mals me jottings

8/13/2019 Mals ME Jottings

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“Stumbling through" - a brief outline of Malcolm's encounter with

moderate M.E - provides a context for the other (almost random)extracts from his weblogs.

He has deliberately omitted dates from most of the original postings,

being all too aware that sufferers from this dreadful neurologicalillness frequently experience an erratic pattern of remissions and

relapses.

His journey continues.



STUMBLING THROUGH •-

an encounter with Moderate M.E. _______________________________________________

For me, the problem is to truly know when it all began as, it’s only in

retrospect (with the help of my beloved) that I’ve been able to recognize for just how long things had been rather out of kilter. For some years I’d been

having problems with a spastic colon, an aching tenderness in the armpits,tortuous recurrent pain in the wrists, elbows, shoulders, lower limbs … you

name it, I’d got it.

Through all this I continued working full-time, walking to work and spendinga lot of the time there on my feet. Although I no longer had the physical or

emotional stamina to continue with my artwork, I managed to retainsomething of a social life (even when I didn’t feel like it!).

My other half thought it would be a good idea to switch to part-time work

and, that would then perhaps mean I could find time to get on with my

paintings. Even though I frequently spent the rest of the day in a collapsedstate, when I got home from work, rather than getting on with the artwork, I

really enjoyed the job. On several occasions the secretary at the church,where I worked, suggested that I really should take some time off as I didn’t

seem well enough to be there.

By 2003 I seemed to be constantly on the verge of a fluey type cold,accompanied by rheumaticky aches and pains, and labyrinthitis. I frequently

found myself having to lie down and rest between and during my caretakingtasks. The glands under my chin / top of my neck constantly felt tenderly

painful and, I became very tetchy about things, trivial upsets becomingmajor calamities. I was no longer able to concentrate on reading, previously

one of my great pleasures, and found myself floundering at times in trying toremember the name of some everyday items. Although I seemed to be taking

plenty of rest, my sleep pattern became increasingly disrupted and, I forgotwhat it felt like to feel refreshed after a nights sleep. I’m sure the chronic

night-sweats and searing aches in neck, torso and limbs didn’t help.

Mid-November 2003, I walked (or more correctly stumbled) out of my workmid-shift, unable to cope anymore. I didn’t visit a doctor for the next couple

of months wondering how, if I couldn’t explain how I was feeling to myself,

they could possibly understand. Apart from this I could no longer ventureinto town, or even the local shops, as I seemed overwhelmed by all the

auditory and visual stimuli ( the lack of the necessary physical and emotionalstamina didn’t help either).

When I did eventually see my GP he suggested it was “something post-viral”.

Numerous frequent blood tests followed, alongside consultations with theendocrinologist and the ENT consultant. My tetchiness and weariness both

seemed to increase, indeed anger became quite a prominent emotion (thatwas a big shock as I’d always been considered laid-back and easy going). My

GP then decided that anti-depressants could be the answer and, I wasreferred to a psychiatrist. These consultations were obviously leading

nowhere as the psychiatrists saw no sign of depression but, I was able to get



a referral to a physiotherapist attached to the mental health team who

treated (and continues to treat) me with acupuncture, initially for paincontrol but also to boost my energy levels. Incidentally, prior to this referral,

the physiotherapist (herself an ME sufferer) had read some of my blog postings and had no doubts about the nature of my condition.

The physio loaned us a copy of the Canadian Definition of ME/CFS and, to the

surprise of both my beloved and me, my “unusual” assortment of symptoms(or should that be assortment of unusual symptoms) were all to be found

therein and, I found myself reluctantly able to tick all the boxes. •It was onlysome 12-18 months after I’d finished visiting the endocrinologist that, my

GP finally disclosed that the said consultant had proffered a diagnosis of Chronic Fatigue Syndrome.

Crisis had seemed to follow crisis, a classic “one step forwards two steps

back” scenario. Eventually, in 2006, I was referred to the newly established***Chronic Fatigue Unit at our local hospital and, apart from some veryuseful

(although initially arduous) breathing exercises, they helped me with mypacing. Having expected to be “pushed”, I was somewhat surprised whenthe senior OT told me I had to slow down, as I was still pushing myself too

much! It seemed odd that, when my activity levels had already been morethan decimated, I should be told to slow down!

I still manage to get my pacing wrong at times, especially when anadrenaline rush assures me I can do more, and I’m all too familiar with the

post-exertional malaise when I get it wrong. Overall 2007 was a time of progress, one in which I managed to get away for a holiday* for the first

time in several years. Subsequent years, however, have seen a return to apattern of remission and collapse (just steering clear of a total relapse); the

most disconcerting feature, currently, is an all pervasive feeling of uncertainty as to whether any new ailment / site of pain and severe

discomfort is part and parcel of the underlying condition or symptomatic of an unrelated illness.

Malcolm Evison

* although that feat in itself demanded “payback”

*** sadly the unit later resorted to the discredited Psych treatment utilising CBT &GET



Truly alive

Retire to the duvet realm shortly after 10.00pm, re-emerge shortly after9.00am, a remarkably early hour for yours truly. Dressing gown be-decked, switch on the PC for a little idle surfing, feeling rather washed

out and jaded. Somehow the time just scurries by, surprising in an era of idleness. Contemplate taking a shower but, uncertain as to whether I cancope with the effort, return to the desktop and continue to get nowhereslowly. By this time a serious debate with oneself occurs, the topic is thepros and cons of showering.

