and so it goes ...

For the past few weeks my health, and emotions, have been on something of a roller-coaster ride; it’s difficult enough living with chronic-illness / chronic pain but, when more mundane bugs (doing the rounds) place an additional burden on one’s already low stamina reserves, an unwelcome veneer of despair enters the frame. Fortunately, these more mundane viral attacks tend to dissipate after a couple of weeks, but never before time.

Exhaustion still seems to hold control of the reigns, even when one is experiencing an apparently more alert and energized spell. As agonizing pain & exhaustion takes control so one’s temper frays and, against one’s better judgement, expletives tend to fill the air.

This evening the pain in upper limbs, joints and lymph nodes, has defied the efficacy of 100mg of tramadol. Malcolm is not a happy bunny but, still manages to put on a brave smiling face in an attempt to deceive himself. More happily, I am still fortunate enough to be capable of deriving tremendous enjoyment from a catholicity of music, DVDs, poetry and paintings.

Find out how Malcolm enjoys A PRIVILEGED LIFE! [ The link is to a posting on MAL's MURMURINGS]

Slow Running

 

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

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

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

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

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

Returning Home from Being There

 

An endless numbness, a dull sullen hanging sense of nausea and, barely the energy to read a single word, listen to a note of music; if only I had the stamina to put a thought together it would probably turn into a single-syllabled question. The querulous word would, I suspect, be more on the lines of “What” rather than “Why”.

I’ve long since given up on the existential / metaphysical why; more an exercise in futility rather than to proffer any result. “What” keeps the world alive, “why” seems more like an evasion.

Well, that’s yesterday dealt with; today I have returned to me. The preceding days, and nights, had been dominated by intensely excruciating pain, ranging from the numbing tourniquet, to the slightly blunted arrow; the bone and muscle crumbling ache in combat with those swiftly-fleeting nerve-tingling darts that seem to take one’s breath away; a kind of Topsy-Turvy Terpsichore:

Dance rules over all – it prevails against reason, common-sense and substantial portions of ritual belief. Trouble is that, we are never in control; I am currently in thrall to a kind of voodoo dance –nature’s response to a crushing debilitating pain scenario.

When all else fails, randomly fling limbs in whatsoever direction they feel like; if it causes further discomfort then that adds a whole new terpsichorean overlay, disclosing hitherto undreamt of fraught sequences of space displacement.

On Monday my pain-killing medication was changed, to a 3 day slow release opiate patch. Having applied the patch, late afternoon, my familiar discomforted restless night was in attendance, so nothing different then but the following morn was quite a different proposition. A total inability to concentrate, a generalized dull ache underlining the spasmodically erupting specific sharp pains; all was eventually blanketed under a heavily nausea spiced  airless cloud of unbeing, crushing a body wracked in turn between hot and cold shivering sweats.

Needless to say, all the remaining patches have been returned to the pharmacy and, my routine has been switched back to Tramadol, this time of a non-modified release type, to enable me to remain in control, modifying the dosage as necessary. Meanwhile, I’ve once again been referred to the hospital for further investigative work.

The 18 hours respite, including some ‘real’ bed rest, between removing the patch and taking a further pain-killer, has served to enhance my appreciation of the home environment. For the first-time this season, I was aware of the seasonally decorated dining table, and the various Christmas ornaments and tinsel sundrily scattered around our abode. This awareness of one’s habitation, the taste of food, the sound of music and always one’s loving companion is a gift to be truly celebrated. The return from a pain-riddled drug addled stupor makes me feel like the fabled Prodigal Son; although at heart I am always aware of the love that surrounds me, it’s good to receive a whole-hearted reminder, for one’s abode to find it’s rightful status as Home.

 

A Nudge and a Wink

Night-time trips between bed and bath rooms are fraught with a sense of adventure; my faith in the stability of bed end, stair rail and wall, has not been undermined so far. As long as the muscular and joint pains remain discomfortingly persistent, I remain on guard for the possibility of a random stumbling collapse; at least, in this one respect, the rest and sleep destroying acute discomfort seems to serve a useful purpose!

 

Somehow “collapsing” sounds far more dynamic than “creaking”, at least the results are far more spectacular when, knee, ankle, or hip joint, suddenly give way. The competition between “creaking” and “collapsing” into action becomes increasingly intense.  The sheer unpredictability of which joint takes priority ensures that my enforced sedentary lifestyle never becomes boring.

 

 

What I’m missing most of all is a decent night’s sleep; no matter how exhausted / positively shattered I may feel on retiring au lit, by the time I’ve struggled out of daytime attire, donned pyjamas and, performed the appropriate ablutions I’m far too fatigued to sleep.

