FALSE DAWN

Yesterday morning, bright sunshine greeted my emergence into day and, most unusually I was feeling wide awake long before 9.00AM; the general rule is that a state akin to wide awake is rarely [even half-heartedly] achieved by yours truly before 10.45AM! I even felt that my nights sleep had been of a refreshing variety, despite my having run two marathons in one day before getting lost in the centre of an unknown town, unable to find the loos. Dreams are certainly peculiar things!

How could I account for a good nights sleep, dream sequences notwithstanding ; the only aid I could think of was having partaken of an extra shot of macchiato at the Café Culture the preceding afternoon. Now there's a paradox!

Anyway, whatever the reason, this unusually early alertness continued throughout the morning, relatively pain and ache free [a most unusual ante meridian experience]. By late morning I was ready for a walk down to Waitrose with my beloved; the walk entails a 15 minute stretch along the Leeds Road before taking the tree-lined footpath across the stray, approx 7 minutes, and a further 5 minutes in the direction of the town centre. That's one helluva long exercise for me but, I managed it and, even enjoyed the walk back home.

All went well with the day until early evening, when an excruciating sense of despairing helplessness overwhelmed me, the sheer pointlessness of everything. The cause for that dramatic change; I'd started wondering how the hell I could get the tax people to sort out one of my pension providers who tax me on every penny even though, all other incomes having been taken into account, I have a further £3 ½ grand tax free allowance. I've never been averse to paying tax but, having completed endless forms, both prior and subsequent to attaining state pension age, no progress has been made on this front! [The pettiness of the issue is that the monthly payment is a mere £62 gross and I'm having £13 take away in tax each month – but when one feels shattered the whole issue takes on gargantuan proportions].

Even my preparation of the main course for Sunday lunch – always pre-prepared on Saturday evening – held no pleasure for me and, subsequent telly-gawping proved absolutely disastrous. The Vile Twins [that's not their stage name by the way] getting through the first stage of boot camp [we're talking X Factor here] made me quite apoplectic; if ever there was a case to be made for abortion, or even euthanasia, these twin contestants are it. Before their miraculous advance, I'd already declared that their advancement would sufficient to prove that there is no god, no evolution either for that matter!

A further cause of my general sense of irritating helplessness is the constant petty bitching experienced on all of the ME sites run by fellow ME sufferers; no wonder that no progress is being made. Doubtless the condition is a physical neurological one, of possibly viral origin, even though the vested interests of medical insurers and pharmacological industries are more than happy to support the psychologizers arguments.

Where my fellow sufferers find the stamina to continue with their virulent nit-picking squabbles is a mystery to me! I suspect that part of the problem is, by its extremely debilitating nature, this neurological ailment tends to breed a kind of re-active depression. Certainly, in my case, the onset of ME also found (or produced) a far more deep-rooted tetchiness than had been apparent as part my nature for the preceding decades.

Basically, I'm just a little pissed off and you, my dear readers, are the outflows recipients. This morning, my naggingly aching body, had to be forcibly removed from the duvet realm by a sheer effort of will. It seems like I'm almost back to normal.

Meanwhile on Mal's Factory

My most recent posting on my poetry weblog features a video - Twittering Garden, the occasion of which was a prompt for the poem Garden Paradox

MAL's FACTORY - Poetry & Prose Poems: Garden Paradox - Twittering Garden http://bit.ly/qAYvE

Hypocrisy Runs Riot - a little rant

Perhaps it’s the fact that I’ve not been feeling particularly well for the past few days or, it could quite simply be that I’ve rediscovered my sceptical roots; whatever is the case, the news has left me with little to rejoice about.

Superficially, the nuclear weapons non-proliferation agreement at the UN should be a cause for rejoicing but, as one who has constantly campaigned for unilateral disarmament, I find little to celebrate in the agreement. Hypocrisy runs riot.

We offer a meaningless reduction in our arsenal and, simultaneously, threaten further sanctions against Iran (though not by name) should it continue to develop these “weapons of mass destruction”. It seems so strange that our politicians, in defending our nuclear weapons, have always referred to them as a “deterrent” but, should anyone else want them they become weapons of mass destruction.

If they are a deterrent, we should urge every nation to stockpile them; if every nation has a deterrent then, surely, there’s even less chance of a war. But, of course, the argument goes on to wonder what would happen if tactical nuclear devices should fall into the hands of “terrorists”; mind you there’s rarely a mention of the terrorist state of Israel having these same weapons. However we look at it, the admission has been made that they offer no deterrence to terrorism, indeed – they pose perhaps an even greater terrorist threat.

We are constantly being told that “terrorism” is the biggest threat we face yet, we insist on maintaining and enhancing our useless nuclear defence systems at a cost of untold billions of pounds. The more nuclear devices that are in existence, the greater the chance of a terrorist getting hold of them. It may be Obama’s greatest dream to have a nuclear free-world, why not make a start by destroying the existing stockpiles; I have no time for dreamers when they could be doing something practical!

Another news item is the American military’s development of a vaccine against AIDS. It comes as no real surprise that the military are working on this; in fact I’ve always suspected that the disease began as a germ warfare experiment that somehow got out of control!

There’s currently a fuss about sexist ageism at the BBC and a call being made for some female newsreaders over the age of 50 to be employed. I’ve yet to see a newsreader that is severely facially disfigured, or who has a speech impediment; come to that, do we have any newsreaders who suffer visibly from a major physical handicap? Where are the calls for these people to be represented? It would be good to have a newsreader who doesn’t sound like a representative of (that mythical) middle-England for that matter!

All the male newsreaders appear to be compulsive tie-wearers; where is the outcry? Surely there should be demands for a member of the non tie-wearing culture to be permitted to perform this hallowed duty!

Gosh; I feel much better now.

juvenile goldfinch - my latest video

juvenile goldfinch

Mal's Turnaround

Today's blog posting, Food, Drink and Gardening - a little more upbeat than yesterday's post - can be found on 'Mal's Murmurings'.

the impossible is slightly difficult

Some things are just so difficult to explain that one just goes on with life, as best one can, unable to share their "different" experience of "normal" everyday activities. Some chronic conditions, even in their relatively moderate forms, can have the most devastating impact in terms of isolation; the combination of pain, sensory-overload - both auditory and visual (and the accompanying agitation and frustration) as well as an excruciating fatigue (caused by unrefreshing sleep patterns) are quite simply impossible to explain to anyone who has not been there and, together, they conspire to prevent much normal socializing!

