... and RELAX (again)

Another afternoon in the garden, primarily with sun hat donned, relaxing in the shade of a parasol. Once again ma belle donned her gardening gear, on her return from morning worship, and has been tackling further border areas in an attempt to slow down the ground elder's rate of advance. Mid- afternoon I decided to load a wheelbarrow with the rich humus from the bottom of our compost bin and duly scattered it across the border that was yesterdays scene of Helen's battle against the pernicious weed (ground elder).


My body informed me that it was time to quit the exertion routine by the time I'd dealt with that one barrowload; I don't really intend to risk any dispiritingly excruciating post-exertional malaise. Relaxation is also the theme for the evening; having watched 'Songs Of Praise' with my beloved she then headed off to Hampsthwaite where she's taking the service this evening and, on her return, we'll probably switch on ITV for a bit of escapism compliments of "Lewis".


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

and a little relief

As the week went on, my body cried out for an increasing amount of attention. Alongside the all too familiar muscular aches and spasms in upper and lower limbs, the spasms in the calves now accompanied by random painful twinges in the thigh muscles, my GORD (reflux) symptoms seemed to flare up once again, in spite of having resumed the double dose of ppi's.

A totally aching shattered tiredness has frequently caught me unawares mid-evening, my minimum twelve hours bed-rest per day (apparently) not serving to alleviate this excruciating fatigue in any way. At times, whilst (relatively) comfortably seated, a floating giddy headedness accompanied by peristaltic waves of nausea overwhelms me. It feels at times as if the whole ribcage is convulsively contracting and an examination by my GP, yesterday afternoon, confirmed much volatility in the abdominal region for which he has prescribed some anti-spasmodics as well as arranging for me to have a colonoscopy. I've got to admit that the combination of GORD and a spastic colon is not one that I would recommend.

Today has been a day of glorious sunshine and, I've spent several enjoyable hours sat beside the garden pond whilst ma belle pursued her task of clearing away some of the ground elder from one of the garden borders. Prior to that leisurely open air pursuit, we had both enjoyed watching "The Taming of the Shrew", shown as a tribute to Elizabeth Taylor - the chemistry between her and Burton is so wonderful to witness. And now, as I scribble these hasty words, we're watching "Elizabeth Taylor - A Tribute" on BBC2.

as boldness dissipates

Last night, once again, sleep had no intention of meeting a need; for hours on end it refused to intervene in response to my bodies requirements, restlessness reigned supreme. As we moved into the mid-morning hours a familiar quandary returned; do I just rest here in the hope that much needed sleep will catch me out or, do I get up and put on a bold face as I struggle to stay awake.

The boldness swiftly dissipates as excruciating discomfort becomes the latest manifestation of tiredness; Malcolm the bold crumbles into Malcolm the wimp. By the time in the early afternoon that my physio arrives, for a chat and application of the magic needles, tears are ready to well up. The tears are sourced from a deep rooted frustration at the sundry disabling ailments that have plagued me over recent years and, the fact that they're such a cause of worry and concern for my beloved. 

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