Wreckage & relief

This is a post I hastily scribbled down, primarily for my own benefit, several days ago. Having just stumbled across it again I thought it was maybe worth sharing 

            Wreckage & Relief 

 Where to begin, where should I have started in trying to understand my current drought of both emotional and physical stamina. The easy bit is accepting that we are psychosomatic beings, it’s pretty obvious that when one is physically, and not infrequently painfully, well below par it inevitably has an impact upon one’s emotional/mental sense of wellbeing.

 I’ve returned to a pattern of restless discomfited nights far outweighing any restful ones. I am fortunate that my combination of amitriptyline and tramadol about an hour before bedtime, (the efficaciousness of which has been reverse demonstrated on those occasions when I have omitted this cocktail, either accidentally or purposefully), still serves to keep full-blown restless legs at bay.

 Discomfort in armpits, elbows, wrists, feet and knees seem to come and go in quite random fashion both nocturnally and diurnally. On another level, reading has become difficult (once again in random fashion) as I seem to lose concentration after just a few lines and futilely return to the beginning. Emotionally, tears are erupting with very minor prompts such as hearing of the death of one time friends and comrades, even though I’ve not been in contact with them for some time. Listening to music, frequently makes me think of, not too far distant, times when I’d have been enjoying the same music or song with my beloved Helen, who of necessity has had to reside in a nursing home since January of last year, following a few years of severe physical and mental health problems. Those recalls are invariably of a bittersweet nature, and I find myself having to reach for the box of tissues.

 Much of what I’m experiencing is reminiscent of when I succumbed to moderate ME, back in the noughties, which led to my premature retirement from any formal wage-labour! 

 The attempt to write down my current physical/emotional state of being has somehow driven the darkest clouds a little bit further away. 

 Malcolm Evison 08/03/24

A Quick And Yet

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

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

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

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

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

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

REFRESHED or NOT

To sleep, perchance to dream; no that’s not it, I dream that I may once again experience a sense of refreshment from my sleep. I have, quite simply, lost track of how many months, or even years, have passed since I last remember having felt really refreshed after a night’s sleep. The one thing that’s for certain is that I now require at least eleven hours of bed rest per night just to function quite modestly.

What has brought this state of affairs to a head is the (apparent) payback I’ve experienced the past couple of days, a result of having an early appointment at the local hospital on Monday morning. By early, I’m talking a 9.20 appointment which incurred my curtailing my bed-rest by just over two hours; that experience may, perhaps, demonstrate that I do in fact receive a certain amount of refreshment from my normal extended bed rest, hence the payback yesterday and today.

Yesterday was the first time, for a while, that I was totally unable to tackle the short evening walk with Piper; a sudden onset giddiness alongside unsupportive (de-boned sensation) lower limbs. Today, I started the evening walk but was suddenly overwhelmed by a sense of breathlessness / gasping for breath accompanied by a not unfamiliar discomfort in the upper abdomen, alongside a bruised tenderness in the armpits (axillary lymph nodes).

Apart from the sleep deprivation (early appointment), the hospital visit went well; I saw consultant, went for X-Ray, saw consultant again and, in spite of having heard an apology for delay in the clinic, was back on the road home, with ma belle chauffeuse, within 80 minutes of the clinic appointment time. I now await an appointment for an arthroscopy of the right knee.

The excitedly enthusiastic welcome home from Piper, our delightful hound, was overwhelming; he re-acted as if he’d missed the pair of us (ma belle et moi) for at least a couple of weeks. Of course my excursions away from the immediate vicinity of the homestead are quite rare occurrences so, the simultaneous absence of both his people may prove a little unsettling for our boy Piper.

CHANGING NOCTURNAL TRADITIONS - (one man, one woman, and their dog)

Last night, once again, was of the somewhat discomforted variety, regardless of a pre-emptive dose of amitriptyline and tramadol. It was rather difficult to clamp down on the moans & cusses that seemingly forced their way out of my mouth; my beloved responded by cuddling me tight (until she was overwhelmed by sleep) but then, the cuddles were followed by a gentle patter of feet, approaching the bed, as our beautiful hound came to add further comfort, stretching his forepaws across my upper arms and his head across my shoulder, and onto my neck as he lay along the edge of the bed.

