Eyewitness - Timeline - Headchange

This post also appears on Mal's Murmurings :

Eyewitness – Timeline – Headchange

150116 –  15.50hrs Attended Boots Optician for a (routine) eye test, reassuringly thorough, and made to feel at ease by optometrist, optician and all staff.

190116 Told to stop taking amitriptyline, usually taken at night, and sertraline, usually taken AM, with immediate effect. This was to be replaced immediately with trazodone, to be taken at night. When reading, as the pack advised, the enclosed Patient Information Leaflet it advised that one should not take trazodone if they have taken amitiptyline in the preceding fortnight!

As doctors, at surgery, were not forthcoming with a response to my concern, I quit amitrip and sertr. cold turkey, without taking the disputed new medication!

More details of these events can be found on my blog posts of 19, 29 and 25 January.

250116 Went to collect new spectacles from opticians – whilst en route to the opticians a most disconcerting sudden onset of a problem with my left eye occurred, A large floater, in the form of a black ring pirouetted through a full 360 degrees, dancing about and intermittently shooting at supersonic speed to a position several feet beyond my right side. My arms felt impelled to reach out to grasp this illusory element.

A few tests were carried out by the staff at the opticians but eye health seemed pretty good. I duly tried out and collevted the new spectacles.

020216 – took first dose of trazodone @22.20hrs

050216 – 12.30hrs fwd. Dramatically sudden decrease of vision occurred in left eye, an intensifying blurry veil stopping just short of total blindness, and a deep throbbing pain behind and surrounding the eye socket. When my beloved arrived home about 14.40hrs she immediately saw the need to drive me to the opticians pronto.

Both the opticians and optometrist carried out further thorough tests and scans, noticing a marked deterioration in my vision compared to my prescription of 15 January. The scans didn't reveal any damage or tears but, they made an appointment for me at Harrogate District Hospital Eye Clinic for 12.00 noon the next day.

By 23.00 hours my vision had improved significantly.

060216 – 12.00hrs attended Eye Clinic. Further tests and scans were performed before I went in to see the clinic's Consultant. After further tests, whilst I attempted to describe the experience, she gave a diagnosis of 'ocular migraine',(although typical episodes tend to disperse much more quickly than was the case for me!)

I subsequently discovered that anitriptylene has (not infrequently) been prescribed as a preventative for ocular migraine!

Perhaps if I'd remained on amitriptyline the ocular migraine would have been postponed. Alternatively, these events may have occurred nuch sooner had I never been prescribed the drug (to assist with night pain alongside tramadol)!

080216 – A severe overwhlming headache, cheek ache, eye ache persisted for much of the day, accompanied by giddiness and nausea.

Every day since commencing with trazodone(on 2 February) I've emerged into the day with a throbbing headache and in a stateveering towards total collapse – accompanied by a grey pallor.


++++++++++++++

PS after posting this blog, a friend, with considerable medical experience, was chatting with me on Skype - he happened to mention that 'blurred vision' was a known side effect of trazadone! He was also well aware of contra-indication re amitiptyline / trazodone.

Of Beatification - Massacre of the Innocents - and the Beeb

OF BEATIFICATION, MASSACRE of the INNOCENTS, and the BEEB

It cannot have escaped the attention of even the most casual listener to BBC Radio 2, in the course of the last 24 hours, that a process of beatification is well under way for Pudsey’s primary accomplice. Of course the way has to be carefully prepared for subsequent canonisation of the noble knight.

Every news bulletin reader, continuity announcer and programme presenter was contractually obliged to “Go Tel(l) it on the Mountain” that Terry’s woes have gone.

Each pre-recorded programme, broadcast yesterday, was preceded by a pre-emptive apology that their presenter, and production team, lacked foreknowledge of Sir Terry’s passing before the shows’ due transmission date.

Meanwhile, the slaughter of innocents (some of which is ejaculatorily supported by our own dear government ministers) continues unabated around the globe whilst, at home, the Tories persecution of society’s most vulnerable old, young, poor, sick and/or disabled, alongside their dismantling of the NHS, continues apace, only to pass unacknowledged by the Beeb’s department of navel-gazing news and current affairs.

RIP Sir Terry. RIP the welfare state’s compassion and humanitarian concern. RIP decency at the heart of Government. 

General Practitioners may be Bad for one’s emotional Health

General Practitioners may be Bad for one’s emotional Health!

Seven days ago my Patient Information Leaflet saga began and, on this the seventh day, I received an early morning telephonic communication from the medical practice. Once again it was a receptionist making the call and she duly read out a (quite lengthy) statement from the prescribing doctor declaring his infallibility. It actually stated that he was well aware of side-effect and contra-indications but as he was prescribing a very low dose (100mg when the capsules are made in only 50 & 100mg); I would have considered 50mg to be very low dose in this instance.

My primary concern was the positive declaration that one should not take this medication if they’ve taken the specific medication I was on within the last two weeks. Of course being some sort of God the GP obviously didn’t feel it was worthwhile to deal with this specific.

Of course it was said that I could arrange an appointment with said doctor to discuss the issue but, what’s the point of consulting a GP who offhandedly (as witnessed by my wife who sat in on the appointment) ignores anything the patient says if it doesn’t suit his agenda? In any case it always takes ages to get an appointment. Although I had been quite prepared to start taking the new medication two weeks after having taken the last dose of the previously prescribed ones, this wasn’t presented as an option so I now have misgivings about taking it at all, which as the receptionist says “that’s the patient’s prerogative”.

