normal service will be resu ... [repost from 'Mal's Murmurings']

this is … this … this is what … what it … what it feels … feels like … when the … the … the glands … lymph … something or … owww … in the armpit and … and the painful discomfort … … …. means that one … … has … has t … has to lock … aaargh … their arms … tightly … oh stuff this …

a little p e m goes an awfully long way - and I just wish it would stay there!

The mood of thankfulness and rejoicing soured a little, come early evening. On a note of bubbly confidence I suggested, much to ma belle's surprise, that I might join her on the grocery shopping expedition; that was a mistake. No sooner had we stepped inside the store than a rather generalized sense of queasiness overwhelmed me; first thought was that it may be a panic attack but, my efforts to take slow deep breaths made little difference, the discomfort was of a distinctively physical nature and that's when my awareness that there is not a public loo in Waitrose was re-awakened. So home it was, a rather weepy - almost self-pitying - Malcolm headed back to the car to be chauffered home. I suspect that post-exertional malaise, in response to the previous days activity had finally kicked in. Shattered exhaustion, a feeling that my ribs had undergone a kicking - a deeply bruised sensation apparently emanating from inside the rib cage, and haphazardly spasmodic contractions of the calf muscles served to refocus my attention away from the earlier contentment to an obsessive awareness of my own discomfort.

By 9.30pm, a sense of excruciating tiredness left me with no other option than to ascend the wooden stairs. Things then took a turn for the worse, as a nauseating discomfort in both upper and lower limbs militated against the possibility of finding any posture that proved conducive to sleep. First I applied wrist splints to counter the intensely painful aching void which seemed to have taken over the position normally occupied by radius and ulnar. The attempted relief led to a further numbingly tingling sensation that on previous occasions it had served to relieve. A couple of hours passed applying and releasing wrist supports, all to little or no avail. By this time an aching tenderness emanating from (the glands in) the armpits necessitated the removal of my pyjama jacket. Sometime post-midnight I was able to grasp a few hours of intermittent sleep but my emergence into the new day was somewhat marred by a gut-wrenchingly painful sustained bout of diaorrhea.

As the day went on I began to feel somewhat more comfortable and, this afternoon, managed a little trip down to Brookside Nurseries before delighting in a little light pottering around in the garden.

to bed perchance to sleep ...

This is the time for sleep. Try frustration instead of sleep; no thanks, I've just tried that and found it wanting! That was last night's pattern, finding myself totally mentally alert when I should have been resting. Perhaps it was the expectation of a sound nights sleep, following on from a day of plentiful fresh air and a more than modest (but not dangerously so) degree of exertion.

Yesterday was one of those spoiling days, once the bright sunshine had broken through; a cool breeze played wonderful counterpoint to the sun's warmth drawing me out from my domestic habitation. Having returned from a mid-morning visit to 'Open Church', where I consumed a cup or two of coffee as accompaniment to a bit of social chatter, I ventured up to the pond to feed the fish (goldfish and golden orfes) and felt suddenly inspired to apply a fresh dose of teak oil to sundry items of garden furniture.

After grabbing a bit of lunch, I returned to the garden and gave the lawn its first mow of the season and also took a few macro snapshots of some of the spring flowers. After that rather full days activity, I had anticipated a better nights rest than that which I was about to receive. Having settled down in the duvet realm by 11.00pm, at 1.30am I switched on the bedside radio to listen to Radio 3 as I'd not yet managed even a brief snatch of slumber. A further 4 or 5 hours later and I'd still not managed even forty winks. It somehow felt like an overactive mind had determined to thwart my bodies rest requirement.

Sometime between 7.00am and 11.00am I did capture a few spasmodic moments of shuteye whilst purportedly listening to Radio 7 and Radio 2. I then allowed myself to slowly emerge in to a new brightly sunshiny day as I attempted to release a modicum of vibrancy from my shatteredly sleep deprived  body. I headed up to the arbour seat and was swiftly transfixed by the scuttling and chattering activity of the sparrows in the adjacent shrubbery, and the flittering of peacock and white butterflies over the rockery. As I rejoiced in the new seasons growth, I was almost able to forget my general state of shatteredness.