Even when the worst symptoms are in some kind of remission, my coping mechanism has hardly returned to it's pre-illness state. There are times when, on a social outing, one feels they are going to explode in response to the immediate environmental activity - be it talking, music, lighting, or quite simply the presence of too many other bodies - then comes the difficult task of making one's "excuse" to depart early from the event.

Frequently I notice concerts, gigs, exhibitions etc that I'd like to attend but, I feel unable to pre-book ( even in my current reasonably well phase) as I'm never sure whether I will have the necessary physical and/or emotional stamina to cope come the day! Even when there's no requirement to pre-book, if an admission fee is involved it always seems an incredibly extravagant outlay bearing in mind that, in all likelihood, I will be ready to leave (unable to stay the course) whilst the event is still in progress. At the recent farewell party for the local vicar, it was amazing to be able to sustain concentration for that part of the entertainment I managed to cope with. My recent visit to Liverpool was a different experience altogether when I wasn't "up to" attending any of the exhibitions I hoped to see, or even dining out at a restaurant in close proximity to the inn where we were staying.

I am blessed in obtaining so much satisfaction from spending time in the garden, watching the avian activity, taking photos and videos etc., playing about on the PC, painting and writing as and when urge and stamina are in sync. I've become, in the process a contented homebird! On many occasions I'm able to manage a short walk but, even that activity has its own little idiosyncracies. This afternoon I took a little walk, at a somewhat slower pace than my recent norm; as I tried to speed up it seemed as if the lower limbs hydraulics were in serious need of an oil change; each movement required a conscious effort, as if I was required to lift my feet from some kind of cloying quicksand. And that was on, what had earlier seemed, a "better" day.

I have no desire to be a Moaning Minnie, it's just that I wanted to try and share something of that which I deemed, at the outset, to be impossible.

The Young Visitor

juvenile goldfinch on Nyjer seed feeder
(click on image to view larger version)

This young visitor, to our garden, kindly allowed me to observe his/her feeding activity from a distance of two feet.

Mal's Mysteries

The Unfathomable Fantail Mystery ... can be found on 'Mal's Murmurings'

a joyous experience

Today is another wonderful unique day. The question is, do I feel better because of my attitude or, is my attitude different because I'm feeling better? I suspect that without the latter it would be virtually impossible to activate the former; mind over matter can only go a small way. For more than 90% of the time my outlook is positive, it's only reality that gets in the way and causes me to stumble.

This morning I sat in the shower and positively wallowed in the experience. A short while later I decided to venture down to 'Open Church', for coffee and a chat and, guess what; as I walked down the road one leg moved in front of the other in a seemingly effortless manner. It's an amazing thing this walking business, enabling one to get from point A to point B whilst, simultaneously, breathing in the air!

Breathing, that's another little miracle, inhale a complex of elements and exhale those not required; it seems like you get rid of all the crap with the minimum of conscious input. The whole process of walking and breathing feels like something worthy of celebration rather than being taken for granted. Having experienced some days when the necessary effort of taking a deep breath becomes a rather irksome task and, the movement of lower limbs causes considerable discomfort, makes it much easier to appreciate how wonderful a state of (relatively) healthy normality really is.

Walking down the road, reciprocating smiles with unknown passers-by, can be such a joyous experience.

Rockin' The Church

Heigh-Ho, Heigh-Ho, and off to church we go .... that's the new blog post on 'The Word of Sinna Luvva'

The Best Laid Plans

Monday 31 August

Although it's the thought that counts, that very thought can militate against one; I suppose it's something to do with "the best laid plans ..." And did those thoughts and plans backfire, on my poor long-suffering beloved; not everyone can turn an 80-90 mile trip into a distance more akin to 200 miles, partly attributable to road maps being scattered over a few separate pages of an atlas - spatial sense is shown for the feminine virtue it truly is - and her desire to save me the stress of going via the M62, far from my favourite stretch of road.

Having travelled for best part of two hours, I suddenly became aware that we weren't passing through any of the urban villages (of Lancashire) that I'd anticipated; rural idylls (of both Yorkshire and Cumbria) were the order of the day but, having taken this pleasant alternative route we reached the M6 at a point from which our destination goal wasn't much less of a distance away than it had been at the outset of our journey. (As aforementioned, all of this was the result of Helen's best intention to avoid the much loathed M62 route). For the first several miles on the motorway it was difficult to exceed 25mph, the slowest part of the journey so far.

The one thing of which we were certain was that we now had to head down as far as junction 26 and the M58; so far so good. Just for confirmation we switched on the satnav - destination address already programmed in and, this is where the real fun began. We missed a turn at which our destination was a mere 5.5 miles away and, as the amazing technological device re-planned our route, within a matter of minutes it was a mere 12 miles away. Further down the route we passed a familiar landmark which we knew to be within a few minutes drive of our destination but, the satnav would have none of it! A further twenty-five minutes down the line the satnav continued its wild goose chase eventually telling us that we'd reached our suburban destination when reality demonstratively disclosed the fact that we were actually in the city centre, Liverpool 1 and not Liverpool 19. We'd already been forced to make a few U-turns, and other probably illicit moves, having been directed wrong way into one way streets etc. ... etc ...

Eventually, we arrived at the Innkeepers Lodge, moved in our cases, before venturing around to visit Kathleen, Helen's step-mum, which was a simple ten minutes walk. No navigational problems there but, exhaustion had set in for this bad traveller. The walk back to the hotel proved a little more perilous; through heavy lidded eyes each road, strreet, avenue appeared much the same and my intuitive compass had gone on strike. That's when the dreaded panic set in; chest tightening, breath taking, muscle-spasming painfulness kicked in and all I wanted was to be back home! To be honest, home is the only place and sensation that I really care for; the idea of a break away being relaxing is anathema.

Tuesday 01 September

Taking advantage of a generous breakfast, included in the room price, necessitated me getting up from my bed to walk at a rather earlier hour than has been my norm over recent days. Cereal, probiotic yoghurt, fruit juice, toast, pain au chocolat ... who could ask for anything more; well perhaps a doggy bag was in order to sustain us in that large interval between breakfast and evening meal. Having allowed twenty minutes for breakfast to settle, off we went to Kathleens once again for a little chat and the opportunity to take a few snapshots and a little bit of video-ing. We were back to the inn shortly after 11.30AM, in my case for a much needed rest and, for my beloved, a chance to catch up on some reading. There are definitely some exhibitions at Liverpool's Tate Gallery but, at this stage my reserves of both physical and emotional stamina are still a little battle scarred from yesterday's adventures.