I can only assume that patients are supposed to ignore Patient Information leaflets, as they may prove challenging to the GPs’ omniscience. 

MEDICATIONS Mess Up - Contra-indications

The two previous posts refer to this same topic! I suppose this is simply an update.

________________________________________________________________________

MEDICATIONS: Current state of play. I've now stopped taking both amitriptyline and sertraline ('cold turkey' as followed GP's advice to return unused ones to pharmacy - that was before I'd read the leaflet with the Trazadone that he recommended I started that evening) but am not taking Trazodone.

My beloved OH visited my GP's surgery to point out the information warning me not to take the Trazadone; the receptionist took the details saying the duty doctor would contact me this afternoon. Mid-afternoon one of the practice receptionists called me to say that the duty doctor said it had to be dealt with by the GP I saw yesterday but he won't be there until next Monday. It seems obvious to me that contracted GPs are afraid to challenge even wrong decisions by a practice partner.

A Further Post Script to previous post

This post is a further postscript to 

FRUSTRATIONS of a Medical and Medicinal Kind

 as someone who has been taking amitriptyline at night for more than a couple of years it's a good job that I thoroughly read the Patient Information Leaflet! To replace amitriptyline and a low dose of sertraline my GP has prescribed a drug (which I'm supposed to start immediately) which explicitly states that one "should not take Trazodone if I've taken amitriptylene within the last two weeks".

It also states special care should be taken if "your age is above 65years, as you may be more prone to side effects" and "take special care if you suffer from conditions like abdominal pain, muscle weakness, mental confusion"

I am 71yrs 7months of age, and suffer intermittently with abdominal pains and muscle weakness as part of my general state of unwell-being (ME). Even mental confusion was present not long after I first succumbed to ME at the end of 2003.

FRUSTRATIONS of a Medical and Medicinal Kind

This post also appears on 'Mal's Murmurings' under the title 'CONSULTATION FRUSTRATION'

___________________________________

It shouldn’t really be like this; anger and despair turn out to be the result of a visit to the GP. Having finally yielded to my beloved’s advice, I got around to arranging an appointment with my local doctors practice. My reluctance to make this appointment is the knowledge that they’re only equipped, or allowed the time, to deal with a specific singular ailment, not a complex multiplicity or whole people.

First annoyance came when he (being the doctor) stated that the medications I was on had a tendency to conflict / counteract each other to some degree. Considering the length of time I’ve been on this assortment of potentially self-conflicting cocktails, I begin to wonder why the practice had been oblivious to this over the course of the past couple of years.

When conflicting advice, between medics in the same practice, as to whether certain meds should be used pre-emptively or only when absolutely necessary, adds a further quandary for the patient as to the efficacy of using the practice at all.

Anyway, a couple of the prescribed medications are no longer to be used; they are replaced by a single different medication. Worrying for me is the following statement, on the Patient Information leaflet:

 take special care if you:

suffer from conditions like abdominal pain, muscle weakness, mental confusion.

[there are times – regularly for the first two, occasional for the latter - when I can tick all those boxes]

The doctor further suggested that I should use co-codamol instead of tramadol, even though I’d had to stop using co-codamol, because of the effect it was having on various abdominal organs, a few years back. Tramadol, thankfully, remains on my prescription.

Next came the little prep talk suggesting Graded Exercise Therapy would help, even performing the same limited exercise on ‘bad’ as well as ‘good’ days. Obviously he has no understanding of what a PwME’s (even moderately so) ‘bad’ day is like. I explained that even the visit to the opticians, a limited amount of exercise involved, was sufficient to cause payback, his response was that obviously was too much exertion!

Well, it seems that I’ll have to stick with my own pacing regimen which essentially curtails any exertion on bad days and, ensuring that I always have some spoons in reserve when I exercise on good days.

The preceding events, at least their physical & mental toll, necessitate a temporary postponement of my visit to hospital for further blood tests

I’m quite proud of myself for refraining from the use of expletives during this little rant; expletives remain in my personal domestic space for the time being

_________________________________

Malcolm Evison doctor even told me that there's no connection between overload of pain stimuli and the corresponding nausea that I experience !!!

GOOD TIMES - BAD TIMES - Strangely NORMAL TIMES

Wrists in strong supports, left hand clasped tightly in armpit by right upper arm, right hand grasping left shoulder, upper left arm clasped tightly to side, and I want to scream. The nagging aching pain and discomfort little eased by 100mg of tramadol swallowed a couple of hours ago.

Everything felt fine when I decided to move from reclining to upright posture, but then just switching on laptop and tapping a few keys was sufficient to bring back the heavily aching nausea-inducing pain in the upper arms; the sensation not too dissimilar to a state of total exhaustion when one is prohibited from rest or sleep.

When lying down a throbbing ache envelops my knees; bending knees to make a tent under my shrouding fleece temporarily alleviates the gnawing knee pain. Next it’s the toes that are the problem, a sudden burning sensation in lower digits all too swiftly feels as if my skin is being grated by the restraining pressure of what are usually quite normal socks. This latter item swiftly becomes an instrument of torture and, their removal does little to relieve the sting.

