Are Pharmacies usually inept?

 

Since last Friday, owing to the dilatoriness of my local #DayLewisPharmacy, I have been without my usual anxiolitics and twice per day beta blockers which were on a prescription I ordered from my GP on 20 August. From tomorrow morning I will be without my twice per day blood thinners. The pharmacy never answers phone calls and, yesterday I had to wait, discomfortedly, for over 30 minutes, in a queue to speak to the sole person at the desk in the pharmacy who thought the items would be received by them and delivered to me today. It is now 16.00 hours and they have not yet materialised. Today I have been quite light-headed and more unsteady on my feet than usual so, it came as no surprise that my blood pressure was riding extremely high. Can pharmacies be struck off for ineptitude, if so I have a nominee.

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.

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.

Lifes little trials - always at the ready

And today the giddiness /vertigo returned (see post ‘The Eye of the Storm’ http://sinnaluvva.blogspot.com/2018/08/the-eye-of-storm-of-health-non-well.html ), the top half of my head apparently heading for the ceiling as my legs quiveringly collapsed me back onto the sofa. Torso, arms, hands, and feet shivered whilst legs trembled, in some kind of fearfully panicked response. Of course, my spastic colon ensured the lavatory was flushing overtime; strange how life’s little ailments never seem to attack alone!

These events occurred just when I’d been quietly celebrating the overcoming of a wretched cold, which I’d had to endure for three weeks. There seems to be a lot of bugs about this year, perhaps there always are but, we only become aware of them when we join the legions of fellow sufferers.

Today I was fortunate to get an urgent appointment with a nurse practitioner and, she was able to arrange an appointment for tomorrow with Dr Desha who will apply the Epley manoeuvre to treat BPPV(to try and shift the crystals in the inner ear, which are apparently a cause).

The Eye of the Storm – of health & non-well-being

The general state of my joints, muscles and general viscera this morning (Tuesday) could best be described as disconcertingly enervated. At least last night granted me a little more sleep, albeit rather unrefreshing, than was the case on Sunday night. On the latter hangs a story.

****

The story continues from my previous post.

Thursday morning I duly attended my appointment with a locum doctor at my usual GPs practice. The symptoms of either-or/ both-and gall bladder and diverticular infection weighed heavily on body, mind and spirit; either cause being an additional concern on top of my familiar chronic illness symptoms.

The doctor had me lay down as he proddd and poked my abdominal region, frustrated by my inability to either be or feel relaxed. When I started to sit up, post-examination, I was overwhelmed by an extremely acute vertigo type attack. Either the room, or the top of my head, spun violently around and a sensation of either falling to the bottom of a vortex, or that base/floor rushing up towards me, made me feel quite faint and nauseous. The GP advised me to lie back down for a few minutes before attempting to sit-up again. Next attempt at sitting upright produced the same sense of disequilibrium as I felt forced to throw my torso back down. A few more minutes rest were required as my heart rate was greatly elevated.

Once a degree of stability was restored the physician seemed to then ignore these vertiginous episodes as he prescribed a course of antibiotics for suspected diverticulitis. He added that I had no immediate need to obtain the prescribed medication unless the smptoms intensified. By Saturday lunchtime the diverticular symptoms receurred with a vengeance, so my beloved headed across town to an open pharmacy to obtain the medication and I duly started the prescribed course.

On Sunday lunchtime, my beloved having returned from taking the service at Trinity, I had dinner peparations well underway; as I stood up again to check on the cooking progress, a violent vertigo sensation once again overwhelmed me and, my natural panic response brought on a sense of tightness across the chest.

As the episode gradually subsided, Helen drove me across to A&E at the District Hospital, thinking that it was perhaps a recurrence of the labyrinthitis, to which I had previously succumbed some 15 years ago, and on that occasion succesfully treated/controlled with medication. We arrived at A&E, where probable waiting time was estimated at 4 hours, shortly after 14.00hrs. Not long after arrival my blood pressure, heart rate and temperature were checked by a triage nurse before returning to the waiting area.