Who knows what the rest of the day will bring but, I am looking forward to a meal at Mad Harrys this evening (technically it's the 'Madhari Tandoori Restaurant' but it's a name that becomes affectionate in my accidental(?) pronunciation)! Mad Harrys is directly opposite to the main door of our temporary habitation. Last night we ate at the Toby Carvery, adjacent to the lodge where we are staying, where I enjoyed a baked sea bass along with a generosity of self service potatoes and vegetables. I even decided a Yorkshire pudding would make an interesting additional accompaniment. Meantime, my beloved settled for the carvery turkey.

********

Once more the best laid plans were destined not to be; the rest of the day turned out to be a devastatingly tortuous non-event. Severe muscular and abdominal discomfort led to an all pervasive sense of nausea though, come late afternoon / early evening went out for a little fresh air in the hope of reviving or creating some semblance of an appetite. The effort was to little avail. No sooner had we seated ourselves in the Indian Restaurant than the sense of nausea returned with a vengeance; at least we were able to leave before we'd had a chance to place an order. My only desire was to be back home in Harrogate whilst simulataneously the thought of making the journey was far too much to cope with.

Most of the day and evening was spent in totally restless attempts to rest. Somehow my biological clock can't cope with dramatic changes such as arising from my bed before mid-to-late morning but, it had seemed necessary to partake of breakfast (at an unearthly early hour) as I felt the need to obtain something in return for the nightly room fee. I did manage a pint of Thwaites 'Bomber' in the afternoon, sweet upfront with a sustained dry bitterness lingering on the palate, a much more satisfying drink than the Long Shadow Chardonnay, of the previous evening, which turned out to be flavoursomely oak laden at the beginning but, became an unremittingly tedious monotony before the glass was half-finished.


Wednesday 2 September

After a night of intermittent sleep, I managed to pluck up the courage to take a shower. Whilst in no way considering myself disabled, it suddenly occurred to me that I had quite a high degree of dependence on the shower seat at home whereas here, no such luxury was afforded. So, short and sweet showerlette was in order and, I emerged marginally refreshed to venture across to the carvery for breakfast.

This evening we'll be ambling around to Kathleens for dinner; the trip to scouseland proves worthwhile if only for the opportunity to visit Helen's stepmum but I doubt that I could cope with a visit to the Tate or even a more local gallery. Even when one is feeling relatively better than had been the case for a few years, ventures away from the familiar homestead prove a testing ground too far.

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

As I shuffled from chair to door, my wearily aching lower limbs decided that an occasional knee tendon spasm, and buckling from the knee, was an ideal way to restore my confidence. That's the point when we remembered that I'd not brought any of my walking sticks with me. My beloved popped down to the bar to see if, by any chance, there was a spare walking stick available and, managed to obtain an umbrella of appropriate length to proffer some support (an item of unclaimed lost property). This enabled me to get out for a little stroll in reasonably close proximity to the inn.

Late afternoon found us once more at Kathleens, to enjoy an evening meal.

Thursday 3 September

With the desire to get home by the quickest route possible, decided it was worth risking a trip along the M62, succesfully relying on the satnav to discern the best exit strategy for a comfortable journey home. My only panic attack occurred within one mile of our departure point, when abdominal and chest muscles once more militated against common-sense. Helen suggested we head back to the inn but, common-sense prevailed and, the desire to get home, in spite of immediate terrifying discomfort, was much greater than the need for instant relief! Once we hit the dreaded motorway, the symptoms were soon ameliorated.

The delight of reaching home, in a mere couple of hours, bore witness to the greatest transfiguration since Jesus met the two old geezers on the mount! How wonderful to smile freely once again.

Time Consumption

It's just so amazing how time-consuming doing nothing can be! Actually, when one takes account, it's remarkable how much one actually gets done whilst they think they're doing nothing; cooking a few meals, pottering around the garden, creating a new website and modifying the old, writing a couple of poems, feeding the fish. Quite frankly, I'm surprised that I found the time to do all that in the midst of doing nowt!

Geocities having given up their free hosting service, Webring very kindly transferred my original Geocities site to their free hosting space. Bravenet have now decided to go the same way - in their case limiting the amount of webspace to 5MB. As I have several free sites on Bravenet, (Mal's Paintings, HelMals Garden, HelMals Bravehost, Mals Poetry etc.), it seemed easier to pay up and keep them all online, as well as setting up a revamped version of our Luv4Sinners site on my very own domain (that's something I've never bothered with before). New Luv4Sinners.

Due to my usual impatience, I can't promise that everything's done right and, having prepared the new site on my laptop I (at last moment) discovered that the display was hopeless on Internet Explorer even though it displayed correctly on Firefox so, adjustments were called for and, I suddenly found the situation had reversed. Minor irregularities apart, I decided it was time to upload the site, utilizing my very own domain, as it was. I'm quite fond of its home-made appeal anyway, I'm too busy to await perfection. You can tell that it was done on the hoof as one or two individual pages would have been better placed in the relevant section but, I had to hurry back to my busy doing nothing phase; just as well it's not a commercial venture!

As I've been so busy doing nothing this posting may appear on another blog as well (different readerships you know, but this site is the most select!).

WoT anomalies?

No doubt the WoT (Web of Trust) is a useful(?) browser plug-in, giving ratings and warnings for various websites but, it certainly proves perplexing at times. I receive a daily e-mail from The Guardian and, I'm always surprised to find that all the links are accompanied by a red circle (of danger). When I click the link to read an article of interest, I'm invariably greeted by a WoT warning page, "This is a bad site .... are you sure you want to continue" (or words to that effect). On reaching the page the browser is always marked with a green circle (safe, trustworthy etc.) I've tried to give my rating to the Guardian pages, via their warning page, to be greeted with a message "oops, something seems to have gone wrong". I'm puzzled; how does a 'dangerous' site suddenly become a 'safe' one by the simple expedient of visiting it?

This example makes me wonder about the safety of the sites that they declare to be safe; is it worth using this application at all?

Another little anomaly I've found, this time with IE8, my surfing being done using either / both Firefox and IE, is that when I close IE8 it's not unusual to be greeted with the message that IE has stopped working and they'll try to find a solution to the problem. Surely, in these instances, the real problem would be if it didn't shut down!

