When Purgatory Beckons

I’ve always heard about the road to hell being paved with good intentions and, have more recently discovered that another’s good intention can bring severe dis-ease to the one being benefited by their deed. The past few weeks have not been easy for me to cope with, the aftermath of my minor stroke and that of my step-daughter’s accident, the latter needing my beloved’s assistance to dress and shower herself.

Over many years I learned to live both in communal houses and alone, much of the time at peace with myself. In more recent years I have lived in relative peace and harmony solely alongside my beloved OH. As I’ve mentioned before, since the onset of my chronic illness I have become increasingly tetchy, even over apparently trivial matters.

This morning my semi-invalided step-daughter suggested that the dust in our (that of mine and my OH) bedroom  was rather un-healthy and, decided with her one (currently) usable arm to take the vacuum cleaner upstairs to do the cleaning. You can only imagine, or maybe not, my dismay at being told, by a young lady who has four cats romping about in and out of all rooms, that our bedroom was unhealthy! I had already been made to feel guilty at my relative inactivity when a person with one arm immobilised, and purportedly in intense pain, could manage domestic duties of a kind which my physical and emotional stamina levels require that I ration.

The final hump-breaking straw was her decision to mop the floor using a pot pourri scented thick disinfectant, as a result of which I later had to struggle to regain my balance as I took a slipper shod slide across part of the bedroom floor! Fortunately that struggle ended successfully but, it was yet a further warning that a good deed, if ill considered, is certainly a step into purgatory.

from the frontline

Sometimes it’s difficult, if not impossible, to describe the exhausting ache of self-questioning, veering towards a sense of guilt for being ill and hence, a burden or embarrassment to those who you really care about. I must be honest that even this preludium to a post doesn’t really express the underlying frustration that prompts it; at root, the knowledge that even the best of days carries a stamina rating of perhaps 20 - 30% of my pre-illness norm.

 

What I was really wanting to say is that the relative paucity of postings, arising from a desire to communicate (with and for whom I know not), bears little distinct correlation to my present levels of pain, discomfort, joy or plain normality. There are times when I wish to write but simply lack the necessary energy to place the written words in any meaningful order; at other times I am positively glowing with the enjoyment of spending time with my beloved, excited by the variety of avian visitors to our sundry garden feeding stations, or even the refreshing joy of a brief brisk venture out into the bracing air, can fill me with such glorious images which, were I to write them down, would sound like an overblown description of some utopian paradise.

 

An evening cocktail of tramadol and amitriptylene tends to curb the night pains, even though sleep is invariably of a restlessly intermittent unrefreshing variety. In the morning I continue to take a low dose of sertraline which seems to control the reactive depression which this disease can so frequently carry in it’s wake. Currently I am also taking mebeverine (3 x daily) and lansoprazole (2 x daily) in an attempt to ease my IBS and gastro-oesophageal reflux problems.

 

I am extremely fortunate to experience a fair number of days where pains and muscular spasms are quite simply a faint background hum, futilely struggling against my enjoyment of the day. Unfortunately, at night, as my body strives for rest the fitful pattern of sleep leaves one more vulnerable to these pernicious nauseating pains and spasms.

 

This afternoon, my far too familiar nausea-inducing nagging pains, emanating from the armpit and apparently gnawing through bone and muscle down through biceps to wrist, vengefully returned. A combination of painkillers and splint type wrist supports eventually alleviated this as I rested on the sofa. And so I come to post this, in the hope that at least some of my words convey their intended meaning.

 

Communique ends.

a complication of ailments

If only I could make sense of it or, better still, describe it in more tangible terms, that would perhaps make an accurate diagnosis more likely. It would even help if it was understood what kind of investigation / observation may be an aid to acquiring such a diagnosis.

Today is a classic case of the hard to define condition, a day when I've felt distinctly queasy and ill at ease, painfully so for a considerable portion of that time. A nagging chest pain, at times acutely sharp at others more like a dull deep bruise, sits atop occasional abdominal spasms. My head at times feels giddily hollow, a leadenly floating  balloon rather than a helium filled one. Sundry long standing gastroenterological ailments may well be behind many of my other symptoms but there, the frustration is an inability to find their cause.

