FRUSTRATIONS of a Medical and Medicinal Kind

This post also appears on 'Mal's Murmurings' under the title 'CONSULTATION FRUSTRATION'

___________________________________

It shouldn’t really be like this; anger and despair turn out to be the result of a visit to the GP. Having finally yielded to my beloved’s advice, I got around to arranging an appointment with my local doctors practice. My reluctance to make this appointment is the knowledge that they’re only equipped, or allowed the time, to deal with a specific singular ailment, not a complex multiplicity or whole people.

First annoyance came when he (being the doctor) stated that the medications I was on had a tendency to conflict / counteract each other to some degree. Considering the length of time I’ve been on this assortment of potentially self-conflicting cocktails, I begin to wonder why the practice had been oblivious to this over the course of the past couple of years.

When conflicting advice, between medics in the same practice, as to whether certain meds should be used pre-emptively or only when absolutely necessary, adds a further quandary for the patient as to the efficacy of using the practice at all.

Anyway, a couple of the prescribed medications are no longer to be used; they are replaced by a single different medication. Worrying for me is the following statement, on the Patient Information leaflet:

 take special care if you:

suffer from conditions like abdominal pain, muscle weakness, mental confusion.

[there are times – regularly for the first two, occasional for the latter - when I can tick all those boxes]

The doctor further suggested that I should use co-codamol instead of tramadol, even though I’d had to stop using co-codamol, because of the effect it was having on various abdominal organs, a few years back. Tramadol, thankfully, remains on my prescription.

Next came the little prep talk suggesting Graded Exercise Therapy would help, even performing the same limited exercise on ‘bad’ as well as ‘good’ days. Obviously he has no understanding of what a PwME’s (even moderately so) ‘bad’ day is like. I explained that even the visit to the opticians, a limited amount of exercise involved, was sufficient to cause payback, his response was that obviously was too much exertion!

Well, it seems that I’ll have to stick with my own pacing regimen which essentially curtails any exertion on bad days and, ensuring that I always have some spoons in reserve when I exercise on good days.

The preceding events, at least their physical & mental toll, necessitate a temporary postponement of my visit to hospital for further blood tests

I’m quite proud of myself for refraining from the use of expletives during this little rant; expletives remain in my personal domestic space for the time being

_________________________________

Malcolm Evison doctor even told me that there's no connection between overload of pain stimuli and the corresponding nausea that I experience !!!

jet powered fluttering

I love these bright sunshiny Spring days; I was going to say mornings but, by the time I have manoeuvred myself from the divan, and into daytime apparel, ante-meridian is already veering toward the post component of the day. At this time of the year I’ve at least got a few more daylight hours to appreciate, even when the body achingly summons me to an afternoon nap.

What I don’t like about these bright days is the omnipresent temptation to do a little pottering about in the garden. Don’t get me wrong, I loved gardening when it didn’t have a payback clause attached, whereas now it’s far too easy to forget the limited number of spoons available.

When I succumb to the garden’s lure it so easily leads me to forget about “pacing”. My beloved is always good at reminding me to slow down, or stop, these times of physical endeavour, especially when I’m enjoying the change from my otherwise sedentary lifestyle. Actually, much of the time, the word sludge seems more appropriate than sedentary to express how this mode of being feels. Yesterday a short time spent mowing the lawn, albeit using an electric mower, seemed to have used up most of my 24 hour stamina supply.  

It’s always wonderful to hear the buzzing hum of the bees, both bumble and honey, as I walk past the heather laden rockery towards the wildlife friendly reserve at the far end of the garden. Primroses and cowslips are thriving and the nettles are springing back to life; the chatter, piped and fluted songs, of our avian visitors make an idyllic background as I move into reclining mode in the summerhouse.

 Even the fluttering butterflies seem like jet propelled aircraft in comparison to my enforced lethargy.

living moderately

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

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

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

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

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

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

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

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

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

  

back to NORMALITY?

