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.

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.

Shatteredness Conundrum

A SHATTEREDNESS CONUNDRUM


It's not so much the chicken and the egg as the pain or the tiredness.

Does weariness simply allow a latent pain to exaggerate it's presence or, is it the tired bodies vulnerability that allows a deep pain and discomfort to take hold? Today, a day of only minimal exertion, a sudden onset overwhelming sense of fatigue was swiftly subsumed into an entangling, nerve jangling, multiplicity of pains.

These acute pains, not the overly familiar dull aching wearying variety, swiftly took hold in ankles, knees, armpits and wrists.  The intense discomfort resulted in a sudden welling up, and gushing forth of tears; tears of frustration and, temporarily, despair.

I hate to take my pain medication other than when it's absolutely necessary although, I'm coming back to the notion that I should take the occasional pre-emptive dose as well. The problem then arises as to how I discern whether a lower or negligible level of pain is the result of this pre-emptive strike or, could it simply be a normal spasmodic reduction in pain level.

Stormy Weather

My most recent flood of tears almost put the current downpour of rain and hail to shame. A prolonged wearily exhausted phase of being has not always been easy to cope with; even an almost constant bruising constricted sensation across chest and upper abdomen fails to overwhelm the spasmodic aches and pains in the upper limbs (apparently emanating from the armpits).

Having emerged from the duvet lair, some thirteen hours after retiring thence, I went downstairs to prepare a chicken, peppers and mushroom casserole for dinner, as well as parboiling some potatoes in water infused with my special blend of herbs and spices. By the time the initial preparations were done I was ready for another rest; I duly retired to the lounge and enjoyed watching our avian visitors in the garden. Goldfinch, coal tits, blue tits, house sparrows, blackbirds and wood pigeons all vied for my attention.

After lunch we transferred some video footage of Wesley Chapel’s Anniversary and rededication service, from 1994, to DVD. It was good recognizing some old familiar faces in choir, congregational pews and pulpit, and it’s especially interesting as that is now Helen’s home chapel, just as it was for my parents in their later years. As I finalized the DVD a fascinating Human Planet documentary, which had just started on BBC1, captured our attention.

We both enjoyed watching the Senior School Choir of the year semi-final and, the three choirs chosen to go through to the final coincided with our selection. Shortly after that programme had finished my problems began; as I sat down following a visit to the loo I suddenly found myself breathless as my chest and abdomen felt as if they were being held in a vice and, I felt my colour drain away (the pallor duly observed by my beloved) and felt very nauseous. The crushing aches and pains were vying for attention everywhere from shoulder, through the torso and down to the lower limbs. As I gasped for breath, the tears began to flow and I felt terribly afraid, just feeling totally terrible. The tears flowed for at least twenty minutes as the sundry symptoms became unbearable.

I am just relieved to feel normal (with my old familiar lower level aches and pains) once again. as I sit and enjoy the company of my beloved!   

and suddenly ....

And suddenly the floodgates open, not a result of any dramatic trauma more like tripping over the everyday! A renewed period of feeling below par, even by my own undemanding standards, inevitably gnaws away at ones self-esteem. Whilst I have so much to be thankful for I still can’t avoid feeling guilty for the restrictions my own health problems place on my beloved.

Today, just ma belle’s suggestion that we go for lunch to the local café was sufficient to set the tears a-flowing; we both enjoy our visits to Café Culture but, with the recent return of quite excruciating pains to my lumbar region, I felt I would be much more comfortable staying at home. Almost immediately the pangs of guilt set in as I felt that my not feeling up to dining out was simultaneously denying my beloved the pleasure.

In recent weeks I’ve been spared the (formerly routine) aches and spasms of the lower limbs, feeling that at least part of me is finally on the mend but, the pains in the arms – starting as if a sustained attack (in vicinity of the elbow) is being made on the funny bone, before gnawingly boring into the armpit and, at other times a nausea inducing ache in the wrist travels slowly up the arm – seem to have increased in frequency as if by way of compensation.

The simple task of removing the ornamental rock from our main aquarium, in order to remove the excess algae, on Monday afternoon, led in turn to painful pulled muscles around the right shoulder blade which subsequently seem to have joined forces with more acute pains in the small of my back.

And suddenly ….  I play the wimp again!

of appointments and pent-up frustrations

Last Saturday found me out in the garden doing a bit of lopping, pruning and trimming of sundry shrubs. I must have spent a little over an hour enjoying a gloriously sunshiny day, as the shrubs ensured work for idle hands. Two days later, by way of reward for these endeavours, a day of numbingly aching body and soul when even switching on a kettle seemed far too great an effort.

Mid-way through my waking hours on Tuesday, I started to feel reasonably recovered (from the tortuous preceding day) so there was little to suggest the tear-fuelled emotional response to a visit to my GP’s surgery the following day.

