ME

ME
Showing posts with label ME. Show all posts
Showing posts with label ME. Show all posts

Thursday, March 14, 2024

Wreckage & relief

This is a post I hastily scribbled down, primarily for my own benefit, several days ago. Having just stumbled across it again I thought it was maybe worth sharing 

            Wreckage & Relief 

 Where to begin, where should I have started in trying to understand my current drought of both emotional and physical stamina. The easy bit is accepting that we are psychosomatic beings, it’s pretty obvious that when one is physically, and not infrequently painfully, well below par it inevitably has an impact upon one’s emotional/mental sense of wellbeing.

 I’ve returned to a pattern of restless discomfited nights far outweighing any restful ones. I am fortunate that my combination of amitriptyline and tramadol about an hour before bedtime, (the efficaciousness of which has been reverse demonstrated on those occasions when I have omitted this cocktail, either accidentally or purposefully), still serves to keep full-blown restless legs at bay.

 Discomfort in armpits, elbows, wrists, feet and knees seem to come and go in quite random fashion both nocturnally and diurnally. On another level, reading has become difficult (once again in random fashion) as I seem to lose concentration after just a few lines and futilely return to the beginning. Emotionally, tears are erupting with very minor prompts such as hearing of the death of one time friends and comrades, even though I’ve not been in contact with them for some time. Listening to music, frequently makes me think of, not too far distant, times when I’d have been enjoying the same music or song with my beloved Helen, who of necessity has had to reside in a nursing home since January of last year, following a few years of severe physical and mental health problems. Those recalls are invariably of a bittersweet nature, and I find myself having to reach for the box of tissues.

 Much of what I’m experiencing is reminiscent of when I succumbed to moderate ME, back in the noughties, which led to my premature retirement from any formal wage-labour! 

 The attempt to write down my current physical/emotional state of being has somehow driven the darkest clouds a little bit further away. 

 Malcolm Evison 08/03/24

Tuesday, April 02, 2019

Anticipating the Unexpected!?


Today, just sitting, no laptop, no tablet, no newssheet in my hands, none of the usual suspects for me to blame; just sat, watching a movie on TV when, suddenly, tiredness, acute throbbing pain in elbows and wrists overwhelmed me. The by now familiar, yet almost indescribable, hollow aching, disconcerting, nausea inducing, discomforting pain in the armpits rapidly produced a counterpoint to the more acute staccato rhythm playing in and through the wrist and elbows.

A further sensation, as if I felt the blood falling and draining from my face and head formed an accompaniment to the sudden pallor, acknowledged by my beloved OH almost immediately after the events’ dawn.  Come to think of it, I should have been more prepared for these events onset; on emerging from the duvet lair, and venturing towards the bathroom, my lower limbs felt hollow and feeling as if the knees  were attempting to bend the opposite way to the joints natural construction. By now, I should be prepared to anticipate the unexpected, yet again!

Tuesday, August 07, 2018

and suddenly they flow



and suddenly they flow


pains come and go
and tears flow
a creeping fermentation
of an odious decay … “ - Malcolm Evison 060818

Today has not been the best of days, nor yet the worst; it has been one helluva roller-coaster ride of both sudden and slow onset aches and pains, a turbulent discharge from both physical and emotional reserves of stamina. Tears have flowed abundantly on a few occasions as I’ve attempted to explain the frustration of living with a chronic illness, along with several subsidiary ailments, each randomly producing varying degrees of aches and discomfort, ranging from reluctantly accepted background throbbing, rumbling aches, to sudden sharply acute attacks of pain.

As I’m also in my mid-70s (age wise) thoughts of mortality are all too rarely far away, but come to the fore with each new acute onset of pain and discomfort.
Over the past weekend I’ve experienced symptoms quite akin to a flare-up of both gall-bladder (cholecystitis) and diverticular disease in relatively acute form, neither of which do much for one’s morale! At times I had to wonder if my alto and tenor burps could present a non-dissonant counterpoint to the bass line of flatulent release.

An underlying throbbing ache and discomfort in the abdominal region is interspersed with a sharper more stabbing intermittent pain. I’m still struggling to come to terms with a sharp stabbing pain which intermittently occurs at a point apparently just behind the bottom left hand side of the ribcage. Erratic bowel behaviour has long been a problem, swiftly putting paid to any notion of getting away for a break, but in any case the sensory overload of a short car trip into town can frequently prove overwhelming.

