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!

Of Resting and Sleeplessness – postlude to Stress of the Normal

Come early evening and tiredness verging on exhaustion takes passing hold of me but, as a notoriously bad sleeper, I hoped not to drift off at such an early hour. Of course resting / relaxation, in the form of a movie, was the order of the evening; my usual evening entails the playing of CDs and / or DVDs at some point, rarely anything too taxing on my limited resource of stamina. Admission time; I did sleep through some of the movie but, come the time when my beloved was ready for bed I was feeling wide awake. I wonder if my readers will understand the sensation of being simultaneously wide-awake and yet 95% drained of energy both physically and emotionally.

You will have noted that as I headed to the bedroom, to join my beloved, the signs were not exactly propitious. Those forebodings were proved correct! As I prepared for bed a generalised sense of discomfort / dis-ease overwhelmed me and, the night turned out to be one of tears, screams and bellowed expletives.

Restless legs took control after an initial burning sensation of sore tenderness took control of my toes, and that alongside of a tortuous throbbing ache in both knees and hips. Within a short time, a tenderness of the armpits lymph nodes began to rage alongside screaming aches in elbows and wrists. My mind seemed to be preoccupied with a relentless darkness as I sought for comfort and rest.

The darkness of the room created an overwhelming sense of isolation, in spite of the fact that my beloved was soundly sleeping beside me, almost oblivious to my cries to and against the Almighty as I tossed, turned and struggled to find a state of composure. The blessed, albeit temporary, release of sleep took many hours to attend to my needs.

Another day of rest is desperately sought and, I little care whether it’s opioid, prayer, or straightforward Mother Nature assisted.

CHANTING PSALMS out of ANGER and FRUSTRATION

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

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

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

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

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

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

Falling Prey to my inner wimp

Although most days, of late, have tended to feature a time of sustained pain and discomfort, its manner of onset varies considerably. Sometimes an ache in the palm of the hand and fingers, or more frequently wrist, can be set off by simply holding a newspaper or using a laptop computer for just a  few minutes;  at other times  a throbbing ache in the elbow provides  the warning  sign. Unfortunately, on far too many occasions, the ache soon spreads through the arm as a painful throbbing occurs in the elbow, and a nausea-inducing discomfort in the armpits, apparently emanating from the lymph nodes, spreads through the upper arm.

The application of splints, and various supports to palm, wrist, elbows, and even shoulders, serves to alleviate the pain and discomfort but, otherwise, I have to resort to pain-killers, tramadol proving the most efficacious, alongside these external aids.

Although the donning of a shoulder support can proffer relief, it seems quite strange that many times my body screams out for the removal of even non-constrictive cardigan, shirt or pyjama top. It’s not at all unusual, at these times, for me to lie down with both arms stretched behind my back, upper arms clamped tightly to my sides, to proffer a further degree of alleviation from the nausea sensation.

Discomfort in feet and toes frequently occurs alongside the pains in upper limbs and torso, and it feels as if they scream out to be relieved from any (otherwise un-noticed) constriction of socks and outer footwear. The past twenty-four hours presented me with a monstrous mix of aches and pains, necessitating the donning of additional supports for a considerable portion of both morning and afternoon, yesterday, as the full gamut of excruciating aches and pains in torso and limbs took up residence. The following nocturnal hours presented little opportunity for sleep, or even the slightest hint of relaxation; restless legs and pain skewered toes, alongside sundry discomforts in upper body and limbs, resulted in expletive laden tirades, against the night, emanating from my lips.

Helen, my beloved OH, and our faithful hound Piper, each attempt to console me – frequently to little apparent avail, as I fall prey to my inner, hopeless, wimp!

one helluva night - with tears to follow

Well that was one helluva night! No, I don’t mean it was brilliant or enjoyable, indeed the opposite would seem to apply. For a large section of the night, which should have been spent either at rest or asleep, excruciatingly discomforted aches, pains and jarring niggles, exceeded there usually capacity to catch me by surprise.

What started as the all too familiar ultra-sensitivity of my toes, swiftly became an all-consuming ache of limbs and torso. Throbbing knees and aching hips, joined aching wrists and elbows in some kind of exotic fandango. Between the familiar aching pains, sudden jolts, as if an electric charge had been applied, seemed to run through torso and limbs before resolving to a generalized heavy ache with only occasional jarring painful explosions.

