CHANGING NOCTURNAL TRADITIONS - (one man, one woman, and their dog)

Last night, once again, was of the somewhat discomforted variety, regardless of a pre-emptive dose of amitriptyline and tramadol. It was rather difficult to clamp down on the moans & cusses that seemingly forced their way out of my mouth; my beloved responded by cuddling me tight (until she was overwhelmed by sleep) but then, the cuddles were followed by a gentle patter of feet, approaching the bed, as our beautiful hound came to add further comfort, stretching his forepaws across my upper arms and his head across my shoulder, and onto my neck as he lay along the edge of the bed.

You may well think that Piper, our beagle–podenco hybrid hound, was very clever to hear, and respond quite swiftly to, my moans upstairs, when his bed is in a room, behind a closed door, downstairs. Up until a few short weeks ago he did indeed sleep downstairs, usually on a sofa in preference to his quite de-luxe bed. Matters changed when Helen had a bad coughing fit, at night, to which the solitary Piper responded by whining, barking and finally banging against the living room door.

After this sustained barrage of sound we succumbed to his whiles / concern and allowed him to run upstairs. That night he settled himself on the duvet, creating his own cradle in a ridge between the recumbent bodies of Helen and myself.

After a couple more evenings he had decided that he needed to keep an eye on us, sneaking through the living room door in the time it took to switch off a light. He soon decided that he didn’t like being alone and commandeered the bedroom armchair, equipped with an old blanket and towel, as his customary nocturnal roost.

Come morning, he pays a visit to our bed, as if to check we’re alright and still there. If he outstays the welcome of his inspection routine, he can generally be persuaded to go back into HIS chair!

Flummoxed by Circumstance

The heat and humidity of the past week have certainly, but unsurprisingly, had a detrimental effect on my relative state of well-being. Even before the hottest day arrived, I was already suffering payback, for over-exertion, in my desire to optimize the length of time & distance spent walking our gorgeous dog Piper.

Already impaired by that payback I'm somewhat flummoxed when trying to determine how much of my current ailments, tenderness of lymph nodes (both axillary and cervical), aching bones feeling somewhat as if they've been hollowed out and lined with lead and undergoing extreme gravitational tugs of war, are a continuation of the earlier payback and how much solely a response to climatic conditions.

I've reluctantly had to resort to supports applied to wrist, elbow, knee, ankle, and even tubular bandages covering most of my arm. I don't know whether this use of tubular bandage serves as some kind of lymphatic massage but, it certainly helps. Unfortunately, alongside the physical ailments, a re-active depression has had a deleterious effect on my ability to respond rationally to any minor physical or emotional setback.

Yesterday morning as I lay on my bed, chokingly sobbing, Piper ran up the stairs, placed his head beside mine and lay with me for a few minutes; that in itself demonstrated that his presence in our life proves therapeutic. I have actually managed a couple of shorter walks with the boy in the cooler parts of the evening.

Piper is certainly becoming more confident since joining our family, barking a confident disapproval of large darkly coloured dogs encountered on his walks, yet offering friendly sniff-based greeting to many other canines that he had at first cowered away from. Judging by this behaviour, I suspect that the scattering of scars on head and torso, received whilst in the pound, were caused by a really large dark coloured canine. He has certainly gained a good knowledge of our nearby footpaths and bridleways and seems to let his walker know when he's ready to head back home.

his mistress's scent

Piper

Piper

Although I spend much more time with the dog at home, than my beloved OH manages (owing to other commitments), she is definitely his dominant other. Fortunately, he now spends less time dolorously searching for his mistress when her other duties call and, this weekend he has been left solely in my charge, as his chosen other ventured down to the south of the country for a couple of days and nights. Now, after 10 hours of Helen's absence he has just been casting a few longing glances at the door of the lounge but, then goes trotting around the garden, looking for possible sources of mischief. On returning to the house he welcomes my attention before checking out the door once more, anxiously awaiting his mistresses return.

These days I hate, almost fear, spending evenings and nights alone in the house, feeling rather vulnerable, due no doubt, at least in part to my sundry physical (and reactive emotional) ailments but, I'm sure that Piper's companionship will help.

Shatteredness Conundrum

A SHATTEREDNESS CONUNDRUM


It's not so much the chicken and the egg as the pain or the tiredness.

Does weariness simply allow a latent pain to exaggerate it's presence or, is it the tired bodies vulnerability that allows a deep pain and discomfort to take hold? Today, a day of only minimal exertion, a sudden onset overwhelming sense of fatigue was swiftly subsumed into an entangling, nerve jangling, multiplicity of pains.