An attempt on Monday to hold and read a rather slim paperback book led to a need to don wrist & palm supports, elbow supports, as well as having to stretch my arms across my back, in an attempt to overcome a nausea inducing hollow ache emanating from my armpits. These are not at all uncommon symptoms as they tend to occur when holding a newspaper, using a laptop or tablet PC, just one of the little joys of being.

Attempting to explain the frustration I felt, bordering on despair at times, to my beloved OH just led to an overwhelming flood of tears from yours truly and, quite understandably caused upset to her.


***


This morning, Tuesday 070818, ma belle called the GP practice to see if I could get an appointment, as whenever I check up online they never seem to have any appointments available during the next couple of weeks, and thought they would maybe prescribe some antibiotics. (Regular readers may remember my report of a previous gall-bladder flare-up being recognized and successfully treated with antibiotics by my own GP, and the following arrangements for  a cholestectomy –  an operation which had to be cancelled as, in the meantime I succumbed to a minor stroke - http://sinnaluvva.blogspot.com/2017/06/on-mend-and-back-again.html and http://sinnaluvva.blogspot.com/2017/10/on-opening-and-closing-of-doors.html
are the posts that refer).

I duly received a call back from a nurse practitioner who decided that as I wasn’t at that moment in discomfort, I was still abed and not yet having breakfasted, an appointment with a locum for Thursday morning was made. As I explained that I hadn’t attempted to eat anything this morning still being in the duvet realm, she commented that still being in bed at shortly after 9.00am was a wonderful luxury for the retired. Fortunately I refrained from cussing as I explained to her that no, it isn’t a luxury as for the past 14 years I’ve required a bed rest of  around12 hours per day, sometimes more, (non-refreshing sleep being a component of, and exacerbating the distressing symptoms of ME).

Well, I’ve managed to get thus far without any tears but am now desperately in need of a rest; well it is 11.30am … time for wrist and elbow supports once again, the armpits … etcetera, etcetera …

And on it goes but, at least for now, I’ve staunched the flow.

Saturday, April 01, 2017

Lost for Words

It’s one of those times when language seems to be somewhat limited, lacking in pertinent words to describe a particular mode of being. What I have been experiencing, earlier today, is an intense discomfort that not only induces nausea but, also brings me down into a tearful state. This sensation, however, feels to me totally distinct from anything that I would normally describe as pain; more like a dis-ease with the way my flesh and bones fit into their enveloping skin.

Quite out of the blue, whilst doing a bit of catching up (on e-mails, twitter feed etc.) on the laptop, my elbows suddenly began to throbbingly ache in response to simple tapping on the touch-pad, a sensation of tenderness in the axillary lymph nodes followed with only a minimal delay; the nausea induced by these events meant I had to immediately desist from any laptop activity. In response to this sensation I swiftly donned my elasticated elbow supports to help alleviate the discomfort.

As I attempted to relax / recline on the sofa, I suddenly became aware of a discomforting ache in both knees. Next step was to don my elasticated knee supports. At this stage, I would still describe what I was experiencing / undergoing as an intense discomfort rather than pain; perhaps what I would describe as pain is more the experience of a sustained sharply stabbing irritation rather than the initial chronic dull throbbing ache of discomfort and dis-ease.

There are times that the simple donning of supports eases the nauseating discomfort but, on other occasions they prove less efficacious. As the discomfort moved more towards my pain zone, time seemed appropriate to resort to pain-killers (100mg of tramadol); within half-an-hour the discomfort and impending pain began to dissipate.


I’ve got to admit that the moment when discomfort (chronic discomfort) and pain (acute pain) merge or transpose is extremely hard to define, or even recognize. Sometimes, words quite simply fail me and, the cussin’ swiftly takes over.

Friday, March 03, 2017

Sat to please

                            SAT TO PLEASE





Piper gently whines missing his mistress, and (the now back home) recuperating Beth; no matter how he laments these absences, regardless of duration, they never seem to affect his appetite. The prospect of a treat brings out his sunnier disposition, and his heart melting gaze of adoration; a non-stop supply of food would be his idea of paradise!

