A transformative event

 

Just wish I could find a pre-emptive strategy for these sudden onset bouts of painful exhaustion, it’s not as if I can lay the blame on over exertion. I’d had a quite lazy restful day today, apart from an unduly early morning waking, from my fitful slumbers, as the hound expressed an urgent need to utilize the garden! I was able to get back into bed within ten minutes but, it seemed like an eternity before I was able to resume my slumbers. When I did finally emerge from the duvet realm there seemed little option other than a very restful day.

 

Around 18.30 hours, a painful tiredness enveloped me; it’s almost impossible to determine which came first, the weary tiredness or the pains in upper limbs and feet. A not unfamiliar gnawing discomfort from the armpits served to induce feelings of nausea and a few shouted expletives caught the snoozing hound quite unawares, although he did quite quickly proffer me his paw and snuggled up closer to me. The discomfort dissipated, of its own volition(?) as I listened to Sibelius ‘The Wood Nymph’, at the opening of tonight’s Prom broadcast on BBC4 before I was fully awakened by the vocal dexterity of soprano Anu Komsi in a newly commissioned piece, from Laura Poe, ‘Laulut maaseudulta’.  The soprano’s performance reminded me of the excitement I felt when I first discovered Cathy Berberian’s vocal gymnastics in the 1960s. A transformative moment.

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

A Walking Talking Aching Conundrum

Confusion mounts but, is it the result of tiredness or of excruciating pain, does it stem from extreme exhaustion or intense nauseating discomfort. The evidence is difficult to decipher, in fact the evidence posits itself as the dilemma! Quite frequently the sundry pain and discomforts, especially those in the limbs, seemed to attack just at the point when a temporary exhaustion sets in but, on closer observation I have realised that the exhaustion, or a sudden loss of stamina, follows from my struggling with both aching discomfort as well as more acute pain.

There seems to be an obvious correlation between pain and tiredness but, it also tends to be a classic chicken or egg type dilemma. Recently, what I seem to have been experiencing is an excruciating (pain of) tiredness which may precede or follow bouts of the following kind. The experience, rather than pain, is as if, feet, legs, arms don’t belong to the torso but produce a kind of nauseating discomfort/dis-ease! For longer than I care to remember, my reaction to a randomly occurring hollow ache in the armpits has been one of nausea.

The armpit discomfort, at times, seemed to ease when I discarded my fleece or cardigan, donning a poncho in their place. At other times, an almost contradictory process brought temporary alleviation of the symptoms, namely donning a shoulder support which seated itself firmly in the armpit. So, a freeing up of pressure or applying additional pressure to the aching area, at different times provided relief from the same symptom.

A sudden onset acute pain, in feet, knees, wrists and/or elbows may occur during the day, immediately diminishing my concentration on whatever minor task I’ve been involved in. These symptoms may also occur as I lie in bed at night although, at those times restless legs become the major problem. A combination of low dose amitriptyline (30mg) with 50 or 100 mg of tramadol seems to prevent the restless legs kicking in but, I have no desire to become reliant on the tramadol dosage. In the case of joint pain, a combination of applying elastic supports to the affected points preceded by a generous smearing with ibuprofen gel, gradually diminishes the more acute discomfort.

By this point, you may well think that I’m a physical wreck and, I’d be tempted to agree with you. I still feel blessed that I have access to lots of good music on vinyl, CDs, and airwaves, and movies on DVD, which enable me to enjoy life, pushing the chronic aches and pains away from their dominance of my mindset. It’s strange how a sudden sharp sound, a pan lid falling, a door slammed shut etc. can produce a chest crushing bodily response, I am still able to take musical climaxes in my stride.

An Overshadowing of Events

I’ve never really been one for planning; taking things as they come, with opportunities galore for spontaneity and improvisation, is more my favoured route. Sadly, things in the real world seem to be in conflict with my ideal and, planning becomes necessary when it comes to grocery provisions, especially so for festive celebrations. It is my good fortune that ma belle OH is the grocery shopper, especially so since I’ve found it difficult to cope with the sensory overload from any store other than the, now almost extinct species, corner shop.

As Christmas Day approached I got into the, unfavoured but necessary, routine of pre-preparing certain food items before the big day itself. I enjoy cooking the main meals but, tend to get a little stressed by these special occasions. At least there were no great numbers to prepare for, our elder daughter staying with us through Christmas Eve evening until Boxing Day late afternoon whilst the younger sibling was coming over at about 2.00pm, on the day itself, together with our grandson, following his mid-day nap.

