Wednesday, 25 November 2009

Florence and Precious Mhango

Please read this:


and send an e-mail to Phil Woolas. We know he can be swayed - Joanna Lumley helped him see sense about the Gurkhas.

You can follow the campaign on Facebook

Tuesday, 24 November 2009

Swine Flu Jag

I got a letter last week inviting me to attend my GP practice for a swine flu immunization. I have been receiving seasonal flu jags for a few years now because of my diabetes, and the swine flu inoculation offer followed on from that as I am in a risk category.

It was all an interesting experience. I found myself in a packed waiting room, and, as you do, began to eavesdrop a little. I was surprised at the general level of scepticism and fear in the room. People have become very suspicious, if not of science and medicine, certainly of the motives of the politicians and civil servants who set policy. Despite that 300 or so had turned up. I'm a bit more positive. I really don't want the flu, so I went for the jab with a glad heart.

I have to say I've felt pretty ill ever since - But I imagine that the strength of my reaction to the jag is indicative of my need for immunization. It's set off a lot of symptoms that could be either flu-like of ME. I'm tired, achy, can't concentrate,blah, blah, blah.

I'm glad I've had it though. It's still better than the real deal swine flu.

My advice for ME sufferers - get the jab, but clear your diary for 4 or 5 days afterwards.

Sunday, 22 November 2009


One of the more irritating by-blows of an illness is a surfeit of acronyms. My ME or CFS is now thought to be caused by the XMRV retro-virus. I'm quite ill, and I can't work - but apparently I'm not ill enough that the UK Government considers me eligible for Employment Support Allowance. The only treatment I have been offered was a brush with Cognitive Behavioural Therapy, not a treatment that is well suited to a retro-viral condition. Whilst it is the UK Government that pay benefit in Scotland, Health is a devolved matter, so it would appear that decisions about research and treatment will be made in Edinburgh.

I'm going to start firing off a few emails to relevant politicians, both in Westminster and Holyrood. A Westminster election is imminent, and a Scottish election is due about a year later, so I hope that the fact that my vote is up for grabs might concentrate minds. I shall post extracts of the replies here, especially those that seem particularly supportive and practical and those that are dismissive, contemptuous or ill-informed.

Friday, 20 November 2009

Pride and Sorrow

On her thought-provoking blog, Subrosa has put up this video.

Please take a moment to watch it.

Tuesday, 17 November 2009

Mickel Therapy?

I was a little concerned to see a comment added to my last post that appears to be an advertisement for a rather expensive course of psychological treatment for ME. At a time when the evidence for ME having a physical cause - in the form of a virus - is stronger than ever, I find myself very unconvinced by a suggestion of a psychological 'cure'.

In my previous incarnation as a Social Worker, I had plentiful dealings with Cognitive Behavioural therapies, and I know that they have a great deal to offer in appropriate cases. I was offered CBT myself through the ME clinic here in Fife, and benefited from it. The benefit, however, was not that it cured my ME, rather that it helped me to learn to live with it, negotiate with it, manage it, so that I could still achieve goals (albeit limited ones) and avoid despair. What it didn't do was 'cure' my ME, nor did I ever expect it to; psychology isn't about curing chronic physical illness.

Even if I had been tempted to try 'Mickel Therapy', the fact that it was presented to me in a spam post to my blog would have set me against the idea. It's been pushed at me in the same way as those Nigerian 'get rich quick' emails that invite you to give lots of money to someone you've never heard of. Well, I'd never heard of Mickel before today, and just like the Nigerian spammers, he's getting none of my limited funds.

I'd really appreciate comments on this. I am actually quite angry about what I see as an attempt to deceive me into parting with money that I don't really have in the vain hope of being cured of a chronic physical condition by some form of psychotherapy.

Saturday, 14 November 2009

Keep Going

You keep going. That is the bodhisattva's way. As long as it benefits even one being you have to, without any sense of discouragement, go on.
~ His Holiness the 16th Gyalwa Karmapa

I pinched this quote from lotusinthemud

It seems a pretty good motto to me.

A bodhisattva is one who compassionately puts helping others to be enlightened ahead of their own enlightenment.

Dazed and Confused

Well, after the great excursion to Edinburgh on Thursday, yesterday was the total wipe-out I'd anticipated. Every part of me ached, the brain fog was a real pea-souper, energy levels were flat and low. And guess what - today's the same.

However, at least I know I can get through a full day if I'm prepared to pay back with interest later.

Friday, 13 November 2009

ME Developments

Here's a link to a great blog post that neatly summarizes the recent discovery of a retrovirus that seems a highly likely cause of ME.

I devoutly hope that this advance eliminates all the lingering and destructive prejudice that attaches to ME - yes, unbelievers, it is a real illness! I also hope it leads to a cure, and that sooner rather than later.

Here is a link to the website of the The Whittemore Peterson Institute for Neuro Immune Disease

It seems I'm probably affected by Xenotropic murine leukemia virus-related virus, otherwise called XAND.

Here's the website of XAND and, which looks like it will be a useful source of information.

A Day in Auld Reekie

I've been surveying the wreckage of my working life recently, after 18 months of not being fit for work, and decided to see what I could do about it.

The idea of a new career as a proof-reader/copy editor had been forming in my mind for a while, and I signed myself up for a day of introductory training provided by Publishing Scotland, held in Edinburgh. Yesterday was the day; I was rather nervous about how I would cope, and spent two days resting up beforehand.

7.50 saw me at Cupar station, and the 7.55 Cross Country train duly turned up on time. However, everything ground to a halt outside Inverkeithing, and the train was 25 minutes late into Edinburgh Haymarket.

I emerged from the station into the unaccustomed hustle and bustle of a city rush hour. There were plenty of signs of the tram works everywhere: Heras fencing, excavators, chaps busily leaning on shovels, and a general air of chaos.

I found my way to the venue - just a 5 minute walk from Haymarket. Publishing Scotland have rooms in the Fountainbridge Library, a handsome Art Deco building on Dundee Street. Despite the railway's best efforts, I was on time, and I was soon plunged into the mysterious world of proofreading, with its strange squiggly marks and much talk of 'n-spaces' and 'm-spaces'.

The course was well presented and very interesting in a geeky pedantic sort of way, so as a pedantic geek (or possibly a geeky pedant) I was perfectly happy, and I coped well with the morning session. In all training, the period after lunch, 'the graveyard shift', is when everybody nods off a bit and can't concentrate, but I survived that well. However, the afternoon coffee break was the start of a bit of a slide for me, and everything started to go rather soft focus and vague as the ME 'brain fog' put in its appearance. I'll be needing to reread the handouts for that session with some care. Luckily for me, the course tutor was a fellow ME sufferer, so she understood my predicament.

We finished up at about 5, and I plodded back to Haymarket rather wearily. I'd taken the precaution of booking a First Class seat home - given the rush hour plus the fact that I knew I'd be shattered. It was a good deal - only two quid more than standard, and I got a free cup of coffee and a muffin, so I was well pleased. Somehow, I managed not to sleep through my stop, and I was retrieved from the station by Mrs Lucas.

