just so story - zambalouked

absolutely zambalouked - that's it - zambalouked; there's no other word for it, it's indescribable without its forbears, and the whole interminable history of signs and symbols encountered en route.

First we had that dance routine, it starts with the knees this time. A dull throbbing ache vibrates through shins and sets the feet in motion. Next it's the wrists that ache, a slow burning fuse that sets the heavy upper limbs in discomforted motion, and then the nausea begins.

Elbows insist the arms must stretch, release the terpsichoreal spasms that shudder down from the armpits. Turn onto belly, cross arms behind the pillow, stretch legs and hook toes over the mattress end to stop their flailing burn.

*******

Do you know that, this time, I thought I'd gotten away with it.

Nice bright weather coaxed me out of my cocoon, just a little light weeding here, tack down some mineral felt there. Can't have been more than a couple of hours exertion spread across two days.

Then there was the modest change of 27litres of water from the 180litre aquarium, 3 buckets full either way, and that's my exercise!

I wallowed in that grand illusion; this time no payback. Guess what ...

*******

A couple of days later the nocturnal dance followed by this achingly shattered, confused emptiness, a totally zambalouked experience. Absolutely zambalouked, that's all I've got to say! 

Entranced by the strangest zambalouk.

living moderately

Well hello again! I’m not sure whether its weeks or months since I last proffered a “proper” blog post and, I must admit that the prospect seems rather daunting. No excuses, there’ve been good times and bad times, rough days and smooth days, since my last full offering and my stamina reserves have been used on other pursuits.

Upturns are represented by my casting aside the walking stick on several occasions, managing a moderately brisk walk of several hundred yards, whilst still lamenting an inability to manage a few miles. Some people are never satisfied!

I still enjoy our garden, no matter what the season, albeit from a passive observational perspective; what would we do without the professional services of our friend Martyn? Although I sometimes pride myself on my pacing, I still find myself suffering the payback penalty when enthusiasm for a modest task leads to even a modicum of over-exertion.

The usual problem is recognizing the exertion that may be demanded to fulfil an apparently simple undemanding task. One such example was a recent successful attempt at re-potting a contorted hazel shrub. Initial preparation of the new container went smoothly but, once I’d placed the plant in situ, the task of infilling turned out to be the proverbial straw. Brain fog, an amplification of all my familiar sundry aches and pains (muscular, joints, lymph nodes, abdominal spasms etc) and an inability to control my legs as I headed back to the house – a kind of conscious restless leg syndrome! The next couple of days passed in an achingly painful, mentally hazy, sense of being; it took a little more time before a tingling sensation of being trapped in an undersized skin receded.

It’s a few weeks now since my beloved retired from her salaried employment, at the doctors surgery, so I’m really enjoying more of her company. Mind you, she’s still meaningfully occupied as a local preacher, an assistant on computers at the Acorn Centre, Fair Trade issues and involvement with the local Labour Party.

 Until recently it has been somewhat difficult to persuade her to take much needed recuperative rest. Having always pushed myself, working and playing hard, prior (and probably causally related) to succumbing to ME, I do worry that some people ill-advisedly over exert themselves rather than listening to their bodies and ensuring they always have some stamina in reserve.

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

Encountering ME - a selection of poems, reflecting my experience of living with moderate ME can be read online or available as a free download from Scribd.

Mal’s ME Jottings – a selection of blog posts are also available on Scribd – read online or available as a free download.

  

The moderately infirm nursing the infectiously incapacitated

Talk about the blind leading the blind; it's pretty much a case of the moderately infirm tending to the needs of the infectiously incapacitated chez nous. Fortunately the payback from Friday's exertions has not proved as severe as its promise (see previous post) so, I'm able to support my beloved who has succumbed to an infectious ailment. Her throat started to be irritatingly bothersome last Wednesday night and then, became a cause of major sleep disruption (for her) on Friday and Saturday nights. [As one frequently plagued with an erratically disruptive sleep pattern, I can normally be found jealously observing ma belle's usual mode of deep sound sleep].

On Sunday morning, feeling much worse, she visited the out-of-hours doctor who diagnosed acute tonsilitis and prescribed phenoxymethylpenicillin 250mg - two to be taken four times a day for seven days. At that time, although feeling totally wretched and wrung out, Helen wasn't running a temperature; this morning, after a further night of minimal restfulness, she was feeling extremely nauseous, running a high temperature and, simultaneously, teeth-chatteringly shivering. Having spoken to her GP, via telephone, the dosage of antibiotics has been reduced to 1 tablet four times a day.