The evening before Christmas Eve day I started experiencing very dramatic floaters in my right eye and, found myself stretching out to remove a soot covered cobweb from a corner of the loo. Of course neither the soot covering, nor the web itself, existed out there in the room but were rather hyper 3D-ised visions stemming from false retina readings. Shortly afterwards I started to have rather strident flashes of light appearing beside my right eye which I found quite disturbing. Christmas Eve morning, ma belle contacted my GPs surgery which arranged a call back from one of the doctors on duty that day.

A short while later, the ‘phone rang and ma belle OH passed the handset to me, at which point I was told about arrangements for the operation, with the sudden realization that this call was for my beloved. After months of waiting, they were now informing us that, all things going well, her aortic valve replacement would be taking place on 15 January. This news cast rather a shadow over subsequent proceedings as I am, to quite an extent, dependent upon Helen as my primary carer. At the same time, I gratefully acknowledge that the operation can give her a whole new quality of life, after several months recuperation from the cardiac surgery.

The next time the phone rang; a doctor from my local practice spoke to me and arranged for an appointment that afternoon. The doctor I saw gave my eyes a thorough examination and she put through a referral to the eye clinic at the District Hospital. A short while after arriving home, the phone rang once again; this time, the message was to inform me that an appointment with a doctor at the eye-clinic had been arranged for 10.00AM on Christmas Day. This was turning out to be an unusual Christmas Eve and Day, but having undergone a thorough examination at the hospital, I was back home in time to continue preparations for Christmas Dinner.

Ever since my wife’s cardiac surgery seemed quite imminent, last summer, I have once again succumbed to anxiety and depressive episodes, randomly tearful and unduly angry with people and events. When I saw a doctor about this experience in August, all she would suggest was CBT as she wanted me off all my medications, not adding something else. My anxiety intensified after that visit as the medications I am taking are for the heart, following a minor stroke, for long-term abdominal problems and for pain and restless leg control. As the operation date, for my beloved, is once again imminent, the anxieties have intensified so, yesterday afternoon, I saw a different doctor who is consulting with a pharmacist and the mental health team to see if there may be a suitable course of medication etc.

This afternoon I attended the opticians, for an overdue eye test, and have been referred to the cataract clinic with regard to my right eye. So, things are moving and I’m struggling on…

A Fruitful Misery

Seems like I have a permanent ticket for a roller-coaster ride, not that I particularly requested or enjoy the experience! The journey involves states of physical and emotional health, by which I mean health shortcomings.Just as I’m getting used to feeling a dose of well-being, random pains and discomfort have a habit of leaping out to chastise me; whatever task I’m managing at that particular time, a throbbing burning pain in wrists, a sharper pain in elbows or, the nagging hollow bruised, nausea inducing, discomfort in the armpits strikes, calling an immediate halt to whatever activity is in process. (By activity I mean something akin to reading a newspaper or magazine, or maybe surfing the web on tablet or laptop: it is indeed only on very rare occasions that any of these activities are permitted as prolonged a period as thirty-minutes!). An added joy is the Damoclean sword of permanently imminent, frequently occurring, gullet, stomach and colon flare-ups.

More recently, the familiar neurological ailments have been partnered with an unrelated depressive anxiety. Some days I find myself in sudden floods of tears, concerning love, beauty and transience, fearing being alone and upset at the brevity of human life, especially as I’m now in my mid-seventies and, have become increasingly in awe at the amazing interdependence of everything in the whole cycle of life and, that nothing is wasted in nature’s economy. The primary cause of my current bout of anxiety is related to concern about my beloved OH’s impending aortic heart valve replacement operation. The operation will be of four hours duration, followed by a couple of days in cardiac intensive care then, four or five more days in the hospital.

This will be the longest period that we have been apart since our wedding over nineteen years ago. Apart from being my wife, lover, companion, confidant and chauffeur, she has increasingly become my carer. Whilst she’s in the hospital I won’t be able to visit her, owing to travelling involved. Since the onset of my chronic illness (moderate Myalgic Encephalomyelitis) even the, less than two mile, trip into town can prove emotionally and physically overwhelming, but ma belle will be in a neighbouring city some eighteen miles away. My (step-)daughters have offered to take me but, the prospect of such a journey makes me realize that I’d be in no fit state to be a bedside visitor (as I’d have to anticipate the ordeal of the return run).