These acute pains, not the overly familiar dull aching wearying variety, swiftly took hold in ankles, knees, armpits and wrists.  The intense discomfort resulted in a sudden welling up, and gushing forth of tears; tears of frustration and, temporarily, despair.

I hate to take my pain medication other than when it's absolutely necessary although, I'm coming back to the notion that I should take the occasional pre-emptive dose as well. The problem then arises as to how I discern whether a lower or negligible level of pain is the result of this pre-emptive strike or, could it simply be a normal spasmodic reduction in pain level.

out of the kitchen and missing the heat

Although each hour, of each day, may seem to drag at present, it still amazes me how swiftly each year seems to pass. Most of the time each day has seemed to pass far to quickly, no sooner is one getting into it’s swing than tiredness sets in; gosh, I’m sounding like a real Grinch today.

The (current) absence of not only a functioning kitchen, but even sans kitchen sink, or even a single gas or electric hob, just seems to leave a hollow at the core of my being. Who would have thought that once, not too many years ago, I subsisted on a diet of predominantly microwaveable (so-called) meals; even in recent days, the cooking bug having for some time since had a hold of me, preparation has felt at times a chore too far, only reluctantly pursued. No working kitchen and an echoing void of proposed kitchen diner exuding its presence into the lounge, leaves one feeling achingly hollow.

I am indeed fortunate to have a roof over my head, a partner to love and be loved by, yet still I find temporary inconvenience a source of veering close to a state of reactive depression. It would be easy, of course, to blame my dispiritedness on my permanent condition of aches, pains, disorientation and unrefreshing sleep, which admittedly doesn’t help, but then I feel overwhelmed by guilt at my self pity. In a land where the government is determined to punish the poor, the  vulnerable and disabled in response to a crisis caused by their banker friends, what right have I to feel at all sorry for myself?    

REALLY THE armPITS

My status on Facebook, posted early evening yesterday, read as follows:

“Much of yesterday went far beyond the Gethsemane experience, more towards identity with the flaying on that early Friday morning. Just as one form of deep discomfort, of a tear and nausea inducng variety, seemed to be easing, elsewhere along the ley line of the nervous system came a sensation of searing tongs being applied to sundry areas of the upper limbs & armpits.

Application of supports (wrist, shoulder, back etc.) at times preceded a necessity to discard oppressive items of clothing, such as socks, cardigan, shirts. A necessity to spread out one's fingers, their proximity to each other promoting a tingling dis-ease, was accompanied at times by a the need to clench upper arms in an almost impossible tightness to the torso, aided at times by having a scarf strapping them down. Lower limbs flexed and turned - so much so that I became unsure about how many of the positions were consciously attained as opposed to a rather sustained involuntary spasm. it seemed as if painkillers were refusing to act as burning searing discomfort imprisoned me for much of the late afternoon and evening.

That was yesterday. Today is a better day thus far. Really enjoyed the House Group / Bible Study chez nous this afternoon. A wonderful time of fellowship.”

Sadly, it was only a matter of a couple of hours before the torment returned. Even picking up the small tablet pc or a newspaper, instantly caused a gnawing discomfort in wrists and armpits and, clasping upper arms tightly to torso did little to alleviate the onset of a nausea sensation. I remained grateful for those afternoon hours of relative ease, hanging on to the gratitude response by way of compensation for the fresh onset of dis-ease.

Last night (from at least 02.30 this am) I had one of the most sustained periods of sound sleep than I’d experienced in more months than I can remember;  that certainly seemed a good omen for the belatedly entered new day. The sense of being enfleshed in an undersized skin soon returned and much wrist-strapping, arm clenching (tightly to torso) was required. As ailments seemed to ease, my beloved and I ventured out for a meal at the local eatery, a    pre-emptive celebration for our upcoming anniversary. It seemed a good opportunity to dine out, as on both Thursday and Friday I have hospital appointments to attend at around the apposite time, and other arrangements already in hand for tomorrow.

No sooner had we been seated at a suitable table than the act of holding a simple menu card released discomfort in the armpits and upper limbs. I just wanted to scream out loud, take off jumper and shirt before clasping shoulders with both hands –  arms crossed in St Andrew’s fashion.  This particular treat was not to be, so we returned home to catch up on a TV programme (‘Trapped’) that we’d missed on Saturday. At least at home I could clasp myself tightly, whilst sitting shirtless with arms firmly at attention. Meanwhile

 I sought out my toe separators to place between discomforted / discomforting fingers in  a vain attempt to eliminate bouts of nausea.