I can frequently be a miserable bugger, feeling totally emasculated as physical and emotional stamina rarely seems up to (e.g. furniture shifting / re-arranging) tasks that once would have been a doddle.

No matter how much I appreciate those activities that I can (and do) manage, an aggressive and anxiety laden self-pity, far too often, takes over. Our wonderful hound quite frequently alleviates these more morose moments, just by his close proximity and his readiness to please.


Sunday, January 22, 2017

Marking Time




There are moments when time weighs so heavily that the prospect of longevity seems like a cruel joke; at other times life seems far too fleeting. The heavy weight is especially apparent when ones achingly exhausted brain and body seem to resist any appropriate onset of refreshing sleep; the light-footed moments are those spent in awe and wonder before nature and ravished by the miracle of love.

It seems to me that sundry aches and pains, regardless of excruciating degree, are far better coped with in daylight hours than in sleep denying darkness. Nothing against darkness per se, I used to love the experience of being out in the countryside enraptured by a star sprinkled blanket night; these days physically discomforted, bed restrained, night can seem a desperate time of isolation as much needed sleep drifts, remorselessly, just out of reach.

The close proximity of my beloved, even though frequently deep in slumber, serves to alleviate the worst excesses of my despairing self-pity, without her these momentary lapses into a sense of grievous desolation would be even more unbearable; even so ma belle frequently deludes herself into thinking that she’s unable to help me!

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.

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)








Saturday, July 23, 2016

Flummoxed by Circumstance

The heat and humidity of the past week have certainly, but unsurprisingly, had a detrimental effect on my relative state of well-being. Even before the hottest day arrived, I was already suffering payback, for over-exertion, in my desire to optimize the length of time & distance spent walking our gorgeous dog Piper.

Already impaired by that payback I'm somewhat flummoxed when trying to determine how much of my current ailments, tenderness of lymph nodes (both axillary and cervical), aching bones feeling somewhat as if they've been hollowed out and lined with lead and undergoing extreme gravitational tugs of war, are a continuation of the earlier payback and how much solely a response to climatic conditions.

I've reluctantly had to resort to supports applied to wrist, elbow, knee, ankle, and even tubular bandages covering most of my arm. I don't know whether this use of tubular bandage serves as some kind of lymphatic massage but, it certainly helps. Unfortunately, alongside the physical ailments, a re-active depression has had a deleterious effect on my ability to respond rationally to any minor physical or emotional setback.

Yesterday morning as I lay on my bed, chokingly sobbing, Piper ran up the stairs, placed his head beside mine and lay with me for a few minutes; that in itself demonstrated that his presence in our life proves therapeutic. I have actually managed a couple of shorter walks with the boy in the cooler parts of the evening.

Piper is certainly becoming more confident since joining our family, barking a confident disapproval of large darkly coloured dogs encountered on his walks, yet offering friendly sniff-based greeting to many other canines that he had at first cowered away from. Judging by this behaviour, I suspect that the scattering of scars on head and torso, received whilst in the pound, were caused by a really large dark coloured canine. He has certainly gained a good knowledge of our nearby footpaths and bridleways and seems to let his walker know when he's ready to head back home.

his mistress's scent

Piper

Piper


Although I spend much more time with the dog at home, than my beloved OH manages (owing to other commitments), she is definitely his dominant other. Fortunately, he now spends less time dolorously searching for his mistress when her other duties call and, this weekend he has been left solely in my charge, as his chosen other ventured down to the south of the country for a couple of days and nights. Now, after 10 hours of Helen's absence he has just been casting a few longing glances at the door of the lounge but, then goes trotting around the garden, looking for possible sources of mischief. On returning to the house he welcomes my attention before checking out the door once more, anxiously awaiting his mistresses return.

These days I hate, almost fear, spending evenings and nights alone in the house, feeling rather vulnerable, due no doubt, at least in part to my sundry physical (and reactive emotional) ailments but, I'm sure that Piper's companionship will help.

Thursday, June 02, 2016

Shatteredness Conundrum

A SHATTEREDNESS CONUNDRUM


It's not so much the chicken and the egg as the pain or the tiredness.

