just like a woman

Sometimes we depend too much on the information presented by an official department, in this case the Endoscopy Unit at the District Hospital, that we are in danger of failing to notice any contradictions present in the leaflets provided. As mentioned in my previous post, my colonoscopy has been brought forward to tomorrow so today is a day of vital preparations.

At the head of the page titled 'The Day Before Your Examination' that "at any time today you may drink any of the following: Tea / coffee (with milk or sweetener if desired) ..." yet at the foot of the same page (following instructions with regard to Breakfast, Lunch and Supper, as well as preparing and taking the sachets of bowel scouring preparation) we are told that "Tea / Coffee after Lunch should be black" and that's with lunch allocated for midday!

This footnote also informs one that "no further solid food or milk and other dairy products are allowed after  Supper until you Hospital Procedure". The allocated time for supper is 7.00 - 9.00pm when it clearly states that "No solid food is allowed." Surely the note should therefore read that NO FURTHER SOLID FOOD ..... ALLOWED AFTER LUNCH UNTIL YOUR HOSPITAL PROCEDURE"

 For lunch I had a portion of chicken breast (steamed) and my next solid food will not be permitted until after my procedure due to commence sometime after 3.15pm tomorrow. I’m already craving bread, crisps and even fruit but I’ll just have to grin and bear it. I’ve never felt such desperate need for a cigarette since I gave them up last June.

A warning that I, as a male of the species, would have liked to have been given concerns the very drastic nature of the bowel preparation. After two violently liquid diarrheal episodes I felt, a short while later, an urge to empty my bladder (having been encouraged to consume lots of liquids) and considered it safe to do so from a traditional standing posture. Unfortunately the attempt to urinate produced a simultaneous anal leakage. Since then it has been essential to adopt a woman's seated posture whenever I need to take to take a pee.  That probable side effect would have been worth knowing about!

Urgent Preparations

And all of a sudden it's panic stations; after last month's sigmoidoscopy an appointment was made for me to have a full colonoscopy at the end of this month. Having just had a late lunch today the telephone rang; the endoscopy department had a cancellation and they wondered if I could go in on Friday afternoon. This means of course that I've unavoidably breached the dietary preparations for "Two Days before your Examination" and tomorrow will be the day for taking two sachets of the purgative solution (Sodium Picosulfate) and my last minimal low fibre food intake will be at mid-day, midway between the two doses, although i am permitted a clear soup or meat extract drink and perhaps a little clear jelly sometime between 7.00 and 9.00 pm.

It's not a case of me having the largest of appetites but, as the appointment on Friday is not until 3.15pm, I feel pretty certain that I'm going to be somewhat pre-occupied with hunger pangs. On reading the preparatory notes I find that it's necessary to "Talk to your doctor before taking the bowel preparation if you:"... - the relevant note here being "Have reflux oesophagitis (a condition where acid from the stomach enters the oesophagus". As things stand, I've been treated for this condition for a number of years so, a hasty phone call to my GP's surgery was in order. Within ten minutes a doctor called me back and assures me that, as the 2x30mg lansoprazole along with occasional doses of gaviscon kept it reasonably under control, it would be OK if I just continue with that medication. [My primary concern had been that the notes went on to state that "some conditions may require you to be an inpatient for administration of bowel preparation" and, somewhat ironically, I've always felt that when one's feeling grotty hospital is the last place you want to be!]

passively full days

Though still, of necessity, doing little that requires any degree of exertion it's amazing how full my days seem to be! My noblest intention of posting more regularly (to the blog) remains just that, an intention; perhaps I could blame the paucity of posts on not wanting to bore my readers but, that doesn't seem to have bothered me in the past. Perhaps the fact that my days seem to be 'full' is quite simply a reflection of my somewhat restricted stamina levels; had I a greater reserve of stamina then I would be able to fit much more into my days.