There followed a bite for tea and a bath, and I retired to bed at 7.45! I'm still waking up now really, and I have few expectations for today. I ache from head to foot, and my brain won't work properly.

But - it was a good day in the Athens of the North, and I think I've found a way forward. Here's a plug for The Society for Editors and Proofreaders (SfEP).

Wednesday, 14 October 2009

A Great Leap Forward

All illness is horrible. Acute conditions are bad enough, but with a bit of luck you get better and life goes on. I've recovered from bowel cancer. It was quite advanced when discovered and I was very ill for a while, but I don't rate it as one of the greatest traumas of my life. When you have cancer, at least nobody tries to tell you that you are imagining it.

Chronic conditions are worse. Even if you do everything right, all you can hope to do is to minimise the effects. There is no prospect of recovery. I have three chronic conditions, depression, diabetes, and ME.

The depression was the first to arrive. It's not fun to live with. You wonder if you are imagining it, or whether you have become hysterical and pathetic. Everything in life is shades of grey; fun is a memory; dread is a constant companion.

Very shortly afterwards, I was diagnosed with Type 2 diabetes. It seems that diabetes and depression often co-occur. This knowledge made the depression seem much less of a shadowy threat, and my attitude towards it improved a lot. These days, I manage both the depression and the diabetes reasonably well, and I don't waste much time worrying about them.

That leaves the ME. I hate it with a passion. It affects everything I do every day. It makes me feel idle, stupid, ill and incapable. It bothers me far more than any of the conditions I have described, even if you add them all together.

BUT - the bloody thing is invisible. I can't really describe it to non-sufferers. 'I'm tired a lot, and I ache a lot' begins to describe it, but it goes so much further than that.

It's cost me my job, and in my dealings with the benefits system I'm left in little doubt that the system considers me to be a cheat and a liar.

After a while, self-doubt becomes a real issue. You begin to wonder if you are subject to delusions, or you have turned into an unscrupled scrounger.

And then, out of the blue, comes a ray of hope. Here's a link to a post from ChronicallyME that captures my response to this news.

Suddenly, it seems my illness is a serious, grown-up illness caused by a retrovirus. The doubters have lost. The pseudo-psychiatrists are routed. I'm not dreaming this, I'm not a self-deluding layabout, I'm actually really and properly bloody ill!

Tuesday, 22 September 2009

Henhouse horror

I keep a few bantam hens in a run at the end of the garden. They lay beautiful little eggs that are so much nicer than shop ones, and they are endearing creatures. They are very much a sociable species, and their interactions and behaviour can be a hoot. Bantam keeping is a good ME hobby, generally requiring no great commitment in time or effort.

But, this last weekend I noticed that the ladies had little visitors in the coop - the dreaded red mite. These tiny bloodsuckers breed very quickly, and affected poultry can weaken and perish in very short order. Much frantic cleaning followed, and an amount of creosote was sloshed onto the house. The creosote had been sitting in the back of my shed for years. Nowadays, creosote cannot be legally sold to householders as it is considered to be carcinogenic. However, whilst householders cannot buy creosote in 5 litre batches, it remains legal to sell the stuff to professional users in quantities greater than 20 litres. Confused? I know that I am.

Creosote kills red mite, so my problem is over, and the legalities really don't bother me.


Sorry for the absence, but life on my side of the screen has been rather hectic of late. Foiled house moves, health issues and life in general have all conspired to keep me otherwise occupied.

In any event, I hope I've hit on an idea (hat tip to my sister here) that might allow me to generate something of an income whilst leaving me able to cope with the ME. I'm planning to train as a proofreader, through a distance learning course offered by Dumfries College, and a day-long course in Edinburgh; I hope this will offer some networking possibilities.

I'm really quite enthusiastic about this idea; I can work from home at times I set myself. My previous job contained a degree of the work, and I'm a pernickety old pedant about language.

Monday, 24 August 2009

I don't like cricket - I love it!

What an amazing four days of cricket at the Oval, ending in an England win that was very hard to foresee after the Headingley debacle. England played with real fire - it was a joy to behold. Please let it not be another false dawn!

On the sporting front, big respect to Jess Ennis as well for her heptathlon win in Berlin. It's always good to see fellow Yorkshire folk getting on, and I love the fact that she speaks exactly like the Sheffield branch of my family - it's not an accent I hear too often in Fife!

Thursday, 20 August 2009

Kenny MacAskill's Dilemna

I try not to stray into politics, but the cant and hypocrisy flying around today drove me to this.

Any decision the Scottish Government's Justice Minister reached in the case of the Lockerbie bomber was going to be criticised from one direction or another.

Watching Megrahi board his plane stuck in the craw - but the decision to let him do so was was right and brave. Megrahi showed no compassion - the destruction of all those lives was an act of callous cowardice; we need waste no time expecting compassion from mass murderers. The vast majority of the people of Scotland, however, are good people, and Mr MacAskill represented that characteristic in reaching his decision - to do the right thing, even if it is likely to prove unpopular. Doing the right thing isn't always easy.

Ultimately, we will not beat the killers, terrorists and the callous by behaving like them - we must behave better than them and show an example. Mr MacAskill has done this today.

Well done, Mr MacAskill - I hope you are able to end this difficult day relaxed and happy, you deserve to. Have a good dinner, a nice whisky and a good night's sleep.

Mr Megrahi does not deserve his freedom, and I wish him no joy in it, although I hope it is some comfort to his family. Meanwhile, he had better prepare to meet his Maker. I trust he does not have long to wait.

Tuesday, 18 August 2009

Dundee's new V & A

Subrosa has posted today about the plans to build a branch of the V & A near to the Discovery in Dundee.

Dundee is a town with a very unfair reputation in some circles. In fact, it has one of Britain's finest theatre companies at the Rep, the McManus Gallery is well worth visiting, and there's the DCA. The view from the Law is fantastic, and Camperdown Park is a joy. It is home to musicians from The View to Michael Marra, let alone the friends of this blog's son - The Hazey Janes. Dundee has a fine collection of unspoilt pubs, and I recommend The Phoenix, The Speedwell (Mennie's), and The Fishermans Tavern as three of the finest pubs in Britain.

Dundee is great - go and see.

Opera 10 - some geekery

My hit counter tells me that most people accessing this site do so using the Internet Explorer, Firefox or Safari browsers. All have their strengths and weaknesses. IE is famously prone to malign interference, Firefox gets very slow if you load it up with the features that are its selling point, Safari I only know as the nuisance download I have to refuse every time I update iTunes, and it certainly used to have a name for insecurity.

The cool kids use the Norwegian contender - Opera - it's fast, light on computer resources and free. Lots of the newer features on other browsers first saw the light of day in Opera.

Here's a link to the Opera 10 beta


Here's a link to the current stable release version

Give it a try - there are versions for most operating systems.

Friday, 14 August 2009

A new follower!

Hi Jamie!

Les Paul

You can read the history of the man here:

All I can say is that the world of music has , albeit at a ripe old age, lost one of its guiding lights.

