Watching My Back

I'm still waiting, albeit impatiently, to find a more regular pattern of sleep; needless to say, such a pattern has not yet emerged. After Monday night's peculiarly refreshing sleep, Tuesday night reverted to the more familiar restlessness; emerging before 10.00am to take a shower on Wednesday, both morning and afternoon necessitated intermittent little naps. By the evening I started to feel a little more awake; not a good sign. Come Thursday morning I was still in the throes of sleep when ma belle ventured off to work (around 7.30am), finally emerging into the new day a few minutes before noon.

And then the cycle repeats, Thursday's late emergence led on to a further night of intermittent sleep, although I did manage to remove myself from the duvet lair around 11.15am on Friday morning and, I then seemed to spend most of the day in an half alert state of being.

Retired to bed at about 10.20pm on Friday evening and then gradually stumbled into a waking state some time after 10.00am Saturday morning. Early in the afternoon I went out into the garden to take a few macro shots, of bees on globe thistles etc., but started feeling a sense of giddyness which persuaded me to go back in the house. Some twenty minutes later I started to have throbbing shooting pains, down my left arm, exceeding the all too familiar aching discomfort of the wrist which is my regular companion!

So, it's panic stations (for me and ma belle) as we head off to the District Hospital when the throbbing pain shows little sign of abating. The good sign is that I'm becoming rather flushed rather than going pale but, we're totally puzzled / worried about this temporarily excruciating addition to my catalogue of ailments. The first nurse who sees me, after about 40 minutes, makes a few notes and checks my temperature and blood pressure, the latter unusually high by my standards, before I return to the waiting area.

After a further 90minutes, or so, I'm called into an examination room where an ECG is administered; at least my heart seems to be OK and, by this time the pain had subsided considerably. A further 40 - 50 minutes later a Romanian doctor comes in and, having sounded my chest and back, and a little chat about Romanian wines, she carries out a few tests on the reactions of my arms and hands to touch. She duly notes an abnormal contraction response in my left bicep before examining the top part a of my spine. Once again as she touches a certain point relatively high on the spine, a quite painful shooting throb goes through my left arm. She notes a degree of misalignment of the spine and thinks that, together with the herniated disc in the lumbar region, could account for much of the pain and discomfort I've been experiencing. As she puts it, I'm sorry to tell you it's a back problem.

An evening in which I took anti-inflammatories alongside a couple of tramadol, and a preparatory mirtazapine, still managed to lead to a night of restless intermittent discomfort rather than a good nights sleep. Today has seen me swaddled in both shoulder and wrist supports as I tackled both dinner preparation and subsequent light gardening chores. Both wrists are currently screaming abuse at me, so once more I resort to ibuprofen, tramadol and, hoping against hope that the mirtazapine will have the necessary sedative effect.

a small blessing

Today, I managed to remove myself from the duvet lair before 11.00am and, to my great relief, experienced a most unfamiliar sensation, that of refreshment. I honestly can't remember the last time that I felt refreshed after a night's sleep. Fortunately the nigglingly painful spasms in my lower limbs, as well as a dull numb ache in my forearm and hand, were there to assure me that this wasn't just a dream!

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I've also posted this on Mal's Murmurings with the title "light refreshment"

and suddenly ... SLEEP

Had an appointment with a GP yesterday afternoon. The doctor was quite firmly of the opinion that I was experiencing a reactive depression, an understandable response / reaction to the debilitating neurologically rooted myalgia, and the accompanying lack of refreshing sleep, which has been my companion for such a prolonged period; she prescribed 15mg Mirtazapine to be taken at bed time.

If the first night's anything to go by they have a wonderful sedative effect and should, hopefully, help bring about a resolution of my sleep deprivation problems. Last night was one of those very rare experiences where I remember very little between putting my head down on the pillow (lateish Friday evening) and slowly, but somewhat groggily, emerging into mid to late morning (Saturday). 

I must admit that, at first, I felt somewhat as if I'd been sledgehammered; it took until mid-afternoon before I started to feel properly awake.

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.