I'm just hoping that I don't fall victim to the same infection as, ma belle already feels guilty at having me running around after her! I’m somewhat overwhelmed by the sense of helplessness I experience when my beloved is unwell; although I’m happy to prepare whatever she’d like to eat or drink, it’s hard to cope with the fact that she  can’t manage, nor has any desire, to eat anything at the moment. It’s altogether a quite unusual situation as Helen is normally the one who can be relied on to “eat what is set before you, nothing doubting”. As she has already been sick a couple of times, sans food, I don’t think it would be fair to coerce her into eating just to help put my mind at ease!

I suppose that, in a way, this reversal of roles helps me to further appreciate just how difficult it must be for my OH to cope with my ME related sundry ailments and pattern of remissions and relapses. A carer’s lot is not a happy one.

Of LIMITATIONS and ENJOYMENT

OF LIMITATIONS and ENJOYMENT

Middle of the night and nature called; an attempted leap out of bed became the more familiar slowly lumbering self removal only, this time, with added difficulties. For the past two or three days the back pains had all but disappeared, only the more regular  discomfort remaining in its stead but, now it seems to have returned with a vengeance. It’s strange how one’s own body delights in playing tricks; just when you think it safe, to carry out an effort of moderate exertion, it sends out a disconcerting alarm signal. If only that signal was as transient as that of an alarm clock, disappearing as soon as one taps the necessary button, there would not be a problem but, unfortunately, these signals are not of that peremptory nature which curtails one’s pursuit of the (unwittingly) harmful course of action. These signals always seem to arrive after the harm has been done, swiftly transmuting the alarm call into a sustained aggravation.

So, you may well wonder, what transgression had I committed against my ailing torso? All I’d been doing was carrying out a partial filter and water change in our largest aquarium, changing two of the filter pads and performing a less than 20% water change. I could (almost) swear that I carefully controlled my posture during the entire operation, to minimize the risk of detrimental health effects, but my body makes a different declaration.

Prior to that minor operation I’d made a visit, with my beloved chauffeuse, to the local aquarists to replenish necessary supplies. The journey is approximately 2 ½ miles but, as is becoming an increasingly common experience, it felt like a major expedition; even travelling at speeds which never exceed the legal limit, on primarily suburban roads, can seem  like  we’re exceeding Mach 1 – my body  crying out in reaction to the velocity at which we’re hurtling through space. 

The whole sensory overload experience seems once again, and most regrettably, to be edging its way into taking control of my lived experience. I’m just hoping and praying that I won’t tumble once again into that convulsively shattering realm.

Strange as it may seem, apart from the sundry ailments which posit substantial limitations on my activities, I do continue to enjoy life. The simple pleasure of observing, and encouraging, the flora and fauna of our garden is a wonderful joy bringer, second only to the presence of my beloved. As I’m no longer able to cope with cinema or theatre-going, the increasingly wide range of films available on DVD proves a real blessing. My enjoyment of cooking, provided a fair range of herbs and spices are to hand, is another source of pleasure, as is the consumption of the end product! I must admit that much of the time I don’t really feel unwell, sundry muscular and glandular aches and spasms have quite simply become an accepted component of normality; it’s only when i attempt to stretch my activity output that I’m quite forcefully reminded of my limitations.

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

in case you missed yesterday's frivolous posting on 'Mal's Murmurings' I've repeated it here :

A Nation’s Addiction?

A radio news bulletin informs me that we’re becoming a nation of TV addicts, adding “according to a survey of viewers“!

They should try surveying non-viewers, only to discover that nobody ever watches TV in the UK!

 

Mal's M E jottings on New L4S

Apologies for the recent paucity of postings but, at least I've managed to find the stamina to add a new section, "Jottings from Mal's M.E. Log", to our 'New Luv4Sinners Website'

EMERGING

EMERGING

and this morning

still abed  

my legs

are mercury laden

knitted lead

the arms

folded or stretched  

scream out

for postures new

Malcolm Evison

15/01/11

Mal's Remarkable Murmurings

It's still early in the morning and, I've already posted a blog, REMARKABLE, on 'Mal's Murmurings'.

