On Parole

Over the course of the past few weeks, great steps forward have been achieved! What I would have considered minute shuffles, in pre-illness times, now seem like immense strides in terms of progress. Increased activity levels have been only moderately counterbalanced by achingly exhausted collapses; the all too familiar roller coaster experience has been transformed into little more than a kiddies replica of the real thing.

Perhaps the greatest advance was a walk into town, the first time I’ve been able to manage that in almost six years and, more importantly, being able to cope with all the audio-visual experiences a town centre throws at one. This comes in the wake of throwing off a chemical lifebelt of anti-depressants, which were supposedly easing my anxiety / panic attacks!

An early morning dose of tramadol hydrochloride (initially prescribed on a more intensive basis to cope with the pain caused by a herniated disc) serves to alleviate the muscular stiffness and spasms which have long been my faithful companions. As a result I have been able to manage more short walks, on top of carrying out various tasks in the garden and my regular culinary activities.

Somehow, the advent of my full pensionable status seems to have coincided with an upturn in my general sense of wellbeing. Perhaps part of it is the newly found freedom from guilt on my better days; the thought that I should attempt a return to gainful employment is no longer part of my agenda. The expectation that I could have done so was totally unrealistic on account of the unpredictability of this condition. Even the re-invigorated Malcolm is still subject to the whims of an achingly exhausted body and, it would be foolish to ignore the more insistent corporeal demands for rest (unless a sense of masochism longed for a painful relapse).

Meantime, I simply give thanks for being paroled from the ME – CFS prison.

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.

Mal Steps Out

Today's posting, STEPPING OUT, can be found on 'Mal's Murmurings'

Bring Me Sunshine

The sun shines, and all seems much better with the world; a bright day has such an amazing effect on one’s sense of well (or even not-so-well) being, it’s only a pity that it has little effect on the multitude of socio-political ills that afflict the majority of humankind.

Just looking out onto the garden gains new vibrancy; each year I’m amazed and encouraged as the first shoots thrust their way into daylight, preparing for spring. (see my poem First Rite on this theme)

Shuffle my way up to the garden pond, look in disgust at the floating debris, think about netting it off but, I’m all too aware that once I make that effort I’ll be too tempted to start on a more widespread cleaning. The piscine inhabitants wouldn’t be too happy about that, this early in the year, so it’s just as well my energy reserves are not exactly fighting for release.

For the moment, I make do with topping up the bird-feeders, pace about a little to give my leg muscles a little stretch, before returning to the house for a nice cuppa (or three) of Earl Grey.

It’s remarkable how much easier it is, on a bright day, to count ones blessings. At a time when I’d lost contact with many of my friends, as my ability to socialize declined, I was able to make contact with others in cyber space, and most importantly able to offer help and encouragement to some of these people.

As my love for my wife grows daily, and that’s starting from a remarkably high plateau, I am so fortunate to have that love reciprocated. Being able to pop down to Open Church, for a cup of Fairtrade coffee and a natter, still seems like a bit of a luxury and, I can only be grateful that I can comfortably manage the walk down there and not be overwhelmed by any background noise. It’s simple things like that, which I would have taken for granted a few years ago, that I have now learnt to appreciate; even the fact that I have a roof over my head, food in the larder and, water on tap provides cause for rejoicing.

Even on a dull, wet day, I am aware of the many blessings (though sometimes it takes a bit of coaxing to bring them to the fore) but, as the sun continues to shine my gratitude is somehow amplified.

BEST FRIENDS

A generalized sluggishness pervades my being, marginally more so than is my norm. Yesterday, the day being somewhat brighter than of late, decided to take a modestly longer walk than I usually manage, in the (misguided) belief that it may alleviate the droningly throbbing pain in the left thigh. I almost overdid the exercise and, found myself struggling as we tackled the homeward bound section. At least it proffered no more than the usual degree of tiredness and discomfort by way of reward; I suppose that’s progress of some kind.

Although you may find it difficult to believe, I don’t really like moaning on about my assorted aches and pains, it’s quite simply that they are my most constant companions; I feel the same obligation to report upon them as I would were I to boast about or describe the achievements of best friends. [Yes, I admit it; best friends can at times be a pain too!]

Trouble with the aches and pains is, they never seem to know when one needs time to be on their own. There are times when I would appreciate the absence of their company!

Return of the hammer wielding fiends

Once more the wielders of the lead cored, matted felt, lump hammers are on the rampage. Yesterdays aches, and nagging bruised feeling in the armpits, are now accompanied by a bruised sensation in limbs and torso; even my head has not escaped the fiends’ nocturnal havoc! To be honest, my head feels as if it has been swathed in blankets with the occasional tourniquet applied around temples, eyes, ears and jaw-line.