As someone who suffers with the crippling muscle fatigue, muscle spasms, cognitive disturbance, and even tenderness of glands, associated with the neurological condition ME, it is all too easy to ascribe each new (or even apparently randomly recurrent) ailment to this underlying condition. Come to think of it, different individuals will experience distictive variants of the dis-ease; even a "sudden onset" condition finds its home in a body which already has its own history, pre-existing ailments and vulnerabilities. Perhaps, indeed probably, a body with a predominantly neurological illness can easily fall prey to other non-neurological complications.

A Pain In The ...

Last night, as I sat relaxing with my beloved, I was suddenly struck by a sharply acute pain in the lower part of my chest on the right hand side. The pain was still there an hour later, although by this stage somewhat intermittently and feeling rather like a sharp bruise. it was certainly a quite unfamiliar sensation and I couldn't put it down to indigestion but, I'd have been far more worried had it been on the left side of the chest.

Checked my pulse and, that was fine and, unusually for me when I'm in any marked degree of discomfort, or even without that prompt, there was no hint of pallor. So far, so good but my beloved was quite concerned (I had to admit to her that I was too) so, I contacted the out of hours doctor who recommended I should take some of my usual pain-killers (tramadol) and, if I felt any worse at all he would come out to visit me. That provided a welcome degree of re-assurance but, he did also suggest I made an appointment with my own G.P.

There followed a night of intermittently discomforted sleep; although I've learned to cope with my regular aches and pain, any change, to the old familiar dis-ease, plays havoc with my already erratic sleep pattern. I made an appointment with my G.P., although it was a locum I actually saw, for this afternoon. As the day went on, I found at times that the action of swallowing, and even moving in certain ways, renewed the pains intensity.

The first thing the doctor asked was whether I had any pain in my legs, I had to laugh as I explained that I'd not noticed any change to their regular discomfort. She felt around the calf muscle, checking for any hint of DVT and whether a clot had travelled to my lungs. She thoroughly examined me, checking blood pressure, listening to my heart and lungs and, quite expertly (albeit inadvertently) applying light pressure to the most tender area of the rib cage. When I tried to breathe deeply, as she listened to my lungs, the pain recurred with an excruciating sharpness. The diagnosis turned out to be something to do with the intercostal muscles and, I'd already begun to wonder whether my pondly exertions (at the weekend) had maybe put a strain on the muscle. I readily admit that lifting out the planters, from the pond's murky depths, wasn't one of the easiest gardening chores.

On the positive side, somewhat like the herniated disc last year, it makes a change to have a specific pain whose cause is definable, alongside those sundry aches and discomforts the flesh is so regularly heir to!

ME and my body

Yesterday morning, right on time, received a 'phone call from my GP. "It's good news and bad news", he said, "first, the blood tests showed no abnormalities". A mixed blessing that, at least nothing sinister has been spotted but, I'm no wiser as to the cause of my current downturn in the health and stamina stakes. "The chest X-ray was clear", once again a sense of relief as I start wondering what the bad news is. "It seems as if the symptoms you're experiencing are part of your ongoing condition. If things don't improve or, get any worse, don't hesitate to contact me but, there's nothing I can offer you at the moment".

The problem, and indeed danger, when suffering with a chronic neurological codition such as M.E., is that one tends to assume any extremely discomfortingly exhausting ailment they experience is simply part and parcel of the overall condition. One becomes so used to living with pain that their pain threshold is increased and, excruciating symptoms that would have previously been a cause for alarm are accepted as "normality". (This was very much the case around this time last year when, for far too long, I assumed that the extreme pain emanating from a herniated disc was yet another manifestation of my underlying condition).

Periods of remission are by no means unusual and, when these occur, the greatest danger then is to push oneself and, as a (sometimes belated) result find themselves once more painfully out of it. These are the times when I find concentration diminishing, tetchiness increasing and, that old (sadly familiar) enemy, sensory overload, recurring. The most frustrating thing of all is the impossibility of knowing if one is "ill", beyond the parameters of the resident disabling condition.

FALSE DAWN

Yesterday morning, bright sunshine greeted my emergence into day and, most unusually I was feeling wide awake long before 9.00AM; the general rule is that a state akin to wide awake is rarely [even half-heartedly] achieved by yours truly before 10.45AM! I even felt that my nights sleep had been of a refreshing variety, despite my having run two marathons in one day before getting lost in the centre of an unknown town, unable to find the loos. Dreams are certainly peculiar things!

How could I account for a good nights sleep, dream sequences notwithstanding ; the only aid I could think of was having partaken of an extra shot of macchiato at the Café Culture the preceding afternoon. Now there's a paradox!