A sizeable bleeding rodent ulcer (presumed basal cell carcinoma) has in recent weeks become an additional irritant and, I will shortly be attending an appointment in the dermatology dept of the District Hospital. Oh, what joys we are all heir too!

ill at ease and strange release

Strange as it may seem to some, my best, most refreshing, sleep frequently occurs after the returning daylight hours have become established. No matter how restless, torturous, or even relaxed the preceding bed-rest hours have been, any sleep attained after say 08.00hrs always seems to be the soundest. As for night’s, and when applicable daytime’s snatched sleep or rest, I have to admit that I feel truly blessed whenever I manage to emerge from the experience feeling properly ‘refreshed’, an event that may occur as often as one occasion in the week. How blissful it is to have temporarily overcome the phenomenon of ‘unrefreshing’ sleep.

After that rambling prologue, I now move on to today’s difference. Having retired to the duvet lair at 23.00hrs, last evening, I managed to snatch my first spell of sleep after 02.20hrs. By 04.10hrs I briefly attained a state of semi-alertness which was followed by intermittent bouts of sleep and waking alertness. At around 9.00am, my beloved took Piper out for his morning walk having first assured me that she would be back before 10.00am, a little earlier than my usual emergence from the bed’s hold over me. The reason for this assurance was the impending arrival of workmen at 10.00hrs to start work on re-vamping our downstairs loo.

I drifted back into the realm of sleep only to be startled back to the awoken world, by a stridently ringing doorbell, at around 09.30hrs; I hastily crawled out of bed, donned dressing gown, stumbled down the stairs and swayed giddily as I opened the front door. The workmen had arrived early, much to my beloved’s surprise, when she arrived back at 09.53, and very much to my weary annoyance. I returned very briefly to the duvet realm, before arising to a host of painful ailments affecting head, torso, upper and lower limbs. My mood, most definitely, was not of a very beneficial nature as I contemplated the prospect of minor additional exertion required to ascend, and subsequently descend, the staircase each time I required the loo during the next few days. Spastic colon and erratic bladder function conspire to ensure that the additional effort will be required on multiple occasions per diem.

As the stress of the situation took hold, simple misunderstandings rapidly amplified themselves into major crises; it didn’t take long before I found myself unloading a plenitude of expletives towards all other occupants, resident and temporary, of my immediate lebensraum.

A Quick And Yet

Painfully restless nights have been showering me in abundance of late; how I yearn for those times when bed-rest actually proved restful and, one had the joy of waking refreshed to the new morn, albeit assisted by a strong caffeinated beverage.

My beloved OH generally manages to sleep soundly, unperturbed by the thrashing of my restless legs or the wildly uttered expletives, emanating uncensored from my brain out through my mouth, as the aches and pains attempt to take total control of limbs and torso.

A supply of wrist, elbow, shoulder and knee supports remain in attendance by both bed and armchair side, never quite sure when they will be summoned into action! Much the same applies to the omnipresent box of medications. And yet …

Oh yes, there is fortunately an “and yet” addendum to the above summation of dis-ease. Enjoyment, revelling in the music I listen to via vinyl, cd and the airwaves; movies we watch both broadcast and via dvd and even, dare I utter, VHS tape. Piper, our wonderful hybrid hound, some part beagle, some part podenco (and whatever else) went into this wonderful creation that provides entertainment, love, frustration, and simple amusement. I am fortunate that at present I am able to manage an evening walk with the boy (canine variety) as we let him run freely down squirrel alley, through the wild verges of the local playing field and the adjacent grass tussocked, cow parsley, tree and sapling sprinkled, hound scented haven.

This year the birds have returned to our garden feeding stations, nothing exotic but a rewarding mix of blue tit, coal tit, great tit, house sparrows, goldfinch, starlings, collared doves and also wood pigeons, jackdaws, and bullying magpies. It has, once again, been a delight to watch the always hungry, newly fledged starlings being fed by their elders.

There’s just so much to enjoy in the world around us, just wish the sundry bodily ailments would take a vacation!

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!

The Old Familiars Return

And suddenly the old familiars return; I can’t say that they’re particularly welcome but, they do offer a distraction from more recent discomforting visitors. Just as I’d started to relax, after a few hours (as part of the last few days recurrence) suffering from problems with digestive system, gall-bladder, reflux and diverticular disease related problems, the old griping lymph nodes in the armpits, pains in wrists and elbows, returned to the fore. Having strapped up wrists and elbows, upper arms were held tightly against the torso, forearms behind the back with hands tightly clasped, in a partially successful attempt to alleviate the nausea inducing armpit discomfort.