A sharp spasmodic cramping pain in the right lower limb plays counterpoint to the dull aching shoulders and upper limbs. For a few days the discomforting throbbing armpit has been doing its darnedest to make me forget the progress I’ve been making during 2007. For the first time in many months, the helping presence of my beloved was essential as I showered this morning and, a little rest period following this dowsing imposed itself upon me.

I trust that this minor setback will be swiftly overcome; perhaps it’s simply a belated reaction to the drained resources of physical and emotional stamina consequent upon my recent holiday excursion. Falling falteringly asleep mid-afternoon, in recent days, was quite probably the hammer wielders warning signal.

At least these dully throbbing visitations are not recurring with the same frequency nor, hopefully, of such sustained duration, as was my lot in earlier times.

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

The variegated dance of life

Oh, the bliss … a wonderful return to the almost normal disrupted sleep pattern. The cocktail, of anti-inflammatories and analgesics, has finally started to kick in and, my traditional mode of randomly disrupted bouts of sleep feels just great! What a contrast to the sleep disrupted pattern of acutely pained wakefulness.

The staircase now proves less of an obstacle, more of a routine; the exercise has been honed to a fine art of stick and handrail assisted good leg lead on the ascent, pained leg lead for the descent. My hobbling around, within the confines of the house, is an altogether less excruciating experience; I occasionally manage to maintain an upright posture, as opposed to a crooked one, during these ambulations.

The dance of life maintains an endless fascination. I rejoice in this day the Lord has made!

A Celebration

Today's blog posting, A Celebration, can be found on 'Hirsute Antiquity'.

Nothing Ventured ...

Having been thwarted on my excursion to ‘Open Church’ yesterday, owing to a marked lack of stamina, this morning I ventured there through the pouring rain. My first change of venue this week, energy reserves having been very low since Monday’s “scrape hard, hammer light” defrosting session! It’s strange really how little exertion is required to knock my progress off track.

Yesterday, I managed to make it as far as the local Post Office / Newsagent before my body cried enough; there’s no doubt that I could have made it down to St Marks but, I feared that I wouldn’t have had sufficient resilience to exercise my usual scintillating conversational skills. Today, despite getting well and truly rain bedraggled en route, I still managed to sustain an hour of conversation with sundry semi-kindred spirits.

Our thoughts have been with Beth, moving house on such a rain tormented day but, not sufficiently so to offer an (un)helping hand. The spirit may be half-willing but the flesh is well and truly weak!

A long night's exudation into day

Last night was one of those occasions when I quite simply wished that I could peel off my skin, dermis and epidermis, in order to allow my body to breathe and free itself from all the perspiration oozing from my pores. Night sweats are nothing unusual to me, at least for the past several years they haven’t been, but overnight they took on epic proportions. For much of the preceding day, I’d been feeling rather hot and achy; the tenderness of glands in my neck and under the chin being a particular irritant but, this hadn’t prepared me for the torrential ooze of moisture from head, chest, legs and arms, in the wee small hours.

Working on the supposition that all this exudation should allow the body to cool down, the routine was, on this occasion, apparently performed in vain. When I removed all the bedclothes from my side of the bed, the initial sense of refreshment was short-lived and, Malcolm remained in a state of rampant overheating!

Still, casting issues of perspiration aside; the degree of fatigue, giddiness, and discomfort, that I’ve experienced, consequent upon drawing on more of my reserves of physical and emotional stamina during the past week, is nowhere near as severe as might have been anticipated.

Progress is the Goal : Pacing is All!

Slowly but Surely

For the first time in far too many a day, I decided to do a bit of reading before departing from the duvet realm. It’s the sort of book which I’d have read in a couple of days at one time, simultaneously scanning the pertinent contents / ideas to memory but, my concentration at the moment beats a retreat after about twenty minutes. On reflection, the fact that the writing held my attention and, I sustained concentration, for even that period of time, is a sign of progress!

After that ‘sustained’ bout of reading, I drifted back to dreamland and finally, rescued myself from the duvet lair a couple of hours later. Somehow, I found sufficient stamina in my energy bank to do a miniscule amount of work in the garden before rinsing out the filters from the pond’s filtration unit. It really feels good, being able to manage a few little tasks and, it provided an opportunity to restore a smidgen of glory to a rather tarnished halo.

Come early evening, my beloved having returned from work and a meal with Beth, we ventured out for one of our proverbial brief brisk walks. As we set off, we met Cathy’s friend Kate, who is currently recuperating from brain surgery and had a lovely chat. She’s just such a lovely radiant young lady, who seems to have lost little of her resilience despite the difficulties she has undergone over the past couple of years.

Unlike a few months ago, when any time spent stood in conversation meant that I lacked the stamina to continue the walk, we were able to finish our brisk stroll and, arrived home just in time to watch ‘The Inspector Lynley Mysteries’ (BBC1). Both the exercise and the TV gawping were gratefully received by yours truly!

Although progress may at times seem slow, I just have so much to be grateful for.