 

I can usually guarantee that I’m going to be alerted into wakefulness at least once or twice in every hour by some chronic jarring discomfort emanating from anywhere between small of back and ankles. I still fail to understand the logistics that require the shifting (and adjustment) of the whole of my body, in order to achieve a minor adjustment in the alignment of the right lower limb; we’re talking microns here!

 

Somewhere between 3.00 and 4.00 am, I usually seem to achieve a state of full alertness although this effect has usually been squandered some time before my beloved stirs in anticipation of preparing herself for work.

 

All being well, I manage to remove myself from the duvets hypnotic allure by 11.00 am, only to fall asleep again mid-afternoon, my wife not uncommonly returning from work to find me in a dazed stupor.

RESTORED to ME

 

If one lives in a state of perpetual “not-wellness”, how is it possible to detect when they are ill? I refer to those kinds of chronic condition, which one learns to accept as normative, the regularly attendant symptoms of which would be construed as a real crisis condition in anyone blessed with more normal health.

 

In seeking equilibrium, I would never be so foolish as to anticipate more than 100% recovery from any aberrant additional infliction that comes my way, although the chance would be a fine thing; the real problem is being able to recognize when one’s health has been restored to its most recent pre-viral attack condition. Are the sore throat, earache, glandular tenderness, and muscular pains in the lower limbs and joints a further manifestation of the recent gastric knockout infection or, do they quite simply represent a return to my normative ME/CFS state?

 

Is there something wrong or, am I quite simply being restored to me?

   

Springs Spring

Four in a row of crisp, bright, sun-kissed days, makes for a little miracle in how I feel. Although I did not arouse myself, from fitful slumbers, until the morning was well under way, by 10.30am, a fair covering mantle of frost still lay on the lawn.

The garden is a hive of avian activity, blackbirds, house sparrows and starlings are all to be seen in abundance. Our resident robin puts in an appearance too, whilst a trio of blue tits visit the feeders. A dunnock joins the blackbirds at the ground feeder but, the blackbirds today seem torn between a need for food and flirtatious play. Spring is truly on its way.

At the top end of the garden, blackbirds wade and wallow in the dead leaf strewn waterlogged plastic sledge, more utilized in its desuetude than ever in its glory days of sledging purpose. The patio pond is covered in a thin ice crust but, barely a patch of ice touches the garden pond. Repeated frost-filled nights give me little hope for the frogspawn’s survival. Mind you, when a spawn is successful in the main pond, the goldfish never seem to tire of the fast food it supplies.

After a slow lumbering emergence into the day, I soon feel revitalized as I watch all this activity in the garden. My usual muscular niggles are hardly in evidence, it’s great to feel really alive. After lunch, I step out for a little stroll. Today, the walking stick serves more as a propulsion aid, rather than its customary supporting role, as I take a brisk walk around the block. The course I take is completed in twenty minutes, on a route which more usually takes me thirty.

Rather than wait for any anticipated backlash, I’ve told myself that I’ll free my mind of that possibility. Problem is, on a psychological level, it may be healthier to be prepared for any post-exercise malaise, rather than be caught by it unawares. Denial by positivity may not be the best approach. On second thoughts, I’ll just settle stoically for whatever befalls.

One swallow may not make a summer but, today, I do have a new spring in my step.

Gratitude

Yet another murky grey day imposes its presence and, I can only be grateful that I feel so much brighter than the day looks. I’m even starting to feel quite alert today, a pleasant surprise indeed when compared to many recent days. Managing to summon up the courage to take a shower seems, in itself, to be a great morale booster; just a few years ago I could accept showering as part of the normal daily routine but, never did it seem such a luxuriant experience as it does these days. Ever since we installed a seat in the shower unit, an antidote to the not infrequent episodes of disequilibrium I’d been experiencing, the experience has been so much more enjoyable.

Today, I even managed to towel myself dry and get dressed without requiring a period of rest between the two activities. Know what, it feels really good! The preceding ten or eleven hours of bed-rest, on this occasion, had proved unusually refreshing. I just have so much to be thankful for; the tenderness of the glands under the chin has subsided, that in the armpits has eased considerably and, the muscular pains in the lower limbs are desisting from their usual attention seeking behaviour. All-in-all, a really positive start to the day; I rejoice, and am glad, in this day the Lord has made.

Ein kleines nachtdenken

How does one explain an awareness of being unaware, a drifting within a static void, a painless ache; why, indeed, should one want to capture and explain such an undeserved and undesirable experience? Perhaps it’s the desire to simply interpret a non-experience in such a way that life makes sense. It’s not so much a dark night of the soul as a plenum void!

The moment is everything and yet feels like the very antithesis of anything, a sense of detachment from daily (or any) reality. Why do I use words? Because they’re there; maybe that’s the reason why!

Just An ORDINARY Day?