You may well think that Piper, our beagle–podenco hybrid hound, was very clever to hear, and respond quite swiftly to, my moans upstairs, when his bed is in a room, behind a closed door, downstairs. Up until a few short weeks ago he did indeed sleep downstairs, usually on a sofa in preference to his quite de-luxe bed. Matters changed when Helen had a bad coughing fit, at night, to which the solitary Piper responded by whining, barking and finally banging against the living room door.

After this sustained barrage of sound we succumbed to his whiles / concern and allowed him to run upstairs. That night he settled himself on the duvet, creating his own cradle in a ridge between the recumbent bodies of Helen and myself.

After a couple more evenings he had decided that he needed to keep an eye on us, sneaking through the living room door in the time it took to switch off a light. He soon decided that he didn’t like being alone and commandeered the bedroom armchair, equipped with an old blanket and towel, as his customary nocturnal roost.

Come morning, he pays a visit to our bed, as if to check we’re alright and still there. If he outstays the welcome of his inspection routine, he can generally be persuaded to go back into HIS chair!

un-Common Cold and Burning Toes

 For the first time in many years I’ve succumbed to a full blown cold, hardly surprising, one might say, as my elder step-daughter Beth who stayed with us at Christmas, and my younger step-daughter who had her Christmas dinner with us at the end of December, were both ‘full of cold’. This time the whole caboodle, complete with headache, neuralgia, sinusitis, sore throat, coughing and sneezing, has taken possession of me. Quite strangely, since succumbing to M(yalgic) E(ncephalomyelitis), a full blown common, or even uncommon, cold has scarcely hit my radar; it’s almost as if the bodies dysfunctional immune system mysteriously managed to ward off these additional ailments.

Those many cold-free years seem even stranger as, in the run-up to my major ME collapse, flu-like symptoms seemed to be permanent squatters chez moi (see item STUMBLING THROUGH in ‘Mal’s ME Jottings’ PDF - https://www.scribd.com/document/193365025/Mals-ME-Jottings-Extended-Edition

Last night, although I felt desperately tired, and in need of recuperative sleep, that was not to be; additional forces militated against this necessity. Having dosed on sundry analgesics, at intervals throughout the day, I later took my regular amitriptyline prior to anticipated sleep-time alongside a small dose of tramadol; it was an irksomely familiar ailment that served to prevent any efficacious slumber time. A sustained bout of ultra-sensitivity, a sensation of tingling, throbbing’ burning toes, at whose base there seemed to be an invisible ridge which couldn’t tolerate the touch of bed linen, and even the weight of the air at the duvets edge became unbearable at times. This found me struggling to mute my anguished cries and cusses of discomfort, and even an additional dose of tramadol failed to alleviate the pain.

A CRY of SELF-PITY – an ATTEMPT to EXORCISE the PAIN

Although I’m, by now, well used to unrefreshing sleep, the past couple of weeks have found me experiencing the most erratically intermittent bouts of night time rest, haphazardly interlaced by an alarming array of discomforting, nausea inducing, peripatetic tingling and throbbing parcels of pain.

A spasmodic, sudden onset, sensation of the knees being crushed and clamped from either side, by surreptitious g-force avengers, is the most recent addition to my more familiar catalogue of aches and pains. Sometimes the pain is partially alleviated by the donning of sports knee supports; at other times the supports simply add another layer of throbbing discomfort. On other occasions my only recourse is to an extra dose of tramadol, even though its efficacy is slow to be realized.  

Wrists and/or elbows frequently ache and throb, for no apparent reason, but application of elasticated supports soon alleviates the worst excesses of the discomfort. For a considerable time now  I have avoided donning any nightwear on the torso, as PJ jackets seemed to exacerbate the nausea inducing discomfort emanating from axillary lymph nodes. More recently I’ve had to don jacket or vest, at times, to alleviate a disconcertingly abstract discomfort around the shoulders and armpits.

