"

“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 neurological
illness 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 spending
a 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 retain
something 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 collapsed
state, 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 caretaking
tasks. The glands under my chin / top of my neck constantly felt tenderly
painful and, I became very tetchy about things, trivial upsets becoming
major calamities. I was no longer able to concentrate on reading, previously
one of my great pleasures, and found myself floundering at times in trying to
remember the name of some everyday items. Although I seemed to be taking
plenty of rest, my sleep pattern became increasingly disrupted and, I forgot
what 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 work
mid-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 venture
into town, or even the local shops, as I seemed overwhelmed by all the
auditory and visual stimuli ( the lack of the necessary physical and emotional
stamina 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 the
endocrinologist and the ENT consultant. My tetchiness and weariness both
seemed to increase, indeed anger became quite a prominent emotion (that
was 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 was
referred 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 pain
control 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 only
some 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 very
useful
(although initially arduous) breathing exercises, they helped me with my
pacing. Having expected to be “pushed”, I was somewhat surprised when
the 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 more
than decimated, I should be told to slow down!

I still manage to get my pacing wrong at times, especially when an
adrenaline 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 a
pattern 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 after
9.00am, 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 can
cope with the effort, return to the desktop and continue to get nowhere
slowly. By this time a serious debate with oneself occurs, the topic is the
pros and cons of showering.

By 11.30am, I succumb to the lure of the shower. Sheer luxury as I sit in
the shower; I rub my face almost gleefully, watch the water flow over my
weary limbs, the warmth seems to alleviate the pesky muscular aches
and pains with which I share my daily journeying. This is bliss, it almost
feels like something I should feel guilty about; it takes quite some time
before I even contemplate the washing process, it’s almost as if in these
moments 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’s
not quite simply a dream; all is calmness!

There once was a time, which I find hard to believe, when showering was
a straightforward mundane routine, neither pain or pleasure. Next, there
was a period when I could only take a shower when my beloved was
there to support me, an omnipresent giddiness / light-headedness made
the shower a most insecure place for me. Things became somewhat easi-
er once my beloved obtained a shower seat; once that was in situ, the
task became far less troublesome, although for long enough it still proved
a chore. I still found that by the time I emerged from the soaking, and
towelled myself dry, a half-hours rest (minimum) was required before I
could consider getting dressed.

Anyway, that’s the past and this is now. I’m still basking in the afterglow
of that serious pampering, provided by the shower unit. The muscular
and joint pains are returning but, I am still able to revel in observing the
sun 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 a
thought 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 in
futility 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 preceding
days, and nights, had been dominated by intensely excruciating pain, rang-
ing from the numbing tourniquet, to the slightly blunted arrow; the bone and
muscle 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 it
causes 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 to
concentrate, a generalized dull ache underlining the spasmodically erupting
specific sharp pains; all was eventually blanketed under a heavily nausea
spiced•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 hospital
for 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 appreciation
of the home environment. For the first-time this season, I was aware of the
seasonally decorated dining table, and the various Christmas ornaments and
tinsel 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 I
am 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 leaden
ache above the eyebrows; a general sense of hollowness within the skull
and torso – the kind of discomfort that it is so difficult to express. Today,
this has taken pole position against the competing sharper, sometimes
excruciating, 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 bruising
kind, compare to an experience of an acute electric shock? Can
numbness 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 preoccupying
dis-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 the
physical and emotional stamina required to make, or permit my beloved
to 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 want
to bother them with.

I suppose that the recent disabling excruciating pain, caused by a herniat-
ed disc, so overshadowed my regular discomforting companions that, had
I 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 is
turned up high but, the cold shudders, which I’m experiencing, strive to
deny 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 long
for 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 my
body screams out for rest, my sleep pattern has returned to a much
more erratic state. It’s a bit of a chicken and egg conundrum really; am I
unable 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 sound
energy 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 short
years ago, I underwent extended periods of time when any unexpected
sound or strong light source was sufficient to send my nervous system
into 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 my
discomfort; in fact it starts the vicious tension circle rolling. Any journey
these days requires a steeling of the nerves on my part and, I only wish I
had more courage to cope with the period of anticipation.

