After 7 weeks of absurdity I'm finally back online! I coud use this post to give a blow by blow account of my dealings with unco-operative and obtuse Internet Service Providers, but it would probably bore you as much as it does me, so we won't go there.
On the plus side, however, we are now established at the new address. The financial storm clouds have parted, and I have been granted early payment of my pension on the grounds of my ill-health. Combined with the Employment Support Allowance I was granted at my appeal tribunal back in March, I now have a guaranteed income. It's not as much as I used to earn, but it is a good two thirds of that amount, and I'm now spared a great deal of worry.
Moving house with ME is quite an experience. I found that there were days when the sheer need to get things done carried me through, followed by some heavy-duty "payback" days. Oddly, there were a few times my depression, which is normally under control, put in an appearance, despite the steady progress I felt we were making.
I'm sitting here in something of a trance today - yesterday was my regular colonoscopy examination, a souvenir of the bowel cancer I had nearly 20 years ago. To add to the fun, I was examined from both ends on this occasion! The sedative used always gives me a filthy hung over feeling, although I'm happy to report that the test revealed all is well.
It's good to be blogging again, watch this space!
Thursday, 27 May 2010
Thursday, 1 April 2010
Worry, Illness, Guilt
I follow the blog of a young (at least in comparison to me!) teacher who has recently been afflicted by something that sounds very like ME, although I hope for his sake it isn't. Nonetheless, he's laid low at the moment, and has just had to pull out of a long-planned long distance cycle ride.
He's blogged about his feelings about all this. As can be imagined, he's utterly fed up. He feels he is letting people down, and he's worrying about his longer term future.
These are feelings I know only too well, as does everyone else with a chronic condition. I think that People With M E (PWME hereafter) have a special extra burden to bear because of the "controversial" nature of our condition. PWME have a habit of looking quite well when we aren't crashed out on a sofa. We can walk and talk and stuff just like everyone else. It's just that we can't do it for as long, or as quickly. Sometimes, if we stand up too quickly, or bend over rapidly, the game is over. I usually have a couple of really good hours per day in me, and I've learnt how to run my life so I can, to a point, choose when to use them. See me in those two hours, and I look fine.
PWME also have to deal with history of cynicism toward their illness. It was once called "yuppie flu" in the press, and derided as a licence to malinger. There are still vigorous remnants of that attitude to be encountered amongst medical professionals, those who decide eligibility for assistance and a lot of other folk who ought to know better. Charlatans and quacks offer ineffective and inappropriate cures, and in the UK appear to have successfully convinced Government agencies in the case of Graded Exercise Therapy.
What M E needs is what the medics call a "sign" - a clear identifying symptom. The classsic example of this, as well as being a classic piece of medical black humour, is "Custer's sign". This relates to victims of severe traumas like a car crash. If a male victim is found to have an erection on admission, it is an indicator that he has broken his back and may well be paralysed from the break down - hence "Custer's last stand". He's got a real problem, but at least he has no need to convince anyone of it.
M E is much more nebulous thing. Convincing the authorities we are ill is a laborious process. This leads to worry, about being believed, about whether we will have an income, about the progress of the illness. We feel guilty because we are not pulling our weight, we are leaving tasks for others, and we wonder if we have turned into malingerers overnight. On top of all this we are actually quite ill with a condition that varies, but is often highly disabling. Our thought processes are slow, we are forgetful, we are not able to organise easily.
So here's a new acronym - WIG - Worry, Illness, Guilt - for the burdens a PWME carries about. The worry and the guilt tend to worsen the condition, but are built into the experience of ME. Resolving that paradox is a key part of coping with the illness, and I wish all the M E affected readers of this blog success in finding a way through.
He's blogged about his feelings about all this. As can be imagined, he's utterly fed up. He feels he is letting people down, and he's worrying about his longer term future.
