the best laid plans

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

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

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

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

bird talk - not quite up with the larks

Emerged from the duvet lair at 10.00am, my earliest time in weeks, and commenced preparing a spicy chicken, peppers and mushroom casserole ready for dinner today (and tomorrow).  It went down a treat served with my special herb roasted potatoes and sundry steamed green vegetables.

After lunch, ma belle went to a store across town to replenish our stocks of bird feed; at present our avian friends are enjoying autumn’s bounty but it won’t be too long before they become a little more reliant on our supplements. In recent days, we’ve had a goodly number of goldfinches on both of our nyjer seed feeders. Flocks of house sparrows ensure that we have to regularly refill our token seed feeder offerings; it’s also fascinating to watch their agile manoeuvres as they cling to wheat stems, seeking out the last fruitful ears. Blackbirds can occasionally be seen in the proximity of the bruised fallen fruit at the top of the garden but, they’re not visiting as frequently as they were earlier in the year.

It’s a really pleasant surprise to not be feeling totally shattered and, many of the familiar aches and pains are currently a mere shadow of their usually boisterous selves, with only a minimal need to resort to tramadol.

A Step Forward

Last night I managed to attend a Labour Party branch meeting, the first time for some months.  Colin Burgon’s most stimulating, inspiring and entertaining speech, “What can the Left learn from Venezuela?”, was followed by a lively discussion. A chance to replenish our glasses, hand-pulled ales being a rare treat for me these days, was followed by the more routine branch business. And, as if that wasn’t enough, I even managed to stay for some post meeting conversation.

Earlier in the day, I’d been seriously wondering whether it would be yet another occasion for me to proffer my apologies. After 13 -14 hours of bed rest / restlessness, it  had required a tremendous effort of both willpower and physical stamina to remove myself from the duvet lair. The gamut of emotions and felt body temperature was extremely broad, both limbs and torso felt shudderingly cold during the first hour or so, applied hot water bottles making little apparent difference. After two discomfortedly restless hours, au lit, the situation had reversed as perspiration oozed from head, torso and limbs.

Cramping pains in the left upper arm, spasmodically accompanied by aches across the upper chest and both shoulders, and a painful tenderness under the chin, conspired along with abdominal bloating to ensure that sleep remained a distant dream, or vain hope, for the next few hours. The gnawing spasms in the left upper arm persisted well into my ex-bed waking life.

Having experienced that degree of dis-ease in the preceding 20 hours or so, it came as a pleasant surprise to be able to participate in the LP meeting. Today I’m experiencing a little payback, a tawdry collection of gut-wrenching abdominal grumblings, searingly painful sinuses, aching limbs, jangling nerve ends and, an underwhelming sense of exhaustion. In terms of morale, the meeting / socializing experience, on this occasion, far outweighs any consequent additional discomforts.

refreshed ... ?

Wow, it’s already 17.30hrs and I’m just beginning to feel awake. Having slept quite soundly, albeit intermittently, retiring au lit shortly after 22.00hrs last evening and emerging from the duvet lair at around 11.00hrs this morning, I should have felt refreshed, right! Truth be told, I can’t quite remember when I last felt refreshed / really awake during any morning or afternoon but, things have got much worse since I started taking the amitriptyline.

Had a telephonic conversation with the duty doctor this afternoon; “Mirtazapine, Amitriptyline and Tramadol, they’re all sedatives”, he says. I explain that I’d only just taken a couple of tramadols today, only resorting to them when absolutely necessary. I suggest that maybe I should ditch the mirtazapine but, he thinks that’s a bad idea and comes up with the suggestion that I take it in the morning (instead of the evening) and just take half an amitriptyline in the evening.

The experiment continues …

Two New Poems on 'Mal's Factory'

I've posted two new poems - "SHATTERED" and "3.00am message to myself" - on 'MAL's FACTORY'

False Hopes

Regular readers may have noted my problems with exhaustion and a corresponding lack of refreshing sleep. Much of the time it has not been quite as simple as lack of refreshing sleep, more a lack of sleep (full stop). Out of my current average twelve hours bed rest requirement, a good night’s sleep could be as little as three and a half hours. It’s commonly said that as one gets older they require less sleep but, in my case, when it comes to the amount of bed rest required, this has most markedly increased.

In my youthful heyday the nights when I spent as much as eight hours abed (during the working week) were very much the exception; any hours in excess of this on non-working days were most definitely a pampering luxury, rarely a necessity as they are now.

I have been finding relief from some of the daily aches, pains and spasms, through a combination of tramadol, ibuprofen sundry orthopaedic supports; unfortunately, this still doesn’t prevent intensely discomforting pains interfering with my desire, from a state of shatteredness, to get some sleep. On such occasions, even lightweight pyjama jackets and / or trousers feel like intensely constrictive pain dispensers in their own right.

A couple of months ago the GP put me on a small dose of (the anti-depressant) mirtazapine in the hope that its sedative effect would help me get some shuteye. For a week or two it certainly seemed to be helping, even though it could still take a good couple of hours of excruciating tiredness before mind and body yielded to the land of nod. Some of the more intense pains in the region of the armpit and upper inner arm persistently nagged me back into a fully wakeful state. The doctor has now added an additional anti-depressant, amitriptylene, to my evening medications primarily for its supposed analgesic effect.