Anyway, whatever the reason, this unusually early alertness continued throughout the morning, relatively pain and ache free [a most unusual ante meridian experience]. By late morning I was ready for a walk down to Waitrose with my beloved; the walk entails a 15 minute stretch along the Leeds Road before taking the tree-lined footpath across the stray, approx 7 minutes, and a further 5 minutes in the direction of the town centre. That's one helluva long exercise for me but, I managed it and, even enjoyed the walk back home.

All went well with the day until early evening, when an excruciating sense of despairing helplessness overwhelmed me, the sheer pointlessness of everything. The cause for that dramatic change; I'd started wondering how the hell I could get the tax people to sort out one of my pension providers who tax me on every penny even though, all other incomes having been taken into account, I have a further £3 ½ grand tax free allowance. I've never been averse to paying tax but, having completed endless forms, both prior and subsequent to attaining state pension age, no progress has been made on this front! [The pettiness of the issue is that the monthly payment is a mere £62 gross and I'm having £13 take away in tax each month – but when one feels shattered the whole issue takes on gargantuan proportions].

Even my preparation of the main course for Sunday lunch – always pre-prepared on Saturday evening – held no pleasure for me and, subsequent telly-gawping proved absolutely disastrous. The Vile Twins [that's not their stage name by the way] getting through the first stage of boot camp [we're talking X Factor here] made me quite apoplectic; if ever there was a case to be made for abortion, or even euthanasia, these twin contestants are it. Before their miraculous advance, I'd already declared that their advancement would sufficient to prove that there is no god, no evolution either for that matter!

A further cause of my general sense of irritating helplessness is the constant petty bitching experienced on all of the ME sites run by fellow ME sufferers; no wonder that no progress is being made. Doubtless the condition is a physical neurological one, of possibly viral origin, even though the vested interests of medical insurers and pharmacological industries are more than happy to support the psychologizers arguments.

Where my fellow sufferers find the stamina to continue with their virulent nit-picking squabbles is a mystery to me! I suspect that part of the problem is, by its extremely debilitating nature, this neurological ailment tends to breed a kind of re-active depression. Certainly, in my case, the onset of ME also found (or produced) a far more deep-rooted tetchiness than had been apparent as part my nature for the preceding decades.

Basically, I'm just a little pissed off and you, my dear readers, are the outflows recipients. This morning, my naggingly aching body, had to be forcibly removed from the duvet realm by a sheer effort of will. It seems like I'm almost back to normal.

the impossible is slightly difficult

Some things are just so difficult to explain that one just goes on with life, as best one can, unable to share their "different" experience of "normal" everyday activities. Some chronic conditions, even in their relatively moderate forms, can have the most devastating impact in terms of isolation; the combination of pain, sensory-overload - both auditory and visual (and the accompanying agitation and frustration) as well as an excruciating fatigue (caused by unrefreshing sleep patterns) are quite simply impossible to explain to anyone who has not been there and, together, they conspire to prevent much normal socializing!

Even when the worst symptoms are in some kind of remission, my coping mechanism has hardly returned to it's pre-illness state. There are times when, on a social outing, one feels they are going to explode in response to the immediate environmental activity - be it talking, music, lighting, or quite simply the presence of too many other bodies - then comes the difficult task of making one's "excuse" to depart early from the event.

Frequently I notice concerts, gigs, exhibitions etc that I'd like to attend but, I feel unable to pre-book ( even in my current reasonably well phase) as I'm never sure whether I will have the necessary physical and/or emotional stamina to cope come the day! Even when there's no requirement to pre-book, if an admission fee is involved it always seems an incredibly extravagant outlay bearing in mind that, in all likelihood, I will be ready to leave (unable to stay the course) whilst the event is still in progress. At the recent farewell party for the local vicar, it was amazing to be able to sustain concentration for that part of the entertainment I managed to cope with. My recent visit to Liverpool was a different experience altogether when I wasn't "up to" attending any of the exhibitions I hoped to see, or even dining out at a restaurant in close proximity to the inn where we were staying.

I am blessed in obtaining so much satisfaction from spending time in the garden, watching the avian activity, taking photos and videos etc., playing about on the PC, painting and writing as and when urge and stamina are in sync. I've become, in the process a contented homebird! On many occasions I'm able to manage a short walk but, even that activity has its own little idiosyncracies. This afternoon I took a little walk, at a somewhat slower pace than my recent norm; as I tried to speed up it seemed as if the lower limbs hydraulics were in serious need of an oil change; each movement required a conscious effort, as if I was required to lift my feet from some kind of cloying quicksand. And that was on, what had earlier seemed, a "better" day.