So much of our lives are spent simply letting regular life experiences wash over us. Passive recipients of what ever opportunities life offers us we, of necessity, avoid reacting to most peripheral events. Life goes on as normal but we may suddenly be ambushed by limitations to what has, so far, been our normality. On many occasions the limitation may simply be with regard to the specific situation, in which one finds oneself, for which we have had no prior experience or necessary practice. 

Variety happens but, it does not always seem to add spice to life; as a matter of fact much of the variety may be of an unwelcome kind. Health-wise it has been a case of swings and roundabouts; just as one celebrates alleviation of a particular neurological symptom they seem to stumble upon a variant manifestation of the same underlying condition.

This morning, my body reminded me of the limitations imposed by a combination of neurological illness and the general aging process. It is almost as if there are (at least) two distinct normalities, that of the mind and spirit struggling with that of pure corporeality.

 It is several years now since I first had to learn, experientially (the hard way), how to pace myself; having reluctantly accepted that I must now function on/from a lower plateau, than was my earlier norm, I still feel a sense of shock when any jolting reminder of this limitation catches me out.

As the sun was shining, I set out this morning, with a walking-stick supported spring in my step, to collect a prescription from my GP’s surgery, a loaf of bread and a bottle of milk. The Surgery isn’t any  more than a seven to eight minute walk (even accounting for my limitations) and the bakery and grocery stores are passed en route. That would seem to be a little light exercise but, I hadn’t accounted for meeting up with a couple of friends during this restricted travel. I stopped and spoke to my first friend J for two to three minutes and a couple of minutes further on in the expedition encountered  friend C with whom I had a little chat. 

On arriving at the Surgery’s reception I had a couple of minutes wait before I picked up my prescription; by this time I was feeling quite light-headed and aching limbed. What I’d forgotten was that, as part of my current ‘normality’, standing to chat seems to reduce my stamina levels more swiftly than the brief walk itself! It was with great relief that I was able to sit down for ten minutes at the local pharmacy, in the same parade of shops as the grocery and bakery shops’ whilst they dispensed my sundry medications. By the time I got back home I was feeling achingly shattered!

*****

I suppose that this ‘shatteredness’ shouldn’t have been so surprising, considering that the previous couple of days had been quite eventful, even incorporating a visit to A&E and a consequent overnight stay in the hospital.

Saturday morning, at about 2.30am, a sudden sharp bruised pain down the left hand side of my rib cage, accompanied by an acute stitch-like pain emphatically (horizontally) underlining the breast bone. The pain seemed to ease as I clasped the painful area with my right hand and, it eventually disappeared after about fifteen minutes. So far, so good but, the bruised aching pain kept nagging away at regular intervals in the course of the day. Around 8.00pm, the pain returned with a pallor inducing vengeance; a hollow giddiness occupying head and torso left me feeling quite disembodied. At this time my beloved repeated an earlier offer to take me down to A&E and, this time, I instantly accepted.

The receptionist (at A&E) thought I needed to sit down and said that ma belle could log me in. Although my blood pressure went soaring, I was relieved that the ECG showed normal coronary activity. When the doctor examined me she suggested that I had a chest x-ray and blood tests but, as a follow up blood test would be required in the middle of the night, had me admitted to hospital. The doctor had inserted a cannula in the back of my hand which unfortunately, and somewhat dramatically, fell out as I moved into the X-Ray department leaving a splendid crimson blood trail on the floor. The nurse swiftly grabbed a pad to which I applied pressure to stop the flow from the distended vein, whilst he swiftly mopped and disinfected the contaminated floor area.    

Eventually a porter wheeled me up to Bolton Ward where they initially set me up on a heart monitor. Everyone with whom I had contact on this ward made me feel like a person, rather than a client, leaving me most impressed with their friendly and efficient attention to their duties. The clinical support auxiliary very swiftly, and without any fuss, cannulated the median cubital vein; nursing staff always seem to perform these tasks better than doctors, presumably because they have more experience.

