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.

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“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.

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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.