Does weariness simply allow a latent pain to exaggerate it's presence or, is it the tired bodies vulnerability that allows a deep pain and discomfort to take hold? Today, a day of only minimal exertion, a sudden onset overwhelming sense of fatigue was swiftly subsumed into an entangling, nerve jangling, multiplicity of pains.

These acute pains, not the overly familiar dull aching wearying variety, swiftly took hold in ankles, knees, armpits and wrists.  The intense discomfort resulted in a sudden welling up, and gushing forth of tears; tears of frustration and, temporarily, despair.

I hate to take my pain medication other than when it's absolutely necessary although, I'm coming back to the notion that I should take the occasional pre-emptive dose as well. The problem then arises as to how I discern whether a lower or negligible level of pain is the result of this pre-emptive strike or, could it simply be a normal spasmodic reduction in pain level.

Thursday, May 19, 2016

The Guilt of a Spoonie Wimp





Convulsive weeping, the pattern of my day; a sense of failure, weakness or betrayal, none of it makes sense! After weeks of feeling further under par, a decision to increase my dose of amitriptylene (up to now used to deal with some nocturnal discomfort) towards an anti-depressant level just made me feel worse. Persistent headache, intensified abdominal bloating & discomfort, loss of appetite (difficulty swallowing even), postural hypotension alongside a more general dizziness, all seemed to coincide with the increased dosage.

Recent weeks had seen a marked increase in my stress levels, as work on the new extension kitchen, dining room, and walk-in shower, dominated my conscious awareness of every day-time, and the added confusion of life in total disarray in other parts of the house proved more burdensome than either of us had anticipated.

Sleep and pain patterns have become even more erratic than usual but then, always at the back of my mind was a proposed visit to Worthing to celebrate the Golden Wedding Anniversary of my brother & sister in law, Dave & Janet. Having plucked up courage to book an hotel room, sometime last week, for a four night stay, the imminence of the travel became more real but, I felt the special nature of the occasion would somehow enable me to carry it through.

Today was to have been the day of travel (more like travail) – a journey of approx 6 hours duration – but although the car was packed with our case and rucksack, necessary medications having been packed last evening, the event was not to be. At present even the five to ten minute journey into town can seem like an arduous expedition so, I should have realized that this event was not to be. First mistake was removing myself from the duvet lair, after an all too familiar restless night, over an hour earlier than is my norm.

Wham, the enormity of the proposed venture hit home with pile-driver force; I would love to have been there for the celebrations but, my own wimpish nature resisted the travail. That’s when the tears got into full flow, a deep rooted feeling that I was really betraying my brother & sister-in-law, I began to wish I didn’t love them, that would have made it far easier to turn down the invitation. The vicious circle followed – yes, I should make the journey, no matter the deleterious effects that may have – no, I’d be foolish to travel but, that’s letting my brother down.

Sadly, the journey is not taking place, the sense of guilt weighs heavily. 

Wednesday, March 02, 2016

A SLOW SLIDES JOURNEY INTO DAYMARE

A SLOW SLIDES JOURNEY INTO DAYMARE

Today would be best forgotten but, it’s my failure that I find it hard to forget, just as I find it almost insurmountably difficult to forgive. Much of today’s problems, other than the generally ongoing ME related ailments, emanate from the inappropriate prescribing by a certain medical professional. That GP I am unable to forgive.

This morning I was forced to emerge, from the duvet lair, a good
1 ¾  hrs earlier than is my norm, to keep a previously postponed appointment at the hospital’s orthoptics department. The morning, apart from my unearthly hours emergence into the day, was also greeted with a quite heavy snowfall.

Anyone who knows me, at all well, is all too aware of my difficulty with travel of any kind and, this morning’s short journey, following the main roads rather than our usual shortcuts, was one of following and being followed by skidding and stalling vehicles.  This was just like living through a nightmare for my sensitivities. At one point, even my beloved chauffeuse thought we’d maybe have to call the hospital to cancel the appointment, this time at much shorter notice. In spite of prior weather warnings of snowfall the responsible(!) authorities hadn’t bothered to grit the roads.

Whilst my beloved queued, waiting to access the hospital’s car park, I made my way to the relevant department. As I looked for the right place I wandered past the turning, having been told it was to the left, by a volunteer near reception, whereas it was actually to the right. Having ambled along the corridor a notice clearly stated that patients for Visual Fields Test should take a seat “here”, which I duly obeyed. Several minutes later a couple of hospital staff ambled by and asked if I was alright; I in turn informed them that I was waiting for the visual field test. Evidently I should have first reported to a reception staton some twenty to thirty yards further along the corridor.