By 11.30am, I succumb to the lure of the shower. Sheer luxury as I sit inthe shower; I rub my face almost gleefully, watch the water flow over myweary limbs, the warmth seems to alleviate the pesky muscular aches

and pains with which I share my daily journeying. This is bliss, it almostfeels like something I should feel guilty about; it takes quite some timebefore I even contemplate the washing process, it’s almost as if in thesemoments time has stood still and I’ve entered some kind of sublime ec-static state. I start to count my breaths, a kind of reassurance that it’snot quite simply a dream; all is calmness!

There once was a time, which I find hard to believe, when showering wasa straightforward mundane routine, neither pain or pleasure. Next, there

was a period when I could only take a shower when my beloved wasthere to support me, an omnipresent giddiness / light-headedness madethe shower a most insecure place for me. Things became somewhat easi-er once my beloved obtained a shower seat; once that was in situ, thetask became far less troublesome, although for long enough it still proveda chore. I still found that by the time I emerged from the soaking, andtowelled myself dry, a half-hours rest (minimum) was required before Icould consider getting dressed.

Anyway, that’s the past and this is now. I’m still basking in the afterglowof that serious pampering, provided by the shower unit. The muscularand joint pains are returning but, I am still able to revel in observing thesun blessed blue skies. Today I am truly alive.



RETURNING HOME FROM BEING THERE

An endless numbness, a dull sullen hanging sense of nausea and, barely the energy to

read a single word, listen to a note of music; if only I had the stamina to put athought together it would probably turn into a single-syllabled question. The queru-

lous word would, I suspect, be more on the lines of “What” rather than “Why”.

I’ve long since given up on the existential / metaphysical why; more an exercise infutility rather than to proffer any result. “What” keeps the world alive, “why” seems

more like an evasion.

Well, that’s yesterday dealt with; today I have returned to me. The precedingdays, and nights, had been dominated by intensely excruciating pain, rang-

ing from the numbing tourniquet, to the slightly blunted arrow; the bone andmuscle crumbling ache in combat with those swiftly-fleeting nerve-tingling

darts that seem to take one’s breath away; a kind of Topsy-Turvy Terpsi-chore:

Dance rules over all – it prevails against reason, common-sense and substantial por-tions of ritual belief. Trouble is that, we are never in control; I am currently in thrall

to a kind of voodoo dance –nature’s response to a crushing debilitating pain scenario.

•When all else fails, randomly fling limbs in whatsoever direction they feel like; if itcauses further discomfort then that adds a whole new terpsichorean overlay, disclos-

ing hitherto undreamt of fraught sequences of space displacement.

On Monday my pain-killing medication was changed, to a 3 day slow release

opiate patch. Having applied the patch, late afternoon, my familiar discom-forted restless night was in attendance, so nothing different then but the fol-

lowing morn was quite a different proposition. A total inability toconcentrate, a generalized dull ache underlining the spasmodically erupting

specific sharp pains; all was eventually blanketed under a heavily nauseaspiced• airless cloud of unbeing, crushing a body wracked in turn between

hot and cold shivering sweats.

Needless to say, all the remaining patches have been returned to the pharma-cy and, my routine has been switched back to Tramadol, this time of a non-

modified release type, to enable me to remain in control, modifying the dos-

age as necessary. Meanwhile, I’ve once again been referred to the hospitalfor further investigative work.

The 18 hours respite, including some ‘real’ bed rest, between removing the

patch and taking a further pain-killer, has served to enhance my appreciationof the home environment. For the first-time this season, I was aware of the

seasonally decorated dining table, and the various Christmas ornaments andtinsel sundrily scattered around our abode. This awareness of one’s habita-

tion, the taste of food, the sound of music and always one’s loving compan-ion is a gift to be truly celebrated. The return from a pain-riddled drug

addled stupor makes me feel like the fabled Prodigal Son; although at heart Iam always aware of the love that surrounds me, it’s good to receive a whole-

hearted reminder, for one’s abode to find it’s rightful status as Home.



Plumbing the heights and scaling the depths

A dull, numb, lightly throbbing pressure behind the eyeballs; a leadenache above the eyebrows; a general sense of hollowness within the skulland torso – the kind of discomfort that it is so difficult to express. Today,

this has taken pole position against the competing sharper, sometimesexcruciating, pains and discomfort emanating from the sciatic nerve.

It’s extremely difficult to formulate a table of aches, pains and discomfort; how does a constant low key gnawing, of a bruisingkind, compare to an experience of an acute electric shock? Cannumbness in any way be correlated with a more instantly sharply stinging sensation?

What does one express on a visit to the GP?

In my case it’s always the (perhaps transient) currently preoccupyingdis-ease that is foremost in the more general catalogue of sensations;the ongoing symptoms of a chronic condition are rarely raised. These(permanent) discomforts are always least apparent when one has thephysical and emotional stamina required to make, or permit my belovedto make, the appointment in the first place. I am fortunate with my GP’s,that they generally give me the time necessary to make the point but,

even so, there are always the omnipresent discomforts that I don’t wantto bother them with.

I suppose that the recent disabling excruciating pain, caused by a herniat-ed disc, so overshadowed my regular discomforting companions that, hadI been able to overlook the surface anguish, I could have imagined my-self as being in the best of health.