This is the man who gave us the Gibson guitar that bears his name, the glorious-looking, creamy toned or snarling brute of an instrument - the Les Paul. (The Holy Grail for collectors is the 1959 Les Paul Standard Flametop - which, if you could find one, would cost you $250,000- $300,000 in the US)

Here's some creamy toned Les Paul sound:

Here's some snarling brute Les Paul, courtesy of Mr Page:

And here is Mr Paul himself, playing one he made earlier, being joined by Chet Atkins part way through:

Goodbye and thank you, Les Paul.

Tuesday, 11 August 2009

Another song about a wedding

Emmylou, with Albert Lee on guitar - enjoy.

It ain't me, Babe

Some more Bob for you, doubting his ability to be someone's rock, like we all do.


In these northern climes, August carries strong hints of autumn. The days start to grow noticeably shorter, the swifts leave for Africa (they left Ceres last week), the crops ripen and harvest begins.

Frosts, the tangy smells of willow at leaf-fall and of wood smoke, and the evocative sounds of skeins of geese will soon be with us. The early part of autumn, up until the clocks go back in late October, is one of my favourite times of year. We often used to take Jemima D out for the October school half-holiday, enjoying the peace of the waterways after the summer heat and bustle. In early October, you could be alone on the canal, half-hidden in ghostly mists. The boat's wood burning stove kept us warm in the evenings, and all was well with the world.

John Keats - To Autumn

Season of mists and mellow fruitfulness,
Close bosom-friend of the maturing sun;
Conspiring with him how to load and bless
With fruit the vines that round the thatch-eves run;
To bend with apples the moss'd cottage-trees,
And fill all fruit with ripeness to the core;
To swell the gourd, and plump the hazel shells
With a sweet kernel; to set budding more,
And still more, later flowers for the bees,
Until they think warm days will never cease,
For Summer has o'er-brimm'd their clammy cells.

Who hath not seen thee oft amid thy store?
Sometimes whoever seeks abroad may find
Thee sitting careless on a granary floor,
Thy hair soft-lifted by the winnowing wind;
Or on a half-reap'd furrow sound asleep,
Drows'd with the fume of poppies, while thy hook
Spares the next swath and all its twined flowers:
And sometimes like a gleaner thou dost keep
Steady thy laden head across a brook;
Or by a cyder-press, with patient look,
Thou watchest the last oozings hours by hours.

Where are the songs of Spring? Ay, where are they?
Think not of them, thou hast thy music too, -
While barred clouds bloom the soft-dying day,
And touch the stubble plains with rosy hue;
Then in a wailful choir the small gnats mourn
Among the river sallows, borne aloft
Or sinking as the light wind lives or dies;
And full-grown lambs loud bleat from hilly bourn;
Hedge-crickets sing; and now with treble soft
The red-breast whistles from a garden-croft;
And gathering swallows twitter in the skies.

Sunday, 9 August 2009

A wee joke for youse

A wee wummin goes intae the butchers, who is standing with his back against a small electric heater, she looks at the display case of meats and says " is that yer ayrshire bacon?" the butcher reply's "Naw! just heatin ma haunds!!!

Nothing continues to happen

I'm discovering that it is a hard call to write a riveting blog about M E. The brutal truth is that for most of the the time, not much happens. I've been in a foggy dazed place ever since returning from Edinburgh on Tuesday. I had a bit of a false dawn on Wednesday, overdid things, and have been paying for it ever since.

Having a chronic condition can be very boring. It's not a dramatic, flashing blue light telegenic situation. It couldn't be further away from "ER". Life just grinds on.

Friday, 7 August 2009

Edinburghers take note

I just found a survey of Nottingham tram users, who seem to be a very happy bunch.

"Tram Passengers Now Even More Satisfied

A survey carried out in the autumn of last year has found that passengers continue to be extremely satisfied with tram travel in Nottingham. There has also been an increase in the number of people who support plans to introduce new tram routes.

For the fifth year running a comprehensive survey was carried out among NET tram passengers to gauge customer satisfaction, awareness and usage of the tram system in Nottingham.

Around 1400 people responded to the independent survey commissioned by Nottingham Tram Consortium, through on-tram questionnaires between 7am to 7pm over a period of a week, and telephone surveys with the general public along the tram route.

The results reveal an overall satisfaction with the tram service of 92%. Satisfaction levels with the experience on-board the trams and at the tramstops both increased compared to previous years as did satisfaction with the NET website."

So, look forward with confidence, Auld Reekie, delirious happiness is only a couple of years away.


I though I'd spend a day listening to the cricket. As a Yorkshireman, I consider Headingley to be a spiritual home, and memories of Willis and Botham putting the Australians to the sword years ago still warm the memory.

However, the rosy glow didn't last long. England's batting hardly lasted for as long as it takes to say "England Batting Collapse". Then it got even worse. The ineptitude of England's batting paled in comparison to the utter cluelessness of the bowling. The slender England score was overtaken for the loss of only one Aussie wicket as the bowlers persistently bowled short and seemed unable to learn from their mistakes as the ball flew to the boundary in all directions.

Ponting's just got himself out , but it's all too late, I fear.

Thursday, 6 August 2009

Iain Anderson - Radio Scotland

I can be seriously disgruntled with the BBC. I am especially annoyed when they feel the need to do things like send thousands of well-paid employees on freebies to Glastonbury whilst unwaged citizens like myself are compelled to pay their exorbitant licence fee under the threat of criminal prosecution. Similarly, it seemed that they sent their entire newsroom payroll to Washington for the US Presidential inauguration, for no discernible reason.

However, they do manage to get a lot right, and Radio Scotland, except for its moronic over-devotion to football at weekends, is a good example.

Iain Anderson's late night music programme is always a joy, and I commend it to you. And - in the 21st century, you can hear it at any time, anywhere in the world, through the miracle of the electric interweb thingy!

John Lee Hooker and Bonnie Raitt

The video is a bit unnecessary - but there's some great guitarwork here.

Wednesday, 5 August 2009

Bobby D on a forthcoming wedding

We haven't had any Dr Zimmerman for a while - The Amazing Wooldridge Brothers parodied this at Gill and Jamie's wedding reception - so providing me with an excuse:

Bamboo Bike

What a superb idea!

Tuesday, 4 August 2009

Some Burns for Gill and Jamie

I was thinking that I should post a poem about a marriage, and "John Anderson, My Jo" came straight to mind.

John Anderson, My Jo 1789

John Anderson, my jo, John,
When we were first acquent;
Your locks were like the raven,
Your bonie brow was brent;
But now your brow is beld, John,
Your locks are like the snaw;
But blessings on your frosty pow,
John Anderson, my jo.

John Anderson, my jo, John,
We clamb the hill thegither;
And mony a cantie day, John,
We've had wi' ane anither:
Now we maun totter down, John,
And hand in hand we'll go,
And sleep thegither at the foot,
John Anderson, my jo.

I knew the Bride when...

A bit of Rockabilly fun in honour of last night!