Supports applied to wrists and elbows seemed, at first, to alleviate the intensity of the discomfort but it only took a short while before the discomfort intensified once more. Similarly, lavishing my toes with moisturizing cream proffered temporary relief. After about 1½  hours, which seemed like an eternity, I was able to settle down with a vague hope that sleep would soon overwhelm me.

Come morning, I was pretty much my usual sleep-deprived self but, I managed to doze off for a few daylight hours. At first I didn’t seem any worse for the extremely disturbed rest and sleep pattern of the preceding night but, later, became quite weepy and tearful, to the extent that I developed an intense fear regarding the procedure (arthroscopy) to be carried out on my right knee on Saturday. My thoughts ran wild in anticipation of worse than usual debilitating pains to further detract from my quality of life.

At heart I’m a total wimp, I only cope with quite regular pain, discomfort and, occasional bouts of brain fog, because I’ve not been granted an opt out clause. My sense of ill emotional ease intensified as the morning went on; both my beloved and Piper attempted to console me even though I strived to reject their consolation.

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!

a modicum of exercise

Although I have never considered ME as primarily a ‘fatigue’ condition, pain, cognitive difficulties, postural hypotension, sensitivities to sound and light, and post-exertional-malaise, being more distinct identifiers, the past several days have found me in a quite sustained  state of shattered exhaustion. Intermittent, unrefreshing, nocturnal episodes of sleep, do little to relieve fatigue, even as a component of quite prolonged periods of (supposed) rest.

This afternoon, although still somewhat achingly tired, I took Piper for a walk, accompanied by ma belle OH, and, in spite of having to shorten the circuit on which we roamed, I felt (emotionally) better for the exercise! Admittedly, a couple more painkillers were necessary to ease the aftermath experience.

All in all, the presence of Piper as a family member has proved wonderfully therapeutic, and the warmth of his adoring gaze is more than sufficient to melt the heart of this hardened cynic, regardless of how under par, physically and/or emotionally, I may be feeling, as the blessed recipient.

Much as our beloved pet enjoys both bounding leaps, and slow, nose led, meanders around the garden, he has developed an undue readiness to dig holes in the grassy area, frequently followed by an attempt to sneak back into the lounge before we have a chance to check the cleanliness of his fore-paws.

As recompense for the brevity of this posting, I’m adding a few recent snapshots of the garden (and Piper in it’s environs)

The Guilt of a Spoonie Wimp

Convulsive weeping, the pattern of my day; a sense of failure, weakness or betrayal, none of it makes sense! After weeks of feeling further under par, a decision to increase my dose of amitriptylene (up to now used to deal with some nocturnal discomfort) towards an anti-depressant level just made me feel worse. Persistent headache, intensified abdominal bloating & discomfort, loss of appetite (difficulty swallowing even), postural hypotension alongside a more general dizziness, all seemed to coincide with the increased dosage.

Recent weeks had seen a marked increase in my stress levels, as work on the new extension kitchen, dining room, and walk-in shower, dominated my conscious awareness of every day-time, and the added confusion of life in total disarray in other parts of the house proved more burdensome than either of us had anticipated.

Sleep and pain patterns have become even more erratic than usual but then, always at the back of my mind was a proposed visit to Worthing to celebrate the Golden Wedding Anniversary of my brother & sister in law, Dave & Janet. Having plucked up courage to book an hotel room, sometime last week, for a four night stay, the imminence of the travel became more real but, I felt the special nature of the occasion would somehow enable me to carry it through.

Today was to have been the day of travel (more like travail) – a journey of approx 6 hours duration – but although the car was packed with our case and rucksack, necessary medications having been packed last evening, the event was not to be. At present even the five to ten minute journey into town can seem like an arduous expedition so, I should have realized that this event was not to be. First mistake was removing myself from the duvet lair, after an all too familiar restless night, over an hour earlier than is my norm.

Wham, the enormity of the proposed venture hit home with pile-driver force; I would love to have been there for the celebrations but, my own wimpish nature resisted the travail. That’s when the tears got into full flow, a deep rooted feeling that I was really betraying my brother & sister-in-law, I began to wish I didn’t love them, that would have made it far easier to turn down the invitation. The vicious circle followed – yes, I should make the journey, no matter the deleterious effects that may have – no, I’d be foolish to travel but, that’s letting my brother down.

Sadly, the journey is not taking place, the sense of guilt weighs heavily. 