There’s no such thing as an ordinary day, albeit I too often consider them as regular events. Each new moment is just that, new; “you can’t step into the same river twice”, come to think of it, you can’t even step into the same river once! All is in a constant state of flux, we are swamped with new events, decisions, purposes etc., and so, what can possibly be ordinary about it?

On other occasions, we may protest that a day has been uneventful when, what we really mean is that there have been no dramatic incidents or, we’ve not met anybody new, or we drank the same type of coffee as we did yesterday. Sorry, but if you really need a gangland slaying on the doorstep for you to make the effort to get out of bed and go about your daily chores, give me the mundane.

For me, time passes all too swiftly, even when my sole function is to sit and breathe, and stare into space, for great chunks of it. And, of course, there are always decisions to make; do I get some breakfast before I get dressed, do I feel sufficiently energised to take a shower or, do I get dressed now and take a shower later (if I really need it)? All these decisions are made in my first state of semi-alertness after a restless, or even a more restful, nights sleep. And there’s questions to be asked, vital topics like “did the dream wake me up?” or “what exactly was that dream about?”, “is it really Tuesday already?”

Each day is full of excitement and demands, sometimes the demands are too great to cope with; dare I risk seeming lazy if I don’t do it; if I perform such and such a task will I suffer from some sort of post-exertional malaise?

Today has been an atypical ordinary day. I managed to consume the coffee, which my beloved had left on the bedside table before going off to work, whilst it was still reasonably hot. Removed myself, slowly, from the duvet realm, checked my e-mails before getting dressed and, half drowsily stumbled my way downstairs to grab a banana and a bowl of cereal. A reasonably brisk hobble to the local shops then ensued. Next I illuminated the small aquarium and, subsequently fed the inhabitants thereof. A similar practise was involved in dealing with the main aquarium.

When my beloved returned from work, I prepared a delicious lightly spiced and generously herbed trout and peppers dish served with wholegrain pasta, which we eagerly devoured in the joyously stimulating company of Ross Noble (Radio 4 – 6.30pm). In the early evening I managed to sort out a recurring problem my beloved has been having, with ‘Word’, on the computer at work. To solve it, I had to first recreate it from my beloved’s verbal description. Having recreated the problem, it took little time to resolve!

So my halo has been well and truly buffed up by the encouraging response from my other half. Amidst all that activity, I even remembered to sort out a bottle to pop in the fridge; the consumption of its vinous content is imminent.

This has been an ordinary day indeed. Long live ordinary days!

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

Malcolm's Amazingly Bold Adventure

At the end of a week of weariness, in which an at times acute back pain has insisted on making its presence felt, this afternoon yours truly undertook a major expedition. Chauffeured by ma belle, I boldly dipped a toe into the realm of major grocery shopping; no such task had been undertaken by Malcolm in the past two or three years.

Already, as the car nosed its way Waitrose-ward there were hints of panic encroaching upon my already discomforted demeanour but, I refused to turn back (bravely resisting this tempting offer from my chauffeuse).

Pushing the trolley, around the store, actually proffered me a modicum of support, although any necessary backing up of the self same trolley made me wince on several occasions.

It really is good to have experienced this aberrant return to ‘normality’ but, I have no urgent desire to replay the exercise!

Routine Services

Scrape hard, hammer light; an endless repetition to perform. Fill up another bowl of boiling water and place it on the middle shelf, enable rapid thaw. And then the scrape and tap once more; remove and empty the floor based tray, then shut the door once more. My prophecy, of the time the task would take, is swiftly falsified. The predicted hour multiplies.

I suppose its part of the price to pay for a legacy of neglect. Defrosting of the freezer should be performed bi-annually and not biennially as turns out to be the case. Anyway, this ritual (more honoured in the breach than its observance) was carried out by yours truly last evening. And this small task has taken its toll; thirteen hours after retiring to the duvet realm I re-emerged, unrefreshed, from the spasmodic grip of Morpheus. Vivid dreams had found me active in the awakened world; the transformation into reality was far more sluggish and, activity was the last thing my body desired.

Reluctantly, I ventured up to the garden pond for a ritual rinsing of the filters, after which I refrained from restarting the pump but, perhaps I should have simply reduced the flow rate. Anyway, it’s good to be settled back in the house now, in familiar restful mode, intermittently considering whether the pump switch off time is appropriate. Amazing, just how many decisions life requires us to make, even from a sedentary pose!

From rude alert to joined-up dots

The new day dawned brusquely, disturbing my beauty sleep, at the shockingly early hour of 9.00AM. Way past the real dawn, I suspect, but that's the hour when a strident telephone bell broke through the bonds of Morpheus. Yes, you've guessed it, the 'phone call wasn't even for me. My beloved had departed for work some time earlier I guess, the cup of coffee left by the side of the bed was stone cold - that was the clue and, wouldn't you know the call was for ma belle. To make matters worse, I had a message to scribble down and, both pen and paper were elsewhere in the house. With half-open eyes, I stumbled my way to the location of the writing utensils and, almost forgot why I needed them in the process!