The most infuriating of the many nocturnal disturbances / sleep preventatives is a sudden tingling rasping sensation on the tops of my toes, sometimes almost feeling as if it emanates from a felt, but non-existent, elevated ridge, on top of the foot, just behind the toes. This frustrating event usually occurs just as my body and mind feel sufficiently sedated to visit the land of nod. Its onset is frequently marked by an almost uncontrollable flailing of the lower limbs and, an angry muted scream of profanities emanating from the mouth of yours truly. The touch of the sheet, against the suddenly over-sensitive toes, can seem to be an overwhelming tortuous  burden.

No matter how tired, or even exhausted, I may feel as I prepare for my bed-rest, these sundry ailments and irritations ensure that I rarely achieve more than occasional brief cat-naps for many of the nocturnal hours.  In terms of sleep, my requirement / need rarely seems to be fulfilled.

A large bag full of supports for shoulder, wrist, elbow, back etc. now accompanies me on the daily transition from sitting room to bed room, from day into night.

A CRY of SELF-PITY – an ATTEMPT to EXORCISE the PAIN


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

PS 22/09/16 see also:

Restless - Illustrated Poem

on 'Mal's Factory' which reflects a similar theme!

out of the kitchen and missing the heat

Although each hour, of each day, may seem to drag at present, it still amazes me how swiftly each year seems to pass. Most of the time each day has seemed to pass far to quickly, no sooner is one getting into it’s swing than tiredness sets in; gosh, I’m sounding like a real Grinch today.

The (current) absence of not only a functioning kitchen, but even sans kitchen sink, or even a single gas or electric hob, just seems to leave a hollow at the core of my being. Who would have thought that once, not too many years ago, I subsisted on a diet of predominantly microwaveable (so-called) meals; even in recent days, the cooking bug having for some time since had a hold of me, preparation has felt at times a chore too far, only reluctantly pursued. No working kitchen and an echoing void of proposed kitchen diner exuding its presence into the lounge, leaves one feeling achingly hollow.

I am indeed fortunate to have a roof over my head, a partner to love and be loved by, yet still I find temporary inconvenience a source of veering close to a state of reactive depression. It would be easy, of course, to blame my dispiritedness on my permanent condition of aches, pains, disorientation and unrefreshing sleep, which admittedly doesn’t help, but then I feel overwhelmed by guilt at my self pity. In a land where the government is determined to punish the poor, the  vulnerable and disabled in response to a crisis caused by their banker friends, what right have I to feel at all sorry for myself?    

CLOCKWATCHING

Strange how putting the clock back an hour can make one feel capable of regaining time; if only! To be honest though, it’s the very fleetingness of time that I’m still struggling to come to terms with.

As a child it feels as if the next summer holiday, Christmas Day, or even the weekend, can’t ever come soon enough. Confined to the schoolroom, the hours of each day hang leadenly as you watch real life going on at the other side of the window. Mind you this slower passage of time also provided greatly extended hours of play, leaving one exhausted long before the day was done.

These days, after a long night’s unrefreshing sleep and restlessness, that state of exhaustion seems to accompany almost any small task; perhaps it’s not really exhaustion but rather an aching void replacing that illusive space where stamina reserves should be accumulated.

When one’s sundry aches and pains are playing neurological havoc it’s easier to understand the lack of stamina but, this physically aching void doesn’t even seem to require these more tangible ailments. Mind you the IBS, diverticular disease, rhinitis etc; are always lurking just below the surface.

The lower my stamina reserves, the tetchier I become and, whatever reserves are there explode in bursts of angry expletives. I don’t deny that I’ve always had a bit of a temper, the outbursts often justifiable on socio-political grounds, but the frequency of expletives in my occasional outbursts seems to have grown exponentially. Anger stems from frustration, frustration from limitations on both physical and emotional stamina.The truly ridiculous thing is that these outbursts leave me feeling more drained.

