It has been overtaken in popularity by the area of Bugibba/Qawra where I now live. Opposite my flat there's a semi-abandoned house (you can see the peeling yellow paint). This happens a great deal here. Many people own two properties, one inland, one by the sea. As they get older the sea-side property is used less often and gradually not at all. Then someone dies, inheritance battles ensue, and in the meantime properties quickly decay. Saddest is seeing old street front buildings lining the popular urban bays such as Gzira, Sliema, St Julians where the peeling paint, rotting window frames, and weed-sprouting walls of abandoned buildings lend a seedy air to otherwise prosperous resorts. In the meantime over 50,000 unsold newly built units in bleak modern blocks of flats sit empty.


This photo was taken with the zoom, so what you see here I'm not able to see with my own eyes. What you see in the mid-foreground is St Paul's Island, with a statue of St Paul, where the disciple Paul landed, shipwrecked, while being taken to Rome. Thanks to him Malta became an early outpost of Christianity and today there are (apparently) more churches than days of the year for a population of less than half a million people.

In the distance what you're looking at is the island of Gozo (known to Maltese as Ghawdex (aow-desh), and the enormous (and hazy in this photo) church to the right is the rotunda of the parish church of St John the Baptist in the village of Xewkija. The dome is higher than St Paul's Cathedral in London and the nave can seat 4000 people (around three times the village's population).

Back to the foreground and you may have noticed the odd-looking items in the water. These are fish farming ponds, full of tuna being fattened up for eventual sale in Japan. Raw tuna is very popular for sashimi in Japan (and Hawaii!) at this time of year.

That's my view today. I hope the weather stays good for the visitors I'm expecting!

Christmas Gift Challenge

Are you looking for Christmas gifts for people in your life who already have everything they need? A really great idea that has been catching on more and more in recent years is to give a gift that gives twice or even several times!

Giving a gift through one of the programs that provides a goat or a cow or school fees or even the gift of sight can change the life of a young person in more ways than one. How does it work? You go to the web site of the charity you would like to support; choose the gift; your relative or friend will receive a card with a message from you with details of the gift; a child who really needs help will receive the gift.

These days it can be difficult to decide which organizations to support, and which ones are reliable. I've put together a list, with links, to ten organizations which I either have direct experience of, or I know enough about them to feel confident in recommending them based on over ten years experience working in international development.

I've published this list with additional information over on HubPages as that way I hope it will get more exposure. I hope you'll take a minute to 'migrate' over to:

http://hubpages.com/hub/Top-10-Christmas-Gifts-that-Give-Twice

Have fun shopping!

ME Blogs

Blogging is a great outlet for people with ME, giving those with a gift for writing the chance to express their feelings and explain the illness to friends. Younger people make up most of the bloggers and there are a small number that I follow regularly. Whenever I'm feeling low, frustrated and resentful about having this illness I do my best to feel grateful that I have it now, at over 50, and am much better situated to cope with it. I feel tremendous sympathy for young people with ME. This is a particularly devastating illness for the young - and children as young as 3 have been known to get it.

One of the blogs I follow is called "Dashed Hopes and Measured Steps" written by a young man living in California. I'm quoting from him now, because I found a recent post of his particularly moving and also informative. His blog address is here:
http://pathogensoup.blogspot.com/

This is what he writes:

Every lesson I've ever learned from this illness has boiled down to what it means to be human, but I've always looked at this illness as part of the journey to who I want to be. I want to be successful and I'm starting to realize I may never be able to accept my place in society as it stands now. In fact, every year gets harder to accept, because I lack the ability to be fully in the present. I need to tell myself several times an hour to stop juxtaposing the past with present because they become more heartbreakingly unfamiliar with each other every year.
...........

Our illness is so debilitating yet there's no single way of describing it to entrench the severity within anyone's mind. My own mother had no idea how debilitating this was until last year, when she traveled with me to Germany and saw how I limited my walking to 20 minutes a day. If I don't sleep 9 hours, I feel like death tomorrow. If the room I sleep in isn't virtually mold and chemical free, I can't sleep. If I feel abnormally great today, I guarantee I will feel equally sick tomorrow--in math, we called this "inversely proportionate." If you Rufie me and stuff a pastry down my throat, I feel like death. If you don't let me sit down after 10 minutes, my heart feels like it's trying to stab itself. Any stressful situation send my sympathetic nervous system into overdrive and takes hours to calm back down. Are these actual symptoms of this disease not bad enough on their own? Why the duplicitous outward appearance of health to cause suspicion and misunderstanding from others that care about us?

Hey Big Guy, what were you smoking when you drew up our illness? "Say Angels, wouldn't it be a great social experiment to compare the psychological damage from, say, HIV and cancer to that of feeling just as ill but having no one understand WTF they're talking about?" "By Jeezes, yes it would!!"

Going Commercial

Today, 3 December, is the International Day of Persons with Disabilities (designated by the UN). In the past, on rare occasions when I tried to imagine what it would be like to be disabled, I would imagine myself in a wheelchair or maybe blind, and wondering how I would cope. I wondered if I would be brave and work hard to overcome all obstacles like some amazing disabled athletes or scholars manage to do. What I never - ever - imagined was invisible disability; the type of disability that others cannot see and thus leads them to think that maybe you're 'putting it on' without stopping to consider what you might lose - rather than gain - by such an action. I have lost my job, my income, my social life, my freedom of movement, the ability to enjoy a long walk, and even the ability to enjoy a chat with friends. I have been refused insurance payments that were rightfully mine; where I live now I am not eligible for welfare payments of any kind, and the cost of living is so high where I might be given welfare that moving would be pointless. I am struggling to find a way to make a living with the one or two hours a day when my brain might be said to function. Hence my decision to give in and have advertising on my blog. I don't expect more than a few pennies a week - but it's a start. I don't like some of the advertising, but I'm not sure how much choice I have over that. I apologize in advance to anyone who is offended by any of the adverts.