Armpits seem to serve solely to alienate me from my body at present but, hopefully. a fresh dose of tramadol will eliminate the still too pervasive pain.

Eyewitness - Timeline - Headchange

This post also appears on Mal's Murmurings :

Eyewitness – Timeline – Headchange

150116 –  15.50hrs Attended Boots Optician for a (routine) eye test, reassuringly thorough, and made to feel at ease by optometrist, optician and all staff.

190116 Told to stop taking amitriptyline, usually taken at night, and sertraline, usually taken AM, with immediate effect. This was to be replaced immediately with trazodone, to be taken at night. When reading, as the pack advised, the enclosed Patient Information Leaflet it advised that one should not take trazodone if they have taken amitiptyline in the preceding fortnight!

As doctors, at surgery, were not forthcoming with a response to my concern, I quit amitrip and sertr. cold turkey, without taking the disputed new medication!

More details of these events can be found on my blog posts of 19, 29 and 25 January.

250116 Went to collect new spectacles from opticians – whilst en route to the opticians a most disconcerting sudden onset of a problem with my left eye occurred, A large floater, in the form of a black ring pirouetted through a full 360 degrees, dancing about and intermittently shooting at supersonic speed to a position several feet beyond my right side. My arms felt impelled to reach out to grasp this illusory element.

A few tests were carried out by the staff at the opticians but eye health seemed pretty good. I duly tried out and collevted the new spectacles.

020216 – took first dose of trazodone @22.20hrs

050216 – 12.30hrs fwd. Dramatically sudden decrease of vision occurred in left eye, an intensifying blurry veil stopping just short of total blindness, and a deep throbbing pain behind and surrounding the eye socket. When my beloved arrived home about 14.40hrs she immediately saw the need to drive me to the opticians pronto.

Both the opticians and optometrist carried out further thorough tests and scans, noticing a marked deterioration in my vision compared to my prescription of 15 January. The scans didn't reveal any damage or tears but, they made an appointment for me at Harrogate District Hospital Eye Clinic for 12.00 noon the next day.

By 23.00 hours my vision had improved significantly.

060216 – 12.00hrs attended Eye Clinic. Further tests and scans were performed before I went in to see the clinic's Consultant. After further tests, whilst I attempted to describe the experience, she gave a diagnosis of 'ocular migraine',(although typical episodes tend to disperse much more quickly than was the case for me!)

I subsequently discovered that anitriptylene has (not infrequently) been prescribed as a preventative for ocular migraine!

Perhaps if I'd remained on amitriptyline the ocular migraine would have been postponed. Alternatively, these events may have occurred nuch sooner had I never been prescribed the drug (to assist with night pain alongside tramadol)!

080216 – A severe overwhlming headache, cheek ache, eye ache persisted for much of the day, accompanied by giddiness and nausea.

Every day since commencing with trazodone(on 2 February) I've emerged into the day with a throbbing headache and in a stateveering towards total collapse – accompanied by a grey pallor.


++++++++++++++

PS after posting this blog, a friend, with considerable medical experience, was chatting with me on Skype - he happened to mention that 'blurred vision' was a known side effect of trazadone! He was also well aware of contra-indication re amitiptyline / trazodone.

GOOD TIMES - BAD TIMES - Strangely NORMAL TIMES

Wrists in strong supports, left hand clasped tightly in armpit by right upper arm, right hand grasping left shoulder, upper left arm clasped tightly to side, and I want to scream. The nagging aching pain and discomfort little eased by 100mg of tramadol swallowed a couple of hours ago.

Everything felt fine when I decided to move from reclining to upright posture, but then just switching on laptop and tapping a few keys was sufficient to bring back the heavily aching nausea-inducing pain in the upper arms; the sensation not too dissimilar to a state of total exhaustion when one is prohibited from rest or sleep.

When lying down a throbbing ache envelops my knees; bending knees to make a tent under my shrouding fleece temporarily alleviates the gnawing knee pain. Next it’s the toes that are the problem, a sudden burning sensation in lower digits all too swiftly feels as if my skin is being grated by the restraining pressure of what are usually quite normal socks. This latter item swiftly becomes an instrument of torture and, their removal does little to relieve the sting.

It’s beginning to feel like some sort of punishment as atonement for having two reasonably good days. On Friday I finally managed to visit the opticians, first time I’ve managed that since 2003, previous attempts having been thwarted by sensory overload and/or panic attacks. I t really felt like quite an achievement to have undergone a range of tests by both optometrist and optician. The optometrist was genuinely interested to learn a little about ME (and my denouncing of the wastebin CFS diagnoses) and really put me at ease.