New Poems

I've just posted new poems on both 'MAL's FACTORY' and 'ARCHIVE MINED'

Creepy Apologists

Don't you just hate it when, each time violence erupts at or after a football match, the apologists creep out of the woodwork to state that "these (hooligans) are not football fans!"

I'm definitely not a football fan and, I deplore the accusation that it's people like me that cause the violence.

DOWN TIME

I'm greatly surprised; "the system's actually working" (he says touching wood, and holding a lucky rabbit's foot - well maybe the rabbit wasn't so lucky!).

Over the past couple of days I've been experiencing as much downtime, so far as internet connectivity is concerned, as full connectivity yet, my ISPs (Virgin Media) status report suggests there are no problems. I've run checks on both laptops and PCs using both wireless and ethernet connections, even bypassing the router with the latter but, the problems keep recurring. [Strangely the ISP does report intermittent e-mail outages but, not any broadband downtime!]

Perhaps the problem is extremely localized; whatever is the case, the high proportion of downtime tends to bring me down with it.

The Hummingbirds Foundation for M.E. (HFME)

Just wanted to share this exciting news:



*Please repost widely* *Please repost widely* *Please repost widely* *Please
repost widely* *Please repost widely*

This month A Hummingbirds' Guide to M.E. makes way for a new organisation:
The Hummingbirds' Foundation for M.E.

See below for details!

-------

A new international, uncompromising Myalgic Encephalomyelitis charity has
been created!

The Hummingbirds' Foundation for M.E. (HFME) is a new international M.E.
charity (founded by Jodi Bassett).

The HFME's mission statement:

"The HFME is dedicated to fighting for the recognition of Myalgic
Encephalomyelitis based on the available scientific evidence, and for
patients worldwide to be treated appropriately and accorded the same basic
human rights as those with similar disabling and potentially fatal
neurological diseases such as Multiple Sclerosis."

As many of you know all too well, the situation facing M.E. patients
continues to worsen.

It is so rare to read information purely about M.E. any more, that doesn't
mix in a large amount of 'CFS' misinformation. Flawed concepts such as
'ME/CFS' and 'subgroups of CFS or ME/CFS' are also unfortunately gaining
popularity.

No matter how you look at it, it seems that it will be impossible for us to
make any progress with M.E. advocacy without some more uncompromising
advocacy groups.

The HFME is not only a genuine and uncompromising voice for M.E. patients
but also speaks up on behalf of all those patients misdiagnosed with 'CFS'
who have other diseases, and who also deserve a chance at correct diagnosis
and appropriate treatment finally.

M.E. patients and patients misdiagnosed with 'CFS' who have non-M.E.
diseases need to, and can, work together to achieve common goals. Fighting
for the bogus disease category of 'CFS' to be abandoned benefits all patient
groups.

The HFME acts in response to facts, logic and ethics. There is no other
agenda than helping all the patient groups involved to finally be treated
justly and in a scientific and ethical manner, and accorded the same basic
human rights those with many other diseases take for granted.

I hope you will want to be a part of this new initiative. Most involved are
very ill and disabled, and so we need a large amount of people to become
involved and to each contribute the small amount of time and effort that
they can spare, for this to work.

Even though many of us are very ill, we can move mountains if we each
contribute what little we can and work together with integrity and
intelligence. (Friends and family members of patients etc. are also of
course welcome to participate too.)

Please email me (Jodi Bassett) for details.

Paid membership in HFME is not yet available, but will be available soon.
The organisation of the foundation is still in the early stages, although
the HFME website is now complete.

To view the new Hummingbirds' Foundation for M.E. website, or to learn more
about the HFME, please go to: www.hfme.org



------

What are the aims of the HFME?

*To disseminate scientifically accurate information on Myalgic
Encephalomyelitis (M.E.) to M.E. patients; to their carers, family and
friends; to the medical profession and other professions which deal with
M.E. patients; to policy makers; to M.E. advocates and activists and to the
general public as per the paper What is Myalgic Encephalomyelitis? and as
further discussed in HFME.

*To oppose false and meaningless disease categories such as 'CFS,' 'CFIDS,'
'ME/CFS,' 'CFS/ME,' 'ME-CFS' and Myalgic 'Encephalopathy' as per the papers
What is Myalgic Encephalomyelitis? and Myalgic Encephalomyelitis is not
fatigue, or 'CFS' and as further discussed in HFME.

*To defend the M.E. community (and those with non-M.E. diseases misdiagnosed
with 'CFS') from counter-productive 'activism' strategies such as renaming
'CFS' with some variation of the term M.E.

*To promote appropriate research based on proper understanding of M.E., and
to oppose flawed concepts such as the 'subgroups' of 'CFS' or 'ME/CFS'
concept.

*To be a voice for those suffering from M.E. who are facing mistreatment and
abuse due to the false notion that M.E. is the same thing as 'CFS' and is a
trivial illness or a mental illness characterised by 'fatigue.'

*To be a voice for all those patients misdiagnosed with 'CFS' who do not
have M.E., but other illnesses including: cancer, fibromyalgia, various
post-viral fatigue syndromes, athlete's over-training syndrome, Lyme
disease, Behcet's disease, PTSD, depression and other mental illnesses,
burnout, thyroid or adrenal diseases, various vitamin-deficiency diseases,
and so on. To encourage each of these patients to reject their 'CFS'
misdiagnosis and seek a correct diagnosis and appropriate treatment,
finally.

*To enlist the help of human rights groups, medical professionals and the
quality media to help to achieve the above stated goals as is their
obligation and duty. (A duty that has unfortunately been almost completely
ignored for the last 20 years, with a few notable exceptions).

This is a summary of the full text. To see the full list of aims, and a
discussion of the reason for each aim, please see:
www.hfme.org/abouthfme.htm



------

HFME shirts and badges etc. are now available at Cafepress

Lots of different items are available featuring the HFME logo, to help
spread the word.

Check out:

www.hfme.org/hfmeproducts.htm



-------

What will happen to the old HGME website?

The www.ahummingbirdsguide.com

website will be maintained for some years to
come.