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

Sometimes

Sometimes life just feels good, no matter how ropey ones underlying condition may be. It's the simple things that count for so much; the delights of taking a shower comfortably seated, remembering how much one struggled before that simple installation of a seat was made. To relish a rare good nights sleep, waking in the morning feeling almost refreshed and, the odd muscular spasm responding to an appropriate medication.


Having registered with a different doctors practice on Monday, one fortunately within my restricted walking range,I had an initial consultation yesterday where I was able to initiate an essential modification to my precribed medications. To be honest though, even the most efficacious medications seem to carry with them some undesirable side effects and one has to carefully consider their relative demerits.


The GP I saw also appeared to be quite understanding about M.E. which was a very pleasant surprise, when one has become quite used to a rather dismissive attitude, seeing the importance of pacing and resting. She even seemed supportive when I suggested the importance of campaigning on ME related issues and how important an online presence had been for me. An acceptance (albeit reluctantly) of the quite dramatic limitations that chronic illness imposed on any socializing activity, was for me a significant turning point, I was no longer held hostage by a recklessly seething self-pitying anger. The more I resented the condition, the more difficult it had become to develop any kind of strategy to cope with it; acceptance enabled me to regain myself.


Sometimes, life just feels good - just venture into the garden, take a few snaps - Spring is so much in evidence ...

                                               Click on image to enlarge

Disjointed Time

Concentration was in short supply - a natural adjunct to the state of shatteredness and, last night I was in bed by 9.30pm (BST) being barely able to stay awake; attempts to stifle yawns proved futile. The only option was to yield to the bed rest impulse. Once abed the plot line changed; acute discomfort in wrists and hands, aches and cold shivers and shudders in torso and limbs generally, militated against the necessary restfulness. I applied a wrist splint, took a couple of tramadol 50mg, and removed my pyjama jacket, in an attempt to ease a frustratingly generalized sense of dis-ease.

Come 12.00 midnight, I began to feel more comfortable than I've felt for several weeks and, yesterday's sneezes and watery eye sensations seemed to have vanished. Quite strangely, once I began to feel comfortable I also began to feel wide-awake and, unfortunately, this state of alertness was my companion throughout the night. Wouldn't it have been wonderful to have felt so comfortably alert during the preceding day, or indeed any day, when full advantage could be taken of this rare experience? For at least the first couple of hours I found myself basking in this new sensation, with only a niggling concern that this nocturnal liveliness of mind would no doubt carry with it a penalty of shatteredness later in the new day. At 4.25am, I succumbed to the temptation of switching on the bedside radio and tuning in to Radio 3. I really enjoyed the rich miscellany of classical music, although on this occasion I had been hoping that it would lull me off to the land of Nod but, instead , I listened in a state of entranced alertness. I only managed to snatch some real, albeit intermittent, shuteye between 8.00 and 10.00am.

A brief walk up the road shortly before noon, to register with a conveniently local GP practice, post off a completed census form, and collect a wholemeal loaf from the bakery, was about all the exercise I could manage. Much of the afternoon has been spent reclining in the living room, Radio 4 presenting an interesting audio wallpaper whose weave I find myself drifting in and out of.

Just Another Day

Yesterday, I released myself from the duvet lair sometime after 10.30am then did very little apart from despatching a few e-mails as part of the Armchair Army in solidarity with the "TUC March for the Alternative". I also felt quite privileged that my name was borne on a Broken Of Britain T-shirt worn by one of the marchers.

I did manage a little walk with my beloved, nowhere near as far as I'd hoped even though a little further than the previous afternoons totally abortive attempt (on that occasion muscular spasms in thighs, as well as calves, conspired with a spontaneous dissipation of my limited stamina reserve, to thwart the endeavour). Even with just that minimal activity I felt totally shattered and reluctantly retired to bed at 9.00pm (GMT) with not even an egg-spoon of stamina in reserve.

Ma belle and I did attempt to watch a bit of light-relief TV, au lit, but sheer exhaustion won out over entertainment. I did, however, remember to put the clocks forward, in readiness for the early morning transition from GMT to BST. I seemed to manage a little more sleep than I do on many nights but, I still felt shattered when I emerged from the duvet realm at 10.30am (BST).