Meantime, weather permitting, the best therapy is sitting or pottering
about in the garden, observing the avian and piscine activity at close
range. Recent watercolour painting activity has ground to a (hopefully
temporary) halt, resources of mental / emotional stamina being in rather
short supply.
Through the night

Some days, the body just doesn’t belong to the skin which encapsulates
it. No matter what the elasticity may be, there’s quite simply too much
flesh to quietly co-exist within these restraints. To be honest, in my case,
this experience of existential (and probably somatoform) disease and
despair 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 in
the 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, there
came a time to turn over and, this led to the discomfort switch flicking
itself to the ‘on’ position. Left side, right-side, back-side, front-side; none
of these postures bore any resemblance to comfort in any manner. Hands
under the pillow, between pillows, pillows propped up; none of these
proved the necessary perquisite for slumber. But the searing aches were
worst of all; starting from shoulders, hips and ankles, these debilitating
arrows swiftly became all pervasive.
Each slight movement led to a nauseating tearing of the armpits and the
groin; disrobing was definitely the order of the night, pyjama tops and
bottoms were swiftly discarded but, it still felt as if, at each susceptible
body juncture, these discarded robes were tearing into the flesh. The
accompanying sense of nausea, caused in no small part by the post-nasal
drip, my all too persistent companion did little to alleviate my overall
sense of distress. It was quite impossible to hold back the gut-wrenching
screams emanating from somewhere deep within my psyche.
Visits to the bathroom, and occasional dressing gown bedecked ambling
saunters around the room, served little purpose other than to relieve the
bruising monotony of simply lying there in the hope that sleep would
soon 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 managed
to 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 that
I’ve slipped back into a state of (re-active) depression. A few references on a DVD to
Christmas, 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 by
not materializing (at the proposed event) almost outweighs the risk of social isolation
by avoiding pre-planning. I’ve always preferred spontaneity to planning and, these
days, I can only venture out to any function at such time that physical and emotional
stamina levels permit.

For weeks now I’ve gone to bed wondering if I’ll still be around for my beloved; at other
times, during the day I sometimes feel so washed out and painfully exhausted that I’m
hoping and praying that I’ll still be alive when ma belle returns from work. I’m sure that
the 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 light
headed giddiness, racing pulse and sudden pallor. I’d never have believed that one
could 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, a
couple 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 once
again, 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 garden
border proved several shovel loads too much. Not only the refreshed
aches and pains in the lumbar region but, a full torso and limbs
spread of irksome twinges, peripatetic clog dancers stomped their re-
petitive way across and along muscles of upper and lower limbs whilst
a 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 my
main aquarium was the camel’s backbreaking straw. At least the far
too regularly recurring shooting pains in the upper arm (armpit to el-
bow and vice versa) have withdrawn their attention, in response to a
more 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 to
be 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 the
gastro-oesophageal reflux!

I still seem to be undergoing some kind of relapse, intensifying over the past few days, as acute
chest, joint and muscle pains, tenderness in armpits and under jaw, join forces with the above
mentioned ailments. A recently refreshed collusion between GORD and post nasal drip seems to
further 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 in
the armpits sets in. On a good day, ten minutes sat with my arms pressed tight against my back
alleviates the ache, to some extent; on most occasions it’s also accompanied by aching pains in
elbows 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 aching
limbs and an unsettling aching giddy light-headedness.
My gradual emergence into the new day, from the nocturnal duvet realm, usually takes
place between 10.30 and 11.00am. On a good day, after a reviving intake of caffeine, I’ll
go up to the garden pond to feed the fish and, stamina permitting, water the tomato
plants in the greenhouse. If it’s a really good day I’ll maybe saunter, stout walking stick
enabled, 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 to
read 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 impatiently
await those rare intervals when a sufficiency of both physical and emotional stamina is
available.

A variability in times it takes for sundry muscular, joint, and other aches and searing
pains to set in (and drain my stamina reserves) means that my body imposes a need for
further laying down rest any time from early to late afternoon. By this time I’ve often
had 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 downstairs
and 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 most
satisfactory curries I’ve ever produced from scratch; a subtle balance
between heat and flavour (or spice and other ingredients) proved most
enjoyable.