It’s beginning to feel like some sort of punishment as atonement for having two reasonably good days. On Friday I finally managed to visit the opticians, first time I’ve managed that since 2003, previous attempts having been thwarted by sensory overload and/or panic attacks. I t really felt like quite an achievement to have undergone a range of tests by both optometrist and optician. The optometrist was genuinely interested to learn a little about ME (and my denouncing of the wastebin CFS diagnoses) and really put me at ease.

Fired up by this amazing achievement, next day I decided to attend to one of my problem PC’s that I hadn’t touched since September. No amount of online research (and subsequent application) resolved the issues that had thwarted my efforts last year. There was nothing for it other than fresh installation of Win 7 and countless updates to be applied.

By mid to late evening I was quite shatteredly exhausted but, having go to bed sleep proved extremely elusive. Illusory sleep turned out to be the lesser nocturnal oppression. Wrists, elbows, lymph nodes, and lower digits screamed out for attention. Tubular bandages over elbows and much of the arms, elasticated metal spined wrist supports offered little in the way of pain and discomfort relief and, the burning flayed skin of the toes screamed out in accompaniment to my expletive laden vocalising. An application of moisturiser to feet and toes proffered temporary alleviation but, I’m not sure whether it was the emollient or the massaging effect of its application that provided this relief. This procedure was repeated several times during the course of the next couple of hours.

 By 11.19 this morning I reluctantly emerged from the duvet lair only marginally less exhausted than the previous late evening. What of today? You may well ask! The first paragraph describes some of my afternoon.

Season's Greetings

Patient's Progress

Emotional resilience remains with me, apart from minor daytime lapses and nocturnal responses to my own unique brand of peripheral neuropathy. These nocturnal skin flaying, burning, tingling, claustrophobic sensations seem to afflict my whole psychosomatic being with expletive laden outbursts and foot stomps around the bedroom whilst my beloved sleeps contentedly.

Perhaps I should explain that the symptoms afflicting my whole being are, superficially at least, only being felt on the upper parts of my toes. The claustrophobia represents these pitiful digits' need to escape the confines of any bed-linen and / or duvet! There just doesn’t seem to be any chance of finding a comfortable position for the lower limbs, in order to settle down to sleep. Sundry intermittent discomforts play havoc with the bodies need for rest yet, quite strangely, by the time my beloved is waking from her slumbers I’m able to relax sufficiently to enter the Land of Nod!

Sudden onset daytime bouts of exhaustion are currently in the ascendant, frequently accompanied by wrist, elbow and knee pains demanding application of sundry splints and supports, which seem to simultaneously ease the nausea inducing tenderness emanating from axillary lymph nodes. Painkillers are then required as, once again, I’ve failed to divine that a pre-emptive dose would have been in order!

Ma belle frequently feels frustrated, and even guilty, by her inability to alleviate the intense discomfort that I quite frequently experience; I know that my suffering would be far greater without the experience of love and care for each other through which I am truly blessed.

#ME – There and Back Again!

Sometimes it seems that even that moderately low plateau of stamina, is a level too high to return to. At present, a dispiriting pain and ache level of exhaustion seems intent upon taking permanent residence in my limbs and torso; at times its tentacles seem to stretch discomfortingly into head and psyche as well!

There’s always a price to be paid for even a modest additional expenditure of physical and emotional stamina, even when that expenditure itself seemed beneficial. Recuperation from payback seems to be tidal in nature; just when one thinks that the energy tide is in it swiftly ebbs away.

On Saturday 17^th some long standing friends made their way across the Pennines to Harrogate. Upon their arrival at the Cedar Court Hotel they ‘phoned to invite us over for beaucoup de catch up conversation and an early evening meal. The three to four hours spent with them passed in what seemed like one hour tops! Stamina resources didn’t seem to be a problem at all, I simply basked in the socializing experience.

Next afternoon, our friends joined us chez nous, for further chats and an early evening meal’ Fortunately, I’d already prepared a curry, earlier on the Saturday, so there wasn’t too much effort involved in dinner preparation.

Once again the few hours together seemed to pass at supersonic speed. For a while I felt as if my stamina was heading back to pre-illness levels and, I felt quite on form to co-host our monthly Bible Study group, chez nous, on the Monday afternoon. The study and fellowship proved rewarding as usual.

On Tuesday 19^th a degree of payback kicked in. A shattered painful exhaustion, swiftly metamorphosed from simple over-tiredness,to a sharp burning sensation on the uppers of my feet and simultaneous excruciating pains in my upper limbs, Meantime my torso felt crushed and bloated. That’s just a fragment of the discomforting regimen of the day. Wrist, elbow, and back supports were intermittently required, alongside a frequent recourse to tramadol.

By the Wednesday morning I felt as if I was being gradually restored to normality, only to regress on subsequent days. At least I’m now having less recourse to painkillers.

By the beginning of this week I feel as if emotional resilience has returned; all that remains are my more regular aches, pains, and sudden onset bouts of exhaustion.

 As I look out on blue skies, all’s well with the world.

Dis-Arming Dis-Ease

Being tickled so hard that hysterical laughter turns into a painful scream, I wonder if you know that feeling, because that’s how I feel now except without the laughter! Suddenly the newspaper felt too heavy, or at least too awkward to hold; the wrists succumb to a pounding tympanic throb, so I apply the necessary strappings. Next the inevitable discomfort in the armpits, suddenly the skin feels at least two sizes too small for the torso it embraces; that aching laughter sensation, referred to earlier, holds both inner upper arms in thrall. I try, with only a modicum of success, to dampen the nausea response by clasping the upper arms almost tourniquet tight against my body.