I have no desire to be a Moaning Minnie, it's just that I wanted to try and share something of that which I deemed, at the outset, to be impossible.

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.

plumbing the heights and scaling the depths

A dull, numb, lightly throbbing pressure behind the eyeballs; a leaden ache above the eyebrows; a general sense of hollowness within the skull and torso – the kind of discomfort that it is so difficult to express. Today, this has taken pole position against the competing sharper, sometimes excruciating, pains and discomfort emanating from the sciatic nerve.

It’s extremely difficult to formulate a table of aches, pains and discomfort; how does a constant low key gnawing, of a bruising kind, compare to an experience of an acute electric shock? Can numbness in any way be correlated with a more instantly sharply stinging sensation?

What does one express on a visit to the GP?

In my case it’s always the (perhaps transient) currently preoccupying dis-ease that is foremost in the more general catalogue of sensations; the ongoing symptoms of a chronic condition are rarely raised. These (permanent) discomforts are always least apparent when one has the physical and emotional stamina required to make, or permit my beloved to make, the appointment in the first place. I am fortunate with my GP’s, that they generally give me the time necessary to make the point but, even so, there are always the omnipresent discomforts that I don’t want to bother them with.

I suppose that the recent disabling excruciating pain, caused by a herniated disc, so overshadowed my regular discomforting companions that, had I been able to overlook the surface anguish, I could have imagined myself as being in the best of health.

The snow, outside of course, reflects the sunshine’s dazzling glare around the sitting room; my eyes ache from this glorious assault. The gas fire is turned up high but, the cold shudders, which I’m experiencing, strive to deny the fact.

Matters Arising

 

 

Tensions mount as the appointed hour for the great disclosure approaches. Although pretty cool about the whole thing, the nearer the disclosure the more, at an almost unconscious level, little anxieties creep in; “what ifs” abound. Perhaps some sinister shadowy condition is the source of my ailments, an organic disease that I’d rather be unaware of.  The whole episode becomes quite absurd, one has a scan to try to find out the cause of a certain condition only to (belatedly) realize that perhaps it would be better to remain in the dark about such causes.

 

My beloved was becoming more overtly concerned about what the scan may have disclosed; worried about organs of the body that may be diseased and, of which my severe discomfort may simply be an obscurely veiled indicator of a much more critical condition. Her obvious upset with this thought, found a counterpart in me as my (only vaguely considered) concerns were given body and substance. This was perhaps the transforming motive whereby my “Que Sera, Sera” was converted into an anxiety laden wondering what.

 

We visited my GP this morning; he soon put our minds at ease by saying that the report sounded much more sinister than it really was; amongst other things, the MRI had disclosed a 12mm hernia on one of the discs, it really is amazing what havoc such a tiny intrusion / protrusion, in the vicinity of the sciatic nerve, can wreak. He then presented me with the options of consulting a neurosurgeon or, “doing nothing” – quite simply continuing with a programme of pain management as and when necessary. For the time being, I’ve settled for the do nothing option as I’m all too well aware of the risks involved in any spinal surgery.

 

Should the extreme pain be sustained for increasing periods of time, becoming incapacitating on an even more regular basis than at present, that’s when the neurosurgical route will have to be followed.  

Sleeping - Waking - Waiting

 

It’s no longer sleep that’s the problem but rather waking. Great as it feels to be getting some real deep sleep, having previously experienced so many painfully restless nights, the necessity of sleep now seems to be overplaying its hand. Whilst I am really appreciative of the extra time (theoretically) I have to spend with my beloved, as she has been taking a few days leave, my extra sleep requirement has somewhat eaten into these precious moments.

 

Presently, my pain management routine seems to be kicking in; it’s almost a case of pain remaining at acceptable levels, permitting one the ability to think, and even concentrate, for a somewhat more sustained period. There is just so much to be grateful for!

 

This afternoon, I received a ‘phone call from my GP’s practice and, have duly made an appointment for Wednesday morning to discuss the results of my MRI scan. I’m not committed to anticipating either the worst or the best from these results; it’s simply a case of remaining patient until I get them. It was quite a surprise to hear so soon as, when I’d had the scan last Thursday, they informed me that it would be approximately two weeks before my doctor would have the result.  

Body Talk

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

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

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

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.