ill at ease and strange release

Strange as it may seem to some, my best, most refreshing, sleep frequently occurs after the returning daylight hours have become established. No matter how restless, torturous, or even relaxed the preceding bed-rest hours have been, any sleep attained after say 08.00hrs always seems to be the soundest. As for night’s, and when applicable daytime’s snatched sleep or rest, I have to admit that I feel truly blessed whenever I manage to emerge from the experience feeling properly ‘refreshed’, an event that may occur as often as one occasion in the week. How blissful it is to have temporarily overcome the phenomenon of ‘unrefreshing’ sleep.

After that rambling prologue, I now move on to today’s difference. Having retired to the duvet lair at 23.00hrs, last evening, I managed to snatch my first spell of sleep after 02.20hrs. By 04.10hrs I briefly attained a state of semi-alertness which was followed by intermittent bouts of sleep and waking alertness. At around 9.00am, my beloved took Piper out for his morning walk having first assured me that she would be back before 10.00am, a little earlier than my usual emergence from the bed’s hold over me. The reason for this assurance was the impending arrival of workmen at 10.00hrs to start work on re-vamping our downstairs loo.

I drifted back into the realm of sleep only to be startled back to the awoken world, by a stridently ringing doorbell, at around 09.30hrs; I hastily crawled out of bed, donned dressing gown, stumbled down the stairs and swayed giddily as I opened the front door. The workmen had arrived early, much to my beloved’s surprise, when she arrived back at 09.53, and very much to my weary annoyance. I returned very briefly to the duvet realm, before arising to a host of painful ailments affecting head, torso, upper and lower limbs. My mood, most definitely, was not of a very beneficial nature as I contemplated the prospect of minor additional exertion required to ascend, and subsequently descend, the staircase each time I required the loo during the next few days. Spastic colon and erratic bladder function conspire to ensure that the additional effort will be required on multiple occasions per diem.

As the stress of the situation took hold, simple misunderstandings rapidly amplified themselves into major crises; it didn’t take long before I found myself unloading a plenitude of expletives towards all other occupants, resident and temporary, of my immediate lebensraum.

A Long Night's Journey Into Daze

By last evening, the efficacious application of sundry supports, and a small opioid dose, had brought me back into a more at ease body to contain my soul and mind. So far all was going well and an hour before my proposed bedtime I took 30mg amitriptyline along with 50mg tramadol to, hopefully, pre-empt a bout of restless legs, throbbing knees, and ultra-sensitivity in my toes.

Well, shall I let you in to a little secret; the pre-emptive strike was a dismal failure on this occasion. Within half-an-hour, of laying under the duvet, my knees were attacked by a sharp throbbing ache which, apparently, demanded of my unconscious that they should be flung out from the side of the bed in a way that switched between an unsupported taut outward stretch and, a limp folding at the knees, as calves crashed against the divan base drawers with toes trailing on the floor.

I frequently attempted to change my sleep preparation posture, laying first on one side then the other, laying on my back, on my front, and sundry intermediate stages. Suddenly, the ultra-sensitivity of my toes added to the problem; regardless of whether top, bottom or side of my toes made contact with the bedding a chinese-burn sensation caused an unpremeditated jolt of my lower limbs. After two-and-a-half hours of variable intensities of discomfort there was little chance of an imminent visit to the land-of-nod, so I picked up my tablet pc, plugged in headphones, and caught up with a couple of TV programmes. Six hours after succumbing to the lure of the duvet realm a couple of hours of light sleep took over.