Mission Statement - Permaculture and me

Gosh, that sounds very portentious and organised. Now I've been at the blogging for almost a month, I thought I'd take stock of where it's all going.

So - the key purpose of the blog will be to chart my progress through my ME midlife crisis. It's a diary, it's a chance to let off steam, it's a chance to talk about music and and writing that appeals to me. However, it will also record my progress from being a hectic wage-slave, via illness and unemployment, through into a new way of living on, through, and with a small patch of land.

There's a fairly happy coincidence of circumstances here. In a Permaculture system, the land is left, insofar as practicable, to look after itself. For example, mulching is preferred to digging, and every opportunity is taken to lessen inputs, whether by eliminating spending on artificial fertilizers, or by counter-productive disturbance such as digging. As I am too poor to spend much, and too ill to dig much - we are in a good position to pursue Permaculture. I hope to attend courses, learn more, practice more, as time passes. Other skills, such as green woodwork and poultry husbandry wiull be part of the package. The objective is to live a calm, natural life and find some healing in doing so. There will be progress reports...

A sojourn in Auld Reekie

A good evening in Edinburgh. We attended the wedding reception, meeting up with a few people we hadn't seen for a while, including many of son Alastair's school and University peers. We had an excellent meal, and then were well entertained, firstly by the groom's father and uncle with a light-hearted set. (Example - Uncle Eric fiddles with PA controls "Does that sound better - or can you still hear us?"). That was followed by an excellent set provided by Andrew and Matthew of the Hazey Janes, who blew us all away with some great musicianship - including a great cover of the groom's (Jamie) own composition "Got You" - you can find the "Boss Star" original here

We returned to our lodgings in Morningside, and after a good night's sleep, bacon rolls and a blether, returned to the Kingdom of Fife this morning.

Edinburgh's in some state - the tram works have turned Princes Street into a linear building site. The locals are uniformly irate about the whole business. I wonder what feelings will be like in the longer term - cities like Dublin, Nottingham and Manchester were ambivalent at best about their tram lines at the outset - but they all seem to be a great success now.

Sunday, 2 August 2009

Chicken maintanance

Well, I just cleaned out my little chicken coop, currently occupied by half a dozen "teenage" chooks, all about 12 weeks old, and very full of themselves. It's the first useful thing I've achieved today - it's been a while since I felt as boisterous as my young birds do!

Bantam keeping is a great PWME activity - it never asks too much of you all at once, and the responsibility for the welfare of the little girls (and three teenage boys) is a good motivator on the "blah" days when I really don't feel up to move at all. The rewards are pretty instant also, it's always a pleasure to find eggs in the nest box.

This hasn't been a great week. Since my day at the Big Tent Festival last Saturday, I have been flat as a fluke - foggy, headachy, utterly without energy, either too hot or too cold, and constantly perspiring. We have a wedding reception to attend in Edinburgh tomorrow, I really wonder if I will be up to it, although it will be nice to see both our friends at the wedding, and also the friends who have offered to put us up for the night in Morningside.

Housing issues lumber on. We've been offered the lease on a great old house in the country - hurrah! But - the buyer-to-be of our house has just had the sale of her property fall through, so we remain in limbo. This is not good.

As ever - we shall just have to wait and see...

Thursday, 30 July 2009

Jim Reid of Dundee

This fine singer recently passed away. He left behind some great work, including his setting of "The Wild Geese", or "Norland Wind" as some know it. You'll find a recording of this here, along with the words, including a translation from the original Angus dialect. Enjoy.

Juxtaposition 2

On First Looking Into Chapman's Homer

Much have I travell'd in the realms of gold,
And many goodly states and kingdoms seen;
Round many western islands have I been
Which bards in fealty to Apollo hold.
Oft of one wide expanse had I been told
That deep-brow'd Homer ruled as his demesne;
Yet never did I breathe its pure serene
Till I heard Chapman speak out loud and bold.
Then felt I like some watcher of the skies
When a new planet swims into his ken;
Or like stout Cortez, when with eagle eyes
He star'd at the Pacific - and all his men
Look'd at each other with a wild surmise -
Silent, upon a peak in Darien.

-- John Keats

Juxtaposition 1

Wednesday, 29 July 2009

Some Wisdom

"Our ancestors viewed the earth as rich and bountiful, which it is. Many people in the past also saw nature as inexhaustibly sustainable, which we know is the case only if we care for it. It is not difficult to forgive destruction in the past that resulted from ignorance. Today, however, we have access to more information, and it is essential that we re-examine ethically what we have inherited, what we are responsible for, and what we will pass on to coming generations."

- Dalai Lama

Tuesday, 28 July 2009

KT Tunstall

Here's KT on "Later" with one of her own songs, a very cool-looking guitar (a Gretsch G6199 'Billy-Bo' Jupiter Thunderbird - what a mouthful!) and a striking pair of specs.

Time we had another poem

This might have some resonances for PWMEs.

When in Disgrace with Fortune and Men's Eyes (Sonnet XXIX)

When in disgrace with Fortune and men's eyes,
I all alone beweep my outcast state,
And trouble deaf heaven with my bootless cries
And look upon myself and curse my fate.
Wishing me like to one more rich in hope,
Featur'd like him, like him with friends possessed,
Desiring this man's art and that man's scope,
With what I most enjoy contented least,
Yet in these thoughts myself almost despising,
Haply I think on thee, and then my state,
(Like to the Lark at break of day arising)
From sullen earth sings hymns at Heaven's gate,
For thy sweet love remembered such wealth brings,
That then I scorn to change my state with Kings.

-- William Shakespeare

Gentle Pursuits for the PWME - No 5

Greenwood working is an interest that I've been gestating for awhile, and that I hope to put into action after our move. I was watching demonstrations of greenwood working at the Big Tent, and was again struck how much can be done with few tools and little expense given some time and ingenuity.

Here's a good place to learn a little about the craft, and here's a good looking source for the requisite kit.

More Music Fae Fife

And here is Fae Fife, with the rest of the Rezillos:

The Big Tent Festival

I was really keen to attend this festival again this year, ME notwithstanding, and deliberately laid low for a day or two to try to build up a reserve of stamina for it. We went on the Saturday, Alastair, Susanneke and I and arrived just after 10.30 on a lovely summer's day. The previous day's rain and the presence of some pretty large vehicles and plant on site had made a fair mess of the ground, and wood chippings were being liberally scattered to counter the clarty underfoot conditions. Fortunately, the weather stayed good, and the ground conditions improved as the day wore on.

My plan was to spend 30 minutes or so looking round, followed by 30 minutes rest as device to get through the day, and it worked fairly well. I managed to spend time talking to the people at the Scottish Basket-weaving Circle, the green woodworking display and the Permaculture Association. We attended an hour long Permaculture presentation which was very good, but which I actually found to be the most tiring activity of the day. It was a very participative workshop, and the sustained mental activity was a challenge to my foggy grey cells.