After my recent achingly exhausted days, I started to feel as if a modest
recovery was in the offing. Before dinner I wandered up to the garden
pond to feed the fish and then watered the tomato plants in the
greenhouse.

Mid-afternoon a painful ache in my left wrist was swiftly followed by a
throbbing pain in the elbow of the same limb. I swiftly strapped up the
aching joints to make myself feel a little more comfortable. Within ten
minutes my lower limbs were afflicted with a dull throbbing ache whilst I
simultaneously began to feel dizzily light-headed. By this time my face
had, apparently, drained of all colour – an appropriate pallor to
accompany 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 to
complete 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; the
bass 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 that
the 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. To
be quite honest though, those are not my best days, and as for the worst days even
those 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 more
difficult 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 no
longer 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 perhaps
should 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 sluggish
emergence 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 time
my face had, apparently, drained of all colour – an appropriate pallor to accompany 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 to complete the picture was a
recurrence 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 fact
I 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, nausea
inducing, 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 I
always used to associate with a bad bout of flu. Cervical and axillary lymph
nodes, in neck and armpits, have once again taken on a most disconcerting
tenderness, as if striving to draw my attention away from those aches that
seem 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 or
limbs 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 two
events

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, it
came 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 those
rare 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 helps
lift the spirits. Having fed the goldfish in the pond, and watered the
tomato plants (both in the greenhouse and the great outdoors), a sit
down on the garden bench, slightly shaded from the sunshine’s full
glare, provided a rich reward.

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

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

Unfortunately, there are too many occasions when even the necessary
stamina 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 gentle
stroll.

In the past few weeks all my endeavours to walk down to ‘Open Church’ have been thwarted by a
combination 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 alleviate
these 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 a
couple of hundred yards, a return home was essential for me. My legs were suddenly heavy, it felt
as 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 my
right 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. Sudden
unprovoked 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  g a ps  be t w   e e n po s t i ng s  s e e m t o  be  i nc re a s i ng ; do n’t  k no w   w   hy  I t e l l  y o u t ha t , pre ‐
sumably you’d already noticed. Sundry muscular aches and pains almost got the better
of me during recent weeks, not so much the intensity of pain (barely halfway up the
s c a l e )  but  ra t he r a  di s c o nc e rt i ng a l l  pe rva s i ve  s e ns e  o f  di s ‐ e a s e . A t  pre s e nt  i t  f e el s  a s  i f
a generalized discomfort proves more disabling than spasmodic acutely intense pain.

The question constantly arises whether codeine, tramadol or any general painkiller can
tackle these dull persistently nagging aches. On occasion simply putting on wrist, elbow
and shoulder supports seems to alleviate all but a background purring nausea, at
others only the combination of pills and strappings seem to do the trick.

I t ’s  s t ra ng e  tha t  s o me  ni g ht s , f o l l o w i ng  o n f ro m a  mo re  c o mf o rt a bl e  da y , t he  di sc o m‐
fort only begins its nagging and gnawing routine when I attempt to settle down to
sleep; brief interludes of dream laden sleep interrupt my sadly familiar restlessness. At
t i me s  I c o ul d s w e a r t ha t  t he  a mi t ri pt y l i ne  i s  w o rk i ng a s  a  s t i mul a nt  ra t he r t ha n be ne f i t ‐
ting me with its supposed gently sedative properties.

F o r t he  pa s t  s e ve ra l  ni g ht s  I ’ve  pre ‐ e mpt i ve l y do s e d my s e l f  w i t h t ra ma do l  be f o re  re t i r‐
ing au lit but, I’ll never know whether it’s the medications efficacy that grants me a
mo re  c o mf o rt a bl e  ( a l be i t  s t i l l  unre f re s hi ng )  ni g ht ’s  re s t , o r ha ve  t he s e  ni g ht s  j us t  ha p‐
pened to be ones that were destined to be more comfortable anyway.

At its worst the discomfort is such that I become nauseatingly ill at ease inside my
own skin ….

***

I’m now beginning to see a reason for not posting; all the preceding spilt out as if I’m
having a miserable life whereas in fact I continue to feel rather blessed.