Although these aching voids can sometimes feel like an eternal punishment, days (and even years) have passed by so swiftly, as if to emphasize the weight of spiritually / emotionally good days I must be having. Any day spent with my beloved is wonderfully worthwhile, even if I’m not always the best of company.

So little time, and so much I want or intend to do. I’ve put the clocks back but, sadly, I cannot put back time.

the space-hopper weighed down

A deep lethargic spirit consumes my very being; a lead weighted space-hopper would be about right as a description of my personage at 11.30 am. Last night was the worst of those seemingly endless, restless, nauseatingly painful nights that I’ve experienced in a long time. Don’t get me wrong, a disconcertingly discomforted restless night is currently par for the course, but last night was topped with added painfulness. Even my regular pre-emptive strike against nocturnal discomfort, amitriptylene and tramadol taken an hour or so before snuggling under the duvet, seems of little if any avail these days.

 

As I fitfully tossed, turned and squirmed au lit, post-nasal drip and gastro-oesophageal reflux added a further frustrating layer of dis-ease to the tenderness of cervical and axillary lymph nodes. Invisible clog dancers throbbed their way from armpit to elbow, elbow to wrist, before treating the rib cage as a xylophone. As I stretched my legs over the end of the mattress, my toes burnt as if they were being scrubbed with a wire brush. Once the nagging aches pulsed through my hands I decided to don my wrist splints which, somehow, seemed to gradually alleviate the pains in my upper arms.

 

Even the weather seemed to conspire against sleep, the roar of the wind was disturbingly amplified as I lay there, watching the flickering shadows which took on a somewhat threatening character in the darkened bedroom. An irrational childhood fear of the dark seems to have re-emerged recently, although it only applies to darkness within a building not in the great outdoors. Switching on a bedside lamp almost miraculously eased some of the bodily tension but, even then, only quite short snatches of sleep, from around 4.00am,were on the menu. It seems to be the rule that only unrefreshing sleep may be proffered to yours truly! The past couple of weeks have also seen an alarming resurgence of diverticular and spastic colon symptoms, no doubt contributing towards the sudden all enveloping exhaustion which erratically disrupts my daytime routine (or lack of such).

 

I am of course in that period of my life when I start to question how many of my ailments, or to what degree, they are symptoms of an ageing body as much as the manifestation of an underlying chronic illness?

 

Now, here’s the surprise. In spite of all the foregoing ailments I still manage to enjoy life, constantly amazed by the intricacy and complexity of the world around us, attempting to interpret one’s relationship not only to the earth and one’s immediate vicinity but, how we fit into the whole cosmic scheme. The joy that I gain by observing the sheer variety of flora and fauna, even just within the confines of our garden, still fills me with a sense of wonderment. That there is something, rather than nothing, into which we have been thrown, is cause enough for celebration; the love I share with ma belle Bright Light ultimately overwhelms a one time tendency of mine towards cynicism.

utilized day but what a night

And yesterday I was gifted with a little extra stamina and, I also felt capable of correctly pacing my utilisation of this resource.  Took advantage of this little power surge to top-up and refill the sundry avian feeding stations in our garden; meal worms, sunflower hearts, black sunflower seeds, suet treats etc. most of which swiftly attracted a miscellany of birds ranging from starlings, blackbirds, finches, blue, coal and great tits, collared doves and the odd wood pigeon were all ready for some superior dining experience. I swiftly realised that all the birds’ watering stations needed de-icing so heated up some water.

Already my halo was shining and, I felt totally in control of my physical stamina resource. Mid-afternoon was time to sort out the main aquarium, changing 30 litres (out of the tanks 180litres) and changing nitrate removal filter and a couple of others. Proud of my achievement I relaxed a little before par-boiling a few potatoes, ready for roasting alongside the already simmering casserole which I’d prepared on Sunday.

That’s when the tiredness hit but, fortunately, not uncomfortably so. Come bedtime, I started to feel that I was being punished for the day’s moderate exertions. Perhaps I’m not handling my pacing all that well. Tenderness of the glands under my chin and in the armpits seemed to be sufficiently calmed by a fairly light dose of painkillers but, obviously I’d been deceived again!