Dis-Arming Dis-Ease

Being tickled so hard that hysterical laughter turns into a painful scream, I wonder if you know that feeling, because that’s how I feel now except without the laughter! Suddenly the newspaper felt too heavy, or at least too awkward to hold; the wrists succumb to a pounding tympanic throb, so I apply the necessary strappings. Next the inevitable discomfort in the armpits, suddenly the skin feels at least two sizes too small for the torso it embraces; that aching laughter sensation, referred to earlier, holds both inner upper arms in thrall. I try, with only a modicum of success, to dampen the nausea response by clasping the upper arms almost tourniquet tight against my body.

To an onlooker it must seem as if I’ve been suddenly shocked into a     distorted catatonic state.  

It takes some time before I pluck up courage to extend my forearms away from the upper-arm locked torso. A sigh of relief murmurs forth, as I release myself from this temporary stasis; it’s almost as if I’d been holding my breath alongside clasping the upper arms to torso.

It’s proving difficult to catch up on some much needed rest, last night had been one of intense dis-ease best summed up by my posting on facebook at 3.30AM:

Once I stop feeling
my skin's being flayed
whilst discomfort dances
leadenly

over joints
and muscles
then

I may get
some much needed
sleep

Night night folks!

I’m afraid the “Night night folks” was a little too optimistic. I finally managed a little, scarcely refreshing, shut-eye from around 6.00AM.

Moany Moany not Mony Mony

"Which way do I turn?" and "dare I turn?"; these related questions come to the fore at erratically scattered instants of day or night. In the past few days, tortuous pains have danced from left side of the back (a hollow bruising ache just below the shoulder blade, as if one was undergoing a sequence of blows from a felt coated lead lump hammer) to a more acute nagging pain in the left side of the back just above hip level. These sensations tend to overlap with a more constantly recurring gnawing ache just under the rib cage and, other old familiars returning with a vengeance. 

 A nausea inducing throbbing pain, on the inner side of the upper left arm - accompanied by a tenderness in the armpit, frequently prevents my attaining an appropriate period of rest during the night. As exhaustion overtakes me mid-afternoon, a gnawing ache, occasionally becoming more acute, in wrists and elbows necessitates the donning of wrist splints (both arms) and the taking of additional pain killers.Today, this discomfort in upper limbs vied for honours with a throbbing pain around the knees which seemed to ease slightly with the donning of elastic supports.

 A sensation of giddy light-headedness, alongside not infrequent griping reminders of my IBS and diverticular problems, does little to help me feel at ease. Despite all the above, I did manage to enjoy a celebratory lunch at The Park yesterday for our wedding anniversary but, even that didn't come payback free!

minor travel major travail

Just where is that emotional stamina hiding; come to that, it would be useful if I could uncover a resource for topping up my rather limited levels of the physical variety. After a short trip across the Pennines, about which more later, even my already constrained ability to concentrate on any sustained reading has gone into abeyance. At least I’m hoping it will return! No matter how much I enjoy looking out onto the garden, the heavily overcast and frequent rain-sodden days do little for one’s morale.

 

After a morning of extremely vividly disconcerting dreams, I finally felt sufficiently alert to remove myself from the bedclothes at around 11.15am, thirteen hours after availing myself of their embrace. As my beloved doesn’t go to her place of employment on a Wednesday it made the rest of the day more bearable. By about 4.30pm I felt it necessary to rest my eyes, at which point ma belle enquired whether I needed to lay myself down on the sofa. At the time it didn’t really seem at all necessary but, within half-an-hour my legs began to suffer a dull throbbing ache, feeling as if they’d been waterlogged.

 

Finally I had to admit my OH was right and, I really did need to lie down; no sooner had I reclined, in supine posture, than my wrists began their far too familiar nagging ache requiring a swift application of splint supports. Just another ordinary day!

 

                                                  ***

 

Now comes the report on that trans-Pennine journey, although, in terms of mileage, it was a short drive, to me the outward journey seemed a far too protracted arduous nightmare. Spastic colon, and acute diverticular discomfort set the tone of the adventure; within the parameters of a 70 mile route, I most urgently required a loo break on three occasions, the first of which required a diversion from the route we were travelling.