Indigestion pains had become more disturbing as they induced sharp pains in the left hand side of the chest, evidently emanating from a renewed bout of costochondritis; frequent applications of ibuprofen gel to the rib cage seem to be alleviating that condition. In an attempt to alleviate the abdominal discomfort the doctor has switched me from lansoprazole to ranitidine 150mg twice per day. No doubt it will take a little while before any results are noticeable.

On top of these frustrations, my right knee (from which pain was alleviated as a result of an arthroscopy a couple of years back) has started grating again as I walk.  To be honest though, the recent, and current cold spell does tend to exacerbate any rheumatic / arthritic symptoms.

One could say that it’s all happening, at the moment, within my bodily being; even the dreaded post-nasal drip has returned and isn’t responding to the nasal spray. Oh the joys of living and the pleasures of old age. I’m afraid that those closest to me, primarily my beloved OH, are always on the receiving end of my tetchiness induced anger. On top of this my beloved is getting more tired as she awaits a heart valve replacement op. I realize that it has become pretty well a routine procedure these days but, I still can’t help feeling a little anxiety about the whole situation.

I do realize this post makes me seem like a real moaning Minnie but it will have to suffice until I receive, if ever, ample stamina to get back into a more regular blogging routine. Much of the time I’m able to enjoy a wide range of music listening (via CD, radio and online) and quite a lot of movie watching (via DVD and TV broadcast/ catch-up services) so, perhaps I should express a more positive message. I’m even able to take the dog for his short evening walk, with only a few health-imposed abstentions.

I don’t suppose getting older helps my general condition, albeit I’m only well into my 75^th year on planet Earth, but my emotional responses and attitudes seem to always be at odds with my chronological age, It seems like my intellectual and emotional life are still quite youthful; well, perhaps still back in my early thirties. If only my physical frame could take that leap back!

PS the use of the term familiars at the head of this post has just made me think of the witches black cat etc; if only I could cast a spell. Meanwhile the prayers of others will have to suffice.

random onset - chronic & acute

This happens far too regularly and yet, it still catches me unawares, a total surprise. This afternoon, just relaxing with my faithful pooch laying beside me on the sofa,, when a sudden griping, annoyingly discomforting, ache in the armpits, brings back the feelings of nausea. Shortly after this griping ache a throbbing pain takes over my elbows, whilst wrists ache in a manner similar to carpal tunnel syndrome.

Sometimes the application of elbow and/or wrist supports serve to alleviate the nausea sensation and, the throbbing aches gradually subside; on other occasions even opioid painkillers fail to dispel the more severe discomforting pain. Quite frequently the armpit pain occurs when I’ve been holding a tabloid size newspaper or a tablet PC for more than a few minutes; when this occurs I have to discard my cardigan as the armpit seems overly constricted but application of a shoulder support, which settles more tightly in the armpits, can sometimes alleviate the discomforting pain.

                                             ******

The first two paragraphs were written on two separate days, the usual problems, as described above, prevented me from spending sufficient time on the laptop to rediscover the document so far. I’m managing to keep posting to my twitter feed and almost keeping up with facebook posts, primarily via tablet, but concentration tends to dissipate as soon as the aches and pains begin.

Today the armpit pain came on more acutely, even though I wasn’t holding either newspaper or tablet. Donning of a shoulder support which fitted quite tightly in the armpit did distract me from the initial acute pain but, within a minute it was necessary to don wrist and palm supports to alleviate an intense, tear inducing, discomforting pain in my wrists. It was necessary, today, to resort to a couple of 50mg Tramadol.

I realize this may be much ado about nothing but, it may help to explain the paucity of posts from yours truly.

A Long Night's Journey Into Daze

By last evening, the efficacious application of sundry supports, and a small opioid dose, had brought me back into a more at ease body to contain my soul and mind. So far all was going well and an hour before my proposed bedtime I took 30mg amitriptyline along with 50mg tramadol to, hopefully, pre-empt a bout of restless legs, throbbing knees, and ultra-sensitivity in my toes.