In the passing, I managed to hear some very good music from the stage, ate a buffalo burger, and had a smoothie mixed by a bicycle powered food processor. I collected lots of information, including how to grow edible fungi on brash wood, how to build with straw bales, and a whole load of other post peak oil useful information. I found out about a community owned cider press that is available to local groups. I met a good few friends, including an erstwhile colleague

The sun shone, and the Falkland Estate looked lovely as ever, it was a great day out.

WE came home at about 5.30. I dozed all evening. Sunday came and went - I never really woke up. Monday came - I actually got out of the house with Susannneke long enough to go to Cupar for a hair cut - I felt lousy all day though, and that has carried onto today - I'm still feeling weak and wobbly.

I'd do it again, but it is really a bit of a bugger when spending a peaceful day out locally from 10 am to 6 pm puts you out of action for at least three days afterwards.

Monday, 27 July 2009

Nobody sings Dylan like Dylan

But sometimes you hear a new take on a Dylan song and it shows you another side of it. The most famous cover ever must be Jimi Hendrix's astounding version of "All along the Watchtower", transforming a simple folk song into a thing of majesty; Jimi is out there on his own, but there are some other great ones as well. Thea Gilmore's take on "I dreamed I saw St Augustine" is well worth seeking out, and here is St Andrews' own KT Tunstall doing a lovely job on "Simple Twist of Fate"

Music from Fife - an occasional Series

Fife produced Jimmy Shand, the Rezillos, KT Tunstall The Proclaimers, Nazareth and Big Country. Add King Creosote and the Fence Collective and others I've still to remember, and it's a potent, eclectic mix. Here's a start

The Laughing Policeman

My son Douglas has just been accepted to train as a police officer!

Tour de France - Wow!

So, the boy wonder won his sixth stage of the TdF on the Champs Elysee, and Bradley Wiggins held on for fourth place in the GC.

Mark Cavendish's win in Paris was even more spectacular than the previous five, and was absolutely compelling to watch. We saw history being made - I can't wait for next year!

Friday, 24 July 2009

Kraftwerk - Tour De France



Another wonderful result for "Boy Racer" Cavendish in the Tour de France today, and an absolute epic at that. He's now the most successful British rider in the history of the Tour, ever, and he's only 24. Meanwhile, Bradley Wiggins continues to prove he could have a real chance of a podium finish. I've been loving the Tour de France this year.

Tuesday, 21 July 2009

Another tune for you

Written and sung by poor Sandy Denny, God rest her, and with the then teenage Richard Thompson's guitar weaving its way through and around her words, this is such a lovely thing:

Beautiful Cosmos

Glorious stuff from Ivor Cutler:

Reasons to be cheerful - Part Two

A wonderful poem about this part of the world and its people, written by Alastair Reid in St Andrews in 1971:


It was a day peculiar to this piece of the planet,
when larks rose on long thin strings of singing
and the air shifted with the shimmer of actual angels.
Greenness entered the body. The grasses
shivered with presences, and sunlight
stayed like a halo on hair and heather and hills.
Walking into town, I saw, in a radiant raincoat,
the woman from the fish-shop. 'What a day it is!'
cried I, like a sunstruck madman.
And what did she have to say for it?
Her brow grew bleak, her ancestors raged in their graves
as she spoke with their ancient misery:
'We'll pay for it, we'll pay for it, we'll pay for it!'

Reasons to be cheerful - Part Three

Reasons to be cheerful - Part One

One of the better decisions we ever made was to buy a share in Jemima D. Our trusty, rusty boat has provided us with some happy times, although my illness has kept us away from her for quite some time. Jemima is undergoing a bit of an epiphany at present, having a smart new roof and topsides, and a full internal refit in hand. I'm hoping I can stage a comparable resurrection at some point, and enjoy some pottering about at 3 miles an hour on the canals again.

Ups and Downs

Yesterday was a good day, i was out and about for a couple of hours yesterday afternoon. Today was payback time - one of those groggy foggy days when even the mildest exertion leaves you tired and struggling. The plans for our move are still stalled waiting for the house sale - it's becoming rather tedious now.

Saturday, 18 July 2009

The Boss and I

Well, I passed another ME milestone this week. Alastair, my eldest son and some friends were going to Glasgow to see Bruce Springsteen. There was a ticket available for me. But, I knew I couldn't cope with a trip through to Glasgow and four or more hours in a crowded concert hall, so I had to let the chance pass.

I was talking to a friend with ME later, who told me that a similar experience was the thing that suddenly made his situation crystal clear to him. The Boss incident did the same for me.

ME - don't it make you feel like you're a rider on a downbound train?

Downbound Train - Bruce Springsteen

Newton's Cradle

Friday, 17 July 2009

Two muted cheers for the DSS

A good week had elapsed since I had to have my appeal lodged with the DSS against their decision to stop paying my Employment Support Allowance, and I'd had no acknowledgement from them - so I phoned today.

They have recieved and processed the appeal, and as a result, on Monday I will receive £250 "back pay" for the period since the benefit was suspended on 11 June.

So far, so good, I guess.

An old favourite

He wishes for the cloths of heaven

Had I the heavens' embroidered cloths,
Enwrought with golden and silver light,
The blue and the dim and the dark cloths
Of night and light and the half-light,
I would spread the cloths under your feet:
But I, being poor, have only my dreams;
I have spread my dreams under your feet;
Tread softly, because you tread on my dreams.

-- William Butler Yeats

Thursday, 16 July 2009

Some classic Dylan (Bob, not Thomas!)

A Day in the Life

I'll be adding to this post as the day passes, I thought I'd log a day in the life of a PWME.

I woke at about six, feeling foggy, groggy and clumsy. Normally, at about 6.30, I go downstairs and make our breakfast, but I cried off today on the grounds that I felt I was highly likely to drop things, break them,and generally make a mess. So Susanneke did it instead! After she set off for work, I decided against a shower, as I thought I might fall, and got dressed. Flynn, my sagacious collie/greyhound red merle lurcher, takes this a cue for our morning walk of about 500 metres to the village shop, returning via the village green. However, proceedings were interrupted by a phone call from my son Douglas, who announced the happy news that, depending on the results of a medical, he has been accepted to train as a police officer with the Tayside force. Hurrah! I called Susanneke and my parents to let them know. It's amazing how a bit of good news gives you a lift!

So, belatedly we set off, Flynn bounding about as he does, me doing my impression of Lurch from the Addams Family. We got to the shop and bought 6 morning rolls, a Guardian and a Dundee Courier. I got home and felt the usual mini-crash happen. In twenty minutes I felt a little better, so I put the kettle on and went into the garden to see to the hens. I have six layers of different breeds, and six youngsters that I hatched under one of the layers when she was broody. Three of the youngsters are cockerels, and I'd like to keep them to breed from next year, if we can manage our move before they start crowing and make the neighbours complain! I should tell the estate agent to get my house sold or the poultry gets it, I suppose!

Now I'm sitting with a cup of coffee at the computer. I'm feeling a bit foggy still, and this seems to be a tinnitus day :( other wise, so far, so good. It's 09.52

11.23 - I had a sleepy hour. Tried to read the papers, but couldn't concentrate, ended up dozing on the sofa. I woke up hungry, so had a roll with salami, then came up to add to this post. The Dylan song popped into my head for no apparent reason, so I added it to the blog, and then updated here.

