ME

ME

Wednesday, January 04, 2017

un-Common Cold and Burning Toes

 For the first time in many years I’ve succumbed to a full blown cold, hardly surprising, one might say, as my elder step-daughter Beth who stayed with us at Christmas, and my younger step-daughter who had her Christmas dinner with us at the end of December, were both ‘full of cold’. This time the whole caboodle, complete with headache, neuralgia, sinusitis, sore throat, coughing and sneezing, has taken possession of me. Quite strangely, since succumbing to M(yalgic) E(ncephalomyelitis), a full blown common, or even uncommon, cold has scarcely hit my radar; it’s almost as if the bodies dysfunctional immune system mysteriously managed to ward off these additional ailments.

Those many cold-free years seem even stranger as, in the run-up to my major ME collapse, flu-like symptoms seemed to be permanent squatters chez moi (see item STUMBLING THROUGH in ‘Mal’s ME Jottings’ PDF - https://www.scribd.com/document/193365025/Mals-ME-Jottings-Extended-Edition



Last night, although I felt desperately tired, and in need of recuperative sleep, that was not to be; additional forces militated against this necessity. Having dosed on sundry analgesics, at intervals throughout the day, I later took my regular amitriptyline prior to anticipated sleep-time alongside a small dose of tramadol; it was an irksomely familiar ailment that served to prevent any efficacious slumber time. A sustained bout of ultra-sensitivity, a sensation of tingling, throbbing’ burning toes, at whose base there seemed to be an invisible ridge which couldn’t tolerate the touch of bed linen, and even the weight of the air at the duvets edge became unbearable at times. This found me struggling to mute my anguished cries and cusses of discomfort, and even an additional dose of tramadol failed to alleviate the pain.

Monday, January 02, 2017

DISTURBANCES



Today has been one of those where sundry, apparently minor, ailments decided to stamp their cumulative presence at the forefront of my consciousness. Earlier in the day, after an all too familiar restless and discomforting night abed, nothing troubled me more than my familiar nagging aches in limbs and torso but, by mid afternoon, cold-like symptoms in palate, sinus and gravelly throat moved dramatically to the fore. Quite early in the afternoon I’d felt rather light-headed, as the room became giddyingly hazy, moving in and out of focus, and I felt rather nauseous; although the experience was reminiscent of when I suffered with labyrinthitis, on this occasion it dispersed rather swiftly.

Unfortunately, a couple of hours later, as I prepared to take Piper for his evening walk, the light-headedness returned with a vengeance and I had to reach out to the hall wall to prevent myself falling. Strangely, I’d been considering whether I should once again resort to use of a walking stick, to support me on my gentle perambulations. My OH helped me back to the lounge where I rested on the sofa feeling pitifully sorry for myself and indescribably fearful. It seems that too many consecutive nights of un-refreshing sleep aren’t too good for one’s sense of well-being. Never mind though, I should by now be more accepting of the state of unwell-being that has accompanied me for the past thirteen years.

The persistent detonation of fireworks, by persons known and unknown, preceding and subsequent to both Bonfire Night and New Year’s Eve / Day have at times turned our outgoing rescue dog, Piper, into a quivering heap seeking sanctuary in corners, under cushions and, squeezing into previously non-negotiable spaces, besides, between, and behind the seated forms of ma belle and myself. On New Years Eve he, meaning Piper, ran up to the bedroom and snuggled into the bed behind my beloved, and as the erratic explosions continued well into the early hours, eventually burrowed under the duvet to settle down between the recumbent forms of his people.

Fortunately for ma belle, very little disturbs her slumbers and, even after the aforementioned disruption of the nights’ more usual routine, she still emerged bright and early to give Piper his morning walk before going out to lead worship and preach at Harlow Moor chapel. As for me, my fitfully erratic sleep pattern was only marginally more disrupted than is the norm.

Tuesday, November 15, 2016

UPROOTED

A general mode of tetchiness rapidly transmogrified into an explosive compound of anger, frustration and despair. All of a sudden, slow oozing droplets of distress became a raging torrent of tears. The trigger for this outburst was the conclusion of Zadie Smith’s “NW”, as dramatised for lasts nights transmission on BBC2; the drama itself had plenty of pathos, quite brilliantly portrayed, but much of this, though moving, still left me as an involved observer of the characters lives but, far from an emotional wreck.