Fired up by this amazing achievement, next day I decided to attend to one of my problem PC’s that I hadn’t touched since September. No amount of online research (and subsequent application) resolved the issues that had thwarted my efforts last year. There was nothing for it other than fresh installation of Win 7 and countless updates to be applied.

By mid to late evening I was quite shatteredly exhausted but, having go to bed sleep proved extremely elusive. Illusory sleep turned out to be the lesser nocturnal oppression. Wrists, elbows, lymph nodes, and lower digits screamed out for attention. Tubular bandages over elbows and much of the arms, elasticated metal spined wrist supports offered little in the way of pain and discomfort relief and, the burning flayed skin of the toes screamed out in accompaniment to my expletive laden vocalising. An application of moisturiser to feet and toes proffered temporary alleviation but, I’m not sure whether it was the emollient or the massaging effect of its application that provided this relief. This procedure was repeated several times during the course of the next couple of hours.

 By 11.19 this morning I reluctantly emerged from the duvet lair only marginally less exhausted than the previous late evening. What of today? You may well ask! The first paragraph describes some of my afternoon.

hazed out days

Just a vague dull irritating ache throughout torso and limbs, feeling as if a detached “I” was looking on pityingly. For the past couple of days this seems to have been my exhaustingly shattered state of being, an exhaustion of mind and body, almost as if it’s payback for forcing myself out of bed after a mere 11 hours of intermittent unrefreshing sleep.

 I expect, and reluctantly accept, those cloying nausea inducing aches and pains, seemingly emanating from cervical and axillary lymph nodes. Familiarity has also enabled me to accept the more erratically intermittent acute pains in joints and muscles, which pain-killers can control to some degree.  Even the gnawing, discomforting, symptoms of IBS never seem quite as disconcerting as this seepage of hollow ache which seemed to embrace both psyche and soma.

Today, I at least feel awake and, I’ve managed to prepare a kedgeree for our main meal as well as a gently peppered chicken, peppers and mushroom casserole for Sunday and Monday’s lunch time. My halo has been polished once more. I’ve got to admit though that the slightly warmer weather does me no favours in terms of stamina; I only wish its enervating effect could be transformed into true relaxation, serving to ensure some long needed refreshing sleep.

At least I’ve managed in recent weeks to enjoy BBC4’s excellent coverage of Cardiff Singer of the Year, and by way of contrast, mentally grooving to ‘Jungle’ and Mark Ronson, amongst others, transmitted to our sitting room courtesy of the BBC. The sound of each event has been much enhanced via the SoundStage (a sound bar with built in sub-woofer) bought by my beloved for my recent 71^st birthday.

Of genuine woes and fraudulent transactions

Today provides one of those unusual mornings, at only 11.45 I feel almost awake; a rare instance indeed! Just over a week ago I intended to write a posting, more a catharsis for me than a word for others, but an intolerable lethargy weighed far too heavily. My scribbling that day went as follows :

“And wimpishness knows no bounds, the tears flow freely, the sinuses discharge an uninfected load as earth’s rotation slows right down A flood of fear and selfishness combines

A flood of fear

And selfishness

Knows no bounds –

The tears flow freely

And sinuses discharge

An uninfected stream

Of hopelessness …”

My brain seemed blocked; no words would flow until, some twenty-four hours later, the above emotion transmogrified into the following doggerel:

                                            Dog Errol

                                          It never pours

but when

there’s more

to follow.

Rain never follows

an unending drought.

If once a mouse

should catch a cat

the fox would say

I smell a rat

Whereas earlier in the year, despite all too familiar aches, pains, and wooly confusion, I managed to remain quite upbeat, by early March my reserves of emotional and physical stamina had fallen from their quite low plateau. Even the most modest exertion seemed to wipe me out. It was as if I had to make an exhausting conscious effort to persuade my legs to move in the right direction, as I ventured out into the hallway; this would occasionally be followed by a strenuous mental effort to remember why I’d headed there in the first place.

Earlier today it seemed as if the sun would make an appearance but, as I turn back towards the window, hailstones are flailing down from the heavens, their rebound, as they leave the ground, makes mockery of my prevailing inertia.

No sooner had I jotted down the previous paragraph than the sun, in full glory, burst through the residual cloud cover as grey skies turned to blue. The swiftness of this transition would be hard to believe were it not experienced first hand by one’s own senses. So, you may add, “your senses are working, even if much else of your corporeal being seems to be giving up on you. Why don’t you stop moaning?” the latter question I’ve frequently asked myself but, it’s far too easy to succumb to more negative attitudes when your feeling several degrees below an iffy par.