My second lot of blood samples were taken at around 3.00am on Sunday and later the doctor told me that the tests were negative. Once this was ascertained a nurse came and removed the heart monitor. By 10.50am my discharge papers had been prepared and, I only had to await ma belle chauffeuse to whisk me back home. I was assured by both ward sister and the duty consultant that, even though the pain was musculoskeletal rather than cardiac in origin, ma belle had done exactly the right thing in taking me to A&E.

It was wonderful, and seemed extra special, to share Sunday lunch (which I had partially prepared the previous afternoon) with my beloved but then, every moment shared with my better half is very special.

Changing Conditions

 

Sometimes conditions affect one in unexpected ways. I found it difficult to cope with the heat on the warmest of our summer days, flagging with fatigue after less than half-an-hour sat out in the garden, in the shade of a parasol. The only answer was to retreat into the house, draw the curtains, and switch on the
oscillating fan.

 

As daytime temperatures have cooled down, and an occasional chilly dampness returned to the equation, some of the old familiar aches and pains have decided to re-inhabit my corporeal being. This correlation of events, leads to a suspicion that these aching components are perhaps more to do do with arthritic and rheumatic twinges than the underlying neurological condition. No sooner have I proffered that suspicion than I recognised that a different interpretation was also plausible.

 

As more moderate temperatures returned, the temptation to tackle a few additional ‘light’ gardening and household tasks was all too easy to yield to. My main problem is a tendency to only listen to my body when I’ve almost drained my low stamina reserve. The trick of ‘pacing’ is to always keep a little stamina in reserve, otherwise any further exertion almost inevitably results in some kind of payback.

 

In the course of the past few days, a light giddily disorienting headache, accompanied by sudden onset pallor has been a recurring theme; my erratically disrupted sleep pattern (during my required dozen hours of bed rest) does little to alleviate such irritations. At other times the sense of being ill-at-ease within my own skin, a sensation that the skin is too tightly constricting the flesh of torso limbs and digits, proves grindingly nausea inducing.

 

I am thankful that, at present, the gnawing tenderness of glands under the jaw and in the armpits is only quite rarely experienced.

 

My beloved ‘Bright Light’ has been enjoying a holiday from the workplace, last week and this, but finds herself needing plenty of rest so, whilst I’ve always revelled in her company, we’ve been kept busy keeping an eye on each other, each making sure that the other doesn’t overdo things. My life has never felt so complete as it has in the time since meeting and marrying ma belle; her faith and loving disposition makes me feel privileged to know her.

no more the adventurer

You’d think, by now, that I’d have learnt to pace myself, after all the theory is quite simple! All one has to remember is to keep some physical (and emotional) stamina in reserve; one has of course always to remember how much lower the energy reserve plateau is than it was pre-illness onset.

 

 Before I succumbed to this condition, (moderate ME), I would think nothing of walking to work, being on my feet most of the day, then coming home, going out to concert, gig, cinema, exhibition preview, attend house group, and later return home all on foot. Very few hours abed would serve to restore energy levels to the necessary level. Socializing always came easy, only rarely did any event attended / ambience prove at all stressful. Thankfully, I had no idea that this comfortable mode of being was going to be taken away from me, unless by the grim reaper.

 

Yesterday morning I’d reduced my bed rest time from 12 to 8 ½ hours, as we were expecting delivery and erection of our summerhouse, which had originally been promised for the 8^th July, and ours was the delivery team’s first drop/job timed for an 08.00 - 10.00 am slot.

 

I was already feeling a sense of giddy light-headedness, and general nausea inducing discomfort, before the delivery team were due to arrive. When they arrived, at around 9.00am, I went out to make sure that they were going to position the doorway, and windows in the required direction. They wondered whether I wanted it positioning in such a way that one array of windows would be running parallel to, and approx 2’6” away from the back of our prefabricated garden shed. I quickly put that right but I was also informed that they would need to chop a significant branch from a tree behind the base that we had prepared, and which had been inspected and approved by someone from the supplying merchant who made no mention of this requirement. [Obviously the base was inspected for suitability without any attention being paid to any other environmental factors which may impede the erection of the aforementioned building!]