The snow, outside of course, reflects the sunshine’s dazzling glare around

the sitting room; my eyes ache from this glorious assault. The gas fire isturned up high but, the cold shudders, which I’m experiencing, strive todeny the fact.



Cheap thrills

Years ago I really enjoyed roller-coaster rides, the slow groaning ascent,

and the short plateau trail, all a part of the anticipated thrill of descent.These days, when it’s my health that boards the roller-coaster, all I longfor is a prolonged period of time to be spent on a somewhat lower pla-teau. Any descent is an unwelcome event!

Although undergoing a rather shattered tetchy phase at present, as mybody screams out for rest, my sleep pattern has returned to a muchmore erratic state. It’s a bit of a chicken and egg conundrum really; am Iunable to sleep properly because I’m so shattered or, am I shattered be-

cause I’m not getting the right kind of sleep?

Even the shutting of the washing machine door creates sufficient soundenergy to send shock waves through my chest, and sets my body trem-bling. At least these days it’s just a passing phase whereas, a few shortyears ago, I underwent extended periods of time when any unexpectedsound or strong light source was sufficient to send my nervous systeminto overdrive, my mind and body requiring periods of isolation to recover,so I’ve nothing to grumble about with the current situation!

The prospect of a long journey (5 ½ hours, arduously long by my stand-ards), to be made in the not too distant future, does little to ease mydiscomfort; in fact it starts the vicious tension circle rolling. Any journeythese days requires a steeling of the nerves on my part and, I only wish Ihad more courage to cope with the period of anticipation.

Meantime, weather permitting, the best therapy is sitting or potteringabout in the garden, observing the avian and piscine activity at close

range. Recent watercolour painting activity has ground to a (hopefullytemporary) halt, resources of mental / emotional stamina being in rathershort supply.



Through the night

Some days, the body just doesn’t belong to the skin which encapsulatesit. No matter what the elasticity may be, there’s quite simply too muchflesh to quietly co-exist within these restraints. To be honest, in my case,this experience of existential (and probably somatoform) disease anddespair is more likely to occur at night time, when total exhaustion over-whelms the necessity of sleep.

Last night was a case in point; having already been shattered earlier inthe day, my recumbent body alternating between disparagingly cold shiv-ers and shudders and clammy overheated perspiration. More about the,most enjoyable, day’s preceding events later; suffice it to say, some cou-ple of hours before the witching one, I was already in a sufficiently som-nolent state to anticipate a solid night’s sleep. Unfortunately, my whole

psychosomatic being chose to rebel against nature’s course.Everything was fine as my beloved snuggled up but, inevitably, therecame a time to turn over and, this led to the discomfort switch flickingitself to the ‘on’ position. Left side, right-side, back-side, front-side; noneof these postures bore any resemblance to comfort in any manner. Handsunder the pillow, between pillows, pillows propped up; none of theseproved the necessary perquisite for slumber. But the searing aches wereworst of all; starting from shoulders, hips and ankles, these debilitatingarrows swiftly became all pervasive.

Each slight movement led to a nauseating tearing of the armpits and thegroin; disrobing was definitely the order of the night, pyjama tops andbottoms were swiftly discarded but, it still felt as if, at each susceptiblebody juncture, these discarded robes were tearing into the flesh. Theaccompanying sense of nausea, caused in no small part by the post-nasaldrip, my all too persistent companion did little to alleviate my overallsense of distress. It was quite impossible to hold back the gut-wrenchingscreams emanating from somewhere deep within my psyche.

Visits to the bathroom, and occasional dressing gown bedecked amblingsaunters around the room, served little purpose other than to relieve thebruising monotony of simply lying there in the hope that sleep wouldsoon befall.

A few years back, similar nocturnal discomforts were par for the course;it’s strange the alarm that their excruciating return causes. Come morn-ing, the longed for sleep (and relaxation) arrived and I’ve just managedto raise myself from the duvet lair at 1.15PM. And I’m here to tell the tale.



A Breach of Composure

And suddenly the floodgates open, tears stream down my face and, I have to admit thatI’ve slipped back into a state of (re-active) depression. A few references on a DVD toChristmas, and other (potentially harmless) mentions of future plans, supplied both trig-

ger and detonator.

I cannot cope with planning on any scale; the stress of risking letting others down bynot materializing (at the proposed event) almost outweighs the risk of social isolationby avoiding pre-planning. I’ve always preferred spontaneity to planning and, thesedays, I can only venture out to any function at such time that physical and emotionalstamina levels permit.

For weeks now I’ve gone to bed wondering if I’ll still be around for my beloved; at othertimes, during the day I sometimes feel so washed out and painfully exhausted that I’mhoping and praying that I’ll still be alive when ma belle returns from work. I’m sure thatthe endless hours of restlessness and unrefreshing sleep does little to help the situa-tion.

Randomly recurring chest pains, most probably related to my digestive problems, some-times take on a terrifying aspect, especially when accompanied by a whirling lightheaded giddiness, racing pulse and sudden pallor. I’d never have believed that onecould change from shivering to sweating and back in the course of a few minutes, with-out any changes having occurred in one’s immediate environs, were it not for my fre-quent experience of such a phenomenon.