Having benefitted from a couple of pain-free, almost completely restful, nights my hopes really began to build up. Yesterday, having taken a couple of tramadol late morning, I felt no need to take further painkillers for the rest of the day, simply taking the mirtazapine and amitripylene in the evening. What followed was the most agonizingly painful sleepless night; admittedly it wasn’t helped by the highly amplified sound pulses emanating (until 2.30am) from a private party a couple of blocks away. A fair bit of time was spent stomping and cussing around the bedroom and landing, experimenting with wrist, shoulder and elbow supports, as well as consuming a couple more tramadol. The pain eventually began to ease by around 4.30am but, my mind was (by then) far too active to permit me any slumbers. Thankfully, by mid-morning I attained some brief, dream-filled, spasmodic patches of slumber.

I am attempting to retain a degree of hope that the recently prescribed medications will eventually fulfil their prescribed function but, it feels rather like a hope against hope!  

*********

since my previous post I have added a few more snapshots, 'the fuschia is present', to 'Mal's Picturebox'.

Of (Arm)Pits and Pendulum

A private resolve, to refrain from further postings until I felt more upbeat (on the health / well-being front), has now dissolved; I’m afraid that you’ll just have to take me as I am! I have no particular desire to be / become a moaner but, nor do I see any point of omitting mention of the sundry aches and, occasionally searing, pains ones flesh is heir to. For good or not so good, I am the result of all my life experiences whether chosen by or imposed upon me.


You may have previously gathered that this has not been one of my better years, any kind of relapse is unwelcome but, I still remain grateful that I have not had to plumb the most excruciating depths this wretched illness (M.E.) can deal out. I am most fortunate in only being a moderate sufferer but, even that moderation has at times proved quite intensely disabling.


And now, for the fifth or sixth time in as many days, I return to this same page in ‘Word’ in the hope that a sufficiency of stamina and a release from having to clasp my upper arms tightly to my torso (to alleviate the intense discomfort emanating from my armpits in normal free flow positions) may coincide to enable the completion of this posting.


The sharp nauseating ache and throb in the armpit is a tactile equivalent to chalk “squealing” across a blackboard. At other times an unexpected sound, not even necessarily of sufficient decibels to call a noise, can seem to sear through my flesh and crush the ribs. It’s almost as if my nerve-ends, in attempting to tread carefully on eggshells, all too startlingly draw ones attention to their own discretionary priorities.


I must admit to some uncomfortable guilt feelings in, once again, being / feeling unable to contemplate a few days away whilst my beloved has a break from work; to be honest, I even have to steel myself to cope with trips out to locations within ten or twenty minutes drive from home.


On the plus side I did manage a visit, with ma belle, to a local garden centre on Thursday and, we really enjoyed a visit to ‘Brio’ for a delicious meal yesterday afternoon. In the evening we immersed ourselves in Almadovar’s movie ‘All about My Mother’ which we’d recorded from Film 4. At lunch time today, accompanied by Cathy, we popped around to Café Culture for a little light lunch before returning home to wallow in the emotional riches of ‘Toy Story 3’.

The Pond Refreshed

Just a little celebration of our freshly cleared and cleaned goldfish pond!

Let It Bee

just a few busy bees in a corner of our garden

snapshots on Mal's Picturebox

I've just posted a few macro snapshots of bees on a globe thistle, Close Encounters - (Bees on a Globe Thistle) on Mal's Picturebox.

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”.

the process of aging?

So, it's come to this; old age has got me firmly in its grasp and, I lack the stamina to even attempt to wriggle free!Recent weeks have borne witness to a severe deterioration in my sense of dutiful pride. My old familiar shattering aches, pains and nauseating sense of exhaustion has driven me to .... ! 

Pride still has a hold, on me, as I struggle to prevent the awful truth being broadcast far and wide but, it's no point trying to live a double life, the strain is just too great.

The honest truth is that I've been driven to watching daytime TV and, all I plead for is a little sympathetic understanding! 'Bargain Hunt', 'Doctors', and re-runs of 'Only Fools and Horses' have managed to fill the aching void of inactivity with a modicum of determined purpose. If I can't work up the enthusiasm, or find the necessary energy reserves to purposefully surf the net, tend the garden etc.; at least the vacuum can be filled by my determination to switch on the television over the lunchtime period, starting from a period frequently less than one hour after my emergence from the duvet realm.

The truly worrying factor is that, not infrequently, I'm actually enjoying the viewing experience.

Since last Christmas, I seemed to have had some of my appetite for reading restored, politics, biography, theology, as well as a modicum of fiction once more became a part my daily experience but, for the past few weeks, my stamina reserves have only allowed (primarily superficial) casual browsing. I tend to place some of the blame on the warmer weather, which has a knack of depleting my already limited reserves of stamina but, I can't help wondering if in fact the real culprit is Father Time.

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.

a small blessing

Today, I managed to remove myself from the duvet lair before 11.00am and, to my great relief, experienced a most unfamiliar sensation, that of refreshment. I honestly can't remember the last time that I felt refreshed after a night's sleep. Fortunately the nigglingly painful spasms in my lower limbs, as well as a dull numb ache in my forearm and hand, were there to assure me that this wasn't just a dream!

********

I've also posted this on Mal's Murmurings with the title "light refreshment"

and suddenly ... SLEEP

Had an appointment with a GP yesterday afternoon. The doctor was quite firmly of the opinion that I was experiencing a reactive depression, an understandable response / reaction to the debilitating neurologically rooted myalgia, and the accompanying lack of refreshing sleep, which has been my companion for such a prolonged period; she prescribed 15mg Mirtazapine to be taken at bed time.