Having joined my beloved au lit, decided to watch a diverting little sitcom on TV before snuggling down.  Within about ten minutes of attempting to settle down, the peripatetic clog dancers decided my lower limbs were an ideal place to practice. The duvet felt as if it was scrubbing the skin off my toes as a nausea inducing bruised aching feeling ambled from calf to thigh and back again. Whatever angle I positioned my legs bent or straight, stretched over the end of the bed, hung out over the bed side, the disconcerting ache continued. At one stage I half fell from the bed, my right calf resting on the rug whilst my left lower limb remained in bed, a real groin stretching experience. I can assure you that this posture wasn’t the result of any voluntary action.

Next thing, the old familiar nauseating aches in both arms began to do their darnedest; applying wrist support splints initially seemed to make little difference. I found myself unwittingly whispering, and occasionally screaming, profanities against the Gethsemane night, alongside whimpering like a lonely puppy. Many hours later I started to enjoy a little post-dawn sleep.

Reluctantly, I emerged from the duvet lair, and returned morning greetings to the bright shiny sun!

for this ordinary day ...

What a relief; today I feel much more my usual “better-day” self! Yesterday was the kind of day one always hopes to avoid; from waking-up, after a familiarly intermittent non-refreshing pattern of sleep, and throughout the whole day and evening I felt numbingly exhausted, despite the fact that the excruciating pains in my hip and left limb were quite markedly in abeyance.

 

Last night, as I [un]settled down to sleep, that once far too familiar painfully hollow sharp bruised ache in my left arm took over. Having already taken painkillers, I duly applied a wrist splint which seems [occasionally] to alleviate the nauseating discomfort. A nausea inducing dull tenderness in the armpits soon became apparent; I had to remove my [not at all tight fitting] pyjama jacket which began to feel as if it was constricting armpits, upper arms and shoulders.  

 

The minor setback followed eight days in which I had felt the brightest I could remember for a considerable time. Concentration, alertness and general sense of wellbeing were on a, far too rare, high consequent upon the acupuncture treatment received on 31 January.

 

I feel really blessed in having visits from a physiotherapist, trained in both Eastern and Western models of acupuncture, who has considerable experience / understanding of ME [Myalgic Encephalomyelitis] both as a practitioner and a fellow sufferer. Being enthusiastically athletic, it must have come as quite a blow when she succumbed to this wretched neurological condition. Working as a physiotherapist, she had noticed the detrimental effect that exercise was having on some of her clients; at the time I doubt whether there was any inkling that this could become part of her own experience.

 

Today has been a wonderfully relaxed time in the company of my beloved, exchanging sweet nothings, and catching up with some recorded TV programmes. For this ordinary day – I give thanks.

simple pleasures and a heartless regime

Sometimes, far too frequently in fact, I forget to count my blessings.

Quite recently I was able to enjoy Christmas to a far greater extent than has been the case for several years past; I actually managed to pace myself reasonably well, with a minimum of twelve hours bed rest per twenty-four. Medications and grace combined to keep the worst excesses of pains, aches and sensory overload at bay; even my limited reserves of emotional stamina held out well for this time of grateful celebration.

In the past few days I’ve crashed a little; sudden bouts of fatiguing exhaustion during daytime hours are (almost invariably) followed by restlessly discomforting nights. At least I’m able to do a bit of reading, even though my concentration wavers considerably more than in days of yore! Most importantly, I’m able to enjoy the activity without it seeming a chore.

I always feel privileged to love and be loved by ma belle Helen, just to hold and be held by each other brings with it a tremendous sense of wholeness, going a long way towards alleviating that sense of isolation arising from a greatly restricted ability to socialise in the wider world since the onset of this debilitating illness.

Sat in a comfortable supporting armchair, I can watch all the avian activity in our garden; in recent days we’ve had plentiful visits from coal, blue, and long-tailed tits, alongside the sparrows and starlings. Their antics are always a delight, as are the regular sightings of red kite, gracefully riding the thermals overhead.