A spastic colon and mild diverticular disease tend to optimize the de-energizing effect of the other muscular discomforts; frequently having to rush to the loo at very short notice(uncertain as to whether it’s flatulence needing release or a more explosive expulsion of organic matter) leaves one with little opportunity to regain their composure.



Progress or Regress

Over the past few weeks I’ ve managed a bit of gentle socializing, acouple of meals out at Al Bivio, lunch at Café Culture, and even a

wonderful buffet lunch at Wesley followed by a stimulating talk, ne-cessitating conversation with ones neighbours at table, from the Presi-dent of Conference.

Essential as these socializing occasions are for one’ s morale, I onceagain, misjudged the amount of activity I could manage without pay-

back. I’ m afraid my payback threshold is much lower than I’ d hoped.Payback rewards usage of reserves of both emotional and phy-

sical stamina.

Shovelling compost from bin to wheelbarrow, not much more than a

dozen shovel loads at that, and hence to a small section of gardenborder proved several shovel loads too much. Not only the refreshedaches and pains in the lumbar region but, a full torso and limbsspread of irksome twinges, peripatetic clog dancers stomped their re-petitive way across and along muscles of upper and lower limbs whilsta vague dull headache gave way to waves of giddiness, as if to em-phasise my reward for a job well done.

On another occasion, just changing twenty litres of water from mymain aquarium was the camel’ s backbreaking straw. At least the fartoo regularly recurring shooting pains in the upper arm (armpit to el-bow and vice versa) have withdrawn their attention, in response to amore regularized tramadol habit!



same old pains regaining confidence

A plan to wait for an upturn in my state of wellbeing, before writing another blog post, has had tobe withdrawn from my agenda.

*****************

Apart from the griping gut churning abdominal spasms, a combination of regular IBS and diverti-cular problems, there always seems to be something extra to grab the focus of my attention.

Flatulence and dyspepsia are so commonplace as to go unremarked; I only wish I could ignore thegastro-oesophageal reflux!

I still seem to be undergoing some kind of relapse, intensifying over the past few days, as acutechest, joint and muscle pains, tenderness in armpits and under jaw, join forces with the abovementioned ailments. A recently refreshed collusion between GORD and post nasal drip seems tofurther conspire against any hoped for sense of well-being.

Mid to late afternoon, almost as a matter of routine, that grinding nausea inducing hollow ache inthe armpits sets in. On a good day, ten minutes sat with my arms pressed tight against my backalleviates the ache, to some extent; on most occasions it’ s also accompanied by aching pains inelbows and/or wrists. Sometimes supports applied to wrists and elbows bring the necessary relief but, increasingly, I find that I need to resort to some strong painkillers.

Although I rarely spend less than twelve hours (night & morning) abed, I increasingly have to re-sort to an hour or more lying down in the course of the day, the need usually prompted by achinglimbs and an unsettling aching giddy light-headedness.



My gradual emergence into the new day, from the nocturnal duvet realm, usually takesplace between 10.30 and 11.00am. On a good day, after a reviving intake of caffeine, I’llgo up to the garden pond to feed the fish and, stamina permitting, water the tomatoplants in the greenhouse. If it’s a really good day I’ll maybe saunter, stout walking stickenabled, to the neighbourhood parade of shops; other times it will simply be back in-doors for a rest.

Unfortunately, at present, I lack the concentration or attention span to settle down toread and enjoy any of the seductive volumes that can be found in abundance chez nous.Where once I enjoyed reading, both for pleasure and study purposes, I now impatientlyawait those rare intervals when a sufficiency of both physical and emotional stamina isavailable.

A variability in times it takes for sundry muscular, joint, and other aches and searingpains to set in (and drain my stamina reserves) means that my body imposes a need forfurther laying down rest any time from early to late afternoon. By this time I’ve oftenhad to don wrist and elbow supports to help ease quite severe discomfort in my limbs.

When ma belle is at home she easily recognizes when such rest is needed as pallor sud-denly sets in.

By 9.00pm, or shortly thereafter, acute tiredness envelops me, and aided by a dose of amitriptylene and some tramadol to ease pain and muscular spasms, I head up the woo-den stairs in anticipation (rarely, if ever, fulfilled) of a good nights sleep!

a little bit forward and a few steps back

After thirteen hours bed rest, and subsequent slow saunter downstairsand into the kitchen, I boldly strove to prepare a curry for Sunday and at

least one subsequent day’s dinner. It turned out to be one of the mostsatisfactory curries I’ve ever produced from scratch; a subtle balancebetween heat and flavour (or spice and other ingredients) proved mostenjoyable.

After my recent achingly exhausted days, I started to feel as if a modestrecovery was in the offing. Before dinner I wandered up to the garden

pond to feed the fish and then watered the tomato plants in thegreenhouse.

Mid-afternoon a painful ache in my left wrist was swiftly followed by athrobbing pain in the elbow of the same limb. I swiftly strapped up theaching joints to make myself feel a little more comfortable. Within ten

minutes my lower limbs were afflicted with a dull throbbing ache whilst Isimultaneously began to feel dizzily light-headed. By this time my face

had, apparently, drained of all colour – an appropriate pallor toaccompany an essential lying down to rest.



It wasn’t long before a nausea inducing discomfort in the armpits took its

rightful place alongside aching knees and ankles. All that was needed tocomplete the picture was a recurrence of the abdominal spasms;

fortunately this symptom was only mildly represented on this occasion.

The adventure continues.