To an onlooker it must seem as if I’ve been suddenly shocked into a     distorted catatonic state.  

It takes some time before I pluck up courage to extend my forearms away from the upper-arm locked torso. A sigh of relief murmurs forth, as I release myself from this temporary stasis; it’s almost as if I’d been holding my breath alongside clasping the upper arms to torso.

It’s proving difficult to catch up on some much needed rest, last night had been one of intense dis-ease best summed up by my posting on facebook at 3.30AM:

Once I stop feeling
my skin's being flayed
whilst discomfort dances
leadenly

over joints
and muscles
then

I may get
some much needed
sleep

Night night folks!

I’m afraid the “Night night folks” was a little too optimistic. I finally managed a little, scarcely refreshing, shut-eye from around 6.00AM.

What goes around ...

First, (or at least at a randomly selected point on the arc of unwellness), the eyelids struggle against the gravitational pull, an overwhelming ache through sinuses and tingling cheeks; I finally admit my weakness and go to lie down on the sofa. By this time I acknowledge a need for a couple of strong pain-killers, as well as wrist and palm supports. The dull throbbing ache in the wrist seems to transmit a negative signal to the armpits and axillary lymph nodes.

Next, an extremely discomforting, nausea inducing, hollow ache begins; it feels as if it floats on a leaden bed which wraps around the upper inner arms. I squirm and mutter distraught moans, squeeze upper arms tightly against my torso. Within a few minutes the squirming becomes even more intolerable; what next?

Turn onto my left side, interlock my fingers, lift the heel of the right hand into the other hands palm; back of the right hand bonily supports my left cheek. Further agitated juxtapositions of hands, arms, torso, perform an erratic ritualistic dance. Eventually the nausea eases, tenderness of lymph nodes, and discomforted wrists, decide to keep me company a little while longer.

For now things are easier, just the usual niggles; it would be nice to think it won’t happen again but, unfortunately, it’s never too far away.

BBC CONSULTATION - Government plans to rip out the heart of the BBC

Have a look at this: https://secure.38degrees.org.uk/bbc-consultation-thankyou

It just took me just a few minutes to fill in the official survey about the future of the BBC.

Government plans to rip out the heart of the BBC are taking shape. Imagine a BBC where newsnight is riddled with adverts. Or a BBC so underfunded that independent news becomes a thing of the past and the airwaves are dominated by Rupert Murdoch’s media. This is what the Government wants - we need to stop them.

Just before the summer break, the government snuck out a ‘public consultation’ on the future of the BBC. It’s full of gobbledegook questions - they were obviously hoping that nobody would respond! So the 38 Degrees staff team has ‘translated’ the questions into plain English, and the time’s come to make sure they hear our voices.

Without our voices, the government can claim that people don’t care about the future of the BBC, opening the doors to Murdoch. So can you add your voice and stand up for the BBC? Just click this link to fill out the survey now:
https://secure.38degrees.org.uk/bbc-consultation-thankyou

I’ve included my responses to the survey questions below:

+++++++++++++++++++++++++++++++++++++++++++++++

How well is the BBC serving its national and international audiences?

The BBC, despite the shortfall in its income (and costs for world service being wrongly charged to them instead of the government), provides a prestigious and excellent service. I regularly listen to Radio 2, 3, 4, 4extra and 6 music, and the majority of my TV viewing is on BBC One, Two, Four and occasionally BBC Three. The catch-up and other i-player functions are proving indispensable. Natural History is a particular strength.

Which elements of universality are most important for the BBC?

Drama, Documentaries and entertainment provided by the BBC are generally of a very high standard and must be maintained alongside their news and current affairs coverage. Sport, which is nowadays very commercialized, would be best handed over to the commercial channels.

Is the BBC’s content sufficiently high quality and distinctive from that of other broadcasters? What could improve it?

Improvement is difficult to contemplate as the BBC's content generally stands head & shoulders above other media providers.

Where does the evidence suggest the BBC has a positive or negative wider impact on the market?

The BBC has always been a provider of quality programmes, whilst many of the commercial providers seem to revel in catering to the lowest denominator.

Is the expansion of the BBC’s services justified in the context of increased choice for audiences? Is the BBC crowding out commercial competition and, if so, is this justified?

I value the range of services provided by the BBC and, I consider that any well managed commercial organization has only itself to blame if it cannot stand up to the competition! Only the weak fear competition!

Has the BBC been doing enough to deliver value for money? How could it go further?

Excellent value for money. It could however stop paying exorbitant salaries / fees to presenters such as Wogan, Evans, and the unlamented Clarkson.

How should we pay for the BBC and how should the licence fee be modernised?

 

I would be happy to pay more for the current arrangement but with welfare benefits paid (toward the cost) for the less well off

hazed out days

Just a vague dull irritating ache throughout torso and limbs, feeling as if a detached “I” was looking on pityingly. For the past couple of days this seems to have been my exhaustingly shattered state of being, an exhaustion of mind and body, almost as if it’s payback for forcing myself out of bed after a mere 11 hours of intermittent unrefreshing sleep.