It is no longer appropriate that the main website (the HFME site) also serve
as my personal site and feature and sell my artwork and so on, so this site
will become my personal website. A small number of minor pages of the HFME
website will continue to be hosted on this site however due to the huge
amount of work required to transfer over every single page (this applies
almost wholly to research and article pages by featured authors). The site
will also host redirection notices for one year. The site will also feature
a small amount of information about M.E. taken directly from the HFME site,
in order to educate anyone who comes to the site about M.E. and the HFME,
and to direct them to the HFME website and the work of the HFME.

Please update all links and bookmarks accordingly. Webmasters please note
that redirection notices will only be left up on the HGME website for one
year (until July 2010). Apologies for the inconvenience.

-------

I hope you are as excited about this new venture as I am and I hope you will
want to play a part in the HFME and the setting up of the HFME.

I hope you will help to spread the word about the HFME as much as you can.

Best wishes everyone,
Jodi Bassett
--
The Hummingbirds' Foundation
for Myalgic Encephalomyelitis:
www.hfme.org

Theme & Variations

Yesterday the Café, today the Bistro, hope you enjoy reading about how the other half lives! The day, for me, started rather agonizingly slowly; customary pains and spasms in the lower limbs had found themselves some co-operative companions in the form of aching upper limbs and congested head and torso. Sleep had been so badly needed that it proved hard to come by; relaxation was required but stress was all that was available, stress not of a psychological-emotional variety but rather an uncooperative body.

Exhaustion proved such that I forgot to take the pain-killers yet, without these mind and body were unwilling to function in any manner that one would like to consider normal. Eventually, after 13 hours of bed restlessness, it required a great deal of effort to greet the early post-meridian sun. Only when pain cancelling medication had been taken was any degree of wakefulness apparent. An early afternoon bowl of cereal set me up for a little venture out into the garden, a place where I really feel at home and fully alive.

Contrary to the popular saying about the devil finding work for idle hands, in my experience it’s a garden that performs this task. (Of course, some would see that as the abode of the serpent hence proving the folk sayings credentials). There’s always a little task to perform in terms of pruning, re-arranging or general tidying up and, today was no exception. Strangely, the requisite effort seemed to re-vitalize me, even to the extent of venturing, loppers in hand, into next doors garden where several branches of our wayward shrubs and trees had seen fit to trespass. A few mugs of Earl Grey proved an invaluable aid to the performance of these duties.

By late afternoon, appetite aroused, I led my beloved by the hand to our local Crepes & Crocs Bistro at ‘The Milepost’, in time to take advantage of their Early Bird Menu. We both enjoyed a fishcake starter, served on a bed of green salad with a sweet lightly spiced sauce. For the main course I settled for the Toulouse Sausage and Mash, whilst my OH had the Fish Pie, sharing a side dish of garlic beans between us. To add to the sense of occasion we enjoyed a bottle of Loire Sauvignon to whet the palate.

On our return home, culinary chores beckoned as I prepared my own variant Country French chicken casserole dish in readiness for our Sunday lunch. Currently we’ve settled down to watch the 1944 film, “Farewell My Lovely” the overture to BBC4’s weekend of film noir. Adorable company and a decent movie, what more can anyone wish for? Perhaps a glass of Chardonnay!

Westgate - Customer Dis-service

A few weeks ago we ordered a new double bed for our spare room from Westgate Department Store in Harrogate. As this store is a part of the Anglian Co-op, we were happy to be supporting the co-operative movement.

Early last week we were informed that the bed was available for delivery and, that they would deliver it today, no hint could be proffered as to AM or PM delivery. The charge for delivery was an exorbitant £30+ and, full payment for both the bed and delivery was already charged to the credit card at the time of ordering.

Come the big day and, the component parts of the bed were delivered, or should I say dumped, in full packaging in the bedroom. Evidently unpacking and assembly is not part of their job, although a local shop from which we brought a bed a couple of years back assembled the unit for us and, all for a much smaller “delivery” fee.

We started to unpack the base components only to find it virtually impossible to open the drawer, in one of the base units, in which the castors for that unit are packed. After some twenty minutes of struggle, simply trying to open the drawer, we gave up our efforts and decided to contact the local store. Currently we’re still waiting to hear when they will send someone out to help us with this predicament.

As suggested earlier, we were supporters of the co-operative ideal (overlooking the capitalist warts of the institution). Next time we’ll choose a store that looks after its customers rather than go with a misguided whim of principle. Westgate Department Store, Harrogate, is unlikely to be honoured with our presence in future unless they get their finger out!

***********

P.S. The man arrived within a couple of hours to release the drawer. Contrary to the information given by the person in the Beds & Bedding Dept., given to my beloved, that our problem was "most unusual, I've never come across that before" , his colleague who released the jammed drawer commented that it was a "quite regular occurrence" when they were assembling beds for display purposes in the showroom.

There seems, to me, a slight discrepancy between "most unusual ... never ... before" and a "quite regular occurrence". One can only wonder aboutt the frequency of the never before information being given to a slightly disgruntled customer. This kind of disinformation would seem to me rather like applying flame at an oil refinery rather than pouring oil on troubled waters.

*PPS A much calmer post, THE VISITOR, can be found on my 'Mals Murmurings' blog.*

New Poem

I've just posted a freshly minted poem, SPIKE, on my "Archive Mined & Freshly Spun" poetry weblog.

If blogger will allow me in, as it seems to be working once more, I may post it on 'Mal's Factory' too.

Recently Unearthed & Newly Created

I just recently unearthed this oil painting of mine, BEAT POET & FLOWERS, when sorting through a few neglected portfolio cases. It was painted in 1967.





This is an image of my most recent watercolour painting, MARKING TIME, which I completed a couple of days ago!

Time on Mal's Hands

My latest blog posting, SHORT DAYS AND LONG HOURS, can be found on 'Mal's Murmurings'

LISTENING

It’s more difficult than you’d imagine to listen to one’s body. When things are going well, as has been the case for the past few months, with a paucity of trigger alarm signals, one becomes blissfully unaware of their own limitations. Managing a bit more here, and a bit more there, the extra effort seemed as if there were no toll to pay; the boundaries of my physical and mental effort have extended dramatically, way beyond what would have been my wildest dream during most hours, days, weeks and months from late 2003 to early 2009.

One takes the occasional trivial setback in their stride so, it came as something of a shock, this morning, when my head, torso and limbs were all suffering from several of the symptoms and sensations that so frequently blighted my being during that earlier period. Thankfully, they were only present as a pale reflection of their former intensity; even that was sufficient to prevent me continuing a leisurely stroll, on which I’d embarked mid-morning, to ‘Open Church’. That’s when I realized that I’d been losing the knack of ‘listening’ to my body, overdoing things a bit in my complacency. It’s almost as if I’d become too positive in my outlook; mind you, if positive thoughts had been a “cure” for ME-CFS I wouldn’t have ever succumbed in the first place.

