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