 

By this time, the frustration of circumstance seemed to exaggerate both the nausea and the crushing disorienting sense of light-headedness. I reluctantly gave them the go-ahead to dismember parts of the tree before ‘phoning my beloved at her place of work; having informed my OH of how crap I was feeling and warned her that I would soon be likely to turn the air blue, she said she’d pop back to deal with any problems that may arise. No sooner had I put the ‘phone down, and started a necessary/essential period of rest on the sofa, than one of the workmen tapped on the door. They had noticed both mould and a split in the back section of tanalized timber, rending it unfit for purpose. At this juncture I let loose a string of invective concerning the company that they were working for and, said that as far as I was concerned they could take it all away, refund our deposit and give us a couple of hundred quid compensation for all the inconvenience we’d been put through. I also suggested, somewhat more measuredly, that they may as well wait for my OH to arrive and see what she thought.

 

Having taken away all the components of the summerhouse at ma belle’s request, they said that they would get the supplier to ‘phone her at work to discuss compensation and re-arrange delivery and erection of a building ‘fit for purpose’!

 

It was only after the kerfuffle had passed that I fully realized just how shattered I was. The (supposedly good) weather recently, above average temperatures, sunshine and cloying humidity, always play havoc with an already erratic body thermostat. Not only had I been deprived of necessary bed rest but, I was also receiving a degree of ‘payback’ for some minimal over-exertion in terms of cooking, domestic chores, entertaining and dining out with our special friends, Peter & Pamela, who had traversed the Pennines in order to see us at the weekend.

 

As I suggested earlier, what once I would have taken in my stride would now appear to be the most foolhardy kind of adventuring! 

 

 

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

 

I commented on Twitter yesterday:

 

 this time the outpouring
of expletive laden invective
fails to alleviate
the nausea inducing malaise
- otherwise I'm OK!  

apologia

Yet another afternoon spent in the garden, this time in the shade of a parasol beside the pond.

 A couple of weeks ago I’d never have dreamt

of making such a statement having undergone an extremely protracted

autumn and winter of cold and damp weather,

  the wet aspect being but a pale reflection of last summer’s weather.

 In the course of the last couple of weeks we’ve been blessed

 with many warm sunshiny days which inevitably

turned ones thoughts and footfall towards the garden.

 

The preceding paragraph, or words to similar effect,

 were to have been the opening of a web log posting a fortnight ago but,

much to my surprise, I’ve now been able to spend

 even more time in the garden although the weather has once again became more changeable.

I’m still not able to cope with very warm humid atmospheres;

 it’s largely been a matter of choosing the appropriate times and circumstance

 to venture out. I’ve been taking a few snapshots of aspects of the garden’s flora and fauna and,

undertaken some gardening chores

without exerting myself beyond reasonable self-imposed* “pacing” limits!

 

On many occasions, feeling a little guilty

about neglecting the blog, I’ve settled down beside an inert keyboard

with every intention of resuscitating it

but the necessary emotional stamina seems to have been

in extremely limited supply.

 

++++++

 

 

*more honestly “health-imposed” but one likes to feel, to some extent,

in charge of one’s own destiny.

 

 

 

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!

Pacing can be a Pain

 

 Since yesterday lunch-time the discomfort has become quite extreme, in fact I don’t know why I try to soften the sentiment by substituting the word discomfort for what has ranged from excruciating pain through agonizing, nausea inducing, aches.  For several days back pains have flared up, presumably related to the herniated disc, to the extent that it has proved virtually impossible to find a comfortable position seated, reclining, or attempting to shuffle about, for considerable periods of time.

 

For a couple of days my lower limbs have had that achingly rubbery feel that I always used to associate with a bad bout of flu. Cervical and axillary lymph nodes, in neck and armpits, have once again taken on a most disconcerting tenderness, as if striving to draw my attention away from those aches that seem to flit between elbows and wrists. Gosh, as I write this down, it’s just dawning on me what bodily excitements I bear witness to.