Well, shall I let you in to a little secret; the pre-emptive strike was a dismal failure on this occasion. Within half-an-hour, of laying under the duvet, my knees were attacked by a sharp throbbing ache which, apparently, demanded of my unconscious that they should be flung out from the side of the bed in a way that switched between an unsupported taut outward stretch and, a limp folding at the knees, as calves crashed against the divan base drawers with toes trailing on the floor.

I frequently attempted to change my sleep preparation posture, laying first on one side then the other, laying on my back, on my front, and sundry intermediate stages. Suddenly, the ultra-sensitivity of my toes added to the problem; regardless of whether top, bottom or side of my toes made contact with the bedding a chinese-burn sensation caused an unpremeditated jolt of my lower limbs. After two-and-a-half hours of variable intensities of discomfort there was little chance of an imminent visit to the land-of-nod, so I picked up my tablet pc, plugged in headphones, and caught up with a couple of TV programmes. Six hours after succumbing to the lure of the duvet realm a couple of hours of light sleep took over.

A mid-morning entry into the clothed arena didn’t seem to offer much improvement. After ten minutes browsing a magazine my wrists began to ache, swiftly followed by the hollow ache emanating from the armpits. Wrist, elbow and shoulder supports were gradually donned with little sign of the discomfort easing. A dose of tramadol seemed to take for ever to kick in; a generalised discomfort hadn’t settled until some time after my beloved had returned from her preaching appointment but, unlike the previous Sunday I was able to finish dinner preparations and really enjoyed the fruits of my labours.

mutual aid society - Malcolm & Piper

Throughout the morning’s persistent discomfort, and distress, our devoted hound, Piper, never strayed far from my side, snuggling up alongside me in a truly therapeutic manner; without him my screams of frustration would have been considerably louder.

All Strapped Up and Still it Won’t Go

Some days, when everything’s apparently going smoothly, a familiar recurring symptom comes almost as a surprise. Quite what causes the symptom is a bit of a puzzle but, that doesn’t make it any less real or disconcerting. What I’m really talking about is a cluster of inter-related aches, pains and intense discomfort.

After using a tablet PC, laptop, or even holding a newspaper whilst I surf / read for just a few minutes, a nagging hollow-ache or tenderness in the armpits develops. That discomfort in itself induces a sensation of nausea. Sometimes applying elasticated supports to my elbows alleviates the immediate nausea but, far too frequently, the armpit ache is followed by pains in the wrist which may respond to the application of wrist supports. Normal, over the counter, analgesics don’t touch the pain or acute discomfort and, I often rely on a discomforted time of rest with upper-arms clamped tightly to the torso whilst forearms are stretched behind my back. Other times a 100mg dose of tramadol has proved efficacious.

                          shoulders, wrists & elbows all strapped up but still it won't go 

I only wish I could find a way to pre-empt this acute discomfort but, the only way to play it safe would be to never attempt to hold a book, paper, tablet, use a laptop, or write anything down on paper. That I will not yield to!

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.

A BODY FEELS (The Heat)

A BODY FEELS (THE HEAT)

Each footstep jolts

the ankle, knee and hip

provokes a frank response

to the humid heat

Today the weariness

extends its reach

beyond the old

familiar aches and pains

Almost as if each limb

and digit has undergone

some sauna torture.

As irritated bowel

And subservient colon

conspire against the bladders need -

bladder reciprocates the deed

and every oozing pore

Screams out for mercy

Malcolm Evison –

first hasty draft 18.50 -  23 July 2018

Fermentation and Percolation - Abdominal Joys

Wearied by humid heat, each minor task seems Herculean, even more so when it involves a trip into town. For many years now I’ve been unable to face travelling any distance but, it has become increasingly difficult to steel myself sufficiently for the very short journey into the town centre. Chauffeured by ma belle Helen it’s only a matter of 5 to 10 minutes in the car, but even that becomes quite arduous when the stifling heat seems to amplify the sensory overload of passing traffic and scurrying pedestrians both whilst journeying and on arrival at one’s goal.

Earlier this week I had to travel into town to collect my new glasses, of the spectacles not the drinking vessel kind; a short trip on a day when the heat proved overpowering to me. An additional problem, on this occasion, was a diarrhoeal flare up of my IBS. A quick visit to the toilets at the shopping mall found all cubicles temporarily “out of order”; the subsequent scurrying to a large store, and ride up the escalator, proved somewhat disconcerting as the whole abdominal area felt as if an excruciating fermentation or percolating  process was occurring.