If the first night's anything to go by they have a wonderful sedative effect and should, hopefully, help bring about a resolution of my sleep deprivation problems. Last night was one of those very rare experiences where I remember very little between putting my head down on the pillow (lateish Friday evening) and slowly, but somewhat groggily, emerging into mid to late morning (Saturday). 

I must admit that, at first, I felt somewhat as if I'd been sledgehammered; it took until mid-afternoon before I started to feel properly awake.

A Delicate Balance

This has been a week of teetering on the edge, a time when both persistently nagging, and spasmodically intermittent, physical aches and pains have been accompanied by a lack of refreshing sleep. This unsettling routine has really started to play havoc with my already fragile state of emotional stability. One would think that as months and years pass by it would become increasingly easy (and certainly necessary) to come to terms with / accept the health-imposed limitations upon ones ability to socialize. For much of the time, this has seemed to be the case (for me) but recent days have found me frequently erupting into unprompted floods of tears, probably in response to an excruciating sense of exhaustion alongside a more vaguely defined sense of futility.

It only requires a small trigger to set these eruptions in motion, especially when one spends far too many hours enjoying / enduring one's own company. Yesterday afternoon should have seen a visit from my physio, to administer the acupuncture treatment but, late morning found me awoken from my somnolent state by a 'phone call from this practitioner to re-arrange the appointment as her fresh supply of needles had not arrived. Had I not already been feeling discomfortedly vulnerable I wouldn't have given the matter a second thought but, on this occasion, it simply served to exacerbate my physical and emotional frailty. My beloved returned home from work to be greeted by a blubbering, sleep-deprived, emotional wreck, and persuaded me to try to arrange an appointment with my GP.

This morning, just as ma belle was preparing to drop me off at Open Church, the doorbell rang and it was a pleasant surprise to find my friend Katie there. Katie and I went down to Open Church, for a cuppa and a chat, whilst my beloved set off for the Acorn Centre (where she's a volunteer helper on the computer course). Just the fact of being with company has a certain healing power and, Katie herself had just been feeling a similar need for company and a change of environment. This morning's event served as a beautiful counterbalance to yesterday's upset over the cancellation of my acupuncture appointment.

sometimes the sunny side goes face down

When one's horizon becomes restricted (by reasons of health) it can be quite remarkable how much more interest / detail can be found within the narrower constraints.

When the world is one's oyster it's far too easy to overlook / ignore the pearl (one so easily overlooks that which in other circumstances would be considered of greatest import); when one's scope / potential is more restricted even the most common routine or occurrence can become a pearl of great price!

Since 2003, my year of collapses, and succumbing to myalgic encephalomyelitis, I have gradually learned to appreciate much more of the minutiae of daily experience. A walk into the garden can be as refreshing as a holiday away, the garden itself provides such a wealth of (primarily pleasurable) sensory experience which, fortunately, is not of the overloading variety such as that proffered by a visit to a supermarket, cinema, or town centre store.

The pleasure, that it’s possible to receive in abundance from the commonplace, isn’t always sufficient to stave off an emotionally draining intensity of frustration with the inescapable limits to one’s socializing horizon. It not infrequently feels as if a degree of re-active depression is lurking in the shallows, rather than the depths, of one’s psyche!

upbeat to crestfallen and rising again

I am genuinely puzzled about where the daytime hours go, or at least how swiftly they pass; a sure sign that I’m not currently experiencing any of the more excruciating aches and pains that the flesh has so frequently become heir to. A little pottering about in the garden, the odd half-hour of book reading, listening to sundry genres of music brought to me via radio, vinyl, CD and MP3 – the time just seems to vanish.

Have to admit though that, having had the company of my beloved for the best part of 24 hours every day during the past fortnight, Monday did seem to drag somewhat at times. Even though I strolled down to, and enjoyed an hour at, ‘Open Church’ (in the morning), and performed some minor gardening chores later on, I became increasingly conscious of the absence of ma belle as the day went on and was just eager for her return home from her first day back at work.  I never cease to be amazed by the love and bond, between Helen and myself, which just seems to grow stronger with each passing day.

Reflecting on the rapidity with which each day passes by serves, quite simply, to amplify the rapid growth of that bond. It was twelve years ago last March that I first met Helen, we married eleven months after that; I just feel so fortunate in having such a wonderful partnership.

*******

“not currently experiencing etc…..” –  less than twenty-four hours after writing the preceding paragraphs, the sundry aches and pains returned with a vengeance. My colon seemed determined to painfully demonstrate its full range of spasticity whilst, simultaneously, my chest played host to a spasmodically pounding ache; at times it felt like a heavy-handed skiffler had chosen my ribs to replace his washboard.  Add to this the aching calves and thighs, sore throat and raw feeling sinuses and, you may get the feeling, it wasn’t too bright a start to the day. Having spent a goodly part of the morning in intermittent sleep, I was somewhat surprised to be overwhelmed by a heavy drowsiness in the early afternoon at which point I had to wrap myself in a slanket and seek at least a moderately comfortable posture to snatch a few more zzzzzs...zzsssss…

This morning time had moved into a long slow crawl, each moment hanging drearily on the edge of despair. At times I feared that I was heading back towards depression; reactive or clinical remains a moot point!