 

The SatNav redirected us, via the Old Skipton Road, across desolate sodden moorland. This route didn’t help at all as a kind of agoraphobic panic attack overwhelmed that attention which had previously focussed on my painfully aching abdomen. When we eventually arrived at the hostelry where we’d be spending the night, it was encouraging to see they had at least four draught ales on offer. As we approached our upstairs accommodation the heat in the hallway proved overwhelming, as was that which greeted us in the room.

 

That evening we attended a wedding party, the purpose of our visit, at a nearby Jacobean venue. On arriving at the venue, I managed ( whilst leaving the badly lit car parking space) to trip on a protruding step as ma belle and I sought the relevant hall entrance. The entrance was attained via an ill lit awning tent and, once again I tripped as my foot fell from the edge of the footway.

Not a good start; since my days as a union steward I’ve been well aware of health and safety issues, and the ill lit irregular causeway would certainly have been a major concern. As I’m prone to giddiness, and an associated fear of falling (such that I will only take a shower when my beloved’s around), I wasn’t able to relax at all.

 

Inside, the venue was disconcertingly sprawling and, we failed to find the quieter lounge. We spent best part of an hour, but seemed much longer, sat at a table in the bar area chatting with one or two family members. Just the noise of chatter became overwhelming; part of my illness means that I find it difficult to cope with crowds or noise so, really, I was in the wrong place. My total alcohol intake was less than half of the pint of ale I’d imagined I would enjoy.

 

Ten years on from succumbing to this condition (moderate Myalgic Encephalomyelitis), it becomes increasingly hard to understand that I once, not only coped with but, whole heartedly, enjoyed a quite gregarious lifestyle, pubbing, clubbing, politicking, wining and dining, leading  house groups and more!

 

Back at the inn, the landlady turned down the radiator at our request and supplied us with an electric fan and opened the skylight, the only window in the room, to allow some air to circulate. Most of the night was spent restlessly on top of the bed; music from nearby filled the air until 2.00am after which I became aware of the swoosh of traffic, presumably from the motorway. Further distraction was proffered in the form of other guests returning to the inn, as the floorboards groaned and roared their disapproval of human footfall. A worn out washer on the hot tap in our en suite, erratically appliquéd a kind of water torture onto the other aggravating layers of distraction.

 

Having missed out on food the night before, I was looking forward to breakfast but even this hope remained unfulfilled. Still feeling rather stressed, and upset by and commenting on my trip up experience of the previous evening, I interpreted a nervous smile from Helen’s brother as a sneer and duly threatened to deck him. At that point I quit the breakfast room.

 

Our journey back across the Pennines was a far happier experience, travelling predominantly on motorways advocated by the disembodied voice of the SatNav.

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.

No rest for the shattered!

Yesterday was the busiest day I’ve spent for a considerable period of time; our friends Roy & Jacqui visited us mid-morning for a little chat. The course of the conversation, over the next three to four hours, was by turns both intimate and challenging, and covered reflection on our sundry life experiences, matters of faith, healing, and the place and limitations of reason. The person of Jesus the Christ proved a central focus to this time of fellowship.

A couple of hours after our visitors departure, Helen and I headed off to the Acorn Centre, where Helen helps as a volunteer, for their Christmas Party. The traditional Christmas dinner was cooked to perfection, and the chef received a very warm round of applause just as he’d intended to sneak quietly away! We enjoyed a quiz which followed the meal; the fact that ours was the winning team probably added a little extra to our enjoyment, and we were then entertained by the music group whose enthusiasm always compensates for any musical limitations. After three hours my body was telling me it was time to go and, I felt quite shattered by the time we arrived back home.

Although I felt achingly tired, by the time I attempted to immerse myself in the duvet realm, an intense excruciating discomfort in shoulders, armpits and upper limbs generally, made it impossible to find a restful posture. My whole body was convulsively shuddering as I, repeatedly, failed to find an appropriately comfortable position. A primary distraction from this upper limb discomfort was my essential response to the, all too familiar, erratically spasmodic intestinal convulsions.

An additional dose of tramadol was called for, before a sufficient easing of the upper limbs and torso discomfort was found. Having got into bed at around 22.15hrs, I eventually found a degree of comfort by 01.45hrs but, even then, an overactive/over-stimulated mind ensured that I remained awake until at least 06.00hrs.

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"

where to begin

Just another typical morning; cup of cold coffee on the bedside table, clock radio spewing out a familiar mix of entertainment and banality and, I’m still abed, even though the ante-meridian hour has passed eleven!