When I eventually got into a cubicle, to be seen by a doctor, a nurse took some blood samples, rechecked blood pressure and wired me up for an ECG. The A&E doctor had me lay down whilst examining my abdomen listening to my chest as I took deep breaths in and out the, after a few minuteswhen he asked me to sit up slowly the vertigo recurred. Even after resting a little longer the same thing happened again. He also noted that my heart rate was considerably elevated and, was reluctant to let me go home. The doctor then went to consult with more senior staff.

By 18.20, I was transferred to CAT ward and, within a couple of  a hours moved to a bay in Acute Medical where the environment was somewhat more settled. I’ve often felt that Hospitals are those paradoxical places which are both the worst and the best place to be confined when you’re feeling unwell!

At 01.50 on Monday morning, a duty doctor came to examine me and, by this stage things had settled down a bit as I’d rested. A senior doctor came to check me over at about 11.30 and felt tht I had stabilized sufficiently to be discharged, and duly prepared notes for my GP practice for follow up, confirming that vertigo/labyrinthitis (middle ear infections) were the primary suspect and suggested that they may consider repositioning manoeuvres for BPPV. No new medicines were prescribed.

Ma Belle chauffeuse, aka Helen, my beloved and my OH, came to collect me and, it was wonderful to be enthusiastically greeted by our gorgeous hound Piper as we went to the car. We were back on home territory shortly after 13.00 and much rest was needed. It was really good to both listen and relax to the music on Radio 3 (classical) an option not available on the over bed radio in the hospital.

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.

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!

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

EPSON WOES - just for the record

Having made a grievous error of purchasing a new photo printer (older ones now best for document printing alone) I found myself damaging my health (and deeply upsetting my beloved) in trying to set up the new machine - the following is a transcript of my communication via Twitter with the printer company - just for the record ....

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

EPSON WOES – just for the record

Malcolm Evison‏    (tweeted)

@sinnaluvva

 Dec 16

More

@EpsonUK took me two hours to connect to new XP55 machine - wouldn't reognize wireless or ethernet - after  a while did accept fixed IP Address via ethernet. Never had such problems with any printer connection over many years. Displeased!

Epson responded to my tweet:

Epson UK‏

@EpsonUK

 2h 2hours ago (Dec 18)

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Replying to @sinnaluvva

Hi Malcom, Sorry to hear that, If you require any assistance please follow our profile and DM us your query. We will be happy to help. Kind Regards.

DM to Epson as requested 2 hours earlier 1920hrs 18 Dc 2017

setting up my new Epson XP55 took ovr two hours on Saturday, would not connect to wireless or ethernet Eventually had to set up a fixed IP. Never had a machine with these problems over many years and with a chronic I'm totally knackered by the effort. What is wrong with your machines. Suggestion of temp USB connection to aid wireless set up totally useless but, only USB cable I had to try was an Epson one from over a decade ago - maybe not right now - (that printer collapsed, as did another Epson in just over a year's light use) don't know what's wrong with me that I gave Epson another chance.

addendum DM at 2000hrs

sorry, I omitted the important word "illness" after word chronic. And, having paid £83 for 1 set of XL inks ( I misread thinking it was 24 cartridges) I think you should supply a technician gratis to set up your machine with its set-up inks! *

*[Not part of transcript - I usually rely on compatible inks but was hoping for something more impressive!]

19 december from Epson UK (below)

Hi Malcom, I am very sorry that you are unhappy with your Epson XP-55, It is never our intention to disappoint customers in any way and I would like to apologise for any inconvenience caused. Were you able to connect the printer in the end? Is there anything we can do to assist you?

my response to Epson UK via DM

I don't understand why it can't find a wireless signal or an automatic IP address via ethernet - I now have it situated in an upstairs room close to our Virgin hub (100 Mbps) - never had these problems with HP or Canon printers - I've even been able to troubleshoot others problems. Unfortunately, constant re-attempts at setting up are not at all conducive to retaining my already low stamina levels (ME & FM sufferer since 2003).

plus my DM

its current position is of course most inconvenient!

plus my DM

After another unsuccessful and exhausting attempt to achieve a wireless connection to your product, which leaves me shattered, I am more than ever regretting my purchase. IF A USB CONNECTION WOULD ASSIST IN SETTING UP THE WIRELESS CONNECTION (as your set-up disk suggests) WOULD IT NOT BE THE DECENT THING TO DO TO SUPPLY (GRATIS) THE APPROPRIATE USB LEAD. There is definitely something odd in the way your machine is constructed.