 I expect, and reluctantly accept, those cloying nausea inducing aches and pains, seemingly emanating from cervical and axillary lymph nodes. Familiarity has also enabled me to accept the more erratically intermittent acute pains in joints and muscles, which pain-killers can control to some degree.  Even the gnawing, discomforting, symptoms of IBS never seem quite as disconcerting as this seepage of hollow ache which seemed to embrace both psyche and soma.

Today, I at least feel awake and, I’ve managed to prepare a kedgeree for our main meal as well as a gently peppered chicken, peppers and mushroom casserole for Sunday and Monday’s lunch time. My halo has been polished once more. I’ve got to admit though that the slightly warmer weather does me no favours in terms of stamina; I only wish its enervating effect could be transformed into true relaxation, serving to ensure some long needed refreshing sleep.

At least I’ve managed in recent weeks to enjoy BBC4’s excellent coverage of Cardiff Singer of the Year, and by way of contrast, mentally grooving to ‘Jungle’ and Mark Ronson, amongst others, transmitted to our sitting room courtesy of the BBC. The sound of each event has been much enhanced via the SoundStage (a sound bar with built in sub-woofer) bought by my beloved for my recent 71^st birthday.

Akala on Britain's inherent Racism

Having just watched and enjoyed  Frankie Boyle's Election Autopsy on BBC iPlayer, I thought I should share Akala's contribution to the programme:

From Storm to Calm

That all too familiar nausea producing tenderness of lymph nodes, particularly axillary & cervical, has returned; the accompanying discomfort frequently seems to precede a more acutely throbbing pain in the upper arm.

Wrist splints and supports, tubular bandages, elbow supports and tramadol are very much in demand at the moment. Omeprazole, mebeverine, and mometasone fuorate seem currently (but hopefully only temporarily) rather less effective, in tackling reflux, IBS, diverticular problems, and rhinitis.

Quite frequently, a variant (as opposed to my more regular nocturnal tradition) of restless leg syndrome seems to take control in the hours out of bed. As I arise from a seated posture, it feels as if I have to make a conscious effort to issue the necessary commands to my lower limbs, to ensure they travel in the intended direction, rather than making a random displacement / detour,  and assuring them that they’re quite capable of supporting my torso.as I move across the room.

Even quite minimal exertion seems to take a disproportionate toll on my shattered constitution. I don’t think I’ve become more lax in ‘pacing’, but rather that my stamina reserves have diminished somewhat, over the years, from their already low plateau.

Apart from the foregoing minutiae of my current state of unhealth, I still feel rather blessed that I have a roof over my head, food in the larder, and other home comforts, but, the real icing on the cake is the love that I share with ma belle Helen. Love is such an amazing thing, a symbol of transcendence in a world dominated by the forces of greed.

To life and love, I raise my glass.

jet powered fluttering

I love these bright sunshiny Spring days; I was going to say mornings but, by the time I have manoeuvred myself from the divan, and into daytime apparel, ante-meridian is already veering toward the post component of the day. At this time of the year I’ve at least got a few more daylight hours to appreciate, even when the body achingly summons me to an afternoon nap.

What I don’t like about these bright days is the omnipresent temptation to do a little pottering about in the garden. Don’t get me wrong, I loved gardening when it didn’t have a payback clause attached, whereas now it’s far too easy to forget the limited number of spoons available.

When I succumb to the garden’s lure it so easily leads me to forget about “pacing”. My beloved is always good at reminding me to slow down, or stop, these times of physical endeavour, especially when I’m enjoying the change from my otherwise sedentary lifestyle. Actually, much of the time, the word sludge seems more appropriate than sedentary to express how this mode of being feels. Yesterday a short time spent mowing the lawn, albeit using an electric mower, seemed to have used up most of my 24 hour stamina supply.  

It’s always wonderful to hear the buzzing hum of the bees, both bumble and honey, as I walk past the heather laden rockery towards the wildlife friendly reserve at the far end of the garden. Primroses and cowslips are thriving and the nettles are springing back to life; the chatter, piped and fluted songs, of our avian visitors make an idyllic background as I move into reclining mode in the summerhouse.

 Even the fluttering butterflies seem like jet propelled aircraft in comparison to my enforced lethargy.

just so story - zambalouked

absolutely zambalouked - that's it - zambalouked; there's no other word for it, it's indescribable without its forbears, and the whole interminable history of signs and symbols encountered en route.

First we had that dance routine, it starts with the knees this time. A dull throbbing ache vibrates through shins and sets the feet in motion. Next it's the wrists that ache, a slow burning fuse that sets the heavy upper limbs in discomforted motion, and then the nausea begins.

Elbows insist the arms must stretch, release the terpsichoreal spasms that shudder down from the armpits. Turn onto belly, cross arms behind the pillow, stretch legs and hook toes over the mattress end to stop their flailing burn.

*******

Do you know that, this time, I thought I'd gotten away with it.

Nice bright weather coaxed me out of my cocoon, just a little light weeding here, tack down some mineral felt there. Can't have been more than a couple of hours exertion spread across two days.

Then there was the modest change of 27litres of water from the 180litre aquarium, 3 buckets full either way, and that's my exercise!

I wallowed in that grand illusion; this time no payback. Guess what ...

*******

A couple of days later the nocturnal dance followed by this achingly shattered, confused emptiness, a totally zambalouked experience. Absolutely zambalouked, that's all I've got to say! 

Entranced by the strangest zambalouk.