Seasons In The Sun

Sometimes, the weather makes one’s “pacing” easier; at others it proves the worst adversary. Recent days have seen a clear demonstration of this; a spell of dry sunshiny weather found me out in the garden, eager to tackle a number of overdue tasks and, even to feel inspired to make further modifications. When you can manage a little task it just feels so good, the morale is boosted and, one feels quite virtuous at having attained something that, in one’s lower de-staminated times, certainly seemed a task too far.

Experience has taught me the importance of retaining some energy, rather than go flat out to tackle the job in hand but, the temptation’s always there to do a little bit more. Surely one can manage that extra little exertion? Nine times out of ten I could; problem is, that extra little exertion is the proverbial straw that flattens the hump.

Five minutes more effort can mean several days painfully laid low, aching and feeling tortuously bruised in places one can’t imagine anyone having a name for; in fact, one has temporarily lost the ability to name even the familiar places. At these times, one wishes the world would end and, stamina permitting, one screams out the words that many hangover sufferer may utter the morning after, “Never again!”

Of course, at the weekend my beloved is around to keep an eye on me; she certainly doesn’t want to deal with the aftermath and, at times seems more aware of my limitations than I, in my better days, am capable of acknowledging.

Come Monday, the rains had arrived, drastically curtailing any desire to do a little more pottering about in the garden – guilt free, I’m able to take things easier! Wednesday afternoon, the sun breaks through in glorious splendour and the impulse to go forth and till the fields grows strong.

I settle for something a little strenuous and, transplant a few tomato seedlings, from the windowsill propagator into pots ready for placement in the greenhouse. Although not excessively hot, a little time in the sunshine coupled with a moderate exertion proves overpowering. The glow of satisfaction, at another little task completed, is counterbalanced by a tediously frustrating shattered-ness. In this instance the weather proved both friend and foe.

I can only give thanks for all the things I can manage and, a new preparedness to listen to my body.

tempus fugit - carpe diem

Doesn’t time fly by when one has nothing to do? Maybe I should correct that; one can usually find plenty to do but, time is always too short, especially when one has no fixed agenda.

There was a song, “Who Knows Where The Time Goes”, to which I always wanted to respond, “don’t ask me; it’s one of life’s little mysteries!” Mind you, there have been occasions when time seemed to hang like a leaden pendulum, especially when working as an accounts manager and we suddenly changed from old fashioned double entry book-keeping to a purpose built computerized system. Whereas on the one hand it was a much quicker process, much time was spent twiddling the thumbs, whilst we awaited the snail-mail delivery of our weekly printouts from the mainframe situated some ninety miles away.

Where once a simple glance at the ledger would show where any discrepancy had occurred, thanks to new technology, we now had to trawl through sheaths of lined paper filled with endless repetitions. Don’t get me wrong, accounts work was never mine by choice but rather a means of sustaining me whilst I got on with the important things in life. In those days, the only time that flew by was those hours outside of the office ones!

Later employment, working for the museums and art gallery service, both front and back of house, proved much more rewarding (even if somewhat less lucrative). Once the opportunity arose, not infrequently, to get on ones hobby-horse, time passed as if it had a rocket assisted launch. Even my last paid employment as a caretaker/steward at a thriving parish church, where I frequently toiled well beyond the appointed hours, saw the hours float away!

Nothing to do? I’ve been thinking about that, as my digits stray across the keyboard on auto-pilot: there’s always too much to do, especially the tasks for which I possess neither the necessary physical or emotional stamina! Stamina and intermittent brain-fog permitting, I can get on with my writing, watercolour painting, amateur website building etc, tending to the aquarium and pond inhabitants needs (sometimes not as frequently as I ought to – a missed filter clean/change here and there seems to occur due to lack of time and focus) and general pottering around in the garden.

I even manage to fit in the occasional socializing visit to ‘Open Church’ or ‘Café Culture’, events which health reasons had deprived me of for a rather prolonged period of time. One of these days, I may regain sufficient stamina to go to a gig or concert which was at one time a fairly regular part of my life.

I am extremely grateful for all that I can manage although still succumbing to bouts of frustration regarding the many things that I can no longer manage. Fortunately, “pacing” imposes itself on me when otherwise I would be tempted to return to the old boom and bust cycle. It’s almost as if my self-discipline now disciplines me.

Who knows where the time goes? I don’t really care, we only have one life and we’d better make the most of it!

Dichotomy - IAIYH

I've just had a Damascene conversion; I now realize that this ME thing is all in my head.