CHANTING PSALMS out of ANGER and FRUSTRATION

Currently, my temper is running on a very short fuse, swift to anger but sluggish in calming down. At its worst I end up upsetting those whom I love and even, at times, keeping temper simmering long after the immediate (sometimes trivial) cause for letting it loose has disappeared. There are many times my anger is justified especially when I look at the policies pursued by our Tory government, that of the US of A and, indeed, the governments and people of all nations that punish the vulnerable and worship private wealth. Very little regard seems to be paid to the unethical practices that have enabled that wealth accumulation in the first place!

My less justified outbursts usually occur when I am in rather acute pain and discomfort; one word out of place, from another party, can so easily release a vehement stream of verbal chastisement and abuse from yours truly. These are times when my response / reaction leaves me ashamed and guilty for the distress which I may have caused.

Having expressed that mea culpa I can move on to the more regular occasions when the air around me becomes filled with expletives and near blasphemy. The frequency with which limbs and torso are acutely and crushingly subjected to intense discomforting pain has recently increased, reverting to that state I experienced not long after ME (myalgic encephalomyelitis) first held me in its thrall. The main trouble is that the discomfort strikes so suddenly, whether in wrists, elbows, knees or elsewhere on the torso, it almost inevitably transforms the axillary lymph nodes into a discomforting, nausea inducing, dis-ease. During the night, as I futilely hope and pray for refreshing sleep, restless legs, painful feet, and lymph node tenderness compete for my attention, the only reaction that rears its head is a ferociously spitted out “Jesus Christ” followed by a torrent of expletives as I vainly attempt to find a comfortable position either in or out of bed.

This morning, as I checked out my Facebook homepage, I stumbled upon this quote from Blake Chastain – “Sometimes swearing is just a minimalist psalm”.

So, even when I find it difficult to pray, I find myself enthusiastically chanting Psalms.

In the Book of Psalms there is so much anger and despair amongst the ritual hymns but, none as succinct as the involuntary F-word that spews from my mouth when pain and discomfort is at its keenest.

On the Opening and Closing of Doors

ON THE OPENING & CLOSING OF DOORS

Well, life has certainly been eventful, and frustrating, since my fall (http://sinnaluvva.blogspot.co.uk/2017/09/a-fall-becomes-set-back-and-shaggy-dog.html & http://sinnaluvva.blogspot.co.uk/2017/09/gratitude-for-nhs.html) but, nothing really much in any way I could regard as positive. Because my PPI (omeprazole) was not compatible with the clopidogrel, the GP switched my prescription back to lansoprazole; I had taken lansoprazole for a number of years and had discovered the most effective dosage was 30mg twice per day, morning and evening. It, therefore, came as something of a surprise to find that I had only been prescribed 15mg once per day.

The new medication regime began on the 19^th September but, so painful and discomforting had my GORD and IBS symptoms become, that by the 27^th September it became essential for me to have an emergency appointment at my GP surgery. The appointment was with a nurse practitioner who duly increased my dosage to 30mg once per day.  Even with this dosage, I still had to resort to a strong antacid each evening.

Meanwhile, I was twice proffered an earlier appointment (in a saga which began a few months back) with the surgeon to discuss removal of my gall bladder but, I automatically declined as I now needed to get into a pattern with the amlodipine & clopidogrel and, I realized that if an operation was to take place I would need to be off the clopidogrel for around one week.