So, it has been a lazy day for me, enhanced by listening to a new CD, ‘Tortured Soul’ by Danelle Harvey; the lady in turn rocks, grooves and tenderly coaxes her own words into life in these songs. Although the title of the album, and indeed the subject matter of some of the songs, could lead one to expect a ‘downer’, it’s the artist’s vitality and resilience that shines through.

Not only have I been taking stock, renewing my vigilance, when it comes to listening to my own body, I’ve also had the pleasure of listening to an inspiring singer / songwriter.

The Garden Blooms on 'Mal's Picturebox'

Three new close-up photos, 'THE GARDEN BLOOMS', can be found on 'Mal's Picturebox'.

Garden Matters

Yesterday evening I prepared a couple of web albums with pictures of our garden but, unfortunately, encountered a few problems when I attempted to upload them to add to our Luv4Sinners website (paintings, poetry, personal), recently transferred by Webring from our soon to be defunct Geocities website.

Having spent several hours pottering about in the garden, both this morning and afternoon, with frequent intervals simply idling on one of the garden seats. I thought it was time to do something with these albums. This evening I prepared a welcome page, to accompany the albums, and uploaded them to a new free site on Bravenet. "HELMAL's GARDEN" can be visted at http://helmalsgarden.bravehost.com/main.html. If you omit the main.html, you'll quite simply land on one of the albums rather than the welcome page (I was too lazy to modify the individual html pages of the second album I created, thus leaving that album as the "index").

You're welcome to visit HELMAL's GARDEN.

Fleeting Moments

I'm still enjoying playing with my new toy - this time it's bumble bees and butterflies that go fluttering by!

DAILY RAMBLINGS

DAILY RAMBLINGS

Just an ordinary day; you can’t get much more extraordinary than that! ‘Ordinary’ suggests some kind of stasis, whereas life is dynamic; I fail to understand why I ever think of any day that way. Yet, that is and just was the case; of that terrific disservice to the value of each moment I plead guilty!

Each new day we enter is a day of opportunity, a time to appreciate or a time to waste; all too frequently I spend a generous portion of the morning in bed, catching up on the sleep and, strangely, obtaining a quality of rest which the preceding hours never quite managed to attain. I do not, any longer, make this into a source of guilt but rather, take it as a necessary preparation for the full appreciation of the remainder of these twenty-four hours.

Upon emergence, and consequent merging into the stream of daylight hours, an ambling stroll up the garden, observing the minimal changes, to plant growth and decay, in both the cultivated and the more natural areas of our mini-estate, seems an essential prerequisite to my enjoyment of the day. It’s difficult to imagine how I possibly coped with living in a second floor (third floor in stateside terminology) apartment; perhaps I quite simply existed rather than “lived”. On the other hand, I do realize that what you’ve never had you can’t really miss!

There are inevitably occasions when my, Marxian inspired, political nature leaves me feeling rather at odds with this “spiritual” passive acceptance of my lot but, campaigning burn-out occurred many years ago. Social sympathies remain unchanged, despite my decrease in physical and emotional stamina; capitalism continues to eat itself, greed rules and, as a result, much of the world is quite simply a bloody mess. Pharmaceutical companies continue to leak laboratory strains of virus only to cash in on the need for an antidote; those prepared to stamp anyone down succeed in business; Palestinian Arabs are turned into homeless helpless victims on the very lands which are their birthright, as the persecuted have become the persecutor and, it seems as if morality is just another word for unenlightened self-interest.

The utilitarian ethos of the greatest good for the greatest number has been turned into an excuse for trampling on the rights and freedoms of all those who deign to challenge the status quo!

Sorry, I’m rambling again – I’ve almost lost the original thread – what was it? Oh yes, I remember, the extraordinariness of the everyday. These days, I’m overwhelmed by the simple occurrences of nature, the exhilaration I find in hearing the schnuffling - schnaffling sound of a hedgehog emanating from the vicinity of the birds’ ground feeder, the moths flying out from the long grasses as I take a twilight stroll up the garden, the sheer richness of life’s tapestry.

I can’t ignore the suffering that goes on all around us and, in spite of an accompanying sense of helplessness, I attempt to bear up in thought, prayer and occasional action, those who are in need and pain. In the words of a song by one of my favourite contemporary singer songwriters – Danelle Harvey – I’m ONLY HUMAN.

Testing the tiger: Reflecting on military chaplaincy – article on Ekklesia

Testing the tiger: Reflecting on military chaplaincy

“Caesar, the state, the organisation, the institution, is symbolically the holder of power in any community or the defender of the status quo. The military operates at one extreme end of that continuum of power where their job is to apply the maximum amount of force on the enemy. Anything else, marching bands, flood relief and I daresay, peacekeeping, is a distraction for when there is no enemy.

A clergy person’s calling is different; to sit at the opposite end of that continuum of violence, where vulnerability, woundedness and the beauty of brokenness are valued. Our hero is grounded in his tradition but counter-cultural, questioning institutional violence with the ultimate challenge of non-violent vulnerability.”

- Sande Ramage

A wonderful sense of irony pervades this article; what else could we expect?

“On the day I closed my study door and walked away from the military, I smiled as I noticed again one of the many posters saying "no to inter-personal violence", which plaster the public noticeboards around Linton Camp.”

- Sande Ramage

Testing the tiger: Reflecting on military chaplaincy

A Special Privilege

Some events quite simply serve to put one’s life, with all its privileges and setbacks, into a more realistic perspective. Some people, though still young, brighten the lives of all those they encounter; without these people the world will be much poorer but, at the same time we can count it a real blessing that our paths have crossed.

Today, my younger step-daughter, Cathy, received the news from a friend (one who has been a friend, confidant, travelling companion right through from childhood) that the friend has been given 9 – 12 months to live. The friend, Kate, a remarkable and radiant young lady, is 28 years of age and, 21 weeks pregnant; it seems as if the pregnancy, and its accompanying hormonal imbalance, may have hastened the growth of a brainstem glioma.

