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.

Of LIMITATIONS and ENJOYMENT

OF LIMITATIONS and ENJOYMENT

Middle of the night and nature called; an attempted leap out of bed became the more familiar slowly lumbering self removal only, this time, with added difficulties. For the past two or three days the back pains had all but disappeared, only the more regular  discomfort remaining in its stead but, now it seems to have returned with a vengeance. It’s strange how one’s own body delights in playing tricks; just when you think it safe, to carry out an effort of moderate exertion, it sends out a disconcerting alarm signal. If only that signal was as transient as that of an alarm clock, disappearing as soon as one taps the necessary button, there would not be a problem but, unfortunately, these signals are not of that peremptory nature which curtails one’s pursuit of the (unwittingly) harmful course of action. These signals always seem to arrive after the harm has been done, swiftly transmuting the alarm call into a sustained aggravation.

So, you may well wonder, what transgression had I committed against my ailing torso? All I’d been doing was carrying out a partial filter and water change in our largest aquarium, changing two of the filter pads and performing a less than 20% water change. I could (almost) swear that I carefully controlled my posture during the entire operation, to minimize the risk of detrimental health effects, but my body makes a different declaration.

Prior to that minor operation I’d made a visit, with my beloved chauffeuse, to the local aquarists to replenish necessary supplies. The journey is approximately 2 ½ miles but, as is becoming an increasingly common experience, it felt like a major expedition; even travelling at speeds which never exceed the legal limit, on primarily suburban roads, can seem  like  we’re exceeding Mach 1 – my body  crying out in reaction to the velocity at which we’re hurtling through space. 

The whole sensory overload experience seems once again, and most regrettably, to be edging its way into taking control of my lived experience. I’m just hoping and praying that I won’t tumble once again into that convulsively shattering realm.

Strange as it may seem, apart from the sundry ailments which posit substantial limitations on my activities, I do continue to enjoy life. The simple pleasure of observing, and encouraging, the flora and fauna of our garden is a wonderful joy bringer, second only to the presence of my beloved. As I’m no longer able to cope with cinema or theatre-going, the increasingly wide range of films available on DVD proves a real blessing. My enjoyment of cooking, provided a fair range of herbs and spices are to hand, is another source of pleasure, as is the consumption of the end product! I must admit that much of the time I don’t really feel unwell, sundry muscular and glandular aches and spasms have quite simply become an accepted component of normality; it’s only when i attempt to stretch my activity output that I’m quite forcefully reminded of my limitations.

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

in case you missed yesterday's frivolous posting on 'Mal's Murmurings' I've repeated it here :

A Nation’s Addiction?

A radio news bulletin informs me that we’re becoming a nation of TV addicts, adding “according to a survey of viewers“!

They should try surveying non-viewers, only to discover that nobody ever watches TV in the UK!

 

Mal's M E jottings on New L4S

Apologies for the recent paucity of postings but, at least I've managed to find the stamina to add a new section, "Jottings from Mal's M.E. Log", to our 'New Luv4Sinners Website'