After a post-lunch catnap, I decided to sample a little of that which “hath charms”; in retrospect my choice of listening [The Randy Newman Songbook Vols. 1 & 2] may be considered odd in the circumstances but, somehow, even (or perhaps especially) the more cynical lyrics of Randy Newman, presented by the master himself, managed to lift my spirits.

from twinge to twang

Payback of an unexpected kind, for last weeks gardening exertions, slammed in to me this morning as I took a shower. The shower seat, which has previously proved an invaluable aid, turned out to be this morning’s site of reckoning. Having creakily lowered myself onto the said seat, the task of standing up again proved quite excruciating; the twinge experienced during the descent became a searing twang as my spine convulsed in the vicinity of the herniated disc.

Exiting from the shower proved an intensely painful nerve-wracking experience, and I subsequently needed the assistance of my beloved to towel myself down and get dressed. It’s just as well that ma belle’s recovery is, slowly but surely, getting underway.

A first attempt to move downstairs, walking stick aided, proved abortive. As I tried to lower one foot, onto the first step, a more sustained convulsive spasm toward the base of the spine erupted; a sudden leap up the pain scale from six to nine point five. Thus thwarted I returned to the bedroom and sat down for a little while until I summoned up the courage to attempt the staircase descent once again. With my right hand firmly grasping the handrail, and supportive walking stick in the left hand, I tentatively lowered the right foot onto the first step, and utilized the right foot lead mode on each subsequent step.

A sense of achievement and relief at thus shuffling down the stairs was its own reward. 

Nursing ma belle - update

Just been hitting the tramadol again, hoping that they’ll alleviate the excruciating painful ache in both upper and lower limbs. During the night it was my legs that succumbed to lightning bolt spasms whereas, by lunchtime, it’s now the biceps that are undergoing erratic spasming. 

It’s really good to find my beloved able to manage a little food today; after I’d posted yesterday’s blog my beloved’s condition deteriorated further, necessitating further contact with her GP practice who decided to change her antibiotic to erythromycin as well as prescribing some anti-sickness tablets.

No sooner had she swallowed her first erythromycin than it was vomited back; in the circumstances it was difficult to see how she could manage to take an effective dose. Throughout the day (yesterday) even bland fluids could not be retained, occasional sips replaced her normal enthusiastic swallowing.

Having managed a boiled egg and toast for breakfast, I prepared a couple of smoked haddock fishcakes for her lunch and she seemed to really enjoy them. It seems rather strange that when she was running a high temperature she was shivering and shuddering yet, today, with her temperature closer to normal she feels quite overheated. 

For myself I had a lunch of my own unique recipe spicy beef meatball pasta – I’d actually prepared it at the weekend and, in normal circumstances both casserole dishes would have already been devoured – which I didn’t feel would have been quite suitable for ma belle’s temporarily sensitive stomach. 

The moderately infirm nursing the infectiously incapacitated

Talk about the blind leading the blind; it's pretty much a case of the moderately infirm tending to the needs of the infectiously incapacitated chez nous. Fortunately the payback from Friday's exertions has not proved as severe as its promise (see previous post) so, I'm able to support my beloved who has succumbed to an infectious ailment. Her throat started to be irritatingly bothersome last Wednesday night and then, became a cause of major sleep disruption (for her) on Friday and Saturday nights. [As one frequently plagued with an erratically disruptive sleep pattern, I can normally be found jealously observing ma belle's usual mode of deep sound sleep].

On Sunday morning, feeling much worse, she visited the out-of-hours doctor who diagnosed acute tonsilitis and prescribed phenoxymethylpenicillin 250mg - two to be taken four times a day for seven days. At that time, although feeling totally wretched and wrung out, Helen wasn't running a temperature; this morning, after a further night of minimal restfulness, she was feeling extremely nauseous, running a high temperature and, simultaneously, teeth-chatteringly shivering. Having spoken to her GP, via telephone, the dosage of antibiotics has been reduced to 1 tablet four times a day.

I'm just hoping that I don't fall victim to the same infection as, ma belle already feels guilty at having me running around after her! I’m somewhat overwhelmed by the sense of helplessness I experience when my beloved is unwell; although I’m happy to prepare whatever she’d like to eat or drink, it’s hard to cope with the fact that she  can’t manage, nor has any desire, to eat anything at the moment. It’s altogether a quite unusual situation as Helen is normally the one who can be relied on to “eat what is set before you, nothing doubting”. As she has already been sick a couple of times, sans food, I don’t think it would be fair to coerce her into eating just to help put my mind at ease!

I suppose that, in a way, this reversal of roles helps me to further appreciate just how difficult it must be for my OH to cope with my ME related sundry ailments and pattern of remissions and relapses. A carer’s lot is not a happy one.

swings and roundabouts - a modicum of payback

Yesterday, the weather proved too enticing to resist so, having acquired a few more plants for the garden in the morning, I overcame my natural caution regarding over-exertion and created an additional (mini-)border as well as some plantings in pre-cleared areas of the extant ones. This task was left until later in the afternoon when the earlier heat had subsided a little. Once the plantings were completed we retreated to the house to relax.