Easter Greetings

Of genuine woes and fraudulent transactions

Today provides one of those unusual mornings, at only 11.45 I feel almost awake; a rare instance indeed! Just over a week ago I intended to write a posting, more a catharsis for me than a word for others, but an intolerable lethargy weighed far too heavily. My scribbling that day went as follows :

“And wimpishness knows no bounds, the tears flow freely, the sinuses discharge an uninfected load as earth’s rotation slows right down A flood of fear and selfishness combines

A flood of fear

And selfishness

Knows no bounds –

The tears flow freely

And sinuses discharge

An uninfected stream

Of hopelessness …”

My brain seemed blocked; no words would flow until, some twenty-four hours later, the above emotion transmogrified into the following doggerel:

                                            Dog Errol

                                          It never pours

but when

there’s more

to follow.

Rain never follows

an unending drought.

If once a mouse

should catch a cat

the fox would say

I smell a rat

Whereas earlier in the year, despite all too familiar aches, pains, and wooly confusion, I managed to remain quite upbeat, by early March my reserves of emotional and physical stamina had fallen from their quite low plateau. Even the most modest exertion seemed to wipe me out. It was as if I had to make an exhausting conscious effort to persuade my legs to move in the right direction, as I ventured out into the hallway; this would occasionally be followed by a strenuous mental effort to remember why I’d headed there in the first place.

Earlier today it seemed as if the sun would make an appearance but, as I turn back towards the window, hailstones are flailing down from the heavens, their rebound, as they leave the ground, makes mockery of my prevailing inertia.

No sooner had I jotted down the previous paragraph than the sun, in full glory, burst through the residual cloud cover as grey skies turned to blue. The swiftness of this transition would be hard to believe were it not experienced first hand by one’s own senses. So, you may add, “your senses are working, even if much else of your corporeal being seems to be giving up on you. Why don’t you stop moaning?” the latter question I’ve frequently asked myself but, it’s far too easy to succumb to more negative attitudes when your feeling several degrees below an iffy par.

*********

A gum infection, and accompanying toothache, really set me back and, as is its wont, the worst flare-up occurred on a Friday night and the dentist doesn’t work at weekends. Strangely, the pain seemed to emanate from beneath a crown; intellectually this made little sense as I knew that tooth had been root-filled many moons ago. The worst of the pain then presented itself under a wisdom tooth; when I had an emergency appointment with my dentist she noted that I nearly went through the ceiling when she tapped the offending tooth. She duly prescribed a course of antibiotics to combat the infection, halfway through which the pain seemed to have magnified, and with my somewhat iffy immune system sundry familiar ME symptoms returned to bite me, affecting my balance, brain fog, aching muscles, chronic IBS and diverticular disease symptoms seemed to think it was carnival time; they rejoiced as I slid further downhill.

I was feeling so dreadful that when I realized my beloved was going to visit her brother, and would be away overnight, the floods of tears mentioned at the beginning came into play. My only utterance, through my wimpish blubbering, to ma belle was that I was afraid that I was going to die alone.

Matters weren’t helped when an early morning ‘phone call wakened me from my fitful slumbers on the morning of ma belle’s departure. The call was from a credit card company suspecting there may have been a “fraudulent use” of my credit card and, I must contact them on an 0845 premium number. I went immediately to saynoto0870.com where I found an alternative number to contact card services. Just as well that I used a free number as I was talking to (or being talked at) the bank for 40 minutes when palpitations and breathlessness took over. My beloved fortunately had not yet set off, as she had to take over the conversation from me.

The annoying oiks on the banks end of the phone line endlessly repeated the same questions re a gambling website that I’d never heard of and had I made a £500 payment to that site on that morning. Although they acted on the basis that a fraud had been committed, somehow this payment had been accepted and would appear on my next statement. They then explained that in a fortnight they would be sending me a legal letter which I would have to sign to say I had not made this payment. The attitude of the people I spoke to left much to be desired, especially when dealing with people who have a chronic debilitating health condition. I was definitely made to feel that I was a prisoner in the dock being grilled by a particularly abrasive prosecution counsel.

The card was only renewed earlier this month and has never left the four walls wherein I live, breathe and have most of my being! It had only been used a couple of times online at companies with whom I have had regular secure transaction completed via a “verified by” security check so, one can only surmise that there is somebody either at the bank or one of these companies who has filched my card details.

Sorry for such a sustained moan but, it only serves to illustrate my roller-coaster ride.

 

                                          

the wonder of chilled silver

Two new poems CHILLED SILVER and WONDERMENT have been posted on my Mal's Factory poetry & prose poem blog.

"Let Them Freeze!" – Politicians in Frozen the Musical

HelMal's Refuge is expanding

A new web album entitled NEW ABSTRACT SKETCHES has been added to our HelMal's Refuge website

Revivified on Mal's Factory

I've just posted a NEW poem on Mal's Factory - 'The Yo-Yo Man' a rough draft of which had lain dormant on my hard-drive since 2006

what's in a day

It seems, and logically must be, impossible to know what’s going to happen one day to the next. Whenever we arrange any kind of appointment it’s usually made in good faith but, circumstances can so often thwart the noblest intention. I’ve been feeling quite vulnerable, health-wise, with a recurrence of sudden onset sundry joint, muscle and lymph node pain.