What really led to my emotional eruption was the closing scene where Natalie and Leah, regardless of their present more prosperous middle class status and location, almost yearn for the life and companions of their far from glamorous early lives together with their friends from that era. That early life was in Kilburn, an area with which I was quite familiar when I lived in NW6 in the early to mid-1960s. Even so, it wasn’t even the specific location that triggered my emotional collapse; their awareness of having roots in a community where friends and acquaintances retained significance.

It was almost as if a curtain had been raised on my social and emotional stage, a platform on which I stood alone and rootless. Having been born in Canterbury, where doodlebugs celebrated my nativity, I have absolutely no links or memories of this place. My parents moved us on a couple a couple of times in my early preschool childhood in Sussex and Hampshire, there was little chance of having or retaining any significant friendships. My clearest memory of our time in Bournemouth is playing with a toy red lorry whilst shouting out “mackerel, fresh mackerel” and misguidedly crunching an acorn or two. I also recall being in isolation hospital, together with my big brother, and seeing my parents on the other side of a glass screen, and also simultaneously remembering the excitement at having my very own tin of dentifrice.

From there, we moved to the industrial north, to parts of Lancashire, West and North Ridings of Yorkshire, and county Durham all before leaving school at the age of sixteen. Shortly after leaving school I travelled alone to the Sussex coast for my first temporary employment, whilst in the meantime my parents had moved to rural North Devon where I subsequently joined them and found further employment until I was able to start nurse training in Exeter. Since the age of 14, whilst a patient in hospital, I’d known that nursing was my ideal job but, sadly due to an inability to adapt to nightshifts it didn’t work out so, a brief return to N Devon preceded my move to London NW6 to work in Ministry of Labour HQ. Once again, whilst residing in the big smoke, my parents had moved on, first to Staffordshire then, three years later, to a small market town in rural Lincolnshire.

Having burnt the candle at both ends, indulging an appetite for various intoxicants and exotic substances, a mental health breakdown ensued and, I visited my parents for a few weeks rest. This rest swiftly took on another form as a cocktail of beer, spirits and sodium amytal, led to me putting my fist through a few windows before being picked up by the local constabulary, and a consequent period of sectioned containment in a psychiatric hospital on the edge of Lincoln. Ten months later I emerged back into the real world, returned to London, only to discover that I could no longer cope in that environment and, a return to Lincolnshire was in order.

From Lincolnshire we moved to a village in West Yorkshire from where I decided to apply for university to study Philosophy and Theology as a ‘mature’ student. Having received four acceptances, purely on the basis of interviews, I decided on University of Hull and one year after graduation pursued post-graduate studies in Sheffield.

I have lived in my present part of North Yorkshire since the late 1970’s but, it took considerable time before I took on any sense of belonging, eventually attaining a wide circle of friends and acquaintances through both my arts related and, subsequent, church related employment. My social life expanded greatly from the eighties of the twentieth century through to the early noughties of this century. Meeting ma belle Helen in  the last year of the old century, and marrying her early in the first year of the present century, has been by far the most wonderful event in my life. My love for her grows with every passing day but, I still manage to upset her with an angry tetchiness that simmers just below the surface of me.

Since succumbing to moderate ME (myalgic encephalomyelitis), late 2003, all contact with (apparent) local friends, indeed the friends themselves, have evaporated from my life. From being quite gregarious, I was transformed into a semi-housebound sad-happy git; no longer able to venture out to (or cope with) gigs, theatre, jazz venues or church services, even visiting the town centre (in the company of ma belle chauffeuse) can turn into a most daunting venture.

Where are my roots? I don’t seem to have them!

The church, where I had latterly worked as caretaker/ steward, turned its back on me because my illness, which lead me to an abrupt termination of employment, was interpreted by both vicar and curate felt as my deliberate letting them down. Indeed, when early in the illness I managed to attend a service, John the curate suggested to me that I was brazen/ had a nerve to show my face there. The only lay  member of the church, at which I had been a housegroup leader, a group leader on the Alpha course etc., came to visit me was to invite me to be another bum on a seat for Back to Church Sunday. Localised secular friends have been equally negligent, since the illness took hold of my life.