*********

A gum infection, and accompanying toothache, really set me back and, as is its wont, the worst flare-up occurred on a Friday night and the dentist doesn’t work at weekends. Strangely, the pain seemed to emanate from beneath a crown; intellectually this made little sense as I knew that tooth had been root-filled many moons ago. The worst of the pain then presented itself under a wisdom tooth; when I had an emergency appointment with my dentist she noted that I nearly went through the ceiling when she tapped the offending tooth. She duly prescribed a course of antibiotics to combat the infection, halfway through which the pain seemed to have magnified, and with my somewhat iffy immune system sundry familiar ME symptoms returned to bite me, affecting my balance, brain fog, aching muscles, chronic IBS and diverticular disease symptoms seemed to think it was carnival time; they rejoiced as I slid further downhill.

I was feeling so dreadful that when I realized my beloved was going to visit her brother, and would be away overnight, the floods of tears mentioned at the beginning came into play. My only utterance, through my wimpish blubbering, to ma belle was that I was afraid that I was going to die alone.

Matters weren’t helped when an early morning ‘phone call wakened me from my fitful slumbers on the morning of ma belle’s departure. The call was from a credit card company suspecting there may have been a “fraudulent use” of my credit card and, I must contact them on an 0845 premium number. I went immediately to saynoto0870.com where I found an alternative number to contact card services. Just as well that I used a free number as I was talking to (or being talked at) the bank for 40 minutes when palpitations and breathlessness took over. My beloved fortunately had not yet set off, as she had to take over the conversation from me.

The annoying oiks on the banks end of the phone line endlessly repeated the same questions re a gambling website that I’d never heard of and had I made a £500 payment to that site on that morning. Although they acted on the basis that a fraud had been committed, somehow this payment had been accepted and would appear on my next statement. They then explained that in a fortnight they would be sending me a legal letter which I would have to sign to say I had not made this payment. The attitude of the people I spoke to left much to be desired, especially when dealing with people who have a chronic debilitating health condition. I was definitely made to feel that I was a prisoner in the dock being grilled by a particularly abrasive prosecution counsel.

The card was only renewed earlier this month and has never left the four walls wherein I live, breathe and have most of my being! It had only been used a couple of times online at companies with whom I have had regular secure transaction completed via a “verified by” security check so, one can only surmise that there is somebody either at the bank or one of these companies who has filched my card details.

Sorry for such a sustained moan but, it only serves to illustrate my roller-coaster ride.

 

                                          

what's in a day

It seems, and logically must be, impossible to know what’s going to happen one day to the next. Whenever we arrange any kind of appointment it’s usually made in good faith but, circumstances can so often thwart the noblest intention. I’ve been feeling quite vulnerable, health-wise, with a recurrence of sudden onset sundry joint, muscle and lymph node pain.

It’s rather hard to describe how (what starts as) an acute breach of one’s pain threshold transforms itself into a prolonged groan and nausea inducing pulsating bruised sensation.  Occasionally the application of wrist, knee, elbow and shoulder supports provides temporary relief but at other times they have to be accompanied by taking a couple of tramadol. For a few days in the past week, with the aid of a little preventative pain-killer consumption, I seemed relatively free of the above aches and  discomfort; even my IBS symptoms were in temporary abeyance.

That should have seemed too good to last but, I so enjoyed the welcome break that, I was rather shocked when the above symptoms alongside others returned with a vengeance. A chest crushing response to sudden unexpected sounds, IBS, post-nasal drip, sore throat, loss of appetite and sudden pallor overwhelmed me yesterday, and I became quite frightened. My body imposed a regime of rest on me; I kept dozing off intermittently throughout the day even though I’d had my normal twelve plus hours of bed-rest, with intermittent but not necessarily refreshing sleep, as prelude to this ultra-discomforted day.

At present it seems as if my sundry prescribed medications are failing in their duty, reflux, post-nasal drip, IBS are all nagging me into acute awareness of their presence. I still am able to count my blessings, welcoming each new day to bask in the love of ma belle amoureuse, having a roof over my head, water on tap, essential heating,  and food in the larder. My heart goes out to all those less fortunate than myself.

*******

This post also appears on Mal's Murmurings

living moderately

Well hello again! I’m not sure whether its weeks or months since I last proffered a “proper” blog post and, I must admit that the prospect seems rather daunting. No excuses, there’ve been good times and bad times, rough days and smooth days, since my last full offering and my stamina reserves have been used on other pursuits.