11.56 - It's a beautiful day - warm, with a light breeze to stop it being too warm. Feeling relatively perky, I took Flynn down the lane to a nearby open space. Bounded by the Ceres burn, there is a football (soccer) field, amongst trees and hedgerows. I foraged some greens for the hens out of the hedgerow - the meadowsweet is the "plat du jour", and I found some ripe Sweet Rocket seedheads which I collected, some for me, some for Alastair, my eldest son, who wants some for his garden in Dundee.

I'm probably going to go quiet for a while now - I can feel the onset of the jelly legs.

15.34 - I've just woken up and I'm feeling fairly yukky - dizzy, disorientated and foggy. From noon to 1400 I read the paper, and dozed on and off. At 1400 I gave up trying to stay awake and went to lie down on the sofa. I slept for over an hour, and then took 20 minutes or so to wake up enough for the dizziness to become manageable enough to stand up. I took a little walk into the garden, to find the that I had an egg to collect, then came up here to update.

1915 Dopey and slow since the last entry, I read emails, and was drowsy, headachy, and "tuned out". Susanneke home at six, we ate. I'm in front of the TV for the Tour de France highlights just now.

2030 Tour highlights over, I took the dog down the lane for five minutes to wake myself up - a partial success. A neighbour's son dropped in and asked me to witness a passport application - which I did. The coffee pot is on just now. After my coffee, it will be bath and bed for me at about 2200.

Reading back over this record, I think I've picked a pretty typical day. I wasn't so good first thing as I often am, and I sometimes am a bit brighter in the afternoon. On the other hand, I've had plenty of worse days. I'll revisit this in a few weeks and see if there are any conclusions to be drawn.

Wednesday, 15 July 2009

Ivor Cutler on the nature of reality

It's that man again

The Manx Missile has just won another stage of the Tour de France! With Mark Cavendish, Bradley Wiggins, David Millar and the glorious Nicole Cooke, British road cycling is looking really good at present - which sits nicely with the track cycling exploits of Sir Chris Hoy, Victoria Pendleton, Rebecca Romero and chums.

A poem to consider

Like many, I learnt this poem by Shelley by rote at school. It was only much later in life that the way it confronts our mortality became clear to me. Its message is almost a Buddhist one - the power and possessions and preoccupations of the material world are insubstantial and transient. We must live in the "Now" - there is nothing else, and attachment to things will only hurt us and cause us pain.


I met a traveller from an antique land
Who said: "Two vast and trunkless legs of stone
Stand in the desert. Near them on the sand,
Half sunk, a shattered visage lies, whose frown
And wrinkled lip and sneer of cold command
Tell that its sculptor well those passions read
Which yet survive, stamped on these lifeless things,
The hand that mocked them and the heart that fed.
And on the pedestal these words appear:
`My name is Ozymandias, King of Kings:
Look on my works, ye mighty, and despair!'
Nothing beside remains. Round the decay
Of that colossal wreck, boundless and bare,
The lone and level sands stretch far away".

The Manx Missile

A bit of yin to balance the yang of my moany last post!

It was great to see Mark Cavendish come through for another Tour de France stage victory yesterday. The tactics of his team are a thing of beauty - with the team leading him out in turn into a position where his sheer acceleration just blows everyone else off the road. Let's hope we see him in Paris in the green jersey - even if he is still claiming that he doesn't expect it!

The Story So Far

I've just "celebrated" the first anniversary of my ME. I'd had a couple of bouts of illness during early 2008, culminating in an illness that lasted for a week in June, during which I was running a high temperature, experiencing soaking night sweats, and feeling deathly. I was given antibiotics by my GP which seemed to clear things up, but slowly and surely the signs of the chronic problem began to show. I tried to return to work but simply couldn't get through a day. My GP was very efficient - he quickly had blood tests organised. All came back negative, so we were left with the differential diagnosis of ME. I've been blundering about in the fog ever since.

Until I was about 40, I hardly had ever set foot in a doctor's office, and the concept of being unwell had seldom occurred to me. However, when I was 41 I had a year during which I felt increasingly unwell before I was diagnosed with bowel cancer. I had surgery, and a subsequent scare with a pulmonary embolism, and recovered well. Perhaps I was a little more prone to "tummy bugs" than some, but I was perfectly able to cope with life at work and at home as a parent of 3 children.

The next glitch began about 3 years ago, when I began to feel fatigued, unable to cope, irritable and all the rest. Tests soon revealed that I had developed Type 2 Diabetes, along with a side order of depression (diabetes and depression frequently co-occur). I gradually improved and returned to work after a six month lay off. Metformin and Fluoxetine became part of my daily routine, and remain so. I'm fairly confident I'm managing the diabetes, and I'm so scared of a return to the depression that I work hard to prevent it (this blog is a part of the therapy, I guess). Within a few months of my return to work, however, the niggly illnesses had begun that culminated in the ME.

So now I sit at home. My job went on grounds of my incapacity in April, although there was no suggestion that I might be entitled to claim some or all of my pension, and I remain in correspondence about this matter. I have been introduced to the wonders of Jobcentre Plus, Pathways to Work and other Government initiatives. None of these bodies seems able to comprehend that I am unwell, but I live in hope of convincing them. The DSS are so unimpressed that they have suspended my Employment Support Allowance. However, I can't claim Jobseekers as I am not certified fit for work. I am appealing the decision about my benefits - and await an acknowledgement of that from the DSS. Meanwhile, the bank make polite but firm requests about my plans for the mortgage I can't pay. Adopting a state of Zen-like calm becomes increasingly difficult. I grimace when I think of all the times I might have said I was happy to live in a welfare state where every citizen could expect to have their needs met - but illusions should be shattered, I guess, so that the truth is revealed.

Tuesday, 14 July 2009

But you don't look sick...

I came across this today. Really useful!

Symptoms List

I thought I'd list all my symptoms here, so others can see, and also to provide a baseline for me to check back against later:

Headaches, blurry vision, dizziness, muffled hearing, balance problems, inability to remember words. poor memory,poor concentration, snuffles, tiredness, lack of stamina.
Muscle weakness, clumsiness, muscle twitching, aches in legs, poor body temperature control,, easily tired in company, by emotions, mild shocks like a slamming door - anything that provides an adrenaline rush.
Irritable bowel
Messed up sleep pattern
Slow to waken and/or react

A tragic homecoming

I'm watching the scenes from RAF Lyneham, as the eight coffins are taken from the aircraft. It is an unspeakably sad scene, and my heart goes out to the families, friends and comrades.

Gentle Pursuits for the PWME - No 4

Honey bees are having a very hard time at present, a fact that has some serious implications for those of us with rather fewer legs and no wings.

Here is the biobees site, which offers an alternative to the the chemical-dependent orthodoxy of beekeeping, using hives that can be made of cheap and easily-found materials such as scrap pallets. This is a project very high on my "things to do"list . A low cost, low input system, compatible with a Permaculture approach, and the limitations imposed by ME.