Isolation, loneliness, is the baggage that seems to accompany the onset of this dreadful illness – Myalgic Encephalomyelitis.

Sunday, November 13, 2016

POPPY DAY DILEMMAS - Re-post

As both a Christian and a Socialist, I always have problems with the celebration of militarism otherwise known as Poppy Day. Whether or not I would have had sufficient strength of character to stand by my pacifist principles in extreme circumstances is something that used to cause me considerable concern but, there are also other issues involved.


Much soul searching was involved, even when I had attempted to renounce my Xtian faith and, subsequently joined a revolutionary socialist organization. Don't get me wrong, I was already a socialist when I became a Christian, and failed to see the apparent necessity of taking on the petty bourgeois pretensions & morality that seemed to be the norm for evangelicals those days and saw communism, in an idealistic sense, as being far more compatible with Christianity than capitalism.


I moved freely between and amongst various groupings of the left, dismayed by much of the ideological bickering; I did manage however to retain friendships, in spite of (doctrinal) difficulties with members of factional groupings other than the one for which I settled.Too many of my comrades seemed to revel in the prospect of a good rumble, one could almost sense them salivating at the prospect of a bloody uprising. I consoled myself with the thought that bloodshed, like class warfare, is generally instigated by the capitalist ruling class and therefore resistance to their unjust power structures, which could only be maintained by the use of force, became a moral imperative.


But what of turning the other cheek; to be honest that may be the only option when confronted with the combined might of military and police, should the true wealth creators, the working class, attempt to fight for a truly just and democratic society where real equality of opportunity for everyone in a society focussed on care for one's neighbour. Bear in mind that I use neighbour in the broadest sense, that of the parable of the good Samaritan not the cynicism of "charity begins at home". To turn the other cheek is an expression of disdain for the values of those who rule by force. I did decide,however, that if I was able to shake off the shackles of my religious faith I would be happy to take up arms in the cause of a workers revolution. At the same time I recognized that there was no way I could take up arms for Queen and country, the capitalist cause. A complex dilemma indeed; the message and life of Jesus had so firmly grasped me that I still felt guilty at my readiness. albeit hypothetical, to take up arms for a revolutionary cause.


I fully appreciate the preparedness of young people, often from socially deprived areas of the nation, to join the armed forces in order to learn a trade and earn a living. Since the politically wilful destruction of our industrial base other job opportunities are greatly restricted. Nor do I doubt that many military personnel are serving in support of deeply held principles, whether understandably honourable or misguided is here irrelevant. For me a major scandal of the Poppy Appeal is that the welfare of those who have served their nation, and it's capitalist cause, should be dependent in any way upon charitable donations. It is the responsibility of the state that recruits, employs and puts the lives of these young men at risk,for whatever ideological motivation, to look after them.


I regret the loss of life of civilians and military personnel equally; I abhor the slaughter of innocents on the imperialist whim of any ruling elite. Should there come a Remembrance Day with no uniformed military personnel or insignia on display, at Cenotaphs and commemorative church services, I would no longer see the commemorations as show of support for militarism but, rather an acknowledgement of the futility of war.
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This post originally appeared here on 10 November 2010

Thursday, November 10, 2016

THE PIPER's TALE Wags


No matter how long, or short, the time spent out of sight of our beloved dog, the welcome back we receive is heart meltingly, heart warningly, touching and enthusiastic.  Wherever he’s sat or resting, his tail beats a rapid drum roll, on the adjacent surface, as he welcomes us back into the (his) room. A hind leg is raised by the reclining Piper, as he rolls onto his back in preparation for a chest rub from his sentimental chattels (ma belle Helen & myself). The invitation extended is usually enthusiastically acted upon.

My beloved OH has usually taken him on an extended morning walk sometime before I, myself, emerge from the duvet lair. His early breakfast, and morning exercise, seem to provide (or ignite) a core of boundless energy, in Piper, as he leaps over armchair and sofa arms and back, to give me a most enthusiastic, amusingly vocalised, welcome into the world of the day people.

