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!