My head keeps telling me that I ought to be able to do things (after all six or seven years ago it was no problem!). Of course, my body tells me in a most excruciating manner that I'm not able to do those things. The head starts grieving for the limitations of the body, the restrictions on any socializing that I used to enjoy etc.; so I try to exert myself a little more, the effects a couple of days later are devastating.

There must be something wrong with my head, it has the false belief that I ought to be able to manage these things!

Suddenly the remembrance, from long ago days when I studied philosophy, you can't derive an "ought" from an "is". Then I knew that my head was wrong, it's just a bad philosopher. I may still have ME but, I'm not going to let my head make me feel guilty about it!

ME/CFS - Challenges of daily living

"Christine Milner is one of 250,000 in the UK who suffers from chronic fatigue, or ME. Here she gives a personal insight into what her life is like.

You wake up in the morning with a pounding head, aching from head to foot.

Your arms and legs feel like lead, your brain seems stuffed with cotton wool.

You console yourself with the thought that by this time next week you'll feel better.

Except you don't. No medication makes any difference to the way you feel, and over the coming weeks and months various doctors and well-meaning friends encourage you to "just do a bit more each day", even though you have as little energy and as much pain as you did that first day."

This is the beginning of an excellent article on living with ME/CFS - the full article can be found in the Yorkshire Post of 04 March 2009 ... Learning to live with challenges of chronic fatigue one day at at a time

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 overwhelms 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 shivers and shudders and clammy overheated perspiration. More about the, most enjoyable, day’s preceding events later**; suffice it to say, some couple of hours before the witching one, I was already in a sufficiently somnolent 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 morning, 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.

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

**PS (21/02/09 - 8.28PM) unfortunately I've been lacking the necessary stamina or resolve to fulfil this prediction: a very worthy report can be found on my beloved's blog 'Bright Light' - "Our Wedding Anniversary - Part One" and "Our Wedding Anniversary - Aftermath"

Slow Running

 

I doubt that it’s possible to resist this inbred protestant work ethic, and its consequent guilt trip. I’m the guy who, for many observers, seemed so laid back that, even when standing upright, my spine must have been around 45 degrees from the horizontal and yet, this gnawing guilt persistently upsets me.

For the past few years, for health reasons, I’ve been unable to undertake any employment paid or voluntary, each day being so unpredictable, presenting the unexpected obstacle or fresh hope; physical and emotional stamina rarely coincide even on the best of days. A major regret is that, when I was enjoying better health, I pushed myself that bit too far; my current ability to pace myself, to subsist on a lower altitude plateau, does not come easily.

A very good day for me, these days, means running at as high as 35% of what would have been a quite sluggish activity level for me a few short years ago, and yet, I’m still plagued by guilt. I ought to be doing more; forget the fact that taking a shower is frequently a daily task too far, cleaning my teeth an effort too much when exhaustion suddenly overtakes me, I should be doing more; I should be out there earning an honest living.

Of course the media, and politicians of all persuasions, almost daily attack anyone living on disability or incapacity benefits as degenerate scroungers. If only some of that vitriol could have been spared to attack the greed driven recklessness of the banking fraternity, or the many hours wasted (and billions of pounds lost to treasury) by those working out ever more devious tax-avoidance schemes for those who already have more income annually than most of us can expect to earn in a lifetime, our economy might now be in a far healthier state.

Perhaps in a few months time, when I chronologically comply with / qualify for the Old Age Pension, the “guilt” will flee from me. Somehow that could be the time for freeing up; it’s currently difficult to admit that I’m enjoying being a gentleman of leisure, whilst I so wish for the energy to be running in a far less leisurely mode.

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 herniated disc, so overshadowed my regular discomforting companions that, had I been able to overlook the surface anguish, I could have imagined myself 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.

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 querulous 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, ranging 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 Terpsichore:

Dance rules over all – it prevails against reason, common-sense and substantial portions 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, disclosing 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 discomforted restless night was in attendance, so nothing different then but the following 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 pharmacy 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 dosage 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 habitation, the taste of food, the sound of music and always one’s loving companion 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.