Mid-evening the doorbell rang as some children had spotted a hedgehog under Helen's car, and they didn't want it to be accidentally run over. The hedgehog in question had meantime moved across to some decaying leaves in a corner of our pebbled forecourt,seeking shelter; to ensure that it didn't dash out onto the road, I picked up the hedgehog and took it to shelter in the undergrowth at the wilder end of the garden. The creature remained on the spot where I placed it for a few minutes before scurrying off, much to my relief, into deeper cover.

Although extremely / achingly exhausted before retiring to the bedchamber, sleep proved very difficult to come by - discomfortingly patchy at best, with erratically random bouts of acute nightsweats as a keynote. By mid-day (today) my whole being was a patchwork of nausea inducing aches and pains, abdominal, glandular and muscular. Abdominally, in terms of discomfort and activity, it seemed as if mild diverticulitis and IBS had conspired to optimize my sense of dis-ease.
 
Today has, of necessity, been a time of great idleness chez nous as I have little desire to exacerbate the situation.

Procedural Matters

Three days after cancelling, and rearranging, the hastily appointed barium enema, I received a letter from a consultant in the endoscopy department to say that they would shortly be arranging an appointment for this procedure. This epistle was dated 12 May but postmarked (second class) 19 May; my bewilderment / dismay at the too short notice received for the initial appointment may have been compounded by the fact that I was not aware at that time that any such appointment was being arranged.

Anyway, I’m pleased to report that the barium enema / X-ray procedure went without a hitch, even though it’s a long time since my recumbent (though not necessarily in total comfort) torso had to undergo so many postural changes in such a restricted (30+ minutes) period of time. (The exercise must have done me good!). Procedure completed, how wonderful it was for this hollow stomached being to return home, and ravenously devour a banana whilst awaiting the due sizzle time for the subsequent bacon butty; my previous solid food intake had been shortly after noon the previous day.

That gets me on to thinking about the privileged life I lead. Whilst so many in the world lack a roof over their head, access to a ready supply of drinking water and food in their belly, I can eat and drink at whatever moment suits my whim. I adore, and am adored by, my beloved wife, companion and lover Helen and, have two wonderful step-daughters. As long as we stand firm against the Tory / Lansley menace, future generations will also have the opportunity to access the same freely available National Health Service, not at all dependent upon one’s ability to pay, whose services are very much appreciated (despite minor glitches) by yours truly!

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.

a painful disorientation

I must admit that a combination of feeling totally drained and exhausted, with a subsequent nocturnal pattern of discomforted sleeplessness, didn't bode well for this new day. Bearing this introit to the day in mind, I shouldn't have been unduly surprised by the morning's turn of events. After a familiar lazy start to the day, emerging at around 10.30am from the duvet lair, I decided to venture down to Open Church for coffee and conversation. Although it's only about a ten minute slow walk, I already felt quite tired on arrival, a dull bruised ache across the chest at collar bone level being sustained against an erratic cramping counterpoint from the abdomen, provided a somewhat disconcerting background to an overall sense of light-headed giddiness. Suddenly, apparently out of nowhere, there emerged floods of tears from yours truly, an involuntary response to an all pervasive fearful sense of disorientation.


A generalized sense of disorientation and  bodily discomfort,spasmodic griping cramps in the abdomen, and a head best described as a bruised hollow floating dysfunctional globe of giddyness - had already provided the keynote (for considerable portions) of the past several days. On top of that, a sharply bruised tenderness around the ribcage (dx costochondritis) has done little to encourage any real sense of well-being. In fact my whole colonoscopy debacle (recorded by my OH, as 'My beloved's bad experience', on her Bright Light blog) seems to have caused a general setback healthwise; of course the timing may be completely coincidental.


I have an appointment at my GP's surgery this afternoon for a general checkup.

***********

PS 17.12hrs I saw my GP this afternoon who gave me a general maintainance check via stethoscope & sphygmomanometer and he feels that it was a panic attack alongside all my old familiar aches and pains. He has also given me a booklet 'Panic : a self help guide' and a mental health questionnaire as well as arranging a follow up appointment in 10 or 11 days time.

just like a woman

Sometimes we depend too much on the information presented by an official department, in this case the Endoscopy Unit at the District Hospital, that we are in danger of failing to notice any contradictions present in the leaflets provided. As mentioned in my previous post, my colonoscopy has been brought forward to tomorrow so today is a day of vital preparations.

At the head of the page titled 'The Day Before Your Examination' that "at any time today you may drink any of the following: Tea / coffee (with milk or sweetener if desired) ..." yet at the foot of the same page (following instructions with regard to Breakfast, Lunch and Supper, as well as preparing and taking the sachets of bowel scouring preparation) we are told that "Tea / Coffee after Lunch should be black" and that's with lunch allocated for midday!

This footnote also informs one that "no further solid food or milk and other dairy products are allowed after  Supper until you Hospital Procedure". The allocated time for supper is 7.00 - 9.00pm when it clearly states that "No solid food is allowed." Surely the note should therefore read that NO FURTHER SOLID FOOD ..... ALLOWED AFTER LUNCH UNTIL YOUR HOSPITAL PROCEDURE"

 For lunch I had a portion of chicken breast (steamed) and my next solid food will not be permitted until after my procedure due to commence sometime after 3.15pm tomorrow. I’m already craving bread, crisps and even fruit but I’ll just have to grin and bear it. I’ve never felt such desperate need for a cigarette since I gave them up last June.

