Changing Conditions

 

Sometimes conditions affect one in unexpected ways. I found it difficult to cope with the heat on the warmest of our summer days, flagging with fatigue after less than half-an-hour sat out in the garden, in the shade of a parasol. The only answer was to retreat into the house, draw the curtains, and switch on the
oscillating fan.

 

As daytime temperatures have cooled down, and an occasional chilly dampness returned to the equation, some of the old familiar aches and pains have decided to re-inhabit my corporeal being. This correlation of events, leads to a suspicion that these aching components are perhaps more to do do with arthritic and rheumatic twinges than the underlying neurological condition. No sooner have I proffered that suspicion than I recognised that a different interpretation was also plausible.

 

As more moderate temperatures returned, the temptation to tackle a few additional ‘light’ gardening and household tasks was all too easy to yield to. My main problem is a tendency to only listen to my body when I’ve almost drained my low stamina reserve. The trick of ‘pacing’ is to always keep a little stamina in reserve, otherwise any further exertion almost inevitably results in some kind of payback.

 

In the course of the past few days, a light giddily disorienting headache, accompanied by sudden onset pallor has been a recurring theme; my erratically disrupted sleep pattern (during my required dozen hours of bed rest) does little to alleviate such irritations. At other times the sense of being ill-at-ease within my own skin, a sensation that the skin is too tightly constricting the flesh of torso limbs and digits, proves grindingly nausea inducing.

 

I am thankful that, at present, the gnawing tenderness of glands under the jaw and in the armpits is only quite rarely experienced.

 

My beloved ‘Bright Light’ has been enjoying a holiday from the workplace, last week and this, but finds herself needing plenty of rest so, whilst I’ve always revelled in her company, we’ve been kept busy keeping an eye on each other, each making sure that the other doesn’t overdo things. My life has never felt so complete as it has in the time since meeting and marrying ma belle; her faith and loving disposition makes me feel privileged to know her.

utilized day but what a night

And yesterday I was gifted with a little extra stamina and, I also felt capable of correctly pacing my utilisation of this resource.  Took advantage of this little power surge to top-up and refill the sundry avian feeding stations in our garden; meal worms, sunflower hearts, black sunflower seeds, suet treats etc. most of which swiftly attracted a miscellany of birds ranging from starlings, blackbirds, finches, blue, coal and great tits, collared doves and the odd wood pigeon were all ready for some superior dining experience. I swiftly realised that all the birds’ watering stations needed de-icing so heated up some water.

Already my halo was shining and, I felt totally in control of my physical stamina resource. Mid-afternoon was time to sort out the main aquarium, changing 30 litres (out of the tanks 180litres) and changing nitrate removal filter and a couple of others. Proud of my achievement I relaxed a little before par-boiling a few potatoes, ready for roasting alongside the already simmering casserole which I’d prepared on Sunday.

That’s when the tiredness hit but, fortunately, not uncomfortably so. Come bedtime, I started to feel that I was being punished for the day’s moderate exertions. Perhaps I’m not handling my pacing all that well. Tenderness of the glands under my chin and in the armpits seemed to be sufficiently calmed by a fairly light dose of painkillers but, obviously I’d been deceived again!

Having joined my beloved au lit, decided to watch a diverting little sitcom on TV before snuggling down.  Within about ten minutes of attempting to settle down, the peripatetic clog dancers decided my lower limbs were an ideal place to practice. The duvet felt as if it was scrubbing the skin off my toes as a nausea inducing bruised aching feeling ambled from calf to thigh and back again. Whatever angle I positioned my legs bent or straight, stretched over the end of the bed, hung out over the bed side, the disconcerting ache continued. At one stage I half fell from the bed, my right calf resting on the rug whilst my left lower limb remained in bed, a real groin stretching experience. I can assure you that this posture wasn’t the result of any voluntary action.

Next thing, the old familiar nauseating aches in both arms began to do their darnedest; applying wrist support splints initially seemed to make little difference. I found myself unwittingly whispering, and occasionally screaming, profanities against the Gethsemane night, alongside whimpering like a lonely puppy. Many hours later I started to enjoy a little post-dawn sleep.

Reluctantly, I emerged from the duvet lair, and returned morning greetings to the bright shiny sun!

normality may be resumed ...

 

Back to normality; these days I’m somewhat at a loss when trying to describe what is normal for me. At what point on the scale (and intensity) of regular aches, pains and general discomfort, lies my norm? Pain free days are a fondly remembered experience, albeit never fully appreciated at the time but, rather taken for granted.

 

Last weekend, feeling a lot more at ease and alert than I had done for some considerable time, I carried out a few extra tasks on the Saturday and was relieved to have an equally good, although more restful, day on the Sunday. Tuesday and Wednesday were the days I suffered payback, from the weekend’s exertion; almost all parts of torso and limbs took pleasure in competing for the max discomfort trophy. Shatteredly de-energized, all became a struggle; it even seemed to require a tremendous effort of willpower to enable me to partake of a little light dietary sustenance.