It’s only a couple of years ago, after much humming and hawing by the medical profession, that a tumour was removed. In spite of the loss of peripheral vision, epileptic seizures, chronic migraines, Kate always has a ready warm smile for all whom she meets. Having been given the “all clear”, she was assured that the best course of action was to get on with life as normal and, yes, it would be alright to start a family. (The latter advice, in retrospect, seems to have been more than a little suspect).

Last year Cathy had the privilege of attending Kate’s wedding, when Kate married Luke, a young man from Essex she had met during her travels in Australia with Cathy. Cathy has always been determined that Kate would be her bridesmaid when she marries!

The news has been devastating to all of us and, as Cathy says, it’s impossible to imagine a world without Kate. Certainly the world will be much the poorer when the inevitable happens.

The only time we have is now, and whilst our thoughts and prayers go out to and for Kate, her family and all her friends, we must always remember the privilege of sharing / having shared the same planet!

Weakened Weekends and Travail Aids

Saturday evening is usually my major cooking time, when I prepare the meal for Sunday lunch-time, which usually also suffices for our needs on the Monday and, in variant form provides the main component of a further meal later in the week. This Saturday proved an exception, to the normal routine, as I was too achingly exhausted to attend to such matters.

Even Sunday morning found me too de-energised to make amends so, a frozen Sainsbury’s Chicken Tikka Masala for two served to fill the gap (admittedly it was more on the scale of an appetizer) accompanied by my specially prepared rice. As I usually prepare curries from scratch, this make do meal proved less than satisfying; it was rather like having a ketchup infused chip shop curry sauce with one or two thumbnail size pieces of meat (which could have almost passed for lumps in the gravy) by way of texture.

I’ll definitely try not to repeat this mistake but, I’m pleased I did not forego the BBQ on Saturday afternoon, held at a farmhouse on the Helperby Estate, the home of one of the doctors from the practice where Helen works. This minimal bit of socializing was the reason for my shattered-ness, and subsequent lack of culinary endeavour.

Apart from excellent company, and host provided musical entertainment, I also managed (with a little perseverance) to take some video footage of the House Martins paying fleeting visits to their eaves supported nests. In fact the video camera was frequently utilized in my attempt to catch the flavour of the occasion and, my SLR also came into its own for this purpose.

******

Having partaken of our (excuse for) a Sunday lunch we ventured out to the retailer who had supplied the RAC satnav, which I bought back in May for Helen’s birthday, highly dissatisfied with it’s very limited database and the temperamental software which made it nigh impossible to succesfully download and install an essential update.

The assistant manager initially argued that the model we had purchased was “fit for purpose” providing it could get you to a destination, regardless of the fact that several long established addresses were beyond the scope of its database; it seemed to me a bit like saying if you bought a car and it made one journey successfully, after which it broke down, it was fit for purpose as you’d been able to get in and drive for that one journey! Despite my initial frustration with this explanation, he did demonstrate alternative means of searching its limited database and proved most helpful in our quest. The store manager admitted to the limitations of this particular model (other than for finding a city centre) and, allowed us to do an upgrade exchange for a better equipped ‘Tom-Tom’ model; I’d sooner pay the extra for something which more satisfactorily fulfils its intended purpose. As an easily un-nerved and discomforted / disgruntled traveller, the ‘Help Me’ function of the new device, clearly demonstrated by the assistant manager, should prove a great boon!

Downloading recommended updates this morning proved a doddle!

*******

On our return home, the contents of a pot of Fair-Trade filter coffee were eagerly consumed by ma belle et moi whilst sat beside the garden pond, a necessary pick-me-up! By this time I felt sufficiently energized to tackle a little maintenance work at the wildlife friendly end of the garden. Our hope and intention is that the whole of the garden is wildlife friendly but, I refer to the area of more rampant wildflower and shrub growth! I’m increasingly of the view that these “natural” areas of one’s estate take far more management than the cultivated ones! Ma belle busied herself tidying up elsewhere in the garden, managing to demonstrate her special gift for losing the implements which she has just been using on several occasions.

Mobile Double Dis-Service

From early next week all UK mobile numbers will be in a directory; anyone will be able to call you!

To unsubscribe before the beginning of next week go to: www.118800.co.uk and click on 'Ex Directory' at top right hand side of page. A code will be texted to your mobile to enable you to go Ex-Directory.

Unfortunately if you go to the site at present the Service has been suspended: message reads -

"Service suspended whilst we make improvements

'The 118 800 service for mobile phone connections is currently
unavailable - from this website and by phone - whilst we undertake major
developments to our 'Beta Service' to improve the experience for our
customers. We'll be back as soon as possible with the new improved
service.

All ex-directory requests made by people in our directory to date are
being processed. There will be no need to resend these requests. And we
will take further ex-directory requests when the service resumes. We
will not be taking ex-directory requests by phone or text whilst the
service is not operational.

Please do not call us on 118 800 for anything other than landline
directory enquiry requests as you will be charged for the call.

For other enquiries email us at contact@118800.co.uk or write to us at 118 800, PO Box 2747, Reading RG30 4ZQ

Sorry for any inconvenience caused."

I have tried e-mailing them at the contact address - contact@118800.co.uk in the hope that we can avoid yet another unwelcome dis-service.

As infrequent mobile users, strictly for emergencies, we are already subjected to unsolicited texts from 'Orange' our Service (?) Provider, I can only imagine the amount of "spam" we will be subjected to when the directory goes 'live'.

The Lightning Process Didn't Work For me

I really recommend this blog posting:

The Lightning Process Didn't Work For me

A refreshing account from a moderate ME sufferer of the methods employed by Lightning Process practitioners. Perhaps the process could help someone suffering from a depression related fatigue but not a real ME sufferer.

Prior to my current remission, as a moderate ME sufferer, my concentration span was frequently limited to a few minutes and, unless the room was darkened and a bed supplied for me to rest on, a few minutes of this positivity gobbledegook would have seen an immediate deterioration in my condition.

Negativity is not the cause of this neurological condition (M.E.) hence the whole premise of the process is invalid so far as ME is concerned.

Another Thread

A short posting, under the 'Commerce' category, A THREAD OF INCOMPETENCE, can be found on my 'Mals Murmurings' blog!

The Scandal of Privacy

So now we have a hacking scandal; the mobile ‘phones of celebrities and politicians have evidently been hacked by private investigators employed by staff of ‘The News of The World’. I don’t understand what’s so outrageous when, here in North Yorkshire, on our own doorstep at Menwith Hill we have a government condoned American spy base allowed to intercept all forms of telecommunication.