A warning that I, as a male of the species, would have liked to have been given concerns the very drastic nature of the bowel preparation. After two violently liquid diarrheal episodes I felt, a short while later, an urge to empty my bladder (having been encouraged to consume lots of liquids) and considered it safe to do so from a traditional standing posture. Unfortunately the attempt to urinate produced a simultaneous anal leakage. Since then it has been essential to adopt a woman's seated posture whenever I need to take to take a pee.  That probable side effect would have been worth knowing about!

Urgent Preparations

And all of a sudden it's panic stations; after last month's sigmoidoscopy an appointment was made for me to have a full colonoscopy at the end of this month. Having just had a late lunch today the telephone rang; the endoscopy department had a cancellation and they wondered if I could go in on Friday afternoon. This means of course that I've unavoidably breached the dietary preparations for "Two Days before your Examination" and tomorrow will be the day for taking two sachets of the purgative solution (Sodium Picosulfate) and my last minimal low fibre food intake will be at mid-day, midway between the two doses, although i am permitted a clear soup or meat extract drink and perhaps a little clear jelly sometime between 7.00 and 9.00 pm.

It's not a case of me having the largest of appetites but, as the appointment on Friday is not until 3.15pm, I feel pretty certain that I'm going to be somewhat pre-occupied with hunger pangs. On reading the preparatory notes I find that it's necessary to "Talk to your doctor before taking the bowel preparation if you:"... - the relevant note here being "Have reflux oesophagitis (a condition where acid from the stomach enters the oesophagus". As things stand, I've been treated for this condition for a number of years so, a hasty phone call to my GP's surgery was in order. Within ten minutes a doctor called me back and assures me that, as the 2x30mg lansoprazole along with occasional doses of gaviscon kept it reasonably under control, it would be OK if I just continue with that medication. [My primary concern had been that the notes went on to state that "some conditions may require you to be an inpatient for administration of bowel preparation" and, somewhat ironically, I've always felt that when one's feeling grotty hospital is the last place you want to be!]

passively full days

Though still, of necessity, doing little that requires any degree of exertion it's amazing how full my days seem to be! My noblest intention of posting more regularly (to the blog) remains just that, an intention; perhaps I could blame the paucity of posts on not wanting to bore my readers but, that doesn't seem to have bothered me in the past. Perhaps the fact that my days seem to be 'full' is quite simply a reflection of my somewhat restricted stamina levels; had I a greater reserve of stamina then I would be able to fit much more into my days.

Never having been much of a sun worshipper, it's really quite amazing how much time I've been spending sat out in the garden during the current prolonged spell of dry sunshiny days. Parasols are regularly erected at the table in front of the bench, immediately behind our living room, and beside the love seat near the pond, to offer a degree of protection to this fair-skinned beauty. Even whilst sat beneath the parasol's shade I wear a hat, taking full heed of the advice I received when the basal cell carcinoma was diagnosed and excised  from my back last year. The shade, proferrred by the parasols, seems to camoflauge my presence for the garden's avian* visitors which have quite frequently settled themselves down in much closer proximity to this human interloper.

An irritable, intensely frustrating, spastic colon has ensured that I rarely ventured far from house and garden in recent days, my most distant jaunt being to 'Open Church' at St Marks - approximately 10 minutes walk - for coffee and a chat. Even that little stroll could prove a little more difficult now that my back trouble (related to the herniated disc?) has flared up again; hopefully a combination of tramadol, ibuprofen gel, and a firm back support will keep that little problem in check. Fortunately, I seem to have regained an ability to concentrate on doing a bit of reading, in the past few days having read Tony Benn's 'Letters to my Grandchildren' and the first couple of hundred pages of Manning Marable's 'Malcolm X a Life of Reinvention'.

Recent bank holidays have meant that I have been blessed with a few more days basking in the company of ma belle Helen, life could hardly be better.

* more on the birds in the garden on my beloved's blog


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

earlier today I posted a couple of snapshots 'must be a tea garden!'  to Mal's Picturebox

new web album - bloomin' spring 2011

I have just added a new web album of 60 photographs, Bloomin' Spring 2011, to our New Luv4Sinners website!

an Easter Declaration

pond life

just had to video this - loved the way the tadpoles were swimming around
the basking common frog in our garden pond this morning

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.

... and RELAX (again)

Another afternoon in the garden, primarily with sun hat donned, relaxing in the shade of a parasol. Once again ma belle donned her gardening gear, on her return from morning worship, and has been tackling further border areas in an attempt to slow down the ground elder's rate of advance. Mid- afternoon I decided to load a wheelbarrow with the rich humus from the bottom of our compost bin and duly scattered it across the border that was yesterdays scene of Helen's battle against the pernicious weed (ground elder).


My body informed me that it was time to quit the exertion routine by the time I'd dealt with that one barrowload; I don't really intend to risk any dispiritingly excruciating post-exertional malaise. Relaxation is also the theme for the evening; having watched 'Songs Of Praise' with my beloved she then headed off to Hampsthwaite where she's taking the service this evening and, on her return, we'll probably switch on ITV for a bit of escapism compliments of "Lewis".


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

and a little relief

As the week went on, my body cried out for an increasing amount of attention. Alongside the all too familiar muscular aches and spasms in upper and lower limbs, the spasms in the calves now accompanied by random painful twinges in the thigh muscles, my GORD (reflux) symptoms seemed to flare up once again, in spite of having resumed the double dose of ppi's.