Aching Days and Restless Nights

Do you ever get the feeling that the soles of your shoes are sprung lead platforms; thebass notes, from each drudge-like clomping step, resonating through the apparently

hollow tubes that connect each ankle to the knee bone. Forgot to add the feeling thatthe tube walls themselves are composed of compressed felt, specially treated to retain

an aching bruised sensation. Each several yards travelled feels like a half marathon. Tobe quite honest though, those are not my best days, and as for the worst days eventhose several yards would be well nigh impossible!

At other times there are the joyous shattered sleep deprived nights, frequently starting

with a disconcerting and discomforting acute ache in the upper arm, armpit and elbow,or fitful muscular spasms in the lower limbs, a generalized sense of disorientation

swiftly takes over. A complete nauseating distraction from the sleep intention seems it-self incapable of distraction; sore throat, nausea, tenderness of lymph nodes, and a re-

freshing of one’s IBS symptoms are just about par for these wee small hours distur-bances.

It always seems quite ridiculous that the more one requires refreshing sleep, the moredifficult it is to attain. Neither striving nor yielding seems to result in the anticipated

balm!

Ailments aside, I feel truly blessed in the warmth of my relationship with Helen, my be-

loved OH, and constantly wallow in (and yearn for) her presence. Although I can nolonger cope with cinema, theatre, jazz club or concert going, I still have, and revel in,

the opportunity via sundry technologies to enjoy music, film and concerts. This enjoy-ment is always enhanced when the experience is shared with ma belle!

At times our garden is so full of avian activity that it is a privilege quite simply to be sat

in my armchair observing all their comings and goings. Come to think of it, I am truly

blessed and surprisingly content much of the time!

that old familiar routine

There seems to be an increasing amount of times that I begin to feel (unjustifiably)

guilty; at the same time I’m perhaps forgetting many incidents about which I perhapsshould have felt guilt. The recent feelings of guilt are invariably related to my (chronic)illness; I can’t help but feel that my inability to socialize, or even far too frequently not

being able to go out anywhere at all, places an unfair imposition on my beloved OH.

For the past several weeks I seem to have reverted to an older pattern of routine dis-

comfort. Shatteredness is my routine daily state of being; far too frequently my sluggishemergence from the duvet lair necessitates a further rest after the effort of getting

dressed.



throbbing ache whilst I simultaneously began to feel dizzily light-headed. By this timemy face had, apparently, drained of all colour – an appropriate pallor to accompany anessential lying down to rest.

It wasn’t long before a nausea inducing discomfort in the armpits took its rightful placealongside aching knees and ankles. All that was needed to complete the picture was arecurrence of the abdominal spasms; fortunately this symptom was only mildly repre-sented on this occasion.

The adventure continues.

**************************

*unfortunately this didn't preclude a necessary resorting to some heavy duty pain-killers

Pacing can be a Pain

Since yesterday lunch-time the discomfort has become quite extreme, in factI don’ t know why I try to soften the sentiment by substituting the word dis-comfort for what has ranged from excruciating pain through agonizing, nauseainducing, aches. For several days back pains have flared up, presumably re-lated to the herniated disc, to the extent that it has proved virtually impossi-ble to find a comfortable position seated, reclining, or attempting to shuffle

about, for considerable periods of time.

For a couple of days my lower limbs have had that achingly rubbery feel that Ialways used to associate with a bad bout of flu. Cervical and axillary lymphnodes, in neck and armpits, have once again taken on a most disconcertingtenderness, as if striving to draw my attention away from those aches thatseem to flit between elbows and wrists. Gosh, as I write this down, it’ s just

dawning on me what bodily excitements I bear witness to.



Chronic abdominal spasms, and erratic spasms of irritation in the upper diges-

tive tract, make almost perfect companions to the not infrequent chest pains.It’ s almost as if some great controller has decided that no part of my torso orlimbs should feel lonesome; I must admit that my body’s erratic thermo-stat, with the dance between overheated and over-chilled clamminess,is beginning to feel absolutely normal.

A couple of weekends ago, I was so proud of my achievement in attending twoevents

of moderate socializing on consecutive days, but within thirty– six hours pay-back had well and truly kicked in. On the Monday, after the social weekend, itcame as something of a surprise to hear my GP utter those unex-pected words, “ don’ t push yourself” . When it comes to an illness like ME,there couldn’ t be any more sensible words of warning. Trouble is, on thoserare occasions, when one feels able to manage a modest amount of exertion,it’ s not always obvious where the boundaries lie.

Pacing is so vital but, at times, one seems to be set on an almost inter-minable learning curve.



a joyous combination

A wonderful combination of garden, sunshine, and gentle breeze helpslift the spirits. Having fed the goldfish in the pond, and watered thetomato plants (both in the greenhouse and the great outdoors), a sitdown on the garden bench, slightly shaded from the sunshine’ s fullglare, provided a rich reward.

Birds, bees and butterflies, a kind of fluttering congregation, hoveredand winged around in close proximity to me. I couldn’ t really saywhether they were oblivious to, or acceptingly aware of, my presence.I even enjoyed the shadow play on an adjacent wall, an animatedconversation between shadow and light.

It was almost as if this simple celebration boosted the efficacy of thepreceding dose of tramadol. If only thinking positive thoughts couldprovide a cure, today I’ d be the healthiest creature on planet earth.