 

Chronic abdominal spasms, and erratic spasms of irritation in the upper digestive tract, make almost perfect companions to the not infrequent chest pains. It’s almost as if some great controller has decided that no part of my torso or limbs should feel lonesome; I must admit that my body’s erratic thermostat, with the dance between overheated and over-chilled clamminess, is beginning to feel absolutely normal.

 

A couple of weekends ago, I was so proud of my achievement in attending two events

of moderate socializing on consecutive days, but within thirty–six hours payback had well and truly kicked in. On the Monday, after the social weekend, it came as something of a surprise to hear my GP utter those unexpected words, “don’t push yourself”. When it comes to an illness like ME, there couldn’t be any more sensible words of warning. Trouble is, on those rare occasions, when one feels able to manage a modest amount of exertion, it’s not always obvious where the boundaries lie.

 

Pacing is so vital but, at times, one seems to be set on an almost interminable learning curve.  

Transitions

Yesterday, a (temporary?) reprieve from a snow-laden garden brought out my latent - albeit limited - energy reserve as I manfully retrieved a spade from its hibernation; the wheelbarrow was also rescued from its angled reclination as I set to work. The task I set myself was to transfer some of the contents of the compost bin onto the garden's flowerbeds. Fortunately, I had the good sense to limit this exertion to two barrow loads; my state of being, this morning, confirmed that any further exercise could have proved disastrous. Shattered-ness has been retained at a degree only marginally greater than is my norm. Pacing is all!

Meanwhile, a slightly more passive pursuit has been the commencement of a project to transfer some of my vinyl and audio cassette collection to mp3 format. For far too long these musical and dramatic artefacts have been squirrelled away in sundry, non too easily accessed, hidey holes. I must own up to my preference for the sound spectrum derived from vinyl rather than CD but, unfortunately the turntable that obtains the best performance is also the most temperamental! For the vinyl transfer I'm using this hand-built turntable via a USB powered and connected phono pre-amp; for the cassette transfer a USB connected tape2pc deck suffices.

The transfer operation has more to do with potential ease of access, to the performances, than the overall sound quality; it has certainly taken me long enough to embark on this mission and, I'm hoping not to be too disappointed with the result! First transfers have come out better than I'd anticipated but, there's still a long way to go!

Seasons In The Sun

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

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

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

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

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

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

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

tempus fugit - carpe diem

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

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

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

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

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

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

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

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

Transitional Demands

What a pleasant surprise; I’ve just been counting the cost and it isn’t half as costly as I’d anticipated; admittedly, sometimes the price is paid later. As a parallel to climbing the property ladder, if one takes too many risks with their “pacing” they have to be prepared for landing up in negative equity. I’ve recently been trying to extend the boundaries of my pacing regime, how else am I going to know what I can manage but, at the same time, I’m listening to the signals my body transmits back to me.

We’ve recently decided on a course of revamping our bedroom, which requires a little shunting around, and spasmodic removal of, the extant furnishings and accumulated detritus. Yesterday was the time to assemble a couple of wardrobes, a task which at first seemed rather daunting, though it proved rewarding as one managed to satisfactorily assemble the said units (despite the manufacturers best endeavours to ensure the misalignment of certain component parts). It proved a rather perspirational endeavour, during which I several times struggled to ignore both pain and stamina thresholds before finally collapsing at the eleventh hour; not a moment too soon. Our friend John, who lives just down the road and had earlier proffered assistance, arrived on his white charger to finish off the task in hand.

An early night being required, by body and spirit, there followed a somewhat restless sedimentation of hours, exhaustion seemingly serving as a barrier to sleep. After 13 ½ hours of bed rest(lessness), aching joints, bones and muscles were hardly in any worse shape than has been the norm over recent months / years, and the brain seemed to be functioning as well as can be expected. A slow emergence into the daytime world was par for the course; sleep eventually caught up with me, early in the afternoon, as I listened (!) to Radio 4 with hands crampingly poised on my laptop keyboard.