A totally aching shattered tiredness has frequently caught me unawares mid-evening, my minimum twelve hours bed-rest per day (apparently) not serving to alleviate this excruciating fatigue in any way. At times, whilst (relatively) comfortably seated, a floating giddy headedness accompanied by peristaltic waves of nausea overwhelms me. It feels at times as if the whole ribcage is convulsively contracting and an examination by my GP, yesterday afternoon, confirmed much volatility in the abdominal region for which he has prescribed some anti-spasmodics as well as arranging for me to have a colonoscopy. I've got to admit that the combination of GORD and a spastic colon is not one that I would recommend.

Today has been a day of glorious sunshine and, I've spent several enjoyable hours sat beside the garden pond whilst ma belle pursued her task of clearing away some of the ground elder from one of the garden borders. Prior to that leisurely open air pursuit, we had both enjoyed watching "The Taming of the Shrew", shown as a tribute to Elizabeth Taylor - the chemistry between her and Burton is so wonderful to witness. And now, as I scribble these hasty words, we're watching "Elizabeth Taylor - A Tribute" on BBC2.

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. 

normal service will be resu ... [repost from 'Mal's Murmurings']

this is … this … this is what … what it … what it feels … feels like … when the … the … the glands … lymph … something or … owww … in the armpit and … and the painful discomfort … … …. means that one … … has … has t … has to lock … aaargh … their arms … tightly … oh stuff this …

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.

Sometimes

Sometimes life just feels good, no matter how ropey ones underlying condition may be. It's the simple things that count for so much; the delights of taking a shower comfortably seated, remembering how much one struggled before that simple installation of a seat was made. To relish a rare good nights sleep, waking in the morning feeling almost refreshed and, the odd muscular spasm responding to an appropriate medication.


Having registered with a different doctors practice on Monday, one fortunately within my restricted walking range,I had an initial consultation yesterday where I was able to initiate an essential modification to my precribed medications. To be honest though, even the most efficacious medications seem to carry with them some undesirable side effects and one has to carefully consider their relative demerits.


The GP I saw also appeared to be quite understanding about M.E. which was a very pleasant surprise, when one has become quite used to a rather dismissive attitude, seeing the importance of pacing and resting. She even seemed supportive when I suggested the importance of campaigning on ME related issues and how important an online presence had been for me. An acceptance (albeit reluctantly) of the quite dramatic limitations that chronic illness imposed on any socializing activity, was for me a significant turning point, I was no longer held hostage by a recklessly seething self-pitying anger. The more I resented the condition, the more difficult it had become to develop any kind of strategy to cope with it; acceptance enabled me to regain myself.


Sometimes, life just feels good - just venture into the garden, take a few snaps - Spring is so much in evidence ...

                                               Click on image to enlarge

Disjointed Time

Concentration was in short supply - a natural adjunct to the state of shatteredness and, last night I was in bed by 9.30pm (BST) being barely able to stay awake; attempts to stifle yawns proved futile. The only option was to yield to the bed rest impulse. Once abed the plot line changed; acute discomfort in wrists and hands, aches and cold shivers and shudders in torso and limbs generally, militated against the necessary restfulness. I applied a wrist splint, took a couple of tramadol 50mg, and removed my pyjama jacket, in an attempt to ease a frustratingly generalized sense of dis-ease.

Come 12.00 midnight, I began to feel more comfortable than I've felt for several weeks and, yesterday's sneezes and watery eye sensations seemed to have vanished. Quite strangely, once I began to feel comfortable I also began to feel wide-awake and, unfortunately, this state of alertness was my companion throughout the night. Wouldn't it have been wonderful to have felt so comfortably alert during the preceding day, or indeed any day, when full advantage could be taken of this rare experience? For at least the first couple of hours I found myself basking in this new sensation, with only a niggling concern that this nocturnal liveliness of mind would no doubt carry with it a penalty of shatteredness later in the new day. At 4.25am, I succumbed to the temptation of switching on the bedside radio and tuning in to Radio 3. I really enjoyed the rich miscellany of classical music, although on this occasion I had been hoping that it would lull me off to the land of Nod but, instead , I listened in a state of entranced alertness. I only managed to snatch some real, albeit intermittent, shuteye between 8.00 and 10.00am.

A brief walk up the road shortly before noon, to register with a conveniently local GP practice, post off a completed census form, and collect a wholemeal loaf from the bakery, was about all the exercise I could manage. Much of the afternoon has been spent reclining in the living room, Radio 4 presenting an interesting audio wallpaper whose weave I find myself drifting in and out of.

Just Another Day

Yesterday, I released myself from the duvet lair sometime after 10.30am then did very little apart from despatching a few e-mails as part of the Armchair Army in solidarity with the "TUC March for the Alternative". I also felt quite privileged that my name was borne on a Broken Of Britain T-shirt worn by one of the marchers.

I did manage a little walk with my beloved, nowhere near as far as I'd hoped even though a little further than the previous afternoons totally abortive attempt (on that occasion muscular spasms in thighs, as well as calves, conspired with a spontaneous dissipation of my limited stamina reserve, to thwart the endeavour). Even with just that minimal activity I felt totally shattered and reluctantly retired to bed at 9.00pm (GMT) with not even an egg-spoon of stamina in reserve.

Ma belle and I did attempt to watch a bit of light-relief TV, au lit, but sheer exhaustion won out over entertainment. I did, however, remember to put the clocks forward, in readiness for the early morning transition from GMT to BST. I seemed to manage a little more sleep than I do on many nights but, I still felt shattered when I emerged from the duvet realm at 10.30am (BST).