As a recipient of a state pension, alongside a couple of small company pensions, I am fortunate that I no longer have to be dragged through the arduous demeaning benefits medical assessments, that so many sufferers of chronic illnesses – mental or physical – are so unfairly forced to endure, adding further stress to their already vulnerable state of being.

I am truly blessed, having food in my belly, a roof over my head and, we are still able to afford to keep ourselves warm (despite the profiteering greed of the privatized utilities). These things, that should be a right, are increasingly becoming a privilege under a heartless ConDem regime.   

To Sleep Perchance ...

Just what’s going on in my body; I neither understand nor have the appropriate vocabulary to realistically express it. Sometimes I can feel mentally/emotionally well whilst my body feels excruciatingly below par; I didn’t think this was supposed to happen! At other times, whilst my corporeal aches and pains are in temporary abeyance, I can feel emotionally drained. I sometimes wonder if the sundry prescribed medications I take can become part of the problem.

I regularly resort to mebeverine (antispasmodic) to deal with my spastic colon/IBS; at other times a little motility aid such as domperidone (dopamine antagonist) is required. Alongside these I always have to take lansoprazole (proton pump inhibitor) to tackle a major gastric reflux problem.

I have recently been taking a small dose of sertraline daily, to deal with an anxiety/reactive depression issue, whilst at night 30mg amitriptyline is prescribed to assist (theoretically) with sleep and pain management. Currently, I also need to take 100mg tramadol a couple of times a day to deal with muscular and neurological pain.

That little diversion, into a pharmacopoeia, was not intentional; it just seemed easier to scribble down than a description of how exhaustedly crap I’d been feeling in the past couple of days. Sadly I’ve had to forego a couple of Christmas social evenings this week, both of which I’d been looking forward to; mind you, that simply reflects my general lack of physical and emotional stamina since 2003.

When I do manage to sleep, I’ve recently been having very vivid audio visual Technicolor dreams, not infrequently drifting from ultra normal situations, with many familiar faces, into the edge of nightmare territory. In one such dream friendly banter amongst friends took an horrific turn as an ogre broke into the room. The ogre, which I understood to be a “Cam-Moron”, had a smug superior grin as his cheeks blushed with roseate anger. “We’re going to put all you lot down”, he sneered. At that point I woke up to a fuller realization of what the ConDems were doing to the poor and vulnerable! 

*********


this post also appears on 'Mals Murmurings' under the title 'We Are Such Stuff ...'

tidings of discomfort and joy

The gaps between postings seem to be increasing; don’t know why I tell you that, presumably 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 scale) but rather a disconcerting all pervasive sense of dis-ease. At present it feels as if 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.

It’s strange that some nights, following on from a more comfortable day, the discomfort 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 times I could swear that the amitriptyline is working as a stimulant rather than benefitting me with its supposed gently sedative properties.

For the past several nights I’ve pre-emptively dosed myself with tramadol before retiring au lit but, I’ll never know whether it’s the medications efficacy that grants me a more comfortable (albeit still unrefreshing) night’s rest, or have these nights just happened 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, simultaneously building one’s reserves of emotional stamina in readiness for the ongoing 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. It’s strange the way that sudden unexpected 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 bit out of hand, and the avian activity (viewed from the comfort of a supportive high-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!

sorry 'bout this ...

For the past hour and a half, since about 17.30hrs, I’ve been divided between allowing myself to drift off to sleep or struggling to remain awake. It’s a regular occurrence mid to late afternoon to be fending off an excruciating fatigue, seemingly regardless as to the amount of sleep I’ve managed to grab the preceding night and morning; un-refreshing intermittent nocturnal sleep has just about been par for the course these past several years. Currently I’m sat with both wrists splinted in an attempt to alleviate an extremely discomforting ache in both hands and forearms, alongside a nausea inducing uneasiness in the armpits which requires me to squeeze the upper arms tightly in to the torso.

At least, today, I am not experiencing any submandibular aches and pain, nor is my spastic colon (or the diverticular disease) troubling me as much as it has done for the past several days. Even my lower limbs seem relatively trouble free.