My appointment on Wednesday afternoon was with the same GP referred to in the post “once more to the land of A&E”, and therefore a most positive prospect. Once in the consulting room, the atmosphere seemed overwhelmingly business-like as, within the allocated 10 minutes, he wanted to focus solely on symptoms of breathlessness and chest pains, thereby excluding all other aches, pains and painful disorders, from the equation. He said he was going to arrange an appointment with the cardiology department and was also sending me for further blood tests, as well as a Glucose tolerance test (requested by one of the practice nurses who had been checking my NHS Health Check results). It was also mentioned, in passing that I’d not kept appointments with the Chronic Fatigue Unit and, they had now discharged me! For the truth of this see my post “psycho-fatigue”, (which describes my departure from an assessment visit at which I informed the psychologist I wouldn’t be paying any further visits to the Unit and, hence, discharged myself).

As I headed back home, with my beloved, I was overwhelmed with a pent-up frustration and tears flooded out. I felt as if I was being treated as a chest-pain, not at all as a person! When I got home the tears flowed even more freely and I declared that I wouldn’t bother with any of their b…dy tests. Being told that I’d failed to keep appointments at the psycho-fatigue unit, a false surmise, turned out to be the final straw that released all the pent-up frustration.

Ma Belle swiftly contacted the surgery to inform them how distraught I was after the appointment. A short time later I received a ‘phone call from the same GP I had seen earlier, as he wanted to understand why I should be so upset and, at the same time apologized if he’d misread the situation and seemed too business-like!

Early evening our doorbell rang – an unexpected visitor had arrived! The doctor, having finished his surgery duties, had in his own time called around to visit us and enquire what he could do to help! I was assured that he hoped to take a holistic approach and, he once again apologized for misreading the situation. Talk about going the extra mile! The visit ended most amicably and I will be seeing him again on Monday for a further twenty minute consultation.

Meanwhile I’m bracing myself for tomorrow’s early morning bloodletting session at the District Hospital.

Of Celebration and Payback

And just when you think it’s all going well, the old devil returns.

 During the past few weeks I’d been enjoying copious doses of Advent and Christmas music, predominantly of the sacred variety, as I looked forward to our quiet Christmas celebrations (just ma belle Helen, Beth and myself). To be perfectly honest, I was quite surprised by how well I’d managed Christmas decorations, food preparation, and sundry minor pressures such festivities may place upon one. Admittedly, the run up to Christmas week wasn’t without an occasional venture into the realm of shatteredness, with spasmodic eruptions of acute pain.

As lunch-time on Boxing Day approached, my chronically throbbing aching wrists allied themselves with intense convulsive pains in both biceps and shoulders. It felt as if my torso was being crushed whilst, simultaneously, being stretched on a rack. The effort of holding the DVD recorder’s remote control, in readiness for starting off a recording, seemed to set every nerve-ending on edge; a kind of pulsating bruise surged through my forearms and shoulders which, in turn, contributed to an all pervasive feeling of nausea.

For the first time in ages, the degree and intensity of pain and discomfort produced a convulsive sobbing response.

I love and adore my family, every moment spent with ma belle amoureuse affirms the privilege of love, and I always wish to affirm all the most positive values and emotions that the season represents. The joy of the season is somewhat marred by the realization / recognition that even my somewhat low-key exertion, as we prepare and celebrate, seems to demand a degree of excruciating payback in return.

Only here to serve ... and cause upset

Much as I love, and am determined to defend, the NHS it does seem to have a recent record of setting out to upset me. After the last minute arrangements for (and subsequent abortive attempt at) my colonoscopy, a similar last minute arrangement has been made for me with radiology for a barium enema.

This morning having just emerged from the duvet realm at around 11.30am, I opened a small package from the District Hospital informing me of an appointment at 8.50am tomorrow. Of course the preparatory evacuant was to have been taken at 8.00am and then between 2.00 and 4.00pm today. I duly 'phoned the hospital to say that I would be unable to attend but they said that if I forego my lunch I could take the first dose of the preparation right away and, I could take the second dose at 5.00pm!

No sooner had I put the 'phone down than the realization struck home that as I'd not yet had breakfast and, the lunch that I'd have to forego was also the last food permitted until after the treatment; I wouldn't have had any food since teatime yesterday until after the procedure tomorrow! Once more I picked up the 'phone to ring back and cancel the appointment; at this point I became a stuttering, stammerring, tear drenched wreck!

When my beloved returned from taken a little service at the local Methodist Homes for the Aged, she rang the hospital to re-arrange my appointment for one weeks time.

I have only just noticed that the appointment letter was dated 13 May 2011 but the envelope postmarked (franked by the hospital) 17 May 2011 - this delay accounts for the 'actual' last minute / too late notification! Perhaps ConDem induced staff cuts could be held responsible for this lapse in communication.

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. 