Having reached the necessary facilities in the store both cubicles were occupied as I waited cross-legged and anxious for a unit to become available. As I’ve said before, visits into town are always a discomforting experience for yours truly but, this time, the humidity of the day alongside my turbulent abdominal spasms caused additional distress, on top of a familiar state of sensory overload.

It was really touch and go as to whether I managed to keep the appointment to try on and collect my new prescription eyewear. On the verge of a panic attack, I did manage to collect the optical item although I was more interested in getting back home than giving myself sufficient time to fully check that they were OK. Whether or not they proved satisfactory was of far less importance than the rest and facilities waiting for me at home.

Of Resting and Sleeplessness – postlude to Stress of the Normal

Come early evening and tiredness verging on exhaustion takes passing hold of me but, as a notoriously bad sleeper, I hoped not to drift off at such an early hour. Of course resting / relaxation, in the form of a movie, was the order of the evening; my usual evening entails the playing of CDs and / or DVDs at some point, rarely anything too taxing on my limited resource of stamina. Admission time; I did sleep through some of the movie but, come the time when my beloved was ready for bed I was feeling wide awake. I wonder if my readers will understand the sensation of being simultaneously wide-awake and yet 95% drained of energy both physically and emotionally.

You will have noted that as I headed to the bedroom, to join my beloved, the signs were not exactly propitious. Those forebodings were proved correct! As I prepared for bed a generalised sense of discomfort / dis-ease overwhelmed me and, the night turned out to be one of tears, screams and bellowed expletives.

Restless legs took control after an initial burning sensation of sore tenderness took control of my toes, and that alongside of a tortuous throbbing ache in both knees and hips. Within a short time, a tenderness of the armpits lymph nodes began to rage alongside screaming aches in elbows and wrists. My mind seemed to be preoccupied with a relentless darkness as I sought for comfort and rest.

The darkness of the room created an overwhelming sense of isolation, in spite of the fact that my beloved was soundly sleeping beside me, almost oblivious to my cries to and against the Almighty as I tossed, turned and struggled to find a state of composure. The blessed, albeit temporary, release of sleep took many hours to attend to my needs.

Another day of rest is desperately sought and, I little care whether it’s opioid, prayer, or straightforward Mother Nature assisted.

just the start of another normal day

Where to start; how to define; what words can be used to describe another normal day. I wish to God I understood what is a normal day? Even my days, curbed by health restraints, proffer plenty of variety in terms of food ate, music listened to, DVD’s  viewed, even times of dining may vary, yet somehow they seem to belong to what could be considered a normal day.

This morning I arose from the duvet realm shortly after 10.00hrs, earlier than some but not much later than most days. Even before I left the bed, a throbbing ache in the sides of both knees caused a little discomfort which, strangely, felt like a painful hollowness between upper and lower components of the lower limbs. Nothing unusual there, apart from the degree of ache and discomfort, for this time of day; a mug of coffee and a bowl of cereal were definitely needed. Of course Piper, our beloved hound, greeted me with tail and rear portions wag and sway as he carefully directed me towards his doggy treat store.

So far so good, it’s just another normal day. Having breakfasted I settle down to read the tabloid-sized i-newspaper for fifteen minutes or so before acing wrists cried enough. After a little doing-nothing break, switched on my android tablet, for a cursory visit to twitter-land and newspaper summaries, surfing for about twenty minutes. Another caffeine intake required to keep me awake, followed by a further few minutes with the i-newspaper, only to have a discomforting sensation, tenderness of the lymph nodes, in the armpits. Time to move to the larger sofa, put my legs up and allow the music from radio 3 to wash over me; Piper swiftly leapt over my lower limbs to snuggle beside me.

Not many restful minutes passed before a throbbing discomfort in my toes demanded I put  some pressure on the soles and arches of my feet to somehow eliminate the toe-tingling sensation. Next, almost as a matter of routine, pains from the armpit had extended a nauseating discomfort to whole of upper limbs.

Yeah, I suppose it is just another normal day; shortly after 13.00hrs my first resort to painkillers (tramadol 2x 50 mg) since late yesterday evening (on that occasion alongside amitriptyline) as I prepared for my return to the bed zone. Of course by this time I have recourse to my usual pre-meal medication as I anticipate a little lunch-time bite to eat.

Amazing how hard one has to work in order to be busy doing nothing; for now I revel in the music zone, forget my minor worldly woes. For music, love and life, I give thanks. Just the start of another normal day!