The afternoon/ early evening walk, usually, finds him in the company of both Helen and myself, as I can manage him better on the longer lead (5 metres), a retractable lead for dogs weighing twice Piper’s weight, proved too weak for him; original and replacement both failed. My beloved can sometimes manage him with a stronger extendable lead, dependent on ground conditions. He has demonstrated rather worrying Houdini like escape routines on a few occasions but, this morning, he launched a powerful forward surge, on sighting or scenting a squirrel, which necessitated my beloved releasing her hold on the (manageable?) short lead, returning a few minutes later minus lead!

At present I’m undergoing rather more rapid onset bouts of pain, ranging from throbbing, to burning, cry out loud varieties. The sites of these pains fluctuates between knees, wrist, elbows, shoulders and, especially at night, a burning sensation in the toes which makes even an normal contact with the bed sheet a quite excruciating experience. Problem is that the dull, low level, aches and pains that have been a long-term companion, have a habit of metamorphosing into more intense, nausea inducing varieties. Apart from this, I have little to complain about and continue to enjoy life & love to the full extent physical and emotional stamina permits!


My beloved not infrequently refers to Piper’s adventures on her BRIGHT LIGHT blog, alongside her reports on services at her chapel, and chapels where she is leading worship as a local preacher, and other more general personal / family events.

Wednesday, September 21, 2016

A CRY of SELF-PITY – an ATTEMPT to EXORCISE the PAIN



Although I’m, by now, well used to unrefreshing sleep, the past couple of weeks have found me experiencing the most erratically intermittent bouts of night time rest, haphazardly interlaced by an alarming array of discomforting, nausea inducing, peripatetic tingling and throbbing parcels of pain.

A spasmodic, sudden onset, sensation of the knees being crushed and clamped from either side, by surreptitious g-force avengers, is the most recent addition to my more familiar catalogue of aches and pains. Sometimes the pain is partially alleviated by the donning of sports knee supports; at other times the supports simply add another layer of throbbing discomfort. On other occasions my only recourse is to an extra dose of tramadol, even though its efficacy is slow to be realized.  

Wrists and/or elbows frequently ache and throb, for no apparent reason, but application of elasticated supports soon alleviates the worst excesses of the discomfort. For a considerable time now  I have avoided donning any nightwear on the torso, as PJ jackets seemed to exacerbate the nausea inducing discomfort emanating from axillary lymph nodes. More recently I’ve had to don jacket or vest, at times, to alleviate a disconcertingly abstract discomfort around the shoulders and armpits.

The most infuriating of the many nocturnal disturbances / sleep preventatives is a sudden tingling rasping sensation on the tops of my toes, sometimes almost feeling as if it emanates from a felt, but non-existent, elevated ridge, on top of the foot, just behind the toes. This frustrating event usually occurs just as my body and mind feel sufficiently sedated to visit the land of nod. Its onset is frequently marked by an almost uncontrollable flailing of the lower limbs and, an angry muted scream of profanities emanating from the mouth of yours truly. The touch of the sheet, against the suddenly over-sensitive toes, can seem to be an overwhelming tortuous  burden.

No matter how tired, or even exhausted, I may feel as I prepare for my bed-rest, these sundry ailments and irritations ensure that I rarely achieve more than occasional brief cat-naps for many of the nocturnal hours.  In terms of sleep, my requirement / need rarely seems to be fulfilled.

A large bag full of supports for shoulder, wrist, elbow, back etc. now accompanies me on the daily transition from sitting room to bed room, from day into night.

A CRY of SELF-PITY – an ATTEMPT to EXORCISE the PAIN


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PS 22/09/16 see also:

Restless - Illustrated Poem

on 'Mal's Factory' which reflects a similar theme!

Monday, September 05, 2016

a modicum of exercise



Although I have never considered ME as primarily a ‘fatigue’ condition, pain, cognitive difficulties, postural hypotension, sensitivities to sound and light, and post-exertional-malaise, being more distinct identifiers, the past several days have found me in a quite sustained  state of shattered exhaustion. Intermittent, unrefreshing, nocturnal episodes of sleep, do little to relieve fatigue, even as a component of quite prolonged periods of (supposed) rest.

This afternoon, although still somewhat achingly tired, I took Piper for a walk, accompanied by ma belle OH, and, in spite of having to shorten the circuit on which we roamed, I felt (emotionally) better for the exercise! Admittedly, a couple more painkillers were necessary to ease the aftermath experience.