Sorry, but current discomfort prevents any further keyboard endeavour for the time being …

from Minor to the more mundane

Sometimes the desire to communicate "from" overwhelms the paucity of substance from which one may wish to communicate. At others, that very desire (to communicate) is thwarted by an insufficiency of physical and/or emotional stamina. I am, currently, undergoing a rather prolonged wilderness trek.

Whilst I observe nature's changing seasons, primarily in the context of our gardens flora and fauna, I'm reluctant to admit to my own ageing. Having already felt rather decrepit, for a considerable period of time, the next season for me hardly bears thinking about; much better that I skip a season and pray for Spring's renewal.

The furthest my adventurous spirit has allowed me to travel of late is 'Open Church' at our local parish church or, even closer to home, 'Cafe Culture' located within a few hundred yards of our front door.

 A somewhat spastic colon puts paid to any desire to venture further afield whilst sundry, at times excruciating, muscular aches and pains contribute little to any such desire. Discomforting armpit and submandibular tenderness, an erratically irregular sore throat, acid reflux and post nasal drip, are worthy daytime adjuncts to nocturnal restlessness, night sweats and unrefreshing sleep.

Life is never without its drama, as one may be instantly transported from a state of relative alertness to that of a shattering exhaustion.

Cussing and Tears

For someone who needs / requires a minimum sleep & bed rest of at least twelve hours per night, things take a quite dramatic turn when medications fail to support the necessary restfulness. Last night / this morning proved a cussingly tearful case in point; the cussing, tossing, turning and stamping during the night, the tears on late emergence into the daylight hours.

Having taken an overdue shower, mid-evening, I seriously anticipated a good night’s sleep as I mounted the stairs en route to beddy byes. A quick brush of the teeth, followed by a casting off of the dressing gown, and I was ready to snuggle down with my beloved. No matter how tired I felt, golden slumbers had little or no intention of passing my way.

Crushingly searing pains in the left arm, coupled with muscle spasms in the lower limbs, conspired against the best laid plans. It wasn’t long before the lightweight pyjama jacket, which began to feel unduly constrictive, had to be cast off and, I then tried to apply the wrist splint, which has on many occasions seemed to alleviate the intense discomfort in the upper limb. Arms stretched downwards, both under and over the duvet, then stretched behind my back followed by stretching them above my head; none of this solves the extreme discomfort. Next I try lying on my left side, lying on the right side, lying on my front with arms crossed under my pillow but none of this helps. The discomfort screamingly intensifies.

 Having taken amitriptyline during the evening, I now reluctantly resort to 2x50mg tramadol but, even these seem to have little effect. Eventually, sometime after 3.00am, some snatches of sleep; vividly Technicolor naturalistic dreams haunt me back to wakefulness. A time of hopeful waiting follows, hopeful that I may soon revisit the land of nod; I drift back into slumber and a different dream.

When I eventually feel more awake, and find sufficient stamina to remove myself from the duvet lair donning daytime clothing, I’m suddenly overwhelmed by tears of intense frustration. Suddenly, I can’t help feeling that this health-imposed lifestyle is letting life pass me by. It’s only very rarely that I can venture beyond the neighbourhood high street, even that becoming an effort at times, that even the pleasure I derive from the home garden and aquarium begins to wane. I certainly couldn’t manage without the loving tenderness, care and caresses, of ma belle Helen but, at the same time, I feel utterly guilty and upset by the stress I must be causing her.

********

This post also appears on 'Mal's Murmurings' as "a self-pitying yelp of frustration"

the best laid plans

After that wonderful Early Bird morning and subsequent day, ( bird talk – not quite up with the larks ), I fully expected  a decent nights sleep to follow. My hopes and expectations were drastically thwarted; I remained resolutely awake and alert throughout the nocturnal hours, sleep only arriving after 8.30am and, spasmodic at that. As a result, my emergence from the duvet realm (yesterday) did not occur until 11.30am; the rest of the day witnessed little action from yours truly until mid-afternoon when I gathered a few windfall apples, raked and grazed the ground (including the longer grasses intrusive moss underlay) in the more wildlife friendly area of the garden and, gathered a few tomatoes from the greenhouse plants.