It’s rather hard to describe how (what starts as) an acute breach of one’s pain threshold transforms itself into a prolonged groan and nausea inducing pulsating bruised sensation.  Occasionally the application of wrist, knee, elbow and shoulder supports provides temporary relief but at other times they have to be accompanied by taking a couple of tramadol. For a few days in the past week, with the aid of a little preventative pain-killer consumption, I seemed relatively free of the above aches and  discomfort; even my IBS symptoms were in temporary abeyance.

That should have seemed too good to last but, I so enjoyed the welcome break that, I was rather shocked when the above symptoms alongside others returned with a vengeance. A chest crushing response to sudden unexpected sounds, IBS, post-nasal drip, sore throat, loss of appetite and sudden pallor overwhelmed me yesterday, and I became quite frightened. My body imposed a regime of rest on me; I kept dozing off intermittently throughout the day even though I’d had my normal twelve plus hours of bed-rest, with intermittent but not necessarily refreshing sleep, as prelude to this ultra-discomforted day.

At present it seems as if my sundry prescribed medications are failing in their duty, reflux, post-nasal drip, IBS are all nagging me into acute awareness of their presence. I still am able to count my blessings, welcoming each new day to bask in the love of ma belle amoureuse, having a roof over my head, water on tap, essential heating,  and food in the larder. My heart goes out to all those less fortunate than myself.

*******

This post also appears on Mal's Murmurings

HAPPY NEW YEAR

Here’s Hoping that the NEW YEAR may become 

one in which

each Individual’s Need

is met 

(and Corporate Greed

is overcome!)

CHRISTMAS GREETINGS from Me to You

may it be a season of 

PEACE, HOPE, LOVE & JOY

Not So Smart TV

Our move into Smart TV land has been nothing if not eventful. It has always been our practice to record one or other programme when confronted by a clash of timings, or simply an inconvenient programme timing, but more recently connecting tablet or laptop PC via HDMI to catch up on missed programmes. 

More recently we started to think of a smart TV, although not many of them had the major terrestrial channels [BBC iPlayer, ITV player, 4 on Demand, Demand 5] on Catch-Up. Eventually we decided to audition the Panasonic Viera 32" Smart HDTV, which each of these services but, unfortunately the local Panasonic store was finding that model difficult to obtain. Meantime having viewed several tech reviews online it seemed that contrast and blacks weren't a strong point of this range.

Having initially been disappointed by the lack of local availability, and seen these reviews determined me to look elsewhere for a Smart TV. Samsung offered access to all the aforementioned catch up services as standard so we ordered one to be collected from our local Waitrose store on Saturday. The only minor difficulty was the assembly of the TV stand but setup of all programmes and wireless internet connection went without a hitch. Picture quality was sharply excellent on HD channels, with rich deep dark colours where black was truly black, and we felt happy with our purchase.

On Monday a blue logo appeared on the right hand (as viewed) top corner reading "Book Me" next to a green dot. Once it had appeared it remained on screen no matter what channel I switched too. A search online disclosed that this was an all too familiar problem with Samsung Smart TV's, the sign appearing alongside any of the sundry BBC trailers. They first seemed became aware of it around the time of Wimbledon (a good five months ago) and I discovered that some users had the problem resolved via 'Remote Support'. I duly obtained a PIN for this service only to discover that the support office, which I had to phone, was only open between 9.00am and 6.00pm, so I was too late on that evening.

Prior to this I had registered the purchase with Samsung, online, full rigmarole of name, age, full postal address, date of purchase, specific TV model etc; even though the set was covered by an extended guarantee+accidental damage cover from the retailer.

The following day, after listening to what seemed endless adverts for sundry domestic products, I managed to get through to the appropriate support person. On getting through, I was asked to repeat all the information re. purchase, home address and more as Samsung Support evidently have no access to Samsung Registrations - a promising start! When I quoted the current personal PIN, displayed on the set, I was informed that their remote server was down so, they'd have to talk me through a procedure for 'Factory Reset' which would sort out the problem. 

With the set in standby mode I had to press three buttons (Info, Menu, Mute or something like that) and then switch on the TV. Twice this exercise failed in bringing up a panel on the left side of the screen and just displayed the normal picture. Third attempt was successful and the panel, from which I had to select 'Options', appeared. Next I entered 'Factory Reset' and had to repeat the whole set-up procedure.

By this time my beloved took over the 'phone as I was getting really stressed (verging on a full-blown panic attack), and she was given a personal support reference number which would speed up the process in the event of further problems. 

Next day it seemed, at first, as if the problem was well and truly solved but the message did briefly flash up on two or three occasions but quickly disappeared. At lunchtime today the infamous "Book Me" logo re-appeared and stubbornly remained in situ, even when we changed channels. My darling OH decided to 'phone the support line again and quoted the personal reference number given, to speed up the process but, she was also asked name, full postal address, model of TV, when purchased etc. The person then suggested to input the same keys as we'd already applied two days earlier, which I'd fortunately written down in sequence, and ma belle quoted back at him. At this point he decided that it was a faulty set and we should return it to the retailer for refund or exchange.

Judging by the (apparently) common occurrence of this problem a refund seemed the obvious option as this rigmarole had exhausted both of us; at tea-time I disassembled the stand and repackaged the TV ready for return.Two further trips were made to the store as I realized, when setting up (once again) our old UnSmart HD ready Sony Bravia, that I'd still got the power cord for the Samsung. No sooner had my beloved set off with the power cord than I also discovered a smart card adapter and extended IR cable belonging to the offending not too smart Samsung product.