Fern Hill

Some more Dylan Thomas, simply a beautiful poem about childhood:


Now as I was young and easy under the apple boughs
About the lilting house and happy as the grass was green,
The night above the dingle starry,
Time let me hail and climb
Golden in the heydays of his eyes,
And honoured among wagons I was prince of the apple towns
And once below a time I lordly had the trees and leaves
Trail with daisies and barley
Down the rivers of the windfall light.

And as I was green and carefree, famous among the barns
About the happy yard and singing as the farm was home,
In the sun that is young once only,
Time let me play and be
Golden in the mercy of his means,
And green and golden I was huntsman and herdsman, the calves
Sang to my horn, the foxes on the hills barked clear and cold,
And the sabbath rang slowly
In the pebbles of the holy streams.

All the sun long it was running, it was lovely, the hay
Fields high as the house, the tunes from the chimneys, it was air
And playing, lovely and watery
And fire green as grass.
And nightly under the simple stars
As I rode to sleep the owls were bearing the farm away,
All the moon long I heard, blessed among stables, the nightjars
Flying with the ricks, and the horses
Flashing into the dark.

And then to awake, and the farm, like a wanderer white
With the dew, come back, the cock on his shoulder: it was all
Shining, it was Adam and maiden,
The sky gathered again
And the sun grew round that very day.
So it must have been after the birth of the simple light
In the first, spinning place, the spellbound horses walking warm
Out of the whinnying green stable
On to the fields of praise.

And honoured among foxes and pheasants by the gay house
Under the new made clouds and happy as the heart was long,
In the sun born over and over,
I ran my heedless ways,
My wishes raced through the house high hay
And nothing I cared, at my sky blue trades, that time allows
In all his tuneful turning so few and such morning songs
Before the children green and golden
Follow him out of grace.

Nothing I cared, in the lamb white days, that time would take me
Up to the swallow thronged loft by the shadow of my hand,
In the moon that is always rising,
Nor that riding to sleep
I should hear him fly with the high fields
And wake to the farm forever fled from the childless land.
Oh as I was young and easy in the mercy of his means,
Time held me green and dying
Though I sang in my chains like the sea.

YouTube if you want to

Hmm, it seems that some YouTube clips come in a wider format that doesn't fit the Blogger format too well - any advice from a practiced blogger would be welcome!

Update! I got into the HTML and fixed it myself.

Monday, 13 July 2009

Two for the price of one

Great musician and total silliness!

Do not go gentle into that good night

So here's a poem by Dylan Thomas about fighting back and squeezing every last drop out of life, no matter what:

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Gentle Pursuits for the PWME - No 3

When I had energy and money, I used to build electric guitars for my musical son. With a few short-cuts, courtesy of Warmoth, this isn't an insuperable task, and the results can be utterly stunning. I've built a Stratocaster copy, and a Telecaster. I've also modified an Epiphone Les Paul with completely new electronics, hugely improving the tone, and including some fancy switching so it can reproduce the sound of Peter Green's "out of phase" Les Paul of the original Fleetwood Mac glory days. The pickups for the Strat and the Les Paul came from the redoubtable Bill Lawrence, whereas the Tele has Wizard pickups. I'll know I'm feeling better when I sit down with Douglas, my son, to plan the next instrument.

Some inspiration for you

The fantastic Richard Thompson with a song that's great even by his high standards. How does one man get so much out of one guitar?

Another wee dose of silliness

21st Century Gilbert and Sullivan:

ME and the Buddha

We all find our own ways of coping. Buddhist thought has the happy quality of not really conflicting with any of the major religions as it does not posit its own deities. The Buddha was a mortal man, albeit one wiser than most, and his words can be taken as just plain good advice, not Holy Writ. In the better translations, his words have the additional benefit of being poetic and calming in themselves. There are no miraculous fixes, he warns us "You should do the work yourself, for buddhas only show the way". Dhammapada

"Overcome your uncertainties and free yourself from dwelling on sorrow. If you delight in existence, you will become a guide to those who need you, revealing the path to many." Sutta Nipada

Sunday, 12 July 2009

In which I am annoyed by "The Observer"

The Observer, in the tradition of UK Sunday newspapers , has an irritating lifestyle colour magazine wholly aimed at millionaires living within the M25. In today's edition, William Leith describes as "Chronic Fatigue" the state he ended up in after a decade of cocaine misuse, heavy drinking,and high stress levels. He cured himself by cutting out the abuses, getting more exercise, and sleeping regularly.

It seems to me that what he calls "Chronic Fatigue" is nothing like the ME/CFS that I experience. We are back to the nomenclature problem again. If Chronic Fatigue is what happens to silly metropolitans who don't look after themselves, then what I have isn't Chronic Fatigue. Yet "Chronic Fatigue Syndrome" is what it says on my sick notes. No wonder I have trouble with the DSS, if my illness is being lumped together with the results of the self-indulgence of Mr Leith and his chums.

Saturday, 11 July 2009

Simple pleasure found

There's a heap of five bantams sunbathing on our back door mat, looking deeply contented with life. On their sides, with a wing extended, eyes closed, soaking up the sun. The Good Life!

The Fife Diet

This site is well worth a look. The idea behind the Fife Diet is starting to really catch on; it's part of the thinking behind my own future plans.

Simple pleasures lost

I'm feeling a little mournful today - I'm flat on the sofa whilst Mrs Lucas is out doing some shopping - I felt too lousy to go with her. Shopping has never been my idea of a great time, but in a small community like ours, it usually involves meeting a few folk you know and haven't seen for a while. This gives you the chance to catch up the news, and to strengthen the sense of belonging that can be an early casualty of long term illness.

The thing I'm missing most is riding my bike. I bought myself an Edinburgh Bike Co-op Country tourer a few years ago, and used it To commute to work, along with rides around Fife. Over the years, I modified it a lot with uprated gearing - including altering the gear ratios to suit me better, uprated brakes, tyres, saddle, and a new adjustable handlebar stem to get a better riding position. It's now a lovely machine that fits me like a glove, but I can't ride it. I'm going to take off the clip-in pedals and replace them with plain platforms, and try it out, though (I daren't try riding clipped in just now - too scary!). My regular 20 mile commute from Kirkcaldy on it seems a long time ago now - I'd love to get back to cycling.

Friday, 10 July 2009

Tour de Force des Britanniques

Bradley's fourth overall, and Cav's still in the maillot vert. Meanwhile, good ol' boy Lance Armstrong destroyed a few more Young Pretenders today. Vive la Tour!

A little bit of politics

It's good to see the Scottish Government giving some thought to CFS/ME.

It seems that this is yet another area in which Holyrood is ahead of Westminster - think Trident, nuclear power, illegal foreign wars, etc. - it's a shame a similar sense of enlightenment has yet to occur to the London politicians who dictate the policies of the DSS.

If the leaders of the UK parties are as committed to preserving the Union as they claim, they really are going to have to raise their game. Currently, it seems to me that a Scottish Government will take far more account of my hardships than a United Kingdom one. But - I'm a floating voter and the General Election is a year away. Show me your stuff, ladies and gentlemen. Convince me.