ACHES and GAINS

Just when you think you’ve recovered from the roller-coaster ride, a sudden smack of reality makes you realize that you’ve stepped onto the ferris wheel and this time it’s supercharged. Stomach and oesophagus have never felt so close, a moderate underlying nausea takes on a more prominent role. The head feels giddy as if too much time has been spent on the ‘waltzer’, and knees, ankles and elbows throb as if stray balls from the coconut shy have found fresh targets.

You’ve maybe guessed it, I’m talking payback; a reasonable period of (partial) remission had almost persuaded me that life had been restored to normality. As I’m now into the fifteenth year since my collapse, succumbing to ME (myalgic encephalomyelitis), one would think I’d know better than to miscalculate my reserves of stamina. I’m not talking of any undue exertion, just twenty minutes of mowing the lawn with an electric powered mower seems to have knocked me back. Mind you, this additional exertion came at a time when I’m just coming to the end of a course of antibiotics and antimicrobials.

These additional medications had been prescribed as a result of a visit to A&E at the district hospital last Thursday evening, following a flare-up of diverticulitis (and probably gall bladder as well). There have been many occasions recently when I’ve felt as if my moderate ME had turned to a milder form but then, brainfog, alongside excruciating discomfort in upper and lower limbs, and nagging pains variably dispersed around the torso, randomly exert their authority.

Putting those ailments aside, I am fortunate that I am still able to enjoy listening to a wide range of music (via CD, radio and vinyl sources) and am generally able to accompany Piper (our beagle – podenco  rescue dog) and my beloved OH Helen on short evening walks. A few years ago there were occasions when it seemed / felt like an effort too far]just to walk the few yards to the corner of our road. I really miss it when I’m not able to manage these short walks but the love and attention, received and given, by Piper compensates more than a little, and I’m still amazed at the therapeutic value of this charismatic canine.

An additional source of joy is provided by not infrequent visits from our grandson Alexander, now in his ninth month of bringing and receiving an abundance of smiles to the house. Piper is intrigued by Alexander, even though he’s never sure of how to take the infant’s reciprocal interest; the boy stretches out to feel / stroke Piper but has already managed to grab his tail on one occasion as well as being drawn to his ears (always a sensitive part of the pooch’s anatomy).

Night and Day and ... on and on

A night, plagued by both restless legs and a kind of strangulated tenderness emanating from the axillary lymph nodes, found me more exhausted on arising from the duvet realm, shortly after 10.00am, than I had been when I got myself into the bed 11 hours earlier. This did not bode well for the ensuing cold and damp morning and afternoon; that sense of foreboding proved quite apt.

Aches in wrists and elbows forced me to lay both laptop and tablet pc’s aside as a nausea inducing hollow ache in the armpits took control. I removed my outer garments and applied elbow and wrist supports in an attempt to alleviate the symptoms. The discomfort intensified ….

Anyway, the following poem resulted from this experience.

Poem and illustration both by yours truly

still rambling on ... and further words

Life races by, with a generous sprinkling of love, received, given and shared as the most vital portion of each day. I am blessed with a catholicity of musical taste, ranging from early music, through classical, romantic, all the way to contemporary; my taste in jazz extends from traditional New Orleans to freeform and experimental sounds. An appreciation of popular music, from the great American songbook, through folk, blues and rock, also provides me with much auditory pleasure.

Admittedly, my listening to music for the past several years is confined to vinyl, cd, radio, mp3 recordings, rather than the “live” experience. Since 2003, when I succumbed to ME (myalgic encephalomyelitis) I have been unable to cope with theatre, cinema, concerts and gigs, and rarely venture far from my home as shopping, travelling, and crowds, easily result in sensory overload. I am fortunate enough to manage an evening walk with our rescue dog Piper, which far exceeds my expectations / abilities from a few years ago. Piper both provides and receives an enormous degree of therapeutic affection and attention.

My greatest blessing is the love and support of my beloved OH, Helen, who manages to put up with me, even through my far too common periods of pain and frustration induced foul moods and vocal declamations.

Anyway, all this is by way of an intention to apologise for the irregular postings on my blog.

Even when postings are sparse, on this particular blog, you may well find some of my poetic utterances on my poetry and prose-poem blog Mal’s Factory – for those who don’t click on links, it is to be found at https://malsfactory.blogspot.co.uk