Today’s the day I’m to visit my GP to check whether the medication, which she prescribed three weeks ago, is assisting me with sleep. Problem is, after the first couple of nights the familiar routine of restlessness, coupled with fitful brief snatches of slumber, still prevails. Most of the time, after a predominantly restless night, I’m drowsily awake around the time my beloved leaves for work (around 7.30am) before drifting off into the land of dreams. The period of drowsy wakefulness is, generally, when my beloved places a (hot) cup of coffee on the bedside cabinet [see opening paragraph].

For all the intermittently fluctuating pattern of sleep, my vividly Technicolor dreams frequently veer towards a nightmare scenario, one where the goal always slips from one’s grasp as one runs, walks, or crawls desperately towards it; walkways erode and crumble beneath ones feet, a doorway inevitably narrows just as you attempt to squeeze through, a bus departs just before you reach the stop. Normality and fantasy indelibly intertwined.

Sundry muscular and abdominal aches and pains, doubtlessly, contribute towards my fitful sleep, as well as the frustration of my daytime hours. I shortly go and see the doctor but, where do I begin? Suddenly I realize the appointed hour has arrived and, walking stick enabled / encouraged, I make my way to the Surgery.

On being called in to the consulting room, Dr D makes me feel immediately at ease. She notes the spinal related nerve pain in my left arm but, is more intent on finding out about my sleeping habits; meantime, a regime of occasional ibuprofen alongside the tramadol should be maintained to alleviate the sundry aches and pains.

The GP has suggested that I should try taking the mirtazapine at around 6.00 – 6.30 in the evening. The thinking goes that, as I’m really drowsy in the mornings, the mirtazapine is probably contributing to the drowsiness and, if taken earlier (than is normally suggested) it may well help induce sleep during the appropriate nocturnal hours. The doctor suspects that the dreams may well have been heightened by the medication but, that should settle down in due course; she also said that she would be contacting Julie at the Chronic Fatigue Unit, with a view to my having a refresher course to help me with my “pacing”.

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.

Oh What A Night

It was another one of those, fortunately not too regular, nights of erratic and painful discomfort. As I needed to be up and about this morning, at a much earlier hour than usual, I decided to take a shower before retiring au lit. One (at least this one) would expect a late evening shower to prove an aid to relaxation and rest but, that wasn’t to be the case.

Firstly, my shoulders didn’t seem able to find a comfortable position whichever way I sought to settle down for some much needed slumber. Next the calf muscles kept tortuously spasming and, in next to no time a painfully aching lead laden hollow sensation in my left wrist and forearm colluded in the protest movement. Having applied my wrist support, to alleviate the agonizing discomfort, I felt ready once more to enter the land of nod but a rebellious body refused to comply with its own needs.  That’s the point when the expletives came into play as I got myself out of bed and paced around the bedroom and landing.

 On returning to bed my ribs and flesh felt  as if they were disconcertingly trapped in a non-elastic skin whilst, simultaneously, an adequately loose fitting pyjama jacket suddenly felt unduly constrictive.  PJ’s duly removed, I felt that settling down for the night would now follow just as naturally as day follows night; wrong again! Wilfully directed arms and legs flailed, this way and that, as comfort became a completely elusive goal. By 3.45am, still uncomfortably restless, I decided to take a couple of tramadol 50mg capsules and, within half an hour I began to feel much more relaxed and eventually managed to snatch an hour or two of slumber. 

 I suppose that, at the back of my mind, the prospect of having to emerge at 7.00am to insert a couple of suppositories, in preparation for a 9.10am appointment for a sigmoidoscopy at the District Hospital, wasn’t totally conducive to getting a good night’s sleep. On normal days, the period between 7.00 and 10.00am frequently proves conducive to some most refreshing rest; it’s almost as if an awareness of missing out (on this familiar luxury) had militated, somewhat perversely, against my taking advantage of more usual hours of nocturnal rest.

This morning, I was actually admitted to the consulting room a few minutes early and, much to my relief the sigmoidoscopy revealed no abnormalities but, an appointment has been made for me to undergo a full colonoscopy in one month’s time.

as boldness dissipates

Last night, once again, sleep had no intention of meeting a need; for hours on end it refused to intervene in response to my bodies requirements, restlessness reigned supreme. As we moved into the mid-morning hours a familiar quandary returned; do I just rest here in the hope that much needed sleep will catch me out or, do I get up and put on a bold face as I struggle to stay awake.