An occupation force is evidently allowed much greater freedoms than the so-called free press.

On Parole

Over the course of the past few weeks, great steps forward have been achieved! What I would have considered minute shuffles, in pre-illness times, now seem like immense strides in terms of progress. Increased activity levels have been only moderately counterbalanced by achingly exhausted collapses; the all too familiar roller coaster experience has been transformed into little more than a kiddies replica of the real thing.

Perhaps the greatest advance was a walk into town, the first time I’ve been able to manage that in almost six years and, more importantly, being able to cope with all the audio-visual experiences a town centre throws at one. This comes in the wake of throwing off a chemical lifebelt of anti-depressants, which were supposedly easing my anxiety / panic attacks!

An early morning dose of tramadol hydrochloride (initially prescribed on a more intensive basis to cope with the pain caused by a herniated disc) serves to alleviate the muscular stiffness and spasms which have long been my faithful companions. As a result I have been able to manage more short walks, on top of carrying out various tasks in the garden and my regular culinary activities.

Somehow, the advent of my full pensionable status seems to have coincided with an upturn in my general sense of wellbeing. Perhaps part of it is the newly found freedom from guilt on my better days; the thought that I should attempt a return to gainful employment is no longer part of my agenda. The expectation that I could have done so was totally unrealistic on account of the unpredictability of this condition. Even the re-invigorated Malcolm is still subject to the whims of an achingly exhausted body and, it would be foolish to ignore the more insistent corporeal demands for rest (unless a sense of masochism longed for a painful relapse).

Meantime, I simply give thanks for being paroled from the ME – CFS prison.

SENSATIONAL

I was just in danger of falling into that heard it all, done it all, seen it all trap (with and without the help of artificial aids) when something happened and, I’m stunned, breathless, excited and emotional.

The reason for this exhilaration; Crosby, Stills and Nash at Glastonbury 2009! Wow, what can I say, really I’m all shaken and stirred; I doubt if they’ve ever played a better set; blissful harmonies, smiling rhythms, steely leads and an overall spine-tingling, tear tickling (and stirring), celebration of what it means to be alive.

Yep, you’ve guessed it; I was impressed!

Thanks to BBC4 – I was there.

COMMON or GARDEN

Attaining Full Credentials

Last night, for the first time in many weeks, I experienced that sudden exhaustion whereby my aimlessly wilful lower limbs directed me, albeit falteringly, to the house’s upper floor in search of a bed. Object achieved, there came the inevitable collapse onto the nocturnal furniture. Just as night follows day, my body required the assistance of my beloved to carry out the task of its disrobing.

Some thirteen hours later I emerged from the soundest sleep experienced for months, or possibly even years. You might assume that, after this rest, I would be able to face the new day feeling totally refreshed; of course you’d be wrong. I don’t know if you’ve ever had the sense of your body being lined, internally, by a coarse felt sheet which has been (and still is being) subjected to a thumping hollow bruising affect! It’s my duty to inform you that it’s most unpleasant and, you have my sympathy if it falls within the range of your experience!

Anyway, unpleasantries out of the way, I can ignore other familiar ailments and move on to recent more positive experiences / activities. Having replaced a right angled absence on our front fence with a partial small pallet presence, I was able to utilize the base of this ‘new’ fence section as a mini-planter wherein I’ve placed a couple of small ivy plants. Further horticultural endeavours have been centred on the garden at the rear of the house, paying particular attention to the wildlife friendly arena. It’s most rewarding to view the results of previous years’ efforts which are gradually coming to fruition!

Monday of this week saw the celebration of my 65^th birthday, a special milestone as I am now a fully fledged pensioner! At lunchtime ma belle Helen and myself had a light lunch at a newly established local crêperie, Helen partaking of a goats cheese variety whilst I settled for the smoked salmon. As it’s a new venture, the accompanying drinks were free of charge, something most welcome in these financially straitened times!

From 7.00pm onwards, friends of ours called round chez nous, as and when convenient to themselves to partake of a birthday drink and toast the venerable birthday boy. As I’m not much for parties, and especially those of a more formal variety, this arrangement proved ideal. Having been incapable of much socializing, in recent years, it proved most enjoyable to play the (occasionally) sociable host. Although I have lost contact with several of my friends (those who failed to understand my health problems) since becoming an ME sufferer, it was great to know that I’m not totally forgotten! It’s my pleasure to report that a good time was had by all. Snacks and nibbles remaining from this event have made an interesting addition to our more routine diet, and of course we’ve had to make ourselves quaff the remaining wine from sundry open bottles.

The week has quite simply flown by as my beloved had taken the week off from work; time spent with ma belle amoureuse is always a pleasure, it’s remarkable to have a life so blessed!

Inquiry into vested interests - M.E. related

We the undersigned petition the Prime Minister to take up Gibson Inquiry into M.E. recommendation of a Public Inquiry into vested interests.

Please click on the link and sign this petition, it only takes a couple of seconds, - We are fighting to have our illness recognised.

http://petitions.number10.gov.uk/MEInquiry/#detail

The All Party Parliamentary Group's Gibson Inquiry into ME in 2006 came to the conclusion that it was highly inappropriate for psychiatrists such as Simon Wessely and Peter White et al to act as advisor's on illnesses like ME CFS for the Government and the DWP while working as consultants for the medical insurance industry for companies such as UNUM Provident. The insurance industry have a clear vested interest in classifying such illnesses as psychiatric conditions (despite the WHO classification of ME as a neurological condition ICD 10 G93.3) since they have to pay out less on policies.
The recommendations of the Gibson Inquiry called for an appropriate standards body to be set up to investigate these clear and alarming vested interests. This recommendation seems to have disappeared in a puff of smoke?

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

We the undersigned petition the Prime Minister to take up Gibson Inquiry into M.E. recommendation of a Public Inquiry into vested interests.

http://petitions.number10.gov.uk/MEInquiry/#detail

REMPEMREL

rempemrel - watercolour - Malcolm Evison 2009

After a bit of a struggle, I think that this painting is now finished - it's always difficult to know, especially so with the subject matter of this particular piece. It's an attempt to reflect an all too familiar ME-CFS pattern of remission, post-exertional malaise and relapse (hence the rempemrel title). At the same time I wanted the work to be affirmative - after all it's my life and I live with this rollercoaster pattern!

This posting also appears on Mal's Picturebox