 

Thankfully, that more extreme discomfort has eased and I’m now back to that elusive norm, where I’m able to concentrate on whatever I’m listening to, observing or reading. Perhaps that is what I should take to be my norm; those days when the gift of concentration is restored/present; the rest is simply passing time!

 

Watching the Red Kite riding the thermals, in clear view from my comfortable armchair, at times circling low down over the top end of the garden, brought a little brightness to a drearily grey gloomy day. And once again I celebrate the joy of being here and now, privileged in being loved and ready to share that love, in what can sometimes be a cruel and heartless world, ruled by greed and self-interest

 

I really must count my blessings!

Pacing can be a Pain

 

 Since yesterday lunch-time the discomfort has become quite extreme, in fact I don’t know why I try to soften the sentiment by substituting the word discomfort for what has ranged from excruciating pain through agonizing, nausea inducing, aches.  For several days back pains have flared up, presumably related to the herniated disc, to the extent that it has proved virtually impossible to find a comfortable position seated, reclining, or attempting to shuffle about, for considerable periods of time.

 

For a couple of days my lower limbs have had that achingly rubbery feel that I always used to associate with a bad bout of flu. Cervical and axillary lymph nodes, in neck and armpits, have once again taken on a most disconcerting tenderness, as if striving to draw my attention away from those aches that seem to flit between elbows and wrists. Gosh, as I write this down, it’s just dawning on me what bodily excitements I bear witness to.

 

Chronic abdominal spasms, and erratic spasms of irritation in the upper digestive tract, make almost perfect companions to the not infrequent chest pains. It’s almost as if some great controller has decided that no part of my torso or limbs should feel lonesome; I must admit that my body’s erratic thermostat, with the dance between overheated and over-chilled clamminess, is beginning to feel absolutely normal.

 

A couple of weekends ago, I was so proud of my achievement in attending two events

of moderate socializing on consecutive days, but within thirty–six hours payback had well and truly kicked in. On the Monday, after the social weekend, it came as something of a surprise to hear my GP utter those unexpected words, “don’t push yourself”. When it comes to an illness like ME, there couldn’t be any more sensible words of warning. Trouble is, on those rare occasions, when one feels able to manage a modest amount of exertion, it’s not always obvious where the boundaries lie.

 

Pacing is so vital but, at times, one seems to be set on an almost interminable learning curve.  

once more to the land of A&E

Yesterday morning I was feeling a little more shattered than is my norm but, I managed to remove myself from the duvet lair by 11.30. A brief bout of surfing the web provoked no enthusiasm so, I settled for applying Windows Update to sundry machines whilst listening to something or other on the radio.

Early afternoon, when ma belle and Beth had returned from a mini shopping spree, I prepared a griddled salmon, peppers and mushroom stir fry served with jacket potatoes but, during this (none too taxing) food preparation I began to feel a bit more jaded than usual, even becoming a little stressed.

At about 16.00hrs, I walked with ma belle to collect a prescription from my GP practice, approximately five minutes walking time; I found myself struggling to keep pace with Helen and, apart from aching lower limbs, I became a little breathless. Having collected the prescription the next phase was to drop it into the pharmacist whilst we went to the café a couple of doors along.

That’s when things began to fall apart; even the few yards walk seemed a daunting task as giddiness, breathlessness and a tight constricting sensation in chest and abdomen took control. My beloved took me back into the pharmacists where I found a seat and was proffered a glass of water. An overwhelming cloying discomfort through head, torso and limbs, briefly took control before I began to feel more settled. Meantime, ma belle chauffeuse had brought the car around to the pharmacy to run me back home.

This being the second time in a few days when I’ve experienced such un-nerving symptoms, it seemed a good idea to try to fix an appointment with one of the GPs in my practice. A doctor spoke to me, and ma belle, over the ‘phone and, he thought it imperative that I went down to A&E at the District Hospital.

I was really impressed by the efficiency and thoroughness of clerks, nurses and doctor in the department. I was sent through for initial assessment, BP check etc., within ten minutes of reporting at reception and was wired up for an ECG within thirty minutes. The doctor who examined me was extremely thorough, imbuing me with some much needed confidence, as he sounded out my chest and painstakingly examined the whole abdominal region. He inserted a canula in my arm in preparation for taking several phials of blood for testing, and then requested a urine sample.

The GP, who had suggested I attend A&E, had already checked with the department that I’d arrived and enquired how I was. My blood pressure was rather high (high blood pressure seems to be trending with me these days), even the diastolic had gone soaring, the first couple of times it was checked. Later, my blood pressure was checked again, this time in both supine and standing positions.