My love for ma belle grows ever deeper and, what’s more, that love is reciprocated.
The assurance that one is loved somehow overwhelms life’s more negative aspects,
s i mul t a ne o us l y bui l di ng o ne ’s  re s e rve s  o f e mo t i o na l  s t a mi na  i n re a di ne s s  f o r t he  o n‐
going struggle for justice and compassion for all.
Having always been of a somewhat gregarious disposition I still, not infrequently, find
myself mourning the loss of the ability to socialize (other than on the most modestly
minimal scale) but still feel fortunate that I can enjoy all kinds of music and drama via
television, radio, and sundry recorded formats. I t ’ s st r a n
  ge  t h
  e  w a y t h
  a t  su
 d
 d
  e n
  u
 n
  e x ‐
pected sounds can serve to shatter my nerves, almost crushing the breath out of me,
whilst dramatic transitions in a musical score never (or perhaps very rarely) seem to
play such a disruptive role.

The garden too is a source of constant delight and refreshment, even when it’s getting
a  bi t  o ut  o f  ha nd, a nd t he  a vi a n a c ti vi t y ( vi e w e d f ro m t he  c o mf o rt  o f  a  s uppo rt i ve  hi g h‐
backed armchair) is a constant source of pleasure.

Come to think of it, perhaps the reason I’m not posting so regularly is that I’m far too
busy appreciating life!
Acrobatics of the Absurd
To shift oneself from laying on ones back, in order to attain a side lying position,
the first imperative is to shuffle the bottom up towards the top of the bed, elevate
the upper torso and, only then attempt the rolling ritual. Several painful
attempts, to do so, may well be followed by a marginally less painful manoeuvre;
once a relatively comfortable recumbent position has been attained, the
possibility exists that it may be maintained for at least 5 minutes before the
familiar dis-ease once more re-asserts its control of the situation.

Extending the offending limb, downwards, may alleviate the sharp shooting pain
or, alternatively, intensify the same troubling symptom. Screams, in response to
the agony are permitted but are by no means compulsory; tears may be stifled
back or permitted free reign according to the situation. It is important to
remember that removal of oneself from the bed will at first require the exertion of
sitting oneself upright before gently manoeuvring the lower limbs over the edge
of the sleeping apparatus.

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

A totally sleep deprived, routinely fatigued, body is forced to exist in a state of
constant alert.

For the past three nights, although totally shattered in mind and body, sleep has
been a) difficult to come by and b) when it arrives, disrupted after a few minutes.
Agony is too passive a term to describe the degree of discomfort, even though it
is definitely agonizing. Nerve shattering fatigue seems to be overwhelmed by the
degree of acute pain that sleep is ruled out as an overcoming option.

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

This morning, after a further night of doubt, sorrow and affliction, my body finally
yielded to the overwhelming necessity for sleep and, for several late morning
hours the pain was forgotten as I lapsed into the arms of Morpheus. For this I
give thanks.
Pillow Talk
After what has been my best Christmas for years, health-wise, the familiar tired-
ness and sundry aches, pains and sensitivities have returned with a vengeance.
Although I failed to emerge from the duvet-realm, on Christmas Day, until well
after (unbeknown to me) our guests had arrived, the day passed really well.
Obviously, the ‘Journey To Bethlehem’, and subsequent viewing of Midnight Mass
on TV, had taken a little toll on my stamina but, I still managed to remain in good
spirits throughout the day without recourse to the seclusion of the bedroom.

By Boxing Day severe back pains had returned, alongside aching muscles in both
arms and lower limbs. On Wednesday, after a late emergence into a day spent
struggling with a frustratingly painful locking back, I had to call it quits before
8.30 in the evening. An additional pillow, under my legs proved indispensable,
although its position underwent frequent changes, horizontally across my side of
the bed behind my knees then, turned end on to proffer support from ankle to
thigh. As the night ached along, the pillow was doubled up under my knees,
whilst an additional support pillow was placed under my head.