Unfortunately, there are too many occasions when even the necessarystamina for true relaxation is in abeyance.



a lack of progress report

It happened again yesterday, on my way back home from dropping in a repeat prescription re-quest form; I bumped into an acquaintance of mine from my more active days of yore and His(seemingly inevitable) first comment was about how well I looked. I had to admit that I’ d had

worse days; after all, it’ s only on those most welcome better days I get out for even a short gentlestroll.

In the past few weeks all my endeavours to walk down to ‘ Open Church’ have been thwarted by acombination of rubber leg syndrome, aching joints, and a disturbingly acute onset lack of stamina.Even the utilization of a good strong back support and sturdy walking stick do little to alleviatethese symptoms. At other times the erratic behaviour of a spastic colon and diverticular disease

has prevented me from even venturing away from the house.

This afternoon I set off with my beloved to collect my prescription; this time after walking barely acouple of hundred yards, a return home was essential for me. My legs were suddenly heavy, it feltas if my torso was being supported by two loosely wrapped felt tubes stuffed with sodden kapok.Back in the house I collapsed into my chair as aches and pains raged and spasmed through myright hand side pectoral muscles and across my upper abdomen. A sharp gnawing pain in the left

armpit and inner upper arm played a nerve jangling counterpoint.

Totally disorientated, my head felt as if it was stuffed with some heavily brocaded fabric. Suddenunprovoked perspiration oozed from my head and torso as I became frightened by the prospect of fear itself.

The order of horizontality was essential to restore my equilibrium!



tidings of discomfort and joy

T he gaps between postings seem to be inc reasing; don’t know why I tell you that, pre‐

sumably you’d already noticed. S undry muscular aches and pains almost g ot the better

of me during rec ent w eeks, not so muc h the intensity of pain (barely halfw ay up thescale) but rather a disco ncerting all pervasive sense o f dis‐ease. A t present it feels as if

a g eneralized discomf ort proves more disabling than spasmodic acutely intense pain.

T he question constantly arises w hether codeine, tramadol or any g eneral painkiller can

tackle these dull persistently nagging aches. O n occasion simply putting on w rist, elbow

and shoulder supports seems to alleviate all but a bac k g round purring nausea, at

others only the c ombination of pills and strapping s seem to do the tric k .

I t’s strange that some nights, follow ing on from a more c omfortable day , the disc om‐

f ort only begins its nagging and gnawing routine when I attempt to settle down to

sleep; brief interludes o f dream laden sleep interrupt my sadly familiar restlessness. A t

times I c o uld sw ear that the amitripty line is w o rk ing as a stimulant rather than benef it‐

ting me w ith its suppo sed g ently seda tive pro perties.

F or the past several nig hts I ’ve pre‐emptively dosed my self w ith tramadol before retir‐

ing au lit but, I ’ll never k no w w hether it’s the medicatio ns ef f icacy that g rants me amore c omfortable (albeit still unrefreshing) night’s rest, or have these nights j ust hap‐

pened to be ones that w ere des ti ned to be more c omf ortabl e any w ay .

A t its w or st the discomf or t is such that I become nauseatingly ill at ease inside my

ow n sk i n … .

* * *

I ’m now beginning to see a reason f or not posting; all the prec eding spilt out as if I ’m

having a miserable life w hereas in fac t I c o ntinue to feel rather blessed.

M y love f or ma belle g row s ever deeper and, w hat’s more, that love is rec iproc ated.

The assuranc e that one is loved somehow overw helms lif e’ s more negative aspec ts,

simultaneously building one’s reserves of emotional stamina in readiness f or the on‐

going st ruggle f or j ust ic e and c ompassion f or all.



H aving alw ay s been of a somew hat gregarious disposition I still, not infrequently , find

my self mourning the loss of the ability to soc ialize (other than on the most modestly

minimal scale) but still feel fortunate that I can enj oy all k inds of music and drama via

t elevision, radio, and sundry rec orded f ormat s. I t’ s str ange the w ay that sudden unex ‐

pected sounds can serv e to shatter my nerv es, al most crushi ng the breath out of me,w hilst dramatic transitions in a musical score nev er ( or perhaps v ery rarely) seem to

pla y suc h a disr upt iv e r ole.

T he garden too is a sourc e of c onstant delight and ref reshment, even w hen it’s getting

a bit out of hand, and the avian ac tivity (view ed from the c omfort of a s upportive hig h‐

back ed armchair) is a const ant source of pleasure.

C ome to think of it, perhaps the reason I ’m not posting so reg ularly is that I ’m f a r t o o

busy a ppr e c ia t ing lif e!



A cr obati cs of the A bsur d

T o shift oneself from laying on ones back, in order to attain a side lying position,the first im perative is to shuffle the bottom up tow ards the top of the bed, elevatethe upper tors o and, only then attem pt the rolling ritual. S everal painfulattempts, to do so, may w ell be follow ed by a marginally less painful manoeuvre;once a relatively com fortable recum bent position has been attained, thepossibility exists that it may be maintained for at least 5 minutes before thefam iliar disease once m ore re- asserts its control of the situation.

Extending the offending lim b, dow nw ards, m ay alleviate the sharp shooting painor, alternatively, intensify the same troubling symptom. S creams, in response tothe agony are permitted but are by no means compulsory; tears may be stifledback or perm itted free reign according to the situation. I t is im portant toremember that removal of ones elf from the bed w ill at firs t require the exertion of

sitting oneself upright before gently m anoeuvring the low er lim bs over the edgeo f t he s leeping apparat us .