I've never fully recovered all-day today, even having to divide my modest dinner portion into two - split between lunchtime and teatime - to give my ailing digestion an easier task. Apart from the abdominal discomfort, familiar cramping spasms in calf muscles have formed an unholy alliance with excruciating twinges in my thighs whenever any movement necessitated even a moderate degree of stretching.

Visits to the loo have been irritatingly frequent, the dreaded gut-rot has plagued me all day.  A differently aching muzzy head and spasmodic bouts of sneezing have added to the day's rich tapestry; for the first time in ages I suspect that I could be coming down with a cold! Considering that for several months before, or when, I first succumbed to ME I constantly struggled with flu-like symptoms – full-blown colds have been markedly absent during the past seven years

Sorry I'm Not Marching

Just to assure you that there are many more of us who would like to be out on the streets, demonstrating against the governments ideologically motivated austerity programme, if only our health & stamina would allow it.

Why are you so committed to mollycoddling the economy destroying bankers whist punishing the low-paid and incapacitated?



message sent to PM, Deputy PM, and Chancellor on 26 March 2011

spoilt by lack of choice

Just how irritably tetchy, like an overwound spring, I'd become wasn't immediately apparent but, (these days) the most minor event goes wrong and, wham, bam ... I'm in there without so much as a by your leave. I feel sorry for the recipient of the agressive verbal outpourings that ensue, it just seems so contrary to my (what was always seen to be) laid-back temperament. To be honest I never suffered fools (especially the supposedly intelligent ones) gladly but, would always deal with the situation in a calmly measured way, at least that's what I attempted. Nowadays it's shoot first ... ask questions later.

On the one hand I know that suppressing anger / outrage can have a negative effect on one's psychsomatic well being but, at the same time, rapidly vented anger leads one into a lingering slow-motion period of regret, the outrage having frequently been disproportionate to its triggering event. Unfortunately I never have sufficient stamina to release the pent up frustration by more directly physical means - walloping a punch-bag, bopping the night away, even going out for a lung stretching high speed walk is out of the question - so I'm left with a fiery verbal temper.

Since succumbing, eight years ago, to this excruciatingly painful, socially isolating, chronic condition, the irritability quotient seems to have multiplied in an almost logarithmic progression. Intense frustration arises on occasions when I've decided to go with ma belle to do some shopping, only to find that minutes after belting up in the car I suddenly feel too discomforted and unwell to pursue this course of action. At other times I arrive at the shop and have to find a place to sit down, in splendid isolation, whilst ma belle does the shopping. Bracing myself for such outings as visits to shops, GP surgeries, or indeed any priorly arranged appointment, swiftly depletes my already limited stamina reserves. Should a last minute change occur to any of these plans, that's when the spring snaps ...

What surprises me most is the high degree of contentment I have in simple pleasures such as sitting out in the arbour seat, observing the garden's flora and fauna, or basking in the presence of my beloved in the evening. I am essentially a happy, easily contented person; I just wish my body would allow me to socialize more, rather than constantly having to fall back on being self-contained. An asocial mode of being is not my lifestyle choice. 

Close Encounters of the Flutter-by Kind - now you see me ...

situational frustration

Frustration intensifies, normal ‘healthy wellness’ is becoming too much like a vague distant memory; I struggle to recall what it was like to be able to freely socialize. The once taken for granted now seems to define the height of luxury; to just pop around to visit a friend or go out for a drink, to go to a cinema, a theatre, a concert or an exhibition without having to weigh up whether my resources of physical and / or emotional stamina are up to the task, all that seems such a long time ago.

It’s even many years now since I felt able to attend a church service; just the fact of having more than a couple of other people in close proximity, without feeling able to freely escape (without causing a disturbance / disruption) is sufficient to bring on the cold sweats and palpitations. It’s like a strange variety of claustrophobia, the peopled environs seeming to act as a creeping tourniquet being applied to my chest and abdomen, the presence of these others, coupled with the functionally imposed duration, seems to overload my senses; at times, even just having a couple of visitors at home can cause a similar discomforting sensory overload but, at least in these circumstances I am able to retreat elsewhere in the house.

Of course these situational responses can’t really be separated from the sundry aches, pains, and muscular spasms which are the situation's all too frequent accomplices.