The boldness swiftly dissipates as excruciating discomfort becomes the latest manifestation of tiredness; Malcolm the bold crumbles into Malcolm the wimp. By the time in the early afternoon that my physio arrives, for a chat and application of the magic needles, tears are ready to well up. The tears are sourced from a deep rooted frustration at the sundry disabling ailments that have plagued me over recent years and, the fact that they're such a cause of worry and concern for my beloved. 

a little p e m goes an awfully long way - and I just wish it would stay there!

The mood of thankfulness and rejoicing soured a little, come early evening. On a note of bubbly confidence I suggested, much to ma belle's surprise, that I might join her on the grocery shopping expedition; that was a mistake. No sooner had we stepped inside the store than a rather generalized sense of queasiness overwhelmed me; first thought was that it may be a panic attack but, my efforts to take slow deep breaths made little difference, the discomfort was of a distinctively physical nature and that's when my awareness that there is not a public loo in Waitrose was re-awakened. So home it was, a rather weepy - almost self-pitying - Malcolm headed back to the car to be chauffered home. I suspect that post-exertional malaise, in response to the previous days activity had finally kicked in. Shattered exhaustion, a feeling that my ribs had undergone a kicking - a deeply bruised sensation apparently emanating from inside the rib cage, and haphazardly spasmodic contractions of the calf muscles served to refocus my attention away from the earlier contentment to an obsessive awareness of my own discomfort.

By 9.30pm, a sense of excruciating tiredness left me with no other option than to ascend the wooden stairs. Things then took a turn for the worse, as a nauseating discomfort in both upper and lower limbs militated against the possibility of finding any posture that proved conducive to sleep. First I applied wrist splints to counter the intensely painful aching void which seemed to have taken over the position normally occupied by radius and ulnar. The attempted relief led to a further numbingly tingling sensation that on previous occasions it had served to relieve. A couple of hours passed applying and releasing wrist supports, all to little or no avail. By this time an aching tenderness emanating from (the glands in) the armpits necessitated the removal of my pyjama jacket. Sometime post-midnight I was able to grasp a few hours of intermittent sleep but my emergence into the new day was somewhat marred by a gut-wrenchingly painful sustained bout of diaorrhea.

As the day went on I began to feel somewhat more comfortable and, this afternoon, managed a little trip down to Brookside Nurseries before delighting in a little light pottering around in the garden.

to bed perchance to sleep ...

This is the time for sleep. Try frustration instead of sleep; no thanks, I've just tried that and found it wanting! That was last night's pattern, finding myself totally mentally alert when I should have been resting. Perhaps it was the expectation of a sound nights sleep, following on from a day of plentiful fresh air and a more than modest (but not dangerously so) degree of exertion.

Yesterday was one of those spoiling days, once the bright sunshine had broken through; a cool breeze played wonderful counterpoint to the sun's warmth drawing me out from my domestic habitation. Having returned from a mid-morning visit to 'Open Church', where I consumed a cup or two of coffee as accompaniment to a bit of social chatter, I ventured up to the pond to feed the fish (goldfish and golden orfes) and felt suddenly inspired to apply a fresh dose of teak oil to sundry items of garden furniture.

After grabbing a bit of lunch, I returned to the garden and gave the lawn its first mow of the season and also took a few macro snapshots of some of the spring flowers. After that rather full days activity, I had anticipated a better nights rest than that which I was about to receive. Having settled down in the duvet realm by 11.00pm, at 1.30am I switched on the bedside radio to listen to Radio 3 as I'd not yet managed even a brief snatch of slumber. A further 4 or 5 hours later and I'd still not managed even forty winks. It somehow felt like an overactive mind had determined to thwart my bodies rest requirement.

Sometime between 7.00am and 11.00am I did capture a few spasmodic moments of shuteye whilst purportedly listening to Radio 7 and Radio 2. I then allowed myself to slowly emerge in to a new brightly sunshiny day as I attempted to release a modicum of vibrancy from my shatteredly sleep deprived  body. I headed up to the arbour seat and was swiftly transfixed by the scuttling and chattering activity of the sparrows in the adjacent shrubbery, and the flittering of peacock and white butterflies over the rockery. As I rejoiced in the new seasons growth, I was almost able to forget my general state of shatteredness.

I rejoice and am glad in this day the Lord has made.