*************************

A totally sle ep deprived, routinely fatigued, body is forced to exist in a state of c o n s tan t ale rt.

For the past three nights, although totally shattered in m ind and body, sleep hasbeen a) difficult to co m e by and b) w hen it arrives, disrupted after a few minutes.

A gony is too passive a term to describe the degree of discom fort, even though itis definitely agonizing. Nerve shattering fatigue seem s to be overw helm ed by thedegree of acute pain that sleep is ruled out as an overcom ing option.

***************************

T his m ornin g, after a further night of doubt, sorrow and affliction, m y body finallyyielded to the overw helm ing necessity for sleep and, for several late m orninghours the pain w as forgotten as I lapsed into the arm s of M orpheus. For this I

give t h an ks .



P illo w T a lk

A fter w hat has been my best Christmas fo r years, health- w ise, the familiar tired-ness and sundry aches, pains and sensitivities have returned w ith a vengeance.A lthough I failed to emerge from the duvet- realm, on Chris tmas D ay, until w ellafter ( unbeknow n to m e) our guests had arrived, the day passed really w ell.

O bvious ly, t he ‘ J ourney T o B et hlehem ’ , and subsequent view ing o f M idnight M asson T V , had taken a little toll on my s tamina but, I s till managed to remain in goodspirits throughout the day w ithout recourse to the seclusion of the bedroom .

B y B oxing D ay severe back pains had ret urned, alongside aching m uscles in bot harms and lo w er limbs. O n W ednesday, after a late emergence into a day spentstruggling w ith a frustratingly painful locking back, I had to call it quits before8.30 in t he evening. A n addit ional pillow , under m y legs proved indispensable,although its position underw ent frequent changes, horizontally across m y side of the bed behind m y knees then, turned end on to proffer s upport from ankle to

thigh. A s the night ached along, the pillow w as doubled up under m y knees,whilst an additional support pillow was placed under m y head.

Each laborious turn, from back to side, from full stretch to foetal curl, found meto rn betw een a scream and tears. A tingling band, aro und the right calf, w assw iftly transm uted into a full blow n cram p before its further conversion into apulsing sharp bruise- like pain, w hich seem ed to percolate through every sinew of the offending lim b. I n the early hours, I struggled dow n the stairs to grab acigarette and take som e pain killers. O n occasion the pain w as m ore intense as Irested it on the floor but, at other times the discomfort w as more intense as I

raised it. A struggle back upstairs ensued and, I enj o yed an early m o rning cuppaw it h m y belo ved.

M a belle assisted m e in getting dressed, and saw m e safely do w n the stairs o ncem ore, before she depart ed for w ork. T he last couple of days have found m ereluctantly resorting to a varied diet of Codeine P hosphate, Co- Codam ol,P aracetamol and I buprofen tablets, despite my marked reluctance to takepainkillers. I n order to prevent any lapse into self- pity, I decided to venture dow nto O pen Church, an intention swiftly thwarted by the lower lim bs desire tocollapse aft er each cou ple of st eps.

M y qualitative leap forw ard, in terms of my enj oyment of Christmas festivities,w ill prove a tremendous boost in my attempt to overcome the subsequent stepsbac k !

I can still rej o ice in this day the L o rd has m ade.



MARKING TIME

There are moments when time weighs so heavily that the prospect of longevity seems

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

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

The close proximity of my beloved, even though frequently deep in slumber, serves toalleviate the worst excesses of my despairing self-pity, without her these momentary lapses into a sense of grievous desolation would be even more unbearable; even so ma

belle frequently deludes herself into thinking that she’s unable to help me!



A SLOW DELIBERATE DANCE

You put your right leg in,Then you scream and shout,hang the limb over the edge,let it all hang out …

Once again my old-time bed dance routine has been resurrected; theagonizing back and lower limb pain has returned with a vengeance; apainfully laboured tossing and turning is the only response I’mcapable of, in my attempt to overcome the two pronged attack ofsundry sharp shooting pains and excruciating dull bruised achingnumbness. It’s uncomfortable to sit, whether on an upright diningchair, a firm supporting comfortable chair, or even on the edge ofthe bed. After struggling to attain an upright position, hinderedby locking of knee, ankle and back, (slyly preceding a crudecollapse back onto the surface from which one was attempting toelevate oneself), the relief felt, albeit very temporary, must betangible to anyone within a few miles radius. A few steps, assisted

by a couple of walking sticks, managed to tease out a sigh ofrelease from every screaming muscle, joint, or nerve-ending.

Then follows a real brain teaser; does one attempt to sit downagain when body and spirit together urge one to have a lie down?The problem is that any recumbent posture soon becomes a source ofdiscomfort.

Earlier in the day, I’d taken a slow deliberate walk around theblock with my beloved in the misguided belief that this littlestretching exercise would prove beneficial! It turned out that Iwaslocking up even more after this little outing. Things got so badthat my beloved actually managed to persuade me to talk

(telephonically) to an “out of hours” doctor, who then arrangedthat ma belle chauffeuse would take me down to the “out of hours”practice at the District Hospital.