By way of diversion, we have an additional resident chez nous. Beth, the eldest of my two step-daughters, was discharged from hospital in York on 10^th October following a bicycle accident on the 3^rd. She has a fracture in the neck of her humerus, necessitating immobilizing of her right arm and plates in her jaw at the sites of two of her three jaw fractures. This latter condition means that she is only able to manage soft / pureed food. My beloved OH has to help her both to dress and to bathe / shower.

Eventually the pre-arranged appointment, on the 23^rd October arrived and ma belle chauffeuse accompanied me to the clinic at the District Hospital. The doctor soon explained to me that as I had recently had a stroke, albeit a minor one, she would be unable to carry out the operation as the anaesthetic required could trigger a further more severe stroke and, although I could apply for referral after six months of reasonably good health, she personally didn’t seem much in favour of this, as she felt there would still be the risk of a more major stroke. When my beloved asked the surgeon what should happen if I had a further infection of the gall bladder, she suggested that antibiotics, albeit with the possibility of increased antibiotic resistance, were much preferable to a risk of paralysis. She was of course aware of my family history [my mother suffered a major stroke within seven days of experiencing a TIA – spending her remaining years with total paralysis of one side of her body – when she was of an age only marginally advanced from my current state of being].

Whilst I was somewhat relieved that the doctor hadn’t pussyfooted about the rather stark options, it did seem to emphasize the whole mortality issue as, later in the day, I began to feel a sense of desolation regarding an apparent futility of existence. I wondered, for a while, if I was reverting to a state of depression! In the clear light of a new day, chronic illness notwithstanding, I was so blessed with a loving wife and family, a catholic taste and enjoyment of various musical genres, literature, fine arts, and a faith that never lets go of me even when belief has evaporated.

A Fall becomes a Set Back and a Shaggy Dog Tale

Yesterday’s events brought back a memory from 1962 when I was a student nurse in Exeter. I especially recalled a young man on the orthopaedic ward who had a talent for inappropriately releasing the cot sides from his bed. He was recovering from an above the knee amputation but, to his mind and nervous system, the phantom lower limb was far too tangible. Eventually he became an expert user of crutches as he scooted around the ward and, he was soon performing acrobatics on these supports. This young man later returned, on several occasions, to offer encouragement to children both preparing for and having undergone lower limb amputations.

These days with all my sundry aches, pains and other ailments, I envy that resilience. What brought those memories to the fore last night was my having a fall, in the living room at home. I’d just decided to go for a shower but, after the first step I suddenly felt as if my right ankle and foot had just disappeared. No sooner had the thought occurred than I plummeted to the ground, my head landing on the dog’s snout. The dog was on the sofa near the door and, as I fell I heard a growling bark very close to my ear. That growling bark was the dog’s defensive call as this figure fell directly in his direction.

My beloved’s immediate reaction was a desire to drive me down to A&E at the District Hospital but, as I still had no sensation of there being anything below the calf of the offending limb I was reluctant to venture out. Whereas the young man, referred to in the opening paragraph, fell because of the imagined / phantom lower limb. My fall was because I had an intact limb but had suddenly lost all sense of there being an ankle and/or foot there.

We phoned the out of hours doctors number from which we were referred to the 111 service, (? against using the word service), to whom my wife first spoke about me having a fall due to loss of sensation in my foot and ankle. They then spoke to me and went through their usual script – attempting to detect a stroke or the like – but I became increasingly frustrated as she questioned whether I’d had the numb sensation before I got up to walk, despite my constant reiteration that the loss of sensation and my fall were a simultaneous occurrence, even though the numb sensation was still present. She then asked if there was any bleeding and I mentioned I’d had a little bleed from the base of the ear but, that was probably due to falling onto the shocked dog. There were also the usual questions about whether I was running a temperature, “place your fingers on your chest do you feel as if you’re running a temperature” was their suggestion. I explained that in my case I’ve been diagnosed with an infection by a GP even when there was no sign of me running a temperature. Ever since I succumbed to ME (myalgic encephalomyelitis) some 14 years ago, my body thermostat has proved somewhat erratic).