Shameless Plug

Some family friends have got themselves a gig at Dundee Rep Theatre:

If you've never heard the Hazeys, think of Big Star or Teenage Fanclub for an idea of their sound - guitars and harmonies. It's got to be a good night out for £8!

Gentle pursuits for the PWME - No 2

Grow some food! Here's a video of how to build a keyhole garden: (Those of us who are feeling really shoogly could get Persons without ME to build it, and just do the aftercare)

Light Relief

I have a concern that this blog could become worthy and dull. Let us take steps to avoid that.

Another Poem

Nasim Jafry mentioned the poetry of Edna St. Vincent Millay in "the State of Me", and this poem in particular, although she did not quote it. I did not know of either the poet or the poem, but through the miracle of Google I found it. It's a lovely poem about a lost love, and I pass it on hoping that you will never need it. Apropos of nothing in particular, my grandmother was an Edna - I hope she would never have needed this verse also.

Well, I have lost you; and I lost you fairly;
In my own way, and with my full consent.
Say what you will, kings in a tumbrel rarely
Went to their deaths more proud than this one went.
Some nights of apprehension and hot weeping
I will confess; but that's permitted me;
Day dried my eyes; I was not one for keeping
Rubbed in a cage a wing that would be free.
If I had loved you less or played you slyly
I might have held you for a summer more,
But at the cost of words I value highly,
And no such summer as the one before.
Should I outlive this anguish—and men do—
I shall have only good to say of you.

OK, somebody help me out here...

ME, CFS, CFS/ME, Royal Free Disease, the names for my Major Encumbrance are as plentiful as the stars in the sky, and bewilder me. I am dimly aware of the the politics behind the myriad names, and a look at the Hummingbird site will lead you to discussions about this.

For what it is worth, I don't feel that CFS - Chronic Fatigue Syndrome - as a name at all accurately describes my symptoms. We all know what fatigue feels like - if we have brought up children, worked in a demanding job, travelled across time zones, driven for too long, been ill, stressed or anxious, we have been fatigued. The cure is sleep, calm and rest, and recovery naturally follows once these needs are met.

But my "CFS" is not cured by this approach. I can sleep for ten to fourteen hours out of the day, and waken feeling worse than I did before. It can take me 30 minutes or so to become properly concious after such a sleep. "Fatigue" doesn't explain the aches and pains in my legs, my poor concentration, the brain fog, blurred vision, muffled hearing, headaches, irritable bowel, and why I feel either too hot or too cold at inappropriate times. Not all of these are constant, but I know that they are not necessarily improved by rest. Cognitive Behavioural Therapy doesn't help, and graded exercise doesn't either.

I'd be really grateful if someone could tell me exactly what the matter with me is, in simple terms.

Thursday, 9 July 2009

My first follower!

(Waves) Hi there, Sue!

The Lake Isle of Innisfree

Mr William Butler Yeats in cracking form; the poem that
is shaping my hopes for the future (with one notable
- I hope not to be living alone!)

I will arise and go now, and go to Innisfree,
And a small cabin build there, of clay and wattles made:
Nine bean-rows will I have there, a hive for the honey-bee;
And live alone in the bee-loud glade.

And I shall have some peace there, for peace comes dropping slow,
Dropping from the veils of the morning to where the cricket sings;
There midnight's all a glimmer, and noon a purple glow,
And evening full of the linnet's wings.

I will arise and go now, for always night and day
I hear lake water lapping with low sounds by the shore;
While I stand on the roadway, or on the pavements grey,
I hear it in the deep heart's core.

Gentle pursuits for the PWME - No 1

Google Delia Smith's lemon curd recipe

OK - Here it is!

Use a bain marie, not the saucepan she suggests - you'll thank me for that tip come the washing up. If you keep bantams (and you should!) you'll need six bantam eggs instead of the four large eggs the sainted Delia proposes.

This is a quick and easy recipe - but it will put you off the shop bought stuff forever - it produces wonderful results.


Tour de Force

Time to be a little less grumpy than I was in my last post. Isn't the the Tour de France great this year? Our boy Mark Cavendish in the green jersey, Bradley Wiggins and David Millar both well placed, and an old guy from Texas looking as if he might well rise from the grave to pee on the French nation's collective chips. (If you are going to mix metaphors, do it boldly, say I)

Diabolical Shower of S***s

I'm suffering from Furious with the DSS Syndrome. They summoned me to a consultation with a doctor in a Health Centre at the top of the Hilltown, the steepest hill in Dundee. My chances of getting there without the help of my lifeline lady would have been zero.

The format was very 1984. Asked about my ability to drive, I replied that my brain fog, blurred vision, poor concentration etc, meant that I was choosing not to drive. When I got a copy of the interview minutes the following week, , this was recorded as "Mr Lucas prefers to let others drive for him". Not quite the same thing. Inevitably, in view of the distorted nature of the proceedings, the DSS were able to reach the decision they wished to, and cancelled my benefit entitlement. I'm appealing. I'm also furious, and I will be involving my MP, MSP, MEP, Councillor, lawyers, and whoever it takes to overturn the DSS's ridiculous decision.

Perhaps I need to enrol the assistance of a professional layabout, the ones you know have never worked, that you see walking from the pub to pie shop via the bookies with a fag burning. They seem to do well out of the DSS, it's just the mugs who work for 30 odd years and then need to claim who are ignored.

Spread the word about ME

Introduction and some recommendations

A year of M. E. has left me without a job, and with some choices to make. I don't think I'd want to return to the stress, risk and hurly-burly of Social Work even if I was well enough to do so, which I'm not. So I'm looking for a new direction, if not an absolute target destination, remembering Robert Louis Stephenson's dictum that "It is better to travel hopefully than to arrive".

I've gone pretty much for the old hippy self-sufficiency line. The plan is to sell the house, clear off all our owings, and rent a place in rural Fife with a bit of land for hen houses, a polytunnel, fruit and vegetables, beehives; all with Permaculture very much in mind. Translating all this into action is still hanging on the sale of our house. We've found a potentially ideal place to move to, so fingers are tightly crossed. Watch this space

I've made some basic steps already, and am the proud owner of a small flock of bantam hens. The ladies in question provide us with a steady supply of small tasty eggs, and a fair amount of amusement and distraction. Chickens live in tightly ordered hierarchies, involving intrigues and struggles for power from time to time. The Top Hen rules with a beak of iron, but might be deposed at a moments notice if, as an example, she is careless enough to become broody. The other hens then have to re-establish the pecking order, an aptly named phenomenon.

But - chooks are ME friendly creatures - they don't take a lot of looking after, and the reward of glorious fresh eggs is good for PWME (Person with ME) self-esteem. If you are tempted to learn more - look here.

Nasim Marie Jafrey - The State of Me

If you are looking for a great read, look here

Nasim Jafrey's first novel, it took her nine years to write. She is a PWME, and uses her great skill as a writer to include in her novel a deeply accurate description of how M.E. feels. Unconditionally recommended.