 

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 was locking 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.

collapse of the stoical front

Occasionally the stoical front collapses and tears catch one by surprise. That sudden inexplicable low, amidst the sundry serial and perpetual ailments that beset one, tips the balance. Is it the constant pain, the seemingly interminable incapacity, the sense of isolation resultant from that same invisible disability, or a more general existential angst? Perhaps it’s the combination, of all those things, that sets the tears flowing; for a while I teeter on the brink of self-pity and it proves a real struggle to regain my general positivity. [No sooner have the symptoms of a recent chronic bout of sleep disrupting sciatica receded than a case of TMJD (temporal mandibular joint dysfunction) takes pole position in the table of well-being assailants.]
I’ve always suspected that it’s much harder to witness and share the suffering of a loved one than it is to suffer oneself but, when one does suffer from any ailment, or dis-ease, the awareness that those who care for, and about you, somehow share your pain, intensifies the sense of spiritual suffering. The sufferer also feels guilty at imposing, on the one who loves and cares for them, some of the restrictions (on the socializing front) implicit in one’s own condition. I frequently find myself apologizing to my beloved for my, all too familiar, achingly fatigued condition, and the consequent wearyingly low stamina levels; it’s not that I blame myself for being ill but, to be honest, I’d prefer to be an enabler rather than a burden.

This posting is also on Mal's Murmurings.

A Nudge and a Wink

Night-time trips between bed and bath rooms are fraught with a sense of adventure; my faith in the stability of bed end, stair rail and wall, has not been undermined so far. As long as the muscular and joint pains remain discomfortingly persistent, I remain on guard for the possibility of a random stumbling collapse; at least, in this one respect, the rest and sleep destroying acute discomfort seems to serve a useful purpose!

 

Somehow “collapsing” sounds far more dynamic than “creaking”, at least the results are far more spectacular when, knee, ankle, or hip joint, suddenly give way. The competition between “creaking” and “collapsing” into action becomes increasingly intense.  The sheer unpredictability of which joint takes priority ensures that my enforced sedentary lifestyle never becomes boring.

 

 

What I’m missing most of all is a decent night’s sleep; no matter how exhausted / positively shattered I may feel on retiring au lit, by the time I’ve struggled out of daytime attire, donned pyjamas and, performed the appropriate ablutions I’m far too fatigued to sleep.

 

I can usually guarantee that I’m going to be alerted into wakefulness at least once or twice in every hour by some chronic jarring discomfort emanating from anywhere between small of back and ankles. I still fail to understand the logistics that require the shifting (and adjustment) of the whole of my body, in order to achieve a minor adjustment in the alignment of the right lower limb; we’re talking microns here!

 

Somewhere between 3.00 and 4.00 am, I usually seem to achieve a state of full alertness although this effect has usually been squandered some time before my beloved stirs in anticipation of preparing herself for work.

 

All being well, I manage to remove myself from the duvets hypnotic allure by 11.00 am, only to fall asleep again mid-afternoon, my wife not uncommonly returning from work to find me in a dazed stupor.

An Aching Drift

Perhaps it’s quite simply a case of living in hope, although it could just as easily be misconstrued as a fatalism of self-pity. Each day, I’ve been putting off any attempt at blogging, not for lack of ideas or, my lack of stamina (a sufficiently persuasive excuse) but rather, in the belief that I’ll soon be feeling better and hence, the possibility of having some actual events/activities to report on.

 

Pain, discomfort, fatigue and bruising exhaustion, constantly struggle to be at the forefront of my attention; for the time being any pain control medication (the primary current one being ‘Tramadol’) seems to lack efficacy! In some ways, it’s as if I’ve not been able to recover from my little jaunt to the South coast at the beginning of September. Even the most modest journeying insists on extracting a disproportionate toll from yours truly.

 

If I can’t be positive, there seems little point in bringing others down but, a good humoured resilience in the face of ill-health gets a bit tedious at times. Must admit that I’m just as worried about my health as is my good lady but, I tend not to wear my anxieties on my sleeve!

RESTORED to ME

 

If one lives in a state of perpetual “not-wellness”, how is it possible to detect when they are ill? I refer to those kinds of chronic condition, which one learns to accept as normative, the regularly attendant symptoms of which would be construed as a real crisis condition in anyone blessed with more normal health.

 

In seeking equilibrium, I would never be so foolish as to anticipate more than 100% recovery from any aberrant additional infliction that comes my way, although the chance would be a fine thing; the real problem is being able to recognize when one’s health has been restored to its most recent pre-viral attack condition. Are the sore throat, earache, glandular tenderness, and muscular pains in the lower limbs and joints a further manifestation of the recent gastric knockout infection or, do they quite simply represent a return to my normative ME/CFS state?

 

Is there something wrong or, am I quite simply being restored to me?