The person on the switchboard then returned to the stroke detection questions – can you raise your arms above your head, can you smile, is your mouth twisted – to which I replied that I didn’t think it was anything like a stroke, having witnessed my mother when she had a major stroke and several TIA’s but, it wasn’t like what I was experiencing. I was just concerned about the loss of sensation in the right foot and ankle and the consequent fall which had proved most unnerving.

I eventually became rather fed-up with the inane repetition of questions I’d already answered from a person who on their own admission had no medical experience, nursing or otherwise, but she did have a list of questions she had to ask. Eventually in frustration I hung up. A short while after that, they rang back to say that there was an ambulance on its way. The ambulance duly arrived expecting to see a dog-bite victim who’d had a stroke!

The paramedics most conscientiously carried out tests on blood sugar, blood pressure, pulse rate and a couple of ECGs. Blood pressure was rather high and the one carrying out the tests did at first wonder if there was a sign of AF. They suggested that I contact my GP on Monday to arrange for a review.

The setback, referred to in the posts title, is that temporarily at least I’ve had to once again resort to the use of walking sticks, albeit as a precaution against a further fall. The shaggy dog tale / story is I believe even more obvious.

 Even an hour after the fall, as feeling gradually returned to my foot, it felt as though I had a crepe platform shoe on that foot, whilst the evidence of my eyes and the rest of my nervous system reassured me that my foot was actually touching the ground.

There was a time when calling my out of hours doctors number would put me through to the out-of-hours doctors clinic at the hospital. There also used to be a service called NHS Direct which had a far higher proportion of medically trained staff dealing with enquiries than is apparent in the 111 service. After this experience I’m rather pleased that for many of us it is, at present, still possible to have a face to face appointment with a flesh and blood GP even though the waiting time is sometimes a problem. I have never felt much adept at communicating with a telephonically disembodied voice, especially one that is so obviously reciting questions from a script!

Of Conversation and Being Wallopped

Another shattered day, or should that be another day of shattered tiredness; perhaps a tired shattered-ness will suffice. Drained, wrung-out, exhausted; none of these quite hit the mark, although I feel quite walloped out by all of them.

Just working out the cost of spending time arguing, discussing, with an old acquaintance! Today is the 13^th August and, the incident to which I refer occurred somewhere in the hours between 11.00 on 1^st August and 15.50 the following day.

It was something of a shock to discover how Neanderthal the political thinking / imagining of my old friend had become, since he fell under the spell of the Daily Fail. Once he had a mind but, now, I began to wonder if that was a false memory. Only when the conversation turned to matters philosophical, theological, and even metaphysical, did the verbal exchanges become rewarding.

Once upon a time my mind and spirit revelled in such conversations, with friends and acquaintances, not infrequently running through from late evening to dawn. In those days, the conversation could be accompanied by a bottle or three of vino, and a few mugs of tea to prevent dehydration. Nowadays, a mere few hours of chatter and discussion, even in the absence of alcoholic refreshment, seems to overwhelm my physical and emotional resources. Two days after our late evening chat a painful exhaustion,  from which I’m still recuperating, hit me.

For a couple of weeks before the visitor arrived, I’d been having to resort to wrist, palm, and elbow supports, attempting to alleviate the nauseating discomfort, which frequently seems to emanate from the armpit lymph nodes. At its most discomforting phase, as I curl up, clasping my upper arms tightly to my torso, foul expletives emanate from my vocal organs as if seeking a magical miracle of healing, before the flow of tears erupts. So, perhaps, extended conversation is not the sole cause of my current exhaustion.

For These Small Mercies

For These Small Mercies (we proffer thanks)

Today, so far at least,

is one of gentle shattered-ness;

welcome relief

from yesterday’s griping

pain and aches.

An ever present undertow,

of generalized discomfort,

still leaves the space

for a richly varied range

of sensory attacks.

Will it be muscles,

joints, gastritis, or other

less easily defined

components of

the neurological kind.

Today at least

I have enjoyed a time

of gentle relaxation,

an ease of body

and a calmer mind.

                                          Malcolm Evison

                               20 July 2017

this post also appears on my poetry blog

Mal's Factory