For little signs of progress I give thanks but, I am intentionally avoiding any further exertion today, a fair reward for yesterday’s endeavour.

Slow Running

 

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

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

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

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

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

Body Talk

A crisp bright day encourages me to venture out for a stroll. My body instinctually vetoes the idea.

I know, on this occasion, that the body is correct – I’m quite used to listening to it these days – but the thought of a little stroll, accompanied by my very own breath ghosts remains appealing. Momentarily, a surge of resentment washes over me; why should I tolerate these corporeal restraints?

A searing bolt of transferred pain replies, as if to demonstrate the wisdom of the body. The spirit yields to the assured pragmatism of the flesh.

That which was lost is found ....

 

My old favourite, age, usage, and weather gnarled, walking stick has suddenly re-emerged on the scene after a couple of days absence. Great was the rejoicing in the land at this recovery, the stick and I go back a long way and, it’s always good to have a familiar and trusted friend readily to hand. After Friday’s recovery of access to a blocked website, it seems as if the age of miracles is not yet passed.

 

Altogether, it has been a much better day; sunshine replacing last night’s deluge, and a remission from the more severe pains that I had been experiencing. After lunch we took our freshly brewed coffee out into the garden, where we sat beside the pond. It wasn’t long before the urge to do a little pottering about arose, so my beloved went to change out of her Sunday best, whilst I (being perpetually scruffily dressed) was immediately ready to spring into semi-sluggish action.

 

I was able to retrieve some very rich compost from the bottom of our composter, to revitalize part of one of the borders, and sprinkled the remnants of some pre-packaged compost onto other border areas freshly relieved from the ravages of ground elder by my beloved. We really do make a great team, I’m frequently ready to watch whilst Helen does the grafting! Having thoroughly raked over these areas I was able to sprinkle a few teasel seeds into the prepared area. Other batches of wildflower seeds had previously been scattered into seed trays and, hopefully (by next Spring) we’ll have ample seedlings to transplant into our wildflower meadow area.

 

Being the day of rest, it seemed far easier to take my leave from the gardening endeavours whilst I still had stamina in reserve. Pacing doesn’t always come that easy!

 

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

The Morning After (the days before)

After yesterday’s bout of mat wrestling**, a fitful nights sleep is hotly pursued by an achingly battered and bruised Sinna Luvva’s emergence into the grey light of day. Lower limbs feel like they’re struggling through a vat of leaden sludge, and that’s simply the effort of releasing themselves from the duvet lair.

There’s no need to pinch me to check that I’m awake, rather than dreaming; every muscle and joint cries out to affirm the fact. I ache therefore I am.

At least every other day, for the past fortnight, has found yours truly engaged in performing some minor horticultural task. It’s quite surprising really, how much nurturing goes into the establishment and nurturing of the wildlife friendly area of the garden; even the transplanting of inappropriately self-rooted wildflowers, from cultivated to a more suitable site proves quite time and effort consuming.

On more than one occasion I’ve managed to overdo it; pacing isn’t quite as straightforward as I’d wish it to be. Although I recognize my limitations of physical and emotional stamina, it’s almost as if a little inner demon assures me that any perspirational endeavour that proves enjoyable can’t possibly have an ill effect.

Although I should know better, I still fall victim to the demon’s ploy. The spirit may be willing but, it’s the weakened flesh that pays the price. An increased tetchiness, and fog-befuddled thought processes, sits uncomfortably alongside the pains and aches that flesh is heir to.

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** for those readers who don’t follow / click on hyperlinks, I hasten to assure you that I have not taken up a new contact sport. The link is to my posting ‘The Heart Of The Matter’ on ‘Mal’s Murmurings’

Self Pity?

I currently seem to be sinking into the kind of morose, self-pitying frames of reference that used to be the result of excessive alcohol consumption. Perhaps the cause is the teetotalism that I’ve been practising these past few days; there’s just no winning in these situations.