A mid-morning entry into the clothed arena didn’t seem to offer much improvement. After ten minutes browsing a magazine my wrists began to ache, swiftly followed by the hollow ache emanating from the armpits. Wrist, elbow and shoulder supports were gradually donned with little sign of the discomfort easing. A dose of tramadol seemed to take for ever to kick in; a generalised discomfort hadn’t settled until some time after my beloved had returned from her preaching appointment but, unlike the previous Sunday I was able to finish dinner preparations and really enjoyed the fruits of my labours.

mutual aid society - Malcolm & Piper

Throughout the morning’s persistent discomfort, and distress, our devoted hound, Piper, never strayed far from my side, snuggling up alongside me in a truly therapeutic manner; without him my screams of frustration would have been considerably louder.

and suddenly they flow

and suddenly they flow

“pains come and go

and tears flow

a creeping fermentation

of an odious decay … “ - Malcolm Evison 060818

Today has not been the best of days, nor yet the worst; it has been one helluva roller-coaster ride of both sudden and slow onset aches and pains, a turbulent discharge from both physical and emotional reserves of stamina. Tears have flowed abundantly on a few occasions as I’ve attempted to explain the frustration of living with a chronic illness, along with several subsidiary ailments, each randomly producing varying degrees of aches and discomfort, ranging from reluctantly accepted background throbbing, rumbling aches, to sudden sharply acute attacks of pain.

As I’m also in my mid-70s (age wise) thoughts of mortality are all too rarely far away, but come to the fore with each new acute onset of pain and discomfort.

Over the past weekend I’ve experienced symptoms quite akin to a flare-up of both gall-bladder (cholecystitis) and diverticular disease in relatively acute form, neither of which do much for one’s morale! At times I had to wonder if my alto and tenor burps could present a non-dissonant counterpoint to the bass line of flatulent release.

An underlying throbbing ache and discomfort in the abdominal region is interspersed with a sharper more stabbing intermittent pain. I’m still struggling to come to terms with a sharp stabbing pain which intermittently occurs at a point apparently just behind the bottom left hand side of the ribcage. Erratic bowel behaviour has long been a problem, swiftly putting paid to any notion of getting away for a break, but in any case the sensory overload of a short car trip into town can frequently prove overwhelming.

An attempt on Monday to hold and read a rather slim paperback book led to a need to don wrist & palm supports, elbow supports, as well as having to stretch my arms across my back, in an attempt to overcome a nausea inducing hollow ache emanating from my armpits. These are not at all uncommon symptoms as they tend to occur when holding a newspaper, using a laptop or tablet PC, just one of the little joys of being.

Attempting to explain the frustration I felt, bordering on despair at times, to my beloved OH just led to an overwhelming flood of tears from yours truly and, quite understandably caused upset to her.

***

This morning, Tuesday 070818, ma belle called the GP practice to see if I could get an appointment, as whenever I check up online they never seem to have any appointments available during the next couple of weeks, and thought they would maybe prescribe some antibiotics. (Regular readers may remember my report of a previous gall-bladder flare-up being recognized and successfully treated with antibiotics by my own GP, and the following arrangements for  a cholestectomy –  an operation which had to be cancelled as, in the meantime I succumbed to a minor stroke - http://sinnaluvva.blogspot.com/2017/06/on-mend-and-back-again.html and http://sinnaluvva.blogspot.com/2017/10/on-opening-and-closing-of-doors.html

are the posts that refer).

I duly received a call back from a nurse practitioner who decided that as I wasn’t at that moment in discomfort, I was still abed and not yet having breakfasted, an appointment with a locum for Thursday morning was made. As I explained that I hadn’t attempted to eat anything this morning still being in the duvet realm, she commented that still being in bed at shortly after 9.00am was a wonderful luxury for the retired. Fortunately I refrained from cussing as I explained to her that no, it isn’t a luxury as for the past 14 years I’ve required a bed rest of  around12 hours per day, sometimes more, (non-refreshing sleep being a component of, and exacerbating the distressing symptoms of ME).

Well, I’ve managed to get thus far without any tears but am now desperately in need of a rest; well it is 11.30am … time for wrist and elbow supports once again, the armpits … etcetera, etcetera …

And on it goes but, at least for now, I’ve staunched the flow.

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.

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.

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.