The Opening of the Floodgates

Just suddenly found myself to be a totally blubbering wreck. I've no idea where the floods of tears came from but, it certainly must have performed some type of tear duct flushing. I was quite happily surfing the net when, suddenly, the armpit discomfort forced me into pressing my upper arms tightly against my torso; it was also essential to put on a wrist support / splint to remove the numbingly aching pain in hand and forearm. Having, from necessity, shut down the PC, I went downstairs to join ma belle.

As my beloved will be seeing her friend this evening, she wondered what I'd like for lunch and profferred the suggestion that maybe I'd like to take advantage of the OAP concession at the local chippie. The fish and chips from this particular outlet are really delicious, a wonderful inexpensive treat, so the suggestion should have been greeted with unconditional enthusiasm! Unfortunately, with my haphazard assortment of gastric disorders, the last couple of times I've enjoyed this feast there have been subsequent repercussions. As this thought passed through my mind, the almost hysterical tearful effusion occurred.

At this point my total distrust of the GPs I've visited recently came to the fore; I've increasingly been made to feel that I'm a nuisance and a waste of their time (wittingly or unwittingly I don't know). Since concentrating on treatment of GORD, any mention I, or my beloved, make of my underlying ME-CFS symptoms / ailments, are swiftly brushed aside / ignored. On the last visit I was asked, in an accusatory manner, why I'd been seeing different doctors (from within the practice), ignoring the fact that on several occasions follow-up appointments booked with the same GP, either online or at the surgery, have subsequently been cancelled, via 'phone calls from the surgery, and alternatives have had to be arranged. I'm also dependent on the availability of ma belle chauffeuse, to get me to the surgery, so also have to work around this; the alternative would be a two bus journey each way and, since 2003 I have found this mode of transport extremely stressful.

When I went to the hospital's phlebotomy department yesterday, for sundry samples to be taken, I was reminded that a consultant endocrinologist had informed the practice that certain of these tests, to monitor my condition, should be carried out at least every six months; this has not happened for the past few years (probably since the previous senior partner, who was my primary reason for remaining with the practice, retired from the practice).

Perhaps the fact that I'm currently on antibiotics, in addition to sundry other medications, suggests that I'm at a particularly low ebb. The opening of the floodgates proved difficult to understand, nonetheless, as I haven't been feeling at all depressed (just ill)! Maybe I'm  a little more frail (and vulnerably de-energized) than usual having missed my most recent physio / acupuncture treatment; the physios services were required, to deal with some very urgent cases, by another district within the health authority, which no longer employs anyone in an equivalent position, quite likely a result of the ConDems ideological cuts. 

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

P.S. a rather more upbeat postscript to this posting can be found on my 'Mal's Murmurings' blog, apropos the floodgates.

and today the tears

And today is the day the tears start flowing. Suddenly, for no apparent reason, a tingling around the eyes and a sense of melancholy. I brush the tears aside, take my courage in both hands (and legs) decide to try a little walk up the road. For the last couple of days such efforts have proved abortive but, it's worth a try; anything's worth a try just in an attempt to overcome this randomly imposed suffocating sense of isolation.

I suspect that the antibiotics, prescribed on Saturday, are having an adverse effect on my already bothersome intestines; even attempting to consume a hot beverage seems like a (time) trial (of the how long before I start feeling nauseous variety). Yesterday seemed somewhat better than the previous day, less of the floatingly giddy light-headedness and, managing infrequent snacks as and when the desire arose. So, things are improving but, after a better night's rest, I've sunk into this pit of moroseness. As I write this, I'm laughing at my pitiful self; in attempting to express how despairingly low I'd started to feel my spirits are somehow lifted.

I'm sure some of the cause is the waiting game, waiting for the gastroscopy and then for the results, awaiting notification of when I'll be in to have the rodent ulcer excised but, most importantly, like a BP CEO I'm wondering when I'll get my life back! The fact that I've scarcely enjoyed a really restful nights sleep, since my overnight hospitalization five weeks ago, certainly doesn't help.

Anyway, I set off for my brief walk and met an old friend. Immediately the "how are you" question was asked the tear ducts shifted into overflow mode and, I had no option but to amble back home. Called my beloved on the telephone, as she was putting in a few extra hours at work - Wednesday being her usual day off - and thankfully she just finished off her current task in hand and headed homewards. Ma belle has arranged, and will be chauffering me to, an appointment at my GP's this afternoon. I feel as if a bit of reactive depression is setting in, a response to the sundry ailments, and probable reactions to medication, that have beset me over the past several weeks.

At least with ma belle by my side, and the old faithful walking stick in my other hand, I gathered the confidence to stroll up to the local shops, the furthest I've ventured for the past few days, without feeling too overawed by the entailed exertion.

Tomorrow my physio is due to visit me to administer the therapeutic needles and, I'm hoping that will aid the relaxation process both physically and mentally.