Truth be told, self-pity is barely part of my vocabulary these days; I tend to cope reasonably well with the slings and arrows that ME/CFS ensures my flesh is heir to, I don’t really have much choice in the matter. Ever since Julie, at the Chronic Fatigue Unit, grounded me in the principles of pacing, I’ve managed to avoid the worst excesses of my former ‘boom and bust’ circle of activity/inactivity and, for that I’m extremely grateful.

What I’m finding difficult to cope with is the viral attack that my beloved currently has to cope with. I was already at a fairly low ebb, stamina-wise, before I started to apply myself to my nursemaid duties and, what really startles me, despite my youthful training as a student nurse, is that I’m finding it really difficult to cope with Helen being poorly. She is my life, my raison d’etre and, I just want to do more for her but feel quite helpless into the bargain. The self-pity is more rooted in this sense of helplessness, rather than the everyday reality of coping with me.

What's Going On?

By early to mid-evening I’m feeling decidedly battered and shattered, an aching hollow void seems to have hit the very core of my being. Somewhere along the line my ‘pacing’ seems to have gone awry, it doesn’t seem to require any marked over exertion on my part; these days, I’m constantly amazed by how much I used to cram into my day.

Just thinking about former activity levels makes me feel rather giddy so, where do I place the blame for my current functional disarray? Of course my normal routine was somewhat disturbed by dining at a slightly later hour, as my beloved and I were invited over to Janet’s (Helens sister) house for Dinner, or should that read Supper (I’m not too good on these social niceties), last evening. Much as I enjoyed the meal, and the company, it was succeeded by a rather disrupted nights sleep, in spite of which I managed to retrieve myself from the duvets enticements at a reasonably early hour.

I even managed to venture down to Open Church for a little natter over a cup of Fair Trade coffee and, on my return home got down to a bit more work modifying one of my web sites. In fact, the creation of some new web pages, and modifying the meta-tags etc. seems to have been a major preoccupation during the past few days. I’ve also set up a little showcase for some of my paintings on Imagekind.com – you’re welcome to browse and see the options for different size prints, mounts and frames, though it’s not compulsory!

Actually, the process of tapping out these few lines has made me realize that I’ve not been totally idle these past few days and, I’ve now yielded to the temptation to fill the inner void with a nice bottle of Chilean oak-aged Chardonnay. So my beloved and I are about to settle down in front of a hot cathode ray tube for an episode of Rebus (ITV1).

The Pace of Progress

Payback time, even when anticipated, hits home hard! Come to think of it, why should I even anticipate it; truth is, if I expect to suffer for my exertions, I only have myself to blame for overdoing it but, it also implies an acceptance of my limitations in the realm of physical and emotional stamina.

The real fly in the ointment is the virtual impossibility of determining the correct quota for a particular endeavour; on too many occasions I’ve discovered that intellectual and emotional endeavour can affect my state of physical well-being to an extent at least equal to the effect of purely physical effort. Trouble is, we have no real comparator for the effects of manual endeavour versus the intellectual/ emotional variety.

Just when I feel that I have “pacing” nailed, my spirit determines that a little extra necessary physical and emotional endeavour will give me a boost, a wallowing in the additional achievement! And, to square the circle, this is where the anticipation motif comes into play.

The last two or three days have found me floundering somewhat in the stamina stakes, a generalized fatigue accompanied by pains in hips, knees, calves, thighs, wrists and elbows, as well as an increased sensitivity to touch and unexpected sounds. The somewhat muggy atmospheric conditions, today, served to add a persistently intermittent nagging headache to my general malaise.

On a positive note though, on Tuesday I managed to start and complete my first new painting in over three years, increased the distance I walked on Friday (on top of which I made the venture with my beloved to visit a fireplace store to order a new fire surround and gas fire for our living room). Admittedly my stress levels are raised a little in anticipation of the impending disruption. The preparedness to even contemplate this event is a massive step forward. Of such little steps forward my temporary regression is made but, I move on in hope, buoyed up by the love with which I am surrounded.

As I've not managed many postings recently, this post also appears on Mal's Murmurings and Hirsute Antiquity