These are feelings I know only too well, as does everyone else with a chronic condition. I think that People With M E (PWME hereafter) have a special extra burden to bear because of the "controversial" nature of our condition. PWME have a habit of looking quite well when we aren't crashed out on a sofa. We can walk and talk and stuff just like everyone else. It's just that we can't do it for as long, or as quickly. Sometimes, if we stand up too quickly, or bend over rapidly, the game is over. I usually have a couple of really good hours per day in me, and I've learnt how to run my life so I can, to a point, choose when to use them. See me in those two hours, and I look fine.
PWME also have to deal with history of cynicism toward their illness. It was once called "yuppie flu" in the press, and derided as a licence to malinger. There are still vigorous remnants of that attitude to be encountered amongst medical professionals, those who decide eligibility for assistance and a lot of other folk who ought to know better. Charlatans and quacks offer ineffective and inappropriate cures, and in the UK appear to have successfully convinced Government agencies in the case of Graded Exercise Therapy.
What M E needs is what the medics call a "sign" - a clear identifying symptom. The classsic example of this, as well as being a classic piece of medical black humour, is "Custer's sign". This relates to victims of severe traumas like a car crash. If a male victim is found to have an erection on admission, it is an indicator that he has broken his back and may well be paralysed from the break down - hence "Custer's last stand". He's got a real problem, but at least he has no need to convince anyone of it.
M E is much more nebulous thing. Convincing the authorities we are ill is a laborious process. This leads to worry, about being believed, about whether we will have an income, about the progress of the illness. We feel guilty because we are not pulling our weight, we are leaving tasks for others, and we wonder if we have turned into malingerers overnight. On top of all this we are actually quite ill with a condition that varies, but is often highly disabling. Our thought processes are slow, we are forgetful, we are not able to organise easily.
So here's a new acronym - WIG - Worry, Illness, Guilt - for the burdens a PWME carries about. The worry and the guilt tend to worsen the condition, but are built into the experience of ME. Resolving that paradox is a key part of coping with the illness, and I wish all the M E affected readers of this blog success in finding a way through.
Wednesday, 31 March 2010
The Road and the Miles to Dundee
So, there I was, walking past the bus station in St Andrews on my way to the bank, when a young lady tourist asked me if I knew where the bus to Dundee went from. I did, and I showed her, and she thanked me with a dazzling smile. Improved my outlook on life no end.
Cold winter was howlin' o'er moorland and mountain
And wild was the surge of the dark rolling sea
When I met about daybreak a bonnie young lassie
Who asked me the road and the miles to Dundee.
Says I, "My young lassie, I canna weel tell ye,
The road and the distance I canna weel gie,
But if you'll permit me to gang a wee bittie,
I'll show you the road and the miles to Dundee."
The lassie consented and gie me her airm
Not a word did I speir wha the lassie micht be
She appeared like an angel in feature and form
As she walked by my side on the road to Dundee.
At length wi' the howe o' Strathmartine behind us
The spires o' the toon in full view we could see,
She said, "Gentle sir, I can never forget ye
For showin' me so far on the road to Dundee.
This ring and this purse please accept as a token
And surely there's somethin' that ye can gi'e me,
That in years to come I'll the laddie remember
Who showed me the road and the miles to Dundee?"
I took the gold pin frae the scarf on my bosom,
And said, "Tak' ye this, in remembrance o' me",
And bravely I kissed the sweet lips o' the lassie
And I pairted frae her on the road to Dundee.
So here's tae the lassie; I canna forget her,
And ilka young laddie wha's listenin' to me,
O never be sweir to convey a young lassie,
Though it's only to show her the road to Dundee.
Cold winter was howlin' o'er moorland and mountain
And wild was the surge of the dark rolling sea
When I met about daybreak a bonnie young lassie
Who asked me the road and the miles to Dundee.
Says I, "My young lassie, I canna weel tell ye,
The road and the distance I canna weel gie,
But if you'll permit me to gang a wee bittie,
I'll show you the road and the miles to Dundee."
The lassie consented and gie me her airm
Not a word did I speir wha the lassie micht be
She appeared like an angel in feature and form
As she walked by my side on the road to Dundee.