All in all, the presence of Piper as a family member has proved wonderfully therapeutic, and the warmth of his adoring gaze is more than sufficient to melt the heart of this hardened cynic, regardless of how under par, physically and/or emotionally, I may be feeling, as the blessed recipient.

Much as our beloved pet enjoys both bounding leaps, and slow, nose led, meanders around the garden, he has developed an undue readiness to dig holes in the grassy area, frequently followed by an attempt to sneak back into the lounge before we have a chance to check the cleanliness of his fore-paws.

As recompense for the brevity of this posting, I’m adding a few recent snapshots of the garden (and Piper in it’s environs)








Monday, August 29, 2016

The Piper voices many tunes

Time races by; as one gets older the weeks pass like days, months pass as quickly as weeks and, years breast the finishing tape just as one’s getting used to the present year’s number. Thinking back to childhood days, each passing term-time seemed trudgingly ponderous, as I yearned for the next holiday break from school; one annual visit from Santa Claus meant an eternities wait until the next festive excitement.

Anyway, the haste with which the weeks pass by is presented as my excuse for the paucity of blog postings from yours truly. Each day I promise myself that tomorrow may be the day I settle down to composing a post but, these promises are usually of the same order as those made by Owen Smith during the present unnecessary contest for the Labour Party leadership!

Now, “follow that”, I say to myself, concerned that by the time I settle down any reportage will already be out of date. Sleepless, discomforted, nights abed have once again become a norm, or at least, the briefest of snoozes is swiftly curtailed by nauseating discomfort on far too many occasions of late. Somehow, eleven hours of bed rest leaves me totally unrefreshed, my deepest sleep usually being attained from around the time I should be breaking my (nocturnal) fast!

Piper, our ‘schnuffelhund’* (actually mixed breed with a predominance of beagle) is therapeutically filling a lot of my waking hours, working miracles when I’m feeling at my lowest ebb of physical and emotional stamina. I can no longer imagine a family home without him. At times he becomes a Jesus dog, (literally) washing his disciples (Helen & myself) feet, as he rests alongside our respective reclining forms on the sofa. He has already familiarized himself with many local pathways and bridleways and, he’s determined to direct his walking attendant towards his preferred course of progress.

Although he runs and ambles freely in the garden, we’re reluctant to release him from lead and harness on our outings; his desire to follow any interesting scent, regardless of where it may lead, could lead to frustrations and alone-ness for considerable periods of time for his attendant / handler. It’s always difficult to know how he will greet any other canine in the vicinity, lots of friendly mutual sniffing can so easily switch to a bold growling, or even snarling, disposition if memories of earlier beastly attackers occur. (We not infrequently are witness to his bad dreams and, he still bears scars, on head and body, from the severe maulings he received in his Spanish pound years).

What amazes me most about our therapeutic miracle is the range of voicings he uses to express his emotional needs and fulfilments; a soft, low, purring growl denotes contentment as he snuggles up to his human companion/s, a more sustained rolling growl denotes the approach of visitors o the house whilst a more positive bark is reserved for feline or human intrusions on what he considers his territory.

A whistling nasal whine is Piper’s lament when his mistress leaves the house without him but, this swiftly settles when a.n.other proffers him due attention. An anticipated walk brings forth a yelping bark, accompanied by a hip wiggling tail wagging dance. A gentle whine as he wanders through the dining area may symbolise his desire to run out into the garden but, when he suspect his meal is being prepared an excited bark (less baritone than that of territorial declamation) accompanied by full-body wiggle expresses his preparedness.

His sheer range of expressiveness is sufficient to boggle one’s human mind!

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* ‘schnuffelhund’ my own personal nomenclature for Piper’s breed

Friday, July 29, 2016

Repost on Mal's Factory - On Listening to Mahler

Having been totally absorbed by a performance of Mahler's Symphony No 3, conducted by Bernard Haitink, from the BBC Proms courtesy of BBC4, I thought it time to repost a poem of mine on my poetry blog. The poem On Listening to Mahler can be found on Mal's Factory here - 

If you're wary of clicking links the address, which you may cut and paste is:

https://malsfactory.blogspot.co.uk/2016/07/on-listening-to-mahler-response-in-six.html