After a tediously painful one and a half hours waiting time, theduty doctor was really good and, managed to sort out which of mysundry medications could be safely (and effectively) taken incombination, and wrote me a prescription for a further supply ofTramadol SR 100mg which she has doubled up to two to be taken twicea day. It’s also safe to continue with the Meloxicam (anti-inflammatory) although my daily dose of Lanzsoprazole (a ppi) hasto be increased whenever I take anti-inflammatories. Othermedication continues as normal.

******************

Contrary to appearances, I don’t like resorting to pain-killersand, it is only with the greatest reluctance that I visit the GP.The sole reason that recent postings have centred on health is theintensity of my current dis-ease, precluding the possibility ofresorting to my beloved distractions.



UPROOTED

A general mode of tetchiness rapidly transmogrified into an explosive compound of anger,

frustration and despair. All of a sudden, slow oozing droplets of distress became a raging torrent of tears. The trigger for this outburst was the conclusion of Zadie Smith’s “NW”, as dramatised for

lasts nights transmission on BBC2; the drama itself had plenty of pathos, quite brilliantly portrayed,

but much of this, though moving, still left me as an involved observer of the characters lives but, far from an emotional wreck.

What really led to my emotional eruption was the closing scene where Natalie and Leah, regardless

of their present more prosperous middle class status and location, almost yearn for the life and

companions of their far from glamorous early lives together with their friends from that era. Thatearly life was in Kilburn, an area with which I was quite familiar when I lived in NW6 in the early

to mid-1960s. Even so, it wasn’t even the specific location that triggered my emotional collapse;

their awareness of having roots in a community where friends and acquaintances retainedsignificance.

It was almost as if a curtain had been raised on my social and emotional stage, a platform on which

I stood alone and rootless. Having been born in Canterbury, where doodlebugs celebrated my

nativity, I have absolutely no links or memories of this place. My parents moved us on a couple acouple of times in my early preschool childhood in Sussex and Hampshire, there was little chance

of having or retaining any significant friendships. My clearest memory of our time in Bournemouth

is playing with a toy red lorry whilst shouting out “mackerel, fresh mackerel” and misguidedlycrunching an acorn or two. I also recall being in isolation hospital, together with my big brother,

and seeing my parents on the other side of a glass screen, and also simultaneously remembering theexcitement at having my very own tin of dentifrice.

From there, we moved to the industrial north, to parts of Lancashire, West and North Ridings of Yorkshire, and county Durham all before leaving school at the age of sixteen. Shortly after leaving

school I travelled alone to the Sussex coast for my first temporary employment, whilst in the

meantime my parents had moved to rural North Devon where I subsequently joined them and foundfurther employment until I was able to start nurse training in Exeter. Since the age of 14, whilst a

patient in hospital, I’d known that nursing was my ideal job but, sadly due to an inability to adapt tonightshifts it didn’t work out so, a brief return to N Devon preceded my move to London NW6 to

work in Ministry of Labour HQ. Once again, whilst residing in the big smoke, my parents had

moved on, first to Staffordshire then, three years later, to a small market town in rural Lincolnshire.

Having burnt the candle at both ends, indulging an appetite for various intoxicants and exotic

substances, a mental health breakdown ensued and, I visited my parents for a few weeks rest. Thisrest swiftly took on another form as a cocktail of beer, spirits and sodium amytal, led to me putting

my fist through a few windows before being picked up by the local constabulary, and a consequent

period of sectioned containment in a psychiatric hospital on the edge of Lincoln. Ten months later I

emerged back into the real world, returned to London, only to discover that I could no longer copein that environment and, a return to Lincolnshire was in order.

From Lincolnshire we moved to a village in West Yorkshire from where I decided to apply for

university to study Philosophy and Theology as a ‘mature’ student. Having received four acceptances, purely on the basis of interviews, I decided on University of Hull and one year after

graduation pursued post-graduate studies in Sheffield.



I have lived in my present part of North Yorkshire since the late 1970’s but, it took considerable time before Itook on any sense of belonging, eventually attaining a wide circle of friends and acquaintances through both

my arts related and, subsequent, church related employment. My social life expanded greatly from the eighties

of the twentieth century through to the early noughties of this century. Meeting ma belle Helen in the last year of the old century, and marrying her early in the first year of the present century, has been by far the most

wonderful event in my life. My love for her grows with every passing day but, I still manage to upset her withan angry tetchiness that simmers just below the surface of me.

Since succumbing to moderate ME (myalgic encephalomyelitis), late 2003, all contact with (apparent) localfriends, indeed the friends themselves, have evaporated from my life. From being quite gregarious, I was

transformed into a semi-housebound sad-happy git; no longer able to venture out to (or cope with) gigs,

theatre, jazz venues or church services, even visiting the town centre (in the company of ma belle chauffeuse)can turn into a most daunting venture.

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

The church, where I had latterly worked as caretaker/ steward, turned its back on me because my illness,which lead me to an abrupt termination of employment, was interpreted by both vicar and curate felt as my

deliberate letting them down. Indeed, when early in the illness I managed to attend a service, John the curate

suggested to me that I was brazen/ had a nerve to show my face there. The only lay member of the church, atwhich I had been a housegroup leader, a group leader on the Alpha course etc., came to visit me was to invite

me to be another bum on a seat for Back to Church Sunday. Localised secular friends have been equally

negligent, since the illness took hold of my life.

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

Encephalomyelitis.

mals me jottings

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