An hour or so later, after a little rest, I finally struggled down the stairs, popped the stony beverage into the microwave, switched on the PC to check my e-mails, consumed the re-heated beverage, then made my way down to Open Church for a chat with the poor unsuspecting souls. Quite surprisingly, my lower limbs were in good fettle and, I really enjoyed the stroll both there and back on a beautifully crisp sunshiny morning.

The afternoon was treatment time, although in some ways it felt like pampering, as I underwent another acupuncture session. As I relaxed, it felt as if I was reclaiming my body - joining up the dots. By the time the treatment was over, I felt both relaxed and sufficiently refreshed to prepare a tuna pasta as soon as Helen returned from work. As usual, the meal was excellent; seems like I'm (happily) stuck with this creative chore!

The time is out of joint

The thermometer nods and bobs its way around this plant contained area; the curiosity of the pond’s piscine inhabitants is much in evidence. I can imagine the conversation, “I told you it was milder than last year, just look”.

“Wow”, says Junior, “12 centigrade. You mean it’s going to get cooler?”

The elders nod knowingly, “By gum, the bairns got a lot to learn yet! Remember that sheet of stiff water last winter?”

They remembered it all too well! They seem to be taking it in turns, to give a nudge to their new found object of contemplation.

Perhaps they remember that last year, by this time, the human delivered component of their diet had switched to wheatgerm. For the present, they continue to devour the remnants of their summer feed, before they switch to the pure vegetarian option.

So, once more it’s time for me to rinse the filters, as the pump still has a little more work to do this season. Today, the rinsing procedure seems a little more arduous a task; after yesterdays bright and alert start to the day, the flesh refused to conform with my spirits desire this morning, as I sluggishly emerged (in more traditional fashion) from the duvet realm.

As I sat beside the pond, a robin eyed me inquisitively whilst a thrush foraged through the nearby undergrowth. Even a couple of our summer visitor butterflies were in evidence today; somehow the times are out of joint but, I embrace it as a joy rather than (the Prince of Denmark’s) “wretched spite”.

It Is - therefore I type!

There have been times in my life when acquaintances have envied my laid-back approach to life; at other times, the pendulum has swung so far the other way that, I’ve been recognized as a sterling example of the stressed-out lifestyle. Alcohol and other substances have played their part in both extremes but, fortunately, *I haven’t become addicted to any of them. The major addiction in my life can be spelt out on the fingers of one hand: H – E – L – E – N!

Now, I don’t know where this little ramble is heading and, to be honest, I don’t really care. It seems like I’ve imposed upon myself a statutory requirement to write three blog posts on 30 August 2006#. I have no cause to be stressed-out, as it’s a self-inflicted statute but, nor can I be too laid-back, otherwise I wouldn’t come up with such stupid conditions.

Today, I contentedly drift in a state of semi-alertness, in the company of my beloved. I tap out words for the simple reason that the laptop exists.

[ * sad admission time – nicotine has its tentacles firmly embedded in mind and body! ]

# today’s other postings can be found here (on Hirsute Antiquity) and here (on Mal’s Murmurings)!

Bank Holiday Monday

Although my sole occupation is “pacing myself”, no formal employment, I still enjoy a Bank Holiday. When I was in formal employment, I not infrequently worked on those days and, alternatively, would remain at home rather than follow the lemmings to overcrowded beauty spots. The real treat, these days, is that it provides me with an extra day in the company of my beloved; this is the most precious aspect of my life, I always feel more complete when I’m sharing my time and affection with ma belle Helene.

We’ve managed to do a little sorting out in the house, re-arranging the bedroom which we intend to move into when we finally get round to ordering a new bed. I also managed to cut back some of the briars at the wildlife end of the garden whilst Helen gathered a few more brambles. Blackberries and apples are both available in abundance this year; it gives ma belle amoureuse a chance to practise her baking skills, preparing fruit sponges and crumbles.

The day seems to have passed all too swiftly.

I rejoice in this day the Lord has made.

Whither Normality?

This afternoon bore witness to my first “collapse” for a few days but, it leaves a big question. Am I wrung out by the ache and discomfort of the facial shingles or, is it simply a reflection of the norm?

I really am starting to question what it means to be ‘normal’ (perish the thought); for all the painful irritations associated with shingles I cannot honestly say that I’m feeling much different to what has become my ‘normality’, except perhaps the headache is slightly more persistent.

What has really been brought home to me is the fact that I have been ‘unwell’ for so long; the abnormal becomes the norm!