This evening, as I told a friend of these problems, the friend asked if it was a Samsung as their inlaws had a more expensive model pack up twice within about twelve months of purchase - a capacitor having blown on each occasion. At least I've forestalled such future problems.

CLOCKWATCHING

Strange how putting the clock back an hour can make one feel capable of regaining time; if only! To be honest though, it’s the very fleetingness of time that I’m still struggling to come to terms with.

As a child it feels as if the next summer holiday, Christmas Day, or even the weekend, can’t ever come soon enough. Confined to the schoolroom, the hours of each day hang leadenly as you watch real life going on at the other side of the window. Mind you this slower passage of time also provided greatly extended hours of play, leaving one exhausted long before the day was done.

These days, after a long night’s unrefreshing sleep and restlessness, that state of exhaustion seems to accompany almost any small task; perhaps it’s not really exhaustion but rather an aching void replacing that illusive space where stamina reserves should be accumulated.

When one’s sundry aches and pains are playing neurological havoc it’s easier to understand the lack of stamina but, this physically aching void doesn’t even seem to require these more tangible ailments. Mind you the IBS, diverticular disease, rhinitis etc; are always lurking just below the surface.

The lower my stamina reserves, the tetchier I become and, whatever reserves are there explode in bursts of angry expletives. I don’t deny that I’ve always had a bit of a temper, the outbursts often justifiable on socio-political grounds, but the frequency of expletives in my occasional outbursts seems to have grown exponentially. Anger stems from frustration, frustration from limitations on both physical and emotional stamina.The truly ridiculous thing is that these outbursts leave me feeling more drained.

Although these aching voids can sometimes feel like an eternal punishment, days (and even years) have passed by so swiftly, as if to emphasize the weight of spiritually / emotionally good days I must be having. Any day spent with my beloved is wonderfully worthwhile, even if I’m not always the best of company.

So little time, and so much I want or intend to do. I’ve put the clocks back but, sadly, I cannot put back time.

living moderately

Well hello again! I’m not sure whether its weeks or months since I last proffered a “proper” blog post and, I must admit that the prospect seems rather daunting. No excuses, there’ve been good times and bad times, rough days and smooth days, since my last full offering and my stamina reserves have been used on other pursuits.

Upturns are represented by my casting aside the walking stick on several occasions, managing a moderately brisk walk of several hundred yards, whilst still lamenting an inability to manage a few miles. Some people are never satisfied!

I still enjoy our garden, no matter what the season, albeit from a passive observational perspective; what would we do without the professional services of our friend Martyn? Although I sometimes pride myself on my pacing, I still find myself suffering the payback penalty when enthusiasm for a modest task leads to even a modicum of over-exertion.

The usual problem is recognizing the exertion that may be demanded to fulfil an apparently simple undemanding task. One such example was a recent successful attempt at re-potting a contorted hazel shrub. Initial preparation of the new container went smoothly but, once I’d placed the plant in situ, the task of infilling turned out to be the proverbial straw. Brain fog, an amplification of all my familiar sundry aches and pains (muscular, joints, lymph nodes, abdominal spasms etc) and an inability to control my legs as I headed back to the house – a kind of conscious restless leg syndrome! The next couple of days passed in an achingly painful, mentally hazy, sense of being; it took a little more time before a tingling sensation of being trapped in an undersized skin receded.

It’s a few weeks now since my beloved retired from her salaried employment, at the doctors surgery, so I’m really enjoying more of her company. Mind you, she’s still meaningfully occupied as a local preacher, an assistant on computers at the Acorn Centre, Fair Trade issues and involvement with the local Labour Party.

 Until recently it has been somewhat difficult to persuade her to take much needed recuperative rest. Having always pushed myself, working and playing hard, prior (and probably causally related) to succumbing to ME, I do worry that some people ill-advisedly over exert themselves rather than listening to their bodies and ensuring they always have some stamina in reserve.

                                                            ++++++++++++++++++++

Encountering ME - a selection of poems, reflecting my experience of living with moderate ME can be read online or available as a free download from Scribd.

Mal’s ME Jottings – a selection of blog posts are also available on Scribd – read online or available as a free download.

  

boys and their toys

I posted a couple of variant sketches, made using the basic TegraDraw programme on TegraNote 7" tablet, on my  Mal's Picturebox blog. Further sketches made using my 70th birthday toy can be on my Facebook artist page  in album Tegra Sketches and here's another to be going on with :

viewing the feeders

just watching the birds in our garden from the summerhouse

new snaps on Mal's Picturebox

I've just posted a couple of snapshots

 of today's garden visitor - 

a speckled wood butterfly - 

on Mal's Picturebox

- even the globe thistle has been revivified -

chewing the fat

flittering and twittering

hopping about

I've just posted a couple of snapshots of a tiny visitor to the summerhouse step on 'Mal's Picturebox' at http://malspicture.blogspot.co.uk/2014/08/common-field-grasshopper.html

just a few visitors

I just posted this video on YouTube last evening and decided to share it here as well!

 

House Sparrows cereal break

independence day

 FOR FURTHER DETAILS CLICK ON IMAGE
or Go To https://www.thunderclap.it/projects/12814-independence-from-america-demo 

looking out the window

just random shots through our living room window -

our verdant garden