Upturns are represented by my casting aside the walking stick on several occasions, managing a moderately brisk walk of several hundred yards, whilst still lamenting an inability to manage a few miles. Some people are never satisfied!

I still enjoy our garden, no matter what the season, albeit from a passive observational perspective; what would we do without the professional services of our friend Martyn? Although I sometimes pride myself on my pacing, I still find myself suffering the payback penalty when enthusiasm for a modest task leads to even a modicum of over-exertion.

The usual problem is recognizing the exertion that may be demanded to fulfil an apparently simple undemanding task. One such example was a recent successful attempt at re-potting a contorted hazel shrub. Initial preparation of the new container went smoothly but, once I’d placed the plant in situ, the task of infilling turned out to be the proverbial straw. Brain fog, an amplification of all my familiar sundry aches and pains (muscular, joints, lymph nodes, abdominal spasms etc) and an inability to control my legs as I headed back to the house – a kind of conscious restless leg syndrome! The next couple of days passed in an achingly painful, mentally hazy, sense of being; it took a little more time before a tingling sensation of being trapped in an undersized skin receded.

It’s a few weeks now since my beloved retired from her salaried employment, at the doctors surgery, so I’m really enjoying more of her company. Mind you, she’s still meaningfully occupied as a local preacher, an assistant on computers at the Acorn Centre, Fair Trade issues and involvement with the local Labour Party.

 Until recently it has been somewhat difficult to persuade her to take much needed recuperative rest. Having always pushed myself, working and playing hard, prior (and probably causally related) to succumbing to ME, I do worry that some people ill-advisedly over exert themselves rather than listening to their bodies and ensuring they always have some stamina in reserve.

                                                            ++++++++++++++++++++

Encountering ME - a selection of poems, reflecting my experience of living with moderate ME can be read online or available as a free download from Scribd.

Mal’s ME Jottings – a selection of blog posts are also available on Scribd – read online or available as a free download.

  

Mal moans and murmurs

I've just put a new posting, shake me and I'll rattle - but I don't know when, on my Mal's Murmuring blog. It's on the topics of aches, pains and medications.

Moany Moany not Mony Mony

"Which way do I turn?" and "dare I turn?"; these related questions come to the fore at erratically scattered instants of day or night. In the past few days, tortuous pains have danced from left side of the back (a hollow bruising ache just below the shoulder blade, as if one was undergoing a sequence of blows from a felt coated lead lump hammer) to a more acute nagging pain in the left side of the back just above hip level. These sensations tend to overlap with a more constantly recurring gnawing ache just under the rib cage and, other old familiars returning with a vengeance. 

 A nausea inducing throbbing pain, on the inner side of the upper left arm - accompanied by a tenderness in the armpit, frequently prevents my attaining an appropriate period of rest during the night. As exhaustion overtakes me mid-afternoon, a gnawing ache, occasionally becoming more acute, in wrists and elbows necessitates the donning of wrist splints (both arms) and the taking of additional pain killers.Today, this discomfort in upper limbs vied for honours with a throbbing pain around the knees which seemed to ease slightly with the donning of elastic supports.

 A sensation of giddy light-headedness, alongside not infrequent griping reminders of my IBS and diverticular problems, does little to help me feel at ease. Despite all the above, I did manage to enjoy a celebratory lunch at The Park yesterday for our wedding anniversary but, even that didn't come payback free!

the space-hopper weighed down

A deep lethargic spirit consumes my very being; a lead weighted space-hopper would be about right as a description of my personage at 11.30 am. Last night was the worst of those seemingly endless, restless, nauseatingly painful nights that I’ve experienced in a long time. Don’t get me wrong, a disconcertingly discomforted restless night is currently par for the course, but last night was topped with added painfulness. Even my regular pre-emptive strike against nocturnal discomfort, amitriptylene and tramadol taken an hour or so before snuggling under the duvet, seems of little if any avail these days.

 

As I fitfully tossed, turned and squirmed au lit, post-nasal drip and gastro-oesophageal reflux added a further frustrating layer of dis-ease to the tenderness of cervical and axillary lymph nodes. Invisible clog dancers throbbed their way from armpit to elbow, elbow to wrist, before treating the rib cage as a xylophone. As I stretched my legs over the end of the mattress, my toes burnt as if they were being scrubbed with a wire brush. Once the nagging aches pulsed through my hands I decided to don my wrist splints which, somehow, seemed to gradually alleviate the pains in my upper arms.