Once blood test results had been obtained the doctor returned and re-examined my abdominal region. As the blood tests were all clear he prepared me for discharge but, I then had to wait for some antibiotics to be dispensed as the urine sample had shown up an infection. Once again I must express my gratitude for a wonderful NHS and hope, campaign, and pray that the Tory plans to destroy it can be de-railed.

This morning, shortly after 9.00am, my GP rang me to see how I was. With such concern being shown, I am more than ever convinced that my transferring to the neighbourhood doctors’ surgery, from the one I’d been with since the 1970s, was totally fortuitous.

tasting the air - thwarting the robber barons

For once, I’m thankful for the thieving profiteering utility companies. Being reluctant to put on the fire, hence supporting their practice of extortion, I discover that it’s a more pleasantly comfortable temperature outside and, a walk in the rain (hand in hand with my beloved) provides me with a little long overdue exercise. For the past few days sundry ailments, of both very and less familiar varieties, had prevented me from

tackling little more than a walk up to the garden pond to feed the fish.

Its strange how often dull damp days have the effect of making the houses interior feel extra cold; it feels so much warmer once outside, embracing the elements, on such days as this.

The preceding lines were written yesterday, before I ran out of the necessary stamina / powers of concentration to proceed further. Today, once again, it began to feel almost intolerably cold sat in the house but, having donned an appropriate lightweight waterproof to wander up the garden and feed the fish, the external temperature proved sufficiently comfortable for me to enjoy a garden snapshot session.

Prior to this little venture into the great outdoors, I’d been feeling totally ill at ease inside my own skin; the pain emanating from armpits, upper arm, elbows, wrists and, spasmodically, the rib-cage served to sustain a nagging sense of nausea. For an hour or so it seemed impossible to find a position / posture that would permit me to either listen to the radio or read a few pages of a book without, most disconcertingly, hurting! So, once again, my reluctance to further support the robber barons, encouraged me to take to the open air, as an exercise in distraction from the prevailing dis-ease.

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.

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.

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

Of LIMITATIONS and ENJOYMENT

OF LIMITATIONS and ENJOYMENT

Middle of the night and nature called; an attempted leap out of bed became the more familiar slowly lumbering self removal only, this time, with added difficulties. For the past two or three days the back pains had all but disappeared, only the more regular  discomfort remaining in its stead but, now it seems to have returned with a vengeance. It’s strange how one’s own body delights in playing tricks; just when you think it safe, to carry out an effort of moderate exertion, it sends out a disconcerting alarm signal. If only that signal was as transient as that of an alarm clock, disappearing as soon as one taps the necessary button, there would not be a problem but, unfortunately, these signals are not of that peremptory nature which curtails one’s pursuit of the (unwittingly) harmful course of action. These signals always seem to arrive after the harm has been done, swiftly transmuting the alarm call into a sustained aggravation.

So, you may well wonder, what transgression had I committed against my ailing torso? All I’d been doing was carrying out a partial filter and water change in our largest aquarium, changing two of the filter pads and performing a less than 20% water change. I could (almost) swear that I carefully controlled my posture during the entire operation, to minimize the risk of detrimental health effects, but my body makes a different declaration.

Prior to that minor operation I’d made a visit, with my beloved chauffeuse, to the local aquarists to replenish necessary supplies. The journey is approximately 2 ½ miles but, as is becoming an increasingly common experience, it felt like a major expedition; even travelling at speeds which never exceed the legal limit, on primarily suburban roads, can seem  like  we’re exceeding Mach 1 – my body  crying out in reaction to the velocity at which we’re hurtling through space. 

The whole sensory overload experience seems once again, and most regrettably, to be edging its way into taking control of my lived experience. I’m just hoping and praying that I won’t tumble once again into that convulsively shattering realm.

Strange as it may seem, apart from the sundry ailments which posit substantial limitations on my activities, I do continue to enjoy life. The simple pleasure of observing, and encouraging, the flora and fauna of our garden is a wonderful joy bringer, second only to the presence of my beloved. As I’m no longer able to cope with cinema or theatre-going, the increasingly wide range of films available on DVD proves a real blessing. My enjoyment of cooking, provided a fair range of herbs and spices are to hand, is another source of pleasure, as is the consumption of the end product! I must admit that much of the time I don’t really feel unwell, sundry muscular and glandular aches and spasms have quite simply become an accepted component of normality; it’s only when i attempt to stretch my activity output that I’m quite forcefully reminded of my limitations.

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in case you missed yesterday's frivolous posting on 'Mal's Murmurings' I've repeated it here :

A Nation’s Addiction?

A radio news bulletin informs me that we’re becoming a nation of TV addicts, adding “according to a survey of viewers“!

They should try surveying non-viewers, only to discover that nobody ever watches TV in the UK!