Never having been much of a sun worshipper, it's really quite amazing how much time I've been spending sat out in the garden during the current prolonged spell of dry sunshiny days. Parasols are regularly erected at the table in front of the bench, immediately behind our living room, and beside the love seat near the pond, to offer a degree of protection to this fair-skinned beauty. Even whilst sat beneath the parasol's shade I wear a hat, taking full heed of the advice I received when the basal cell carcinoma was diagnosed and excised  from my back last year. The shade, proferrred by the parasols, seems to camoflauge my presence for the garden's avian* visitors which have quite frequently settled themselves down in much closer proximity to this human interloper.

An irritable, intensely frustrating, spastic colon has ensured that I rarely ventured far from house and garden in recent days, my most distant jaunt being to 'Open Church' at St Marks - approximately 10 minutes walk - for coffee and a chat. Even that little stroll could prove a little more difficult now that my back trouble (related to the herniated disc?) has flared up again; hopefully a combination of tramadol, ibuprofen gel, and a firm back support will keep that little problem in check. Fortunately, I seem to have regained an ability to concentrate on doing a bit of reading, in the past few days having read Tony Benn's 'Letters to my Grandchildren' and the first couple of hundred pages of Manning Marable's 'Malcolm X a Life of Reinvention'.

Recent bank holidays have meant that I have been blessed with a few more days basking in the company of ma belle Helen, life could hardly be better.

* more on the birds in the garden on my beloved's blog


***************

earlier today I posted a couple of snapshots 'must be a tea garden!'  to Mal's Picturebox

new web album - bloomin' spring 2011

I have just added a new web album of 60 photographs, Bloomin' Spring 2011, to our New Luv4Sinners website!

an Easter Declaration

pond life

just had to video this - loved the way the tadpoles were swimming around
the basking common frog in our garden pond this morning

Oh What A Night

It was another one of those, fortunately not too regular, nights of erratic and painful discomfort. As I needed to be up and about this morning, at a much earlier hour than usual, I decided to take a shower before retiring au lit. One (at least this one) would expect a late evening shower to prove an aid to relaxation and rest but, that wasn’t to be the case.

Firstly, my shoulders didn’t seem able to find a comfortable position whichever way I sought to settle down for some much needed slumber. Next the calf muscles kept tortuously spasming and, in next to no time a painfully aching lead laden hollow sensation in my left wrist and forearm colluded in the protest movement. Having applied my wrist support, to alleviate the agonizing discomfort, I felt ready once more to enter the land of nod but a rebellious body refused to comply with its own needs.  That’s the point when the expletives came into play as I got myself out of bed and paced around the bedroom and landing.

 On returning to bed my ribs and flesh felt  as if they were disconcertingly trapped in a non-elastic skin whilst, simultaneously, an adequately loose fitting pyjama jacket suddenly felt unduly constrictive.  PJ’s duly removed, I felt that settling down for the night would now follow just as naturally as day follows night; wrong again! Wilfully directed arms and legs flailed, this way and that, as comfort became a completely elusive goal. By 3.45am, still uncomfortably restless, I decided to take a couple of tramadol 50mg capsules and, within half an hour I began to feel much more relaxed and eventually managed to snatch an hour or two of slumber. 

 I suppose that, at the back of my mind, the prospect of having to emerge at 7.00am to insert a couple of suppositories, in preparation for a 9.10am appointment for a sigmoidoscopy at the District Hospital, wasn’t totally conducive to getting a good night’s sleep. On normal days, the period between 7.00 and 10.00am frequently proves conducive to some most refreshing rest; it’s almost as if an awareness of missing out (on this familiar luxury) had militated, somewhat perversely, against my taking advantage of more usual hours of nocturnal rest.

This morning, I was actually admitted to the consulting room a few minutes early and, much to my relief the sigmoidoscopy revealed no abnormalities but, an appointment has been made for me to undergo a full colonoscopy in one month’s time.

... 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

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.