The evening was spent basking in the company of ma belle, listening to some music before watching ‘Doc Martin’. By 10.00pm I was most decidedly shattered, even omitting the teeth cleaning ritual prior to hitting the sack. Almost immediately upon my head sinking into the pillow I was wrapped in slumber. Sound sleep, with a few intermittently vibrant dreams, ensued until after 7.00am. Post 7.00am   I slumped back into sleep until 10.00am, the cup of coffee, left on my bedside table as my beloved departed for work, remained untouched and well and truly chilled.

One would have thought that an early venture out of the house, following such a good apparently refreshing sleep, would have found me with an extra spring in my step but, that was not to be the case. As I headed off along the road, my lower limbs felt as firmly supportive as a pair of loosely rolled-up towels. My left arm felt like an achingly hollow lead tube.

About a third of the way towards my goal, Open-Church at St Marks, I mentally yielded to the message from my exercise resistant limbs and, after the briefest of pauses, began the slow saunter home; and now, a few rested hours later,  my body finally seems to be waking up.

Watching My Back

I'm still waiting, albeit impatiently, to find a more regular pattern of sleep; needless to say, such a pattern has not yet emerged. After Monday night's peculiarly refreshing sleep, Tuesday night reverted to the more familiar restlessness; emerging before 10.00am to take a shower on Wednesday, both morning and afternoon necessitated intermittent little naps. By the evening I started to feel a little more awake; not a good sign. Come Thursday morning I was still in the throes of sleep when ma belle ventured off to work (around 7.30am), finally emerging into the new day a few minutes before noon.

And then the cycle repeats, Thursday's late emergence led on to a further night of intermittent sleep, although I did manage to remove myself from the duvet lair around 11.15am on Friday morning and, I then seemed to spend most of the day in an half alert state of being.

Retired to bed at about 10.20pm on Friday evening and then gradually stumbled into a waking state some time after 10.00am Saturday morning. Early in the afternoon I went out into the garden to take a few macro shots, of bees on globe thistles etc., but started feeling a sense of giddyness which persuaded me to go back in the house. Some twenty minutes later I started to have throbbing shooting pains, down my left arm, exceeding the all too familiar aching discomfort of the wrist which is my regular companion!

So, it's panic stations (for me and ma belle) as we head off to the District Hospital when the throbbing pain shows little sign of abating. The good sign is that I'm becoming rather flushed rather than going pale but, we're totally puzzled / worried about this temporarily excruciating addition to my catalogue of ailments. The first nurse who sees me, after about 40 minutes, makes a few notes and checks my temperature and blood pressure, the latter unusually high by my standards, before I return to the waiting area.

After a further 90minutes, or so, I'm called into an examination room where an ECG is administered; at least my heart seems to be OK and, by this time the pain had subsided considerably. A further 40 - 50 minutes later a Romanian doctor comes in and, having sounded my chest and back, and a little chat about Romanian wines, she carries out a few tests on the reactions of my arms and hands to touch. She duly notes an abnormal contraction response in my left bicep before examining the top part a of my spine. Once again as she touches a certain point relatively high on the spine, a quite painful shooting throb goes through my left arm. She notes a degree of misalignment of the spine and thinks that, together with the herniated disc in the lumbar region, could account for much of the pain and discomfort I've been experiencing. As she puts it, I'm sorry to tell you it's a back problem.

An evening in which I took anti-inflammatories alongside a couple of tramadol, and a preparatory mirtazapine, still managed to lead to a night of restless intermittent discomfort rather than a good nights sleep. Today has seen me swaddled in both shoulder and wrist supports as I tackled both dinner preparation and subsequent light gardening chores. Both wrists are currently screaming abuse at me, so once more I resort to ibuprofen, tramadol and, hoping against hope that the mirtazapine will have the necessary sedative effect.

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.