 

Even the weather seemed to conspire against sleep, the roar of the wind was disturbingly amplified as I lay there, watching the flickering shadows which took on a somewhat threatening character in the darkened bedroom. An irrational childhood fear of the dark seems to have re-emerged recently, although it only applies to darkness within a building not in the great outdoors. Switching on a bedside lamp almost miraculously eased some of the bodily tension but, even then, only quite short snatches of sleep, from around 4.00am,were on the menu. It seems to be the rule that only unrefreshing sleep may be proffered to yours truly! The past couple of weeks have also seen an alarming resurgence of diverticular and spastic colon symptoms, no doubt contributing towards the sudden all enveloping exhaustion which erratically disrupts my daytime routine (or lack of such).

 

I am of course in that period of my life when I start to question how many of my ailments, or to what degree, they are symptoms of an ageing body as much as the manifestation of an underlying chronic illness?

 

Now, here’s the surprise. In spite of all the foregoing ailments I still manage to enjoy life, constantly amazed by the intricacy and complexity of the world around us, attempting to interpret one’s relationship not only to the earth and one’s immediate vicinity but, how we fit into the whole cosmic scheme. The joy that I gain by observing the sheer variety of flora and fauna, even just within the confines of our garden, still fills me with a sense of wonderment. That there is something, rather than nothing, into which we have been thrown, is cause enough for celebration; the love I share with ma belle Bright Light ultimately overwhelms a one time tendency of mine towards cynicism.

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!

ailing and rejoicing

It seems really strange how quickly the days, weeks, months and even years, scurry by! I often think of how little I manage to do each day, and yet, time still manages to pass almost too quickly for comfort. Even on days where my sundry ailments are crying havoc, and I wish the pain and discomfort would quickly pass, I can never wish the day to end as I look forward to my OH’s return from work. I wish the ailments would disappear but not the day.

 I appreciate every moment of my existence, the piscine activity in aquarium and pond, the birds visiting our garden but, most importantly,  the more time I can spend with my beloved the better; each moment of life is to be savoured and I give thanks that I still have the ability to appreciate it.

As I write I’m sitting in comfort at the fireside, listening to Berlioz’s Overture to King Lear (courtesy of Radio 3) and, casting an eye over the garden; I never thought multi-tasking was something I could manage! My furthest ventures out in recent weeks have been to the local shops and, on one occasion, the extra few minutes trudge to see my doctor.

Even after 8½ years, since succumbing to this illness, I still find it difficult to accept that I can no longer take a “proper” walk! I can at least manage many things better than was the case in the not too distant past. As long as I remember to PACE myself, take appropriate medication, and feel and express gratitude for all life’s blessings (including the ministrations of my physiotherapist – herself a PwME – as she applies the acupuncture needles ), I do experience reasonably long periods when many of the symptoms appear to have gone into remission.

I am currently battling (unsuccessfully for the past six to eight weeks) with acute, although spasmodic, pains in the hip and left lower limb joints and muscles. Externally applied Ibuprofen gel had barely any effect. A thorough examination by my GP, who I saw once these symptoms started interfering further with an already erratic pattern of unrefreshing sleep, left me feeling rather more bruised and battered. He prescribed 2 x Co-codamol 15/500 to be taken (in alternate doses) with my usual 2 x 50ml tramadol and the usual pre-bedtime amitriptyline.

 So far the results are not at all promising but, tomorrow I’ll be going to the District Hospital for a hip X-Ray and blood tests, and the possibility of a further scan.

Although I initially thought it may just be a bout of sciatica, rather than a recurrence of my herniated disc problem, I’m no longer prepared to self-diagnose.

As I continue writing the Red Kite has entered my field of vision, circling just beyond our garden boundary. I’m quite surprised to see it today as conditions are wet and blustery. At lower level, blue tits, coal tits, and a robin have been visiting our feeders.

This evening, emotional and physical stamina permitting, I’m hoping to attend the AGM of our local Labour Party.

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

Rare day

 One of those rare sunshiny bright (albeit chilly) mornings drew me up the garden (lack of) path. Task one was to net out kilos of fallen leaves from the pond, and applying same to garden borders. That task completed, I set to refilling our sundry bird feeders to add a further gleam to my nascent halo!

 

Such was the sun’s effect on my morale that, once back in the house, I forgot to turn the fire on until the chill had begun to gnaw its way into my corporeal being. It wasn’t too long after that when the old familiar aches and pains began to make a negative impression on my sense of well-being. It wasn’t long before the aches in arms and feet induced feelings of nausea. Next thing, a light-headed giddiness hit in as an accompaniment to a sudden, simultaneous, onset of dyspepsia and flatulence.