I've never fully recovered all-day today, even having to divide my modest dinner portion into two - split between lunchtime and teatime - to give my ailing digestion an easier task. Apart from the abdominal discomfort, familiar cramping spasms in calf muscles have formed an unholy alliance with excruciating twinges in my thighs whenever any movement necessitated even a moderate degree of stretching.

Visits to the loo have been irritatingly frequent, the dreaded gut-rot has plagued me all day.  A differently aching muzzy head and spasmodic bouts of sneezing have added to the day's rich tapestry; for the first time in ages I suspect that I could be coming down with a cold! Considering that for several months before, or when, I first succumbed to ME I constantly struggled with flu-like symptoms – full-blown colds have been markedly absent during the past seven years

Sorry I'm Not Marching

Just to assure you that there are many more of us who would like to be out on the streets, demonstrating against the governments ideologically motivated austerity programme, if only our health & stamina would allow it.

Why are you so committed to mollycoddling the economy destroying bankers whist punishing the low-paid and incapacitated?



message sent to PM, Deputy PM, and Chancellor on 26 March 2011

spoilt by lack of choice

Just how irritably tetchy, like an overwound spring, I'd become wasn't immediately apparent but, (these days) the most minor event goes wrong and, wham, bam ... I'm in there without so much as a by your leave. I feel sorry for the recipient of the agressive verbal outpourings that ensue, it just seems so contrary to my (what was always seen to be) laid-back temperament. To be honest I never suffered fools (especially the supposedly intelligent ones) gladly but, would always deal with the situation in a calmly measured way, at least that's what I attempted. Nowadays it's shoot first ... ask questions later.

On the one hand I know that suppressing anger / outrage can have a negative effect on one's psychsomatic well being but, at the same time, rapidly vented anger leads one into a lingering slow-motion period of regret, the outrage having frequently been disproportionate to its triggering event. Unfortunately I never have sufficient stamina to release the pent up frustration by more directly physical means - walloping a punch-bag, bopping the night away, even going out for a lung stretching high speed walk is out of the question - so I'm left with a fiery verbal temper.

Since succumbing, eight years ago, to this excruciatingly painful, socially isolating, chronic condition, the irritability quotient seems to have multiplied in an almost logarithmic progression. Intense frustration arises on occasions when I've decided to go with ma belle to do some shopping, only to find that minutes after belting up in the car I suddenly feel too discomforted and unwell to pursue this course of action. At other times I arrive at the shop and have to find a place to sit down, in splendid isolation, whilst ma belle does the shopping. Bracing myself for such outings as visits to shops, GP surgeries, or indeed any priorly arranged appointment, swiftly depletes my already limited stamina reserves. Should a last minute change occur to any of these plans, that's when the spring snaps ...

What surprises me most is the high degree of contentment I have in simple pleasures such as sitting out in the arbour seat, observing the garden's flora and fauna, or basking in the presence of my beloved in the evening. I am essentially a happy, easily contented person; I just wish my body would allow me to socialize more, rather than constantly having to fall back on being self-contained. An asocial mode of being is not my lifestyle choice. 

Close Encounters of the Flutter-by Kind - now you see me ...

situational frustration

Frustration intensifies, normal ‘healthy wellness’ is becoming too much like a vague distant memory; I struggle to recall what it was like to be able to freely socialize. The once taken for granted now seems to define the height of luxury; to just pop around to visit a friend or go out for a drink, to go to a cinema, a theatre, a concert or an exhibition without having to weigh up whether my resources of physical and / or emotional stamina are up to the task, all that seems such a long time ago.

It’s even many years now since I felt able to attend a church service; just the fact of having more than a couple of other people in close proximity, without feeling able to freely escape (without causing a disturbance / disruption) is sufficient to bring on the cold sweats and palpitations. It’s like a strange variety of claustrophobia, the peopled environs seeming to act as a creeping tourniquet being applied to my chest and abdomen, the presence of these others, coupled with the functionally imposed duration, seems to overload my senses; at times, even just having a couple of visitors at home can cause a similar discomforting sensory overload but, at least in these circumstances I am able to retreat elsewhere in the house.

Of course these situational responses can’t really be separated from the sundry aches, pains, and muscular spasms which are the situation's all too frequent accomplices.

The Art of Revival

Last evening, after a day of acute discomfort, I set myself a task by way of a distraction from my ailments. An old laptop of mine had become frustratingly sluggish, to a point where it seemed to have discovered the secret of backwards time travel; a simple update of MSE antivirus took on the proportions of installing a new service pack (and that in an imagined scenario when one had failed to install any intermediate patches). So, you may well be thinking, you utilized frustration as a distraction?



The mission this time was to do a clean install of XP Home SP2 followed by SP3, a few drivers needing to be installed in the process. I even managed to install a full Office Pro system, ready for handing the machine over to one of Helen’s students at the Acorn Centre. Having done all this work, it was amazing to see how fast it responded to any command – almost like new; the fact that many of the letters had worn off the keyboard soon allayed any confusion on this point.


The distraction did little to alleviate my painful discomfort but, I feel certain that the time passed much more quickly (and constructively) than it would otherwise have done. I’ve even got another discarded PC in my sights, to attempt another resuscitation operation.