At length wi' the howe o' Strathmartine behind us
The spires o' the toon in full view we could see,
She said, "Gentle sir, I can never forget ye
For showin' me so far on the road to Dundee.
This ring and this purse please accept as a token
And surely there's somethin' that ye can gi'e me,
That in years to come I'll the laddie remember
Who showed me the road and the miles to Dundee?"
I took the gold pin frae the scarf on my bosom,
And said, "Tak' ye this, in remembrance o' me",
And bravely I kissed the sweet lips o' the lassie
And I pairted frae her on the road to Dundee.
So here's tae the lassie; I canna forget her,
And ilka young laddie wha's listenin' to me,
O never be sweir to convey a young lassie,
Though it's only to show her the road to Dundee.
Mony A Mickle Maks A Muckle
Ever since I posted about the joys of Spring, the weather's been a swine - cold, windy, rain, snow.
The phone company has had a mix up and disconnected the phone here a month before they should have done. I've spent a long frustrating time on the phone trying to get them to take ownership of their mistake and sort it. Meanwhile, I'm still unable to make or receive calls.
I lost my broadband connection for a day as well, although that has now mysteriously re-appeared.
I've got some stupid stomach bug that's making me grumpy.
My head aches.
Thank goodness the news is all still good on the new house front - I've had enough.
The phone company has had a mix up and disconnected the phone here a month before they should have done. I've spent a long frustrating time on the phone trying to get them to take ownership of their mistake and sort it. Meanwhile, I'm still unable to make or receive calls.
I lost my broadband connection for a day as well, although that has now mysteriously re-appeared.
I've got some stupid stomach bug that's making me grumpy.
My head aches.
Thank goodness the news is all still good on the new house front - I've had enough.
Monday, 29 March 2010
Both Sides the Tweed
Here's Mary Black with her gorgeous version of Dick Gaughan's setting of "Both Sides the Tweed". It's a lovely song with a superb sentiment. Beneath, I've put the words and Dick Gaughan's notes about the song, because a bit of context helps.
What's the spring-breathing jasmine and rose ?
What's the summer with all its gay train
Or the splendour of autumn to those
Who've bartered their freedom for gain?
Let the love of our land's sacred rights
To the love of our people succeed
Let friendship and honour unite
And flourish on both sides the Tweed.
No sweetness the senses can cheer
Which corruption and bribery bind
No brightness that gloom can e'er clear
For honour's the sum of the mind
Let virtue distinguish the brave
Place riches in lowest degree
Think them poorest who can be a slave
Them richest who dare to be free
Song Notes - by Dick Gaughan
This was put into this form in 1979 shortly after the Scots returned a majority in favour of a separate Scottish Parliament but the vote was vetoed in the UK Parliament due to the inclusion of the notorious "40% of all eligible votes" clause which had the effect of counting votes not cast as being votes against. There is now good evidence to suggest that the architect of this piece of electoral sleight-of-hand may have been Robin Cook.
The verses call for the recognition of Scotland's right to sovereignty and the choruses argue against prejudice between our peoples. The Tweed is the river which forms part of the Scots-English border and is used here as a symbol of both the need for independence and the need for friendship and co-existance.
The original text was an attack upon the Treaty of Union of 1707 which abolished the independent Scots and English Parliaments and set up the United Kingdom. I made some minor amendments to give it contemporary relevance.
The tune has been the subject of some speculation and argument. So far as I am aware, I actually composed it and am highly flattered by the presumption that it is traditional, with people claiming to have known it for several decades, if not centuries.
There are also people who claim that they heard their grandparents sing Ewan MacColl's, "Shoals of Herring" in the 30s. My mother had never heard of MacColl but used to sing his "Manchester Rambler" which she'd learned from a Lancashire woman in the army during WW2 and always assumed it was an old song from that area. Hamish Henderson once collected a variant of his own "Gillie Mor" from the Borders singer Willie Scott who was quite surprised to learn it was not an old song. And there are those who swear that Eric Bogle's "No Man's Land" is a traditional Irish song called "The Green Fields of France".