By this time I urgently needed the loo, and had a bout of re-active diarrhoea, before entering the surgery. The clinician was quite concerned that my head felt so hot, and I explained how this wasn’t unusual as I could sweat in a freezing environment, my body thermostat being shattered / wildly erratic ever since succumbing to ME.

About halfway through the tests on my first eye I required a break as my chin and forehead were so uncomfortable, and I needed a drink of water before I continued. No sooner was the patch transferred to the other eye, and appropriate lens in place than I became quite headachy and totally incapable of concentrating as all spun around me. I informed the clinician that I wasn’t able to continue the test and also cancelled and discharged myself from tomorrows appointment with ophthalmology.


I simply cannot cope with early hours or concentrated attention. The appointments would not, in any case, have been necessary had my GP not messed haphazardly with my medication. [Earlier postings have already dealt with this situation]


Tuesday, February 16, 2016

REALLY THE armPITS


My status on Facebook, posted early evening yesterday, read as follows:


“Much of yesterday went far beyond the Gethsemane experience, more towards identity with the flaying on that early Friday morning. Just as one form of deep discomfort, of a tear and nausea inducng variety, seemed to be easing, elsewhere along the ley line of the nervous system came a sensation of searing tongs being applied to sundry areas of the upper limbs & armpits.

Application of supports (wrist, shoulder, back etc.) at times preceded a necessity to discard oppressive items of clothing, such as socks, cardigan, shirts. A necessity to spread out one's fingers, their proximity to each other promoting a tingling dis-ease, was accompanied at times by a the need to clench upper arms in an almost impossible tightness to the torso, aided at times by having a scarf strapping them down. Lower limbs flexed and turned - so much so that I became unsure about how many of the positions were consciously attained as opposed to a rather sustained involuntary spasm. it seemed as if painkillers were refusing to act as burning searing discomfort imprisoned me for much of the late afternoon and evening.

That was yesterday. Today is a better day thus far. Really enjoyed the House Group / Bible Study chez nous this afternoon. A wonderful time of fellowship.”



Sadly, it was only a matter of a couple of hours before the torment returned. Even picking up the small tablet pc or a newspaper, instantly caused a gnawing discomfort in wrists and armpits and, clasping upper arms tightly to torso did little to alleviate the onset of a nausea sensation. I remained grateful for those afternoon hours of relative ease, hanging on to the gratitude response by way of compensation for the fresh onset of dis-ease.

Last night (from at least 02.30 this am) I had one of the most sustained periods of sound sleep than I’d experienced in more months than I can remember;  that certainly seemed a good omen for the belatedly entered new day. The sense of being enfleshed in an undersized skin soon returned and much wrist-strapping, arm clenching (tightly to torso) was required. As ailments seemed to ease, my beloved and I ventured out for a meal at the local eatery, a    pre-emptive celebration for our upcoming anniversary. It seemed a good opportunity to dine out, as on both Thursday and Friday I have hospital appointments to attend at around the apposite time, and other arrangements already in hand for tomorrow.

No sooner had we been seated at a suitable table than the act of holding a simple menu card released discomfort in the armpits and upper limbs. I just wanted to scream out loud, take off jumper and shirt before clasping shoulders with both hands –  arms crossed in St Andrew’s fashion.  This particular treat was not to be, so we returned home to catch up on a TV programme (‘Trapped’) that we’d missed on Saturday. At least at home I could clasp myself tightly, whilst sitting shirtless with arms firmly at attention. Meanwhile
 I sought out my toe separators to place between discomforted / discomforting fingers in  a vain attempt to eliminate bouts of nausea.

Armpits seem to serve solely to alienate me from my body at present but, hopefully. a fresh dose of tramadol will eliminate the still too pervasive pain.




Sunday, January 17, 2016

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.

Thursday, October 01, 2015

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.

Sunday, September 27, 2015

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.

Monday, April 13, 2015

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.

Tuesday, March 24, 2015

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.
 


                                          


Tuesday, October 07, 2014

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.