Each laborious turn, from back to side, from full stretch to foetal curl, found me
torn between a scream and tears. A tingling band, around the right calf, was
swiftly transmuted into a full blown cramp before its further conversion into a
pulsing sharp bruise-like pain, which seemed to percolate through every sinew of
the offending limb. In the early hours, I struggled down the stairs to grab a
cigarette and take some pain killers. On occasion the pain was more intense as I
rested it on the floor but, at other times the discomfort was more intense as I
raised it. A struggle back upstairs ensued and, I enjoyed an early morning cuppa
with my beloved.

Ma belle assisted me in getting dressed, and saw me safely down the stairs once
more, before she departed for work. The last couple of days have found me
reluctantly resorting to a varied diet of Codeine Phosphate, Co-Codamol,
Paracetamol and Ibuprofen tablets, despite my marked reluctance to take
painkillers. In order to prevent any lapse into self-pity, I decided to venture down
to Open Church, an intention swiftly thwarted by the lower limbs desire to
collapse after each couple of steps.

My qualitative leap forward, in terms of my enjoyment of Christmas festivities,
will prove a tremendous boost in my attempt to overcome the subsequent steps
back!

I can still rejoice in this day the Lord has made.
MARKING TIME

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

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

The close proximity of my beloved, even though frequently deep in slumber, serves to
alleviate the worst excesses of my despairing self-pity, without her these momentary
lapses into a sense of grievous desolation would be even more unbearable; even so ma
belle frequently deludes herself into thinking that she’s unable to help me!
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; the
agonizing back and lower limb pain has returned with a vengeance; a
painfully laboured tossing and turning is the only response I’m
capable of, in my attempt to overcome the two pronged attack of
sundry sharp shooting pains and excruciating dull bruised aching
numbness. It’s uncomfortable to sit, whether on an upright dining
chair, a firm supporting comfortable chair, or even on the edge of
the bed. After struggling to attain an upright position, hindered
by locking of knee, ankle and back, (slyly preceding a crude
collapse back onto the surface from which one was attempting to
elevate oneself), the relief felt, albeit very temporary, must be
tangible to anyone within a few miles radius. A few steps, assisted
by a couple of walking sticks, managed to tease out a sigh of
release from every screaming muscle, joint, or nerve-ending.

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

Earlier in the day, I’d taken a slow deliberate walk around the
block with my beloved in the misguided belief that this little
stretching exercise would prove beneficial! It turned out that I
waslocking up even more after this little outing. Things got so bad
that my beloved actually managed to persuade me to talk
(telephonically) to an “out of hours” doctor, who then arranged
that 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, the
duty doctor was really good and, managed to sort out which of my
sundry medications could be safely (and effectively) taken in
combination, and wrote me a prescription for a further supply of
Tramadol SR 100mg which she has doubled up to two to be taken twice
a day. It’s also safe to continue with the Meloxicam (anti-
inflammatory) although my daily dose of Lanzsoprazole (a ppi) has
to be increased whenever I take anti-inflammatories. Other
medication continues as normal.

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

Contrary to appearances, I don’t like resorting to pain-killers
and, it is only with the greatest reluctance that I visit the GP.
The sole reason that recent postings have centred on health is the
intensity of my current dis-ease, precluding the possibility of
resorting 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. That
early life was in Kilburn, an area with which I was quite familiar when I lived in NW6 in the early
to mid-1960s. Even so, it wasn’t even the specific location that triggered my emotional collapse;
their awareness of having roots in a community where friends and acquaintances retained
significance.

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

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

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

From Lincolnshire we moved to a village in West Yorkshire from where I decided to apply for
university to study Philosophy and Theology as a ‘mature’ student. Having received four
acceptances, purely on the basis of interviews, I decided on University of Hull and one year after
graduation pursued post-graduate studies in Sheffield.
I have lived in my present part of North Yorkshire since the late 1970’s but, it took considerable time before I
took on any sense of belonging, eventually attaining a wide circle of friends and acquaintances through both
my arts related and, subsequent, church related employment. My social life expanded greatly from the eighties
of the twentieth century through to the early noughties of this century. Meeting ma belle Helen in the last year
of the old century, and marrying her early in the first year of the present century, has been by far the most
wonderful event in my life. My love for her grows with every passing day but, I still manage to upset her with
an angry tetchiness that simmers just below the surface of me.

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

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

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

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