 

Wrists strapped and tramadol ingested, I rested a while before swallowing lansoprazole and mebeverine in advance preparation for an early evening meal. Thankfully, the intensity of the muscular pains soon settled to a more manageable level and the nausea discharged itself from my psyche.  

 

As the indigestion settled down a little, I ventured into the kitchen and griddled a couple of oak-smoked salmon fillets, accompanied by a gently spiced stir-fry of red peppers, cherry tomatoes and mushrooms (marinated in a garlic, turmeric, tikka and soy sauce concoction) sprinkled with a few flakes of oak-smoked sea salt.

 

And that was my day … so far!

A Breach of Composure

And suddenly the floodgates open, tears stream down my face and, I have to admit that I’ve slipped back into a state of (re-active) depression. A few references on a DVD to Christmas, and other (potentially harmless) mentions of future plans, supplied both trigger and detonator.

 

I cannot cope with planning on any scale; the stress of risking letting others down by not materializing (at the proposed event) almost outweighs the risk of social isolation by avoiding pre-planning. I’ve always preferred spontaneity to planning and, these days, I can only venture out to any function at such time that physical and emotional stamina levels permit.

 

For weeks now I’ve gone to bed wondering if I’ll still be around for my beloved; at other times, during the day I sometimes feel so washed out and painfully exhausted that I’m hoping and praying that I’ll still be alive when ma belle returns from work. I’m sure that the endless hours of restlessness and unrefreshing sleep does little to help the situation.

 

Randomly recurring chest pains, most probably related to my digestive problems, sometimes take on a terrifying aspect, especially when accompanied by a whirling light headed giddiness, racing pulse and sudden pallor. I’d never have believed that one could change from shivering to sweating and back in the course of a few minutes, without any changes having occurred in one’s immediate environs, were it not for my frequent experience of such a phenomenon.

 

A spastic colon and mild diverticular disease tend to optimize the de-energizing  effect of the other muscular discomforts; frequently having to rush to the loo at very short notice (uncertain as to whether it’s flatulence needing release or a more explosive expulsion of organic matter) leaves one with little opportunity to regain their composure.

Progress or Regress

 Over the past few weeks I’ve managed a bit of gentle socializing, a couple of meals out at Al Bivio, lunch at Café Culture, and even a wonderful buffet lunch at Wesley followed by a stimulating talk, necessitating conversation with ones neighbours at table, from the President of Conference.

 

Essential as these socializing occasions are for one’s morale, I once again, misjudged the amount of activity I could manage without payback. I’m afraid my payback threshold is much lower than I’d hoped. Payback rewards usage of reserves of both emotional and physical stamina.

 

Shovelling compost from bin to wheelbarrow, not much more than a dozen shovel loads at that, and hence to a small section of garden border proved several shovel loads too much. Not only the refreshed aches and pains in the lumbar region but, a full torso and limbs spread of irksome twinges, peripatetic clog dancers stomped their repetitive way across and along muscles of upper and lower limbs whilst a vague dull headache gave way to waves of giddiness, as if to emphasise my reward for a job well done.

 

On another occasion, just changing twenty litres of water from my main aquarium was the camel’s backbreaking straw. At least the far too regularly recurring shooting pains in the upper arm (armpit to elbow and vice versa) have withdrawn their attention, in response to a more regularized tramadol habit!

same old pains regaining confidence

A plan to wait for an upturn in my state of wellbeing, before writing another blog post, has had to be withdrawn from my agenda.

 

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

 

Apart from the griping gut churning abdominal spasms, a combination of regular IBS and diverticular problems, there always seems to be something extra to grab the focus of my attention. Flatulence and dyspepsia are so commonplace as to go unremarked; I only wish I could ignore the gastro-oesophageal reflux!

 

I still seem to be undergoing some kind of relapse, intensifying over the past few days, as acute chest, joint and muscle pains, tenderness in armpits and under jaw, join forces with the above mentioned ailments. A recently refreshed collusion between GORD and post nasal drip seems to further conspire against any hoped for sense of well-being.

 

Mid to late afternoon, almost as a matter of routine, that grinding nausea inducing hollow ache in the armpits sets in. On a good day, ten minutes sat with my arms pressed tight against my back alleviates the ache, to some extent; on most occasions it’s also accompanied by aching pains in elbows and/or wrists. Sometimes supports applied to wrists and elbows bring the necessary relief but, increasingly, I find that I need to resort to some strong painkillers.

 

Although I rarely spend less than twelve hours (night & morning) abed, I increasingly have to resort to an hour or more lying down in the course of the day, the need usually prompted by aching limbs and an unsettling aching giddy light-headedness.