For one writing songs in a "traditional" genre, this is the highest compliment imaginable. Like all tunes composed within any aesthetic, it is inevitable that it has similarities to and contains phrases and quotes from earlier tunes. However, if someone can provide a printed or recorded source to prove the existence of this tune prior to 1979 then I'd be delighted to acknowledge that I unconsciously used a traditional tune.
What's the spring-breathing jasmine and rose ?
What's the summer with all its gay train
Or the splendour of autumn to those
Who've bartered their freedom for gain?
Let the love of our land's sacred rights
To the love of our people succeed
Let friendship and honour unite
And flourish on both sides the Tweed.
No sweetness the senses can cheer
Which corruption and bribery bind
No brightness that gloom can e'er clear
For honour's the sum of the mind
Let virtue distinguish the brave
Place riches in lowest degree
Think them poorest who can be a slave
Them richest who dare to be free
Song Notes - by Dick Gaughan
This was put into this form in 1979 shortly after the Scots returned a majority in favour of a separate Scottish Parliament but the vote was vetoed in the UK Parliament due to the inclusion of the notorious "40% of all eligible votes" clause which had the effect of counting votes not cast as being votes against. There is now good evidence to suggest that the architect of this piece of electoral sleight-of-hand may have been Robin Cook.
The verses call for the recognition of Scotland's right to sovereignty and the choruses argue against prejudice between our peoples. The Tweed is the river which forms part of the Scots-English border and is used here as a symbol of both the need for independence and the need for friendship and co-existance.
The original text was an attack upon the Treaty of Union of 1707 which abolished the independent Scots and English Parliaments and set up the United Kingdom. I made some minor amendments to give it contemporary relevance.
The tune has been the subject of some speculation and argument. So far as I am aware, I actually composed it and am highly flattered by the presumption that it is traditional, with people claiming to have known it for several decades, if not centuries.
There are also people who claim that they heard their grandparents sing Ewan MacColl's, "Shoals of Herring" in the 30s. My mother had never heard of MacColl but used to sing his "Manchester Rambler" which she'd learned from a Lancashire woman in the army during WW2 and always assumed it was an old song from that area. Hamish Henderson once collected a variant of his own "Gillie Mor" from the Borders singer Willie Scott who was quite surprised to learn it was not an old song. And there are those who swear that Eric Bogle's "No Man's Land" is a traditional Irish song called "The Green Fields of France".
For one writing songs in a "traditional" genre, this is the highest compliment imaginable. Like all tunes composed within any aesthetic, it is inevitable that it has similarities to and contains phrases and quotes from earlier tunes. However, if someone can provide a printed or recorded source to prove the existence of this tune prior to 1979 then I'd be delighted to acknowledge that I unconsciously used a traditional tune.
In a spin
My head's going like a cement mixer today. I'm just back from the new house, and I'm planning this that and the next thing. Where are the hens going, how do I best use my veg plot, can I get a polytunnel, and what size. I need to build a beehive. I need to get a chainsaw and a trestle for firewood cutting. All great fun - there will be much drawing of plans, scrounging of wooden pallets to recycle into beehives and raised vegetable bed edging, cadging of bulk bags and chipped wood for path making, studying of seed catalogues, setting up of incubator for chick hatching, and all sorts of other fun stuff, all that can be done at a leisurely pace. Low cost, low impact, low input are the guiding principles, though I'll need to make a few investments early on when I get my pension lump sum.
One of these to tow one of those is on the list, for wood-collecting and daily transport for me. I've one of these in mind as well. I'm going to need this and that as well
My veg patch has 13 metres of South facing wall - I could probably grow figs, peaches and apricots against that, even this far North!
I'm enjoying this!
One of these to tow one of those is on the list, for wood-collecting and daily transport for me. I've one of these in mind as well. I'm going to need this and that as well
My veg patch has 13 metres of South facing wall - I could probably grow figs, peaches and apricots against that, even this far North!
I'm enjoying this!
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